Hi... My name is Geri and this is my first post. Three weeks ago my husband Richard, age 62, was diagnosed with SCC found with fine needle biopsy. After MRI, PET scan and other biopsies the diagnosis is TINIMO BOT. The radiation oncologist is very optimistic because the tumor is so small, less then 1/2 inch 1 cm. Also, he has no health problems, takes no medication, and is very physically fit and active. In fact, 2 weeks before the first diagnosis we were up at 9500 feet hiking in the Sierras. This has been such a shock and I have been on the internet doing much research to be as prepared as we can possibly be to get through the treatment. There is no better resource then all of you that have walked the walk and know what we will be facing every step of the way. I'll be asking many questions in the months to come. but right now I have a couple of questions to start. We are meeting Wednesday with the radiologist for the CT and fitting of the mask. Richard will have 7 weeks of IMRT and Cisplatin 2x or 3x during the radiation. I have my questions ready for this appointment, but if anyone has a suggestion as to some helpful questions to ask, I would appreciate feedback. Also, would you recommend AM or PM appts,. I think mid-morning might be a good time. We meet with the oncologist on Dec 15th and I'll also have questions to ask about the side effects of the Chemo. If you have Chemo weekly or in 2-3 treatments is there a difference in the side effects? I've been doing so much research that I do feel informed to ask the doctors' questions. It would be great to hear from anyone with any feedback at the stage we are at now and what we should ask at this point. Richard will have a PEG tube put in prior to treatment. I've learned so much from reading this forum and I want you all to know how much it means to us that we are not alone. I'll be updating with info and questions. Thanks, Geri
Welcome to OCF, unfortunately. You'll get a lot of great responses from great people. Personally, I liked my morning appointments...in and out as quickly as possible. I had one session at 1pm and it was a full house, patients all over the place.
Radiation was tough, drink 48 to 64 oz of fluid and 3000 calories a day--every day. Stock up on Carnation VHC it has 560 calories in one tiny 8 oz can. I was 215 pounds before tx and now I average 165 to 170 pounds and I lost a lot of muscle...I'm like soft or something. Taste will be completely shot, so have your husband pig out on all of his favorites. Good luck and stay strong.
btw, update your signature so it's easier to know what you and your husband are going through...that way we don't have to go back to your original post to re-read it and you won't have to repeat yourself.
Welcome Geri (and Richard) I donít have specific answers but I can share that each patient reacts a little differently to chemo and radiation. Hopefully Richard is being treated at a top rated hospital so that he is getting the best possible care. As far a what time of day for radiation, Iíd ask the technicians what the least waiting time of day is. For me it was the first thing in the morning. By the afternoon all of the delays would compound such that waiting was longer. The radiation treatments do not cause any immediate tiredness so that he will be able to do some other things during the day. The latter weeks of treatments can be grueling so you would do well to prepare for a tired and cranky patient.
Let us know when you have questions. Please also keep in mind that some people get through treatments without major problems. I hope this is the case for you both.
Sometimes reading here can be a little depressing and lead you to believe that it is always really tough. Hang in there.
Welcome to OCF. You will find lots of support to help you and your husband thru this.
First thing I would recommend is for your husband to eat like crazy. Of course go for nutritious foods. Now isnt the time to worry about gaining weight. Just have him eat everything he wants now, it could be a very long time before he can eat and taste properly.
As far as the PEG tube goes, it is a goood thing. Others probably will debate the fact that its a necessary thing to have. I lost 65 pounds during treatment, and that waas with having the PEG tube. With doing chemo and radiation, your husband will need it to get his nutrition. His doctor will order prescription formula for the PEG tube which is usually covered by insurance.
Your husband should swallow, drink, and stretch his mouth open as wide as possible several times per day. This will save him from alot of problems after treatment.
Some questions you could ask... what type of chemo? Cisplatin can cause hearing problems, so have a hearing test done. The side effects seem to be easier to tolerate if chemo is given in smaller more frequent doses. Make sure you tell the doctors every single medication even over the counter and vitamins he takes. Ask about getting prescriptions in advance. Once treatment starts is very inconvenient to constantly be running to the pharmacy. If you get them in advance then you will be ready with anti nasuea meds. You could ask about any local groups to help him cope with this, or to recommend a therapist. Many oral cancer patients need therapy and anti-depressants to get thru this.
Its a good idea to start lining up helpers. People who would drive your husband to treatments or could help you by grocery shopping or cooking. As the caregiver you will get worn out thru this too. Try calling the American Cancer Society, they have several ways that they can help you.
Hope I have given you some useful info. Best of luck to you both.
I had my radiotherapy treatments in the morning that way usually there was very little waiting, except for every Wednesday which was when I had the chemotherapy first and then followed by the radiotherapy. On those days I usually didn't get to the radiotherapy rooms until late in the afternoon, which made those treatment days very very long and tiring.
Fortunately, where I was treated the chemotherapy nurses always contacted the nurses at the radiotherapy rooms to advise them that I was on my way upstairs so they would put me straight into my treatment and prevent me from having to wait.
Unfortunately it can be a difficult long road and I really do wish that had I of found this site along time before I did and therefore I would have been more prepared with what to expect. It certainly would have made me realise that what I was going through physically and emotionally was not unusal and was part of the course for most people.
I prefered mid morning to a. avoid commute traffic and b. to allow enough time to eat a little and prepare for RT. I also had ct in the early afternoon.
I also had mid-morning and that worked best for me -- I could get it done, come home and crash...
If your med ins won't cover VHC for a PEG, then use Nutren 2.0 which has 500 calories per can (Made also by Nestle).
I found the best time to be late AM. This gave my husband time to settle down from overnight issues and start the day slowly.
Also, the radiation nursing staff was always available for questions and would do an evaluation (without appt), if necessary. If we could talk to them, we didn't mind hanging around after rad tx. We found this most helpful.
I also wanted enough time left in the day to go to drug store for numerous prescriptions, etc., before rush hour. Lottie
I was an early morning radiation person. I was the first one on the machine every day at 6am (it was so my husband could bring me and still go to work after). I liked that because I was still pretty out of it from getting up so early and I would sleep through treatments (not so much at the end though) and then I would come back home and sleep for a good while. I also had my chemo on Mondays at their first time slot (8am) so that way I would have my afternoons open to go see a movie or do something outside of the house because my husband would take all day off on Mondays - and nobody goes to day time movies!
It appears your husband is having the same schedule as I did 7 weeks of IMRT and Cisplatin. I did a hearing test before Chemo , then after each treatment, as I was having some damage they spread the treatments over 2 days after the 1st dose. Everyone reacts differant to the treatments, compared to many I had a easier time but have no idea why. I did try and keep my caloric intake up , lots of water and I tried to at least walk some everyday. I had to start off at doing rads at 6:00pm for the 1st week then got slotted in mid morning. That worked great for me as I had about 70 mile drive each way and was able to avoid traffic. I normally drove myself so I was eager to stay out of rush hour time. Downside, at least at Duke was once in a awhile they would get backed up. There is a great section on the forum - Getting thought it project that has some great suggestions and ideas. Good luck and listen to all these wonderful people on this site. They are very smart, supportive and compassionate.
I found that I felt better when I woke up and felt worse as the day wore on so I was fortunate that I chose a 9:30 am time. Even though I had to drive 40 miles one way and directly through the City of Tampa, I missed the am rush and was home way before the pm rush.
My best time was early morning for rads and chemo right after. By the time these 2 were over, the traffic had let up and I had a nice drive home. Good luck and welcome to our family.
Hi, Well today was the appt for fitting the mask and the CT for the mapping for IMRT. Everything went smoothly and we both feel comfortable with the doctors and level of care. We met with a nurse to review everything and set the schedule. He will start radiation on Jan 5th and have the 1st chemo treatment the same day. The peg tube will be put in about a week before. I have a couple of questions. The nurse made it sound like he would be quite ill from the chemo immediately and really commented about how awful he would feel. It's good to be realistic, but from all the reading I've done, I assumed he would have 2-3 wks before it all caught up with him. She also suggested that he starts using the feeding tube before he really needs it to practice and see how his stomach reacts. This seems like a good idea. Davidcpa, how did you go without a Peg and not lose too much weight? Next week we see the med oncologist and the GI Dr for info on the Peg. I would appreciate any feedback and advice. Also, how soon after the treatments did you all feel like you were over the hump? Thanks for all your support...Geri
chemo has immediate effects for many
radiation takes (usually) 2-3 weeks to kick you in the hiney
each person is different though and the more built up you are
prior to beginning treatments and the more well nourished and
hydrated you remain the better you will do thru it.
the peg tube is a huge blessing and not hard to use. it is a bit painful at first (figure about a week) but it gets better ... watch for redness and increased pain in case it gets infected as he would want to get that treated if it happens but most go thru it just fine and are thankful to have it for backup when the mouth gets too sore to eat normally
most report feeling over the initial "hump" about 6-8 weeks post treatments. this varies so much by each person though and how big of a hump there is to conquer also varies so one has to remain positive, and be proactive when you see problems beginning to arise. there is usually help for all problems you may encounter so speak with the doctors and nurses as you go and he needs something - make sure they hear you and respond with help ... if they do not - speak to someone else or speak again and again until they listen.. there is no need to suffer when there is help available.
i wish you and hubby all the best. by mid feb you should be looking BACK on it all and being glad it is all behind you.
I did not have serious effects from the first dose of Cisplatin. After about a week I began to have significant taste issues and it was pretty much gone by 2-3 weeks out. The Cisplatin enhances the effects of the radiation treatment and I found the overall treatment to be cumulative. That is to say that I was much more affected towards the end of treatment. After about 2-3 weeks I started coming home from my morning to early afternoon treatment (I accomodated the schedule at Stanford) and took a nap. The combined treatments made me very tired and I slept a lot to get through.
I did not get a PEG tube so can not share any experience in that regard. Eating was very difficult but I survived on Skandi shakes enhanced with protein powder and yogurt. I lost 35 pounds over the course of the treatment. In addition, I lost a lot of muscle but have replaced it all (and more) through a diligent exercise regimen.
Prior to treatment my Radiation Oncologist at Stanford suggested I get any metal fillings in the lower jaw replaced with epoxy. Insurance did not pay for this but I had it done in order to help prevent damage to the rest of my mouth. She told me it would "help to keep your tongue happy" and I believe she was correct.
I know this is a stressful time and the prospect of the treatment can seem daunting, but you can and will get through it. Please feel free to send any questions you may have. Where is he getting treated?
Enjoy the Holidays! You will get through this.
Hi again, I would like to know if anyone can explain why some people have weekly Cisplatin and others have the dose 2x -3x? Is this just the standard of each hospital or is there a medical reason? Which seems to be the choice of the majority of doctors? It seems like the smaller more frequent dose might have fewer side effects then the mega-dose. Also, did anyone's oncologist tell them not to take any extra antioxidants or have any restrictions for supplements? Thanks, Geri
My understanding of the Cisplatin dosage is the larger, less frequent dosage is 'the standard,' approved and accepted by insurance companies. The weekly, smaller dosage has been now found to be just as effective, but, I assume, more expensive, although it has far fewer long term side effects. I was able to get the latter dosage approved because I ran a higher risk of neuropathy, nerve damage, because of my previous chemotherapy history. I think for most patients, though, the doctors have to have a compelling reason for the weekly dosage in order to have it approved by insurance.
As far as when the "effects" start to kick in it seeems to vary. The 1st 4 weeks of Rads and 1 chemo I was doing almost everything I was doing before, even went jet skiing. After 2nd Chemo dose started to slow down but still drove back and forth, worked some and made myself stay semi active (short walks around the block). The last 2 weeks of Rads and last Chemo and 2 weeks after were not a lot of fun. But drank water , Ensure and got through it.
