Hello All,

This is my first post, although I am visiting this website every day for the past 10 days.

My brother who is 35 years old diagnosed with SCC on 25th Jan 2006. He lives in India. CT scan and ultra sound reports indicate 4 lymph nodes are larger than they should be. We are scared to death and the whole family is in a great depression and no one exactly knows any thing about cancer.

We met a surgical oncologist who is the best in the area and showed him the reports and the first thing he said the disease is very advanced. He says the floor of the mouth is also involved along with the lymph which makes things worst. We have no idea what he is talking about and he suggested my brother needs to under go a surgery right away, we met some other doctors for second opinion and they also suggested the same.

Surgery was on Jan 31 and they removed part of his tongue (around 30%) and they removed all the lymph on the same side of the tumor (right side). They removed some skin from his leg and used it to tie the remaining tongue to the floor of the mouth. They removed about 6 lower right side teeth prior to the surgery. They sent the stuff to histo-pathology and the reports came back after 8days of surgery and the reports says the margins are clear and 5 out of 26 lymph nodes are affected. Another thing the report says is

Praveen, although I am a survivor of stage IV oral cancer, I am not a doctor. That said, in the four years I have been learning about this terrible disease, what you outline seems like the aggressive treatment that would be prescribed here. I am impressed that your brother is being given drugs to protect his white cells, which are generally a casualty of chemotherapy. From my perspective, it looks like he is receiving very good treatment, which I hope will ease your worry a bit. Pleae feel free to ask additional questions. If you have not already explored other parts of this extensive site, I recommend that you do. Finally, please let us know how your brother is progressing, and take note of the fact that I survived stage 4 treatment and am doing very, very well today.

I'm also not a doctor but agree with what Joanna said--it sounds to me like he is getting the same protocol he would get here. Although I didn't get the drug they have here which protects white blood cells and I wish I ahd since it took a LONG time for my WBC to get back to even just slightly below normal.

I suspect the NATFOST is what goes by the name Amifostine here--the generic name is ethyol. If so, your brother may find that drug especailly hard to take. Many do. I took it for 21 out of 33 days of radiation and it made me throw up almost every single day I ahd the injection. biut it does help protect your salivary gland function so I felt it was worth the extra suffering at the time, except when I was feeling very sick from the chemo.

Anyway, I'm sorry that your brother has this terrible disease but with good treatment there is definitely lots of hope, all sorts of people are examples of that here. Let us know how your b rother is doing as he goes through his treatment.

Nelie

Praveen
You have such a handle on what is happening with your brother, I applaud that. I cannot see anything missing in his protocol.
I just wanted to welcome you to the forum, I am more in the cheerleading section, we have others much more qualified to answer your questions.

I think, when we immigrants come to the States we think because of the easier access to the Doctors etc. that means they must be better, not always the case. The rest of the world, in Europe and the East, are also making great breakthroughs , so have faith in his team they seem to be doing a great job.
Take Care
Marica

Praveen,
I have to agree with Joanna that the treatment protocol sounds as aggressive as possible. In some repects it sounds like they are using more advanced drugs then he would have received in the US, the Grafeel for instance (although they also have a similar drug in the US (the name slips my mind, "Nuelasta" maybe).

What Nelie mentioned about the "ethyol" (the generic name for Amofostine may be true - they both have the letters "fost" in them. Sometimes that's the clue. It's main use is to preserve the salivary glands but it can be a very difficult to tolerate treatment.

From what you have described in the way of his treatment your guess at his staging sounds about right. We have many advanced stage cancer survivors here - do not give up hope.

Praven,
You remind me of myself in June 2004 when my brother was diagnosed stage 4. I wanted to know everything and how to help him. Sometimes I am still feel like I let him down, not finding a cure. The main thing is that your brother know you are there for him and fighting just as hard as he is - and I know you are. Best of luck. I hope with all my heart he is one of the "success stories." I am so concerned as we see a greater and greater number of people in their 30's with this disease. Prepare yourself for the battle of your life and know my thoughts are with you.
Tonya

Hello Joanna, Nelie, Marica, Gary and Tonya,

Thank you all very much for the responses. You guys are amazing and this site is helping me a lot to cope up with the current situation.

My brother completed his first round of chemo and starting the second round from tomorrow. He is doing really well. He is actually in a much better shape than 3 weeks ago (right after surgery). We can understand what he is talking very well and he is taking some solid foods small portions at a time. He feels energetic and is able to do his daily routines.

