Hello from new member in Washington DC

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Marc in Washington DC
Marc in Washington DC Member Posts: 6
edited March 2014 in Head and Neck Cancer #1
Hello everyone. My name is Marc. I work for the FDA and live in Washington, DC. I have been a stable, healthy CLL (Chronic Lymphocytic Leukemia) patient, in "watch and wait", since 2002, when in May, 2010, I experienced a rather sudden eruption of my right tonsil, which was biopsied and diagnosed as Stage 4 SCC, which had spread to a lymph node in my neck, which had swollen, and two lymph nodes near my right ear. I had 4 treatments of Cisplatin, Taxitir (spelling?), 3 weeks apart. Treatments 2, 3 and 4 were supplemented with 5FU via an infusion pump I wore at home from Friday afternoon until Monday afternoon. The chemo phase was hell. Then in September 2010 I began 34 daily doses of radiation to my head and neck areas, supplemented by Erbitux infusions on Mondays. After 4 doses of Erbitux we had to stop the radiation for one week because my mouth was just too painful. My chemo oncologist decided to stop the Erbitux. In a week the radiation resumed, and this morning I had my 22nd treatment, with 12 more to come this week and the next two weeks, at which time I am told I have a 90% or better chance of being cured. I should add that after just the first chemo, the tumor behind my right tonsil disappeared more than 90%, and the swollen node in my neck reduced also around 90%. After the 2nd chemo my chemo oncologist (my radiation oncologist is a different doc) told me the tumor was 100% gone and the node was totally normal, and he told me that the response to the chemo was unprecedented, that he had never seen so dramatic a response to chemo, and that the chemo response would correlate with the probability of a cure from the subsequent radiation. So here I write, on a chilly Wednesday Washington DC morning, with 12 more radiation treatments to go. My mouth, tongue, cheeks and throat are sore. Thus far I have stubbornly avoided a feeding tube, and I am now drinking a few cans of ensure a day, some milk, occasionally mixed with oatmeal but loose enough to drink it. I can eat Chinese wonton and eggdrop soup, and can somewhat taste them. I can taste chai tea with milk and sugar. I can't really eat or taste anything else. I would welcome the advice of anyone on this website, which I am happy and lucky to have found. I am 53 years old, and look forward to just having the CLL I started with, because I have felt generally healthy since I was diagnosed with that little gift in March 2002.
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  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
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    Welcome, Marc
    My 52-year old husband had three treatments with Cisplatin and 35 radiation treatments, ending about a month ago. Jim lost weight and has regained some of it. His greatest complaint, to date, is overwhelming fatigue.

    Jim had a feeding tube but did not use it: he did not experience the sores so many people here post about. This may be because he had all teeth extracted prior to beginning treatment - dentures were already in his future and this was just one more thing to not have to worry about during treatment. Jim continued to eat EVERYTHING throughout his treatment. Just last weekend he had a petit mignon and baked potato - still can't manage the salad without teeth, although he doesn't consider "rabbit food" to be a great loss :)

    Others with experiences similar to yours will be posting. They are a treasure of information and are kind enough to share.
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
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    Welcome Marc
    Great news so far with your treatment and we always like to hear positive news on this site. As far as eating goes, I put down several protein shakes each day, along with the oatmeal, soups etc. Soft boiled eggs were easy to eat also. Don't be stubborn with the feeding tube, if you need it, get it. There are no style points given out in this game. Food is medicine. One additional point, I recommend to get some sort of exercise each day. It may help with the fatigue. I tried to take a 30 minute walk each day and really believe it helped me both physically and mentally. Good luck with the remainder of your treatment. Cheers

    Jimbo
  • Scambuster
    Scambuster Member Posts: 973
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    CLL
    Marc,
    You can check my Blog for an interesting story from a freind I have with CLL. Maybe of interest. Hope the rest goes OK. Keep us posted.

    Scam
  • Greend
    Greend Member Posts: 678
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    Identical story
    Same diagnosis, same treatment in 1996. You will learn to love buffet restaurants :>)
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Similar Treatment
    Hi Marc, welcome to our world....

    I had a very similar treatment for similar diagnosis.

    January 2009, STG III SCC Right Tonsil HPV+, one lymph node (tumor) on the same side. I had the tonsils removed and a port installed. I never had the PEG and for me it wasn't an issue (about 95%+ 0n here have had the PEG and swear by it though).

    I started nine weeks of chemo in three week cycles, Cisplatin, Taxotere, and 5FU in the pump. After that I had seven weeks of concurrent chemo/rads, Carboplatin weekly and 35 daily injections of Amifostine (Eythol) followed with 15 minutes or so of radiation.

