Starting radiation and chemo

Hi there, 

I am also new to this message board.  My husband who is 56 years old was diagnosed wtih stage II rt. tonsil cancer back in August 09.  He had the rt. tonsil removed and rt. neck dissection done on August 10th.  He did wonderful from the surgery.  He was in pain but he made it through like a champ.  He just had his second radiation treatment today.  He had his first chemo treatment of 220mg of Cisplatin in 1,000 cc's of fluid.  So far so good.  No nausea at all.  We saw the radiation doc today and he is sooooo wonderful.  He said if the nausea gets here and gets bad he will get him Merinol.  I'm not sure of that spelling but it's the marijuana pill.  It will increase his appetite, help pain if there is any and help the nausea.  Our team of doctors treating him are A one.  I feel that, that really helps in the patient's treatment and getting well.  I am an ER nurse and I am here for anything my husband needs.  We will get through this together.  I know he will have some rough days but his attitude is just unreal.  So positive in every way.  Reading some of these messages has been so helpful aready.  We have a ten year old son and two dogs.  I plan on taking him to almost every treatment that I can.  I work nights.  He does have a peg tube also.  I am glad he got it and when and if the time comes that we will need it, it will be there.  We are just taking one day at a time and trusting this whole thing to God.  His pet scan after the surgery a few weeks later was negative.  My husband was also a non smoker and occasionally drinks beer.  He found it one day at the dinner table by touching the right side of his neck.  He said he felt a lump.  He went to his doc right away and was put on two different kinds of antibiotics.  As a nurse I just knew it was going to turn out to be cancer.  I see so much cancer being a nurse.  My husband just retired in Feb. so at least he doesn't have to worry about getting back to a job.  He can take his time and heal.  I pray that everyone on this message board will be healed.  You truly have to have faith.  It's so nice to be able to talk to other people with the same exact thing that we are going through.  Good luck to everyone on this message board that is going through this.  It's not fun.

Hi

 Your husband is where I was two  years ago - at the very beginning of treatment for cancer of the left tonsil.  You have an excellent outlook which will come in handy in the days ahead because as you say, there will be rough times.  Turning to God for comfort and guidance will help immensely.  Cisplatin is one of the highest nausea causing chemo drugs used so the nausea will come but you are prepared for that.  I used Emend which was a miracle drug.  When something arises, you are in the best place possible because many of us have already made the journey your husband has embarked on - and we made it through.  The beautiful aspect of this type of cancer is - it is not just treatable as many are - but totally cureable! 

I will remember your husband in my prayers as I do all cancer patients.  Two years ago, I was undergoing chemo and radiation. I was in St. Lucia West Indies where close friends are missionaries for a soccer camp/mission trip.  I am currently in St. Lucia where I will speak to the women on a couples retreat this weekend.  I return on in March on a medical mission.  My conversations with God when I was diagnosed with cancer included prayers that He got me through the treatment so that I could do more for Him.  He answered my prayers and I am trying to keep my part.  I found a plaque last year in a thrift store - "Tell my children I love them.  God".  God loves your husband and you - as well as all of His children.  We may face trials but He is there with us to guide us through them.  

Diana

 

On 9/29/2009 neats59 wrote:

Hi there, 

I am also new to this message board.  My husband who is 56 years old was diagnosed wtih stage II rt. tonsil cancer back in August 09.  He had the rt. tonsil removed and rt. neck dissection done on August 10th.  He did wonderful from the surgery.  He was in pain but he made it through like a champ.  He just had his second radiation treatment today.  He had his first chemo treatment of 220mg of Cisplatin in 1,000 cc's of fluid.  So far so good.  No nausea at all.  We saw the radiation doc today and he is sooooo wonderful.  He said if the nausea gets here and gets bad he will get him Merinol.  I'm not sure of that spelling but it's the marijuana pill.  It will increase his appetite, help pain if there is any and help the nausea.  Our team of doctors treating him are A one.  I feel that, that really helps in the patient's treatment and getting well.  I am an ER nurse and I am here for anything my husband needs.  We will get through this together.  I know he will have some rough days but his attitude is just unreal.  So positive in every way.  Reading some of these messages has been so helpful aready.  We have a ten year old son and two dogs.  I plan on taking him to almost every treatment that I can.  I work nights.  He does have a peg tube also.  I am glad he got it and when and if the time comes that we will need it, it will be there.  We are just taking one day at a time and trusting this whole thing to God.  His pet scan after the surgery a few weeks later was negative.  My husband was also a non smoker and occasionally drinks beer.  He found it one day at the dinner table by touching the right side of his neck.  He said he felt a lump.  He went to his doc right away and was put on two different kinds of antibiotics.  As a nurse I just knew it was going to turn out to be cancer.  I see so much cancer being a nurse.  My husband just retired in Feb. so at least he doesn't have to worry about getting back to a job.  He can take his time and heal.  I pray that everyone on this message board will be healed.  You truly have to have faith.  It's so nice to be able to talk to other people with the same exact thing that we are going through.  Good luck to everyone on this message board that is going through this.  It's not fun.

