My husband has been diagnosed with 4A Throat cancer.
Comments
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Tom and Jerry
Welcome to the forum...
My experience started with STG III SCC Tonsil Cancer, and a lymphnode HPV+.
This was January 2009, tonsils were removed and port installed. Nine weeks of chemo in three cycles (Cisplatin, Taxotere and 5FU). This followed by seven weeks of weekly chemo (Carboplatin) and daily rads with Amifostine injections given each day just before the rads.
No PEG, but some swear by it..a lot depends on weight and health going in...
Probably the worst for me was around week four or the rads and the next few weeks post rads (seven weeks total). During that time I mainly survived on Ensure Plus and water... I had a routine, grind a percocet in a 1/4 glass of water, set aside. A swig of liquid exaction, glass of water, one or two cans of Ensure Plus, a few Delmont sliced peaches (to keep the throat muscles working), another glass of water, and then the percocet in water...all followed by a nice warm shower...not sure, but it helped relive the pain.
Treatment ended in June 2009, all follow-ups have been clean. I saw my NET, and Chemo MD every three months the first year and the rads MD every six months.
It took until March 2010 for all blood work to come back into normal levels...everything, still no meds, I'm 57.
I lost all taste and saliva for about 3 - 6 months, but now after nearly two years post treatment, I have regained nearly 90 - 95% of both back.
Cisplatin can have a lot of side effectts, it's something that should be monitored and communicate anything going on with your MD's.
There a lot of good people here and tons of experience and personal knowledge, glad you found your way here.
Best,
John0 -
Sounds like my husbandarndog64 said:Squalamous Cell Carcinoma at
Squalamous Cell Carcinoma at the base of his tongue and next to his left jaw bone with multiple lymphnode invasion as well.
Except Jim had only one lymph node involved. Jim's was hypopharyngeal and BOT.
Agree with getting the PEG although Jim did not have to use his - it was a real safety net I was happy to see him get. Also, Jim's teeth were extracted as a preventive measure and that was a good move for him - getting fitted for dentures now. During treatment is a good time to throw dietary restrictions regarding weight gain out the window: if your husband doesn't lose it during treatment, he may very well do so afterward.
Following doctor's orders regarding pre-treatment medications saved Jim a lot of grief regarding nausea and negative reactions to treatments. We saw a lot of people suffer because they didn't take the anti-nausea medication.
Visit this site often - there are MANY knowledgeable people who post here.0 -
Allot of questions ?
Arndog64,
You probably have more questions then what has been answered by your Doctors. I'm sure they have given you a good bit of information, but you are at the right site for answers. There are allot of knowledgeable people here that have walked the path that your husband is about to take.
He starts on Monday, so you only have a few days to try and get a little head start on some of the things that may help him and you get through all this. One thing that I will suggest to you as the Caregiver is to make sure you take care of yourself as well. He will lean on you and you have to be healthy as well as strong.
As he goes through the radiation and Chemo, he will develope sores in his mouth. A solution I used was the Baking Soda and Salt solution, I used it as often as I needed to take the edge off of the discomfort in my mouth and throat. Some people here have used a perscription from the Doctors called " Magic Mouthwash ", it too is suppose to take the edge off of the mouth discomfort.
His neck will slowly start to turn red and dry out from the Radiation. I was told to use a lotion and they suggested " Keri Lotion " it worked well for me. Just make sure he uses it often so he doesn't blister. They will stop the treatments if he does.
Again, ask as many questions as you need to and also visit the Head and Neck Super thread that SweetBlood22 put together ( http://csn.cancer.org/node/214222 ) it is just below on this page but may move as people post new threads. It has a collection of helpful hints and information.
My Best to Both of You and Everyone Here0 -
HowdyMarineE5 said:Allot of questions ?
Arndog64,
You probably have more questions then what has been answered by your Doctors. I'm sure they have given you a good bit of information, but you are at the right site for answers. There are allot of knowledgeable people here that have walked the path that your husband is about to take.
He starts on Monday, so you only have a few days to try and get a little head start on some of the things that may help him and you get through all this. One thing that I will suggest to you as the Caregiver is to make sure you take care of yourself as well. He will lean on you and you have to be healthy as well as strong.
