Search Results for 'procrit side effects'

[Robin Smith]

Hi Terry. I’ve been on weekly Procrit injections (30 units) for almost three years. Retacrit is a bio-similar of Procrit so the two medications are somewhat different, but I suspect close enough that they’d have fairly similar side effects. Just to let you know.. I’ve experienced high resting heart rate and shortness of breath off and on even when my hemoglobin is in the high 9’s. I also have degenerative disk disease so between the MDS, back problems, and the Procrit it’s been extremely challenging to sort out what is causing what! Take good care.. sending best wishes.

[Robin Smith]

Debbie, did you eventually find answers regarding your platelets and blood counts? I’ve had “large” platelets for a while and now my last CBC revealed “giant” platelets. Both my WBC and platelet count (175K/uL) are within the normal range so I’m confused over the change from large to giant and definitely confused as to the significance of that change. Last week I was given my normal Procrit injection of 30 units at the same time I received Evusheld so I’m not sure if this change could be related to that. I did have the worst week of side effects I’ve ever experienced and, of course, spent the entire week contributing it to Procrit completely forgetting that I also got two injections of Evusheld at the same time. In any case, like you I’m sitting here wondering if the change in platelets is a signal of disease progression. Or if the platelet change could be related to the Procrit and/or the Procrit/Evusheld combination. The only thing I’m fairly confident in knowing right now is that giant platelets are, in fact, associated with MDS. Fortunately, I have an appointment scheduled with my oncologist in a couple of weeks and will, hopefully, be able to find some answers. Sincerely hoping you’re much less panicked at this point and doing well. Take good care..

[Robin Smith]

https://www.mds-foundation.org/forums/search/procrit+side+effects/

Linda, Lee Warner describes her husband’s experience with Revlimid in this thread. I’m hoping you find it helpful.

I have no experience with Revlimid. I’m currently struggling with side effects due to Procrit (2 1/2 yrs duration and side effects seem to be increasing in severity while my hemoglobin appears to be trending downward). The above thread about Revlimid popped up in my search. Sending my very best wishes to your husband as he makes this difficult decision. Remember to take care of you too. This is hard.

[Lee Warner]

Hello Nancy,The only lenalidomide I know about is the Merck product, Revlimid (developed by Celgene, and sold to Merck in 2019.)I’m told it is typically used after at least one other protocol failure, such as Procrit – which you experienced. And I understand the typical dose used to be 10 mg – but I’m reading anecdotally and from personal experience that reduced doses can be successful. I don’t know if side effects are greater at the 10 mg dose, than for example the 2.5 mg dose. 
Side effects, I’v learned – from talking with the hematologist and oncologist –  range from mild to severe. Most typical I believe is skin rash or welts, and diarrhea. Apparently there have been clinical trials of Revlimid used for multiple myeloma patients that show increased risk for new cancers -MDS, lymphoma, and AML. I think some research on this maybe here on the MDS site and other places would be a good thing for learning.
Increased risk may be a reason to think about using the lowest dose that produces results. 

I’m a caregiver for my MDS 5q Deletion husband. After Procrit, Revlimid, and Vidaza failures he became transfusion dependent, with transfusions lasting around 14 days, and fewer days leading up to his fifth transfusion. His prior Revlimid failure was a 10 mg dose that produced severe welts from his diaphragm down to his ankles and across the tops of his feet. When Vidaza failed after two years his oncologist recommended 2 mg Revlimid on M W F then 7 days off, instead of the prior attempt at 10 mg. for 21 straight days with 7 days off. The 2 mg is taken with a cocktail of OTC meds to combat the rash. The cocktail is 1 regular Claritin pill, 1 L-Lysine pill, and 2 Pepcids, taken initially every day of the week, then when his slight rash abated, he now takes the cocktail only on M W F with his Revlimid. I know it’s a strange sounding remedy, but it works.
He’s been on this protocol for 11 cycles, with Hgb hovering in the mid-12s until two months ago when it dropped to the high 11s, and has not gone back up. He’s started getting diarrhea which I’m pretty sure is a Revlimid side effect because nothing else in his life has changed. But he’s gone nearly a year without signs or symptoms of new cancers.
If your husband experiences side effects, it might be good to consider with your oncologist a lower dose unless other drugs are recommended by her/him. In our case, MDS 5q, there are no other drugs after Procrit/Retacrit failure and Vidaza failure. If anyone reading here knows of other treatment choices, we’d sure love to know!  This is a debilitating disease that has only one way to go long term, and it appears there is little research to produce new treatment. Luspatercept, one of the newest MDS treatments, is not effective for 5q.
I hope the above is worthwhile information, and wishing you and your husband the best!

