Need Advice please

leema

I am 40 year old male diagnosed stage 3 base of tongue cancer in January. I was treated by 42 radiation treatments in 30 days and two full weeks of chemo. Sysplatin followed by 5FU. (sp?) Week 1 & 4... Judging by many of the emails I've read I am doing OK and most of my complaints are typical. I am actually ahead of the game on swallowing and can drink freely, soft foods can be swallowed but taste and lack of hunger is more of a problem. I lost just under 60lbs. I finished my treatments just over two weeks ago, April 4th.

As soon as I can tolerate 5 ensure shakes a day thru mouth the peg tube is gone. Right now I am up to 2-3 daily thru mouth. Taste, texture and thickness all that is preventing all 5 from going down. Sometimes it's just too thick and easier to use tube.

One thing I did not see was any of the physical problems with the rest of the body. I literally can only sit up a few hours a day and maybe an hour or so of slow walking and mobility. I am exhausted.

Is this typical? and what did most of you experience.

Also I have a ringing in my left ear and my ears in general have pressure, did any of you experience that?

ljoy

I had three rounds of chemo (Cisplatin/5FU)and 39 radiation treatments for tonsil cancer. I also lost 40 pounds of weight. I was exhausted when I finished treatment two and a half years ago. It took me a good six months to regain some energy and stamina. I took afternoon naps for a long time. It is necessary for your body to recover. My right ear had a lot of hearing loss but it has slowly improved. I still drink supplements to increase calories every day. I have regained twenty pounds.

I finally feel like I'm fully recovered. I still have some dry month and sensitivity to spices when I eat.

Hope this helps and my best to you for a full recovery.

TereB

I do not know about chemo but I can tell you that radiation affects your appetite and taste. It will improve little by little but it will take a few months.

I prefer Boost to Ensure, no good reason why. It goes down easier when it is cold.

It is normal to feel tired during and after treatment. I also took many naps which are good because your body heals while you sleep. Just do as much as you can, don't overdo it. Your energy will return too. It's just a slow process. Give yourself time to slow down and heal.

All the best!

BugHunter

I had stage 4 scc L tonsil. Had 8 weeks of chemo (taxol/carboplatin) and 6 1/2 weeks more chemo while getting 33 radiation treatments. I lost 62 lbs that I am still trying to keep off a little over a year later. I had a PEG tube for almost 6 months, I think I was getting addicted to the darn thing! Just over a year post, I am back to eating most things, spices are still a problem and I have to be very careful not to take too large of bites as I will still choke on them.
One thing I have found and I think most here will back me up, is that each and every one of us heals at a different rate (and slower than we ALL think we should heal)so it is hard to judge your recovery by what others have done. I felt like I was healing slower than most but have found I was ahead of the curve after being in here for a while. I used a product called nutren 1.5 instead of ensure. I found that if I drank it at room temp it was easier to go down and could get more down.

Best of luck!

BILL

jtjones56

First of all, God Bless You. I just went through the same treatments with the exact same diagnosis and finished my treatments in January. I thougt the chemo and radiation was gonna kill me!!!! Since then, I got a catscan in Feb and the tumor is gone!!! And went back for recheck last week and still doing good. It is a slow recovery process and I was getting discouraged until I got on this website and saw I was on target. I honestly couldn't even drink that many ensures at the stage you are at in your healing process (I never had a feeding tube) and I still was so, so weak until like March 1 (2 months after treatments ended). Now I am walking two miles a couple of times a week, doing a little yoga, back working part-time, and can eat many more varieties of food. I also lost almost 40 pounds and haven't really gained any back but I was told by my doctor that our metabolism changes so much and is out of whack for at least at year - but then, we'll have to worry about getting fat!!!!!!

Hang in there - I empathize with you. The hardest part, I think, for us is patience with the healing process but I am so grateful for every forward step I take. Hope this helps.

Jan

soccerfreaks

Leema, congratulations, first, on your survivorship and your "get 'er done" attitude! Before you know it, most of your difficulty will be behind you, it sounds like, and you will be wondering why you ever wondered.

