Search Results for 'procrit side effects'

[LeAnn Duke]

Hi Lisa,
My name is LeAnn and I am 58 yrs old. I posted a few days ago that I have Refractory Anemia with Ringed sideroblasts. I have been categorized in the low risk category for MDS. The Dr. suggested we try injections of Aranesp so I have been taking 500 mg every three weeks since June 26. Tomorrow is the day we find out if the Dr thinks the injections are working. He said if Aranesp works (“IF it works” and he said that twice) that I could do that for several years and my prognosis is 8.8 years and then we would look at a transplant (when Aranesp stops working). But I have had a transfusion about every three and a half weeks since we started the injections. I feel like my hemoglobin counts are dropping even now, but won’t know until tomorrow of course how low. I usually drop to between 7.4 to 7.0 and it has gone as low as 6.7 with hematocrit at 21. I can say that since I started the injections I am not as symptomatic. I have had some changes in my body which confuse me because I beigin to think it’s working the I go back and the hemoglobin and hematocrit level are still low enough to send me in for more blood. Of course I don’t know enough about blood counts to know what this means other than it worries me that the shots are not working. It is very unpredictable and when I think they are holding, they show up low again. Did you take Aranesp or Procrit and did it work for you?

The Dr. mentioned the next step would be a medication called Vidaza. Did you take this med before your transplant? Were there any bad side effects? How did they administer this med? Daily shots at the Drs office or IV in the hospital? We live about 2 hours from my dr and the hospital and am wondering if we will have to drive every day for a shot. And from what I read some say the shots are 5 days a week and others say 7 days a week. The closest Cancer Center is not connected with my dr and they closed on the weekends anyway. I guess every place is different though!

The good news is I have a twin sister that is going to be my donor and they say that is a very good thing. They say that is like having gold to the doctors!!! Did you have a sibling donor or a stranger donor? I guess my question for the doctor tomorrow will be (if Aranesp is not working) is what are my chances with the Vidaza, how long will I be on it, and after the stem cell transplant what is the normal prognosis for a transplant patient with an identical twin donor?

Another thing is that my twin sister’s husband has undergone a stem cell transplant for multiple myeloma almost 4 yrs ago so she knows first hand what to expect in helping me afterward. She of course was not a donor then. They were able to use his own stem cells.

Thank you for taking time to read this and if you can offer any help I would appreciate it. I don’t feel very brave when it comes to chemo!! That scares me!! I feel like I am positive about this disease and the disease itself doesn’t scare me. Actually, death doesn’t scare me. It is the being sick with chemo frightens me the most!! I don’t want to sound vain, but losing my hair scares me and then whatever ill effects my body suffers after chemo scares me!!

I am glad you have done well with the transplant and that you are alive and doing as well as you are. Would you mind telling me what GVHD is?

[Marge Begley]

I was diagnosed about a month ago and am searching for answers about treatment. I received a 2nd opinion which confirmed my diagnosis. I understand I have a “good” MDS but am confused about tx vs watch and wait. I have received 3 Procrit shots and 1 Ananesp (CO Cancer Clinic) when traveling. Now my Dr. is rec. Revlimid. After researching this drug I was less reluctant to start it. Besides the cost, it seems the side effects are nasty. My latest HGB was 10.1 last week. (I also have Thalessemia Minor which is type of anemia which causes my HGB normally to be in the 10s – it has never been above 11). Why can’t I continue with Procrit injections since they seem to help and just monitor my labs? I am also considering going to a Center of Excellence in Tampa to see their MDS specialist. The more I learn the more confused I become.
Thanks for any input.

