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MDS Myelodysplastic syndromes

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  #1  
Old Tue Jan 21, 2020, 05:05 PM
Mer Mer is offline
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Issues with Vidaza and Retacrit

Hello, my name is Mer and I am new to the group. I have been reading everything I can on these boards, since diagnosed with MDS RAEB2 in Nov. 2019. I had Vidaza I.V in November 7 days and a 5 week break. I needed a transfusion Nov 29. I had my second infusion in December and a transfusion on Dec 24th. After that infusion, My neutrophils dropped to .2 and in my Jan 13 visit, they did not show at all. On Jan 20 they went to .3, after transfusion, and i was put on a daily dose of Bactrim as a precaution for 30 days. I also get IM’s of Retacrit weekly but recently have begun itching terribly, Day and night. Benadryl does not seem to help. My Vidaza treatments have been deferred and I refused the Retacrit this week to see if the incessant itching will stop. My question is, has anyone experienced a problem with Retacrit and should I be overly worried about the neutropenia and delay of tx with my “not so good” prognosis? Sorry for the long post and I look forward to any answers.
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Mer, 77 yo f, patient; diagnosed MDS RAEB2, 12% blasts in Oct. 2019, currently on Vidaza, Retacrit, 2 completed tx, 3rd infusion at 50% due to low numbers at nadir, on prophylactic Bactrim for 0 neutrophils, Dx due to itching, monthly transfusions Nov,Dec. Feb #s at normal except for hg at 9.6...!
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  #2  
Old Tue Jan 21, 2020, 09:02 PM
Neil Cuadra Neil Cuadra is offline
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Mer,

Itching is a known side effect of Retacrit for some people. Has your physician considered other epoetin drugs that might not have the same side effect?

I think it's prudent to worry about low neutrophils. Do you know your Absolute Neutrophil Count (ANC)? That's the real measure of risk.

