MDS is a bone marrow failure disorder
MDS is a blood cancer
Learn More >

Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

Home Demo forums Search Search Results for 'procrit side effects'

Viewing 15 results - 106 through 120 (of 161 total)
  • Author
    Search Results
  • #15329
    Neil
    Member

    Hi Shari,
    The Aranesp is working well. We are still getting the dosage and interval adjusted. Currently get 400 mcg every 3 weeks. They will not give me a shot if my HGB is over 12.0. This applies to both Procrit and Aranesp. Not sure if Medicare set up this stipulation or if it was established by Amgen

    #15328
    sdrake
    Member

    Caroline,

    Yikes! I don’t like the sound of that! It may explain Dad’s symptoms though. His dosage has been reduced for about a month now, and he says he is feeling better. Wasn’t your Dad on Procrit? Do I remember correctly that the Aranesp really brought his HGB up when the Procrit wasn’t doing much good? Maybe a switch would be good for my Dad too?

    Thanks for your help!
    Shari

    #15327
    Caroline
    Member

    Shari,

    My Dad was on Procrit for awhile and now he is on Aranesp. With both drugs the doctor watches carefully to make sure that Dad’s hemoglobin does not go up too high. The reason that he explained to me is that when the hemoglobin gets too high, the blood thickens and the heart has to work much too hard to pump it. The result can be a heart attack. Last week Dad’s hemoglobin was up to 149 so now I only give him his Aranesp needle once a month to give his hemoglobin time to drop down to 120 (normal) again. I believe that both drugs work on the same premise.

    When Dad was on Procrit he was getting 80,000 units weekly. Now he is on Aranesp but he receives a much lower dosage. He gets the equivalent of less than one third of the dosage of Procrit.

    I hope this helps.

    Caroline

    #15326
    sdrake
    Member

    Thanks, Neil. I’ll check out that information. Maybe even the 60,000 is pretty high? How is the Aranesp working for you?

    Shari

    #15325
    Neil
    Member

    Take a look at the Procrit web site. Think you will find dosages over 60,000 are not usually recommended. Side effects include blood clots, heart issues.
    Was on Procrit for 32 months—40,000 units—no side effects at all
    Heres a link to the Amgen prescribing info
    http://www.procrit.com/common/prescribing_information/PROCRIT/PDF/ProcritBooklet.pdf

    #15324
    sdrake
    Member

    My dad has been on Procrit since being diagnosed over a year and a half ago. The oncologist upped his dosage to 80,000 several months ago. I know I have read on the forum about higher dosages causing potential problems, but I can’t find those posts now.
    Dad has experiences some rapid, irregular heart beats along with some pain in his chest. He was referred to a cardiologist who did some testing. He found nothing wrong, and put dad on beta blockers which seem to be helping. Dad has been doing really well – his HGB has been in the 11-12 range for quite a while now, so they decreased his Procrit dosage. My question is could the higher dosage of Procrit have been part of the problem? Thanks for any insight.

    Shari

    #15027
    Neil
    Member

    Hi Chuck,
    Would get more info on the implications of the cytogenetics report. What do they feel about the monosomy 7 and trisomy 8?
    If the Del 20 is a deletion of the long arm of one chromosome 20 it might explain the low platelet count. Many of those with a 20q – have a pretty good prognosis. Question surrounds the monosomy and trisomy situations and what they mean for the future. If the docs can provide a valid prognosis.
    When I was initially DX, I wanted to try every drug out there to beat this thing. Like you I did not have any symptoms!!!! That turned out to be the critical factor!!!
    My doc posed a question. If you do not have any symptoms and feel reasonably good, do you really want me to give you a drug that will make you feel rotten and might trigger symptoms that will complicate the future and possibily start a decline in counts that we may not be able to stop?
    The answer was obvious. As long as I can feel well, aside from the bone pain/ache (and how much of that would I have even if I did not have MDS) I will not go for any drug options. If my counts begin to decline we have another situation to evaluate and decide on how we will deal with it.
    I tried Amifostine. Pentoxifilline and Ciproflaxin for 90 days several years ago. Fortunately Amifostine is a pretty benign drug. No reaction to it at all. Absolutely NONE. No improvement in my counts nor in the counts of the other 5 people who tried it at the same time. Since then the MDS docs have concluded it is not a viable option for MDS patients.
    My best results have been with Procrit and Aranesp. Responded to Procrit for 32 months and am now responding to Aranesp—300mcg every 3 weeks. Keeps my HGB at 11.8 -11.9.
    WBC is in the 1.2 area, but no issues with infections. ANC is in the 1.2-1.6 range. No action planned till (if)it hits .5
    Platelets stay in the 10,000 range, but no symptoms. Very minor bleeding when I get careless. Nothing I can’t deal with.
    After over 9 years of this why would I try Vidaza, Revlimid or Dacogen?? They would drive my counts down at the beginning of the protocol. Could we count on getting them back up? Don’t know. Why would I want to deal with nausea, fever and the rest of the side effects?
    The time may come when my counts decline. If and when that occurs I will deal with the specifics. In the meantime I thank God for letting me get along as well as I have (although I have a few private words for him for letting this happen) for all these years.
    How close do we compare in the overall MDS picture? Hope you can gain some insight.
    Lean on your docs for their thoughts.