That said, I note that you describe yourself as 'ahead of the game' and, like most of us, want to evaluate your progress based on what others have done.

I think that is a mistake. As someone else in this stream points out, you should not evaluate your own progress based on that of others.

In your case, you have been through a bit more than some of the others and a bit less than others. And saying that doesn't even take into account your age, physique, habits, etc.

Here's what I'm saying: It is not a game.

I feel like I can get away with that because it has been MY erroneous attitude in the past .

Please remember that your goals are to get healthy, 'weightful', and cancer-free, not necessarily in that order.

Losing a peg tube is down the list a ways.

Re the fatigue and the apparent lack of body strength, leema, you have had at least two doctors do their very best to try to nearly kill you . Give yourself a break .

Radiation only seems like nothing when you are going through it. Chemotherapy doesn't hurt, necessarily, when the needle is in your arm and the bag is dripping. But cumulatively, these bad boys are designed to kill.

If you are tired, they have done their jobs. Give yourself a break. Take it easy. Personally, I had some surgery to go along with my chemo and rads, and still did not have the fatigue you are describing. It may mean that you have very low white blood cell counts, and I assume that your docs look into that (through blood withdrawals) when they see you. If they do not, ask them to do so. They have stuff to fix that, or so they tell me. It may improve your fatigue factor.

Ear ringing....I have that on occasion, still, but always thought it was a product of my hippie youth and never gave it much worry .

But it IS another common effect of chemo, and one they want you to tell them about, so tell them about it.

Good luck, leema. Good luck with getting rid of the tube, when it is right to do so (I would err on the side of caution). Good luck with your eating and drinking. That is huge!

Most of all, congratulations on your survivorship! You are competing only against the toughest opponent you will face, leema. It ain't me or anyone else on this site. It is cancer. Concentrate on beating that bad boy, my friend. Everything else will take care of itself.

Joe

jkinobay

As usual Soccerfreaks is right-on with his comments and advice. I would only add one thing based on my personal experience which was similar to yours but about 6 months previous to yours. At the end of Rads my Oncologist told me that the radiation continues to "work" actively in your body for 6-8 weeks AFTER the last treatment. Much of what you describe is probably due to that. Be prepared that symptoms and side effects may not improve significantly for the first couple of months. At about the 90 day mark though you should notice having turned the corner with respect to all that you are currently experiencing. A friend I met through a local support group and who is about 18 months ahead of me with nearly identical diagnosis and treatments told me that it is about a year post-treatments before you feel near "normal". He said though that it would be a new normal and perhaps quite different from the old normal. I can already attest that he was exactly right. The pre-cancer normal may be gone forever but the new normal that you will come to terms with will be just fine. God Bless and continue to heal. It will get better, just not as quickly as any of us would like. JK

scottkap

I was 37 when I was diagnosed with Nasopharongeal cancer. I got 35 rounds of rad and 5 rounds of cisplatin and 5-fu.I lost about 50 pounds. I put NOTHING down my throat for about 5 months. I could not tolerate anything, even water. It all made me sick. Eventually I could get water down then Ensure. You are WAY TOO early out to be worried about it. You will come around. Try watering down the ensure.
Ringing is normal. It will go away.
I was wasted for a long time. It will take you a good six months to a year to get back to "normal." This stuff knocks the crap out you.
I am now 3 years out and still need 2 hours a day to crash. However, I am special case so don't use me as a barometer. Be patient. You will get there.You got throughh the hard part.
Meanwhile, enjoy being 40 and thinner than all you friends!