    Like you (and not so unprecedented, LOL) the tumor was noticeably smaller after the second round of chemo and completely gone after the 3rd (confirmed with a CT).

    The last few weeks of rads, and the next few after are the roughest. I also mainly only survived at that time on meds to numb the throat, then water, Ensure, and soft sliced DelMonte Peaches to keep the throat muscles working.

    I'm going on sixteen months post treatment, have regained nearly 80%+ of both taste and salivary function. All PET/CT scans have came back clean and NED, all blood work has returned to normal ranges. I just had my six - eight week port flushing and the ENT poke, probe, scope and say EEEE yesterday. He was very pleased with his work and my progress...LOL.

    Hang tough, it's a rough diet, but you have many here that have traveled the path and made it out with great results and minimal side effects, you can too.

    The healing process is a very slow one, measured in months more than days or weeks...it definitely gets much better. Everyone is different and have their own individual quirks, successes and set backs...you'll be the same. But there are many things the same that we all have seemed to encounter, you will also. Stay with us and I'm sure with the huge base of survivors here, we can help you, as well as learn from you.

    Best,
    John
  • Hondo
    Hondo Member Posts: 6,636 Member
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    Hi Marc
    I to just want to welcome you here to CSN
  • denise417
    denise417 Member Posts: 32
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    welcome
    Welcome Marc, sound like you are doing fine, keep going. I do have the peg tube put in and I also eat. I just had a Big Mac, fries,and a can of nutrional feeding ...LOL....now how is that for a healthy diet. (I am low in weight and the peg tube has been wonderful for me, put on 8 lbs in one week, something I could never, never do) So, if you need it, get it, you still can enjoy what you want. denise
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
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    denise417 said:

    welcome
    Welcome Marc, sound like you are doing fine, keep going. I do have the peg tube put in and I also eat. I just had a Big Mac, fries,and a can of nutrional feeding ...LOL....now how is that for a healthy diet. (I am low in weight and the peg tube has been wonderful for me, put on 8 lbs in one week, something I could never, never do) So, if you need it, get it, you still can enjoy what you want. denise

    Welcome
    Sounds like you are doing very good, Marc. You'll be okay. I'm 18-months, post-treatment, and still drink Ensure for breakfast. Taste comes back in time, and life really is good.

    kcass
  • D Lewis
    D Lewis Member Posts: 1,581 Member
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    Welcome, Marc
    Marc

    Sounds like you are right on track. Keep up the good work. And, come here for the best answers to your questions. Everyone here has relevant experience, and we're all willing to share.

    Deb
  • Pam M
    Pam M Member Posts: 2,196
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    Welcome, Marc
    Glad to hear your chemo's doing it's work. sounds like you've also got a good attitude on your side. Keep up the good work, and keep us posted.
  • Pam M
    Pam M Member Posts: 2,196
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    Welcome, Marc
    Glad to hear your chemo's doing it's work. sounds like you've also got a good attitude on your side. Keep up the good work, and keep us posted.
  • adventurebob
    adventurebob Member Posts: 691
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    Welcome
    Hi Marc,
    Sorry to hear about your cancer. I've been getting treatment for nasopharyngeal cancer and just finished up 3 rounds of Cisplatin. I'm scheduled to start radiation/chemo in a few weeks and will be getting the PEG installed a few days prior as it has been recommended overwhelmingly by the people on this board and my docs. It sounds like your treatment is going really well. Always happy to read that. Let us know when you finish up. My best,

    Bob
  • sweetblood22
    sweetblood22 Member Posts: 3,228
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    Welcome
    Hi Marc,
    Sorry to hear about your cancer. I've been getting treatment for nasopharyngeal cancer and just finished up 3 rounds of Cisplatin. I'm scheduled to start radiation/chemo in a few weeks and will be getting the PEG installed a few days prior as it has been recommended overwhelmingly by the people on this board and my docs. It sounds like your treatment is going really well. Always happy to read that. Let us know when you finish up. My best,

    Bob

    Hi Marc! Welcome to the
    Hi Marc! Welcome to the neighborhood. :)
  • patricke
    patricke Member Posts: 570
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    Welcome To The Neighborhood
    Hey Marc,

    Welcome to the neighborhood, I'm pretty new myself; it's a great place! It sounds like your treatment is going very well, congratulations! If you need a tube to maintain your health, go for it; anything to aid in your recovery. I'm on a tube, and when I'm out and about, I dine on a nutritionally complete liquid medical meal replacement called Fibersource HN (FDA approved of course). At 300 calories a can, just a couple of these babies does the trick in providing a complete gourmet meal, unless I'm really hungry, then I go for that 3rd can. You might get more bang for your buck with Fibersource, or something akin to it, e.g., Jevity, Jevity Plus, if you need extra calories.

