My first RAD treatment today. Yes, being bolted down under the mask is frightening, but I did a lot of deep breathing and pictured my 8 month-old grandson smiling. I have to say it turned out better than my panicky anticipation. I mentioned in my introduction posts that I freak at the thought of restraint. I was so pleased to be told today that the restraints that pulled my shoulders down for the mapping scan aren't needed for treatments. That eased my mind a great deal. Back again tomorrow, of course. Wednesday is round one of three chemo treatments. Not sure why they said to expect to be there all day. HAve to get RAD again at some point. They'll work it out. After effects of the first treatment are slight if at all. I know this will change.

The chemo will be delivered slowly. You may also be given an antihistamine and/or an anti-emetic prior. All that takes times. Once the chemo is underway, you can go for radiation will the chemo drip in your arm. You just bring the pump and bag of chemo with you. My husband was actually made to stay a night at the hospital when he received his chemo. But I am in Canada and the protocol is different.

All the best to you. If you are nauseous at all after the chemo, make sure you take the anti-emetic you have been given to the home asap. All the advice we received said to stay ahead of the curve and not let the nausea take hold because that will make suppressing it a lot harder.

Im so glad to hear your first rad went well. I know you were apprehensive about being confined. We always fear the unknown.

The chemo given in the 3 big bag method usually doesnt have immediate side effects. Make sure you drink extra water the day before (tomorrow), day of and day after chemo to flush that poison out of your body. Even though they will give you extra fluids before and after chemo, you still will want to add more water those days. This is very important to your kidney function.

Dont forget about notifying your doctors if you experience any differences with your hearing after your first chemo.

Good luck!!!

Christine, Gloria,

Once again let me express my gratitude for you and the whole forum here. Special thanks for the tips on chemo. The MO is wonderful, but there hasn't been nearly as much info ahead of time. So without you, I'd be going in totally blind tomorrow. They called me up there yesterday from RAD, but it was pretty much "OK, we'll see you Wednesday". Onward and upward!

Trevor, this is why we are on the forum -- to help each other on their cancer journey. We weren't given much info either, whatever I told you was gleaned from my experience as a caregiver for my husband. Just remember that you will probably feel awful for a couple of day after the infusion, then you will slowly feel fine again. Keep track of your temperature after chemo to make sure you don't have a fever and don't get dehydrated. My husband felt dizzy and had a bout of cold sweat, and that caused him to become dehydrated. I know it almost sounds unreal but the RO told me that bouts of cold sweat can make a person lose a lot of fluids. If your doctor will order hydration in the hospital in between chemo and radiation, you will probably fare better.

Thank you again. A nurse in RAD said they will start with hydration in the morning. I was asking about coming to my daily RAD and whether it would be with the IV pole or what. She seemed to think they would send me to RAD between the hydration and the drug. I will surely stay aware of your tips here. I'm concerned about feeling horrible and getting to RAD Thursday and Friday, especially is there's dizziness as you mentioned. If need be I have the number for rides courtesy of ACS. ALso have Uber as a backup.

Please always remember everyone is different and will respond to things in their own unique ways. That said, the following is based on what I remember from 10 years ago when I first got sick and went thru rads w/ chemo....

The after effects of chemo do not usually appear for several days. Next time you see your MO (medical oncologist AKA chemo doc) ask them to clarify how to predict when the effects will hit from your dose of chemo. My doc had a calendar she would count the days and know exactly when the worst of the chemo would happen. Im going to guess about a week, maybe 10 days until it kicks in. Push those fluids and flush out the poison the faster the better. Taking in 64 oz of water a day for the next few days will definitely help lessen how hard the chemo hits you. If you have not already gotten prescription nausea meds talk to your doc so you are prepared. When you hit that certain day and are beginning to feel your stomach is doing backflips take that medicine and keep taking it around the clock for at least a few more days. Once you get behind on the nausea meds and nausea sets in its next to impossible to overcome the nausea enough to keep down medication. It may not be a bad idea to ask for small doses (like 5 days worth) of 2 different anti-nausea medication so you can switch off and on to always have medicine in your system to help with the nausea. If necessary, there is such a thing as a suppository nausea medication if you cant control your nausea.

