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  1. #1
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    First post

    On April 30 I was diagnosed with Squamous cell carcinoma of base of tongue. I have gone through 7 weeks of radiation (5 days a week) and 3 rounds of chemo. my final does of chemo was on June 27th and my last radiation treatment was on July 2.

    I am on my way to a Pet Scan to determine how things went with my treatment. I will get the results on Weds.

    I have been a member of this forum since my diagnosis but am making my first post now. And I don't know why I waited this long or what prompted me to post this message just minutes before I jump in the car to my Pet Scan.

    Sorry about the brevity.

  2. #2
    Moderator Top User IndyLou's Avatar
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    Hello, I'm sorry to hear that you've been diagnosed with this cancer, but I'm glad that you found your way to this site when you did.

    How are you feeling? The radiation to the mouth area starts out OK, but I'm sure that by the time you finished your treatments, it did not feel pleasant. Are you suffering from any side effects; e.g., mucositis, difficulty eating, painful mouth, hoarseness, lack of saliva? What kind of chemotherapy did you receive?

    It's interesting that they're choosing to do the PET scan now, as opposed to prior to your treatment. I would've thought they've want to know if there was any metastasis prior to treatment, as opposed to after the treatment.

    If you have any questions, please let us know. I made the mistake of thinking that things would get immediately better following my treatment, but it took a number of months before I regained the ability to eat reasonably normal foods, and speak normally.
    Age 54 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED
    Spring 2019 - NED

  3. #3
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    Thanks for the reply and welcome to the board!

    For the sake of being complete I will elaborate on what I have experienced so far:

    Back in March I had a really bad sore throat that had me at the walk in clinic. I was examined, checked for type A Strep Throat and when the swab came back negative I was told to take an antibiotic for 10 days. Did that and at the end of the 10 days still had a sore throat. Went back to the walk in clinic and was given a different antibiotic by a different doctor who told me that even if this did clear up my sore throat/fever I should see an ENT.

    So after seeing an ENT it was determined that my left tonsil should be removed. The ENT said he was going to do a some kind of quick biopsy on the left tonsil while I was on the table and (with my permission, which I gave) if the biopsy showed cancer he would remove the right tonsil. The biopsy did show cancer so he removed the right tonsil.

    The cancer I was diagnosed with is Type 16 positive. They did do an initial pet scan to determine the size and specific areas that were infected. Pet-scan showed that cancer was in the left base of my tongue and (possibly is what I was told) in the lymph nodes. They said they could not be 100% sure since the pet-scan results showed a slight glowing and were not as "bright" as the tongue area. They attributed this to the surgery since they were moving stuff around taking out my tonsils and said that the lymph nodes could still be be showing a reaction from the tonsillectomy.

    After the oncologist reviewed the pet-scan results I was told the plan was to go with 35 doses of radiation (primary treatment) and 3 rounds of chemo (secondary treatment) to eliminate the cancer. Not control, not reduce, but to eliminate the cancer. They were very clear though that they could not be 100% on their out look but were very confident they could accomplish this. That was fair enough for me.

    They said I would not be able to work through this treatment and wanted me to have a feeding tube and a port put in during the treatment. This is where the 1st "argument" came into my treatment. I said, no to the port, no to the feeding tube and no to taking off/disability from work. The thought (and vision) of being fed from a tube just freaked me out completely. Also, I had a LOT of unused vacation time and a GREAT boss at work so after dealing with HR's concerns, a tentative "schedule" was mapped out that would allow me to take partial time off in gradually increasing increments as I went through the treatment. My thought was to (at my worst) start the beginning of my day as normal and have my boss and other team members come in to relieve me later in the day. Initially I worked a whole day, after going 2 weeks into treatment, I would go down to 6 hours a day, after 4 weeks go down to 4 hours a day, and the final 2 weeks I would work 2 - 4 hours depending on the work load/my condition. After the 7 week treatment was done I was in a perfect position to take a full week off since (coincidentally) my job was in a shut down period of 2 weeks.

    For the most part I kept to my planned work schedule. The feeding tube was another story. Everyone but my medical oncologist told me I would NOT be able to get through the treatment without one. What my medical oncologist told me was that I could try and he would support my decision, BUT, (and he was very clear on this) if my weight started dropping too much he was going to join the naysayers and insist on the feeding tube.

    The first week I lost over seven pounds and the medical oncologist let me know he was REALLY unhappy with that. I told him I would gain the weight back in the second week and get back on my "schedule" of only losing 1 - 2 pounds a week (average estimate) for the remaining treatment schedule. This setback was totally on me. I thought I was prepared for the rigours of radiation and chemo but (obviously) I wasn't. The radiation wasn't bad since it was only the first week but the chemo was hell.

    And so I knuckled down.

    I looked up everything I could on nutrition and (with the help of my nutritionist) came up with a calorie count I needed to maintain that factored in my activity level. With the job that I have we worked out that I needed 2700 calories a day to hold my weight during the full time portion of my job. Considering I needed to get back those 7 pounds I lost I targeted 3000+ calories a day in the hope that I could get back at least half the that before the next "weigh in" in a week.

    Ultimately I lost 14 pounds over the 7 weeks of treatment and lost another 5 in the 2 weeks after. I pretty much held to my work schedule I laid out.

    It was not fun but through it all I just kept putting one foot in front of the other. What also helped was my family, friends and co-workers. I am not sure I would have made it through the treatment and stuck to my goals without their help and support.

