Hello...new to this page.

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My husband was diagnosed last month with stage 3 tonsil cancer.  Metastisized squamous cell carcinoma.  After all the appointments with all of the oncologists, he starts on the 19th with chemotherapy and radiation.  35 days of radiation and 7 cisplatin treaments.  Although the surgical biopsy isn't back yet they are sure it is a smoking based cancer.  I am trying to figure out how bad the chemo and rads will be together.  They have told us the side effects of both separately but I was wondering about the rads with once a week cisplatin on top of that.  

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  • KTeacher
    KTeacher Member Posts: 1,103 Member
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    First

    Welcome.  You have found the best place for support and encouragement.The Superthread is a must read when just beginning this journey.  Everyone is different.  Some get through treatment pretty well and others get every side effect warned about and more.  His treatment sounds like what most of us went through.  Stay connected and we will help you through this.  BTW, caregivers are the best.  I couldn't have gotten through with out my husband and support team.

  • phrannie51
    phrannie51 Member Posts: 4,716
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    Hi Maria...

    and welcome to the best forum on the internet!!  You'll find this group of folks very supportive, open and kind....and very knowledgeable....you've found a GREAT place.

    Ok....so you have a list of side effects for the rads, and a list for the chemo.....let me tell you those are just the "list"....it doesn't mean that he will have everything on those lists, and everybody gets side effects to different degrees.  I also had 35 rads, with 3 concurrent chemos (some of us got the big bag of Cisplatin every three weeks, while others got the small bag once a week).....there are two side effects that we all shared.....loss of taste and loss of saliva.  The best thing to do for chemo nausea, is take the anti-nausea meds before he feels sick.....take'em cuz you got'em.  Another secret to feeling better is hydration....LOTS of it.  Drink as much water a day as you can stand....and then drink some more.  Nutrition is also very important....lots of protein to help in healing.  Many of us went to Boost Plus, or Boost VHC (very high calorie), Ensure....etc. because swallowing can get dicey after the first couple of weeks of rads.  Myself, I never had any trouble swallowing all through rads....I had a PEG tube put in before treatment, but never used it once during radiation.

    As KT said, read the super thread....it's the top topic (always).....but because it's so packed with information, DO ask questions as you go along......ALL questions get answered.  Your hubby is going through a rough part on the road of life right now, but I can assure you he will come out at the other end....he will!!!

    p

  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    First

    mariab614,

    Welcome to the H&N forum, I am sorry you find yourself here (like all of us).

    There is no way to know exactly how his body will react to treatments until he goes through the door.  It is generally a rough road, which many of us have completed successfully.  As Bev mentioned, look over the Superthread, it is full of information.

    No matter the roughness, there are tips, tricks and meds to help you manage what is thrown at you.  Something I got, others did not (neck burn), but you deal with them as they occur.

    Good luck,

    Matt

  • ahollie
    ahollie Member Posts: 84
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    My husband has the same

    My husband has the same thing! he had his tonsils out and had two full weeks of chemo and started this monday on the 35 days rads and the chemo one day a week! he had his feeding tube put in a few weeks ago...feel free to message me if you need anything..i can try and help!

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Welcome...

    I stole this pretty much from another newbie that I just responded to with it, but it's applicable here as well....

     

    First off relax..., you have found a great site, tons of experienced survivors, warriors, and care givers such as yourself.

    I was in a place similar almost five years ago now...

    STGIII SCC HPV+ Tonsils, and a lymphnode.., nine weeks of chemo in cycles like you (Cisplatin, Taxotere and 5FU)...

    I also had an additional seven weeks of concurrent weekly chemo (Carboplatin) with the 35 daily rads, similar to what you mention.

    Good news is I'm all clear and clean at nearly five years post treatment.

    The not so good news, the treatment is (or can be) brutal...

    I lost all taste during the first week of those cycles, but it would come back just in time to start over again. But during radiation, I lost it about 3 weeks in, until a few months post rads, along with most all saliva.

    It took a long time to get all taste and saliva back, six months or so jusy to have enough to survive well if it never got better (three months or so I could eat, just didn't have much taste yet).., but eventually it did return. Within two years, I had 100% taste back, and nearly 95% or so of the saliva, a little dry at night sleeping.

    Those same periods, half way through rads, to a few weeks post are the worse.. Your throat will be like hamburger, or feel like someone slipped you a glass of drano.

    Hydration, calorie intake and pain management..., that is the key to survive if all else is going well...

    This is the main period when most need a PEG.., some don't tolerate chemo well..

    The big thing here I can tell you...

    Everyone is different, and responds differently.

    In reality, I was very lucky, I rarely got sick, could handle feedings with pain meds, and myself just swapped over to all liquids during the rough periods (Ensure Plus)..

    It's very doable, but very rough at times...

    The first thread on this forum The SuperThread has tons of info to get you started... Others will chime in for a welcome also..

    Tobacco derived, HPV or whatever..., treatment is pretty much the same right now for all of us.

