First Treatment and What can I do this summer???

dcfogar22
dcfogar22 Member Posts: 7
in Head and Neck Cancer #1
Hey everyone,

I just had my first Chemo treatment this week (Friday May 25) So far so good, no nausea or fatigue yet. The only side affect I really felt was on day 3, some intense joint pain in my knees, ankels, hips, lowerback, elbows wrists, and neck (all joints). It was a soreness like it was stiff to move but after walking in and around the house they felt a little bit better. Not sure what treatemnt this is from I had erbitux, taxol, cisplatin? I Just tried to sleep it off but still feel sore today (day 4). I remember them telling me that what ever was going to boost my white blood cells would cause bone pain. Any ideas, is this normal? does this feeling last long? Whats next? My next treatment of erbitux is friday and of all three is in three weeks.

Also, any advice for summer activities? I dont know how long I can sit in the air and watch tv/read while I feel fine basically. Can I sit outside in the heat? What temps? Can i lay in the pool if I am well layered in sunscreen? How long? My family is all about summer sports, being outdoors and while they are here for me sitting in I feel bad cause its sunny, hot and bbq weather. So any advice/ideas would be great!

Thanks!

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    I've only had Cisplatin...
    and that doesn't make joints ache, so it has to be one of the other two causing that. My Oncologist told me for the shot that boosts white blood cells, to use Clariton...it may work for joint aches caused by chemo, too.

    My oncologist also told me to avoid the sun...to wear a big hat, and use high SPF lotion even under long sleeves and pants if I'm outside...he said that Cisplatin causes hyper-sensitivity to uv rays...so sure, you can go outside, you just have to protect yourself :).

    p
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #3
    Enjoy your summer
    Hi dcfogar22,

    Ii too had Erbitux, first loading dose on January 12, 2012. Now 9 ½ weeks post treatment, with almost all side effects gone. I use to feel nauseated after treatments (and tired) and nauseated off and on throughout the day. Nothing very serious, very livable. The rash and pimples the Erbitux gave me were like a trip back to being a teenager. I never itched as bad as it looked, I hardly noticed. As the treatments continued (including radiation) the doctors were always giving me creams and ointments, which helped.

    For me, since I had radiation I do have to use sunscreen and be careful. Not a big deal as I was using sunscreen before treatments.

    As for joint pain and pain in general, you don’t have to suffer; there are a lot of remedies and activities which help. Today, I don’t take anything other then Ibuprofen for pain.

    Be strong, your not alone.

    Enjoy your summer,

    Matt
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #4
    CivilMatt said:

    Enjoy your summer
    Hi dcfogar22,

    Ii too had Erbitux, first loading dose on January 12, 2012. Now 9 ½ weeks post treatment, with almost all side effects gone. I use to feel nauseated after treatments (and tired) and nauseated off and on throughout the day. Nothing very serious, very livable. The rash and pimples the Erbitux gave me were like a trip back to being a teenager. I never itched as bad as it looked, I hardly noticed. As the treatments continued (including radiation) the doctors were always giving me creams and ointments, which helped.

    For me, since I had radiation I do have to use sunscreen and be careful. Not a big deal as I was using sunscreen before treatments.

    As for joint pain and pain in general, you don’t have to suffer; there are a lot of remedies and activities which help. Today, I don’t take anything other then Ibuprofen for pain.

    Be strong, your not alone.

    Enjoy your summer,

    Matt

    Hi Dcfogar...
    ...well I am 4 months post treatments for base of tongue stage III ...I only had radiation and Erbitux, nothing else ....and my joints hurt pretty bad lately (they did not start hurting still some time after treatments, I'd say 3.5 months....so this could certainly be a side affect delayed (in me at least). My hips give me the most trouble but the pain is not severe, I'd say level 4-5 on the worst day ....but certainly very stiff ..same with the elbows ...one day level 4-5 then the next day gone??

    As for summer activities ....wish I could help....my suggestion would be do everthing you can until you can't but run everything by your doctor that you may want to do and see what he/she says. Living and doing is better therapy than sitting around dreading treatments...and at some point if you are the norm, you will not be feeling well from the treatments and that will take care of the desire to "go out and do things" ....lol.

    Def wear sunscreen....and cover up if you go out.

    I live in Idaho at 5500 feet elevation ...so it's no humid here but you can get burned quickly if you are not careful.

    Best to you Dcfogar ....keep us posted.


    Tim
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #5
    your soreness sounds like you got neulasta
    to salvage bone marrow. if you got it, it was given by injection the day after chemo. Sun exposure for any lengthof time is really a no-no for you. sorry. Sit in the shade, or wear long sleeves and a floppy hat in the pool, but don't risk exposing skin. It just isn't worth it. Now, heat exposure is a different thing. Whatever you tolerate is fine. This therapy will put a crimp in your summer plans, but then, when you are cured of your disease, you can go enjoy all of your activities again.