[pamelah]

My mother was diagnoses with MDS 3 years ago at the age of 74.- RARES. She was very healthy & took very good care of herself all her life. In the 3 years she has been on weekly Procrit shots for her red blood cell counts which typically are around 11 which is not so bad. She is monitored weekely. Recently over the course of 3 months the shots are not bumping her numbers up at all and her numbers seem to be slowly lowering. The latest is 9.4. My question is that she never got a second opinion. She has suffered for 3 years with extreme nausea and side effects which I feel are from the shots. But her hemoglobin oncologist states he feels that this is not the cause. I have continued to have a nagging feeling but have not wanted to push my mother. But I am now to the point where I feel I have to. I realize Im not a doctor but I try to be informed and aware of her care. So my thoughts are what about getting another opinion, should we have update bone biopsy done to see what is going on? The next step that is being suggested is increase the Procrit but our past experience of this had increased the side effects even more. So looking for some suggestions. Also do anyone have thoughts on facilities or doctors that specialize more in the treatment of MDS in older individuals in the Orange County or LA California area?. There is so much more I can say but Im thinking I should start slow with all my questions.

Thanks for listening. Pamh

[bobweinberg]

During the first 4 months on Vidaza, my counts dropped in all 3 lines. Not really any other side effects. At the 4th month, all my counts started to climb and my HGB went on its own up to 14.4. Platelets and whites went up as well. I was transfusion free for 5 months. The Vidaza lasted longer for others, I have heard of it lasting 3 years. All in all, it was a good experience for me and allowed me to continue chelation threrapy so I could lower my ferritin level significantly. I am glad the procrit is working for you. It did not work for me at all.

[barbinmd]

Diagnosed in april as a result of chemo/radiation/etc for multiple myeloma. Red and white cells are slowly improving after several shots of neupogen and procrit, but platelets continue to drop.

It looks like I may start Vidazia in the next month or so. I’m interested in hearing about the timing and seriousness of side effects and if my platelets respond, would I stop taking it, or must it be continued for a certain number of cycles?

I’ll appreciate any input.

Barb near Washington, DC

[ron baker]

diag 8/11, on Revlimid since 10/11 w/ procrit thru 12/11 and predisone. tx every 3 weeks thru 12/11. still on 10mg revlimid and ceasing predisone in 2 weeks. hgb steady at 12. Had plenty of side effects thru 12/11, none since.

[Doug]

My mother was diagnosed with MDS about three years ago. I have thought about posting this info for a long time and am ashamed I waited so long.
On a checkup at Kaiser Panorama City it was found that she had almost no blood and she was subseqently diagnosed with MDS. The doctors told us she had maybe three months to live and to get her affairs in order. Over the next several weeks, she was given transfussions to keep her going. First it was once every ten days, then once a week, then twice a week. She was 83 years old. Due to the effects of the drugs she was on, she got mouth canker sore so bad she could barely swallow so she was admitted to the hospital. While there she was given intravenous anti viral drugs. Zovirex. She also had been on Procrit.
Her canker sores subsided and we went back to the routine of transfusions but after about three weeks her doctor said her blood levels were improving. After another month or so they were normal. Finally the doctor announced she was in total remission.
She remains clear of the disease to this day. I am sorry the details of this post are not more specific but my recollections are not that great.
I was a little shocked that the doctor didn’t make more of a deal over this and it has nagged at me to this day so I have made this post in hopes that it leads to a cure.
Doug

[MDSdaughters]

I’m writing for the first time as one of the main caregivers for my 87-year-old father who was diagnosed two years ago with low-risk, non-q deletion (IPSS score of 0.5) MDS with refractory anemia. Both Procrit and Aranesp were ineffective so his only treatment currently is blood transfusions every 2 – 3 weeks for his anemia (his hemoglobin count gets down to high 7’s, low 8’s by two weeks after blood transfusion). His doctors tell him that he could continue on the blood transfusions indefinitely, but his main problem now is that the transfusions don’t relieve his anemic symptoms as they did for the first few months. Currently the day after a transfusion he may still feel tired, weak legs, breathing difficulties, dizziness, achiness and general fatigue – although the symptoms do vary day by day and even at different times of the day. Again, his doctors tell him that this is just part of the disease, but I’m interested if anyone has had a similar experience and if there is anything more that can be done for these general fatigue/anemia symptoms.

