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rituxan and 'chemo brain'

Discussion in 'Rituximab: News and Research' started by dsdmom, Feb 25, 2013.

  1. dsdmom

    dsdmom Senior Member

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    Wondering if anybody else on rituxan is experiencing chemo brain symptoms...difficulty with memory, particularly short term, word recall, saying the wrong word and some reading issues? Feel free to pm me if you'd rather reply thatway . Thanks...
  2. Jacque

    Jacque Senior Member

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    Wow..... that makes me a little less or more worried!!! I am most DEFINATELY dealing with chemo brain which i had no idea there was such a thing!! I have been REALLY REALLY worried lately because I just feel like I am slipping and my brain is basically just turned off... I am never on this site any more bc I can't think to read the articles posted. It is as if I have no comprehension of anything... Brain fog has always been a constant...but this is so far beyond that!! The other day I was sitting at a stop light and I had to really "think" if the GREEN light meant GO! I have seriously thought lately that if this gets any worse - I would wonder if I have the beginning of Alzheimers. It is scaring the crap out of me! I am still no better from the Rituxan so we are going to add Valcyte to the mix. I have now had 4 infusions. I do have somewhat less flu like symptoms but I had spells of that before starting the Rituxan. Beyond Frustrated. Thank you for the post tho it at least gives me an explanation. Thanks.
  3. Jacque

    Jacque Senior Member

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    Oh and yes I am having all of the difficulties you described as well!!!
  4. Enid

    Enid Senior Member

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    Just to add (I don't know anything about Rituxan) and know the symptoms you describe as very much part of a phase in ME. I had similar worries about Alzheimers etc. but persistance with the various ME supps and some general health improvement seem to have reversed cognitive problems considerably. All I suggest is don't worry - some time ago I was unable to write even this.
    merylg and heapsreal like this.
  5. beaker

    beaker CFS/ME 1986

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    A one person antidote :
    An 85+ family member is on Rituxan for lymphoma. They have been since last September. No chemo brain. And they have some other heavy hitting chemo drugs in combination.
    Rituximab is a biological, not considered a typical chemo. We specifically asked oncologist about that stuff considering the person's age.
    I have not heard of any RA patients getting that ( I have been talking to my rheumy about it)
    Maybe you could check an RA forum ?
    My intent is not to scare you or upset you. Apologies if it has. But I thought you would want more information.
    I am wondering if this is may be a ME/CFS thing.
    I would be very interested to hear what your treating physician(s) have to say about it.

    Something I have not seen anyone w/ ME/CFS post about their rituxan experience. Do you only take Benadryl on infusion days ? or do you take it every day ongoing ?
    Enid likes this.
  6. dsdmom

    dsdmom Senior Member

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    This sort of confusion has been part of my illness in the past but has improved w/ time and b12 shots. It got worse when I was put on lyrica in the last few months but I came off that and saw improvement again. Lately it was really bothering me but seems to wax & wane. From what I've read & others I've talked to "chemo brain" is very real and has also been associated w/ rituxan so I guess it's possible. I'm also at a point where I think my ritux is wearing off (need another infusion) so maybe that's why it was getting worse?
    ukxmrv likes this.
  7. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    I'll echo all of that. RTX is not known for causing chemo brain in the very large numbers of cancer Pts worldwide, nor in ITP patients. If there is something peculiar that happens in CFS patients, I don't know but there is probably not enough experience yet with CFS patients to say if it is a rare reaction.

    It's only for the infusion reaction. As B-cells get lysed and spill their contents (some of those contents being signaling chemicals), mast cells get signaled to degranulate their histamine. Also, the number of B-cells gets lower and lower with each infusion, so the first would typically give the worst reactions. OTOH, if any particular person has rash or other symptoms, then it's probably worth a try to keep taking the anti-histamine. Then again, a tolerance is quickly built up anyway.
    beaker likes this.
  8. beaker

    beaker CFS/ME 1986

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    Lymphoma protocol they have family member on small dose Benadryl BID. ( larger IV amt. infusion day along w/ dexamethasone) Dr. is fond of saying drug still working in system long after infusion. Not sure of specific reason.
    FWIW -Family member has had hardly any SEs on this med. Nothing like the ME/CFS persons blogging or posting about being on it. Wondering what the differences in protocol might make a difference or if it is just the disease specific reaction ?
    Sherlock likes this.
  9. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    What I saw being used those 5 years ago was IV Benadryl, and oral Tylenol. No dex at all, although dex has some small amount of cytotoxicity and is otherwise used as an anti-inflammatory with regular chemo drug regimens (like CVAD).