You might want to mark your calendar for November 7, when the MDS Foundation will be having a Patient Forum in Tampa. You could meet and talk to expert MDS doctors in person there.
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  #3  
Old Tue Jan 21, 2020, 09:10 PM
Sally C Sally C is offline
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Hi Mer,
I am so sorry for what you are going through.
I can't help you with specifics but I can give some insight on the neutrophils and possibly the itching.
When my husband's neutrophils went to 0.0 (due to Campath) our onc/hema gave me instructions as to what to do if he started running a fever. She wrote it on an Rx pad. I was to take him straight to the ER with his CBC to show them. I was to tell them the IV drugs they should start in the ER, summon the on-call hematologist and contact his doctor's office immediately. And with each instruction I was to tell them STAT. You'd be amazed at how they respond to that as they think you know what you're talking about. Very low or no neutrophils is a big deal. Sure enough that very night he started chills and fever. When it reached 100 we left for the ER and I was extremely calm because I knew what to do. They followed my every instruction and it saved his life.
Also he had a terrible time with itching and nothing helped. When he was at the NIH they had to give him an IV of Lorazepam (not a pill) which put him right to sleep. When he woke up the itching was completely gone. I don't know if there was something in the Lorazepam that stopped it or if it was understandable anxiety.
I hope this helps and I wish you all the best.
God Bless,
Sally
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Old Wed Jan 22, 2020, 10:05 AM
Mer Mer is offline
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Thank you Neil, No, I do not know my ANC . Th e percentage of neutrophils is 12.9. How would I find my ANC? As far as the procrit, my Onc office says they do not use Procrit anymore, also never heard of itching with Retacrit I have not been able to get appt to talk with Doc as he is “booked till March” so I have to query staff and they will “get back to me”, which they often don’t, or with incomplete answers. I am unable to get to Miami, which is the nearest Center of Excellence and unfortunately, cancer is a big business here in So Fl, hence the inability to see your doc for 2 months.
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Mer, 77 yo f, patient; diagnosed MDS RAEB2, 12% blasts in Oct. 2019, currently on Vidaza, Retacrit, 2 completed tx, 3rd infusion at 50% due to low numbers at nadir, on prophylactic Bactrim for 0 neutrophils, Dx due to itching, monthly transfusions Nov,Dec. Feb #s at normal except for hg at 9.6...!
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  #5  
Old Wed Jan 22, 2020, 10:17 AM
Mer Mer is offline
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Sally, thank you. I have written your instructions down. I find it interesting that my onc or the “office” didn’t give me instructions on what to do if I started to run a fever, except to go to the hospital. I should have asked, and now will. What meds did you say to give him in the ER? I sound pretty ignorant but I have had little illness in my 77 years and this is all new to me. New and pretty scary btw. I appreciate your time answering me. I have some XANAX, it might be time to take it
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Mer, 77 yo f, patient; diagnosed MDS RAEB2, 12% blasts in Oct. 2019, currently on Vidaza, Retacrit, 2 completed tx, 3rd infusion at 50% due to low numbers at nadir, on prophylactic Bactrim for 0 neutrophils, Dx due to itching, monthly transfusions Nov,Dec. Feb #s at normal except for hg at 9.6...!
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  #6  
Old Wed Jan 22, 2020, 04:11 PM
Sally C Sally C is offline
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Hi Mer,
This was in 2009 and I don't remember exactly what IV's they gave Don but I am going to guess it was anti-bacterials. I do know they put him on 24/7 IV's for 2 weeks in the hospital then sent him home with a picc line for me to give additional meds for another 2 weeks.
As far as the Xanax goes - whatever it takes is my philosophy. You are going through a very difficult time. Helping you with the stress and helping you rest I would think would be very beneficial.
Take good care and I wish you well. Please keep us posted.
Sally
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  #7  
Old Wed Jan 22, 2020, 06:43 PM
Mer Mer is offline
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Thank you Sally. I will keep you updated. It is good to talk with those that have been or are going through this weird disease. So many questions and just the ability to vent is so helpful. My husband has the burden of taking care of me and our 14 year old grandson. I used to take gson to classes and wait for him and take him to park all day one day a week to spend time with his friends. Now, I am lucky to have enough energy to take a shower. My daughter, gson’s mother, died of breast cancer 4 years ago. We have had full care of him since she was diagnosed when he was 6. I have to do what I can to keep a positive face for both of them, even tho I am scared to death. So, thankful for this forum.
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Mer, 77 yo f, patient; diagnosed MDS RAEB2, 12% blasts in Oct. 2019, currently on Vidaza, Retacrit, 2 completed tx, 3rd infusion at 50% due to low numbers at nadir, on prophylactic Bactrim for 0 neutrophils, Dx due to itching, monthly transfusions Nov,Dec. Feb #s at normal except for hg at 9.6...!
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  #8  
Old Wed Jan 22, 2020, 09:36 PM
Sally C Sally C is offline
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How very tragic about your daughter and how Blessed her son is. You and your husband have had and are having more than anyone should have to deal with. Venting helps. I don't know if you are a person of faith but if so, the book Jesus Calling by Sarah Young has gotten my husband and I through many trials. It's a daily devotional. If you decide to get it get the large version with the passages at the end. Please feel free to send me an e-mail if there is any more information I can try to help you with - or vent. shcalvert3@aol.com And I'm sure your journey will help others on the forum.
Take good care,
Sally
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  #9  
Old Sat Feb 1, 2020, 10:50 AM
Mer Mer is offline
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Update on itching

Well, the itching continues and so it was not the Retacrit. We then decided to stop the prophylactic Bactrim and it seemed to offer some relief, though itching at night was horrible. I am taking Benadryl every 4 hours and Xanax .25 at bedtime, still needing to take it again about 2 a.m. After some thinking we realized that my husband changed detergents 2 to 3 weeks ago, so now in the process of returning to old detergent and rewashing everything. On a good note, tho neutrophils only went to .6,Vidaza was restarted this week at 50% and Retacrit was restarted. platelets dropped a bit to 117 but hg stayed at 9.2. So, I have had much more energy this past two weeks and thinking positively again, even as I continue to itch! Hoping the numbers don’t bottom out in the next two weeks, as I really dislike the transfusions.
Positive energy and light to all dealing with this nasty disease.
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Mer, 77 yo f, patient; diagnosed MDS RAEB2, 12% blasts in Oct. 2019, currently on Vidaza, Retacrit, 2 completed tx, 3rd infusion at 50% due to low numbers at nadir, on prophylactic Bactrim for 0 neutrophils, Dx due to itching, monthly transfusions Nov,Dec. Feb #s at normal except for hg at 9.6...!
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  #10  
Old Wed Apr 29, 2020, 04:08 PM
Mer Mer is offline
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Itching under control but ? Vidaza efficacy

