Who's had a good (better?) experience with Radiation/Chemo?

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lizziek
lizziek Member Posts: 27
in Head and Neck Cancer #1
Talked to the oncologist last week about the possible treatment after surgery (weekly chemo (cisplatin) and daily radiation for 6 to 7 weeks)for my supraglottic tumor. I have 2 lymph hot spots seen on my pre-op PET/CT so I need to prepare myself for this scenario).

He told me about side effects both short term and long term and they reflected what I've seen on this board but definitely very downplayed. From this board there appears to be quite a range of experience from hell like pain and permanent losses of swallowing and saliva, PEGs for a long time, etc., to much better experiences. The oncologist said the chemo plus radiation has double the side effects of just radiation. In an email to me he said "Pain/mucositis improves within days/weeks after completion. Loss of taste, and thick sputum and secretions as well. Although xerostomia begins during treatment, it often manifests fully only after healing of mucositis and happens in almost 100% patients." Is this what you guys have experienced?

I wonder if some of this variation I've seen on this board is due to the skill of the radiation oncologist and team in designing the radiation treatment to avoid critical structures such as the salvia glands.

Who out there has had a "good" experience with this treatment, especially long term, and who treated you? Please let me know where the cancer occurred and what stage it was. Anyone forgo recommended radiation and chemo past surgery and/or have had something else done? I want to do my homework while I still feel fine.

Thanks

Comments

  • RushFan
    RushFan Member Posts: 224
    #2
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    This may be a bit of a ramble...
    I had a swollen lymph node that did not respond to antibiotics. After CT scan and fine needle biopsy did not identify type of cancer, the node was removed by my ENT for analysis.

    Mayo Clinic identified the cancer as squamous cell carcinoma...confirmed by MD Anderson.
    (the node had extra capsular extension) MD Anderson generally doesn't remove the node in the beginning, they wait till after treatment, which is usually radiation only. But since we knew about the EC extention, I was given the option of chemo-weekly Cisplatin for seven weeks-to "throw everything" at it. I elected to do so.

    Before treatment: Right & Left tonsil biopsies, BOT biopsies, pulled one tooth and had dental tori removed under anesthesia.

    Final Diagnosis: SCC unknown primary HPV+ T0,N2b
    Completed treatments 4/30/2010
    35 rads (11 postions treating all sides of my neck), 7 once weekly doses of Cisplatin

    I did not get a feeding tube, I really fought that one hard...survived on Boost and Ensure Plus for several weeks. Lost about 35 pounds. I have gained back almost 15. For pain I progressed from a horrible tasting lidocane (?) numbing mouth wash to Liquid Hydrocodone (which was great) and finally to Fentanyl Patches (these saved me).

    The first 2 1/2 weeks of treatment were fine, and then I went steadilly downhill. It was rough. For weeks six and seven I probably slept 20 hours per day...waking up every couple of hours to drink ensure, take pain meds etc. One month after treatment I was starting to feel better. I returned to work part-time about eight weeks post treatment and full time at about twelve weeks.

    Taste totally disapeared toward end of treament, then slowly returned. I can taste most foods, although sweet tastes are fleeting.

    I am still very dry, maybe at 10-20% saliva. I use Stoppers4 mouth spray and I am taking a prescription med to push my salivary action call Evoxac. I think it may be helping and I have no side effects with it so far.

    At almost one year post treatment I actually may feel better than I did the year prior to diagnosis.

    Best regards to you and everyone here at this great support site.
    Chuck.
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #3
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    Well
    I have had a good experience, I am alive and headed to year 16.

    I don't know how anyone could go thru treatments and come out the same as going in. The problem is that everyone reacts different to radiation.... if you burn easy when in the sun then you probably are going to have a tougher time. Everyone reacts differently to chemo and then they add the drugs to help with nausea and they react different to them. Surgery is surgery but then the results are different and the body try's to make a connection to being fine. Then there's the emotional side that all respond differently.

    All this is why the doctor's, nurses and those here who have been thru it them selfs can not predict how anyone is going to do.

    Good luck and I will be praying for you and everyone else that they have very few side effects.