[Nancy Byham]

Husband about to start lenalidomide 21 days on 5 off. He just finished 3 months of procrit which sizzled after first month. Are the side effects bad, does or has anyone not tolerated this treatment?
His gene pool alone has aggressive cancers( renal, breast,lung, brain) does this drug trigger other cancers taxing the body with the side effects? So many questions………..so many unknowns

[Nancy Byham]

Spouse has 5q. Diagnosed 8 yrs ago, confirmed 3 yrs. Recently his hemoglobin in March was/has held about 11. Aprildropped to 9, (tried b-12shots) then June dropped to 6.5-7.
I have read everything and normally protocols would be thalidomide, then blood transfusion. Doctor put on procrit-4 weeks in raised .9.
Can anyone come x plain this course of treatment? And doc didn’t explain side effects of procrit. Can be bad as disease. He won’t stop smoking , enlarged heart and cancer is aggressive (renal and breast ) I’m at a loss expecting to find him – however I find him.
Any observations? Answers?

[Kenan White]

Hello – I’ve been approved for the drug and begin next week – I’ve heard of minor side effects but wanted to know what I’m in for … 4 years of Procrit/Zarzio combo and got used to the bone pain and joint aches – any info or helpful hints appreciated

[Lee Warner]

Thank you Stacy and others for this conversation about Revlimid. My husband is age 80 with 5q deletion for the past five years, and initially had a severe reaction to Revlimid.

He was first treated successfully with Procrit injections once each week for two years until Procrit failed, with hemoglobin dipping to 7. Revlimid was Rx’d at 10 mg with severe reaction of welts nearly all over his body, primarily legs and torso, appearing within a few days; Revlimid was terminated of course. Then he was treated with Vidaza infusions five days a week for two years until that also failed and hemoglobin again fell to 7 along with seriously out of range platelets, ANC, MCV and others. And extreme, debilitating fatigue.

After Vidaza failed late in 2021 he had five transfusions, each was two units of RBC. Then his oncologist suggested trying Revlimid at 2.5 mg three times a week — along with a “cocktail” of Pepcid, L-Lysine, and Claritin to combat the rash. CBC levels including hemoglobin and WBC initially dropped but after 8 weeks, CBC readings improved with Hgb at 12. It’s been five months now, with Revlimid Monday, Wednesday, Friday at 2.5 mg, taking the “cocktail” with each Revlimid. Yesterday his hemoglobin was 12.7.

He has side effects, but they’re minimal so far: occasional gut pain, purplish blood spots on the whites of his eyes, rash on his forearms; and fatigue continues- it’s less debilitating than previously. But he is alive – he enjoys family gatherings, going out to visit people, very minor physical activity such as walking a little outside, and he’s always up for driving anyone so long as he can sit in the car.

I think when Revlimid fails, as all these remedies seem eventually to do, he can be sustained on RBC transfusions for some time. How long ? we do not know. Our understanding is that there are no remaining options.

Bottom line on his Revlimid experience: reducing the dose mg, going with three days a week, and combatting the rash can be effective.

If anyone here knows of treatment other than described above, posts about your experience are surely appreciated.

[Bonnie Condon]

I have low risk MDS (diagnosed a year ago) and am currently dealing with Hgb at 8.4 and a low neutrophil count. I have been getting Procrit for 3 months. Just had my 2nd BMB Thursday to determine if something else is happening. I went to Walgreens in Illinois and had to sign a document that I had one of a variety of diseases. Bone marrow cancer was one of them. They didn’t require anything from my doctor, though my Hem Onc was supportive of me getting the 3rd dose.I got my 3rd Moderna vaccination and experienced similar side effects as the 2nd vaccination–aches,headache, nausea and no appetite for about 16 hours.

[Philip Fallacaro]

81 years old developed low risk MDS in 2016. Started procrit injections every two to three weeks about 3 years ago. It was keeping my hemoglobin around 10.5, whites cells near low normal and platelets near low normal. Unexpectedly two years ago I was hospitalized for extreme weakness, weight loss and fatigue and found to have Adrenal Insufficiency (adrenal glands not producing cortisol) requiring modest dosage of 25mg hydrocortisone for cortisol replacement. Was doing ok for a while but tested having high serum iron, high ferritin and high saturation levels, iron detected in my liver, but not causing damage. My platelets dropped from around 120 to 75 +- 10. Concerned about the toxic effects of iron over load, my doctor prescribed chelating pills, Jadenu (deferaserox) to reduce iron absorption. But I cant seem to tolerate this iron Chelating drug, which has serious side effects.
Has anyone with MDS and anemia having issues with IRON OVERLOAD, and how are you dealing with it medically?

