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Myelodisplastic Syndrome (MDS) to AML - treatment

Posts: 1
Joined: Sep 2005

My mother was diagnosed with MDS just under 2 years ago. It has since mutated into AML - she received one round of chemo and is in remission. I have a questions about the treatment she receives. She must get a nupagin shot "once in a while" - I think it's long lasting & a strong "dose" because they shots never had such a strong effect on her. Is there anyway, naturally, to lessen the bone aches she gets with the shots? Tylenol doesn't seem to help and they last for days.

mepfeiffer's picture
Posts: 3
Joined: Sep 2005

I would suggest she speak with her attending hemonc. I occasionally receive neupogen shots but they do not cause any discomfort other than during injection. From being in the healthcare profession, neupogen shouldn't cause too much discomfort within the bone. I'm sorry I'm not of much help--but do talk to her doctor to see what he suggests! Hope everything is okay!

Posts: 3
Joined: Mar 2009

One of the known side effects of Neupogen is bone pain. I've had it many times and always experience bone pain about 2 days after the shots. I am very fortunate to have a doctor who is not afraid of pain medicine. I've had great pain control since I was diagnosed with ovarian cancer in 2005. Was diagnosed with MDS 2 weeks ago. I've been through 3 rounds of chemo for the OC since 2005. I count my blessings everyday that I'm still alive since my OC was stage IV when diagnosed. My advise to the original poster is to talk to your doctor about better pain control. Oxycodone and morphine work great. You can take the morphine in a long acting, 12 hour pill form. It works great. I would caution you though that if you take these kinds of medications, you also ask for something to prevent constipation. You do not want to go down that road! :-) I hope this helps.

My thoughts and prayers go out to you and yours.

Posts: 1560
Joined: May 2006

Hi my dad was diagnosed several years ago with MDS. I am anxious to know about your moms chemo. What they used, how old she is, as my dad has just experienced AML and it seems to be rapidly affecting him. It is very hard to watch. Where did she get treated?

Posts: 10
Joined: Nov 2008

hi my grandfather was just diagnosed with this MDS and I'M so scared for him please help me understand what this is .he starts his treatments today keep him in your prayers please

Posts: 2
Joined: Mar 2009

It is very real and can be severe, don't let the doctors BS you I am am MDS/AML allogenic BMT survivor it is a real and was one of the worst part of the treatment along with bone marrow biopsy.

Posts: 1
Joined: Apr 2013

My mother was diagnosed last June with AML, treated with two rounds of Chemo and went into remission (sort of - she alsways had a few blasts so they could never be quite sure if she was in complete remission). Now it seems that she has MDS which they think she probably had for years (undiagnosed or rather misdiagnosed as anemia for about 6 years).  She has about 5% blasts and displasia seen in her bone marrow. She is almost 74 so she is not really a good candidate for a BMT. Has anyone experienced this or does anyone have any suggestions as to whom might have knowledge as to what can be done?

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