Hi Mary – I’m almost done with the first round of Vidaza and was so sick the first 2 days – they now start treatment with a ‘bag’ of anti-nausea stuff. I feel OK but blood counts are dropping. They classify that I have pancytopenia – red & white cells are low as well as platelets. During this first round, I have had 2 transfusions in 2 weeks and platelets tomorrow.
Numbers: rbc 2.9, wbc 2.6, platelets 10, hct 26.4, hgb 9.3 (after the transfusion). Getting procrit shots on schedule and will get a shot ‘of something’ for white cells the day after my last treatment in this round – then blood tests every other day during the ‘down time’ between rounds.
Will see how round 2 goes next month …….
Bob
I was diagnosed with RARS-Interm. 1 mid-March this year (2009). RBC, WBC, Platelets all extremely low. ANC now is 1.1 Started immediately on weekly shots of Procrit after diagnosis, additionally B-12 shots each month (these started in January before the diagnosis). Have had a liver biopsy and bone marrow biopsy – that’s when they diagnosed MDS. Had platelets added before each of the 2 procedures. Have had 3 transfusions of blood between mid-March and last week.
So, it’s only been a couple months getting the Procrit shots – Dr. says this is going pretty fast so wants to start on Vidaza treatments. I guess they’re called ’rounds’. Will start the 7-day injections June 1 and go 4-6 ’rounds’ – at least that’s the plan.
I have an appt. with a general surgeon next week – getting a port inserted the end of May so they can do the treatments.
Glad to hear your husband had little nausea; understand everyone is different.
No reactions to Procrit shots – I’ve heard people say they get tired for a day afterwards – I wouldn’t know – I’m tired all the time anyway 
Thanks for keeping me going with answers to questions that probably have been asked many times before.
I have been on 80,000 unites of Procrit a week and have been dizzy/nauseau for over two months now. Anyone else have those side effects? My docto may go to Procrit&G-CSF combo.what is anyone’s experience with that? I get red cells every 7 to 8 weeks.
Lynne
Plantcollector,
To say that there is some confusion regarding Medicare and Aranesp, is an understatement. Your approach is sound – have the office folks check the status for Medicare remembursement. As I’m sure you know, drugs administered at your doctor’s facility are typically covered by your Medicare Part B insurance. As I understand it, the drug would be covered by your Part D insurance if you self-injected at home, with the coverage subject to your particular Part D insurer.
Some people died from administration of this drug, but apparently, only if their Hgb was high at the time. The study that presented the information resulted in changes in Medicare’s handling of Aranesp claims. I don’t say this to scare you, but to indicate the reason for the recent numerous articles on this drug and Medicare coverage/restrictions.
See the following:
http://attorneypages.com/hot/procrit-aranesp-may-increase-risk-of-death.htm
http://www.cms.hhs.gov/ContractorLearningResources/downloads/JA5699.pdf
As with any drug there are potential benefits and possible side effects. I hope it works well for you (you’ll note below it didn’t do anything for me) On the other hand my doctor didn’t measure my EPO before administering Procrit or Ananesp. I didn’t look it up, but I think it was recommended that this kind of treatment was not likely to help if your EPO was 500 or greater.
Thanks for your note — I actually think my mother had MDS for a quite a while before she was diagnosed — In reflecting on the past years, she’s had severe anemia, dizziness, nausea, fatigue well before her breast cancer was diagnosed in May. But, maybe she’d been on the edge — and the breast cancer and radiation treatment pushed her over the edge. Her diagnosis is really a relief to finally know why she’s felt so badly for so long — She thought for a while it was “in her head”. I talked to the doc Thursday – I asked him specifically about “multiple chromosonal defects” that he mentioned during a prior conversation (in addition to 5q-)… he started rattling off numbers and letters so quickly I couldn’t keep up — He also told me that in addition to the red blood cell issues, she also has a platelet and white blood cell issue — so all that puts her in the highest risk category. She started on Revlimid 12/4…we’ll see how that goes – She’s been really tired and feeling lousy the past 3 days — It is so hard to know what to attribute it all to… the new med and its side effects– maybe she’s gotten the flu… maybe her blood counts are low. She also will continue with weekly Procrit shots — and she is set for a Zometa treatment 12/26. The doc said it’ll take 3-4 months before we see how things are progressing. He told we should be hopeful that she’ll go into “remission” – which isn’t a word I’ve read about when I’ve researched MDS – perhaps he meant that she’d need fewer transfusions? I did ask him about the benefits of her continuing with the breast cancer hormone treatment — and he said that if she goes into “remission” from the MDS and continues with the breast cancer hormone, then her chances of recurrance of breast cancer will be reduced. I still question putting more chemicals into her body and all of their side effects with her prognosis — He said he’d like to keep things as is for 3-4 months to see how she is resonding — and if she is “going downhill”, then perhaps he’d consider taking her off the breast cancer hormone. I didn’t know about the Zometa treatment until yesterday — so now have a call in to the doc again to find out about that — (the receptionist told me about that appt when I was scheduling my mothers weekly blood tests/procrit shot appts – it was the first I’d heard about it!) I am sure learning a lot — Thanks to all for your guidance!