[namllits2002]

I posted my preliminary results when I started treatment with Reblozyl in October. Since then my hemoglobin and WBC and RBC have been elevated from administration of the drug. I am working closely with Moffitt Hosp, and they have guided my treatment. They indicated that overall success is defined at hemoglobin great than 9, but I have not reached that level yet. The results so far have kept me off of blood transfusions, which was my goal in starting treatment. Moffitt has recommended increasing the dose at intervals covered in the Dosage Recommendations, and I am now at 1.33 mg/kg dose from 1.00 mg/kg. My next injection will increase the dose to 1/75 mg/kg in hopes that I can reach the target hemoglobin level. If I do not reach the hemoglobin goal, Moffitt reports that there are studies on the way combining Reblozyl with Procrit and other treatments to see if a synergistic effects occurs. And, there are other drugs being tested for MDS. For me, I have had no side effects from Reblozyl other than fatigue, so I am lucky in that regard.

The clinical trials with Reblozyl demonstrated a 50% success rate, so it is expected that as results come in from treatment, the success will also be about 50%.

Hope this update proves helpful, and my best advice is to research the drug extensively and become an ACTIVE participant in your therapy.

[stacey]

Hi,
I was diagnosed with MDS (5q- subtype) at age 34 in 2004 and am now 50.
One of the first things they did with my initial abnormal CBC was make sure it wasn’t a B12 issue. Did they check your wife’s B12 level? I assume they did, but you didn’t mention it, so I wanted to be sure.
For me, they knew it wasn’t an iron issue, so I was given a Bone Marrow Biopsy. They then tested my only brother very early on to see if he was a potential match, even before I considered whether or not to do a bone marrow transplant. They didn’t waste any time discussing options right away such as trying a clinical trial drug at the time (Revlimid, the option I chose, and still take today, because it works best for my subtype), OR a bone marrow transplant. The doctor mentioned in that conversation that if I decided on a transplant, I would need to freeze my eggs in order to have children. It was a lot to take in at a young age, and I’d imagine that’s how your wife feels. I never was sure how I even got the bone marrow disorder in the first place.
In the 16 years since diagnosis, they periodically do a comprehensive metabolic panel lab, and I’ve never had a single kidney issue and always have a normal creatnine and eGFR level. I can’t speak for certain as to whether others with MDS have had kidney issues, so I hope they respond to you in this forum if they have. What the cardiac physician mentioned about the multiple heart caths leading to the kidney issues could very well be the cause.
I’ve only had 1 or 2 Procrit shots, in the year I was first diagnosed and before my Revlimid medicine started working. They may have just switched to Retacrit due to things like shipping issues or cost. Unless Retacrit has less potential heart side effects…? I never received a Retacrit shot, so I don’t actually know anything about it. You might want to ask the next time they give her one so you know.
Please tell your wife I am thinking of her and send her my very best wishes.
Take care,
-Stacey

[Kevin Dugan]

I have had great success with infusions of rituximab.  Previously had several infusions.  Procrit did not help.  RBC btw 11-13 since getting the infusions. No more transfusions. My activity level is back to normal.   No side effects.  8.2 RBC is not a good way to live.  Ask your doctor. 

[Jimmy Greenhut]

Tom, yes I was warned with rash & WBC count dropping. I have RS-T non 5Q. I tried Luspatercept #’s really didn’t bounce w/ side effects. Procrit 60k units weekly didn’t help either. Glad Aranesp is working for you 🙂

[mike abrams]

OK Folks , update on Luspatercept (for me) , I started this thread back in May when I had my first shot……I had a bad reaction (face swelling , barfing etc). My Dr. at the time stopped with the Luspatercept because of the reaction and I went back to 2 shots (40,000 each) of Procrit a week . My RBC has been down all the time , I have been going for weekly transfusions, have received 22 pints of blood since the middle of May. New Dr. advised lets try Luspaterecpt again, about 3 weeks ago. This time I took some type of steroid the day before the shot and morning of…..prior to the injection of Luspatercept my RBC was 7.3 , 4 days after my RBC was 9.4 , a week or so later , last Monday was 9.3 ! Good stuff ! Feeling good with very little side effects , next shot of “L” is this next Thursday , hoping it will hold my numbers up and relief me of the transfusions . Will advise again in a couple of weeks.