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MDS Myelodysplastic syndromes

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  #1  
Old Sat Sep 14, 2013, 01:35 PM
teo teo is offline
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EPO worries

Hi All,

I have a question about the EPO, as my mom has the EPO 2000*3/Week, so far has been around 10 months. I dont know whether it helps on her situation or not but she did put on weight so far (maybe 6 or 7 kg, from 46kg to 53kg), possible side effects that i heard of /found in the web. Her Hgb seems improved a bit for the past few months. Just wondering should i asked the hema to stop the EPO for observation as my mom is worry about putting too much weight ? Any suggestions are most welcome! Thanks.

My mom also taking supplements (Aojiru and Sun Chorela), so i am not sure whether the supplements did help her Hgb or actually the EPO did.

My mom has her 4th BMB last month, according to the hema, same results as the 2nd and 3rd time, no conclusive evidence of MDS. I will try to get the report and post it here later on.
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Teo, son to Goh, age 71 dx mightbe MDS with low HB & RBC Jan 2012; FE 7755 on Nov 2014 - 6*500mg ferriprox; BT every month since Feb 2012; BMB done July 2013 - no conclusive evidence of MDS or PRCA; EPO stopped Nov 2013; Danazol 200mg*2 starts Nov 2013 + cyclosporine 25mg*4 starts June 2015
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  #2  
Old Sat Sep 14, 2013, 03:08 PM
Mseth Mseth is offline
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Response to EPO

Hello Teo,

I am sorry I do not have any advice to give you, as I am new to the forum and this dreaded MDS . But I hope you will be able to help me with my questions on EPO.
My mother was given EPO(Eprix) 40,000 weekly for 8 weeks. Doc discontinued saying there was no benefit to her as her transfusion interval did not go up. We do not know her base Hb, so the benefit could only be seen by increased transfusion interval which did not happen. When the Hb goes below 7, she gets 2 units.
I am glad your mother responded to EPO. Did her base Hb go up or transfusion interval go up? How long did she get EPO before seeing benefit?
Your mothers dose of 2000*3 times=6,000 weekly is much lower than my mothers dose of 40,000 weekly, are we talking of the same EPO or different forms ?
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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  #3  
Old Sat Sep 14, 2013, 04:01 PM
Birgitta-A Birgitta-A is offline
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EPO

Hi Teo,
You know with MDS - a cancer disease - very few patients worry about putting on weight. Good that your mother's HBG has increased either it depends on EPO or supplements .

Tell her that we all can fight symptoms like infections and other complications better if we eat well. You don't have to tell her that many of us will have serious problems to keep our weight when our disese is getting more severe.

It will be interesting to see the result from the latest BMB.
Kind regards
Birgitta-A
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  #4  
Old Sat Sep 14, 2013, 04:11 PM
Mseth Mseth is offline
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Hi Birgitta,

Would you be able to advise on the median time for response to EPO? My mothers doc discontinued after 8 weeks, saying no benefit. Her initial EPO level was 126, and she received 40,000 weekly for 8 weeks. As her treatment options are very limited, I am going to talk to the doctor once again about restarting, maybe at a higher dose. He also says there is no point adding GcSf as her white cell counts are fine whereas i have read that adding Gcsf improves the response. I am always confused.

Thanks.
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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  #5  
Old Sun Sep 15, 2013, 01:43 PM
teo teo is offline
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Hi Mseth,

I think we are talking about the same EPO (erythropoietin). My mom hema actually reluctant to give her the EPO as it is very expensive. I insisted and finally the hema gave in but with very very low dosage. According to my mom weight, for sure she needs a lot lot more than 2000*3/ week. Anyway better than having nothing, that's what i think.

About your question how long, i have no answer for you. What i read so far from the forum is, it was all depends to individual, some might response in short time, some might response in longer period of time, some might not response to it at all.

For my mom case, i dont even know whether it was EPO itself helping the Hgb or other factors, supplements that i mentioned.

My mom now only get 1 pack of blood every 3 weeks as the doctor in our local hospital telling us that there were not enough blood. So far, this has been done for the past 6 weeks and the Hb still maintained at around 7 and higher. We still hope the local hospital can provide my mom with 2 pack /month.
__________________
Teo, son to Goh, age 71 dx mightbe MDS with low HB & RBC Jan 2012; FE 7755 on Nov 2014 - 6*500mg ferriprox; BT every month since Feb 2012; BMB done July 2013 - no conclusive evidence of MDS or PRCA; EPO stopped Nov 2013; Danazol 200mg*2 starts Nov 2013 + cyclosporine 25mg*4 starts June 2015
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  #6  
Old Sun Sep 15, 2013, 02:02 PM
teo teo is offline
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EPO

Hi Birgitta-A,

Glad to hear from you! I always appreciate your kind feedback and all the good and informative suggestions. Thanks.