    #14456

    In reply to: requesting Neil's help

    bety
    Member

    Neil, thank you for your rapid response and very helpful insights.
    My husb is getting 300 mcg aranesp every 2 weeks. Up until Friday, he has been taking iron supplements. I thought he should stop taking them because I was afraid that the extra iron might be contraindicated now that he is becoming tx dependent. I did not realize that it takes several years for iron buildup to take place.
    I’ve read that procrit is sometimes more effective than aranesp, but I don’t think my husb can tolerate the frequency. As it is, he is so depressed with every medical contact.
    I am reluctant for him to have another BMB because of the discomfort and the big drop in his counts that came with it. This could have been a coincidence.
    Although he was Dx in ’03, his counts have been dropping intermittently and gradually for the past 10 years. Because he felt well, we did not persue a consultation.
    I’ll have to ask if the platelets have been examined for quality or clotting time. He has no bruising, petichiae, or bleeding gums
    but suffers from rare but occasional nosebleeds. Our internist has been following his vital signs, which are generally within range. Systolic hypertention, which has been reduced significantly with juicing carrots and celery, has been an issue. We monitor his b/p closely. Because of the aranesp side effects (they tend to lower blood counts), we try to avoid b/p medication.
    ——————-
    Husb:age 86, Dx 7/’03. RARS, pancytopenia with multilineage dysplasia. No abn. chrom. Now, non-responder to aranesp. Responds to neupogen. First tx Aug. 11, 2006

    #13508
    Rackon
    Member

    Hi, Jan. I hope I our story will be of help. I understand how worried you must be feeling – this is such a frustrating and puzzling disease.

    The short answer to your question is “yes”.

    But it’s been a bumpy road. Here’s the long answer.

    Please keep in mind that this is only our experience with Revlimid – people have very individual reactions and tolerances to this drug. Most of the anecdotal reports indicate it takes 4-8 weeks for the drug to do its thing and it doesn’t help everyone. Rvl is not a sure thing.

    This has been our road thus far.

    My 86 year old dad has been on Revlimid off and on since April. (He’s my best friend too – I’m an only child).

    He was diagnosed with CMML in 2002 (some docs say it’s a variety of MDS, some give its own classification). He does not have the 5q- or other genetic anamolies.

    He received Aranesp injections (EPO) every 3-6 weeks for over 3 years and remained tranfusion free. His white cells and platelets stayed in the normal ranges. In February, the disease progressed to the point that even increased doses of Aranesp stopped working for him, so we were back to transfusions.

    Dad is one of those people who builds anti-bodies even to irradiated blood, so his transfusions started getting closer and closer together, holding less and less well – some weeks we were up to 2 TXs a week (4 units). We were fighting to keep his Hg counts in the upper 8s. He could go from a 9.8 to a 6.0 in only 3-4 days. This obviously was not a good progression.

    Our onc-hematologist had previously had success treating with Thalidomide, and was very pleased with several of his patients’ progress on Revlimid. So Dad started on 10 mg Rvl a day the end of March, first of April.

    As a frequent visitor to this site, I was prepared for all his blood cell lines to drop, and indeed all cell counts plummetted after 10 days – 2 weeks on the 10 Mg dose. The doc gave my dad about 8 days off and then restarted him on 10 mg every other day, essentially halving the dose. Although the HG didn’t bounce back, the other cell lines did so immediately.