I cannot comment on Peg as I did not have one.
First off I did loose a ton of weight, which I could not afford to and that led to all sorts of complications and I ended up in the ER 3 times in the latter stages of Tx to get much need fluids. My biggest problem became nausea which I just couldn't seem to control. Once I stopped taking my pain meds (which didn't seem to work and caused more adverse side effects), the nausea went away and I started swallowing 3000 cals a day using Carnation Instant Breakfast VHC and the rest was history for me. Believe me we have had a ton of posts on Peg vs. No Peg and I don't want to start another debate but if he does get the Peg please make sure he uses his throat daily through out the entire Tx and beyond.
My recommendation is that he get WEEKLY Cisplatin Txs and daily IV's of fluids and a port and swallow daily to keep those muscles in good working condition.
My Bill's experience was about the same as "Bill in NC" ....he had weekly Cis and twice daily rads and really did not start feeling ill until the third week into treatment. The bad stuff came on quickly...Friday of week 2 I was asking when Bill would see changes, etc. and by Monday of week 3, he stopped eating by mouth and we were putting everything thru his peg. I charted each calorie and ounce of fluid to make sure he met the optimal intake and also placed a bottle of Rain by his chair to insure that he was swallowing the whole thing by the end of the day to keep that mechanism working. The best thing you can do to help with his fight during treatment and his recovery is to keep hydration and nutrition maxed.
Bill is doing well...eating and drinking just fine and we got a great report from the CCC yesterday. Even with a dire staging, people do make it thru and have good quality of life afterwards.
Best wishes thru all of this....hugs,
One other thought....I had almost forgotten. My treatment plan was to have an IV flush the days following Chemo with a blend of various "things. I remember Potasium being in there with other "good" things. Not sure if this is Std Protocol at Duke or based on the Dr ?
Also they always had the nutritionist meet with me at least 3 times a week to grill me on food intake, fluids, taste issues, exercise, ideas on how to get a calories/protein . In truth she was very motivating and a big help Duke also had a Psych person vist with you frequently to help with the mental aspect of treatment, pain, frustration , etc. I am a half full kinda of person but it was nice to have someone to yell at, talk to etc. my point is use all of the resources they have...you are paying for them.
It looks like Richard's specs are about the same as mine were with BOT. The facility where I underwent treatment had me to select a set time for radiation each day and I picked 10:30 AM which worked great for me. I think the time you select is more of a personal choice for whatever fits your situation better. On my chemo days I would just go straight to the "chemo suite" following radiation where I would be until usually about 4 to 4:30 PM after starting around 11 AM.
The PEG was a real pain in the neck but was a necessary evil. In fact, the center where I was treated would not treat a patient for H&N cancers unless they agreed to the PEG to begin with. Once I was 3 to 4 weeks into treatment I saw exactly what they told me about. I had to do all intake by tube for about 3 weeks but I would always try and drink as much water as I could by mouth just to keep the swallowing tissues active and avoid atrophy. I was warned about such a problem that could require need for a throat stretching procedure down the road. Just the thought of that kept me drinking that water every day! One bit of advice for Richard regarding that tube. . .tell him that if at anytime he has it uncapped for feeding or cleaning and feels an urge to cough, put the cap on that thing first! I, or rather my wife who was in the line of fire, found out the hard way!
Good luck and both of you just hang in there, take plenty of notes and follow all of the instructions and it will not be as bad as you might be anticipating.
Hi, Much thanks to all of you for your responses and info. The fluoride trays for Richard will be ready next week. Should he start using them before TX begins or wait? Also, to what extent did any of you have dental issues due to the TX? With the IMRT it seems as if they make every effort to really zero in on the cancer even though the whole area is affected. Did any of you have problems with silver fillings? His dentist did a cleaning and did some repair work and said he was good to go. Were anti-nausea drugs prescribed before the chemo or given during? I know he will be monitored, but chemo along with radiation is so daunting, especially after being so healthy all your life. The doctors were amazed that we aren't on any medications for anything. I guess that is unusual for people our age. Is there a difference in the damage to the salivary glands with BOT as opposed to tonsil or oral cavity? I know that I have a lot of questions and I'll ask the doctors, but all your feedback is reassuring and helpful. Thanks ahead of time ...Geri
There is no reason to not start the fluoride as early as you can, it will no no harm, and will have those extra days to penetrate into the enamel of the teeth. I had no problems with fillings and crowns made of many different materials. The impact on the salivary glands and other vital structures is directly going to be impacted by their ability to map the treatment around these anatomical structures. Some structures will have to have radiation pass through them to reach the areas that need to receive the radiation and 100% sparing of important non malignant structures cannot be avoided. So there is always some damage to these areas. However compared to the treatments that those of us went through a decade ago, there is significant non disease involved structure sparing with IMRT.
My dentist started me on fluoride 1 month pre Tx and I have used it every day since except for a few here and there. I also keep my trays in my mouth for 30 mins and I do it right before bed time. I now use a generic brand and it saves me a bundle each tube.
I got my fluoride trays pre-surgery and started using them then. I obviously couldn't use them for a while post surgery but I picked back up with them right before treatment started.
Start the fluoride now, continue as long as possible and restart as soon as possible.
Hi everyone... Thanks so much for all your advice and comments. Well, it looks like we are all set to go on Jan. 5th. The peg tube will be put in on Dec 29th. If any of you have advice about that procedure, let me know. The nurse mentioned that there would probably be some discomfort for a day or so. The first chemo and TX will be on the 5th. I was a bit surprised that the Dr said 4-6hrs. a treatment. With TX on the same day, it sounds very daunting. Did any of you lose the hair on your head from chemo. The Dr commented that there might be some thinning, but maybe not. He also said that some people have nausea and others don't. Richard is having only Cisplatin. Any advice about chemo would be greatly appreciated. We are pleased with the care so far and everyone has been very helpful. If the answers to my questions are posted elsewhere on this site, direct me there. I know it can get tedious to repeat yourselves with newbies. The reality of what we are about to go through is starting to sink in. I know we can't know exactly how Richard will respond, but we will be prepared with all the Biotene products, aloe vera jell and liquid supplements and anything else we can think of. I'm sure as time goes on, we'll be adding other things to help. I want to thank you all again for your help. The doctors can talk until they're blue in the face, but you really can't understand unless you've been through it....... Geri
I didnt lose my hair from cisplatin. Like most others on here, I lost some hair on the back of my head from radiation. It was near the bottom of my head each side where I lost it. Dont worry, it can be hidden and will grow back.
Ask the docs about prescriptions that you can get now. It will save you time later when you will be busy caring for your husband. The chemo usually hit me about 5 to 8 days after I got my dose. Even with anti-nasuea meds, I was really sick. Im really not the best example to use since I didnt have a caregiver making sure I had proper nutrition and hydration. To be honest, oral cancer treatments can be very difficult to go thru. It will take its toll on not just your husband, but unfortunately on you too.
Im really sorry to tell you the bad stuff, I know its a scary time for you. Its not easy but it is necessary and can be done. Ive gone thru it twice and consider myself one of the lucky ones. Keep asking questions and write things down to ask the docs, that can be very helpful.
Its also a good idea to get your husband to eat alot right now and get alot of fluids too. Eating will become difficult during treatments, so he needs to bulk up now and not worry about his weight.
The peg area will be a little sore for a couple days. Then its not a big deal. I used neosporin and covered it with gauze pads to keep it clean and healthy. Your husband needs to keep it clean so it doesnt get infected. Is he getting a port? That would make chemo easier.
Keep asking questions, we will guide you thru this.
peg hurts for about a week and if it lasts beyond that, gets worse ot gets red have it checked for infection, which happens quite often.... they will show you how to care for it and how to use it so dont worry. it is a big help when needed. best wishes
I would still ask why your docs are not going with the Cisplatin x 6 vs x 3? I had 3 and it was very tough. If I was going to be treated now I would insist on getting it weekly unless they could prove to me why every 3 weeks was better.
Your journey to this point brings back so much...the exhausting list of appointments and requirements just to get to the treatment stage. And so much is up to the caregiver....I had no idea.
Bill had a fairly easy go of it for about 2.5 weeks into treatment and he was receiving 2-a-day rads. He drove himself (at his insistence) for all of that except for chemo Thursdays that lasted from 9 in the morning starting with radiation then chemo from 10 to 4...then another rad treatment. Those days were hard but not impossible with the two of us making it work. I would go get Bill lunch and he would eat while in the infusion room. I was lucky because I had family in town that would prepare dinner.
Week three saw him in too much pain to eat and from that point on, totally on peg feedings. I just carried cans and water to feed him on chemo days. I charted each can and each ounce of water to make sure he was getting good calories and fluids, I also watched a bottle of Gatorade Rain I placed beside his chair to see that he was swallowing all of it by the end of the day. Also hard but not impossible. I also started driving to appointments at the three week mark.
Bill did have hair thinning but did not lose all of his beautiful head of silver white hair. He did not have much nausea at all...only a little after the AM feedings.
He faired pretty well thru treatment until the last week. He started running a temperature and being informed by the docs that this was emergent, we went to the ER. Four days in the hospital with an unknown infection and low white counts and he was out...finished treatment and was starting to eat by the second week after the last radiation. Three weeks after treatment he was eating totally by mouth.
So you will get thru this with maybe a few bumps and days when you are really down. It will end though and then you can work toward the healing and new normal.
Good luck and hugs,
I am a big planner, verging on compulsive type personality, and am most comfortable dealing with worse case scenarios rather than being caught off guard. However, I found out that there are so many potential side effects and issues related to this tx. that it was impossible to be totally prepared.
At 2 weeks into tx., I changed my approach. I was busy reading and worrying about future long term side effects (eating, nutitional supplements, dry mouth, etc. ). Meanwhile, I was not paying attention to the fact that my husband's fluid intake had suddenly decreased tremendously. It startled me into taking things one step at a time.
I found it most helpful to be in close contact with the nursing staff at the cancer center. If necessary, they would consult with RO or MO or arrange for MD/NP/PA to perform an exam/evaluation. They encouraged immediately reporting every single side effect. Often meds or IV fluids were prescribed. If nothing could be done, at least it was noted in the record and we knew that it was to be expected. It seemed that every other day there was a new problem and the important thing is to not let the side effects that can be controlled escalate.
Of course my research on this site helped me to ask more pertinent questions and understand the team's explanations better. Lottie
As I have replied earlier, I may have had an easier time than most but I was over prepared for the worse case. Options for staying near the hospital verus driving 70 miles each way, beening sure my wife had all my passwords for the computer, back up transportation, all service done on vehicles ahead of time, to writing down "stuff " I do, down to where I buy filters. Made me fill better to have as many bases covered as possible. As it turned out I could handle those things myself.
I did loss hair, but I have thin hair and it is receding....I just shaved mine....it grew back thicker than ever.
Days I had Chemo I was there for at least 4-5 hours. By the time I did Rads, then went to the other area, get hydrated, it always took time. I always took meds before Chemo, never got sick. But they always stayed on top on this and made sure I did not have any problems. I used this forum to know the questions to ask. And thanks to the smart people on this site I used their experience and/answers to know ahead of time what I thought the answers my doctor should give me. On the important topics they typically matched. It seems most CCC that provide the "Gold Standard" level of treatment and care are very similiar in there procedures/methods.