We have also considered going to the next level of treatment – Vidaza or Dacogen, or looking into clinical trial possibilities. At age 87 these might be very limited and we have to carefully consider the adverse side effects, but I would certainly like to hear opinions on and experiences with these types of treatments.

Thanks in advance for any responses.

[TheBirthofLove]

My mom was diagnosed in August, 2010 with myelodysplasia. She is almost 62. It comes as a result of chemotherapy and radiation that was used to treat her for bartholin gland cancer over the past several years. She had been in remission of the cancer for 3 years when this raised its ugly head. Her bloodwork came up funky and they did a bone marrow aspiration. They found 5% blasts, but she had a lot of deletions and abnormal chromosomes. Since one of the deletions was 5q, the oncologist decided to give revlimid a try. She was also on procrit. Her WBC is critically low, often below 3. Her platelets are 106 or lower. Her hemoglobin is usually around 9-10. She has not needed transfusions yet. A repeat blood marrow was just done a few weeks ago. Her blasts are now 9% and 16 out of 20 of the chromosomes that were karaotyped are abnormal or have deletions. The oncologist has decided to take her off of revlimid. He said that because she is not transfusion-dependent, he does not want to try vidaza or decitibine because the side effects of those drugs will significantly impact her quality of life. He has recommended that she get a consultation at the Moffitt cancer center in Tampa, Florida to discuss clinical trials. We’ve made the appointment. My mom has nobody in her life, but me. She has two other sons…one who is not particularly involved and the other one has autism, so this is beyond his comprehension. I am trying to support her through this and do what needs to be done. We made the appointment at Moffitt. I’ve done a lot of googling and from what I’ve read–due to her age, the fact that her MDS is a result of chemo/radiation, and the sheer amount of chromosmal abnormalities, her prognosis is not good. 6-18 months?! The oncologist is honest, but he has not yet given us a prognosis…I think he wants to keep my mom positive. She has been working full-time as a teacher, but will probably have to stop soon due to the risk of infection and the fact that it’s just getting harder for her to work. She has a lot of joint pain and a lot of fatigue. She also has type 2 diabetes and unfortunately, has never really taken good care of herself, so that is a contributing factor. I was wondering if there is anyone on here with similar experiences who can maybe direct us a bit. I don’t really even know where to start. I am very overwhelmed and I am having a difficult time with this. I have a 14 month old son who is the light of my life and honestly, he is what has been pulling me through. Ironically, though, the hardest part about my mom being sick is that I fear she won’t get to watch her grandson grow up. It breaks my heart. Any words of assistance or encouragement would be greatly appreciated. I feel very alone in this. Lots of love and healing energy to all of you and/or your loved ones.

Melissa

[AngRob]

Hi, does anyone have any information on the study drug: ON 01910.Na, pill form? I have been diagnosed in March 2009 with MDS,low risk,RARS with high platlet counts. I have been on several treatments including Procrit, for 5 months, no response, and Revlimid for one year which also did not help me. My hemoglobin is usually around 8.0 and my last transfusion was in early November. At my last doctors visit, my dr. mentioned to me the study on the drug,ON 01910.Na, pill form. I would appreciate it, if anyoe has any info on side effects and/or response to drug.

[Kirby]

Hi Maureen,
I used Revlimid for 18 mo. successfully as a non -5q patient. It stopped working at that time. Side effects were minimal, the least of any of the drugs I’ve tried.

I tried Vidaza for 4 cycles after Revlimid, no real success. My counts dropped after each cycle and did not recover to the point before the prevous cycle.

I tried a low-dose Dacogen treatment involving a weekly one day dosage at 2/3 the normal 5 day dosage. I only had one week, ie one injection, my counts dropped drastically so we stopped.
My counts dropped more severly with the Dacogen, but my bone
marrow may have been in a worse condition. The Cleveland Clinic suggested the Dacogen 1 inj/wk plan, it seemed reasonable but did not work in my case. I’ve heard that some patients responded better to Dacogen than Vidaza but no real data seems available.

