Whoa! Jerry, that is high. I also read that 60,000 units was the highest one should go.
Lynne, procrit tries to force the kidneys to produce EPO. Anytime you do something forcefully to your body, the organ(s) involved are going to experience some affect. My MIL was on procrit for 9 months. It did nothing for her (not sure why it took us so long to tell the doctor we were going to stop it) but it did affect her kidneys. She does not have kidney failure but they are weaker then they were before the procrit. Is that a result of the disease or the procrit? That’s a million dollar question. However, if you can use the procrit only as needed (ie. when your HGB falls too low) that would be preferable to weekly. One thing that most people forget is that ANY drug that you put into your body is going to affect something. Regardless if the drug supposedly has no side effects. There will always be unintended consequences because our bodies were not made to have drugs in them. It’s a delicate balance between finding the right dose that won’t do damage and enough of the drug that it will help. Does that make sense?
I think your doctor is using some wisdom. I would trust his judgement on this one.
Best wishes,
patti
Lynne …
I have been on 60,000 unit for over a year and had no side effects that I know about. However, my kidneys are failing anyway so maybe they have taken that into consideration. About 2 or 3 months ago the Dr’s at Cleveland Clinic upped me to 80,000 units a week. My hemoglobin is now at 13.9 … the highest in 3 years … don’t know that this helps but good luck …
Jerry
Hi Lynne,
The dosage is the factor most docs are concerned about. Believe 60,000 is what conventional wisdom dictates to be the maximum.
There is a risk of heart attack IF the dosage gets too high. Have never been able to find out what is considered too high. There was a flurry of activity about 2 years ago when some patients developed heart difficulty when given very high dosages on a clinical trial. None of them were MDS patients.
I have been on Procrit for 27 months. Currently at 40,000 every other week. No liver problems at this time.
We adjusted my dosages and frequency as my counts changed. Was on weekly shots, then went to every other week and dosage moved up as counts decreased.
You might want to plug Procrit into a search engine and read over the side effects.
Hi Lucy,
Procrit may help her red counts if her erythropoietin count is low , maybe normal. Its wortha try to find out.
Anything yet on her blast count ant MDS classification?
The horse drug they are referring to is ATG (antithymocytic globulin) it is used to treat Aplastric Anemia. Since AA patients have hypocellular marrow they probably feel it might be worth trying. Make certain you clarify the SIDE EFFECTS! They can be very severe! Since ATG is a horese serum the allergic reactions can be terrible. Tremors, fever, hallucination and more.Takes a couple of weeks in the hospital. The results on AA patients is pretty good. Not the same with MDS patients. Get their thoughts on success and risk!
Megakaryocytes are cells that produce platelets and get the info from her BMB.
The reason I ask is mine have gone up over the years in a response to the low platelet level. The body responding to the low count in an effort to produce more.
Thanks for the info on Beta Glucan. Will look it up.
Hi Bec,
That is good news.
5 weeks without a tx is great.
Which steroid is he on?
His doc must have found an ideal dosage to minimize the side effects.
Keep watching for side effects . If he gets them and they are caught early they may be able to reduce the dosage rather than stop. Hate to see any improvement lost.
It is amazing how a drug and a patient connect and improvement takes place. Reinforces how the differences in patients make it important not to give up on a treatment because it did not work on some one else.
Could very well be the Procrit/steroid combination is what it takes to get his counts up.
My dad goes to the doctor this afternoon. He is currently on Hydrea – has been on this just over a week – after being diagnosed with AML on 12/8.
He is SO TIRED. And also short of breath. He’s probably going to go ahead with the chemo, but said he may also try to postpone until after the holidays since he is now showing some reaction to the Hydrea.
Wondering if they may do transfusions?? I have read the posts about requesting irradiated, filtered blood. Is this still required since he has AML now? Anything else to require? How long does it take to do it? And what about any possible side effects?
How soon would he feel some improvement and how long would it last?
Also, any thoughts on starting Procrit or Aranesp?
I’m anxious to see what his counts are doing and what the options are at this point.