Tomorrow will be a long day! Take a friend along to chat with, magazines, snacks, crossword puzzles, a book or kindle, maybe a ipad or tablet that has interesting things/games/etc on it to occupy your mind. Hang in there, every day of treatment is one day closer to becoming cancer free.

I don't have much to add to what was already said, but side effects of Chemo basically depend on the type of chemo given, chemo combinations, if with chemoradiation, dosage, speed of infusion or rate, and frequency, it's pretty much the same with radiation. Also factoring in is the patients general health, co-morbidities, surgery, prior radiation, age and a number of others. Basically, everyone is different, as said.

They usually have "Chemo Orientation" before or even the day of your Chemo infusion, and give you a handout of the drug, like I attached, and go over common side effects, not so common and rare side effects, and what to look for, basic remedies for minor ailments, contact numbers, etc.

Ask if your radiation center can debride your mouth out daily with the small pressure machine, forget name, and believe It was with saline solution, which made a difference with mucocutis and Thrush

http://chemocare.com/chemotherapy/drug-info/cisplatin.aspx

Well Cisplatin round one yesterday. All went well. Terrific nurse and pleasant surroundings. It was weird going down to RAD with the pole, but I have less panic about that now, too. I guess it's too soon to be feeling much after the chemo. Only thing noticeable are some spasm and hiccups. That could be something else. I have to look up the meds...Ondansetron, Aprepitant, and Dexamethsone. VA, of course, gets generics and not the brand names. I also got some reading material and that's the midday plan today.

There have been quite a few members who have mentioned hiccups so it could be related to treatments. Without a study conducted we cant be certain about the link to treatments.

Were you able to talk to your doc about counting down to when you will feel the chemo starts to give you side effects?

Onedansetron is generic for zofran. Its an anti-nausea medicine that tricks your mind into not noticing the stomach rumblings. I still take this occasionally, had to use it last night. Aprepitant is emend for nausea too. Dexamethsone is for inflammation. If I were you, I would watch the calendar and the day before you are going to feel the chemo effects I would start taking Onedansetron and Aprepitant rotating them off and on around the clock. The Onedansetron is a tiny little white pill that I dissolve in water and put thru my tube so I dont have to worry about trying to get tiny uncoated pills down by swallowing. I usually take 2 of the 4mcg pills at a time and do this up to every 4 hours. This is what I have found over the years works for me. Please understand, I have been at this for 10 years so thats a heck of a long time to learn about how to best manage my medications to suit my symptoms.

Good luck with your treatments.... pay close attention to counting your calories every day!

Thanks for keeping me on my toes. The nurse said the nausea would likely hit 2-3 days out. I'll try to get better info when I return next Wednesday for hydration. Second dose of Cisplatin set for June 5.

Dexamethsone (decadron), and other corticosteroids can induce hiccups, DIH, Dexamethsone Induced Hiccups, and from Zofran and other medications, including Cisplatin. The decadron can be stopped, changed to a similar type drug or dosage reduced. The same with other medications, if necessary, I would think. Some doctors give another medication to counter, such as Thorazine, and others. [quote][/quote] Here is a good article to help explain, and offers some helpful hints.

http://www.kantrowitz.com/cancerpoints/hiccups.html

Thanks, that's really helpful info. Unless they worsen, I feel like I can put up with hiccups. I slept well so they didn't interrupt. I feel surprisingly ok, allowing that side effects have yet to show strongly. RAD #5 this afternoon, then the holiday break.

