rituxan treatment

[Bluegillking]

My CLL has caused a condition called warm autoimmune hemolytic anemia and they are wanting to start Rituximab to keep my hgb counts from tanking. I am not a big fan of treatments and have refused treatments several times for other cancers. I am just wondering about your alls experience with this drug and your opinion of it.

[cajunjeff]

Bluegill, I have had hemolytic anemia (AIHA) as a complication of my cll. It took several treatments of steroids, rituximab and other drugs to get my AIHA under control.

Ritixumab is a monoclonal antibody that will also, to some extent, treat your cll, which likely is the underlying cause of your AIHA. After your AIHA gets under control, your doctor may well want to go forward and treat your cll to prevent a recurrence of your AIHA.

Most people tolerate rituxumab very well. I came down with hives on my third infusion and eventually I was switched to a similar monoclonal antibody that I was not allergic to.

My hemoglobin fell below 7 requiring blood transfusions. I don't know if I have ever felt that weak before. If you refuse treatment for your AIHA and your hemoglobin tanks, as mine did, you will be in quite a bind.

My AIHA has remained under control thanks to the continuing cll treatments I have been on the last few years.

I dont think it likely that your AIHA will spontaneously fix itself. I think it more likely it will progress if untreated, and if it gets to the point where mine was, you wont be able to function and might need transfusions to get oxygen to your organs.

But I am not a doctor, and obviously its your doctor you might want to talk to about the consequences and risks of untreated AIHA. Good luck to you. While there are some side effects to treatments for AIHA and our cll, the side effects of untreated AIHA and untreated cll can be way worse, if not eventually fatal.

[craterlake in reply to cajunjeff]

Hi Jeff , i am having my first rituximab infusion next week . what was the other MCL antibody you took ? thanks james .

[lankisterguy Volunteer]

Hi Bluegillking,

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I think cajunjeff provided an excellent answer. AIHA and most other anemias seem to be complicated to diagnose, and as cajunjeff indicates, the treatment can be complicated because CLL has altered our immune system and made it more unpredictable.

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AIHA, especially the warm type has been mentioned in 128 previous postings here:

healthunlocked.com/cllsuppo...

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Len

[HailMary-USA]

My AIHA resolved after just a few months of Calquence monotherapy as my first treatment.

I had deferred treatment for 5 years and opted out of both steroids and BR chemo.

Some type of treatment does eventually become necessary for most of us.

Our disease is as unique as each of us, so only your own doctors can advise what is best for you.

Best wishes from Mary

[Thundercat2]

I agree with Mary that we are all so unique that pin pointing things like anemia is difficult. You don't want to mess with a low Hb number though because that can cause it's own set of problems. Rituxan is very tried and true and I think tolerable for most. Good luck with whatever you decide to do.

[AussieNeil Administrator]

Rituxan/rituximab was approved by the FDA for clinical use in 2006, so we have plenty of history of this life saving immunotherapy. If your haemoglobin drops below 6, you risk organ damage and as it drops below 10, living becomes a struggle as your body's oxygen supply becomes increasingly constrained. Rituxan does come with the disadvantages of preventing new antibody production (no B cells, as it removes these very effectively, stopping the production of new autoimmune antibodies), so it's important to take precautions against infections for at least a year after your last infusion.

Neil

[thb4747]

I’ve had AIHA 3 times and initially treatment was Prednisone (Rituximab wasn’t available). I had a combination of Prednisone in Alaska in 2017 and Rituximab in New Zealand when I was allowed to fly home. This treatment was highly successful. My HGB dropped to 3.4 at one stage and I’m lucky to be alive. My HGB was around 6 when I arrived at the hospital in Anchorage but they wouldn’t listen to me when I said don’t waste your time trying to find a match as I’m aware how difficult that is for me. They ignored me (I guess partly because of US caution about the potential for being sued).

I wouldn’t waste any time as this issue isn’t likely to clear itself any time soon.

I’ve had Rituximab infusions 18 times and only had a problem once (#14 as it happens). There’s something called a “shake and bake” reaction and, for this reason, the infusions start off very slowly and are then cranked up. I spent one night in hospital for observation but that was all.