As he goes through the radiation and Chemo, he will develope sores in his mouth. A solution I used was the Baking Soda and Salt solution, I used it as often as I needed to take the edge off of the discomfort in my mouth and throat. Some people here have used a perscription from the Doctors called " Magic Mouthwash ", it too is suppose to take the edge off of the mouth discomfort.
His neck will slowly start to turn red and dry out from the Radiation. I was told to use a lotion and they suggested " Keri Lotion " it worked well for me. Just make sure he uses it often so he doesn't blister. They will stop the treatments if he does.
Again, ask as many questions as you need to and also visit the Head and Neck Super thread that SweetBlood22 put together ( http://csn.cancer.org/node/214222 ) it is just below on this page but may move as people post new threads. It has a collection of helpful hints and information.
My Best to Both of You and Everyone Here
Just want to say that this site will give you as many answers as your doctors going forward.
The dr's know how to kill the cancer and they go about it very methodically. In the meantime, the patient gets burned, inside and out, has no energy, some pain, and a lot of other issues. But as you can tell, the dr's do their jobs by all the survivors on this site.
I thought I was tough, 6'2" and 210 lbs, but I needed the PEG tube and was glad to have it. I lost about 25 lbs, but it would have been 50 without the PEG. So I vote to get the PEG before starting. It's an easy insert, outpatient.
In addition, you'll need tough nerves and strength to get through this, both of you. My wife was a godsend for me and I'm sure you'll be for your husband. I'm 1 year post treatment as of today and doing quite well. There are always some issues, but all in all, I can't complain.
Keep posting, it will help you alot.....
all the best and be strong,
Steve0 -
HowdyMarineE5 said:Allot of questions ?
Arndog64,
You probably have more questions then what has been answered by your Doctors. I'm sure they have given you a good bit of information, but you are at the right site for answers. There are allot of knowledgeable people here that have walked the path that your husband is about to take.
He starts on Monday, so you only have a few days to try and get a little head start on some of the things that may help him and you get through all this. One thing that I will suggest to you as the Caregiver is to make sure you take care of yourself as well. He will lean on you and you have to be healthy as well as strong.
As he goes through the radiation and Chemo, he will develope sores in his mouth. A solution I used was the Baking Soda and Salt solution, I used it as often as I needed to take the edge off of the discomfort in my mouth and throat. Some people here have used a perscription from the Doctors called " Magic Mouthwash ", it too is suppose to take the edge off of the mouth discomfort.
His neck will slowly start to turn red and dry out from the Radiation. I was told to use a lotion and they suggested " Keri Lotion " it worked well for me. Just make sure he uses it often so he doesn't blister. They will stop the treatments if he does.
Again, ask as many questions as you need to and also visit the Head and Neck Super thread that SweetBlood22 put together ( http://csn.cancer.org/node/214222 ) it is just below on this page but may move as people post new threads. It has a collection of helpful hints and information.
My Best to Both of You and Everyone Here
Just want to say that this site will give you as many answers as your doctors going forward.
The dr's know how to kill the cancer and they go about it very methodically. In the meantime, the patient gets burned, inside and out, has no energy, some pain, and a lot of other issues. But as you can tell, the dr's do their jobs by all the survivors on this site.
I thought I was tough, 6'2" and 210 lbs, but I needed the PEG tube and was glad to have it. I lost about 25 lbs, but it would have been 50 without the PEG. So I vote to get the PEG before starting. It's an easy insert, outpatient.
In addition, you'll need tough nerves and strength to get through this, both of you. My wife was a godsend for me and I'm sure you'll be for your husband. I'm 1 year post treatment as of today and doing quite well. There are always some issues, but all in all, I can't complain.
Keep posting, it will help you alot.....
all the best and be strong,
Steve0 -
Hello
I also recommend scanning this site often - read old posts, start new questions whenever you have one - some folks benefit from visiting the chat room and news items as well.