I did not use a peg tubeso no help. Good luck....you guys can get through this
Hi everyone... Deb and Lottie, thanks so very much for your responses. It means everything to know that you have gotten through this ordeal and are now at your "new normal." Knowing I can post with questions and concerns is quite a relief. I know everyone is different, but are you able to do anything when the symptoms are at their worst? I'm thinking that with the treatment one has to be very careful about infection or colds or even getting a cut. I guess we take it as it comes and try not to anticipate. I'm taking the advice here and making sure I have enough stuff to get started and stay on top of things. It seems like many of the posters have had other chemo drugs along with cisplatin. Richard is only receiving cisplatin and the protocol is 3x. I asked about weekly and he mentioned statistics etc. and went on to the next question. It's probably their standard treatment. Why do some people stop at 2x and does that mean that you still get the benefits? Do they base the chemo on your weight or is it a set dose? I'll ask the nurses these questions, but if anyone knows, let me know. This forum is wonderful and so full of info. I'm telling all the nurses I come in contact with to tell any of their head and neck patients to check it out. Deb, if your husband started eating within a few weeks, did he leave the peg in just to be on the safe side? What kind of activities can you do with a peg? I'll be posting with more questions and Lottie, I'm also a big planner and a bit compulsive about it. My husband is much more laid back and tends to take things as they come. After 40yrs.(Yikes!) of marriage we make a good team. Thanks again everyone and I appreciate any responses....Geri
Geri - Regarding infections, at our center the medical staff monitor blood work results (wbc, etc.) and notify patients if they are in the "danger zone". During that time, extra caution must be taken with exposure to potential infections. My husband's blood work never fell that low, so we used common sense precautions - hand washing, avoiding sick individuals, etc.
My husband received induction chemo (3 agents) in addition to concurrent Cisplatin. He decided, with input of local MO and consultation at Dana-Faber, to receive very aggressive tx. His primary tumor was low volume but lymph node was borderline size, as far as recommending induction chemo. Was all of it necessary? - not sure.
You asked about when symptoms are at their worst - My husband had a horrible week approx. 5 days after induction chemo. He recovered from this. 1 1/2 weeks into rad therapy, symptoms started. He was able to walk daily until last week of rad. During final rad week and 3 weeks post rad, he could do almost nothing. He was on high doses of narcotics (patch & morphine). I believe this varies greatly, both the extent and length of time for SE to diminish. My husband had severe fatigue for only a short time but suffered from terrible mouth symptoms. He is retired so returning to work was not an issue. Lottie
* Dividing your post into paragraphs makes it much easier to read and follow.
Your husbands immune system will be weakened. It is best to get a flu and a pneumonia shot. Use the hand sanitizer to kill germs and avoid people who are sick. Its not a bad idea to avoid crowds either. It may sound like its over-reacting, but better safe than sorry.
You will know when the chemo and radiation starts to hit your husband. He wont feel well and that can be for several days. He will be weak and easily fatigued and will require more rest. It will seem to get progressively worse as treatments continue. When treatments finally are finished it will take 2-3 weeks before he feels better. At that point he still wont be even close to being well yet. The worst time is the last week of treatment and first 2 or 3 weeks immediately after its over.
I had only 2 very strong doses of chemo. Originally it was scheduled for 3 doses but I couldnt tolerate it. Even with cutting my second dose down considerably, it was still too much for me to handle. That was me, others may be able to handle it better.
Its scary hearing all this info. Hope it helps you to understand what your husband could go thru. Some sail right thru it while others struggle. It appears that eating to build yourself up now and drinking at least 64 oz water per day help significantly in reducing side effects during treatment.
Bill's WB count was lower with each week of chemo...tested before they infused. Hindsite being what it is, we probably were not as careful as we should have been....yes, I kept house and bedding clean and he washed his hands a lot but in trying to maintain some normalcy, he went to a couple of restaurants with us (I have family next door) even when he wasn't eating and probably got exposed to something there or perhaps from my 8 yo nephew??? He also maybe had an infection from mouth sores (mucositis) but docs weren't sure...just treated him aggressively as even being in the hospital was dangerous(MRSA.)
Re: the PEG. Once the soreness from surgery was over (about 4 days) Bill did not have much restriction at all on his activities. He learned to check the cap on the tube as coughing and such puts pressure on the tube and if the cap isn't seated well will blow off and the contents aren't pretty. We kept the tube in place with a long 4 or 6 inch ace bandage (the soft kind not the rubbery self stick stuff)wrapping it around several times and securing with the velcro. Its washable so two or three helps. Bill kept his PEG about three months post treatment and we just flushed it daily even when he wasn't eating. A nurse at the CCC we went to "yanked" it out after the docs declared him in good shape. The PEG for Bill was not a negative, but rather a life saver...no issues with infection or pain.
Glad to help...keep asking and reading....we are here,
Hi, Did anyone have neuropathy as a result of the cisplatin? That was mentioned to us as a side effect that may or may not be permanent. There are vitamins that are supposed to be helpful for this condition, the B complex etc., but I'm under the impression that the doctors don't want you to take extra or any antioxidants.
From some of the research I've read, there is a debate about whether or not the antioxidants hurt or help during chemo. Richard's MO said that a regular multi vitamin would be ok and there should be enough nutrition in the liquids for the PEG tube. We just want to do everything we can to help his body get through this ordeal. After the treatments are over, he will be able to take whatever he can manage during recuperation. Did anyone continue with a vitamin regime, liquid or pills, during the treatment? Thanks for any feedback.. Geri
Juat read an article that stated supplemental AOs are dangerous as they promote cancer growth, but AOs naturally appearing in foods are OK; apparently, the food AOs have a lot of complex interactions compared to the supplemental AOs.
Personally, I didn't take anything other than my liquid diet and prescription meds during irradiation -- I rather not have the benefits than risk anything that might promote cancer.
I was told I could/should take a multi vit a day but like everything else I was told I ignored. lol I was one bad patient.
I doubt that antioxidants promote cancer growth at least not directly. (please send me the link to the article)
What is likely the issue here is this. Large amounts of antioxidants interfere with treatment (radiation/chemo). The idea with some chemo and radiation is to damage the crap out of your DNA and if the cells are replicating rapidly they cannot keep up with the repair and decide to die. Antioxidants protect cellular components. The concern is that large amounts of antioxidants may also protect cancer cells from damage. Therefore you do not use AO during therapy but you can (should) take them afterwards.
Markus, a local Seattle TV station did a very recent show on cancer stuf; I'm almost certain I read the antioxidant info on their site, but can't find it again <very frustrated>.
Here's one from OCF archives stating "Worse, some research suggests that antioxidants may actually feed cancers, protecting the very cancer cells patients are trying to attack."http://www.oralcancerfoundation.org/news/story.asp?newsId=1119
Here's another from OCF archives on AOs raising risk of cancer recurrence:http://www.oralcancerfoundation.org/news/story.asp?newsId=946
Here's an article going both ways:http://www.itmonline.org/arts/antioxidants.htm
Here's one from the local station stating the hops in beer is good against cancer (But not the alcohol, of course):http://www.king5.com/health/cancer/stories//NW_121908HEK_cancer_breakthroughs_beer_SW.6cd9aa11.html
And another saying caffeine is good against skin cancer: http://www.king5.com/health/cancer/...er_breakthroughs_coffee_SW.6ca3b0c0.html
During RT you want to cells to be sensitive to damage, especially (ideally only) the cancer cells. So antioxidants are not recommended at that time.
The fact that cancer cells are likely to use vitamin C is NOT surprising they are metabolically more active so you would expect that actually. I have a big problem with treatment of cancer cells in vitro (Petri dish). To put is bluntly this is very tricky to interpret at best and in my opinion mostly BS. Point in case, you can microwave you petri dish and kill all cancer cells and voila your cancer is cured, hardly applicable to an organism! Hell, with a fine enough needle and a microscope you could physically kill the cancer cells in a Petri dish.
After the RT treatment you are presumably cancer free and you want antioxidants to prevent unwanted DNA damage and help the immune system. So the situation is different. However there are a lot of different antioxidants that have different effects.
Agreed -- The thing that stuck out the most in the article I read and now can't find again was that the AO supplements were potentially harmful during radiation but getting them from the various fruits didn't seem to be -- I took the same route and didn't use anything -- Of course, during radiation, and for some time thereafter, I wasn't exactly hankering for things that needed to be chewed and swallowed!
Excuse me but I felt like I was microwaved to a near death state during my Tx. lol I often compare our radiation therapy to being in a microwave to newbies to explain that's why we suffer so much after the Rad Txs stop, i.e. we continue to cook just like meat in a microwave when it's turned off. Now granted I'm not as technical as Markus (he's one of the most technical on this site) but that's my CPA interpretation.
Yep, when people ask me how was it going through txs, I tell them picture yourself getting cooked from the inside out. Most don't understand how hard it can be and it's not easy painting a picture. I actually had one person tell me I was acting because I didn't want to go back to work and that I was milking the system...blah..blah..blah...I did 7 weeks and spent 9 or 10 days in the hospital loosing over 40 pounds through tx...one more week and I felt like I was going to literally die.
I was told to take one multi-vitamin a day and stay away from all AO's...I stayed away from everything except my liquids. Most of those liquid drinks like Ensure, Boost and VHC have so many vitamins that a multi would just be redundant.
Of course now I would assume the docs would not advocate taking a multi vit or any vits for that matter other than what we get from our diet since vits in a pill form don't seem to have any benefit and may even be detrimental to those taking them. OK so next ice cream will be bad for you.
I use the microwave analogy to explain the radiation and also the sunburn analogy (coming out of the sun doesn't stop the burn from feeling worse!).
I personally don't buy into the rationale that ONLY natural vits are good; granted, there may be a few vits that are ineffective or less effective when taken "out of context" because they need something else to work properly, but not all will be that way.
And, one must factor in that some people have an almost religious faith in diets, vitamins, etc. that goes beyond the chemistry.
This topic was on the national news not long ago. I take Centrum Silver and the Drs say to keep taking them. Hell, they have been part of my morning my routine for as long as I can remember. Maybe that's why I don't look near my age but have a lot of health problems. LOL One never knows does one?
Years ago when my friends and I got into exercising we went to this vitamin store. I picked up this bottle that looked neat. The guy at the register asked if I was buying this for myself or for someone special. I told him for myself...He told me no matter how many I took it would never enhance my chances of getting pregnant. LOL...How was I supposed to now that!! I thought vitamins were vitamins...
Just to give you guys more stories to tell, the microwave is not really a good comparison to radiation therapy. Instead tell them the radiation therapy is like millions of microscopic arrows being shot. Some arrows hit cancer cells, some hit good cells. The good cells are able to recover and rebuild, the cancer cells die.
Microwaves actually are radio waves (not ionizing radiation) and heat by the fact that the waves cause the molecules of food to bang into each other. (Essentially friction heating
The reason I like the microwave analogy is not the technical similarities (or lack of them), but because most people know that food instructions usually say to let the food sit after removing from MW to finish cooking. Sunburn is even better, however.
I can always count on those guts in RED to point us in the right direction.
Thanks Mark as usual.
One question though...are all the good cells hit by radiation arrows really able to recover and rebuild? I thought not?
Cripes, I never thought of myself as "a guy in red" .......
In layman's terms (the only ones I use), most of the normal cells are being replaced constantly by your body (they all have a finite lifespan). The idea is that cancer cells do not have the "time clock" for replacement. That is partly why they grow into tumors and masses. Radiation therapy is issued at a rate that will kill the abnormal tumor cells but not damage the normal cells faster than the rate at which they will naturally be replaced. So I should have said "the normal tissues recover and rebuild" as opposed to cells. In actual practice good cells are dying too. Sometimes the dose might be too much for some normal tissues and scarring might be the result. Certainly radiated tissues may not recover completely either. That is why we have so many "new normals" to deal with.
Now about that red thing....do you think we should be a different color?