A little update here. The itching got more under control after the end of the Bactrim order. I was doing fairly well with my numbers and had even gotten to 11 on my hgb, 145k in platelets, tho neutrophils only stayed in upper neutropenia stage. I had 3 rounds of Vidaza I. V. then 4 th round was at 50%, i was placed on Bactrim again for low wbc, for 10 days. the next round of Vidaza was going to be 5 days. It has been 9 weeks since my last Vidaza and yesterday was my first time back for 2 units of blood since Jan 15. My numbers before the transfusion were: anc 383, hgb 7.6, platelets steady at 25k (on 3/23 they were 134k). Oncologist meets Monday and is supposed to suggest another bmb and plans to resume Vidaza for 5 days starting Mon at 50%. I have serious doubts about wanting to have TX if numbers are as low on Mon. and I think it would take a miracle for them to improve by then. I question if the Vidaza is not working...then why am I going through this? Should I try to get a consult at Miami (Difficult to get to but not impossible).Will they want their own bmb? Is it time to see if there are any trials? I know this is long and windy, but if you have any knowledge or advice I would love to hear it. Ty for listening.
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Mer, 77 yo f, patient; diagnosed MDS RAEB2, 12% blasts in Oct. 2019, currently on Vidaza, Retacrit, 2 completed tx, 3rd infusion at 50% due to low numbers at nadir, on prophylactic Bactrim for 0 neutrophils, Dx due to itching, monthly transfusions Nov,Dec. Feb #s at normal except for hg at 9.6...!
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  #11  
Old Tue May 12, 2020, 07:13 PM
Mer Mer is offline
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Updating, Back to square one?

Well, not sure if I am posting in the right place, as I had no suggestions on my last post. I met with my oncologist and my numbers were just as bad. He suggested that it is every Doc’s dilemma trying to decide whether to withhold Vidaza when numbers are so low. He then said the worst that could happen if I resumed would be that I would need transfusions. So, I had the 50% Vidaza for 5 days. He decided that the Retacrit was not working, so that was discontinued for now. The Monday after end of treatment my ANC was at 202, platelets still at 25k, hemoglobin dropped to 7. Had two units of cells today. I read somewhere here that if you stop Vidaza for a long period of time, it is like starting over. It sure feels like it. So we will see what happens in the next couple of weeks and I guess do another bmb to see where we are. I still have two questions that I hope someone can give me info on.
1. If Retacrit doesn’t work has anyone tried Procrit?
2. If this has transformed to AML do we just continue on Vidaza anyway...or add something?
Thanks for your time in reading.
Mer
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Mer, 77 yo f, patient; diagnosed MDS RAEB2, 12% blasts in Oct. 2019, currently on Vidaza, Retacrit, 2 completed tx, 3rd infusion at 50% due to low numbers at nadir, on prophylactic Bactrim for 0 neutrophils, Dx due to itching, monthly transfusions Nov,Dec. Feb #s at normal except for hg at 9.6...!
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  #12  
Old Yesterday, 01:10 AM
maggiemag maggiemag is offline
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Hi there. I posted a long reply to this message a couple of days ago, but I don’t see it! I know I hit “post”.
At any rate, I looked into Retacrit, since I am now on it bc I became transfusion dependent while on Arenesp, another RBC growth factor. It seems that Retacrit is a “biosimilar “ drug To Procrit. That means that “ it is highly similar to a biological that is already approved “, and “ has no clinically meaningful differences in terms of safety, purity and potency from the reference product”. Also cheaper!
So you could ask your physician about the Arenesp, which is a different growth factor.
As far as your other question, it is my understanding that Vidaza can take 6 months to work. As you know side effects include drops in your counts, so a BMB seems reasonable to me to look at disease progression. What drugs your physician might use for AML is something to ask them. I understand that there are some new effective ones out there now.
So, hope this helps a little, and I’m sorry you had no other replies.
Keep us posted!
Mags
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