Two weeks in and I have to say I feel fortunate. I assume it's a result of my previous good health that side effects have been so minimal. After the first chemo on Wednesday 5/24, I took the anti-nausea meds as directed for following 2 days (Thursday and Friday). I had a supply of all 3 standing by, but took none since I didn't feel I needed any. Other than the few spasms, hiccups and belching, the Cisplatin didn't seem to bother me. I'm detecting a bit of blurry vision. Otherwise fine. Radiation effects are building, but also seem less than what I've been told to expect. Of course, I'm aware that many of you have mentioned week 3 as when it gets rougher. Mostly I'm feeling continued soreness in my jawbone. RAD is focused in that area. Just in the last 2 days, though, the tastebuds seem to have rolled over and died. Depressing when water tastes lousy. Still, I know these are small complaints. Still, feeling better than I've expected to sure helps bolster my attitude. So does the fact that the mass seems to be shrinking considerably. The RO checked last Monday and agreed it was smaller and softer. Treatment is working and well. Rounding the first turn in this horserace and picking up steam.

That's great you're doing well so far! I haven't looked back in the threads, but I'm sure you received well advise here. Being you mentioned blurry vision, Chemo, Cisplatin is one, and other medications can cause various eye problems such as dry eyes, itchy eyes, conjunctivitis, even blindness in some cases like mine, etc. You should let your doctors know of any vision changes just the same as you would with changes in hearing and neuropathy.

http://chemocare.com/chemotherapy/side-effects/eye-problems.aspx

RO exam today. Things are proceeding well. Mass continues to shrink. Throat pain over the weekend became really severe. It was actually good news that she found Thrush. I got meds for it and glad that level of pain isn't what I have to live with for another couple of months. Appetite continues to be strong, but by Sunday evening, I cried out loud trying to swallow anything.

I also had GI consult today prior to scheduling PEG insertion. Doc there showed me hernia that I didn't realize I had. Not a small one, but if I do a halfway situp, this bump rises up from the sternum to navel like the alien from the movies was trying to pop out. I had no idea of this kind of hernia before. The GI doc said that would prevent installing the PEG in the usual way and are calling for a consult with radiology for them to do it...???? I was accepting the necessity of the PEG, especially over the weekend with that swallowing pain. But I'm thinking now I might pass. I'm 10 rad treatments in of 33. By the time I can get a tube, I'll be halfway or more. The meds are already working on the candida today and I can swallow much better than even this morning. I know things get harsher in this 3rd week. This hernia thing threw me. Asking for any opinions/thoughts from you knowledgeable folks.

Glad to hear the mass is starting to shrink. Always encouraging when you see results. I m a firm believer in utilizing every tool available to beat this disease and the effects from treatment last well beyond your end date.

I would see what radiology has to say about the hernia issue. If they can work around it, go for it. I have given you my two cents before on this issue and I never regretted the PEG. It made things dramatically easier, especially with the need for liquid intake.

Hope things continue to go well for you and keep fighting. It's a battle you can win! 🤠

Ed

Thank You again. Two of the rad techs talked to me for a while after today's treatment. Like loving parents they pleaded with me to get it and told me about some others who passed and then "hit the wall" as they call it. Pretty sure at this point that I'll take their advice and yours.

Is the consultation with radiology done with an interventional radiologist? It is different from radiation oncology. The intervention (in your case, the insertion of a feeding tube) is guided by radiation

Even if you are half way thru rads when you get your tube its ok. Radiation treatments get progressively more difficult as time goes on. The worst days are the first 2-3 weeks after rads ends. Many patients think when rads end they will get better quickly. Unfortunately this is not the case at all. Rads continue to work even after the treatments stop. Im glad you are doing better with swallowing now that your meds have started working for the thrush. If you cant get the regular PEG tube, there is a nasal tube that could work out as a decent option for you. The nasal tube is more of a temporary solution that can be inserted right in the doctors office.

If your throat gets sore you can always ask your doc for a prescription to get magic mouthwash. This is a combo of 3 meds. Mine was made of lidocaine, malox and benedryl. There are other combos but they all should be swished around in the mouth for up to a minute then spit out. The numbing is temporary and usually its enough time for the patient to be able to eat without being in so much pain.