I might add to Marks response that different cell types have varying times to recover as well. The red blood cells are replaced by the body every 120 days so the ones that are destroyed, passing through the carotid during RT, will get to anemic levels or close to it. The bone marrow is affected as well (mainly by certain chemos which affect white cell production) and takes a long rime to recover. Salivary glands, not directly in the beam field, take 18 months or more. Taste buds start returning in a couple of months but can take a year or more for more sophisticated taste sensation to return. Skin cells heal very quickly. Sometimes neck muscles are made fibtrotic by the radiation and never return to normal. (The fastest healing cells in the body are the cells in the cornea). The way that radiation (and most chemo as well) works, simply, is that it alters or damages the DNA in cancer cells so it can't replicate itself so it simply shrivels up, dies and is absorbed into the body (that's the theory anyway).
Another thing I might add is that a linear accelerator (LINAC), used for medical RT use, actually IS a gigantic microwave source that, when the beam is directed into a water cooled (usually titanium or tungsten) target, is transformed into high energy level x-radiation, anywhere from 6 MeV to 20 MeV (MeV = Millions of electron Volts), depending on the power source and penetration depth. Most OC is treated in the 6 MeV range.
One more thing, they don't measure dosage in "rads" anymore - that stopped decades ago. Like "cycles" were changed, in the 60's, to honor the scientist "Hertz", "rads" were changed to "Greys" (Gy, to honor the scientist "Grey") [100 rads = 1 Gy]. The maximum total dose rate, given to OC patients can range between 60-72 Gy. Anything beyond 66 Gy is considered a "boost" and is sometimes done to slam certain areas a little harder.
I also understand that the word rad was also changed to disassociate it from nuclear energy, as in the type, used in weapons and atomic bombs, and/or older cobalt 60 machines, all sources of "gamma" radiation. LINAC RT differs in that it is "ionizing" radiation and the LINAC must be on, and generating a beam, for radiation to be present. Gamma sources are always generating radiation (cobalt 60 machines are rarely if ever used in the US today but are still used in some 3rd world countries). The gamma source is simply controlled by mechanically moving 2 or 4 lead bricks (like doors or better, a variable aperture) on top of a lead box covering the radioactive source. The downside of gamma is that the source has a 1/2 life, so as the radiation loses it's potential, dose times must be increased. Often times this would result is many undesireable side effects, such as severe and permanent skin damage from the "dark" radiation found in gamma type sources.
RT is given in "fractional" doses, typically not to exceed about 1.8 - 2.0 Gy/day. If you were to be given the total dose rate at one time it would be lethal. This also determines how many treatment days you will actually have. Some new theories are being tested to split the dose into 2 sessions of .9 - 1.0 Gy. Typical treatment is 5 days a week with the weekends off. The daily dose rate was calculated on the bodys natural ability to repair healthy cell tissue.
These are the primary reasons that we say each patient responds differently to treatment and my responses listed above are generalizations.
Sorry to get so technical but I worked for the nuclear physicist who invented the Siemens LINAC and a beam bending technique that minimizes harmful radiation.
Hey go write a book "Another thing I might add is that a linear accelerator (LINAC), used for medical RT use, actually IS a gigantic microwave source that, when the beam is directed into a water cooled (usually titanium or tungsten) target, is transformed into high energy level x-radiation,"
But the microwaves are not what is used in the therapy treatments, right?
The physics of the electromagnetic spectrum are facinating in how they behave (wave propagation etc) but it gets very hard to follow when you get to light spectrum frequency because you then have particles (photons) together with wave propagation. When you cross into quantum physics it gets even stranger.
I say all that because my intent was to clarify that microwaves are not themselves ionizing radiation (think particles). This is a common "urban" thought that is expressed all the time. We have all heard people say "nuking my sandwich" in the microwave.
OMG two men in red......
Technically what is accelerated are electrons. And these high energy electrons generate the x rays.
However ... how you accelerate them can be different...
(electrostatic, induction or RF (including microwaves))
"But the microwaves are not what is used in the therapy treatments, right?"
Of course not - or you would be cooked like a hot dog.
We had an instance where an institutions nuclear physicist, calibrating the machine, deliberately defeated the high dose rate interlock (which was interlocking because the target was burned out). The patients neck was subsequently "cooked" by microwaves and he died shortly thereafter. He complained that he could actually feel the heat... This is not an urban legend.
"Particles" are a tricky concept too. They are present in Alpha radiation which can be blocked by a Kleenex. There are no particles in ionizng or gamma radiation per say - they are photons within the invisible light spectrum.
"Charged particles" refer to Proton Beam Therapy, or PBT, which I will not cover here.
the amount of x-rays is determined by the voltage, relatively low voltages can generate x-rays. CRT TV's typically have anywhere from 10-50Kv and thats why the use leaded glass in the tube face. They are almost always accelerated by high voltage DC.
For those DIY physics freaks - here is an x-ray machine you can build at home! http://www.dangerouslaboratories.org/xray1.html
Please note that OCF does not condone building your own x-ray machine and to do so is at your own peril and for entertainment purposes only. State, Federal and Local regulations may apply;-)
I never wear red...
For even more reading see: http://en.wikipedia.org/wiki/Ionizing_radiation
I hope that nuclear physisist is retired! What a nightmare
One of the coolest experements in high school physics was with a small radioactive sample (of what I don't remember) in a container chilled by dry ice. You could see fog trails left as the particles were emitted.
I'm afraid this thread is now officially hijacked.
Nom De rouge
I rest my case about "the guys in RED" and IMO Markus should be at least PINK.
BTW, I felt like I was cooked like a hot dog and I swear I thought I could feel heat. I was told I rec'd or was to have received 72 gys and they boosted my node area due to my 2 biopsied positive nodes.
Wow, flashback to Physics 101 (with a twist, of course)!
I think I am going to quit answering questions on the boards.... I just realized how dumb I really am. There are some really smart people here. No matter what color they are. Let's see, I'm no good at the warm and fuzzy posts, so that leaves me with stopping fights and handling the crazies that occasionally stop by.
Aw nuts, Brian, you're our fearless leader in all of this! In my opinion, you're the guy in Hero Colors.
[quote=Brian Hill]Let's see, I'm no good at the warm and fuzzy posts, so that leaves me with stopping fights and handling the crazies that occasionally stop by. [/quote]
You do this sooo well!!
I think the other members do a good job with the "warm and fuzzy posts", and you are certainly competent at "stopping fights and handling the crazies that occasionally stop by".
In addition, your posts share with us some of your vast knowledge and insights into this disease. This information is priceless! I don't think we expect (or want?) you to try to be "warm and fuzzy"!
Please stay healthy and happy,
Well this thread has wandered far away from Geri's post.... Let's give it back, Some people have really urgent dan IMPORTANT questions....
I'm not so sure about that "stopping fights" thing but you definitely are superb at handling the crazies. Also your posts are just as informative as the other Guys in Red so don't sell yourself short.
I know who the red guys are...but where and who are the aqua blue(Global Mod) and the green(Mod) guys?
Mr. Blue, Mr. Red, Mr. White, Mr. Pink...This reminds me of that movie "Reservoir Dogs"
should we get this thread back on track?
Yeah kinda like going thru an orange stop light.
Hey at least I'm trying to get you a back door color enhanced promotion!!
David what colors are they if you are color blind??!!??!!
Whatever colors you want them to be I guess?
Hi, Richard starts treatment Mon and we are both relieved to finally get going, but apprehensive about side-effects from chemo. The side-effects from radiation seem pretty uniform for everyone, but the reaction to chemo seems to vary with each individual. It's the unexpected that is so disconcerting.
Does anyone have recommendations as to what to eat a couple of hours ahead of time? I'll fill the anti-nausea meds while Richard is having the chemo and he will take them regularly so as to stay ahead of any nausea. I thought about a small amount of oatmeal, crackers and yogurt for snacks and plenty to drink. Are sports drinks and plain water a good choice? What about some peppermint-cinnamon tea? These seem like good choices and easy on the stomach.
All I can think of is that his body is going to be poisoned. I know it's a war and that at this point in time, this particular treatment is the weapon to kill the cancer. It all seems so barbaric. Do you think one day they will be able to use the body's own immune system to rid itself of the cancer cells? Why does the treatment have to be so brutal on the healthy cells? Almost 40yrs ago, my mother had a cancerous lump in her neck and they used radiation then. She had side-effects, but survived and died of other causes. The radiation is so much more sophisticated now, but still radiation.
I'm sorry to vent because we are very thankful to have a positive prognosis, but if I was a conspiracy nut, I would think the drug companies and the powers that be aren't making as much progress as they should be. Because of better treatment options many people with a cancer diagnosis are living longer, which shows progress, but they still aren't able to find a way to spur the immune system to heal it's self. Thanks for all the feedback so far and any thoughts or information would be appreciated. Geri
I have used the term barbaric to describe this Tx many many times. I didn't worry about surviving the cancer as much as I did surviving the Tx. The rad starts off slowly with the first few weeks a physical non event. As more sessions are had the rad seems to get worse and worse until it's side effects tail off several weeks POST Tx. The chemo's, usually Cisplatin, main side effect is nausea but if it is given in weekly doses, it can make it much more tolerable than the 3 big doese many of us had. Each of us can have different reactions during Tx so lets hope his are on the milder side.
Best of luck to both you and your husband tomorrow. If you already have the prescriptions from the doctor, you may want to get them filled now. I was given some of my anti-nausea pills right before the chemo was given to me. The side effects do vary from patient to patient with not just chemo but also radiation. Some patients sail thru it so easily without many side effects and some greatly suffer. I do think alot of this depends on hydration and nutrition. The more water he drinks the better.
Tomorrow will be a long day bring a book, magazines, cards, puzzle books or hand held games. Where I went, they had nice reclining chairs with warm blankets and tv's. They also came around with food and fed everyone snacks, drinks and lunch including the caregivers. Nutrition is a huge thing during chemo/rad treatments.
It really wont matter too much what your husband eats if the nasuea gets away from him. If he can tolerate a nice steak, a pizza or a chicken dinner let him have it, the more the better. In a couple weeks his mouth will get sore and eating wont be easy, things will taste bad and burn his mouth. Food texture will play a big part in if he can eat things. Honestly, you may want to save the oatmeal and yogurt for those times which are coming. His food choices will become very limited and you dont want him to hate pudding and yogurt now before he needs it daily.
Thru this ordeal, please always remember to have your husband chew and swallow something a few times per day everday. Also to stretch his mouth open as wide as possible. Its very important to do these things to prevent worse problems from rad. down the road.
Again, hope tomorrow goes well for both of you.
Geri, I have also referred to this tx as barbaric, not advanced medicine. A physician friend of mine had to make a decision regarding chemo for herself. She consulted an MD with advanced training in integrated/holistic/Eastern medicine. He told her that there is a Chinese saying: You have to fight poison with poison.
As Christine mentioned, we were told to fill prescriptions ahead of time, bring all the medicine with us, and nurses would direct us. Some meds are taken immediately before infusion starts. He had small amount of cold cereal & tea in AM, as usual.
My husband received IV steriods during chemo to help control symptoms. Nurses told us this would make him hungry and to eat anything that appealed to him. I went out to buy a turkey sandwich and he had no problem with it. The meds completely controlled the nausea.
The nursing staff and PAs were tremendously helpful with suggestions and support. Believe it or not, after the first chemo, I found the tx room relaxing. I trusted the staff and got a break from worrying about what needed to be done, as opposed to a trip to the hospital to change PEG, where I had to watch over everything. Lottie
Thanks everyone for your responses. Does the amount of chemo or chemo drug combos depend on the diagnosis? The MO said Richard was only getting cisplatin and I've noticed that many people get a combo of drugs or induction. He wasn't prescribed any meds ahead of time and the nurse said they would be giving him anti-nausea drugs before the chemo. I'll pick up his prescription while he's in treatment. He has chemo the first, fourth, and seventh week.