[Shefflass]

I can only reiterate what's already been said. I've also had AIHA more than once. Initially cleared up by prednisone and then kept under control along with CLL by Ibrutinib. It came back when I had to stop Ibrutinib. I ended up in hospital for daily blood transfusions as hgb kept dipping dangerously low. It didn't resolve on it's own and became worse quite quickly. Fortunately it was put under control again and has remained that way for 3 years. Personally, I certainly wouldn't mess with AIHA and the treatments for it are tried, tested and well tolerated. I've also had a few rounds of Rituximab over the years and usually have a 'shake and bake' reaction to the first infusion but it's easily managed by the day case team by infusing slowly etc. It's definitely preferable to the effects of ongoing AIHA!

[LeoPa]

Wow you refused treatment several times for other cancers and you are still here? Please do tell the story as it must be a remarkable one.

[cajunjeff in reply to LeoPa]

I was curious too, but there are no replies from original poster. I guess he didn’t find any of our replies helpful. I hope he doesn’t go the no treatment route with AIHA. I thought it was killing me when I had it. It’s the weakest I’ve ever been.

Many cancer treatments are harsh. In a relative sense, I think treatments for Cll are less harsh, in general, than treatments for other cancers. I sure wish I could have avoided treatment for my AIHA and my Cll. Recalling how ill I was with my AIHA, I doubt I would have survived without treatments to restore my hemoglobin.

[Bluegillking in reply to LeoPa]

In 2016 I had a massive melanoma tumor removed from my face. They removed the tumor, left side lymph nodes and salivary glands on the left side. Two months later they did some surgery to remove excess scar tissue, lift my eyebrow and add a gold weight to my eyelid so it would close completely. The entire side of my face is permanently numb but I don't have any permanent droop. This droop was a possibility if they had to cut the main nerve going through my face which thankfully they didn't have to do. It was during this surgery that they found the CLL. Along about this time Keytruda was starting to make itself known due to Jimmy Carter treatments and they offered this to me. They said you just had the mother ship taken off your face and even though you are not showing any melanoma in your body we are sure there is some floating around in there and we want to use the keytruda to treat it. I refused. I can't see subjecting your body to such extreme risk for something that "might" be there. I continue seeing doctors for checkups and scans for melanoma and any progression of the CLL. My melanoma was in check and the only thing my CLL was showing was abnormal blood work and some night sweats but this doctor wanted to put me on B and R. Again I refused as my numbers were not that bad and I was having no symptoms. I did find another doctor because he was no longer effective after I refused treatment. Along comes 2020 and my melanoma decides to flare up again. 2 small spots on the left side of my face were going to have to be removed. The surgeon told me they wanted me to do a treatment of Keytruda before surgery just to make sure there wasn't any floating around, again I refused. I figure if it's growing somewhere then have a surgery to remove it. This was MD Anderson and they don't usually have people refuse treatment but you have to remember you are in charge of your health at all times and they should respect that and work with you. I did have the growths removed and 2 weeks later went back to have the skin graft surgery. During this surgery they did find a rare form of melanoma that was growing along the nerves around my eye and I did have to go through radiation to get this taken care of. This is my first issue with the CLL and the actual problems it can cause and it has definitely been a wake up. After reading other people's posts I did realize how fast and how serious this warm hemolytic anemia can be. My doctors today did actually use the term emergency to describe my condition and bottom line is I go in for blood work Monday, transfusion on Tuesday and start treatments on Thursday. Thanks to this site that I understand what is going on by people who have been there.

Prep for Tumor removal

[AussieNeil Administrator in reply to Bluegillking]

Thank you for clarifying what you meant by "and have refused treatments several times for other cancers." You've had quite a health journey! Thank you too for appreciating and accepting community feedback on how important it is to promptly treat AIHA. Please let us know how you go.