    PATRICK
  • Greg53
    Greg53 Member Posts: 849
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    patricke said:

    Welcome To The Neighborhood
    Hey Marc,

    Welcome to the neighborhood, I'm pretty new myself; it's a great place! It sounds like your treatment is going very well, congratulations! If you need a tube to maintain your health, go for it; anything to aid in your recovery. I'm on a tube, and when I'm out and about, I dine on a nutritionally complete liquid medical meal replacement called Fibersource HN (FDA approved of course). At 300 calories a can, just a couple of these babies does the trick in providing a complete gourmet meal, unless I'm really hungry, then I go for that 3rd can. You might get more bang for your buck with Fibersource, or something akin to it, e.g., Jevity, Jevity Plus, if you need extra calories.

    PATRICK

    Welcome Marc!
    Marc,

    Sorry you found yourself here, but welcome to the group! Sounds like you're doing well. Just wanted to add what a few others have said - consider the tube a good thing. It's easy and it's helped a lot of us get thru the tough times. Keep plugging away and good luck with the rest of your treatments!

    Positive thoughts coming your way!

    Greg
  • Glenna M
    Glenna M Member Posts: 1,576
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    Welcome
    Hi Marc, just wanted to welcome you to the family. It's a very large family of very caring people who will always be here for you.

    My best,
    Glenna
  • Marc in Washington DC
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    I'd like to thank all the wonderful people who replied to my posting. I found the replies inspiring, comforting, encouraging and fascinating. (Really!) I have 10 more radiation treatments to go, and then I may be done with treatments, assuming they worked. I'm still having trouble finding stuff I can eat. I find the Stawberries and Cream flavor of Ensure somewhat less unpleasant than some of the other flavors I've tried -- not that I can taste all that well...

    Is anybody wondering how Michael Douglas' treatment was completed so fast???

    I just ready about Tony Gwynn who attributes his oral cancer to chewing tobacco.

    A hearty thanks to all of you who read and/or answered my post, and who have posted themselves. Cheers, Marc
  • Marc in Washington DC
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    CLL
    Marc,
    You can check my Blog for an interesting story from a freind I have with CLL. Maybe of interest. Hope the rest goes OK. Keep us posted.

    Scam

    How do I find your blog, Scam? And thanks, Marc
    How do I find your blog, Scam? And thanks, Marc
  • Pat in SC
    Pat in SC Member Posts: 5
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    I'd like to thank all the wonderful people who replied to my posting. I found the replies inspiring, comforting, encouraging and fascinating. (Really!) I have 10 more radiation treatments to go, and then I may be done with treatments, assuming they worked. I'm still having trouble finding stuff I can eat. I find the Stawberries and Cream flavor of Ensure somewhat less unpleasant than some of the other flavors I've tried -- not that I can taste all that well...

    Is anybody wondering how Michael Douglas' treatment was completed so fast???

    I just ready about Tony Gwynn who attributes his oral cancer to chewing tobacco.

    A hearty thanks to all of you who read and/or answered my post, and who have posted themselves. Cheers, Marc

    I also had this cancer. My treatments only consisted of 38 radiation treatments followed by surgery (modified neck desection). I survived on Carnation Instant Breakfast - vanilla only - I used to drink as much as 5 glasses a day with very cold milk. That was in 1995 15 years out - I still to this day drink a glass of carnation every morning which helps me take my medicine as I cannot swallow any pills with water. They just stick in my throat with water. I just love salmon sushi - no rice - and any shell fish. Hang in there, you will be able to eat much more things later. Good Luck Pat
  • Greend
    Greend Member Posts: 678
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    Pat in SC said:

    I also had this cancer. My treatments only consisted of 38 radiation treatments followed by surgery (modified neck desection). I survived on Carnation Instant Breakfast - vanilla only - I used to drink as much as 5 glasses a day with very cold milk. That was in 1995 15 years out - I still to this day drink a glass of carnation every morning which helps me take my medicine as I cannot swallow any pills with water. They just stick in my throat with water. I just love salmon sushi - no rice - and any shell fish. Hang in there, you will be able to eat much more things later. Good Luck Pat

    Carnation Instant Breakfast
    I too am a Carnation lover. It has less iron than Ensure so is easier on my system. Ironically, I find it difficult to drink any cold beverages and in fact I find warm drinks (especially water) go down easier.

    Lots to learn on this board.

    Denny