 

First off, I want to say that I am sorry about your husbands diagnosis.  He is very lucky to have your support and great doctors!!  I had tongue cancer almost 2 years ago at 42.  Luckily, I couldn't take cisplatin (very tough drug) but it still was a very hard treadment.  Of course I believe that God healed me.  He was with me and can be there for your husband.  Please remind him to pray alot, that will certainly give him comfort to know that God is right by his side and will never give him more than he can handle.  Even my doctors said that a posititive attitude and mind is the key to getting better.  I will pray for your husband, you and his doctors.  Sincerely, Sam

 

On 9/29/2009 neats59 wrote:

Hi there, 

I am also new to this message board.  My husband who is 56 years old was diagnosed wtih stage II rt. tonsil cancer back in August 09.  He had the rt. tonsil removed and rt. neck dissection done on August 10th.  He did wonderful from the surgery.  He was in pain but he made it through like a champ.  He just had his second radiation treatment today.  He had his first chemo treatment of 220mg of Cisplatin in 1,000 cc's of fluid.  So far so good.  No nausea at all.  We saw the radiation doc today and he is sooooo wonderful.  He said if the nausea gets here and gets bad he will get him Merinol.  I'm not sure of that spelling but it's the marijuana pill.  It will increase his appetite, help pain if there is any and help the nausea.  Our team of doctors treating him are A one.  I feel that, that really helps in the patient's treatment and getting well.  I am an ER nurse and I am here for anything my husband needs.  We will get through this together.  I know he will have some rough days but his attitude is just unreal.  So positive in every way.  Reading some of these messages has been so helpful aready.  We have a ten year old son and two dogs.  I plan on taking him to almost every treatment that I can.  I work nights.  He does have a peg tube also.  I am glad he got it and when and if the time comes that we will need it, it will be there.  We are just taking one day at a time and trusting this whole thing to God.  His pet scan after the surgery a few weeks later was negative.  My husband was also a non smoker and occasionally drinks beer.  He found it one day at the dinner table by touching the right side of his neck.  He said he felt a lump.  He went to his doc right away and was put on two different kinds of antibiotics.  As a nurse I just knew it was going to turn out to be cancer.  I see so much cancer being a nurse.  My husband just retired in Feb. so at least he doesn't have to worry about getting back to a job.  He can take his time and heal.  I pray that everyone on this message board will be healed.  You truly have to have faith.  It's so nice to be able to talk to other people with the same exact thing that we are going through.  Good luck to everyone on this message board that is going through this.  It's not fun.

Welcome to the club, so to speak.

I suggest that you head over to the Cancer Compass "Head and Neck Cancer" forum, which is where folks like us hang out. There are a lot of good people there, patients, survivors and caregivers who have gone through this, are in the middle of it or are just starting their journeys. The only way I came across your message was that it was selected as the Cancer Compass Weekly Newsletter's "Message of the Week." Not bad for a newbie!

--Jim in Delaware

(One year out of treatment for Stage III SCC right tonsil, 40 rads, 6 cisplatin)

 