I know we are in for some very difficult weeks ahead, but I'll be glad to have this first day done. I'm sure I'll be asking many more questions as time goes by. Travelottie, did your physician friend have her conventional treatment? Thanks , Geri
Each chemo treatment consists of a cocktail of meds, not just the cisplatin. Bill's treatment ususally consisted of 8 - 10 bags of IV fluids and it usually took 4 or more hours to get thru all of those. Richard will receive antinausea meds, fluids to protect his kidneys, etc. Bill's list is as follows:
Aloxi, Potassium Chloride, Tagamet, Benadryl, Decadron,
Magnesium Sulfate, Lasix, Mannitol, Taxol, Cisplatin.
You will find that once the horror of the initial infusion day passes (I found myself squelching a scream that this could not be happening to us and holding back a major teary breakdown)that the infusion room is a place of hope and the nurses there so compassionate and helpful. They were our best allies for any questions and suggestions. Do ask them, they have seen it all. You will also probably be given samples of meds that can be used between treatments for nausea, diarrhea, etc.
Bill got to know several of the nurses there over the 8 weeks of treatment...he traded books with one and shared stories of family and hobbies. That was when he wasn't snoozing...that benadryl is one of the first meds they give you and it knocked him out so the first couple of hours went by in la-la-land.
Hugs as you start this journey - I know how you feel.
Deb, Thanks for your reply. Yikes! I didn't realize Richard might be getting a combo of drugs. The nurse told us 3-3/12 and then it's off to radiation. I'm sure they don't tell you everything, but our nurses seem very nice and compassionate. I'm trying to stay upbeat, relieved that we are starting, but dreading the next several weeks. We are at the mercy of our situation and the measure of our courage will be tested fully.
Thanks again for your input. It means a lot to hear from someone who has been through this. Write again if you have anymore info or helpful hints. Geri
I only rec'd Cis as my Chemo but I also rec'd fluids and anti nausea meds thru the IV at the same time. I'm sure if he was going to receive any other chemo they would have told you.
I did also have to take an anti nausea med (I believe Amend) one tablet for 3 days beginning the day of chemo, before I arrived, and for the next 2 days. Everything was fine the first bag but the 2nd and 3rd knocked me for a loop but by that time I also had many rad Tx's under my belt so it's hard to say if it was just the chemo or the chemo and everything else going bad.
I am still surprised they are going with the 3 big bags rather than the smaller weekly doses so many are getting now. Watch out for the ringing in the ears and tell them immediately if it happens. I would also want to get my hearing tested BEFORE Tx starts so that you have a baseline to measure hearing post Tx against.
Geri, I hope the day went relatively well for you and Richard. It is a relief to get started with treatment.
My friend, an OB-GYN, did have conventional chemo for breast cancer and has done well for 3 years now.
My husband, Bob, received induction chemo due to one large lymph node. Dana-Faber team felt his case was borderline regarding the need for induction because primary was low volume. He decided with local oncologist and Dana-Faber input to go for most aggressive tx. He has always been very healthy (no coronary,kidney disease, etc., so they thought he could withstand the tx. Was it all necessary - don't know...
Hi, Well, we made it through the first day. Deb, I had the same reaction you did and really had to keep it together at first. Seeing all those people sitting in the chemo room and realizing that Richard would be one of them was very difficult. Everything went smoothly and everyone there was very helpful. We actually felt fortunate that he is only getting cisplatin because many patients are given several chemo drugs with numerous side-effects. We went straight to radiation which went pretty quickly.
As soon as we got home Richard started his anti-nausea meds, rinsed with baking soda/salt water and applied aloe vera to the neck plus taking some high quality aloe vera internally. He will start using the biotene mouth products today or tomorrow. Maybe this is a bit early, but we want to get used to the routine.
I'm still confused about why some people have different treatment protocols when the diagnosis seems similar. The chemo seems to really vary.
Thanks to everyone who has posted with info. I'd love to hear more from all of you even though you've probably repeated yourselves numerous times.... Geri
I think the different treatment protocols are really based on the finer points of the pathology and while many of us have SCC on the mobile tongue, or the base of the tongue, the extent of the lymph node involvement is really what informs the docs as far as chemotherapy and radiation. For example, on initial exam, I appeared to have only one involved lymph node - making me a Stage III patient. But during my neck dissection, two additional nodes tested positive, pushing me into Stage IV and Erbitux was added to my treatment plan along with the maximum amount of radiation they could give me.
I know there are guidelines for treatment protocols depending on staging as Margaret mentioned. But the treatments still vary depending on the facility, doc, etc. It drove me crazy trying to make a decision as my research went several directions. Ultimately, I had to trust Bill's doctor to do the right thing.
Major hurtle...getting thru that first day. Now you can just go into "auto mode" 'cause that is what the next few weeks will require. Unless the chemo throws him a curve in the next day or two, Richard should be relatively OK for a week or two. I know I kept asking when the bad side effects would start showing because Bill was still eating and working during that time. The throat pain, fatigue, and crazily enough, hiccups came on suddenly in week three and Bill was on supplement thru his PEG exclusively by the middle of that week. I found myself just focusing on taking care of him...making sure he was getting enough calories and fluids (and swallowing a bottle of Gatorade Rain) each day. So we just went on routine...PEG feeding + water, radiation treatment, meds, feeding, feeding, radiation treatment (he was getting 2 a day), feeding, meds...you get the picture....one day at a time...checking off the calendar. It became a sort of a blur so I charted his food and water intake each day striving to reach the goal.
One of the main symptoms...fatigue masked what turned out to be emergent...at week 6, Bill started sleeping excessively. I had to wake him to go to treatment and to feed, but otherwise he was asleep. This went on for a day and 1/2 before I realized he was running a fever severe enough to do what we had been instructed to do...call the doctor. Please be aware of this and check Richard's temp if anything seems "off." Bill's blood counts were very low the last couple of weeks and he had developed an infection that required hospitalization for a few days. After he got out and finished his last 3 treatments, he hit the ground running and did not have the after effects that so many here have...I'm not sure what to attribute that to...his toughness, the extra hydration he received in the hospital, the antibiotics that cured the unknown infection...???? He was off the pain meds the next week and started eating almost immediately...maybe divine intervention but welcomed.
Hope this gives you some hope...you will get to the end of this.
I really can't believe this is happening so soon. Even with the compazine, Richard has thrown-up a few times since midnight. I have a call into the doctor for a stronger med and I'l talk to them when they get in this morning. This seems way to early to start with these symptoms and then have to get to the rad appt today. I'm very nervous about this fast reaction. How on earth will we make it through 7wks of this? I'm hoping another anti-nausea med will work. Yesterday, the nurses said to call if he vomited and they would give him another drug. Will they change the chemo because of this quick reaction? I'll keep you posted and if anyone has any feedback, please post... Geri
The docs have lots and lots of anti-nausea drugs to use. Actually, I'm surprised they even bothered with compazine, a drug which has never worked for me - not even a little bit.
Cisplatin is an incredibly toxic drug and they do expect a reaction. I sincerely doubt they'll change his treatment because of vomiting.
They needed to give him Emends. It's a one a day, three day treatment. Zofran is another he should ask about.
Regardless he must go thru with the radiation as this is a temporary adverse reaction to the chemo, not the rad and he can't afford breaks in his rad.
I was taking Zofran and another one (forgot name), before and after theCisplatin. I never had an issue but everyone reacts differantly. They normally have an assortment of meds to prevent vomiting. I also received some meds in the IV after the chemo bag. Be sure to let them know ASDAP, they want the patient to be as strong as possible for rads...rad is the key. Hopefully this issue will pass quickly.
Sorry to hear your husband is experiencing reactions to the chemo already. Try as best as you can to get the anti nasuea meds and fluids in him. Good thing he has the peg tube. Just remember for everything he throws up he needs to put back in, so keep trying. Unfortunately vomiting is a side effect to chemo and the docs probably will not change the chemo. Hope he feels better tomorrow.
Hi all, Well, things are getting better for us. I called the nurses and told them we wanted Zofran an Ativan. Things seem to be under control so far. Richard is drinking lots of fluids and will try eating a little later today. I assumed after all the research I did that the anti nausea drugs would automatically be given with the IV. Before his chemo began they gave him a cup of pills. I'm thinking that maybe that was the anti nausea medicine. I'm going to check with the doctor and make sure. We are going to insist that the meds be given through the IV and then he can take the pills afterward. Compazine didn't work at all and I'm really irritated that they didn't give him Zofran instead. He shouldn't of gotten so sick from this. He feels better and hopefully will be able to keep some food down. Did anyone have good luck with Compazine?
I had a bad reaction to Compazine. First it didnt work so they told me take more, use it every 3 hours. That turned into restlessness, I paced the floory unable to sit down or rest for about 48 hours. I was so exhausted, I walked around the house crying unable to sleep.
I was also given Zofran and Ativan and a few others. I remember the one pill was about $100 per pill. The nurses commented on it, they said I was awfully lucky to get that one. Cant remember which one it was or if it worked or not. I think the Zofran worked best for me.
With your husband being given large doses of chemo, it still may hit him in a few more days. Did they talk to you about "nadir" days? Thats about a week out when his blood levels will drop and it will make him feel lousy. Keep up the good work with hydration and nutrition. Pay attention to all the anti nasuea meds especially in a few more days, dont let him miss a dose.
Glad to hear he is doing better. Im sure you are relieved.
Christine, I noticed that you only had 2x cisplatin. Richard is scheduled for 3x and it would be great to only do 2x. Zofran is the expensive one and works good so far. How long do most people have to take the anti nausea drugs? Richard will keep taking them every six hours for a few more days, then try for every eight hours. He can go back to every six hours if needed.
Do people have to take these the whole time on radiation? The nurse said that depending on the individual diagnosis, Richard might not do the 3rd chemo. I'm not sure if I heard her correctly, because I was so stressed out on Mon.
Try to remember to take a pen and notepad with you to write things down. Or better yet, bring along someone to be your ears. Its so common to not hear everything they tell you. It can be very overwhelming.
I only had cisplatin twice. I was scheduled for 3 rounds but got so sick they cut it back. First dose was very strong and then the second one was cut down due to my side effects and third one cancelled.
Its really important to keep up the anti nasuea meds cuz just when you think its ok not to take them....WHAM!!!! Sick as a dog, and cant even keep the meds down. Thats just my story, not everybody gets so sick from it.
I did take anti nasuea meds the whole time of radiation and even about 2 weeks after. Treatment was pretty hard for me since I wasnt lucky enough to have a caregiver. Just remember everyone tolerates this differently. Just like oral cancer can be in different places and different stages, thats why so many different reactions. Hope tomorrow is a good day
Hi, Does anyone know from a technical stand point how long cisplatin actually stays in your body after each session? I know that there are side-effects, but how long until the drug is flushed from your system?
We tried the feeding tube for the first time today. Just started with 1/2 can to practice. Richard's RO was concerned with not eating much for a couple of days and told us to start using the tube. Luckily things have settled down and the zofran is working. Richard started eating today and if he keeps it down, we can add more calories tomorrow.
Can't answer the Cis question..just know that each treatment has a cumulative affect...lowering blood counts for sure.
Re: the PEG. Even better than the cans of supplement...get bunches of ounces of water thru that tube as well as liquids by mouth. That is just as important as the supplement, particularly if he has been vomiting. Of course you get some water in when you flush the tube before and after the cans of supplement, but the more the merrier (within reason, of course.)
When using the Peg it is paramount to continue to exercise the swallowing muscles each and every day. It doesn't take much inactivity before they will "forget" how to swallow.
On my post-radiation PEG, I continued to take water by mouth and also to take my daily meds by mouth so as to continue using my swallower.