I tried Neumega for 5 months for platelets with little success, it may have helped for about 4 weeks, then stopped. It does not seem to work well for MDS patients..

I’m currently using Promacta (elthrombopag) for platelets. It was obtained from PromactaCares.com on sort of a mini-trial. Several pages are filled out by the patient and doctor. It is a capsule taken at night, easy, no noticible side effects. Promacta seems to have stabilized my platelets in the mid teens. I have no bleeding.
Since Promacta is obtained as a drug outside clinic it is costly, on Medicare it took me thru the "donut hole".

I’m on Procrit 60000/week, Neupogen 480/week or sometimes 2X wk.,
Promacta daily. Trying Thalidomide again. I’ve had no transfusions.

Perhaps staying on the Vidaza will reduce the transfusions.

[billboy]

Hi Linda,

My Procrit injections were covered by Medicare Part B since I received same at a medical facility. There was no resistance to pay by either Medicare or my medigap insurance. Neither was there any out of pocket charge for the drug (except of course the Medicare deductible). I did not experience any side effects – too bad it didn’t work for me. Hope you respond well.

[lindajo]

My hematologist is recommending that I start on Procrit.

Can anyone tell me how it is covered for MDS patients on Medicare? Part B or Part D?

Did anyone have difficulty recently getting coverage on private major medical for Procrit?

What was your cost? What side effects did you run into?

The hospital is working on answering the coverage questions for me, but I wonder what others have run into.Linda

[Tonia]

Hello Sherry,

I truly feel your pain since I am living with the same dilemma. My mom was diagnosed with RAEB-2 with 13% blasts in October 2006 and we lived through the nightmare of learning about MDS and it’s devastating effects. She was one month shy of her 80th birthday at the time of diagnosis and not considered a candidate for induction chemotherapy. She was treated with 3 cycles of dacogen (obtained through compassionate use) and after having a rough time with the 3rd cycle (blood counts bottomed out, developed pneumonia) we were bracing ourselves for the worst, that she had transformed to AML. And then a miracle happened, the BMB in Aug. 2007 showed 0% blast so her hematologist started her on Procrit. After 2 months of injections, her hemoglobin jumped to 12.2 and she was free of transfusions for 16 months. Her platelets and neutrophils never came back to normal levels, but were "stable" (neutrophils between 0.6-0.9, platelets between 60,000-80,0000). Then in March of this year, the unthinkable happened. Her blood counts dropped drastically and a BMB at the end of May showed blasts of 20%. She has transformed to AML. Her latest counts on Monday showed a hemoglobin of 7.1, platelets 38,000 and neutrophils 0.89. She is receiving blood transfusions every 2 weeks and neupogen injections 3 times a week. Her doctor wants to treat her with Vidaza since she responded quite well to the first hypomethylating treatment with Dacogen. The decision to try Vidaza instead of Dacogen was based on recent data showing that Vidaza has an overall survival benefit in high-risk MDS/AML.
The problem is that Vidaza is not approved in Canada, and the only way to access the drug is through the compassionate use program. This means that Health Canada needs to authorize the hospital to import the drug from the US and this can be a lengthy process. We have been waiting for 2 weeks and still no response from Health Canada. In the meantime the clock is ticking and every day that passes without treatment is a day less for my mom, and this is very frustrating. At times I feel so helpless, all I can do is cry and pray.
My mom has always been the pillar of strength in our family and to watch her get so weak and short of breath is heartbreaking.
But we must keep the faith and hope. So I am praying for a second miracle. I pray that the drug will be authrorized and that she can start treatment soon. While there are no guarantees that the drug will work, we need to try.

[Hunter Bob]

I’m in Kalamazoo being treated by a Hematologist/Oncologist who came highly recommended. Procrit, B12 and the ‘white blood cell booster’ shots are shots; everything else is by IV through the port in my chest.

Good luck with the next steps for your husband.

Bob