I was diagnosed Stage four scc base of tongue cancer with two lymph nodes involved in October of 2009. I finished chemo radiation last March, got my PEG feeding tube removed last summer, and had a modified radical neck dissection three months ago.
Drink tons of water (both of you - it does a body good), and get in good calories where you can. Get in a laugh whenever you can, and do some exercise (even if it's just strolling). Take care of yourself; it'll help you be able to help him. Keep his docs up to date on everything that's going on with him, and don't hesitate to contact them with questions (they work for you). Be there to help your hubby, but don't do everything for him unless it becomes necessary (I took care of myself through treatment - I'm not the only one - you never know, some folks become totally reliant on their caregivers, some folks do not at all.
Any aid you can (and need to) use is a good thing. Some folks may think that people who use pain medications or anti-anxiety drugs are showing weakness - NOT the folks here. Pain and anxiety aren't normal - we shouldn't have to deal with them, and they can make the treatment process much more difficult. The pain medications I took did not take my pain away completely, but did help. By taking anti-nausea meds faithfully, I was able to avoid nausea most of the time. Whenever your hubby is experiencing difficulties, let the docs know - we have wonderful meds to combat side effects now. Do well0 -
welcome
As a caregiver (husband had stage 4b laryngeal) make sure you take care of YOU. It's going to be a rough road for you and him both, and he will lean on you a lot.
Take lots of notes, ask lots of questions, get a large 3 ring binder together and keep all his paperwork in the same place. Also keep his financial medical (insurance stuff) together in a binder. I did this and it's helped me a lot as I became the unwilling CEO of this icky company. Even if you think it's not important papers, keep it. Never know when it will come in handy.
Every one on this board will help out with anything you may need, just ask.
Also, get a support network together: see if a nutritionist, social worker, therapist are available, as well as family and friends. Don't be afraid to ask for what you need, and accept help whenever it's offered.
And for you, set aside time each day and a big block of time each week JUST FOR YOU. It seems frivolous, but as time goes on you will need to recharge your batteries. Stop by the caregiver board and let it all out.
Faith, Peace, Love, and Hugs,
April0 -
Thank you everyone for yourmswijiknyc said:welcome
As a caregiver (husband had stage 4b laryngeal) make sure you take care of YOU. It's going to be a rough road for you and him both, and he will lean on you a lot.
Take lots of notes, ask lots of questions, get a large 3 ring binder together and keep all his paperwork in the same place. Also keep his financial medical (insurance stuff) together in a binder. I did this and it's helped me a lot as I became the unwilling CEO of this icky company. Even if you think it's not important papers, keep it. Never know when it will come in handy.
Every one on this board will help out with anything you may need, just ask.
Also, get a support network together: see if a nutritionist, social worker, therapist are available, as well as family and friends. Don't be afraid to ask for what you need, and accept help whenever it's offered.
And for you, set aside time each day and a big block of time each week JUST FOR YOU. It seems frivolous, but as time goes on you will need to recharge your batteries. Stop by the caregiver board and let it all out.
Faith, Peace, Love, and Hugs,
April
Thank you everyone for your input. I will post updates and ask questions daily. We are going out to dinner Saturday night. Looking forward to getting out.. I guess after Monday we will be home bound for several weeks. During chemo they say, stay away from large groups of people. But, he will need to get out, should he wear a surgical mask when in public?0 -
Welcome to the dubious "club"arndog64 said:Thank you everyone for your
Thank you everyone for your input. I will post updates and ask questions daily. We are going out to dinner Saturday night. Looking forward to getting out.. I guess after Monday we will be home bound for several weeks. During chemo they say, stay away from large groups of people. But, he will need to get out, should he wear a surgical mask when in public?
