CancerCompass message board discussion started by Weezy on 8/7/2007 http://www.cancercompass.com/message-board/message/all,15089,0.htm Sun, 07 Sep 2008 00:00:00 GMT Sun, 07 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My husband has stage 4 tonsillar cancer with lymph node involvement and very advanced.He has had 8 rounds of chemo along with radiation.  Fortunately he did not end up needing the PEG tube, he has been able to continue eating and drinking on his own, although his weight is not at just 100 pounds he is doing well, no severe effects from the chemo, mostly constipation and mild nausea.Radiation treatments were very aggressive.  The first 2 weeks he had just one treatment a day, 5 days a week.  Then during week 3 he had one a day Mon to Weds and Thursdays and Fridays two treaments (one morning, one afternoon).  Then a week later they started him on 2 a day 5 days a week.  They are continuing that to current.  The tumor has definately gone down, you can tell that from the outside alone.  He was only able to open his mouth an inch or so and now can even bite into a sandwich.  Eating is mechanical at this point but he is doing it.  His speach is still severly affected.  He has an appointment with the Doc's this Friday, during the planning for his new radiation mask they "found" something and want to discuss it with us.  The oncologist thinks this is his last chemo treatment but that was prior to the radioncologist's discussion.Had anyone else gone through this aggressive treatment before and if so how long did it take to recover?  The oncologist said that 95% of his patients could not do this treatment that he has put him through and that none he has had go through it were off a peg.  Weezy Tue, 07 Aug 2007 00:00:00 GMT On 8/7/2007 Weezy wrote:My husband has stage 4 tonsillar cancer with lymph node involvement and very advanced.He has had 8 rounds of chemo along with radiation.  Fortunately he did not end up needing the PEG tube, he has been able to continue eating and drinking on his own, although his weight is not at just 100 pounds he is doing well, no severe effects from the chemo, mostly constipation and mild nausea.Radiation treatments were very aggressive.  The first 2 weeks he had just one treatment a day, 5 days a week.  Then during week 3 he had one a day Mon to Weds and Thursdays and Fridays two treaments (one morning, one afternoon).  Then a week later they started him on 2 a day 5 days a week.  They are continuing that to current.  The tumor has definately gone down, you can tell that from the outside alone.  He was only able to open his mouth an inch or so and now can even bite into a sandwich.  Eating is mechanical at this point but he is doing it.  His speach is still severly affected.  He has an appointment with the Doc's this Friday, during the planning for his new radiation mask they "found" something and want to discuss it with us.  The oncologist thinks this is his last chemo treatment but that was prior to the radioncologist's discussion.Had anyone else gone through this aggressive treatment before and if so how long did it take to recover?  The oncologist said that 95% of his patients could not do this treatment that he has put him through and that none he has had go through it were off a peg.  My husband and I belong to a support group through the hospital he was treated at....there are about 10 men in the group and 3 women. The majority of them have gone through the treatment you described. (well not so many chemo's) but yes to the radiation. After the radiation treatment ends is when the peg is especially needed because the radiation builds and the eating becomes more difficult. If he doesn't have a peg tube it is fine, but make sure he continues to eat.....or......drinks an ensure like product..... as well as plenty of water. How long does it take to recover? well .... he will never be the same.....so you now have to determine what normal is to him.....it will take 6 to 9 months to get to his new normal. To me this was a very hard time, because.....we use to know what he liked and didn't like to eat.....but 2 years later we are still discovering what my husband now likes. But while they are healing it is most difficult. Everything will be too dry or too thick to eat. Poached eggs were a big hit for awhile. Just keep experimenting, remember what doesn't work today may work tomorrow......(no black pepper on anything) Milk or gravy on most things helps many of the guys.....but again it is ever changing, don't get discouraged.....they can live on ensure alone for years.......hang in there.....it gets better, later Birdies Wed, 08 Aug 2007 00:00:00 GMT I had stage 4B tonsillar cancer with lymph node involvement and very advanced too . It took me 5 months to learn to eat again. My mouth always dry you learn to carry water everywhere. No spicey food you have to just learn what you can eat.  