Hi everyone... Since Richard was so sick from the first chemo, I requested Emend for the 2nd round, plus Zofran and Ativan as needed. I was surprised when the MO ordered it. Why didn't they do it in the first place? That's a rhetorical question because it's probably a cost factor. Compazine was worthless. So he goes in for his 2nd chemo on Jan 26th and we hope, at least, that his reaction is more tolerable.
We are hanging in there and Richard is eating as much as possible to keep his weight stable for now. We had an excellent day today with our RO and nurses. The RO came right out and said that the treatment would be successful in curing his cancer, but "horrible." They are prepared to do everything possible to help with the pain that's coming. The area at the base of the tongue is very small and they expect the node to be successfully treated. So, all in all, a good day and we are very thankful.
Before the radiation appt today, we met with the peg tube nurse to check the tube. Richard has a some red area on the skin that seems due to irritation. He's still pretty active, hauling wood for the fire, walking, etc. The nurse checked it out, flushed it and said it looked fine. She recommended some over the counter topical medicine. I know he'll probably hit the wall, especially by the 4th week, but why not do what you can as long as possible. The nurse had just removed another head and neck patient's peg a month after finishing radiation and he is doing great. She was so encouraging and it was good to hear that some people do really well without too many complications.
We are going to take one day at a time with no expectations positive or negative. I know things can change rapidly and we'll need to roll with the punches. I have a big mark on my calendar for Feb 20th when the treatments are over and Richard can start to heal.
I would like to know the difference in the side effects between Zofran and Emend. Did anyone get hiccups with Emend or have any trouble with it? Zofran is constipating, but very effective. Thanks for any responses.
I didn't notice any constipation from the Zofran, but
for me the Nutren 2.0 for the PEG feedings was constipating so I was also dumping in cup a day of plum juice which might have made the difference.
I don't recall any side effects from the Emend. And unlike Don, I had trouble with the 'canned nutrition' causing diarrhea, not constipation.
On my chemo day, I would get an infusion of Aloxi for nausea before they gave me my chemo. It supposively lasts for three days (I think). I had Zofran and Phenergan at home and I kept up with those religiously. I only had trouble with nausea at the beginning, before I started on the Aloxi.
And I'm with Margaret. Those nutrition drinks clean you out! I had trouble from day 1 in the hospital. At first my stomach wouldn't digest the stuff and they could bolus out the same amounts of liquid that they had put in, several hours later. And then once my stomach decided to start moving the food, it moved at lightning speed!
How soon did all of you start to get a sore throat? Richard's throat is sore at the roof of the mouth at the back. He said it feels raw. He did have a slight temperature last night that went away and the RO thinks it's a bit early for throat pain. She thinks it might be a cold virus and will check him tomorrow. I've had a bit of a scratchy throat myself. Nothing has progressed the way we thought it would, so he is probably just getting sore sooner.
I did not start getting a sore throat until about half way into tx. My mouth however was sore after a couple of weeks. I was not able to drink anything with chocolate at first and then pretty much anything at all besides water.
I didn't start having symptoms until well into my 5th week - except pink skin, but as I'm sure you have already found out, anything is possible because we are all affected differently. Towards the end of it all, I couldn't put anything in my mouth, including water because the mucositis was so bad. It felt like a million razor blades were in my mouth - but I kicked up the pain meds and made it through!
Love those pain meds because they can turn an ordeal into an inconvenience -- Of course, there're prices to pay in the form of constipation (they're giving me plenty of stool softener) and getting off the stuf (intend to taper down much better this time around!).
The sore throat and mouth sores are more often caused by the chemo than the radiation (especially early in treatment - the radiation side effect problems typically occur later in treatment). I was about 3 weeks into it when it started. Some here have reported a sore throat in the first week.
I just got caught up on the threads and had a few other comments:
They have fiddled quite a bit with treatment protocols. The NCCN Oncology Practice Guidelines, in 2003, when I started treatment were Cisplatin X3, every three weeks with the first application starting on the first day of radiation. They had very good (efficacious) results from this treatment protocol (although the toxicity from the Cisplatin was pretty brutal). Then they started experimenting with weekly, smaller doses of Cisplatin and also with hyperfractional RT treatments, in other words twice a day instead of once a day, but in smaller doses. Initial reports have been favorable for the new protocol and more institutions are using it. It's not so much that the odds of beating the cancer are improved as much as the side effects may be mitigated a little. But as has often been stated, we all respond differently to treatment.
I was scheduled for X3 Cisplatin ct but reacted so poorly (or conversely, so well) after the second one that they decided not to go with #3. I also read somewhere that 2X Cisplatin was as effective as X3. It obviously worked for me as I am almost 6 years cancer free now. Most MO's are adamant about completing all of the prescribed treatment protocols however. There is strong evidence to support that persons not completing their treatment prototcol have worse outcomes. Conversely, the radiation IS the primary treatment modality and the Cisplatin is an adjunct to it. It has been reported that tha addition of Cisplatin can improve survival odds and additional 13-15% over radiation alone.
Constipation: I have no experience with Emend but I don't believe that the anti-emetics will cause it. It's the narcotics that are the main culprit for that. Staying well hydrated is key for constipation management as well as Senekot with stool softeners and also speak with your nutritionist. Preparation H will also help. It can be managed - usually better. Honestly it was one of my worst experiences in the whole tratment process. It can also cause nausea and vomiting when homeostatis is stopped. It is important to get a handle on it. I spent more time curled up in a fetal position on the bathroom floor as a result of the constipation than any other reason.
Watch that temperature - if if exceeds 100.5 degrees call your doctor or go to the ER immediately.
Another tip for you, if he is dehydrated, make an appointment and get rehydrated in the infusion unit rather than going to the ER. It's twice as fast and twice as comfortable.
Also, Ciplatin does a number on the stomach so he should also be taking Famatodine (Pepcid AC).
All of this is still a simplistic way of looking at and describing the treatment protocols as cancer is a complex and multidimensional disease.
My 2nd Cis even with the Emends was not as "pleasant" as the first and you also need to keep in mind that he will have had 15 rad Tx's to go along with this so hope for the best but don't be crushed if he still gets sick. It was around this time that things slowly started to go south for me. Also make sure he pays attention to a slight ringing or hummmm or buzzing "noise" in one or both of his ears. That means TROUBLE with Cisplatin and you should let his chemo doc know right away as they may want to switch him to Carboplatin for #3.
Many thanks everyone for all your responses. Richard's sore throat is better this morning, so the RO was probably right about it being a virus. Especially with my scratchy throat. Anyway, it's a relief and hopefully we'll have a good day today. Gary, how do they determine if you get the 3rd dose of Cisplatin? At radiation, they take x-rays frequently and the RO approves before the treatment. I'll ask when we go in today for more info. David, what does (70gy) mean? The RO said that Richard was getting 1600? and the limit was 7000? I'll ask today when we go in.
One nurse said that they will probably only change treatment plans if the blood work doesn't look good. Another nurse said that they might not need to do the third, depending on the progress of the radiation. I might of misunderstood what she said with all the stress of the 1st chemo treatment.
Can they tell if the tumor has shrunk during the treatments or do you go through it all and wait until you can be tested again? I feel like I'm going around in circles with my information. It's like I'll ask something , get some answers, ask more questions, then forget what was said. If you can think of any questions for me to ask the RO today, please post.
Richard calls me his guardian angel( a very tired one) and we have become so much closer through this ordeal. Thanks, Geri
Gary should be the one to answer the rad question but basically gy stands for a unit of radiation called a gray. One gray or gy is equal to 100 rads which I think used to be the way they expressed the rad units. SO 70 gy would equal the 7000 that his doc is talking about but I'm not sure where he's getting the 1600 from.
As far as the 3rd Cis, part of it will have to with how well he handles the 1st 2 because if he's really bad of they will not go for #3. I was borderline but they decided to torture me a little more. lol
The third ct Tx would have killed me for sure. I puked so much after the second ct that I polished my teeth, like glass, with stomach acid. Nothing worked, Zofran, etc. I ended up using compazine suppositories because I couldn't throw them up.
In the mid Tx point (3 weeks) I had a CT scan and the tumor had completely vanished - gone. It's pretty standard to have a mid point ct to make adjustments in the radiation treatment protocol. Whether that factored in I don't know. I think it was my over the top side effects from the Cisplatin.
Hearing damage from Cisplatin is very uncommon (actually rare) and some ringing and buzzing may be normal as your eustacian tubes get clogged up, etc. A head cold can cause many of the same symptoms. Especially as you get older, almost all of us have some tinittus from all of those rock concerts, etc. My ears are ringing right now. Being a musician hasn't helped. BUT - if you notice and sudden changes report this to your doctor immediately. I had many problems with fluid buildup which magnified the tinittus problem. Strangely, subsequent post Tx audiology tests actually showed an improvement in my midrange hearing response.
The bloodwork numbers will naturally crash as a result of treatment but only a doctor can say for sure whether this is an anticipated change or abnormal. My numbers were off for over a year. Fortunately one of the redeeming things about Cisplatin is that it doesn't mess with the bone marrow very much, unlike some other ct does.
In reference to the radiology numbers. It appears they are giving you the numbers in rads rather than Grays (Gy). 100 rads=1Gy. They haven't used "rads' in years. The following link explains the concept of ionizing radiation pretty well.http://oregonstate.edu/dept/radsafety/training/safety_info.php
The hearing loss may be very uncommon but I suffered permanent (so far at least) high frequency hearing loss so just like we talk about percentages, it doesn't matter how uncommon it is if your the one that looses the hearing so just be on the lookout.
The rad doc can see if the chemo/rad is working. They have screens that I used to walk by and saw my multi colored pics on it. My rad doc would mention that it was working and the tumors were smaller. I am not sure if thats from the pictures or by his exams, I only know I had 2 chemo doses.
I did question my doc several times about why no thrid dose and was told it wasnt necessary. One thing which I will never know the answer to is if I had been given the 3rd dose of chemo whould I have still gotten another tumor? Thats something that I used to think about, but it really doesnt matter, it happened and I have survived. I find it much easier to focus on the fact that I now have clear scans and am doing great. I dont want to worry you in any way, but I wanted to share this in case your doc would tell you no 3rd dose. Ask questions, find out why. Its so much better to fight it once than twice when rad usually isnt an option nad any surgery would be more difficult to heal from.
Hope the appointment was a good one and progress is being made.
Some of the newer RT systems like Tomotherapy and Trilogy take a daily CT scan. In addition to helping get precise alignments it lets the RO see daily changes.
Apparently these lower power daily scans don't have the definition of full power CT scans, but the ones the RO went over with me seemed fairly well defined (kind of like mini PET scans of my head and neck).
Hi, Thanks for all the feedback. Today, the RO prescribed some pain meds so we would have them ahead of time. I need info about what meds you all started with. Our prescriptions are for the Fentanyl patch and oral morphine solution.
These drugs seem so powerful that it's scary. Are there intermediary drugs to use before the pain is at it's worst? I didn't get a chance to ask the RO about meds not quite so strong. Aren't there pain meds you can crush and put into the Peg tube? I've read that the patch can be hard to come off of and I'm a bit freaked out about these heavy narcotics. Please post with some info.
They also put Richard on Diflucan for the beginning of thrush. He's being hit so early with these problems that it can get discouraging. Luckily, we are still out walking every day and he's eating like a champ. My stomach is in a knot most of the time because I want to stay on top of things, but have no control. That's the hardest thing for both of us. I know you all know what I'm talking about and I'm counting the weeks until this hideous treatment is over and the healing begins. Any info would be greatly appreciated. Geri
I used the Fentanyl patch and had no trouble coming off of it. I started using it in early August and I took myself off of it in mid-October when I came home from the hospital. They can step him down in dosage too to make it easier. It did not bother me a bit. I was also taking some oral medications until the pain from my tumor was so severe that they had no effect on it. I did not use any oral morphine, just what they gave me in the hospital. I did have a rinse that was Benadryl/Lidocaine/Mylanta that I used for the pain in my mouth. It is a swish and spit medication that numbs the mouth. I actually just dumped this down the drain today when I cleaned the fridge in the hope that I will not need it again.