They did 5 rounds of radiation so far. I just learned that they are using Linear Accelerator (LINAC) for the radiation and we do not know the dosage yet. I did some digging on this and found out that IMRT is bit advanced than this. The hospital did have IMRT and I have no idea why the doctor is not using it for him. Any ideas or comments.

I read in the forum that people have lot of difficulties arising from radiation. He is able to taste things ok and do not have much impact due to radiation. Is it common since he has only 5 doses?

Tonya, I would like to tell you some thing the doctor said. "The younger the age, the aggressive the disease is going to be and we need to treat it very aggressively" He says if the same thing happens in a 60 year old it takes very long time to go to Stage 4 where as for my brother it took only 2.5 months.

My brother is receivng excellent care from his wife, mom,dad,uncle and aunty. I am talking to him everyday and telling him all the success stories I found on this site.

thank you all
Praveen

hi praveen,

I am from India too and my father was recently diagnosed for Tongue SCC T2N1M0. I stay in Boise, USA. I would like to talk to you regarding the treatment and the doctor in India you consulted. Please provide me your contact detials by email. My address is on the index card next to my screen name. Your help is greatly appreciated.

Thanks,

Krishna

A BRIEF UPDATE ON MY BROTHER

Hello All,

My brother just completed 2 rounds of chemo (out of 6) and 6 of 30 radiations. He is very very week now and could not swallow even water. If he pours any liquid in his mouth it is burning like hell. Looks like the radiation started taking the toll.

He was admitted in a hospital because of throat pain and doc gave him some medication which worked ok.
Any suggestions to reduce his mouth pain?


thanks
Praveen

He is very early to get mucositis but sometimes a yeast infection -- thrush -- can hit you early on and it causes really bad burning when trying to drink anything, even water. Thrush causes little white spots on the soft palate and back of throat, and these come off if touched GENTLY! with a damp q-tip. They are really "colonies" of the yeast on top of the lining of the mouth. Mucositis sores are like canker sores, a lesion in the mucosa (lining) of the mouth and throat and will not come off with the q-tip. They cause real pain but not so much of a burning sensation as does thrush.

Thrush can be controlled with an oral rinse of Nystatin or a oral tablet, Diflucan. But it is usually a recurrent issue until after radiation ends.

Gail

Thanks Gail,

Actually you are right about the yeast infection. He did say that he got some white layer on top of his tongue and the doctors said it is infection by yeast (sorry, i forgot to mention that in the last post). They gave him some cream to apply on the tongue but since he was on chemo that day, he did not apply the medication. I will ask him to use that now and I will tell him about Nystatin,Diflucan.

Thanks again for your quick response.

Praveen

Hello All,

My brother finised 2 chemos and 10 radiations and he went to hospital yesterday to get the 3rd chemo. The Medical Oncologist told us to finish the radiation first (All 30) then he will plan the remaining four chemos (plan is 6 chemos total).

I called up the Doc yesterday to find out why and he said my bother has severe mucositis and he would like to wait until my brother completes his radiation. My brother is compaling about some kind of sores in his mouth that are causing sever pain (mucositis i think). They are giving him some medication to take care of them

I am scared now. Will this effect his cure?

I though mucositis is a side effect of radiation, but looks like it is a chemo effect.

Please advice.

Praveen

Mucocitis can be caused by either radiation or chemotherapy. Pain meds for it until it resolves on its own at the end of treatment are common, and necessary for most. Some people develop really severe mucocitis, and combined therapies can make it untolerable for them. No one knows what in any individual will effect a cure, and what will not. We try to tolerate the maximum treatments that can be used and all hope for positive outcomes. There are no absolute answers to that question.

Hi Brain,

Thank you for your response.

I just spoke to MO and he said two rounds of chemo is kind of standard in this type of patients and he is confident that the two my brother took should clear eveything. The MO wants to complete the radiation because it is the most imp thing at this point and chemo is multiplying the mucositis which he suspended for now.

My brother is tolerating radiation well and they gave him some medication which seems to be working fine for the mucositis. He is planning on completeing the remaining radiations.

The MO studided my brothers file one more time for me and said he is responding very well to the treatment and he thinks everything should be OK.

( I posted the same question in Currently in treatment thread and can be found at the following URL)

http://www.oralcancerfoundation.org/ubb/ultimatebb.php?/ubb/get_topic/f/7/t/000398.html

After reading your responses and talking to MO, now I am not scared and hoping for the best.

Thanks you all once again,
Praveen