Any advice?

carrie2010
carrie2010 Member Posts: 8
edited March 2014 in Head and Neck Cancer #1
Hello everyone,
In the last few months I have been diagnosed with melanoma, I have had two surgeries and now I'm cancer free which is excellent , but now I'm getting ready to start high dose interferon for 4 weeks and after that I've got 5 weeks of on sight radiation and then 11 months of low dose interferon. I'm scared to death! I have read so many horror stories that I'm unsure what to expect. I am 25 years old , I have two young children , my husband is in the military , and all of my family are 12 hours away , so most of this I'm facing alone so if anyone can give me an idea of what to expect I'd greatly appreciate it. Am I going to be able to do day to day activities , take my kids to the park , zoo ect. or am I going to be sick all of the time? How am I going to make it through this next year without my kids feeling horrible for me? I don't want them to see there mommy sick all of the time when they she me as being fine now. Please anyone who's been through this help me know what to expect. Thank you.

Comments

  • Fire34
    Fire34 Member Posts: 365
    #2
    Carrie
    Carrie
    I am not sure but I believe that all of us here(Head&Neck) have not had interferon for our chemo. Where exactly will they be radiating? If it is in the neck area you will have some of the side effects read here. I am not sure but with any tyoe of radiation make sure you keep your weight up.
    My wife and I believed in the positive mental attitude that got me through all of my treatments.
    The Hospital where you will be treated check for support groups etc.to help you get thru this. Remember that you are not alone you have all of us here praying for you
    Dave
  • carrie2010
    carrie2010 Member Posts: 8
    #3
    Fire34 said:

    Carrie
    Carrie
    I am not sure but I believe that all of us here(Head&Neck) have not had interferon for our chemo. Where exactly will they be radiating? If it is in the neck area you will have some of the side effects read here. I am not sure but with any tyoe of radiation make sure you keep your weight up.
    My wife and I believed in the positive mental attitude that got me through all of my treatments.
    The Hospital where you will be treated check for support groups etc.to help you get thru this. Remember that you are not alone you have all of us here praying for you
    Dave

    Dave
    Thank you for the reply. The Doctors found melanoma in my head with a piece of lymph node in it. They did the sentinel biopsy of the lymph nodes and everything came back clear. There doing 4 weeks of high dose in interferon A , then 5 weeks of on sight radiation of the head and then 11 months of low dose interferon A. Did I post in the wrong spot for this type of cancer? How long have you been cancer free now if you don't mind my asking? I will pray for you and your family as well and thank you.
  • Fire34
    Fire34 Member Posts: 365
    #4
    carrie2010 said:

    Dave
    Thank you for the reply. The Doctors found melanoma in my head with a piece of lymph node in it. They did the sentinel biopsy of the lymph nodes and everything came back clear. There doing 4 weeks of high dose in interferon A , then 5 weeks of on sight radiation of the head and then 11 months of low dose interferon A. Did I post in the wrong spot for this type of cancer? How long have you been cancer free now if you don't mind my asking? I will pray for you and your family as well and thank you.

    Carrie
    You are probably in the wrong section, this is Head & Neck. Go back to discusion boards and I believe there is one for melonoma. I started treatments back in Aug. 09 and finished Nov. 09 I had 8 weeks induction chemo with Erbitux, Taxol & carboplatin. Then 5 weeks concurrent chemo/rad with 5FU, Erbitux(weekly) & Hydroxyurea, Radiation was twice daily. week on week off. My first PET was negative in Feb 10. I am about 4 months out now, still have some of the common side effects with my type of treatment, but things are getting a lot better. The type of radiation I had was IMRT which is quite accurate and there is not any radiation going where it is not suppose to. I went to University of Chicago for my treatment. Hope everything works out for you, after talking to people on this board all person with cancer are in my prayers, again Best Wishes
    Dave
  • micktissue
    micktissue Member Posts: 430
    #5
    carrie2010 said:

    Dave
    Thank you for the reply. The Doctors found melanoma in my head with a piece of lymph node in it. They did the sentinel biopsy of the lymph nodes and everything came back clear. There doing 4 weeks of high dose in interferon A , then 5 weeks of on sight radiation of the head and then 11 months of low dose interferon A. Did I post in the wrong spot for this type of cancer? How long have you been cancer free now if you don't mind my asking? I will pray for you and your family as well and thank you.