    Dad tolerated the lower dose much better and had been on it around 2 weeks, down to 1 TX a week when he fell and broke his hip April 22. He was admitted and taken off Rvl and Coumadin…the orthopedists waited 5 days for the Coumadin levels to come down before his hip was replaced. The hospital gave him 3 units right before surgery because he’d been on coumadin along with the Rvl and the surgeon was concerned about bleeding during the operation.

    Dad was then off Rvl for around 12 days and started back on it after he got to rehab.

    But a funny thing happened. His HG stayed in the upper 9.8 range for much longer and he went almost 3 weeks post surgery before he needed another transfusion. He hadn’t held that long since in months.

    His next 2 TXs were 2 weeks apart – not as dramatic but still much better than the 2x a week he’d had to undergo in February and March

    This week, on Monday his CBC showed an 8.6 HG, down from 9.6 last week, so I took him for a cross-type & match on Tuesday, with a TX scheduled today. This was typical for the last several weeks.

    But I got a call from the bloodbank yesterday – our doc was cancelling the TX: dad’s HG had gone UP from 8.6 up to 9.6 ON ITS OWN, from Monday morning to Tuesday afternoon.

    We’re hoping this is a sign that the Rvl is really starting to kick in and his marrow is recovering. His platelets are up too. (I know all about those awful looking arms.)

    It’s way too early to say we’ve turned the corner, but this is still very good news – his counts have maintained for periods but he has *never* had his HG go UP on its own since he was diagnosed.

    As for side effects, Dad has had the occassional diarrhea, gas pains and dry, patchy skin that often goes along with Rvl therapy. He also has other health issues to deal with: chronic, renal failure (non-dialysis), the hip recovery, heart arrhythmia, acid reflux and its attendant loss of appetite. But the crisis issue – the CMML – is on the improve, at least this week. For now, he is remaining on Rvl therapy.

    I’m guessing you might see some improvement in your mom after she’s been off the Rvl for a week or so. Improvement may not be dramatic, but her cell lines should start to bounce back. Response varies so much from individual to individual. It’s quite common for patients on Rvl to do much worse before they start to do better – that was certainly the case for my dad. I assume your mom is also off Coumadin now too – that should help the bruises.

    I suspect my dad was in much worse over-all health than your mom when he started on Rvl, EPOs having failed for him, so we had little to lose by trying Rvl. (The doc had given us the “if things continue in this direction you might want to get your affairs in order” talk. Of course, things have also been complicated by Dad’s broken hip.

    I can tell you that the oncology doc tolds us that if Rvl works for you, it’s probably going to do so within 6-8 weeks. Several folks on this forum have reported that their cell lines bottomed out on Rvl, only to see them rebound 4 or 5 or 7 weeks later. Depends on the person and the dosage. Some people can’t tolerate Rvl in either strength. It can be very scary watching a loved one you’re hoping will get better actually get WORSE for weeks while all you can do is hope the drug will kick in.

    Dad’s progress has been a bit difficult to track since he was on again off again for the first 6-7 weeks. But we did see progress about week 6 from the beginning, even with breaks in the regime – his TXs holding longer. This week, 6 weeks after he started back after the surgery and 11 weeks after we started the journey, suddenly his improvement has jumped forward.

    I’m hoping and praying this trend continues.

    I suggest you check out some of Patti’s posts about herbal supplements etc. I think it’s absolutely critical you help your mom’s body cope with the effects from the Rvl and her disease. Good nutrition is extremely important – difficult with my dad who has little appetite.

    One other thing our doc told us: he has had very good luck with Revlemid (and Thalidomide before that) in treating CMML patients and MDS patients without the 5q deletion. He has several people who have been on it longer than dad and a couple of those folks are in remission – no TXs for one lady (who got into a study) for 10 months!

    If your mom was having problems and no repsonse on the lower dose 5mg Rvl, I can certainly understand why you’d back off the therapy…especially since she was doing well on Procrit & Neupo without transfusions. It IS a quality of life issue. I hope you’ll keep us posted on her progress now that she’s stopped Rvl – its such a new drug that we’re all learning about it as we go – docs included.

    Good luck, and feel free to email me if you have any specific questions.