Per Wikipedia, you refused adjuvant therapy for your melanoma; en.m.wikipedia.org/wiki/Adj... "Adjuvant therapy, also known as adjunct therapy, adjuvant care, or augmentation therapy, is a therapy that is given in addition to the primary or initial therapy to maximize its effectiveness. The surgeries and complex treatment regimens used in cancer therapy have led the term to be used mainly to describe adjuvant cancer treatments. An example of such adjuvant therapy is the additional treatment[1] usually given after surgery where all detectable disease has been removed, but where there remains a statistical risk of relapse due to the presence of undetected disease."

You correctly pointed out that "you have to remember you are in charge of your health at all times and they should respect that and work with you."

What I've underlined is extremely important, particularly when you have CLL. Ignorance of this has also been used by charlatan Chris Wark/"Chris beat cancer", to sell his alternative treatment to desperate people with cancer. Chris had bowel cancer surgery which a surgeon estimated gave him a better than even chance of surviving and refused recommendations for adjuvant therapy (chemo) that statistically gave him around a further 15% survival advantage. Chris doesn't accept surgery can cure cancer and credits his diet, etc for his survival. There's a YouTube video by someone who monitored his website and proved that Chris removed the testimonials of customers who subsequently died from their cancer, after following Chris's recommendations to cure their cancer.

The reason the understanding of the importance of adjuvant therapy is so very important to us with CLL, is that our survival from secondary cancers is poorer than those who don't have CLL. That's because our T cells can be driven to exhaustion by our CLL and hence can be less effective at detecting and destroying cancer cells: sciencedirect.com/science/a...

I hope you don't have any further cancer scares, but if you do, please discuss your likely odds of survival with and without adjuvant therapy when you have CLL, so that you can make an informed decision.

Neil

[LeoPa in reply to Bluegillking]

Thank you, now I get it. How long did it take for your face melanoma to grow that large? Best of luck with the aiha treatment!

[Bluegillking in reply to LeoPa]

It was about 6 months. I did see a GP about it in early 2016 and he said it looked like an old man growth but to go to a dermatologist to be sure. However I was moving to another state and was between jobs and with no insurance. I was officially diagnosed with melanoma in August and had surgery in early November. It went from pea size to picture size from around April.

[LeoPa in reply to Bluegillking]

Wow, it grew fast.

[Summer1968]

I have CLL and had Hemolytic Anaemia and I was treated with oral Cyclophosphamide and infusions of Rituximabin in 2020, it put me into remission, no side effects from either drugs and although my WBC is climbing again it is of no concern and my haemoglobin is decreasing but at such a slow rate they are not at all worried.I too did not want to go down the chemo road but was absolutely amazed because the exhaustion and fatigue disappeared completely. I had no reason to fear the treatment at all.

[SofiaDeo]

FWIW, I'll mention it might be possible to have the Rituxan as a subcutaneous injection after the initial infusion, if you aren't a huge fan of treatments. If your case happens to be one that is deemed appropriate, there is a subcutaneous form of Rituxan that can be used after the initial infusion. So appointments are a 1 hour visit (subcutaneous injection then waiting around to verify no severe adverse reaction) instead of a 4+ hour visit for an infusion. It's called Rituxan Hycela. The waiting around is very important IMO since it's possible one can have delayed anaphylactic type reactions any time a large molecule is injected into our body.

I did a clinical trial where I had subcutaneous, instead of IV infusion, monoclonal antibody. I never had any of the reactions associated with monoclonal antibody (or other large molecules like immune globulin) infusions.

[Palmetto]

All great advice. My husband has had 3 bouts of AIHA now. He almost waited too long the second time to say anything when he saw his urine getting darker and darker and he started to become very short of breath. I noted over about 3 months his hemoglobins were dropping but oncologist at the time didn't think it was anything but by the time he got the bad symptoms his hemoglobin dropped to below 7. 2 blood transfusions and Rituxin did the job and also kept his CLL in check for another year. Please don't delay!

[SantaZia]

Rituximab worked great for me and did away with my AHIA. I had both warm and cold. I had mild side effects when treatment started sweats. The stop the infusion and added a benzidine and started treatment again. I hope you have already started your treatment.