I hope this helps. I do not know anything about Thrush. As a matter of fact I will have to look up what it is. Sorry.
"Love those pain meds because they can turn an ordeal into an inconvenience -- Of course, there're prices to pay in the form of constipation (they're giving me plenty of stool softener) and getting off the stuf (intend to taper down much better this time around!)."
You do have to love when you can get them...easier said than done...
I had hydrocodone (liquid and tablets) to take when I was at home and tramadol to take when I was at work for the beginnings of pain and discomfort. I worked up until my 4th week of IMRT and then hit a wall, but I have a very physical job where I have to talk alot! I couldn't explain things to my patients because my throat was sore and my voice gave out. I also had some stuff called MD Anderson mouthwash that was swish and swallow but it made me too sleepy to take while I worked ( 4 times a day).
Then when I stopped working they put on the Fentanyl patch, 25mcg then 50mcg for awhile then back down to 25mcg. I did have terrible withdrawals when we finally took the patch off, but it was after treatment had ended and I was not eating like I should because I didn't have to weigh in every week.
At the time I didn't
think to take the hydrocodone to help taper, I just took the patch off and thought I would be fine. Just talk to the docs about tapering the patch when you get to that point.( later
found out that there is a 12.5 mcg to step down to ) I wore it until mid December while recovering ,too.
Cold always felt good on my throat so I mixed ice cream in my Boost and Ensure plus and I liked raspberry tea up until my taste changed, now I can't tolerate sweet stuff. And you are right, you and hubby will be closer than ever during and after this journey. You guys are in my prayers.
My first round of treatment I had a terrible time getting off the Fentanyl patches. I was on 100 mcg's every 48hrs. I'm back on them again (same dose) for this round too.
The first time I suffered through a 'step down' program that lasted about 6 weeks and was awful. I have often said that the withdrawls were worse than the chemo and radiation (as bad as they were), and for me it really was true.
This time I'm already planning on discussing with the doctor a different plan - like where you're hospitalized for a short period but you come off the narcotics very quickly, over a few days I believe. I'm not sure what's available there but I know I'm not up for doing the 6 weeks of hell I did the first time.....wow.
the reason you have 2 meds is this.
1. The Morphine sulphate is a fast acting opioid for break through pain. Fast acting means it reachs full effectiveness in about 30 minutes - even faster if you have liquid form and faster than any other narcotic. Vicodin takes a full hour and is classified as a medium strength painkiller.
2. Fentanyl is for long term pain relief (pain expected to last a month or more). Use the morphine when the pain threshold exceeds that which is maintained by the Fentanyl. Fentanyl is the strongest synthetic narcotic there is - 100X more potent than Heroin. Follow the directions for use exactly and NEVER apply a damaged or torn patch. If all of the contents were to be released all at once it could be fatal. It is safe when used as directed.
Believe me you'll be glad you have it as treatment progresses. They always start with 1 25mcg patch and if that isn't enough then they will add another patch. I didn't need more than 75 mcg but some cancer patients have had prescriptions up to 500 mcg (like pancreatic cancer). We rarely see persons here using more than 150 mcg. DO NOT add more patches without specific clearance from your doctor.
When you start using more morphine, they'll up the Fentanyl dosage using a titration formula. Keep a log of all meds, food, water, temperature, etc. When you visit the doctor tell him what the pain is on a scale of 1 to 10 with 10 being unbearable and also the consumption rate for the morphine. Properly managed, pain should be 3 or less.
I would ask for a "swish & spit", "pink magic" compound solution as well. Typically lidocaine, morphine and benadryl. Even if he has a PEG he should try to swallow at least water to keep those muscles from atrophy. This will numb the mouth and allow him to swallow. Don't swallow it as you don't want to numb the gag reflex and aspirate liquid into the lungs.
Like Kathy I had Vicodin in the beginning when the pain was moderate but it is a liver killer if you have hep C, which I do.
that's an off-label use. The patches are supposed to be replaced every 72 hours. The therapeutic dose in your blood is exceeding the manufacturers directions for use.http://www.rxlist.com/duragesic-drug.htm
One must have a doctor planned, step down, phase out plan from Fentanyl or convulsions and death could occur. 6 weeks is about an average time to minimize the withdrawal. Properly done, it should be mildly uncomfortable for about 3 days.
I stand corrected some patients are on a 48 hour interval - ask your doctor why? It's not common here unless you are in some whoop ass pain!
Like David I had the buzzing and ringing and did loss some high frequency level hearing doing the 3x method.They did do hearing test before and after each treatment. It was agreed by all including me upfront to be aggressive and risk the small odds of hearing loss. I lost some hearing ( I have not noticed) but together with rad appears to have killed the cancer - good trade off. There never seems to be any sense of this stuff.....I had no real discomfort from Cisplatin, no vomiting, etc but had some hearing loss - go figure. The ringing/buzzing almost drove me nuts.
Pain -in the middle I took Advil, at the end some Oxycodone, usually at night. Even with that I had constipation issues, that can be a pain in the ......Take the stool softners
The pain medications were the only bright spot in my entire TX. Without them I would not have been able to swallow every day and drink my Ensure Plus nor would I have been able to drink all the seltzer water to keep hydrated. Oxycodone pills just were not enough, so I ended up on the Fentanyl patches also because of the tremendous pain from the radiation burns and yellow crusted neck sores. Both my RO and MO noted that the 72 hour replacement period on the drug package insert did not comport with a single one of their patients experiences. They started me right off with a 48 hour replacement timetable and by the end, I had two patches and changed one each day. I really hope your husband does not need so much, but don't hesitate to accept this help.
Of course it helped that in my hippie days I had substantial experience with Percocet, Qualudes, etc so I knew what to expect. Even so when I foolishly went "cold turkey" on the patches, I found out why they had prescribed extra oxycodene for me - but it only took two weeks to wean off to zero pills.
True enough Charm, previous hippie day experience did help me also in knowing what to expect from the pain meds. I really do not think that I would have been able to work as long as I did without them, although I have difficulty remembering most everything from July forward.
Yeah Gary it was the doc who had me go to 48 hrs. If I had it to do over again, I would have just dealt with the pain better and stuck with 3 days, it might have been easier to get off them. I should't say might....I'm sure it would have been easier...
The other important advantage of medication administration via patch is that the level of medication in bloodstream stays consistent. It also takes a certain amount of time to initially build up to a therapeutic level (I don't remember how long).
My husband needed 150 mcg at end of tx, plus liquid morphine evey 3-4 hrs. Without it he could not have functioned or swallowed at all, as Charm also mentioned. I would not hesitate to use this method, rather than looking for less potent pain meds. Regular use of stool softeners and Miralax worked to avoid major constipation for him. His dosage was stepped down without problems.
* Liquid morphine burns if taken by mouth - I diluted and put it in peg. Geri - you mention crushing pills. Crushing too many pills or adding liquids which are not formulated for peg tubes can cause clogging over time. I know many people do not worry about this and have no complications but it is a risk. I think this is discussed on this site under feeding tube info. We ran into problems with peg while crushing a very hard anti-viral med, after dx with shingles. Lottie
Thanks everyone for your comments. We've had a great weekend, taking 2-3 mile walks and going to REI. Almost like a normal Sat and Sun. for us. I do have a few more questions.
We are waiting for the Emend to be ready to pick up at our pharmacy. Are there any unusual side effects? I read on the internet about hiccups and hair loss. I'm thinking that the hair loss must be because of the chemo and not the Emend, but if anyone has any info about that, please post. Also, Decadron was recommended with the Emend and Zofran. This sounds like a good combo to try. I'm sure Richard won't feel well after the chemo, but I'm obsessed that we do everything possible to make it easier then the first time.
I would also like to ask anyone about how long it took after treatment ended before you started to get back to some normal activity. Not full speed, but able to start to do some things. We are avid hikers and bike riders and I remember David posting about his bike riding. David, when did you get back on your bike, even around the neighborhood? I know everyone is different, but Richard is in such good shape now, that I'm hoping that this will bode will for his recovery.
I'm also wondering about what the symptoms of BOT SCC with no nodes involved? If the node next to the TI mass hadn't popped up, we wouldn't of known anything was there. There were no symptoms and no visual evidence until the doctor did the biopsy. Even then, she had to really look to find it. Luckily, it was under a cm. but why would the node pop up if the tumor was so small? Also, I noticed that many people have the chemo even if the nodes are clean. Why do they put you through that if no cancer is detected in the nodes?
Thanks so much for any responses. I've learned so much here and will keep asking questions as we go through this difficult journey. Geri
My husband Ron had the same tx plan as Richard. Cisplatin x3 along with 7 weeks of IMRT. We tried many antinausea drugs. He did have some luck with Compazine in the beginning, but soon progressed to bigger guns including Kytril, which costs $100 a pill! Ron does not have prescription coverage, but thankfully we were given enough samples to see us through. He also got Aloxi before each Chemo, to help with nausea.
As your days progress, you will have more problems crop up than you know. It can be very scary, I know. Please make sure you are taking care of yourself too. If you need an anti-anxiety, do not hesitate to ask for them. They saved me then and I am now on them again.
If you would like to read our story from the beginning I do have a blog on the web. Just click on my name on the left and select Homepage. You can read what we went through. And please don't hesitate to contact me either here or my email if I can be of help at all! We are all in this together. I know that OCF saved my sanity more than once.
All my best,
I'm a little bit younger than your husband, which may or may not make a difference, but I never stopped some level of 'normal' activity. I'm not much for exercise, but I don't think I ever stopped walking, I did laundry for both me and my Mom, my caregiver during treatment as well as doing dishes and other household stuff. I also continued to care for my pets, with my Mother's help. I slowed down a bit, but never became bedridden or unable to care for myself.
Oh, and as far as Emend's side effects, I don't think I had any at all. Its fantastic stuff! My sister had good results with it during her treatment for breast cancer as well.
Hi again, The only problem Richard is having right now is Thrush. They put him on Diflucan. He started taking them on Friday for 10 days. I'm wondering if this will last through treatment or come and go. I've heard of Nystatin and oral gel clair. Is anyone familiar with these meds? Margaret, I'm glad to hear you were able to keep up with your routine and thanks for the feedback about Emend. Lori, thanks for your post. I'm pretty sure we will be dealing with one thing after another. Richard had such a violent reaction to the first chemo that it totally threw us. We were expecting problems, just not so soon. Geri
Rob had thrush from day three and was on Nystatin throughout his treatment.It came in the form of a liquid and a dropper,which was quite easy to use.
Robs pain med schedule was
Fentanyl,Morpine,Soluble Paracetamol,Voltarol.Different types of meds are required for different types of pain surprisingly,so one size does not fit all.Large doses of fentanyl or morphine DO NOT necessarily eliminate all pain types,particularly nerve pain like trigeminal neuralgia.
Thrush is something that is very sneaky. Ive had it 4 or 5 times sine OC. Be aware it can and does come back and it moves very quickly. Ive taken all those meds for it, they do work. My favorite is the lozenge that dissolves in your mouth, very easy.
I think a lot of us have struggled with the thrush. I had it several times throughout my first round of IMRT. I had both the Diflucan and the Nystatin and had success with both like Christine.
I was usually able to tell I was developing thrush by an odd taste in my mouth. The white patches are one of the symptoms but with the IMRT I had those all the time and they weren't necessarily thrush. But every time, I developed an odd taste in my mouth. I can't describe it but it was a noticeable change.
