TPF neoadjuvant or Cisplatin w/radiation

tom112609
tom112609 Member Posts: 1
edited March 2014 in Head and Neck Cancer #1
Just found this site; hope you can help. From what I seen in the last hour of reading, there are some marvoulous people here. Diagnosed as Stage 4; t-4;n-1;m -0, on November 16th.
basal tongue squamous cell carcinoma. Now that the raging fear and panic has subsided and I only want to throw up every hour when I think about this....I'm trying to sort out different opinions on treatment.Option A: cisplatin (every 3 weeks) concurrent with radiation (daily) over 7 weeks; which is regarded as the "standard of care" in the medical field.
Option B: TPF neoadjuvant therapy (3 times) followed by radiation (7 or 8 weeks, and maybe with more chemo) which seems to be the "latest" approach in the clinicals.
TPF is taxotere; cisplatin; 5-FU. Has anyone got any relevant experience they can share.Thanks, Happy Thanksgiving; and God Bless.

Comments

  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #2
    choices
    I would surmise that very few are going to have experiences with both of the choices you offer. My SCC cancer of tongue and neck was diagnosed in '05 so I am 'old school', I suppose. I had a lengthy surgery, followed by several doses of cisplatin along with seven weeks of radiation.

    I am cancer free.

    That said, I would always put my faith in my oncologist/ENT, whomever is directing this show, or I would find an oncologist/ENT that I DO trust. The technology seems to be changing, improving, nearly daily these days, so if your trusted doctor is recommending a newer methodology, I would give that great consideration, unless someone jumps in here and tells you they had a horrific experience with it.

    Best wishes, and welcome!

    Take care,

    Joe
  • Johnlb09
    Johnlb09 Member Posts: 4
    #3
    I had option A
    Hi

    I had option A (the standard)

    I had squamous cell carcinoma - started in my left tonsil and then also ended up in my lymph node - in my case it was not encapsulated just in the node but also was in the surrounding area - so the radiation destroyed my left saliva gland. Now they were also concerned that it may spread to my right node so they also destroyed the saliva gland on my right side as well. They use conventional ration therapy (CRT) which is more spread out. if it was more encapsulated in the node then they have been able to use Intensely modulated Radiation Therapy (IMRT). So it really depend on your situation - you should talk with your radiation therapist. I ended up with 37 radiation treatments (daily) and three high dose chemos. I handled it fairly well as I was relatively young (45) and physically fit. I lost 20 pounds during treatment. Then after treatment and the last chemo, I couldn't keep anything down (even water) and lost another 25 pounds in three weeks. I never needed a feeding tube and have since gained back about 10-15 pounds from the 45 I lost. I work out regularily and that helps. This happened from May to June this year. then last month they did a neck dissection to remove any remaining tissue from the cancer (part of my jugular vein, some muscle tissue and a bunch of nodes). The operation went well and except for a bit of swelling I am feeling pretty good. Through it all I never lost my appetite. I find I am always hungry now, although I am at a healthier weight.

    During treatment I tried to keep my weight up by counting calories and the amount of protein intake to repair damage done by radiation. It helped a lot

    We are not experts, you must really rely on the best advise from the doctors. Usually a team of doctors will discuss your case. I always like to ask the odds - which one has a better success rate. This is your life that you are dealing with so I would take the procedure resulting in the best odds of a cure.


    John
  • cwcad
    cwcad Member Posts: 117
    #4
    soccerfreaks said:

    choices
    I would surmise that very few are going to have experiences with both of the choices you offer. My SCC cancer of tongue and neck was diagnosed in '05 so I am 'old school', I suppose. I had a lengthy surgery, followed by several doses of cisplatin along with seven weeks of radiation.

    I am cancer free.

    That said, I would always put my faith in my oncologist/ENT, whomever is directing this show, or I would find an oncologist/ENT that I DO trust. The technology seems to be changing, improving, nearly daily these days, so if your trusted doctor is recommending a newer methodology, I would give that great consideration, unless someone jumps in here and tells you they had a horrific experience with it.

    Best wishes, and welcome!

    Take care,

    Joe

    trusted doctors
    February of 07 diagnosed with Base of Tongue cancer. I used cisplatin and 5FU along with radiation for seven weeks. All I can say is that it worked for me. I did not do any research. Just did what the doctor ordered. It appears to have worked for me. I was lucky for I trusted all the doctors that I was involved with. Trusting your doctors is paramount to your recovery.

    Keep trying to eat each day. If it is hard or impossible to swallow continue using your food peg. Drinking lots of water will help in the long run. It is natures nectar. It helps. Please... don't short yourself on hydration. Make sure that the doctors continue to monitor your thyroid during the treatment.

    I was lucky in as much as the treatments did not hurt me much as far as pain was concerned. Mentally I fell apart and waited way to long to seek help. Depression will set in with out you even knowing it is there. Be aware of your feelings and communicate with your doctor about them. Wish I had instead of acting macho(spelled...Like a fool)and trying to tough it out. Aside from depression my biggest problem has been fatigue. It has become better with time but really has improved in these last weeks once my thyroid started acting correctly with the aid of synthroid.

    I am going to get some counseling starting next week. I did not want to go and talk about my feeling. In hind sight it was to my detriment I am sure. You can get aid from reading these forum..for sure. Yet every one responds differently to treatments so continue reading these forums and get a doctor that you trust.