Hang in there! Every day you complete your radiation treatment means you are one day closer to becoming cancer free.

From what the rad tech told me, the tube will be inserted using ultrasound. That's similar to the ultrasound method they used when doing my inital FNA biopsy. I did come away yesterday with Fluconazole for the thrush and what the RO called "magic swizzle". Label reads "antacid/xylo visc/diphenydramine". Sure tastes like lidocaine and maalox. Not a cocktail I learned in bartending school. It does numb the throat enough to swallow food. So far so good in that respect. For dinner I got some LaChoy Chow Mein vegetables and had them over rice with beef broth. Ate 2 large bowls and it was easy to swallow. I thought of the veggies earlier and remembered how soft and squishy they are. I'd rather have my own stir fry, but that will have to wait a while.

The magic swizzle sounds like what we know as magic mouthwash. There are many variations (and apparently many different names).

You are doing great with eating if you can still manage rice. Thats one food I used to love but its something that I cant eat anymore, the rice sticks and makes me choke. Pay special attention to your intake calories every single day and push to hit at the very least the minimums of 2500 calories and 48-64 oz of water. If you can do more calories like 3000/3500 that will only help you get thru this easier. I know Im a broken record about this, I struggled like crazy and I dont want anyone else to suffer like I did from the mistakes I made.

I was wondering how you managed with the chemo? Did you up your water intake around when you had the first dose? Have you noticed any chemo side effects yet? If so, what ones? Just curious as I dont remember you mentioning much about the chemo.

Hang in there, you really are doing very well so far

Christine, yes, I did ok with the rice, but I knew about the sticking. I tried some canned salmon last night and just couldn't. Not because of pain so much as it wouldn't go down, but seemed to lodge in the larynx. I gave up. Did all right with broccoli cheese soup. The broccoli pieces were small. I have to get more diligent about calorie counting. I don't know what I'm getting. I've been finishing the day with ice cream. That piles them up. Nutritionist recommended grazing and I that's what I do. She had VA send me a couple of cases of Glucerna and I have 2 cans a day at least. RO suggested putting it in my smoothies,

As to the chemo; at least the first round was nearly symptom free. I took the meds over the 2 days following. No nausea at all. I had a few spasms and the hiccups. I didn;t bother with the Ondansetron after those 2 days. Didn't need. I'm off shortly for hydration. Round 2 of Cisplatin will be June 14. We'll see if that tolerance holds up. 12 of 33 rads as of today. The throat is protesting. I don't want to overdo the swizzle, but little else helps. Still, feels like I'm getting through this pretty well.

I hated the idea of the PEG, but so looking forward to having it now. Most of you know the feeling, I simply cannot swallow. It's beyond description. Not just muscle pain from swallowing, but all tissue inside the mouth, tongue and even the sockets where molars used to live are all so irritated by anything...Jello, pudding, smoothies. No matter what. I've been woozy and dizzy from lack of food. A bit angry that someone was dragging their feet. I should have gotten it last week. This hernia business threw things off. Radiology will be fitting it on Thursday. Chemo #2 on Wenesday

TrevorL.

Been there. PEG, although not a pleasant thing, works. Two thing come to mind. First is hydration. If your not eating your probably not getting enough liquids as well. The PEG should solve this problem as water is pretty easy to do on the PEG. However, for the next day or two getting hydration through arm is something you should consider. A least for me, a couple a bags of water/saline had huge short term benefits.

Second, food or formula is another thing, Boost, or any other high cal supplement is basically vegetable oil and corn syrup. Your stomach may not like this mysterious liquid that just showed up in your body. I probably through up 12 times before I learned to go very slow. Do not just Bolus a can of food in a minute or two. Go slow, Maybe a can over hour. Don't be tempted to just jam it in. Having a bucket near by, just in case, is also a good idea.