     

    Survival is most important, you do whatever you have to do, to survive cancer and treatment...

    Again,

    Welcome ~ John

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
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    wishing your hubby the best

    wishing your hubby the best as he goes thru this.  like the others said, come here and ask any questions, he will get thru this and we will be here cheering you on.  sorry you had to find us but i'm very glad you are here.

    God bless,

    dj

  • donfoo
    donfoo Member Posts: 1,773 Member
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    welcome

    Welcome. There are many great folks here and lots of good knowledge. Come often and read and get up to speed. Ask questions if answers don't come easily. Rads and chemo together generally take a toll and rarely does anyone just carry on like normal. I was on a three week chemo cycle and that along would knock me down for the first week of the cycle. Next two weeks I would get going and feeling just well enough to get whacked again. Chemo and rads together were different. Very few side effects from the weekly chemo but the rads side effects got increasingly painful. We all survive treatment, some get through with less side effects, some with more. Get as informed as you can so there are no surprises or betting blindsided.  Again, welcome. Don

  • jim and i
    jim and i Member Posts: 1,788 Member
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    Welcome, everything has

    Welcome, everything has pretty much been said but I wanted to welcome you and let you know we are I am praying for you.

    Debbie

  • Steve5
    Steve5 Member Posts: 147
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    Building on what John and others have ....

    Building on what John and others have put forth, I was diagnosed with stage IV SCC advanced tonisl cancer with two lymph nodes on one side - I woke up to find a lump on my neck and 5 days later after a CT and biopsy they gave me the news.  A few days later I met with my chief Head and Neck and started to get a "plan" as Matt would say.  This site and all of those on it, helped me prepare, learn about what was to come and was a lifeline to make it through.  Yes the treatment can be tough but it is doable and you can get through.  My treatments were 35 rad treatments at 2 Gy per treatment and 7 cisplatin once per week at 40 dose - I started just before thanksgiving and ended January 17th, 2014 - two weeks in I went to Ensure, 6 bottles a day and stayed on that until just before the end where my throat got too sore to drink Ensure -prior to starting treatments I had the salivary gland on my good side moved to preserve it, it is producing saliva, I also had a power port put in to get chemo and fluids in - much easier - and I had  PEG tube put in, if you are getting one it is better to get it before than during treatments, just easier not to deal with during I think - I started using the PEG just at the end and lived on osmolite, 6 bottles per day and Gatorade 64 plus ounces per day for hydration and healing - after about 3 weeks I started on soft foods and graduated from there - at 7 weeks I could eat and taste everything - I am fortunate, for others this can take longer and taste can take from 1-6 months to come back - not all salivary gland use comes back and I drink water with almost every bit depending on the food - I will have a 12 week PET/CT scan in April to see if all is clear  -

    Support from loved ones, family, friends and this site is paramount to someone not only making it through but understanding, dealing with, coming to terms with and living - you come out the other side of treatment changed - sometimes you have to use a device called a therabite to make sure your mouth opening does not shrink and make it difficult to open and take in food, the taste of water will change along the way but hopefully will change back, you will get tired, very tired a little after chemo, after the steroid day you will be tired, so rest and hydrate - exercise if you can, rest and sleep when you can, take in fluids always, get nutrition, stay ahead of any nausea, they will most likely give you something for this, and deal with pain as you deal with it, if you need something take it (what the docs prescribe) and if you don't then don't is my advice on that -

    The radiation oncology nurses I found to be the best, have the best info and help with everything, also there should be a support team in place that will visit with you weekly -

    This is a tough road as others have said, but you can do it - you can do it -

    Lean on the good people on this site when you need to - I did and it made all the difference

    Feel free to email me if you like, I have alot to give back for all the help I received here and hopefully will continue to do so long into the future

    Steve

  • wmc
    wmc Member Posts: 1,804
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    Welcome to the H&N form

    Welcome and sorry you need to be here. But if you do need a suport group I feel you found the best one. I have no first hand knodglege on chemo or Radaition only the cancer. I was T3; N0; M0 SSC of the larynix with just surgery and neck dissesion on both sides. 86 lymph glands removed as well as my larynx. Breath through my neck now. The outhers have gone through the RAD and Chemo and will be able to answer your questions. My prayers for you and your husband. 

  • cureitall66
    cureitall66 Member Posts: 913
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    Welcome...

    Welcome and you have come to the right place! This forum is filled with wonderful, caring people. There are many on here that have hung around this forum for quite a long time just to help here, and there are some of us that have been here for a few years, and some just fresh out of treatment. Either way, you will get alot of tips along the way...

    I was a caregiver of a loved one that was dx Aug 2012 with Stage IV, HPV16+, BOT (base of tongue), with two lymph nodes. He started tx early Oct 2012 and finished the end of Nov 2012.  PET scan in Feb 2013 was NED.  Tx consisted of 35 rads, 7 chemo. We will be celebrating 2 years this Nov 2014!

    Treatment is tough, but doable.  Be sure to check in here as there are plenty of us to help you along.

    God Bless,

    ~C