I also had thrush several times. My did not show up until 5-6 weeks into the action. I think where it bother me the most was after treatment. I was not feeling well, working some, putting off calling the Dr and did not pay attention to my body. Then I would need to call and get a script. I would have a funny taste and white patches.I responded well to Diflucan.
They told me at the CCC, that I held the record for being on high dose Diflucan (400 mg/day) for the longest time (although AIDS patients have way higher maintnance doses) of any of their H&N patients. I read somwwhere that the maintenance dose for thrush is 50 mg/day but I would double check that with a pharmacist. I tried Nystatin too but that orange flavored crap left a gross taste in my mouth -almost as bad as Boost or Ensure.
It's hard on the liver (I have hep C) so I take Clotrimazole troches now instead.
Well, after a wonderful weekend, we are back to reality. Because of 2 mouth sores, Richard will drink his first ensure+ and try the peg tube tonight. This seems too soon to be having this problem, but I'm learning to expect the worst and be happy for any good times. The RO gave him some oral morphine to use on the sores, but it doesn't seem to be helping. We will see her tomorrow and see what else we can do. Geri
Ask the doc for magic mouthwash. It has several names and combos. Mine was lydocaine, malox and benadryl. It helped so much. Just swish it around in your mouth a few seconds then spit it out. It will numb his mouth and give him some releif.
Geri I had the same "magic mouthwash" that Christine had and it was a big help.
Make sure he try's to swallow every day to keep those muscles in tone.
Another thing in case nobody told you about is stretching. Have him stretch his mouth open as wide as possible and hold it liek that for a few seconds. This needs to be done several times per day and a few at a time. Sounds simple enough, but without that he could develop some big problems with trismus. Trismus is where you are unable to open your mouth, its not fun, I have it. Seems like there is alot to do and I know it can be overwhelming, but swallowing and stretching are very very important for his future.
Re mouth stretching....I found by controlling my yawning I could stretch my mouth open as far as I wanted and still exercise the muscles.
Hi, I had a question about the anti nausea meds. Did anyone take their meds in pill form before the chemo or only by IV? Richard has his 2nd chemo this Mon. I requested the Emend and the MO ordered it, so we do have that drug, along with Zofran and Ativan. The Emend is listed as $345 for 3 pills! We only paid $35.
Did any of you have a prescription for Decadron to take at home? That drug would be the only other one I would request. Maybe this is overkill, but Richard was so sick the first time that I'm bound and determined to have all the meds available. At least I'll know that we did everything possible to help with the side effects. I only wish the doctor had prescribed all of this the first time. Geri
Richard should be getting an infusion of anti-emetics before the chemo.
There should be three bags hanging there. The large one is for glucose infusion, the 2 smaller ones are the chemo and the antiemetic. They should hydrate him first with the glucose, then the anti-emetic and finally the chemo.
According to the manufaturer of Zofran it is only effective 60% of the time and has a limited time span for effectiveness so Richard should have different anti-emetics to use. Zofran is typically good for about 5 days then you need to switch for a while. If he is too ill to keep anything down then there is always Compazine suppositories.
Chemo also does a number on the stomach so industrial strength Pepcid AC (Famatodine) is also necessary. The nausea thing is a tough issue. I never overcame it and they had to shorten my chemo protocol from 3 to 2 Cisplatin infusions.
Keep after the doctors for solutions.
Bob's chemo regimen:
Emend, taken immmediately before chemo. We were told to bring the Emend with us to tx., but NOT to take it until cleared for chemo. It is expensive and insurance will not pay for another 'scipt if chemo is delayed/cancelled.
Decadron 4 mg on day 2, 3, & 4 of chemo.
Kytril (anti-emetic) and Ativan (anti-nausea and anti-anxiety).
In addition, as Gary states, there were several bags for hydration. IV steroid and IV anti-emetic meds were also administered routinely. Lottie
Hi, Thanks for the responses. I read on line that Decadron and Emend can interact. Has anyone heard of this? I assumed they were taken together on the first day of chemo. The only thing Richard was sent home with after the first chemo was compazine. I guess I'll have a few questions for the doctors before the second chemo on Mon. Any feedback would be appreciated. Geri
Ive taken Decadron, Emend, Zofran, Ativan, all without problems. They did help, but I was still very sick. So sick from cisplatin that I ended up dehydrated and got a couple hospital stays. My third round of cisplatin was cancelled. Once the nasuea gets away from you, its impossible to control it.
Compazine caused me alot of bad side effects. I couldnt get my nasuea under control, I was so weak and tired but couldnt lay down to rest. The compazine made me pace the floors, it was awful. Please remember, everyone reacts differently to these meds and to chemo. Hope your husband is doing ok.
Hi, Richard had his blood work done today for the chemo tomorrow. His WBC is down to 2.7 from 4.8 on the 19th. The neutrophils % automated count are 48 compared to 69 on the 19th and 54 on Dec 16th. Are these numbers too low for the chemo tomorrow? His blood work has always looked great before now. I depend on all your feedback so please post with info...thanks, Geri
It's pretty normal for the numbers to start crashing the further along he is in treatment. If he is like most of us he will be anemic and have low RBC as well at the end of treatment. His immune system will be toast for about 3 months, then it will start to recover. As far as RBC - it takes the body 120 days to replace the RBC. It it gets really bad they may give him Procrit or even a transfusion. The RBC crashes because the blood passing through the carotid gets zapped during RT. White cells are supressed by the ct.
The MO will make the call.
My experience was very similar to ChristineB's, with the excpetion of the Compazine - I had some mild success with that.
Hi all, Richard made it through chemo on Mon with minor side effects. It's amazing how the right combo of drugs can help. The MO also lowered the dose of cisplatin to 110 instead of 196. His total number they looked at for the WBC count and all the components was 1296 and the threshold is 1200. He was just over the threshold, so they went the lower dose. We were relieved that they didn't postpone the treatment.
Today will be the 18th treatment. He missed two because the machine needed major maintenance. So we will be a little over half way through with two chemos down. Thanks for all your info...Geri
Good news Geri. Glad that they have perfected his drug combination now and I hope that the lesser side effects continue. Enjoy your weekend.
Hi Everyone, Things are going well for Richard at this point in time. He is still managing to eat soft foods along with using the Peg tube. His taste is gone, but he wants to continue to eat as long as possible. We have 12 more radiation treatments and 1 more chemo to go. The RO told him he was doing "splendidly." She must see some pretty bad cases. Every waking hour is spent keeping track of calories and nutrition. We are also walking and doing things around the house. All and all on an even keel.
I have a question for those of you who had cisplatin for chemo. Do you know your dosages either weekly or the 3x cycle? Richard dose was lowered for the 2nd chemo and the RO said that this is normal to do after the the bigger dose for the first one. It's probably because of the blood work, but the MO said that his 2nd dose was a therapeutic one and it was fine to lower it. I was just curious about how much the weekly dose is and what others received. His first dose was 196 and the 2nd was 110. Any feedback would be appreciated. Thanks, Geri
Bill received Cis weekly - 40mg until the 7th week and it was lowered after he was hospitalized (fever, neutropenia) to 30mg for the final treatment.
Glad to hear things are still relatively good..sounds like he is tuff and he has a great nurse! The fact that he is getting optimal hydration and calories is most probably helping him the most. Hang in there, you are counting down to the end!
Deb, Thanks for your quick response. I noticed that they gave Bill Taxol along with the cisplatin. Maybe that's why his dose ended up being less then Richard's will be. Cisplatin is the only chemo drug he's taking. I guess the treatment for everyone is different depending on each case. The tumor is very small, but a node is involved. It's encouraging because we can feel the node changing and getting smaller. Only time will tell how things will work out. It sounds like your Bill is doing great now. Thanks, Geri
Yes, Bill is doing super...eating most anything, taste getting better but not perfect, saliva is not great, but he is coping with lots of liquids. His weight has stayed steady at his post treatment amount of 195.
The difference in the Cisplatin amount I am sure has to do with the 3 dosage plan that Richard is on vs. the weekly plan that Bill had. I had to ultimately lay it in the hands of his MO...after we made the decision to go with Cis (even with Bill's hearing loss) and we got the blessings from the CCC to receive treatment from our local RO and MO, I decided I had done all I could to get the best treatment and would trust his doctor on the details of the treatment plan. I knew that it lined up with what I had studied and felt good about our decision.
Stay strong. Get a few minutes to yourself. Take one day at a time....
Glad to hear your husband is still eating by mouth. Thats very important to continue this even without being able to taste. Sounds like he is doing very well. You are a wonderful caregiver
Sorry, I cant find my old calendar where I wrote my chemo dosage on. I do remember mine was similar to what you mentioned. The first dose was around 200 and the second one was around 140. My third dose ended up being cancelled. If I find the info, I will repost it.
Deb, I noticed that Bill had his Peg tube in for three months after treatment. Did he have trouble eating right away? The Peg tube nurse told us that they could remove the tube when Richard went a month without using it. I'm assuming that it is a gradual process to be able to get enough nutrition by mouth after treatment ends. I'm so glad our RO insisted on the tube. Also, what type of follow up tests did Bill have? I know we will both be very nervous about the first tests after treatment ends. Thanks for all your feedback. Geri
I had 3 of just the Cis. The first was a non event; the 2nd was pretty bad and the 3rd was ugly but I'm sure the amount of radiation I had received prior to each one and the general state of my body both mentally and physically made the difference
Back in the day they weren't using the weekly option plan but I would have demanded it today subject to the MO convincing me otherwise..
We return to Moffitt Cancer Center for each of Bill's followups. He saw them on October 31 the first time after his treatments ended on Oct 1/07. That visit consided only of a visual and tactile exam. The next exam in early January of 08 consisted of a PET/CT and then a visit with the doc for her exam and prelimary results from the scans which she was thankfully able to pull up electronically. It is such a help to have the doctor give us at least a preliminary the same day and keeps us from worrying so much waiting for the official report. He has since had one more PET/CT ..August that was also clear. As you can see, he is being checked quarterly.
RE: the peg. Bill was able to start eating by mouth within a week of his end of treatment. I contend that he received heavy duty antibiotics and hydration during his hospitilization that last week of treatment and it helped his recovery because once out of the hospital, he started getting better immediately even with the spector of three more radiation treatment (actually 6 more because it was two a day)and one more chemo. By week two post treatment, he was eating totally by mouth. We kept the PEG in at the suggestion of Moffit's doctor until after his first scans, but when they were good, she sent a nurse in and yanked it that day. We were both kind of shocked that they offered to do it but it was nice to get it out. He still has his mediport...we keep dragging our feet scheduling to get that out.
I still remember how happy we were to take the two cases of Nutren and all the peripheral tube feeding equipment to our RO's nurse to distribute to someone who needed it. It was like graduation day!
The RO wants to have Richard try 2 infusions of the Erbitux instead of taking the 3rd Cisplatin. We are going in on the 17th to see the MO and Richard will probably start this coming week. The RO wants to make sure the node totally shrinks away and indicated that this change in treatment should work. The node is quite a bit smaller, but still not totally gone. She also mentioned that there could be scar tissue. He has 7 radiation treatments left, so they probably will fit the 2 Erbitux infusions in.
It was disappointing because we jumped to the conclusion that the treatment isn't working. I felt better after talking to the RO yesterday. She said that in some cases it can take a little longer for the node to shrink and since the dose of Cisplatin can be so hard on the body, she thinks he will respond better to Erbitux.
Has anyone had a similar experience? Should we get anything ahead of time for side effects from Erbitux. With only 2 infusions, the RO didn't think the skin reactions would be too bad. I know that I've read about immediate skin reactions so we will have to wait and see. I wouldn't have thought anything about this change if they had used the two drugs to begin with, but changing towards the end is disconcerting. Things are probably fine, but what a roller coaster ride this whole ordeal is. Thanks ahead for any feedback. Geri