    John
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #4
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    lizzie
    They say everyone reacts differently, just as everyone's C is a little different in location, severity, etc. Kinda think the Saliva glands are part of the treatment when the rads are done to the mouth, but your's might be a little lower. Thing is, Lizzie, this is C, and treatment of H&N C is one of the harshest. You'll just have to play it as it lays, to borrow a golf saying. Lot can depend on the treatment regime, which includes where the rads are applied, and the delivery of the chemo and how it interacts with the rads. I didn't have removal surgery, so I don't know how that'll play into it for you. You'll just have to wait and see, and be as best prepared as you can be with your work, etc.

    I, personally, can't see chemo at the work place- because chemo breaks-down the immune system, and who knows what you might pick-up in the work place, or from others in a social setting, such as you may face. You just might have to take a hiatus for a time with this, but you won't know for sure until the time comes. As for the recovery, I returned to work in a metalworking factory as an Inspector 1 month after my last rad. And in 6 months I was able to eat and drink most anything I wanted, except the extremes I had no business wanting to eat or drink. Life, for me, is great on the other side of treatment, and I'm sure you will come to realize this is true for you.

    Believe


    kcass
  • DominicM
    DominicM Member Posts: 18
    #5
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    Good / great ??? experience with radiation + chemo
    I was diagnosed with SCC Base of tongue, metastatic to lymph nodes and am 43. Had a lump on my neck for about 9 months before finally having it diagnosed (first ENT told me it was nothing to worry about). Reccomended treatment was 3 rounds of Cisplatin (1 every 3 weeks) concurrent with 35 treatments of radiation (IMRT - intensely modulated radiotherapy).
    Went to Boston Dana Farber Institute for second opinion and it was exactly what my docs in Maine recommended. Dana Farber also confirmed the SCC was HPV+ which was a huge psychological relief as HPV+ SCC is typically considered to be technically "curable" or at least in the high 90's % range. I did have surgery to biopsy several areas of my mouth/throat/tongue/ and tonsils which were all negative....only then was the lymph node removed which gave the actual biopsy. PET scan showed the primary location as the base of tongue.(If the biopsy from my tongue was positive they would have left the lymph node in place as the radiation would have most likely shrunk it) Once I healed from the surgery my treatment began.
    Radiation was the mainstay of the treatment with the chemo only adding a few percent bit since I was very healthy and considered to still be fairly young the chemo was also recommended as I should be able to tolerste the treatment.
    I beleive that my experience was better than most. I am currently 3 weeks post radiation and 5 weeks post chemo treatment.
    I did not get a feeding tube although it was recommended as I was near the bottom of my body mass index and did'nt have much weight to lose. I lost around 5 pounds during the treatment and another 15 due to getting pneumonia right when I recieved my last chemo treatment but I got 50% of my weight back within two weeks once the pneumonia cleared.
    I fought the PEG tube because i did not want to get dependent on it and end up having it for longer than necessary due to not using my swallowing muscles. Every day I did what i could to keep drinking and eating. My throat never got sore and the thing that made me lose my appetite was the loss of taste that began right when treatment began. I can now taste most of everything but not sweet.
    I had normal saliva until about the last week of radiation when I got the thick mucous which lasted about two weeks.
    I did not lose my hair but do have just a bit of hearing issues from the chemo....some minor ringing and I noticed that some things sound different (i.e...money/change does not sound normal....does not have that "ching" sound but is a dull sound).
    My neck did peel around 2/3rd's the way into radiation but it was exactly the same as getting a sun burn in my opinion.
    Also after treatment ended, some foods seem to make me get some small blisters in my mouth that go away over night.
    I stayed active and was eating all through the treatment so i was never really fatigued.
    After radiation ended I went about a week to ten days where a lot of things seemed to really burn/sting my tongue, and the back of my throat seemed "raw" and was sensitive to hot and really cold things like ice cream.
    The worst experience of the treatment was right after the first round of chemo when the anti-nausea meds did not seem to work but was "fixed" for the following two treatments by simply doubling one of the meds.
    I never had any pain but did have meds handy just in case. Ultimately I only needed 3 meds for anti-nausea (5 were prescribed but didn't need the others).
    In my opinion the most important thing to do is to keep eating/drinking/swallowing as much as possible everyday of treatment and the absolute most important thing is to keep very very good oral care !!! I did not use the recommended salt/baking soda swish but just used biotene. I did not need to see my prostadontist after the original consult but that doc seemed to have known the most about oral care
    In my opinion I feel that my good experience with the treatment was due to the great job the radiation docs did with mapping out my treatment and having the IMRT only focus on the base of tongue and lymph nodes in my neck and they did a great job at getting the absolute minimum radiation doses to my voice box and salivary glands.
    Good Luck and hope that your experience is as good as I beleive my was. Eat everything you can now and enjoy it...the loss of taste is in my opinion the worst part of the entire ordeal.
  • lizziek
    lizziek Member Posts: 27
    #6
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    DominicM said:

    Good / great ??? experience with radiation + chemo
    I was diagnosed with SCC Base of tongue, metastatic to lymph nodes and am 43. Had a lump on my neck for about 9 months before finally having it diagnosed (first ENT told me it was nothing to worry about). Reccomended treatment was 3 rounds of Cisplatin (1 every 3 weeks) concurrent with 35 treatments of radiation (IMRT - intensely modulated radiotherapy).
    Went to Boston Dana Farber Institute for second opinion and it was exactly what my docs in Maine recommended. Dana Farber also confirmed the SCC was HPV+ which was a huge psychological relief as HPV+ SCC is typically considered to be technically "curable" or at least in the high 90's % range. I did have surgery to biopsy several areas of my mouth/throat/tongue/ and tonsils which were all negative....only then was the lymph node removed which gave the actual biopsy. PET scan showed the primary location as the base of tongue.(If the biopsy from my tongue was positive they would have left the lymph node in place as the radiation would have most likely shrunk it) Once I healed from the surgery my treatment began.
    Radiation was the mainstay of the treatment with the chemo only adding a few percent bit since I was very healthy and considered to still be fairly young the chemo was also recommended as I should be able to tolerste the treatment.
    I beleive that my experience was better than most. I am currently 3 weeks post radiation and 5 weeks post chemo treatment.
    I did not get a feeding tube although it was recommended as I was near the bottom of my body mass index and did'nt have much weight to lose. I lost around 5 pounds during the treatment and another 15 due to getting pneumonia right when I recieved my last chemo treatment but I got 50% of my weight back within two weeks once the pneumonia cleared.
    I fought the PEG tube because i did not want to get dependent on it and end up having it for longer than necessary due to not using my swallowing muscles. Every day I did what i could to keep drinking and eating. My throat never got sore and the thing that made me lose my appetite was the loss of taste that began right when treatment began. I can now taste most of everything but not sweet.
    I had normal saliva until about the last week of radiation when I got the thick mucous which lasted about two weeks.
    I did not lose my hair but do have just a bit of hearing issues from the chemo....some minor ringing and I noticed that some things sound different (i.e...money/change does not sound normal....does not have that "ching" sound but is a dull sound).
    My neck did peel around 2/3rd's the way into radiation but it was exactly the same as getting a sun burn in my opinion.
    Also after treatment ended, some foods seem to make me get some small blisters in my mouth that go away over night.
    I stayed active and was eating all through the treatment so i was never really fatigued.
    After radiation ended I went about a week to ten days where a lot of things seemed to really burn/sting my tongue, and the back of my throat seemed "raw" and was sensitive to hot and really cold things like ice cream.
    The worst experience of the treatment was right after the first round of chemo when the anti-nausea meds did not seem to work but was "fixed" for the following two treatments by simply doubling one of the meds.
    I never had any pain but did have meds handy just in case. Ultimately I only needed 3 meds for anti-nausea (5 were prescribed but didn't need the others).
    In my opinion the most important thing to do is to keep eating/drinking/swallowing as much as possible everyday of treatment and the absolute most important thing is to keep very very good oral care !!! I did not use the recommended salt/baking soda swish but just used biotene. I did not need to see my prostadontist after the original consult but that doc seemed to have known the most about oral care
    In my opinion I feel that my good experience with the treatment was due to the great job the radiation docs did with mapping out my treatment and having the IMRT only focus on the base of tongue and lymph nodes in my neck and they did a great job at getting the absolute minimum radiation doses to my voice box and salivary glands.
    Good Luck and hope that your experience is as good as I beleive my was. Eat everything you can now and enjoy it...the loss of taste is in my opinion the worst part of the entire ordeal.

    Thanks for sharing
    Thank you so much for the first hand experience. Did you get your treatment at home in Maine or at Dana Farber? I plan to get a second opinion on followup care and may elect to do it here in Albany. It may be better to be sick in your own bed with family and friends nearby.

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