Birgit,
We are thankful to your mother and others who were on the trials and helped to get revlimid approved. Our prayers are with her now. Tommy got on revlimid on Feb 28. How long before the revlimid started to work? How low did your mothers hg get? After two tansfusions(3 units each)2 weeks apart Tommy’s hg is 6.4. Doctor seems puzzled? We are also undergoing lot’s of cardiac tests. We go back on June4 for cbc. We go every 2 weeks but wonder if it shouldn’t be weekly.Will finish 1st 28 days of revlimid on June5. No real side effects yet. Thanks for writing.
Dot
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husband dx w/MDS 5q- (98),started Procrit and Neupogen weekly in 03,up to 60,000 units Procrit weekly & Neuogen twice weekly,Revlimid daily (5/09/08)10mg,tx dependent since Feb 08, hg 6.4
Dick,
Dr. Ron Paquette is WONDERFUL! I took my father to UCLA for a second opinion and even though it cost roughly around $500 (we have HMO), it was every dollar well spent. Dr. Paquette confirmed my dad’s diagnosis and made sure we felt comfortable with whatever answers he gave us. We probably sat with him for approximately 45 minutes to an hour. Later while we were leaving the clinic, we saw Dr. Paquette running to another building. Needless to say, we held up his time, but not once did he show any impatience.
I also Dr. Paquette at the MDS convention that was held in Las Vegas last summer. He exemplified such an efficient memory as he actually recognized me!
When we saw Dr. Paquette, he gave my father 3 treatment options: 1) Procrit; 2) Vidaza; 3) Vidaza + Procrit. We held off Vidaza for a year, and finally caved in this month and began the Vidaza. My father completed his first round (03/03/08-03/07/08) and has not experienced ANY side effects. The only side effect, if you can call it a side effect, is bruising around the needle insertion area.
When I asked our Kaiser hematologist regarding Vidaza vs. Dacogen, he said both did the same thing; that the only difference is that Dacogen is administered in a hospital for 3 days (?). He said that he recommended Vidaza because he would be adminstered at the hospital and my dad would be able to go home afterwards.
I will keep you updated with the Vidaza progress. So far, from his CBC on Friday 03/07/08, his platelets took a dive to 88. Usually, he maintains a platelet level from 111-130. His wbc’s are still strong at 4.2. His hgb is a 7.9. But his hgb was expected as he receives rbc’s every 2 weeks. We have a doctor’s appt tomorrow and he should be receiving 1-2 units of rbc’s tomorrow.
Has your doctor mentioned Vidaza? I wonder why some doctors choose Dacogen over Vidaza, and vice versa. Any thoughts?
Welcome McP,
As you can read on my signature, my husband also has MDS-RARS. He was diagnosed in 2000, but most likely had it quite a while before that. He initially did Procrit and then Aranesp. It helped, but eventually did not prove to be beneficial. The first chemo treatment that he tried was Vidaza. He was receiving TXS once a month prior to this. He was on Vidaza for one year and was TX free. His counts began to drop, he needed to be TX’d again and he went off Vidaza. His TX needs were every 2 weeks. Three months later he began Revlimid. He did 4 months of continuous treatment on it, but it never reduced his need for TXS. That was 5 months ago and he has just completed his 3rd cycle of Dacogen. We are waiting to see if this could be an answer, albeit temporary.
If you go back and read the different posts, you will quickly learn that everyone responds differently and has different side effects. There is no “one” answer for this disease. For example, my husband had very few side effects from Vidaza and Revlimid. Dacogen has been a whole other story….yet others on this site have experienced the opposite. It is all very individual.
