Port Removal Delay and Other Stuff

PeprmntPat55
PeprmntPat55 Member Posts: 70 Member
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Well, I was scheduled to have my port removed on 3/15, however I caught a nasty little virus from my 7 week old baby grand and ended up with pnuemonia.  I was sick for over three weeks and running a low grade fever for the entire time. The port removal can wait but honestly my frustration at getting sick so easily and not only not being able to shake it off but getting worse and missing so much time from work. 

And please understand, I am not (really) complaining but I am so completely frustrated with my body. My primary care doc told me (in his opinion) that my immune system is still crapped out (my words not his) from chemo and two years of Rituxan maintenance. Is this true? He said that Rituxan is an immune suppressant and it will take me a long time to build my body back up. Good Lord, am I really that dense that I didn't understand that?  Is this true? If so, couldn't someone (my onco maybe?) had mentioned to me, Oh BTW, be careful??

I appreciate the wisdom and encouragement I've been able to glean from this board but I am often hesitant to post a question. I live alone and sometimes it's hard for me to really get a grasp on what's happening in my body. 

I really, really wish I knew what I could do to build my body back up to health. Everything I read says eat your fruits and vegetables, get plenty of sleep and exercise. Hello? I've been doing that for most of my life. There has to be more!

 

Thanks in advance for your input, 

Pat

Comments

  • PBL
    PBL Member Posts: 369 Member
    #2
    Yup!

    First things first: Congratulations on being a grandmother!

    ... And sorry you are still getting sick so easily.

    But that's what Rituximab does - it remains in your system for a long time and keeps targeting CD20+ cells (so, your infection-fighting white blood cells, among which can be found the cancerous traitors...), which is how it can afford you a longer remission than chemotherapy alone, but also why you remain prone to all sorts of viruses and bacteria...

    You are not the only one who was not told this in so many words, I'm afraid - but you eventually learn about it as you get unreasonably sick from a chance encounter with any bug. Maybe your blood panels gave some hints that such would be your case; I know my gammaglobulins have remained on the low side since R-CHOP and Rituximab maintenance.

    Better health to you (with proper prophylaxis ;-)).

    PBL

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    #3
    I am similar

    And on my second relapse and have constant infections. Have had a sinus infection serious enough to be hospitalized for since May last year. Pneumonia twice. I have decided to “die wiih my boots on” so I force myself to be active. Relaxing more and avoiding overexertion would probably be a much wiser course, something my wife constantly tells me. Perhaps there is a middle ground. But above all I recommend avoiding crowds  and restaurants. Never touch a restaurant salt shaker or ketchup bottle!

  • PeprmntPat55
    PeprmntPat55 Member Posts: 70 Member
    #4
    ShadyGuy said:

    I am similar

    And on my second relapse and have constant infections. Have had a sinus infection serious enough to be hospitalized for since May last year. Pneumonia twice. I have decided to “die wiih my boots on” so I force myself to be active. Relaxing more and avoiding overexertion would probably be a much wiser course, something my wife constantly tells me. Perhaps there is a middle ground. But above all I recommend avoiding crowds  and restaurants. Never touch a restaurant salt shaker or ketchup bottle!

    Yes I saw that

    in another post you started and honestly felt a tad guilty for putting this out there. I'm so sorry you seem to have the worst of this crap. I never realized how nasty pnuemonia is. Ugh! Thanks for the helpful hints. I bought a new box of masks and am determined to were in public places where, god forbid, I might possibly pick up another bug and yes, when I am around my Baby Grands. Love them so much but they are germy little things!

  • PeprmntPat55
    PeprmntPat55 Member Posts: 70 Member
    #5
    PBL said:

    Yup!

    First things first: Congratulations on being a grandmother!

    ... And sorry you are still getting sick so easily.

    But that's what Rituximab does - it remains in your system for a long time and keeps targeting CD20+ cells (so, your infection-fighting white blood cells, among which can be found the cancerous traitors...), which is how it can afford you a longer remission than chemotherapy alone, but also why you remain prone to all sorts of viruses and bacteria...

