Couple of questions about hodgkins lymphoma

FormerMember
FormerMember
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So about 2 months ago I've been diagnosed with hodgkins lymphoma stage 3 with spleen involvment ( IPS 2, male, leukocytosis)and I've already had 4 treatments of abvd (2 cycles) and the internim pet is coming and i've got a couple of questions.

I think I'm going nuts, before treatments I was afraid of the side effects and now I'm going insane because I didn't have any side effects at all besides a bit of hair loss (I still have alot of hair), I don't feel tired or weak and have no nausea or vomiting (that makes sense because im getting anti-nausea drugs), I didn't get neutropenic  even once.

my WBC is about 5.2 - 5.6 10*3/micl 10 days after treatment

Neutrophils are about 1.95 - 2.26 10*3/micl

and I had a blood count today and my platelets and RBC came back higher than when I wasn't sick

platelets - 455  10*3/micl 

RBC - 5.44 10*6/micl

And I had an excisional biopsy of a lymph node in my neck and now when i feel the area and the surrounding area it feels weird and hard, is that scar tissue? is that normal? and what worries my the most before the pet scan is that i still have lump in the right supraclavicular area (near where the biopsy was taken) but now it feels a bit soft, my doctor thinks that it might be fluids from the biopsy, did anyone have that?

Is that normal to feel like the during chemo or have those kind of wbc stats during chemo, I thought that I was supposed to have low neutrophils not normal is it possible that it means that my hodgkins is refractory? 

  • Hi Alex,

    some folk just sail through chemo, with minimal side effects, you may well be one of them!

    nobody on this site can see inside your body to see the results of the chemo, only your scan will do that, and so I’d say; be guided by your team, they are the experts and will be able to guide you.

    as an afterthought, yes, tumours in HL will often leave scar tissue which can feel squashy. 

    Hugs xxx

    Moomy

  • FormerMember
    FormerMember

    Hi Alex,

    i just had my interim scan which was negative Deuville score 2. I have two nodes which remain in my auxilla and chest. So yes you can be negative and still have nodes. Mine that I could feel had reduced and also felt soft. 

    My bloods have always been normal, I was never neutropenic. I think the lowest they dropped to was 1.9 after the first session. I still have hair as well. I do get tired but still go to the gym everyday so I guess it’s all relative. 

    Its literally the worst time, I was beside myself. I was prescribed meds for my anxiety which helped.

    all the best

    Jo

  • FormerMember
    FormerMember

    Hi Alex,

    I'm pleased I read your post, my Daughter is finding her Chemo the same currently, and I have to honest I wondered if it was 'normal'. Wishing you all the best! 

  • FormerMember
    FormerMember

    hey alexzzxx

    I also have been diagnosed with Hodgkins lymphoma round about the same time as you, and I'm having abvd aswel... on Wednesday I will be on my second chemo. I also have that lump underneath the biopsy scar..but I think it is just scar tissue because when I asked my doctor he said it is normal. Im going insane too before treatment because I'm terrified and it is causing me to be quite depressed and unmotivated...

    hope this helped..

    good luck for your next treatment!!

  • FormerMember
    FormerMember

    Yes!!! just got my PET scan results and its negative! seems like it really is a scar tissue in my neck from the biopsy!

    Really happy!

  • Great news!

    hugs xxx

    Moomy

  • FormerMember
    FormerMember in reply to moomy

    I envy those of you who are getting through this with few side effects. I just started chemo August 5th. I expected the first treatment to be relatively easy, with things getting more difficult as I go along. I was wrong, this first week has been tough. I had a lot of fatigue, but that’s improving. The worst part is the body aches and random pains. That reached a peak (I hope) last night. Some of it is all over body aches like with the flu, but I also have various pains that come and go in random places. It’s very strange! Some are sharp pains, usually very brief, but they move all over. Has anyone else experienced that?

  • FormerMember
    FormerMember in reply to FormerMember

    Hi,

    i have AWFUL side effects now you are not alone. The first couple of sessions I was ok but now on treatment 5 I couldn’t leave the house for a week, totally bed bound, constant aches and Pains in my muscles and joints, vertigo, swelling, stomach problems, blurred vision, the list goes on. The fatigue is unreal as well. You are completely not alone, I hope you feel better soon. 

  • I have to say I’m really sorry for those of you having awful side effects, it’s tough but you WILL get through, dogged determination and the knowledge that every other week was perfectly ok got our lass through, she too found the chemo rough, but she’s through it all now....

    bog hugs xxx

    Moomy

  • FormerMember
    FormerMember in reply to moomy

    I’m on day 5, aching all over. Really hoping next week is better!