If you have more questions, just keep asking. We will try to help you and your wife along the way. Of course, we don’t have all of the answers, but it does help to read about others’ experiences with the treatments for this disease.
Keep us up to date!
Mom has had high ferritin levels for years. Sometimes 5000. She gets Desferral with each transfusion. She tried nightly infusions at home for a few months but it didn’t make a difference. Sometimes her ferritin level will drop to 3000 with no treatments. Her oncologist knew she did not want to take Ex-Jade. Now her new oncologist insists she take it. Even went as far as calling ExJade company and placing the order. The cost is way too much, over $5000 per month. Not to mention the side effects. MY thought is she has had the high levels for many years. They fluctuate greatly. Even if she took Ex-JAde, how are we to know if it was really working. She is doing well off of all chemo and just getting blood every 2-3 weeks and Procrit weekly. I don’t like adding a drug that can make her feel bad again. She lives independently, and at 81 years young, wants quality, not quantity.
Can anyone share their ExJade experience?
Hi Rose..I am new here also, just doing my first post..My Dad is also 79 and He has been on and off Vidaza and doing Great!! He started Vidaza in the year 2005 and procrit He had 8 Vidaza treatments had some side effects but they gave him neausa med. before treatment which helped alot. When he first started his Blood count was a 6. had blood transfusion. now his red blood count is a 12.1 and white count is 7.20 platlet is 248 and monocyte is 14. He took a break for 4 months and his counts are comming up on there own. The Dr. just last week said he would like him to start again because there has not been any study done on someone that got off it. I would like him to stay off and if his counts drop then start it again. But the decision will be his. Just tell your Mom things will get better..Just hang in there. Here is the Phone Number for the Drug company they are very Helpful..1-866-742-7646 Keeping You in my Prayers triciab
It would be very difficult to arrive at a prognosis at this time.
His:
MDS classification
Blast count (if any)
Abnormal chromosomes
Cell counts over the next few months
Bone Marrow Biopsy results
will all be used in the determination of his prognosis. His counts look pretty good. The platelets bear watching, but if he does not have any symptoms of low platelets so much the better.
My platelets are generally in the 10,000 range. They dip to 6,000 or go up to 11,000, but long term hang in at 10,000. I am asymptomatic. On the other hand patients with platelets between 50,000 and 75,000 can have bruising and bleeding issues. It takes a bit of time to see how they will react.
Most of the material published prior to 2005 is pretty obsolete. The basics are still sound, but items such as length of survival are not valid any longer. There have been substantial advances in MDS reasearch and treatment over the las 2 plus years.
Would hope he has an associate that is a hemotologist or oncologist that can provide him/you with the current thinking on treatment and drug options.
His HGB at 10.5 is not that bad—unless he feels fatigue. As we age the threshold for fatigue becomes lower. If fatigue becomes an issue drugs such as Procrit or Aranesp may boost his red cell counts and get more oxygen to his body.
WBC at 2.0 is pretty good. In my case my doc focuses on my ANC. If it gets to 500 he would start me on a drug such as Neupogen.
There are no drugs that will grow platelets at this time. There ar several trials underway with Lonafarnib. It is probably too soon the have any difinitive results.
Most of us with a low risk diagnosis play the waiting game. I have been waiting and watching for over 10 years. Others with intermediate to hih risk DX are generally more aggressive with their treatment. Age gets much consideration. Some of the drugs can have some nasty side effects. There are times when the side effects may be worse than the disease.
Diabetes seems to be independent of MDS. At least it is in my situation. I can control my glucose with diet, exercise and meds. Not quite the same with MDS.
I found the more I learned about my class of MDS and my particular situation the easier it has been to deal with.
At the beginning it was pretty scary, and I pretty well kept thing to myself. As time passed and with more and more knowledge I opened up more with my family. We seldom talk about MDS unless my counts start moving lower of some other issue presents itself.
If you can get him to open up a bit and discuss his feelings it could help.
Hello Jim Lucas
Welcome to the forum. This is a great place for support and information.
If I am understanding you correctly, your father’s doctor is Dr. Alan List. He couldn’t be in better hands, especially in regards to Revlimid. If I remember right, he did research and clinical trials with Revlimid. As far as your father’s symptoms, one thing you learn here is that everyone responds differently. I pulled the insert from the Revlimid package. I am sure you know that they have to report every side effect that was experienced. Some of them are renal impairment, blood and lymphatic system disorders, skin and subcutaneous tissue disorders, gastrointestinal disorders, diarrhea, pruitus, rash and fatigue. My husband has experienced constipation. His counts also went down and he had to be transfused. If your father has had this sudden weakness, he probably should call his doctor before next week.
