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.

Hi Geri,

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,

Deb

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.

Geri,

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,

Deb

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.