I recently completed treatment for Left Tonsil cancer. I'm 55 years old and think i've been cured (we'll see). Get your husbands biopsies tested for oncogenic HPV. My first such test came back negative, which we thought was surprising. So we followed this with a different kind of test which came back positive and so was highly indicative that the first test gave a false negative. Then we sent my biopsy to John's Hopkins Hospital which did a specialized test that confirmed I was infected with HPV-16, the most common oncogenic form of this virus. THIS WAS GREAT NEWS. Tonsillar cancer basically has 1 of 2 causes: (a) tobacco & alcohol, or (b) oncogenic HPV. The prognosis for those cases caused by HPV is substantially better than for those cases caused by tobacco & alcohol. My treatment regimen was far different than that your husband is getting. I did a lot of research on this and do not feel that your husband is getting the best treatment regimen. However, since he is so far into his treatment, I'm not sure it makes sense to "switch horses" at this point in time. Still, I suggest you promptly get a second opinion at one of the top institutions such as (1) MD Anderson in Houston, (2) John's Hopkins in Baltimore, (3) Mass General Hospital in Boston, (4) Dana Farber Cancer Institute in Boston. My regimen was as follows: (a) pan-endoscopy, including a bi-lateral tonsillectomy, to ascertain that the left tonsil was the primary source, (b) 9 weeks of "induction chemotherapy" [IC] consisting of 3 'rounds'... each round used three chemicals [TPF] and took 3 week to complete, (c) 7 weeks of "chemo-radiationtherapy" [CRT]... this involved daily radiation via IMRT and weekly chemo using two chemicals to radio-sensitize the cancerous tissues. Recent studies have demonstrated substantially better outcomes (survival) with this treatment regimen. Good luck.

Thanks for writing back.  My husband has an awesome attitude towards this and so do I.  So far he is day four from his first chemo and is still not nauseated.  Thank God.  We ate pizza last night.  He is still keeping up on eating well.  So one day at a time.  We have 100% faith in God and always will.  I'ts in his hands because it is what it is already.   We love his doctors they are so awesome.  Please keep us in your prayers. Nita

I just wanted to let you know as well as all the readers that although the journey may be arduous at times, one must stay positive and take each thing as it comes.  My husband had tonsilar cancer, stage II, last year and started his chemo and radiotherapy ini June (he was diagnosed early April) - he landed in the hospital because of low white blood count and stayed in isolation for 2 weeks - when released he had to get a feeding tube which came out in early October 08.  I cried for joy when in December he was able to eat "real" food rather than pureed.

My husband is 63 yrs old, never smoked, occasional wine or beer and very fit: running, tennis, biking, gym 3x/week - I can only tell you that it was a TOTAL shock (did u see that ad on tv - when the doc is announcing to the patient that he has cancer, then the patient to her husband, then to their children? It looks like they got sucker punched - that,s how we felt.

However, he feels GREAT today!!! thanks to a wonderful medical team and his own very positive outlook. He can eat anything and in August he started back at work (he,s an industrial designer) for 4 half days and this week he's increasing it to 5 half days. He walks for one hour per day and has slowly started to work out at home so his energy is getting better.  Any drawbacks? just a couple: first, his thyroid is shot from the radiotherapy so he has to take the drug synthroid which seems to be working ok (PLS watch out for this - the thryroid problem was diagnosed by his gp in March 09 - it may take awhile to act up). The other thing is that because of a lack of saliva, my husband has really bad reflux (very painful) with almost everything he ate - this started about April 09 - so he has to take medication which allows him to eat anything. 

The main thing as caregiver is to take care of yourself - I took accompanied my husband on all his treatments and worked full time etc. I think that talking about it when you feel down to some sympathetic friend is essential and to have faith and pray.  And remember that IT WILL GET BETTER, it just takes time.  Like one doctor told us (& he's 100% right): look at month by month improvements, not daily or weekly.

Bless you and all my best to both of you!

stella

 

 

 

 

    Aloha Caregiver, I was diagnosed with tonsil cancer at the beginning of january 2009 and under went the surgery and radiation treatments but no chemo. I had to have my teeth removed because the hospital dentist said the radiation treatments would cause terrible aftereffects, I guess your husband did not have his teeth removed. After talking with the dentist making me dentures I found out that I reall ydidn't need my teeth removed and am quite upset about this. One thing I would sugesst is for your husband to get drinkable Aloe Vera juice ( The kind that is pure and just strained). Most people who have radiation in the tonsil area lose their salivary glands and taste buds. The taste buds will most likely return but there may be some difference in taste, but most of the time the salivary glands don't work again and dry mouth occurs. Using the drinkable Aloe Vera helps prevent both of these downsides of radiation treatment. I would use it 4-5 times a day and just before and after radiation treatment and my salivary glands still work, not 100% but the doctors say that there is an excellant chance they will return to 100% but they work good enough even now. I didn't lose my taste buds either, These reults blew the doctors away and also the radiation techs. Now the doctors and the techs are telling patients who have radiation treatment in the moth and throat areas to use the Aloe Vera during and after treatment. The radiation will most likely not affect your husband till just before he is done and for a few months after so he needs to take it easy and not over do it. I tried to go back to work 2 months after finishing radiation and I crashed big time and was very weak and fatigues for over a month. I just wish the hospital dentist would have explained the downside of radiation effects to my teeth and jaw like my dentist did , I would not have let them take my teeth out and since you say your husband ate pizza he must still have his teeth. Did they approach your husband about removing them when he was in the hospital for surgery? Aloha.Wildog