I used to weigh 197 LBS now 147 LBS.  You can't get discouraged.  I retired from the Air Force then six months later I  had caner, I used to be very active, now I just have to pace my self. we need love, encouragement and just some times someone to listen too or just cry on a shoulder it does get better every day just do not give up.  Make sure you keep active as much as you can and keep trying to swallow food or deink it will help in your recovery.  If you don't swallow you actualy for get how to I did not swallow food for 3-4 months it was hard to relarn.  Good luck and take care David45 Wed, 08 Aug 2007 00:00:00 GMT Although my husband's "primary" cancer (where it began) was not ever found, his mass was evident in the left side of neck lymphnodes.  Many tests did not confirm source but it was suspected the tonsil was the culprit.Aggressive radiation, chemo and finally dissection of the left neck area below the ear lobe, down around lower front of neck and up to almost the chin was the final treatment. They also insisted that all teeth be extracted before radiation began.It will be two years in October.  He was left with no saliva.  Although the surgeon severed some nerves during surgery which affected the use of his left arm, and some facial movements, lack of saliva is the ongoing and debilitating nightmare along with minimal taste. He has to carry and water bottle and nothing else helps.  We have tried it all. Dentures with no saliva is also hard but he manages.He has checkups every 6 months.  He is cancer free.  The radiation got rid of it but the doctors felt that they had to do surgery just to be on the safe side.The first year after treatment he could do very little strenuous work.  He can now do just about everything he did before but the arm holds him back and lack of saliva keeps him from working long stretches without drinking constantly.He weighed in at 217 lbs when the treatment started. He now hovers around 165.  He will never be heavy again but that is a plus.  Eats great and does not worry as he used to.  He takes 100 mg of Zoloft to keep his nerves in check.  All vital signs are perfect.Keep the faith and keep encouraging him.  He will get better but it will take a long time. I hope he has saliva.    Laslo Wed, 08 Aug 2007 00:00:00 GMT I was also a Stage IV tonsillar cancer with some lympnodes malignent. I took 7 weeks of chemo once a week and 7 weeks of radiation once a day. When I got done no cancer showed on the pet scan. I also refused the feeding tube and went from 240 to 180. I`m now 19 months out and weigh 216. I have little taste and almost no saliva. I am trying still to adjust to that. It has changed my personality for the worse and family and friends don`t like being around me.  Be patient with your husband and remember only another patient like him can and will ever know what he has gone thru physically and emotionally.He will survive this. I was wounded and fought like hell in Vietnam and it was nothing compared to this battle. He might as well know the 3 weeks after completeing treatment is the worst time. He has to feel he wants to kick this cancers ass and don`t let it beat him.I took treatment with 2 other stage 4`s and 1 of us 3 still had cancer after treatment. It was smaller and they removed his nodes. Many have surgery after. Some doctors do it to make sure. Some don`t.I went to a great team of doctors at the University of Michigan.Please email me with questions. You will have many. I hope he is taking Ensure daily. Get strawberry only. I have spent thousands trying to figure out what I can eat and drink to survive the last 19 months so ask me questions.Tell him good luck and pray everynight. Then get up and burn that cancer`s ass. Ron in Michigan Cavman Wed, 08 Aug 2007 00:00:00 GMT CavemanI am basically new to this board, as my mom has lung cancer iwth brain mets dx 2 months ago.  She has undergone radiation  (whole brain) and takes Tarceva.  I was reading as I do every night and saw your post.  I wanted to say thanks toyou for fighting in Vietnam and risking your life.  I remember in grammer school, having a silver braclet for a prisoner of war.  I sort of had an idea what was going on, but as I sit here thinking about all the people on this board with a loved one that is sick or all of you guys that are cancer survivors/fighters I realize that fight is a war too.  I hope that dosen;'t sound corny, but it is nice to be able to tell someone thanks.Brenda Brenda57 Wed, 08 Aug 2007 00:00:00 GMT My husband had the same treatment and was stage 4 tonsil cancer.  He had 3 rounds of chemo and 7 weeks of daily rad's.  It has been 9 weeks since his last treatment.  He did have a peg and thank god.  