I would take a list of all the symptoms your father is experiencing and go over each one with his doctor. The injections he is getting could possibly be Procrit or Aranesp to boost his red blood cells.
I hope that your father will open up to you with information, because there is a lot to be learned on the web. He may not have access to a computer or he may not feel well enough to do the research himself.
If you have his blood counts, blast counts, or bone marrow info, you could post those here. There are intelligent people on here that might have some insight for you.
Best wishes to you and your father. Keep us posted on his progress.
Hi Suzie Please don’t be discouraged. I’m 73, was DX 2001,MDS RA EB; had terrible blood work everything off the charts in Jan. 07, and was started on Dacogen stat. Have had 9 sessions, and I improved after each one. Had about 2 hrs of Dacogen for five days, sitting in a big chemo room with fifteen other patients, then three weeks off and start again. There must be something different about Bill’s blood that requires isolation. I did not have kidney problems. Did have about twelve rbc transfusions and some procrit and nupergen, but have not rec’d any thing except nupergen(for WBC replacement, and Dacogen since May. Dacogen has some side effects, but they can be treated, ask your Dr., Each month I have felt better as I take the Dacogen, and I hope Bill will also. Chemo nurses are wonderful, and can help with the claustrophobia. THinking of you, good luck and remain hopeful.
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annie-anne
Dear readers,
This is an update on my use of Exjade. I have seen that Exjade is a popular subject so thought I’d share my empirical experience of one. Thus, consider the following anecdotal, without scientific value.
I started Exjade in April, my Ferritin was 2750.
I am taking 2 grams/day, dissolved in h2o.
The Ferritin test 3 weeks later was 2150. A month later Ferritin was 2700. A month later, June 25, it was 2350. Kinda jumpin around, that Ferritin. My next Ferritin test is this Wed.
I have reported back to this group that I’ve had very minor side effects, a little nausea, that’s all.
The last 2 weeks of August I started feeling some discomfort in my tummy, left side kinda. No so much pain as a ‘full’ feeling. It was getting worse. I dont think I was eating very well and my general sense of well-being was declining. When I went in for a Procrit shot on Monday Aug 27, I told the nurses about my ‘feeling’. I did not hear back from my Doctor so I discontinued Exjade on that date. I also stopped taking all my supplements that I had been taking for over a year. A week has passed now and the ill feeling has mostly gone away. I assume it was the Exjade. But, but maybe it was the CoQ10 or the fish oil or the Epicor? Dont know. At any rate a serious side effect of Exjade is listed as renal failure and subsequent death. Not good. I’ll tell the nurses (they are the only ones who listen to me) on Wed that I’ve discontinued Exjade. Hopefully my Ferritin level will show more improvement this week.
Reading more about Exjade I’ve learned that Ferritin can only hold so much iron in blood plasma. When no more Ferritin can be produced in the blood, the iron gets incorporated into some nasty hydroxyl and oxygen radicals.
Radicals are bad. It is my understanding that consuming lots of antioxidants helps to neutralize the radicals. Having said this, I’m not sure that drinking lots of orange juice is going to reduce iron overload. Probably not.
The existence of a Ferritin limit also explains why Ferritin levels jump around after Exjade use is initiated. When Exjade robs Ferritin of it’s iron, Ferritin levels go down. But then more Ferritin can be formed from the iron floating around in the hydroxyl and oxygen radicals. Ferritin is recreated, readings quickly rise. Only when iron stored in the radical form is eliminated will Ferritin go down and stay down. Maybe that’s why my Ferritin went down 20% then quickly back up again. At least my Ferritin is not rising now.
Hope you found this of interest.
Jim
Hello,
Thanks again to everyone who posts on this website – Great support system and valuable knowledgebase.
My father was diagnosed with MDS in 2003. Had luck with Revlimid for a few years and since has recently completed his first round of Vidaza. No side effects. His hematocrit was at 20 today so he is getting a transfusion.
Has anyone had any luck with a supplemental drug to increase red blood count while taking Vidaza? What about Procrit in addition to? Other success stories to report?
Thank – Scott