I am one year post chemo radiation for base of tongue cancer.  If your husband is a non smoker, his cancer was probably caused by the HPV virus.  That's good as the survival rate is much higher. 86% vs. 50% at five years for Stage 3 which is what your husband and I were when diagnosed.

My best advice is that he start swallowing therapy now and do it during treatment and after it ends.  He must keep his swallowing muscles strong or he will be on that feeding tube for life.  Also, he should use his teeth trays with fluoride every night.  If he doesn't he will have to have 30 two hour sessions in the hyperbaric oxygen chamber if he needs a tooth pulled to avoid getting necrosis of the jaw.  Reduced saliva means he doesn't have the protective enzymes; so he needs to add the fluoride.

He will get through it.  And you being so supportive and loving is a big plus!  Good luck.

 

On 9/29/2009 neats59 wrote:

Hi there, 

I am also new to this message board.  My husband who is 56 years old was diagnosed wtih stage II rt. tonsil cancer back in August 09.  He had the rt. tonsil removed and rt. neck dissection done on August 10th.  He did wonderful from the surgery.  He was in pain but he made it through like a champ.  He just had his second radiation treatment today.  He had his first chemo treatment of 220mg of Cisplatin in 1,000 cc's of fluid.  So far so good.  No nausea at all.  We saw the radiation doc today and he is sooooo wonderful.  He said if the nausea gets here and gets bad he will get him Merinol.  I'm not sure of that spelling but it's the marijuana pill.  It will increase his appetite, help pain if there is any and help the nausea.  Our team of doctors treating him are A one.  I feel that, that really helps in the patient's treatment and getting well.  I am an ER nurse and I am here for anything my husband needs.  We will get through this together.  I know he will have some rough days but his attitude is just unreal.  So positive in every way.  Reading some of these messages has been so helpful aready.  We have a ten year old son and two dogs.  I plan on taking him to almost every treatment that I can.  I work nights.  He does have a peg tube also.  I am glad he got it and when and if the time comes that we will need it, it will be there.  We are just taking one day at a time and trusting this whole thing to God.  His pet scan after the surgery a few weeks later was negative.  My husband was also a non smoker and occasionally drinks beer.  He found it one day at the dinner table by touching the right side of his neck.  He said he felt a lump.  He went to his doc right away and was put on two different kinds of antibiotics.  As a nurse I just knew it was going to turn out to be cancer.  I see so much cancer being a nurse.  My husband just retired in Feb. so at least he doesn't have to worry about getting back to a job.  He can take his time and heal.  I pray that everyone on this message board will be healed.  You truly have to have faith.  It's so nice to be able to talk to other people with the same exact thing that we are going through.  Good luck to everyone on this message board that is going through this.  It's not fun.

 

I shall keep you and your husband in my prayers.  I pray that the outcome will be a good one.  My husband was much older and lost his battle three years ago.  I spent a great deal of time on this website and found good information and comfort.  My husband also had a feeding tube.  I had my husband doing jaw exercises every day during his radiation treatment.  I found them on the dental website.  As a result my husband was able to open his mouth very wide.  However, I was not able to watch over him all the time to make sure he took lots of sips of water.  As a result, he developed severe dysphagia (I think that is how you spell it) and was never able to swallow.  My husband's course of treatment for his cancerous tumor on his left tonsil was radiation and then neck disection.  When I asked the doctor why they just couldn't remove his tonsil, he looked at me like I was crazy.  My husband also did not have chemo.  If he had been given chemo initially, he might have had a better chance of survival.  So, encourage your husband to do jaw exercises and swallow water as often as possible.  I wish you both the very best.  Neelieann