Viola,
What your dad is feeling in neuropathy. I was on Thalidomide for one month and suffered from this side effect. My oncologist took me off the medication immediately. The neuropathy, in some cases, in irreversable. This is unfortunate, because I was showing signs of improvement with the drug. Revlimid is the “replacement” for Thalidomid. It’s suppose to have fewer side effects. There are FDA issues at the moment that are keeping it from being released until after the turn of the year. This could be an option for your dad. Good luck!
Chip
——————–
48, Dx w/ RARS April 03. Long arm of chromosome #20 missing. On B6. Unsuccessful month w/Thalidomide (severe neuropathy) Jan 04. RAEB discovered after 4th BMB in Aug 05.
2 rounds of Vidaza, Weekly Procrit. Neulasta as needed. Found bone marrow match and donor. Waiting for transplant date.
Dana.
My Dad is 79. Same story… He should NOT be driving. It is just a matter of time. He gets his Procrit needle every Thursday and is totally incompacitated with bone pain all day Friday and part of every Saturday. When I told the Dr. about it last week, Dad bawled me out right there and then. “NO NO NO…it is my Arthritis acting up. I do not have side effects from the shots.” He went out raking yesterday and nearly passed out from the strain but he tried to go out again thismorning. My Mom blocked the door so he couldn’t get by. He finally gave up and went to lay down. I think it is that ‘stubborn as a mule’ disposition that these men have that has kept them going strong for this long. They say that ‘mind over matter’ goes a long way. I keep hoping and praying that it does. If so, my Dad will live a long, long time.
Caroline
Lynne,
My Dad has had 6 Procrit injections so far. I give them to him so I get the chance to monitor any side effects. I give him the shot on Thursday mornings. By evening, he is sore in his joints. By Friday morning, he can barely move. It lasts the entire day. He has alot of arthritis and complains that it is ‘acting up’. I mentioned this to the Oncologist on Tuesday and he said that joint pain after the injection means that the Procrit is stirring things inside the bones up and causing them to work at making new red blood cells. It will usually affect joints which are already weak or sore. It will irritate them more. That was his simplified way of explaining the pain. I appreciated that. Now it makes more sense to Dad and I. He said that it is not unusual and that Dad can take as much as Tylenol #2 for the pain. I asked if we could divide the 40 000 Units over 2 injections per week. Doctor advised against it saying that Dad would still react to the shots by feeling very sore the next day so why put him out of commission for 2 days every week when he is already sore for 1 day per week?
Caroline
Hi All!
Has anyone with MDS experienced any kind of memory loss? Or loss of comprehension? And I’m not talking about possible side effects from any of the medication we may be taking in order to keep our MDS at bay. I was experiencing this before I received any significant treatment. I know my body isn’t 100%, so my brain doesn’t have the “crispness” it used to have. I found a doctor in Boston doing memory testing on MDS patients (not intended to be a joke…I forgot her name!), but she can’t reveal any of her findings until the research is complete. Any thoughts?
Hope all of you are well!
Chip
——————–
48, Dx w/ RARS April 03. Long arm of chromosome #20 missing. On B6. Unsuccessful month w/Thalidomide (severe neuropathy) Jan 04. RAEB discovered after 4th BMB in Aug 05. 2 rounds of Vidaza, Weekly Procrit. Neulasta as needed
Hi Theresa,
It is difficult to determine how long a MDS patient will survive.
How old is your father now?
How long has he had MDS?
Is he considered high risk?
What is his blast level?
Is he subject to sinus infections, bronchitis, pneumonia etc?
A low HGB/RBC can put a strain on a patients heart.
Has he ever tried Procrit or Aranesp to boost his red cell counts?
Has his WBC, particularly neutrophils been very low? Neupogen might help WBC.
Lots of factors to consider.
I have had MDS for almost 9 years. A friend has had it for over 15 years. Others have not been that fortunate.
It is very important that he is being treated by a hematologist experienced in treating MDS. It is also important that he is being seen by an internist also. MDS can cause some nasty problems with various organs when counts get very low. They must stay on top of his health issues that could be a result on MDS.