FYI, actually i did not logged in to this forum for few months as i have a big arguments with my sister . Just that we have different opinions and ways on how we should handled my mom sickness.

I will post my mom 4th BMB here when i get it.

cheers
teo
__________________
Teo, son to Goh, age 71 dx mightbe MDS with low HB & RBC Jan 2012; FE 7755 on Nov 2014 - 6*500mg ferriprox; BT every month since Feb 2012; BMB done July 2013 - no conclusive evidence of MDS or PRCA; EPO stopped Nov 2013; Danazol 200mg*2 starts Nov 2013 + cyclosporine 25mg*4 starts June 2015
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  #7  
Old Mon Sep 16, 2013, 02:14 PM
Mseth Mseth is offline
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EPO and other supplements

Hi Teo,

Yes EPO is very expensive.

My mother also takes many supplements, B-12, curcumin, probiotic, CoQ10 and IP6. She also takes fresh wheatgrass juice (similar benefits as Sun Chorella). This time 2 units of blood has seen her through 4 weeks instead of ususal 17-18 days. Hope this trend continues as she dislikes her visits to the hospital so often, even though they have a nice cheerful day care facility.

Wish your mother the very best.
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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  #8  
Old Sun Sep 22, 2013, 07:25 AM
Birgitta-A Birgitta-A is offline
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EPO

Hi Mseth,
Sorry for the late answer - I am having problems with my pc .

If you read the programme from the Nordic MDS Group (page 18-) about EPO you will find that they (professor Eva Hellström-Lindberg, a very well known MDS researcher) recommend:

1 Start with EPO 30 000 U/week during 8 weeks - 60 000U/week if the patient is transfusion dependent.

2 If the patient isn't responding add Neupogen or a similar drug (stimulates the bone marrow to make white blood cells) for another 8 weeks. If no response the treatment should be terminated.

The combination EPO and Neupogen or similar drugs for better response is well known since many years and has nothing to do with the patient's white blood cell count.
Kind regards
Birgitta-A
74 yo, dx MDS Interm-1 2006. My own EPO was more than 800 initially so I never tried EPO. Positive response with Thalidomide + Prednisone during 2010-2013. Now trying Revlimid + Prednisone.
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  #9  
Old Sun Sep 22, 2013, 04:29 PM
Mseth Mseth is offline
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Hi Birgitta-A,

Thanks for your reply and for the Nordic MDS group. You always have good information. I have also read about EPO + G-CSF(same as neupogen, I think) improves chances of response. But the doctor insists that theoretical information and practical experience is different and that my mother does not need G-CSF. Since EPO is the only treatment that she can get, I think the doctor should give it another try, with Neupogen, I hope I can convince him. I will carry a copy of this information to our next appointment.

Thanks v much
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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  #10  
Old Mon Sep 23, 2013, 05:08 AM
Birgitta-A Birgitta-A is offline
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EPO and Neupogen

Hi Mseth,
I don't think your mother's doctor has more practical experience than for example professor Hellström Lindberg who has been working with MDS patients during many years. http://www.ncbi.nlm.nih.gov/pubmed/18559873.

You could tell him that he could increase his MDS treating experience and give the EPO + Neupogen (or a similar drug) a chance.
Kind regards
Birgitta-A
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  #11  
Old Mon Sep 23, 2013, 12:12 PM
Mseth Mseth is offline
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Quote:
Originally Posted by Birgitta-A View Post
Hi Mseth,
I don't think your mother's doctor has more practical experience than for example professor Hellström Lindberg who has been working with MDS patients during many years. http://www.ncbi.nlm.nih.gov/pubmed/18559873.

You could tell him that he could increase his MDS treating experience and give the EPO + Neupogen (or a similar drug) a chance.
Kind regards
Birgitta-A
Hi Birgitta-A,
Thanks for the link. While going through the study, I came across another study on pubmed, though done in 2001 :http://www.ncbi.nlm.nih.gov/pubmed/11146570
which shows that response in transfusion dependent patients, even with G-cSF addition is low and chances of transforming into AML high. I dont know, but maybe this is what the doctor fears. Nevertheless, I will go equipped with copies of all studies and ask him why he will not give it a try.

Thanks v much.
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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  #12  
Old Mon Sep 23, 2013, 03:14 PM
Birgitta-A Birgitta-A is offline
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Neupogen

Hi Mseth,
You know the studies about increased risk for AML are older and now Neupogen and similar drugs are recommended for MDS patiens.