    You are not the only one who was not told this in so many words, I'm afraid - but you eventually learn about it as you get unreasonably sick from a chance encounter with any bug. Maybe your blood panels gave some hints that such would be your case; I know my gammaglobulins have remained on the low side since R-CHOP and Rituximab maintenance.

    Better health to you (with proper prophylaxis ;-)).

    PBL

    Thanks for the congrats! This

    Thanks for the congrats! This is not my first grandbaby although he is the youngest. My grands range from 29 years to 3 months!  5 boys and 5 girls. God is good. I just need to stay well :-)

  • po18guy
    po18guy Member Posts: 1,508 Member
    #6
    Maybe...

    I really, really wish I knew what I could do to build my body back up to health. Everything I read says eat your fruits and vegetables, get plenty of sleep and exercise. Hello? I've been doing that for most of my life. There has to be more!

    Just maybe this is why you have persevered so long and so well. We may see it more from outside than you do from the inside. And, even though grandchildren are Petri dishes with legs, ya' gotta love them! If our lives were ironic before, they seem to be ironic 2.0 in the post-treatment realm. The truly odd thing is that, through seven years of constant lymphoma treatment, not a single cold, flu, sneeze or sniffle! This includes primary therapy when I was an emergency responder, visiting emergency rooms, hospitals and jails! Then came transplant...

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    #7
    po18guy said:

    Maybe...

    I really, really wish I knew what I could do to build my body back up to health. Everything I read says eat your fruits and vegetables, get plenty of sleep and exercise. Hello? I've been doing that for most of my life. There has to be more!

    Just maybe this is why you have persevered so long and so well. We may see it more from outside than you do from the inside. And, even though grandchildren are Petri dishes with legs, ya' gotta love them! If our lives were ironic before, they seem to be ironic 2.0 in the post-treatment realm. The truly odd thing is that, through seven years of constant lymphoma treatment, not a single cold, flu, sneeze or sniffle! This includes primary therapy when I was an emergency responder, visiting emergency rooms, hospitals and jails! Then came transplant...

    ??????

    Feed the patient feed the cancer?

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #8
    ShadyGuy said:

    ??????

    Feed the patient feed the cancer?

    Good with the Bad

    Peppermint, I'm glad that you're essentially safe as regards the disease, but sorry about your prolonged weakness.

    Since you are already doing all of the "right things," I have nothing to suggest, except to keep doing them.  I don't think anyone has anything of use they can add, actually.  I have oft-repeated how weak my assortment of sicknesses have left me, but just for the sake of discussion, and to show how different long-term effects of treatment often are, I will mention that before treatment, during the six months of R-ABVD, and for the nine years since, I have had almost no colds, no flu, and no clinical sickness than I can recall. I do get a flu shot annually, and have had the pneumonia vaccine and 5-year boosters.  I was never particularly careful during treatment: I never wore "the mask," didn't stop going to church every week, and a few other social activities, despite sleeping most of the day most days.  I later had the second cancer of prostate, with surgical removal, but that is not in any direct way related to the immune system.  My charts are all marked "Autoimmune Compromised," but I guess that is just a pro-forma thing for people with a blood cancer medical history.


    We are not far apart in age, and that drags one down  -- even people otherwise fully healthy.  Even Mick Jagger can't prance like a Peacock now that he is in his mid-70s (he still prances and jumps, but no longer like a Gazelle).  Profound arthritis from getting crushed by the automobile is very likely part of my lack of vitality.  Do not apologize for venting; do so often, if you feel like it.   I hope your sound actions have you feeling better soon,

    max

  • PeprmntPat55
    PeprmntPat55 Member Posts: 70 Member
    #9
    Y'all are the best!

    let me just say again that I appreciate you all.  I'm trying to do my best here and yes, age is a factor. (I mean, is it possible that I've actually been researching Medicare?? How did this happen???)  

    So I found a silver lining in all this. I used to have bi monthly migraines. Post chemo I have zero. Zero! The drugs must have killed something that was causing them, I don't know but I'm gonna be thankful for that and for every day that I live in spite of my weakness and so forth. Also, I am still working my full time job, so there's that.  Thanks to you all for being a blessing to me :-)

Discussion Boards