lolojldunn

I was diagnosed with stage 4 of the right tonsil last June. The tonsil was removed and then I had six weeks of the Sysplatin and fifty-six radiation treatments. A Peg tube and port were installed prior to beginning treatments. I had the Mother of all sore throats and experienced extreme difficulty in swallowing. I was using five cans a day of a product called Isosource 1.5 via the tube. I also lost approximately fifty pounds. I finished my treatments the last part of August 2007. My tube was removed mid September. I regained my appetite and approximately twenty of the pounds I lost. I make every effort to eat sensibily. Fatigue is still an issue and I experienced about a 50% hearing loss in my right ear. I attempt to exercise every day and walk a minimum of two miles. Physically, I'm stronger today than I was prior to getting sick. I don't know that I have the stamina that I had prior to getting sick. The Docs tell me that it will be a year before everything gets back to normal. Whats normal after going through all the stuff that you went through during treatment? Hang in there Bud. You'll make it.

leema

lolojldunn said:

I was diagnosed with stage 4 of the right tonsil last June. The tonsil was removed and then I had six weeks of the Sysplatin and fifty-six radiation treatments. A Peg tube and port were installed prior to beginning treatments. I had the Mother of all sore throats and experienced extreme difficulty in swallowing. I was using five cans a day of a product called Isosource 1.5 via the tube. I also lost approximately fifty pounds. I finished my treatments the last part of August 2007. My tube was removed mid September. I regained my appetite and approximately twenty of the pounds I lost. I make every effort to eat sensibily. Fatigue is still an issue and I experienced about a 50% hearing loss in my right ear. I attempt to exercise every day and walk a minimum of two miles. Physically, I'm stronger today than I was prior to getting sick. I don't know that I have the stamina that I had prior to getting sick. The Docs tell me that it will be a year before everything gets back to normal. Whats normal after going through all the stuff that you went through during treatment? Hang in there Bud. You'll make it.

Thanks for all your insight, support and replies. This web site in general has been great and I have read and really listened to everyones's advice. I have found one guaranteed truth for all of us, recovery is a very indivdual thing.

Basically from refusal to sit still, but not being stupid to jeopardize my helath, I am progressing and will return to work part time this week.

I have tried all types of solid food but again lack of desire and taste has been the biggest detterent. Haven't found anything that really takes. I no longer use my G tube and take all my ensure and fluids by mouth. It will be removed this week. I am still losing maybe a 1lb or two a week, but not the multiple lbs like during treatment.

I am able to stand or move deliberately for maybe 3-5 hours a day and can now sit up basically all day.

I had to relinquish my role as a head baseball coach for my son's travel team prior to starting treatment, but am proud to say I was able to drive he and I, about 45minutes for an away game yesterday. Leaving around 4:30 and getting home at 9:30. I was even the bench coach in charge of positions and batting order etc.

I slept until about 10am this morning but hopped up to catch my daughters softball game @ 11. Taking it easy the rest of the day.

The ringing and hearing issues still persist. My medical oncologist did not seem to concerned, but I am following up with an ENT.

My mouth is still a concern, primarily dry mouth,thick phlegm and inability to talk comfortably, however it is better than my first post. I hope that continues to progress.

Taking nothing for granted and heeding advice from many people, I am the first to call a timeout and listen to my body. I do not want to jeopardize how far I have come or how far I still have to go.

Again Thanks for all the replies.

Leema

CroationGal

I also was very exhausted,slept lots,felt weak,very cold,off balance (watch yourself in the shower)couldn't drive for awhile.....but this part of the healing process and as time passes you will receive more energy. I was given liquid vitamins and I crushed supplements as often as I could. Try blender drinks very iced...smoothies......add splenda if that will help your taste. Drink liquids often and as much as possible. You and your body has gone thru so much and you both now need to heal but discuss this with your doctor as maybe it could be alittle depression. They can fix that! Good Luck and God Bless!

CroationGal

I also was very exhausted,slept lots,felt weak,very cold,off balance (watch yourself in the shower)couldn't drive for awhile.....but this part of the healing process and as time passes you will receive more energy. I was given liquid vitamins and I crushed supplements as often as I could. Try blender drinks very iced...smoothies......add splenda if that will help your taste. Drink liquids often and as much as possible. You and your body has gone thru so much and you both now need to heal but discuss this with your doctor as maybe it could be alittle depression. They can fix that! Good Luck and God Bless!