    #13497
    Neil
    Member

    Hi Britt,
    I looked at Prednisone at one point as a means of boosting my platelets. The side effects are nasty! Weight gain, face begins to become round if left on it long enough for longer periods of time. Nausea, neuropathy etc. Suggest yopu plug it into a search engine and take a look.
    My doc commented it will provide an “artificial” boost in counts. Seems there are WBC, RBC and platelets in ones tissues and the lining of blood vessels. Prednisone (and other steroids )releases these cells into the blood stream where they are counted. Question is how long does this last?
    Im my case the plan was to use a very low dose if it became necessary. BUT– Vidaza, Revlimid, Dacogen,Trisonox, Procrit, Aranesp and a few other drugs that have had some fairly good results came along and put Prednisone way in the background.
    Would really urge Patrick to go to Stanford.
    Believe the y- 5- refer to chromosome deletions. Would have to see his cytogenetics results to be sure.

    #12359
    Eric K
    Member

    I’m 55 and have had RARS since about ’99. I was on Procrit for several years but eventually became transfusion dependent about a year ago. Tx used to be 3 to 4 months apart but are now 2 months apart. After a TX, Hgb would be around 11 and slowly drop until it got in the low 8’s, then another TX and start the cycle again.

    I started Revlimid 5 weeks ago (10 mg) and my hemoglobin seems to be holding constant in the low 9’s for the time being. The main side effect was dry skin which was causing itching but using hand cream seems to deal with that problem. I’m inclined to get another Tx and see if the Revlimid can hold the Hgb steady around 11. I don’t seem to have any other side effects.

    #12341

    In reply to: My Dad and Revlimid

    Lydia
    Member

    Ron from Michigan – where do live and are you seeing a doctor in Michigan as well as Houston? Just wondering as mom lives in Michigan also.

    Assume you were tx free during Revlimid treatment. Wonderful – even if temporary. Mom was on Procrit for awhile and was tx free then that stopped working also. Back to tx’s also.

    Sorry to hear about the clot and taking you off Revlimid. Do they think the Revlimid caused it? Sure hope the vidaza helps you ! Sure it will !

    What were YOUR side effects with Revlimid. Mom is going on it soon – am keeping up-to-date with everyone’s symptoms. Will keep posting with her experiences with it also.

    #12340

    In reply to: My Dad and Revlimid

    PhyllisA
    Member

    Viola,
    I was in the clinical trial reserch @ M D Andersons in Houston TX and started the revlimid 9/11/03 thru 11/25/04 and had been getting TX’s every 3 wks prior than was dropped from the trial because I had a blood clot in my lung and later had to have a TX after going 52 wks without one had some side effects but nothing I couldn’t deal with going to be going on vidaza soon as procrit and nupogen didn’t help and so back to getting TX’s every 3 wks
    GOOD LUCK & BEST of HEALTH to your Dad

    Ron from Michigan

    #12101
    Jerry
    Member

    Lynne …

    I have been on Procrit for well over a year and have never had any side effects except for the rise in my hemoglobin (good). I looked uo side effects of Procrit on 3 different sites and found no mention of the liver. So, for me, I have never heard of a liver connection. Good luck.

    Jerry

    #11653

    In reply to: procrit and kidneys

    lynette
    Member

    Hi Lynne,
    Procrit is an interesting drug. It was originally developed for anemia related to end stage kidney disease. When positive results were discovered, other patients were given the drug. It is used for cancer patients, HIV patients, and patients with Rheumatoid athritis.
    Procrit is synthetic Erythropoietin, a hormone naturally made by the kidney. However, it does not work on the kidney. Rather, it works on the erythroid tissue in the bone marrow, where natural e-poietin would work. The drug stimulates the formation of RBCs.
    Although there is no known direct harm to kidney, Procrit can cause side effects. It can cause hypertension. Prolonged hypertension can lead to kidney disease. Also, Procrit can increase the body’s levels of BUN, creatinine, uric acid, and potassium. This can be harmful to the kidney.
    For most patients however, the benfits of Procrit have outweighed the risks.
    Hope this was helpful!
    good luck, Lynette

Viewing 15 results - 106 through 120 (of 161 total)

Login

Login

Search Forums

Review answers to commonly asked questions or get answers to your questions from an MDS expert