When to start treatment?
 

My father needs 2units of blood transfusion every 2-3months. His hemoglobin before transfusion remains at around 7.1 . He is able to do his regular activity at 7.1 but the doctor is suggesting us to start with Dacogen. We are scared about these medicines and would want to know whether we continue with transfusions or go with what doctor is suggesting? I am not sure if the side effect of transfusions are worst than that of dacogen? What's the success rate of dacogen for low risk patients? Waiting for your suggestions.

Dacogen
 

Hi Vikasgoyal,
Most doctors treat low risk MDS with supportive therapy.

I have not been able to find any studies about Dacogen for low risk MDS patients but studies of Vidaza show that low risk patients can have decreased overall survival after treatment with Vidaza.
https://ash.confex.com/ash/2012/webp...aper52209.html

As far as I understand your father is doing OK with the treatment he is getting now. His HGB is maybe too low so he should have more frequent transfusions. Is he not getting any iron chelation drug?
Kind regards
Birgitta-A

Hi Brigitta,

Thanks for the response. He is taking wheatgrass on a regular basis but hasnt started any Iron chelation therapy yet. I read somewhere iron chelation drugs might help imrpove the blood count, is that true? Secondly, for how long can one continue taking regular transfusions ?

Vikas

Hi Vikas,

Just wondering how is your father WBC, platelet and other blood test results ?

As you mentioned that your father hemoglobin before transfusion remains at around 7.1, is that mean if he doesnt go for BT, it will always stayed at around that levels ?

I am curious about your father symptoms as it looks quite similar to my mom's symptom besides not knowing what is your father other blood test results.

My mother has low Hg, the lowest was 5.05 two months back (The rest of the blood test results looks okie) and she needs 2 units of blood every month. When she was on 5.05, she still feeling okie besides complaining soreness on her legs. This month her Hg is pretty good, back to 6.67 before BT. I dont know why it was fluctuate so much but anyway we feel good to see the number increase back up.

Currently she is on wheatgrass (Started 2 months ago), sunchlorella (Supplement), EPO and Ferriprox (Iron Chelation Drugs).

If you have the answer about why the doctor wants your father to try Dacogen, please do share with me. I am interested. Thanks in advance.

Hi Teo,

His WBC & Platelets have been pretty stable throughout. Concern has always been the low hemoglobin. If i remember correct his last WBC was 4 and platelets 400000. Does your mom feel ok at the levels of around 7/8? Is she on iron chelation? Whats the doctor suggesting in your mom's case?

Vikas

Teo i missed you already mentioned your mom is on iron chelation drug. Question is whether the iron chelation helps improve blood counts? Secondly, are there too many side effects of the iron chelation drug?

Vikas,
I don't know what is normal for whites and platelets. But if Hg is the only problem, have they considered Pure Red Cell Aplasia.

teo,
I have mentioned this to you before.

Iron chelation
 

Hi Vikasgoyal,
All iron chelating drug are can increase HGB - I have tried Desferal, Ferriprox and Exjade. They all increased HGB for some months. Ferriprox and Exjade decreased my WBC but I tolerate Desferal (intravenous infusion).
http://www.ncbi.nlm.nih.gov/pubmed/21185078

Many MDS patients get transfusions during many years - I have red posts from members of this forum who have received many transfusions. I have received 147 units of packed red blood cells myself since 2006.

Remember that a man often needs a higher HGB than a woman - a very low HGB is bad for the heart and will decrease overall survival.
Kind regards
Birgitta-A

Hi Vikas,
It is quite similar based on the platelet, WBC and HGB results. My mother BMT has Inadequate sample for interpretation, so no conclusive answer what kind of aneamia she has at the moment. So just supportive therapy and EPO.

For my mother, even with HGB on lowest 2 months back at 5.05, she is still feeling alright besides soreness of the legs. But as Birgitta-A mentioned, a very low HGB is bad for the heart and will decrease overall survival. Actually we are shock/worry at the time when we see 5.05 after her blood test as she doesnt complained at all and she gets her BT the day after :).

Hi triumphe64,

Yeah i asked the hema about this but the hema says the final results should be coming from the BMB results. As my mother BMT sample is not adequate for interpretation, so he doesnt say whether my mother has MDS or PRCA or AA or etc but in my mother profile, they still put MDS :)

Have a good weekend to everyone in the forum.

isn't the iron chelitan for too much iron in the blood? fortunately my dad never got iron overload. He did have rcmd. I think maybe more frequent blood transfusions on your dad may get his counts up or maybe even arenesp.

Hi vikasgoyal
 

My mom had high risk mds. She didn't get any drug till her last month. she lived two years without drug, just with blood transfusions. When she got dacgoen, her immunsystem decreased and then she had pneumonia, after pneumonia unfortunataly she passed away.

When she died the doctor told me that normally if dacogen works for a patient , it will be maximum for a year.

So, I mean dacogen isn't real solution for mds or aml. This drug had a lof sideeffects too. But there are only two drugs for mds. Dacogen and Vidaza. It's really hard situation to choose the best way. Because there is no best way.