    Carrie
    When you say the Drs "found melanoma in my head," where, exactly, did they find it?

    Depending on where it is and where they decide to radiate, this might be the best site for you. Melanoma is just another form of squamous cell carcinoma (when I had), but my treatment focused on radiating my throat.

    Best,

    Mick
  • carrie2010
    carrie2010 Member Posts: 8
    #6
    micktissue said:

    Carrie
    When you say the Drs "found melanoma in my head," where, exactly, did they find it?

    Depending on where it is and where they decide to radiate, this might be the best site for you. Melanoma is just another form of squamous cell carcinoma (when I had), but my treatment focused on radiating my throat.

    Best,

    Mick

    Mick
    mine was found on my left proctipitol (spelled wrong)lobe (behind my ear an inch or so over.)That is also the are that I will be getting radiation , not sure what type yet though. All the radiologist told me was the side effects are very mild. Carrie
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #7
    carrie2010 said:

    Dave
    Thank you for the reply. The Doctors found melanoma in my head with a piece of lymph node in it. They did the sentinel biopsy of the lymph nodes and everything came back clear. There doing 4 weeks of high dose in interferon A , then 5 weeks of on sight radiation of the head and then 11 months of low dose interferon A. Did I post in the wrong spot for this type of cancer? How long have you been cancer free now if you don't mind my asking? I will pray for you and your family as well and thank you.

    Side Effects
    Carrie,

    I can't speak for your particular type of chemo, mine was similar to Fire34 in a lot of ways and scdeuling.

    I had nine weeks of Cisplaten, Taxotere and 5FU, the seven weeks of concurrent Carboplaten and 35 daily rads....and if you haven't read it already, "Everyone reacts differently".... I think a lot depends on other factors, your age, health and weight going in to treatment, etc...

    That being said though, my chemo doctor was awesome. She told me upfront that any symptom, reaction, etc...that I had from the chemo or treatments in general, that she had something for it...and she always did.

    Emend is great for the large doses of chemo, I would take those on each of the first three days of the multi-chemo days, never got sick at all. Pricey though, the Emend is something like $100 plus/pill.

    I also could do most anything and everything during treatment until maybe the latter part of the concurrent chemo/rads. I think that was more related to not eating much of anything other than Ensure Plus and water.

    I'd get fatigued easily then, so I rested a lot, or would do small things yard work and rest frequently.

    Other than that period, I did my own yard work and maintenance. Took the boat out fishing, day trips to the treatemtns..most anything actually.

    Also, very important to me was attitude...it must be positive. Surround yourself with positive people and stories. If someone came up to me and wanted tot ell me of their family or friends. i'd ask them upfront if it was positive, ending well. If it didn't end positive, I didn't want to hear it at that time.

    I only wanted positive thoughts and energy. Surrond yourself wit positive "Faith, Family and Friends.

    But again, you'll know what your limits are once you get into the routine of treatment.

    Good Luck, and God Bless
    John
  • Scambuster
    Scambuster Member Posts: 973
    #8
    MCP ?
    Hi Carrie,

    I just posted earlier for someone who had Melanoma. Just to tell you that there are some good studies on MCP (Modified Citrus Pectin) as shown to effectively reduce metastasis with Melanoma. Too much info for here so please google it. There are many sites covering it. Worth a look.

    It comes in a powder form from high end Health food / vitamin outlets. I take 2 teaspoons a day in a shake. I couldn't take it for ages after treatment because it burned (like most things) but now I can take it. You may check with a good Natural therapist for dosage. Note, your Doctors will most likely a) have never heard of it and/or b) tell you it's hogwash.

    Note to self, Chemo $3000/dose x 8 = $24,000. MCP + $80 /500g container, teaspoon 50 cents, shaker bottle - $3.00.

    Hope you find it useful.

    Scambuster

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