I have been taking Neupogen mostly once a week (but never EPO) 2007 - 2011. 2007 I had neutropenic fever after three infections. 2011 my WBC were normal after Thalidomide treatment.

Now I am taking Zarzio (Neupogen) again since the spring 2013 because my WBC didn't like that we increased Thalidomide from 50 mg 4 times a week to 50 mg 7 days/week. That dose increased my platelets to 180 (very high for me) bur not my HGB so now I am trying Revlimid.
Kind regards
Birgitta-A
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  #13  
Old Tue Sep 24, 2013, 05:51 AM
Mseth Mseth is offline
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Side effects - Neupogen & others

Hi Birgitta-A, you are very courageous to try so many different drugs, and its great that they work for you. When Thalidomide worked for you, did you have to continue to take it for the years it worked? And now will you continue with Revlimid, if its helping your Hb? My question is that is the drug ongoing or can it be discontinued once the Hb levels go up? Do you expereince discomfort/side effects etc? Even on Neupogen?
My mother had no visible side effects with EPO, but Lenalidomide gave her nausea, acidity & leg cramps.
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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  #14  
Old Tue Sep 24, 2013, 09:03 AM
Birgitta-A Birgitta-A is offline
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Thalidomide and Revlimid

Hi Mseth,
You know the first 4 years (2006-2010) I had MDS I only accepted supportive care because I am so afraid of adverse effects.

June 2010 I had to receive blood txs every week, my ferritin value increased and my dysfunctional platelets were only 22. I was afraid of having a stroke so I accepted to try Thalidomide with very good response. My HGB slowly increased to 13.7 and I didn't need transfusions. (I had been transfusion dependent since dx). I have neuropathy but that started before Thalidomide treatment.

I never thought I could stop treatment because there is no cure for MDS patiens (yet) except SCT and I was too old for that treatment at dx (in Sweden).

Then my HGB slowly decreased and July 2013 I started to take Revlimid + Prednisone. I still don't know if Revlimid is working for me because I take Prednisone 10 mg/day.

I feel OK as I have done since dx - I have only felt ill once and that was when I hade neutropenic fever (almost sepsis) 2007. After a few hours with antibiotics I felt fine again.
Kind regards
Birgitta-A
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  #15  
Old Wed Sep 25, 2013, 07:44 AM
Mseth Mseth is offline
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Chelation

Hi Birgitta-A,

Yes, its the adverse effects that worry, even of Hb corrects, will any new problem occur due to the medicine, or what if neither the Hb corrects, yet some other adverse effect occurs. Its great you did not have to face anything major except the fever, but it must have been a worry.!!
Were you on chelation during your tx dependent period? How was the decision to start taken? I understand Ferritin is not the most reliable indicator, my mothers ferritin was 980 before even the first transfusion, shot upto 2100 after 4 units and then started to come down. In India, we can order lab tests on our own, so we tested Ferritin a few times but the doctor did not seem interested. The doctor said he would suggest when to start Ferritin testing, he does not want to track now. Chelation he said could start after about 20-25 units, but I read that some other tests shud be performed like an MRI etc before decision is taken. She has already had 16 units since dx and may be approaching the time for start of chelation therapy. She has been taking IP6 supplement, hope it helps to some extent. Any experience and information you and any others on the forum can share will be greatly appreciated. Thanks in advance.

I am also wondering if i should start another thread as this thread was originally for EPO? I did not find other threads on iron overload giving this information
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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  #16  
Old Thu Sep 26, 2013, 05:36 PM
Birgitta-A Birgitta-A is offline
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Iron

Hi Mseth,
It is common that MDS patients have increased ferritin at dx.

I have been on chelating drugs most of the 7 years since dx. After 40 units of blood I started to receive Desferal from a home pump to my port-a-cath during 4 days in connection with txs.

I have controlled my liver and heart once with MRI but that was several years ago - I had not a trace of iron in my heart.

I tried Ferriprox + Desferal but my WBC didn't like Ferriprox. Then we tried Exjade + Desferal. My WBC could only tolerate a low dose Exjade.

Now I am receiving Desferal again in connection with txs - Desferal isn't giving me any adverse effects.

I dare not take IP6 or wheatgrass juice because I am afraid of adverse effects.

You could post at "Transfusions" - there have been many posts about iron overload.
Kind regards
Birgitta-A
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  #17  
Old Sat Sep 28, 2013, 05:09 AM
Mseth Mseth is offline
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Hi Birgitta-A,

Thanks for all the valuable information and your experience with chelation.

Kind Regards.
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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