If your father has low risk mds, ı recommend to you supportive therapy with iron celetion. I can tell from my experience, Dacogen must be last alternative.

Thanks everyone for your response. Yes after reading stuff about Dacogen i was not feeling comfortable hence turned over to you guys. I agree with you all that the best treatment for low risk mds is to be on supportive care. It does not make sense to paralyze the quality of life. Arnesp does not seem to work on my dad since the begining but the doctor is still insisting to be on it. His thinking is that if it is not increasing that HB then maybe it might be helping in delaying the raid fall. I am not sure whether we need to continue with it? Secondly if Dad feels good at 7.1 do we still go for frequent transfusions or can have more gaps in between? Although I do understand that even low hb can cause issues but was a bit reluctant to get too many transfusions. One of the theories i have learnt is that more transfusions you take the body gets more dependent on it and it stops doing its own work. Is that true? How many years can one live with supportive care? Do you guys think there is medicine coming soon with good potential?

These are few questions that keep bothering me. Will be glad to see your response.

Low risk MDS
 

Hi Vikasgoyal,
Aranesp and other EPO drugs that should stimulate the bone marrow to make red blood cells is best for patients with low EPO initially (less than 500 - I had 800 and have never received EPO drugs). Our kidneys make EPO.

Then the drug is best for patients like your father who do not need many transfusions.

Aranesp could be combined with Neulasta or similar drugs for white blood cells for better effect: http://www.ncbi.nlm.nih.gov/pubmed/18559873

Do you know your father's EPO value initially?

As far as I understand it is OK to give so much transfusions the patient needs. In Sweden they often try to keep the HGB about 100 because that gives best quality of life and not more transfusions.

I was transfusion dependent from dx 2006 with a HGB of 70. I received supportive therapy until 2010 when I accepted a very low dose of Thalidomide + Prednisone and had a very positive response. My HGB slowly increased to 137. After 32 months the HGB was 88 and I have now started with thansfusions again. About 30 % of the patients respond to Thalodomide and the median response is 9 months. Revlimid doesn't give neuropathy and is now a more common drug for MDS than Thalidomide.

There are members of this forum that have lived very long with supportive therapy.

The best results I have seen are from trials with combinations of drugs for example Vidaza and different drugs like Revlimid or Zolinza.

Kind regards
Birgitta-A

Arnesp never worked for my dad. He started it by using it along with GCSF but he had immense leg pain and he quit using GCSF. Interestingly i watched a presentation by Dr Sekers and he mentions that he isint very sure whether using Iron chelation helps a lot comparing it with their side effects.

Iron chelation
 

Hi Vikasgoyal,
We still don't know enough about iron chelation in MDS patients. In Sweden the more than 40 years old drug Desferal given intravenously for 4 days from a small homepump is common. I have received 57 Desferal infusions without any adverse effects.

Exjade is a pill and easy to take but gives much more adverse effects.
https://ash.confex.com/ash/2012/webp...aper51991.html
Kind regards
Birgitta-A

My wife is on dacogen since november 2012, we have been getting 2 bags of blood per week for 3 months, we havent had any complications from transfussions yet from blood, platlets are a different story.You do what u do til you get a remission or what your on stops working and then you try somthing else, but supportive care works if your rbc is low or platelets, we are also on Amicor for platelets, we just ride out the low wbc, as far as dacogen, its controling the AML, and she is very high risk....we are happy about the results were getting.....Billy

Definition of transfusion dependency?
 

What frequency of transfusion is termed as being "Transfusion Dependent" ? If a person is feeling normal even at hgb 7 can he avoid taking transfusions?

Ask your doc why he wants you to start decitibane, it could be that your blasts are riseing and starting to build up in the marrow and possible spill out into the blood and the decitibane could control the mds so the bone marrow can do what it is supposed to do, and there not wanting that to happen ....there is a reason for them to want to start some kind of treatment, transfussions every couple months is a good trade off instead of other complcations that can araise from low blood counts, what you dont want is low risk mds to turn into high risk mds or aml, dont be scared to ask you doctor what his experience has been with other patients and the sucesses with the treatment plan they are suggesting, we have even went as far as recording some of our coversations with the doctor so we can go back and listen to it because sometimes it is hard to understand thier lingo

Anemia and heart
 

Hi vikasgoyal,
Patients that are transfusion dependent need 2 units of PRBC (packed red blood cells) during 8 weeks.

As I have written before a HGB of 7 is too low for a man.
"The link between anemia and heart disease is clear: Up to 48 percent of people who have had heart failure are anemic. And of people hospitalized for a heart attack, 43 percent were found to have anemia. People who are anemic are at a 41-percent greater risk of having a heart attack or needing procedures to treat heart disease as compared to those without anemia."
http://www.everydayhealth.com/heart-health/anemia.aspx

It is dangerous to try to reduce transfusions because you don't want to be transfusion dependent. Even if your father says that he feels OK his heart is working too hard.
Kind regards
Birgitta-A

Thanks for the info