    Pat
  • NitaNita
    NitaNita Member Posts: 56
    #6
    I have a question
    I was just diagnosed with SCC on the left side of my tongue which I have to have surgery to have it removed. They said I have to have 1/4 in deep and about two quarter legnths taken off and then a partial neck dissection to have about 20 lymphnodes taken out to check for cancer. What did they do for you if you don't mind me asking.
  • dcfogar22
    dcfogar22 Member Posts: 7
    #7
    NitaNita said:

    I have a question
    I was just diagnosed with SCC on the left side of my tongue which I have to have surgery to have it removed. They said I have to have 1/4 in deep and about two quarter legnths taken off and then a partial neck dissection to have about 20 lymphnodes taken out to check for cancer. What did they do for you if you don't mind me asking.

    My treatment plan
    As I have read on many posts everyone is different, but I have no problem sharing what my team of doctors are preparing for me. My SCC is on the right side, there are some sucpicious lymphnodes but nothing positive. My doctors had talked about surgery first to remove it and then I would do chemo/rads but after my PET they decided that I qualified for a study drug that could possibly shrink the tumbor to 50% and they put surgery on the back burner. So my plan is 6 weeks chemo (2/21 day cylces of erbitux, taxol, cisplatin)and then 10 weeks of chemo/rads combo inpatient 5 days then home 9 days (for 10 weeks). So yes my plan seems long but for me they will not do surgery unless this plan dosent pan out. I really didnt have a preference I just voiced that I wanted the best treatment and I did worry about what the quality of life would be like after this is over. These were my concerns. Here is an article about a chef here in chicago who my treatment most resembles:Subject: Cancer Patient Stories: Combination Therapy Saves Chef's Tongue from Cancer - The University of Chicago Medicine

    http://www.uchospitals.edu/specialties/cancer/patient-stories/grant-achatz.html

    Let me know if you have any questions! Inbox me for anything if you want to!
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #8
    dcfogar22 said:

    My treatment plan
    As I have read on many posts everyone is different, but I have no problem sharing what my team of doctors are preparing for me. My SCC is on the right side, there are some sucpicious lymphnodes but nothing positive. My doctors had talked about surgery first to remove it and then I would do chemo/rads but after my PET they decided that I qualified for a study drug that could possibly shrink the tumbor to 50% and they put surgery on the back burner. So my plan is 6 weeks chemo (2/21 day cylces of erbitux, taxol, cisplatin)and then 10 weeks of chemo/rads combo inpatient 5 days then home 9 days (for 10 weeks). So yes my plan seems long but for me they will not do surgery unless this plan dosent pan out. I really didnt have a preference I just voiced that I wanted the best treatment and I did worry about what the quality of life would be like after this is over. These were my concerns. Here is an article about a chef here in chicago who my treatment most resembles:Subject: Cancer Patient Stories: Combination Therapy Saves Chef's Tongue from Cancer - The University of Chicago Medicine

    http://www.uchospitals.edu/specialties/cancer/patient-stories/grant-achatz.html

    Let me know if you have any questions! Inbox me for anything if you want to!

    Hi again dcforar..
    Let me know how your treatments / post stuff goes...I too did not have surgery only radiation and Erbitux ..but not the platinum chemo drugs.... ( I was never really given the option or doctors never discussed surgery ..only afterwards did I question that to some concern) ...

    ..but longtermsurvior (Pat) and others (Eric Statler on the OCF board) have made me feel better about what treatments I did get ..and I have had 1 "clear" PET / CT scan which was my first after treatments ..so, so far so good....I just always wondered about not having the suregery or especially those platninum chemo drugs... :)

    Now I'm interested in your path ...hope you don't mind keeping me posted.

    btw...dx October 21 with base of tongue SCC HPV + with one lymph node affected / stage III.
    PET / CT scan May 7th and scope / finger exam May 10th both Onc and ENT said all looked "very good" and were pleased. :)

    Tim
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #9
    Welcome...
    Your treatment sounds a lot like mine and a few others on here, though a bit shortened.

    I was STGIII Tonsils and a lymphnode HPV+... Tonsils came out first, power port installed, then nine weeks (three week cycles) of Cisplatin, Taxotere and 5FU (through the port).

    The joint, bone pain you feel is definitely from Neulasta or similar. The injection you got to help regenerate blood cell counts.

    Possibly some good news for you on that.. Even though I got the injection after each big round of chemo, I only had that joint pain after the initial dose of Neulasta, maybe you will also.

    I then had seven weeks of concurrent chemo/rads..each week Carboplatin and 35 daily rads sessions.

    I ended treatment (January - June 2009) during the early summer.

    For me, I took neighbor hood walks, bike rides, fishing in my boat...all when I felt well, which was most of the time.

    You do need to protect yourself from the sun during treatment and after. But not completely covered, mainly common sense, your MD's can cover that with you.

    A big thing during treatment is to stay very well hydrated, I can't stress that one enough.

    Best,
    John

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