We were once where you are now. In August of 2010, Buzz was diagnosed with Stage IV base of tongue cancer with 1 lymph node involved. I can give you some information based on our experience. While getting chemo, take the antinausea meds preventatively. Do not wait until you have the nausea. The PEG (feeding tube) is a life saver. Buzz actually lost very little weight and we used the feeding tube from the beginning, even before radiation. Call your doctor if you have any concerns. During radiation, you will need pain medicine. Ask for it! I did not call the first weekend after chemo and I should have. Buzz had to go to the hospital that Monday. No mask is necessary unless your are neutropenic (have low white blood cell count). You should avoid crowds and sick people even if not truly neutropenic. No need to be homebound but you probably won't feel like going out while feeling the effects of the chemo. Any help you need is freely given on this site. Having received so much support myself (as wife and caregiver), I now am able to give support to others like you. BTW, Buzz just had his first PET scan post treatment and the tumor is gone! You will get there too. Karen0 -
SCC STAGE 4arndog64 said:Squalamous Cell Carcinoma at
Squalamous Cell Carcinoma at the base of his tongue and next to his left jaw bone with multiple lymphnode invasion as well.
Sorry to see you here but welcome. I too had SCC Stage 4B with mets to the nodes on the right side of my neck.
I am a proponent of hitting it with all they can offer to you, and definitely have the PEG inserted, even if you do not use it. If you need it, you will thank your lucky stars you have it.
I will be honest, you may be instore for some very hard times regarding how you react to your treatment.
You will come through the other side as we all have.
Stay strong and stay posting. This group of fine folks were instrumental in my recovery.
Best!!
Mike0 -
THANK YOU FOR STILL POSTING APRILmswijiknyc said:welcome
As a caregiver (husband had stage 4b laryngeal) make sure you take care of YOU. It's going to be a rough road for you and him both, and he will lean on you a lot.
Take lots of notes, ask lots of questions, get a large 3 ring binder together and keep all his paperwork in the same place. Also keep his financial medical (insurance stuff) together in a binder. I did this and it's helped me a lot as I became the unwilling CEO of this icky company. Even if you think it's not important papers, keep it. Never know when it will come in handy.
Every one on this board will help out with anything you may need, just ask.
Also, get a support network together: see if a nutritionist, social worker, therapist are available, as well as family and friends. Don't be afraid to ask for what you need, and accept help whenever it's offered.
And for you, set aside time each day and a big block of time each week JUST FOR YOU. It seems frivolous, but as time goes on you will need to recharge your batteries. Stop by the caregiver board and let it all out.
Faith, Peace, Love, and Hugs,
April
April, I continue to be "recharged" when you post. You are one of the strongest and well spoken induviduals I have had the pleasure to communicate with.
I hope you are well
BEST!!
Mike0 -
1 year!hawk711 said:Howdy
Just want to say that this site will give you as many answers as your doctors going forward.
The dr's know how to kill the cancer and they go about it very methodically. In the meantime, the patient gets burned, inside and out, has no energy, some pain, and a lot of other issues. But as you can tell, the dr's do their jobs by all the survivors on this site.
I thought I was tough, 6'2" and 210 lbs, but I needed the PEG tube and was glad to have it. I lost about 25 lbs, but it would have been 50 without the PEG. So I vote to get the PEG before starting. It's an easy insert, outpatient.
In addition, you'll need tough nerves and strength to get through this, both of you. My wife was a godsend for me and I'm sure you'll be for your husband. I'm 1 year post treatment as of today and doing quite well. There are always some issues, but all in all, I can't complain.
Keep posting, it will help you alot.....
all the best and be strong,
Steve
Congratulations Steve. That's an awesome milestone.
Bob0 -
Prayers for youarndog64 said:Thank you everyone for your
Thank you everyone for your input. I will post updates and ask questions daily. We are going out to dinner Saturday night. Looking forward to getting out.. I guess after Monday we will be home bound for several weeks. During chemo they say, stay away from large groups of people. But, he will need to get out, should he wear a surgical mask when in public?
I'll add you both to my prayer list. The surgical masks keep the person wearing it from infecting others but don't do much to stop germs coming in. Lots of hand washing helps and take care around kids and large groups like movie theaters and busy restaurants and such. My girlfriend helped take care of me when I was low in treatment and she wouldn't let me open any doors or touch elevator buttons or really touch anything. If I did she was right there with hand sanitizer spraying me down. You guys will get through this. Stay strong and keep the calories rolling in almost constantly.
