Remission Questions

_mollyshan
_mollyshan Member Posts: 2
edited July 2012 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hi Everyone!

I'm new to this site so here's my story first..
I'm 23 years old
I had Diffused B-Cell NHL in my chest in January. Did 6 rounds of R-CHOP and now I am 12 weeks out and considered to be in complete remission.

I have felt totally fine but the past two weeks Ive had a lot of pain in my jaw and armpits and also have felt out of breath.

Also, I saw my PCP for a routine physical and when I got my bloodwork report mailed to me it says my WBC and lymphocyte counts were low. Ive tried to call her but she hasn't gotten back to me yet.

Does anyone have any info or experience with any of these problems?

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #2
    Welcome

    Hi Molly !

    I had a different strain of lymphomia than you had (a form of Hodgkin's), and took a different chemo combination (r-abvd), but I can make a few observations that are undoubtedly common to both meds. First, 12 weeks is not a lot of time for chemo side-effects to clear. I still have numb hands and feet (neuropathy), and shortness of breath, two-and-a-half years after ending therapy. Also, I am still tired most of the time, despite complete remission the whole time. I have had friends who went through severe treatments that involved heavy chemo and surgery, and they remained fatigued for the rest of their lives.

    My largerst tumors were axial (armpit), and the areas under both armpits still today feel sore, and even swollen, much of the time. However, I have never felt any type of mass or lump, and neither have any of my oncology providers. The doc has told me that it is just one of the oddities of chemo. Short of feeling a lump, I suspect that it is a side-effect. My doc has always stressed that if I do feel a lump anywhere to call immediately, however.

    Were you on neulasta for WBC ? If you were, and ended it since, the counts may just be trying to find a new balance, but I would continue to call until the doctor commented on it. It is easy to get lost in the paper shuffle after treatment ends, and you must demand responses from your doctors.

    I hope all proves to be well for you. I am sure members who have used chop will respond as well.

    max

    .
  • _mollyshan
    _mollyshan Member Posts: 2
    #3
    Max Former Hodgkins Stage 3 said:

    Welcome

    Hi Molly !

    I had a different strain of lymphomia than you had (a form of Hodgkin's), and took a different chemo combination (r-abvd), but I can make a few observations that are undoubtedly common to both meds. First, 12 weeks is not a lot of time for chemo side-effects to clear. I still have numb hands and feet (neuropathy), and shortness of breath, two-and-a-half years after ending therapy. Also, I am still tired most of the time, despite complete remission the whole time. I have had friends who went through severe treatments that involved heavy chemo and surgery, and they remained fatigued for the rest of their lives.

    My largerst tumors were axial (armpit), and the areas under both armpits still today feel sore, and even swollen, much of the time. However, I have never felt any type of mass or lump, and neither have any of my oncology providers. The doc has told me that it is just one of the oddities of chemo. Short of feeling a lump, I suspect that it is a side-effect. My doc has always stressed that if I do feel a lump anywhere to call immediately, however.

    Were you on neulasta for WBC ? If you were, and ended it since, the counts may just be trying to find a new balance, but I would continue to call until the doctor commented on it. It is easy to get lost in the paper shuffle after treatment ends, and you must demand responses from your doctors.

    I hope all proves to be well for you. I am sure members who have used chop will respond as well.

    max

    .

    Thanks Max!
    I'm sure they
    Thanks Max!
    I'm sure they are all just side affects of chemo but I can't help worrying, I'm petrified of relapse.
    I was on Neulasta so that definitely makes sense. My one ordered me a CT scan for tomorrow morning just to clear my head.
    Thanks for your input :)

    Molly
  • jimwins
    jimwins Member Posts: 2,107
    #4
    Welcome Molly
    Hi Molly and welcome to this site.
    I'm so sorry you've had to deal with cancer - especialy at such a young age.

    I had Diffuse Large B Cell Lymphoma with primary in the small intestine
    and mesentery area. I had 6 rounds of R-EPOCH which is similar to the RCHOP.
    My treatment was interrupted with a surgery after the first cycle where a
    small secton of my small intestine was removed. After recovery, I resumed
    the remaining treatments and I am currently in remission.

    I have not had the issues with pain you are discussing. The pain I usually
    experienced was after the neulasta shots - it normally lasted from 3-5 days.
    My bones ached - primarily my lower back/hip that radiated to my sternum.

    I agree with Max in that you haven't been out from chemo very long so you
    are probably still having some side effects from that. I still have issues
    with fatigue and "chemobrain" and it' been about 8 months for me.

    Your symptoms sound similar to some I've heard with people who had reactions
    to Rituxan but you are not in treatment now so not sure why that would be
    happening now.

    My suggestion is to contact your oncologist/team about these issues.
    Your body is telling you something isn't right so it's best to get it
    checked out.

    I hope you get to feeling better and you will find wonderful caring and
    supportive folks on this site. Please let us know how it's going and what
    you find out.

    Hugs and positive thoughts,

    Jim
    DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)

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