MDS is seldom the cause of a patients death, but the effects on other organs is usually the cause.
Caroline,
One of the side effects of procrit is bone pain. The bone pain typically only happens if the shots are working. Try having your dad take a regular dose (1000mg) of MSM 3 times a day everyday so that on shot day his body has a good amount of MSM in it. That might help alleviate some of the discomfort. Also, you can get some Tiger Balm patches in the health food section of Fred Meyer/Kroger. You can try putting a patch over the most painful parts of his body. The patches are about 6″x6″. When my husband has any pain in his body he slaps one of these on and is amazed at how well they work. They are natural and there are no contraindications with the procrit. Just a few things you can try.
Patti
Caroline,
I have taken Procrit for over a year and I do not know if there is a significant difference between Procrrit and Eprex. But I have not suffered from the side effects you mention at all. Debbie gives me my shot, it stings a little and that’s the end of it. I went to the Eprex website and read their patient information form and it mentions joint pain as a possible side effect. I would certainly mention this to your doctor as soon as possible. I don’t know how old your Dad is, but I am 61 and in otherwise good condition. I just cannot believe that he should be having so much trouble. Good luck to you.
Jerry
Hey Neil and Suzanne,
Thank you for responding. Dad is willing to try if side effects are not too great. Besides tx’s, he is living life “grand”. He does not even mind the weekly procrit shots now.
Neil, this month is his five year mark. I remember writing you so upset that he had beEn given five years to live. You gave us your “pep” talk about “life expectancies”. We are so blessed to have people like you to “uplift” patients and families when the DR’s can be so negative. Thank you again from our family. Positive attitude helps so much in some cases.
Dad is still laying brick on my sisters “out of Africa house.” He attends almost all of the football, volleyball, and soccer games of his 8 grandchildren that are playing. He is doing well but one thing we know now with this disease is that we treasure every day with Dad. It has also opened my eyes with other loved ones.
I try to remember to tell all that I love them quite often.
Thank you again Neil. The people on this site LOVE AND APPRECIATE you.
Bec
Hi Lynne,
Have a couple thoughts for you to discuss with your doc.
Procrit is a synthetic erythropoietin. A substance produced in ones kidneys that stimulates bone marrow to produce red cells.
If your doc checks your current epo and iron levels you will get an indication of how successful Procrit might be. If your epo level is low and iron is normal chances are it will work. Procrit needs iron to work. Those with low iron take iron supplements to increase success.
When I started on it my HGB was in the low 10s RBC in low 3s and had been trending downward for a few months. Fatigue was becoming a factor, particularly at the end of the day. Very tough to get up the stairs.
My doc started me on 20,000 units a week (Nov.2003). His reasoning was, lets see what 20,000 does. We can always increase it if and when necessary. This might also allow us to increase the effective time
I could be on Procrit.
I had a very quick response. My counts improved in a weeks time. HGB went up to 12 and RBC went to 4. There were a few weeks I had to skip a shot since my HCT was over 37. Medicare will not pay for Procrit on a patient with HCT over 37.0.
We then went to 20,000 units every other week. Counts slipped a bit, but I felt great. With more time my counts slipped a bit more so the dosage was increased to 30,000 every other week. Am still at 30,000 with HGB 11.5 – 11.9 RBC 3.5-3.8.
Another “side effect” I experienced was my WBC and Platelets increased. Seems the epo triggered my marrow to increase WBC and Platelets also. Not much, but any increase is great. I had occassion to have CBCs between shots ( at the 7 day point) and my WBC was over 2 vs a “normal” of 1.2 – 1.7. Platelets jumped to 18,000 to 20,000 vs my regular 10,000. A great side effect that occurs very infrequently.
No adverse side effects at all. Energy levels are great.
I realize that at some point Ptocrit will wear off. But I have had 2 great years on it. When my counts begin to decline —after we are at 60,000 per week, the plan is to go to Aranesp,(Darbopoietin) (sp). A drug similar to Procrit but lasts longer. Many patients that were non-responders to Procrit responded to Aranesp.