Bob0 -
thinkin outside the boxluv4lacrosse said:THANK YOU FOR STILL POSTING APRIL
April, I continue to be "recharged" when you post. You are one of the strongest and well spoken induviduals I have had the pleasure to communicate with.
I hope you are well
BEST!!
Mike
thank you for not havin kicked me out! LOL Helping out where I can helps me. Goofy but true 0 -
Public Contactarndog64 said:Thank you everyone for your
Thank you everyone for your input. I will post updates and ask questions daily. We are going out to dinner Saturday night. Looking forward to getting out.. I guess after Monday we will be home bound for several weeks. During chemo they say, stay away from large groups of people. But, he will need to get out, should he wear a surgical mask when in public?
I did try to limit my public contact and large crowds, but didn't wear a mask.
In reality, it's kind of amusing in away...you try to stay away from crowds and potential contact of germs and such.
Yet the places that I had treatment or follow-ups were loaded with nothing but sick people....
Anyways, they suggest that you limit exposure to places like open buffet style eateries, large crowds, etc....
Best,
John0 -
Welcomemswijiknyc said:thinkin outside the box
thank you for not havin kicked me out! LOL Helping out where I can helps me. Goofy but true
And, yes, please stay with us. I am one who, as John says, swears by the PEG to the Positive. For me, and some others here, it was a Godsend. We are all here to help, as best we can.
kcass0 -
A few suggestions
Hello Arndog64, Well the first suggestion is go out to a nice restaurant before treatment and have a nice dinner as my wife Connie & I have not been to a restaurant since treatment started Nov. 26, 2010. Also during Connie's first chemo treatment we were discussing the peg tube and trying to plan ahead as much as possible and we asked the chemo nurse administering the treatment about some of our questions and she gave us the best advice she could give us. She just said take it "one day at a time" and everything would work out. Connie had two lymph nodes that were badly swollen and trying to break through the skin before she started chemo and after that 1st treatment they were back to normal size within the 1st week. Her chemo doctor said she had a dramatic response after her 1st treatment, we were overjoyed. After her 2nd chemo treatment she had another dramatic response, she ended up in the hospital for the next 34 days with C-diff and Colenitus. I remember leaving her room a few days before Christmas and a small choir were singing Silent Night in the lobby and I began to cry, I didn't know actually why but I could not control my emotions at the time. If someone had asked me why I was crying I could not have told them exactly why except sometimes the cancer treatments send you on a roller coaster of emotions. Well Connie never did her 3rd chemo treatment and started radiation soon after she got out of the hospital. Since then radiation has been pretty much what the doctors and my friends on CSN have said it would be and she finished her radiation treatments March 17, 2011. We are cautiously optimistic right now since she had a ct scan after chemo that did not detect the tumors and she will have another one May 5th, 2011. The process has been the experience of a lifetime and I am proud of my wife as she has taken everything in stride and I can truly say I love her more today than ever before. I wish your husband well and you just try to be prepared for all the ups & downs and stay strong for him. Wishing you both well, Homer & Connie0 -
Mask?arndog64 said:Thank you everyone for your
Thank you everyone for your input. I will post updates and ask questions daily. We are going out to dinner Saturday night. Looking forward to getting out.. I guess after Monday we will be home bound for several weeks. During chemo they say, stay away from large groups of people. But, he will need to get out, should he wear a surgical mask when in public?
When I was going through treatment, most of the time I did not wear a mask in public. When my blood counts got to a certain level, a nurse suggested I stay home, or at least wear a mask in public. When I was in the hospital, and improved enough to be allowed out of my room, I had to wear a mask then.
Most of the masks you see folks wear are good for not sharing YOUR germs, but do not block out other people's germs from getting to you. The doc told me that the best thing the inexpensive hospital mask he made me wear in the hallway did was it made people keep their distance from me. It worked.
More important than the mask, in my opinion, is hands. When his counts get low, watch out for loved ones with germs - especially kids. I put hand sanitizers in several locations, so it would always be handy. And never have I cleaned as much as I did during treatment.
Wanted to wish you all luck for tomorrow. Hoping you had a wonderful, HUGE dinner out Saturday.0
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