He was very sick and could not eat by mouth for a long time. Every side effect seemed to find him.  He is getting better and starting to eat.  He is 49 years old, we have a four year old and a seven year old.  This treatment was ruff but with the family situation we could not think of any other option.  He had a pet scan last week and it appears to have come back clean.  I feel like I can finally breath after five months.  It is hard and when people keep telling you to keep the faith they may not understand just how hard that is.  We got great news,  all of the treatment and pain appears to have been worth it.   I hope the same for you.  There is a light at the end of the tunnel.   Good luck. Angela b Thu, 09 Aug 2007 00:00:00 GMT Today will be his 9th and final chemo treatment.  Three more days (6 more treatments) of radiation (for a total of 60+).The Oncologist said that he is very impressed with his acceptance of the treatments and the fact that he is not only able to take in fluids but almost any food by mouth.  (He tried to eat ribs..  was a mistake!).Before looking into his mouth he stated that he hoped he was cured... once he looked in and hesitated I asked him to shine the light back into his mouth and let me look.  You can see where the tumor still is and where one is now on the other side, along with some extremely enlarged lymph nodes on both sides of his neck.  The tumor was located on the left only, now you can see a large growth on the right.  We just pray that the core of the tumor has been eradicatedThe PET is now scheduled for mid-Oct, giving his system 6-8 weeks to flush out the chemo and radiation.  My worry is that the tumor, although definately smaller, is still there and now without the radiation and chemo to prevent growth that it will indeed grow as this is such an aggressive cancer.  He will have the chemo port flushed in 4 weeks but there is no plan to remove that yet. Joined another prayer group, can't get on enough!  Just gonna have to wait out the next 2 months to make sure no symptoms arise, L. Weezy Fri, 10 Aug 2007 00:00:00 GMT  On 8/8/2007 Cavman wrote:I was also a Stage IV tonsillar cancer with some lympnodes malignent. I took 7 weeks of chemo once a week and 7 weeks of radiation once a day. When I got done no cancer showed on the pet scan. I also refused the feeding tube and went from 240 to 180. I`m now 19 months out and weigh 216. I have little taste and almost no saliva. I am trying still to adjust to that. It has changed my personality for the worse and family and friends don`t like being around me.  Be patient with your husband and remember only another patient like him can and will ever know what he has gone thru physically and emotionally.He will survive this. I was wounded and fought like hell in Vietnam and it was nothing compared to this battle. He might as well know the 3 weeks after completeing treatment is the worst time. He has to feel he wants to kick this cancers ass and don`t let it beat him.I took treatment with 2 other stage 4`s and 1 of us 3 still had cancer after treatment. It was smaller and they removed his nodes. Many have surgery after. Some doctors do it to make sure. Some don`t.I went to a great team of doctors at the University of Michigan.Please email me with questions. You will have many. I hope he is taking Ensure daily. Get strawberry only. I have spent thousands trying to figure out what I can eat and drink to survive the last 19 months so ask me questions.Tell him good luck and pray everynight. Then get up and burn that cancer`s ass. Ron in MichiganRon...Wondering how you are doing.  Hubby is out of treatment and just in the 'Hanging around' stage - post treatment and pre-testing.  So far he has done incredible with eating and drinking.  The effects of the radiation are not wearing off yet but it has just been two weeks since treatment ended.He ended up having 9 cisplatin chemo rounds and 90 radiation treatments (two a day for 9 1/2 weeks) and had retained the ability to eat and drink throughout.  He actually out-eats ME every day.  There are very few things he cannot eat.  I am in shock but his Doc's are VERY amazed at his progress.  As for his stamina.. he is trying to work as long a day as possible but is still extremely fatigued.  Constipation has been a severe problem for him as well.  The chemo port protrudes from his chest quite a bit and irritates him but there is no way that thing is coming out now.  His skin is healing where the radiation turned him into a REAL redneck (he always was one, just now has the proof!) and he is planning things for the future.  He is in the process of redoing the swimming pool (hiring people to work it) and is in good spirits.How about you?  Are things becoming easier for you?  When will you have another Doc appointment?  Weezy Tue, 28 Aug 2007 00:00:00 GMT