    Good Luck!!
  • ratface
    ratface Member Posts: 1,337 Member
    #5
    Johnlb09 said:

    I had option A
    Hi

    I had option A (the standard)

    I had squamous cell carcinoma - started in my left tonsil and then also ended up in my lymph node - in my case it was not encapsulated just in the node but also was in the surrounding area - so the radiation destroyed my left saliva gland. Now they were also concerned that it may spread to my right node so they also destroyed the saliva gland on my right side as well. They use conventional ration therapy (CRT) which is more spread out. if it was more encapsulated in the node then they have been able to use Intensely modulated Radiation Therapy (IMRT). So it really depend on your situation - you should talk with your radiation therapist. I ended up with 37 radiation treatments (daily) and three high dose chemos. I handled it fairly well as I was relatively young (45) and physically fit. I lost 20 pounds during treatment. Then after treatment and the last chemo, I couldn't keep anything down (even water) and lost another 25 pounds in three weeks. I never needed a feeding tube and have since gained back about 10-15 pounds from the 45 I lost. I work out regularily and that helps. This happened from May to June this year. then last month they did a neck dissection to remove any remaining tissue from the cancer (part of my jugular vein, some muscle tissue and a bunch of nodes). The operation went well and except for a bit of swelling I am feeling pretty good. Through it all I never lost my appetite. I find I am always hungry now, although I am at a healthier weight.

    During treatment I tried to keep my weight up by counting calories and the amount of protein intake to repair damage done by radiation. It helped a lot

    We are not experts, you must really rely on the best advise from the doctors. Usually a team of doctors will discuss your case. I always like to ask the odds - which one has a better success rate. This is your life that you are dealing with so I would take the procedure resulting in the best odds of a cure.


    John

    I don't think it matters
    I had the 3- 21 day regimes of cisplatin. My Oncolady said that was the gold standard. Personally from what I have researched the combination of drugs is emerging as the new gold standard. They both work.

    What is more important is what type of hospital you are being treated at. Choose a Cancer treatment hospital with a mult diciplinary approach to treatment where you have many doctors, Radguy, chemo doctor, nutritionist, dentist, whatever you need available and they meet and discuss your case.

    Here on this site you can find out if your hospital is sanctioned as a cancer treatemnt center and then find how many head and neck cases they do per year. The info is about two years behind, that is you will probably get 2007 numbers. As an example the hospital I started at did 4 Head and neck cases per year. The one I'm at now does 4000 per year. Most of the bigger centers are using the combination drug therapy.

    Get copies of everything along the way. All scans and pathology and films. Maintain your own file so that second opnions are easy. Seek a second opnion if you have any doubt.

    It's doable, wishing you luck on your new journey!
  • Pam M
    Pam M Member Posts: 2,196
    #6
    Wish I Could Be Useful ..
    Been there (still there) doing that - Faced with a similar choice (BOT IV), I did a little research - enough to convince myself that I was not up to the task of reading the info I was pulling up, understanding it, and being able to separate the wheat from the chaff. To make matters worse, when I went to a larger center (I was not able to go to a CCC, I'm just talking about two different cancer treatment facilities, not CCCs), for a 2nd RO opinion, I got a very different recommendation. Scared, worn out and confused, I decided to meet with an MO, and see what "vibes" I got from him. All three doctors assured me (in different ways) that we want to get from point A to point B, and there's more than one road from A to B - the road you take is a matter of choice. It seems to me that most people on theses sites have surgery, then chemo-radiation (standard of care).

    I am on the induction (TPF) chemo, then chemo-radiation road. I just started my second round of chemo Wednesday. Still wonder if I went the right way (natural, I suppose). I had one RO recommending IU and chemo-rads with probably no surgery, and another (larger center) going with radiation followed by surgery.

    I guess any of us could come up with a study somewhere that backs up/supports what we do, so I can't help you with info. I agree with the others, though; if you have a doctor you trust, that's a huge piece of the puzzle.


    I know how hard this decision-making process is - deep breaths
  • dcsecs
    dcsecs Member Posts: 5
    #7
    sorry you have to make this decision
    Tom,
    My husband was diagnosed with scc, base of tongue, stage 4a, July '08. His dr. here recommended cisplatin/radiation at the same time. We went to a big city cancer center and their recommendation was TPF. He chose the later. 3 rounds of Taxotere, cisplatin, and 5-FU (1 week on, 2 weeks off to recover). He then started radiation (IMRT) w/ weekly carboplatin (to keep the cancer cells sensitive to the radiation). It is not an easy treatment and he does have neuropathy in his hands and feet, a direct result of the chemo. The dr. told us the TPF treatment is more toxic than the standard. He also has to deal with lack of saliva and no taste buds. Those are related to the radiation. We are hopeful that those functions will return but he deals with it the best he can. Always carries a water bottle with him. After all that, he is here with us. He just passed his one year post treatment mark and we don't look back and question whether he chose the right one or not. One thing that was essential for us was for both of us to go to all of his doctors appointments. We would both bring notebooks and write down everything we were told and then go home and compare notes. It was amazing how sometimes we each heard something different. At the next appointment we would bring it up and make sure we had the correct information. Try to educate yourself about this as much as you can. It can be scary and overwhelming, but knowledge is power. Good luck with making the right decision for you and try to stay positive.

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