    Yes, you are right, it is soooo mild a drug. And CFS gets a lower dose anyway, IIRC. For lymphoma it was 375mg/m2

    The unused antibodies last for months in circulation, just like any other antibodies, until taken up by the reticular endothelial system. Not cleared by liver or kidneys, as with a usual drug. That's why Mella & Fluge thought that the benefit came from suppressing autoantibodies: although the B cells get killed off right away, but you still have to wait for the antibodies (and plasma cells) to dwindle away over months. The onset of action in their subjects took months.

    My personal belief is that RTX affects the B-cell signalling in CFS and that is its main effect in CFS - when it happens. Also, what generally gets forgotten is Mella & Fluges' statement that their first, serendipitous patients had a quick onset of action, unlike their actual study patients - which argues against autoantibodies.
    .
    beaker likes this.
  10. beaker

    beaker CFS/ME 1986

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    I got sick after cooking and eating dinner for friends. They got sick too. Another friend was there, who didn't eat. They didn't get sick. Was it something in the food ? Was it something I picked up and passed on through cooking ? ( I had been up to Tahoe skiing a week or two or so prior. Oh and almost forgot. Person at work(small office) sick and couple others w/family members sick)
    There is absolutely no way I can believe there isn't some type of infectious agent-- either as trigger of another dormant agent or in and of itself. Whether or not that agent kicks in some long term type auto immune response I don't know. Or effects signaling per your post. Or
    There is also the theory that infectious agent lives in B cells. The delay ? Lots to kill off and system to turn around and be in "normal" functional mode again.

    < giant sigh> It's all a mystery. At this point, I care less and less about the what and why. Only how. How to get better -- to any significant degree. Of course, that's been the point all along........... so many many many freaking years.

    ETA apologies dsdmom for getting away from your original question.
    I wanted to just add that maybe going and looking at the other protocols and the prophylactics used ( like the ongoing benadryl dosing) might help you with your side effects...... If they are somehow from the drug or reaction to the drug. ( even if it is a response specific to the med only w/ ME/CFS ) Something to ask your treating physician.
    Sherlock likes this.
  11. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Hi, Beaker. In my case, I think it's more autoinflammatory than autoimmune - along with an ordinary virus that flares it all up from time to time... and an ordinary virus that started it all.

    I agree with you completely about how it is only the outcomes that matter. Which is pretty much in the end what your signature means, if I read you correctly. All the talk about pathways and mechanisms and enzymes and everything can be interesting sometimes, but usually ends up just being so much wheel-spinning. That's how we end up with so many different theories and treatment plans. If only the theories were accompanied with words like "maybe" and "possibly" instead of "my theory conquers the world!!" :)

    As far as infusion reactions: having some reaction from an infusion at least means it's doing something. The worst result might be having no reaction at all. I remember one lymphoma patient undergoing Velcade and having terrible gut pain daily for weeks, wanting to quit it. I kept telling him to stick with it because that meant his gut lymphoid tissue was being killed off, proving the drug was working. He did stick with it and then was the one who had a complete remission.
    beaker likes this.
  12. Jacque

    Jacque Senior Member

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    Well here it is 4 am and instead of sleeping I am up reading all of your wonderful posts... Quite honestly I am not on the PR site much any more because of these scarey cognitive issues I am having. I realize that CRS just kinda goes with the territory...I have been dealing with this crap for over 35 years...but this is above and beyond my normal CRS (can't remember S...tuff) haha had you goin! So it is either the Rituxan or I am just really declining rapidly in the brain department. I can't seem to be able to read much of anything anymore and my retention is really horrid. So who knows...

    And in regard to causes...I maintain that my illness came from that nasty little tick crawling in my ear and stealing my life when I was about 12 years old. Those ticks carry viruses too so who knows if it was the Borrelia or a virus at the time of the bite..or the viruses able to take over once the Borrelia crushed my immune system?

    We are not adding Valcyte to my treatment with Dr. K.. I have given the Rituxan almost 10 mo now I have been more than patient... All of my symptoms flooding back and feeling quite helpless and hopeless... Not gettin my hopes up for the Valcyte...cuz the let down is such a long way to fall....sigh

    My pain levels have increased since starting Rituxan actually. The only thing that has improved is the orthostatic issues... I rarely feel woozy and out of my body feeling... Damn I kind of miss it... it was the only fun I had at times!
    Appreciate all of you... Jac

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