Praveen, Radiation and chemo can be combined in many different ways. An individual's treatment plan will have little in common with the next person's plan - they are not comparable. I had a series of daily chemo treatments for several weeks. Then twice daily radiation with concurrent chemo mon-fri, week on, week off, for 12 weeks. Different clinics often have their own approach to combining these therapies. Ask the docs lots of questions and let him/her defend their treatment decisions, but avoid the temptation to compare your brother's treatment plan with others. It sounds like the docs have a rationale for their decisons about your brother's care. Thats what counts. Luck to you and your brother. Be strong. Tom J

Thankyou all so much for the responses. I will talk to the doctor soon and let you guys know what he says.

thanks
Praveen

I'm glad to see this thread, as I just finished my 3rd week of radiation and will be getting the 2nd chemo round in 3 days.

So far, the worst of the radiation has been the mouth/throat soreness. The edges of my tongue were severely nuked because the bite stick forced the outer edges hard against the inside of my lower teeth, just chock full of fillings bouncing the radiation right into my tongue. I used several pieces of gauze to try to buffer things, but it didn't do any good.

In desperation, I asked the RO about using a plastic mouthguard (like the type used at night for teeth grinders). Found an inexpensive one at the local drugstore, you just heat it up, form it to your upper or lower (designed for uppers, but works as well on the lower, where my problem was), and away you go. The doc looked it over and approved it. Fits comfortably, even with the bite stick, and the clear flexible plastic covers all the metal, protecting my tongue along the sides. Thought this hint might help someone else too, but be sure to ask your RO first.

As for the pain in my tongue and throat, the RO gave me a prescription for liquid painkiller (codeine based, I believe, and not much help except to make me sleepy) and for something called Barcus Solution. Rather thick, I can taste clove in it, and it has instantaneous numbing to the mouth and upper throat (you swish it around in your mouth, then swallow it). Seems to help reduce tongue swelling, too. I can't find any medical reference to this stuff, so don't know what all is in the compound. No info on the pharmacy sheet that accompanied the Rx either. But it helps, at least so far, and another good thing to ask your RO for.

Biggest surprise was I'm losing my hair by the fistful now. I first thought radiation overdose, but they insist I'd only likely lose hair in the areas they "shoot" through, like in front of the ears. Possible it's from my one dose of Cisplatin three weeks ago, I'll have to ask this coming Monday when I do dose #2.

And though I pretty much sailed through the first chemo, I'm seriously thinking of not doing the final 3rd round. If my mouth/throat is this bad not even halfway through my 7 weeks of radiation, what will it be like at the end of those 7 weeks when they want to add even more insult to injury?

In any event, if you have problems or questions, keep asking your doctors/nurses/techs!! Sometimes they're busy and don't want to spend the time, but you have the right to the information and don't have to suffer in silence.

Sharon
(T2 widsom tooth area on left, n0 soft palate mostly on left, but they're radiating 3 areas: left and right wisdom teeth areas, soft palate, throat/esophagus down to the first couple of inches of my lungs)

HI Sharon,

Thanks for sharing your experiance even though you are under going this nasty treatment. Good luck and god bless.

thanks
Praveen

SharonD: My husband finally was relieved of pain when he received 150 mcg of Fentanyl intradermal patch. Before this he was receiving Roxicet (liquid form of Percocet, which seemed to be covering the pain all the way up to the last chemo treatment).

In addition, once the Fentanyl kicked in (which is 24-30 hours after application of the patch), a liquid form of morphine called Roxenal finally worked for him.

As I posted earlier, he did end up in the hospital because he was so dehydrated from not taking anything in orally and the pain was so extreme. At this point, the full affects of the Fentanyl had not yet kicked in.

While in the hospital, he was given Decadron (steroid) which helped very much in decreasing the swelling inside of the mouth.

To give you hope, just 2 days after the completion of his treatment, he is back to speaking well, drinking boost, eating soup and taking full liquids with pain well controlled.

If you do anything, don't ask, but tell your doctor you need something better to control your pain!

Hello All,

I am very happy to tell you all that my brother got all clear in his recent visit to the hospital. After going through 4 chemos/30 radiations, he recoverd from the big C.

Doctors told him that the ultra sound/ X-ray reports are all clear. Now he needs to do the routine 6 month checkups. May be they will do the PET/MRI scan after 6 months but for now they are confident that every thing is OK.

At first I was really scared and I have no idea that the doctors in India will be able to treat my brother's advanced SCC, but they proved that they can. I spend about 10K USD for the whole treatment and I think that is the best money I ever earned in this country.

I am really really happy yesterday when I heard this news. Thank you all for your great support and this site helped me a lot in terms of coping up with the situation.

thanks you all,
Praveen

My husband had three weeks of chemo and three weeks of radiation and was just in the hospital for 10 days because his mouth and throat were so bad. He was getting Cisplatin and Erbitux. The doctors actually decided to stop chemo as radiation is the primary treatment. Based on the fact that he does not have a large tumor they are trying to shrink, stopping chemo shouldn't be such a deal breaker. He did have a PEG tube put in as he has lost 30 pounds and was not eating. So far the tube seems to be working well and he is now eating only through the PEG tube. He told the doctors he had been in the worst pain of his life and they had to do something so they concluded he should stop chemo. He has three weeks of radiation left and starts radiation again today after a two week break. He is terrified about the side affects this time around.
Heidi

Heidi, it sounds like he is going to be one of the unlucky in terms of getting walloped by side effects. This will be tough for you both to get through but the PEG will help alot.My suggestion to you is that you ask him continually to tell you if he is in pain and, if so, you insist on adequate medication for him. In our case, the radiation was much harder than the chemo [Carboplatin\Taxol and now Erbitux] I feel for you- this is a really hard thing to watch your husband go through. You are going to have to be very strong. Keep posting and e-mail any of us that you think might help you cope. Amy

Hello Heidi,

You are right regarding the chemo. Doc might stop the chemo for a while if the side effects are untolerable.

Do not worry at all. My brother took over 7 months to complete his 4 chemos along with 30 radiations, but at the end things are looking good. He also lost 35 pounds during his treatment but now he is regaining his weight. He also suffered a lot with severe mucositis which kind of suspended his chemos.

Hang in there, your husband will get better soon
and he will get all clear.

thanks
Praveen

Heidi,

Tell him to try to get the strenght to finish his Tx as fast as possible. The reason the docs don't like to break is that it gives the cancer cells more time to heal themselves.

Studies are being done as we speak to increase the rad dosage; double up some days; increase the number of rad Txs received and shorten the time frame this is all accomplished. All of this is done to reduce the ability of the cancer cells to fight off the attack.

I hope they also remember they need to keep us alive at the same time.