    So today is the day. I had my Pet Scan on Monday (Which I had to pay for. I will elaborate on the insurance companies denial after I get more info about the denial) and I see my medical oncologist this morning at 9:30 to get the results.

    I will post back later today with the results.

  4. #4
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    Quote Originally Posted by IndyLou View Post
    Hello, I'm sorry to hear that you've been diagnosed with this cancer, but I'm glad that you found your way to this site when you did.

    How are you feeling? The radiation to the mouth area starts out OK, but I'm sure that by the time you finished your treatments, it did not feel pleasant. Are you suffering from any side effects; e.g., mucositis, difficulty eating, painful mouth, hoarseness, lack of saliva? What kind of chemotherapy did you receive?

    It's interesting that they're choosing to do the PET scan now, as opposed to prior to your treatment. I would've thought they've want to know if there was any metastasis prior to treatment, as opposed to after the treatment.

    If you have any questions, please let us know. I made the mistake of thinking that things would get immediately better following my treatment, but it took a number of months before I regained the ability to eat reasonably normal foods, and speak normally.
    And as to your questions:

    I am still feeling the effects (Albeit slightly) of the radiation. I do feel a little "flemmy" in my throat for lack of a better definition. Mouth and throat pain is almost gone completely. For the sake of completeness, my last chemo/sis-plat treatment was June 27 and my last radiation treatment was July 2.

    My voice is almost back to normal but still kinda off.

    My mouth and throat never dried out totally but boy oh boy, did my saliva get thick.

    Eating is still problematic. I can swallow some foods without too much effort but meats, breads, etc. require a healthy swig of water before attempting to swallow.

    Right now I am feeling nervous. All I can do is wait to see my Doctor. I don't like waiting.

    But I am hanging in there.....

  5. #5
    Moderator Top User IndyLou's Avatar
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    Hello, Riktar-

    Many of your experiences sound almost like mine. When you say your cancer was caused by "Type 16," I assume you mean HPV-16, which is a very common cause of head & neck cancer in males age 40-60. The good thing about this type of virus is that the cancer responds very well to treatment.

    I enjoyed reading your comments about a port and feeding tube. My radiation oncologist recommended the feeding tube, though I wasn't completely on board with it. In fact, I didn't even try to use it initially, because I didn't like the "gurgling" sounds it would make or the sensation of liquid formula going directly into my stomach. They also recommended a port, but I declined as I had the feeding tube, and I didn't want any more "attachments" sticking in my body. This decision became very painful later when in my third week of chemo, I became dehydrated, and it was very difficult for them to insert an IV in my arm during my weekly infusion. I learned my lesson after that, and tried to use my feeding tube at least daily.

    Nonetheless, I lost about 12% of my body weight before I stabilized. The radiation treatments made my tongue swollen and my gums bright red. I could not bring myself to eat, and most things that I tried tasted horrible to me. I literally lost the desire to eat.

    Do not be surprised if you experience hoarseness for a while. I got to the point where I too, was "phlegmmy" and had to spit constantly. Your saliva production and taste will eventually come back, but do not be discouraged if it takes months, rather than weeks. A bottle of water will be your best friend while eating, for a little while.

    My ability to work was very similar to yours. I didn't want to take time off, despite a manager and company that were very open to me taking whatever kind of leave I needed. My radiation appointments were at 1pm, so I would leave work around noon, get my radiation (and weekly dose of cetuximab), and then I would usually work from home as my job allowed it. Over time though, I would come home after the radiation, and just sleep the remainder of the afternoon. Some of my tiredness came from the radiation and treatments, but some of it was undoubtedly from lack of eating. The formula I was using required 6 cartons per day, just to get 2100 calories, and that was about what I needed just to maintain my weight. Some days, I was only able to drink 5 cartons.

    The next few months will be challenging, but hang in there, and be patient. I think your scan results will be good, too.
    Age 54 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED
    Spring 2019 - NED

  6. #6
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    Sorry it took so long but I have been on the phone with allot of people that were rooting, praying and believing in me.

    Yes it was HPV-16 and my medical oncologist said the same thing to me as well that it does respond well to treatments.

    And my taste for food went (literally) right in the toilet as well. Never thought food could taste so horrible. About the only thing I could do was fool my tongue by sniffing a good dose of what I was about to eat and then drink it down as fast as I could before my tongue "caught up" with its sensation. As the pain in my throat started getting severe enough I started using the "Magic Mouthwash" a the first part of my meals. I did note that the simpler the meals were (Think unseasoned vegetables) the longer it took for my tongue to "mis-taste" the food.

    I am almost done with relying on boost and ensure to get my calories in. As grateful as I am to the people who make that stuff, once I am totally back on regular food I NEVER want to see another bottle of the stuff.

    All that being said, my pet-scan results showed complete remission. I am cancer free. Almost broke down in the oncologists office when he told me.

    I still have some healing to do but at this moment I don't think I ever felt better.

    I will continue to monitor the board, ESPECIALLY in the throat caner area and lend whatever advice and encouragement I can. While you did just read my first post 2 days ago I have been a member of this board since April. And I don't know why I waited so long to make my first post.

  7. #7
    Moderator Top User IndyLou's Avatar
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    Jan 2014
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    Hello, Riktar...I'm glad you chose to share your experience with head & neck cancer. It will undoubtedly be of value to many others who frequent this forum. I wish you a long, healthy, cancer-free life. Please check in whenever you like, and comment or share your experiences with others!
    Age 54 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED
    Spring 2019 - NED

 

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