Myelodysplastic Syndrome (MDS)

Posted by jaylevel1 @jaylevel1, Nov 16, 2018

is there a natural alternative that has shown success in promoting more red blood cells. Currently I am receiving shots of Vidaza but not helping at all. I did better when I had a port but my body rejected it, so now I gt the shots in the back of my arm in the muscle. Strong dosed of vitamin b12 don’t help either. With the port I was holding 11 12 easy in red blood cell counts. Normal range in males is 13 to 18. But anything over 10 is great. With the shots I can’t break 9 and just had to have a transfusion when my blood counts dropped to 7.2 I don’t have cancer but there is risk at that low of having it set in. I was just looking to see if anyone that has this have other suggestions to try. I’ve bought and tried Prohemia which promises increases of red blood cells but I’ve tried it for a couple of months with no improvement in counts.

Hello @jaylevel1, welcome to Connect. It is my understanding, and I am not a medical professional, that Vidaza is a medication that is supposed to help red blood cells mature. If you don't mind sharing, has your provider discussed taking any other medications that are prescribed for MDS that are meant to stimulate growth of red blood cells [epoetin alfa (Epogen, Procrit) or darbepoetin alfa (Aranesp)]? Here is a little more information from Mayo Clinic, https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/diagnosis-treatment/drc-20366980. I'd like to invite @reibur1951 to this discussion as they have discussed MDS in-depth and may have some insight on the disease to share. You can also read some of rebur1951's posts here, https://connect.mayoclinic.org/discussion/melodysplastic-syndrome-unspecified-myelofibroisis-1/.

@jaylevel1, how are you feeling with this disease? Many people talk a bout experiencing fatigue, are you finding this to be true?

REPLY
@JustinMcClanahan

Hello @jaylevel1, welcome to Connect. It is my understanding, and I am not a medical professional, that Vidaza is a medication that is supposed to help red blood cells mature. If you don't mind sharing, has your provider discussed taking any other medications that are prescribed for MDS that are meant to stimulate growth of red blood cells [epoetin alfa (Epogen, Procrit) or darbepoetin alfa (Aranesp)]? Here is a little more information from Mayo Clinic, https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/diagnosis-treatment/drc-20366980. I'd like to invite @reibur1951 to this discussion as they have discussed MDS in-depth and may have some insight on the disease to share. You can also read some of rebur1951's posts here, https://connect.mayoclinic.org/discussion/melodysplastic-syndrome-unspecified-myelofibroisis-1/.

@jaylevel1, how are you feeling with this disease? Many people talk a bout experiencing fatigue, are you finding this to be true?

Jump to this post

A week ago I had to have a transfusion. 2 units. My red blood count fell to 7.2. A year ago I had another transfusion for much of the same reason. I had 2 different ports put in over 3 years cause they kept getting infected. Now I have none and recieve the Vidaza in the form of shots. In addition I get a shot of arnies (sp?). My red blood counts dropped real fast and a little over a year ago I had my 2nd bone marrow biopsi. Results came back negitive nothing abnormal. My hemotoligist said the results were great and continue with the shots. I believe he said It came back as less than 2 percent, whatever that means. Prior to a year ago I was doing great red blood cell counrs were 11 to 12.5. But a year ago I had a transfusion and they put it through my port and because it was still infected I went into septic shock and had to be rushed upstairs at the hospital where I was getting the transfusion. Thankfully I survived fully and within a week in the hospital I was fully recovered. I get my blood checked ever two weeks and although my numbers are not where I'd like my white blood cells, plattelets lymphnods are all great. I have high iron but thats because of the transfusion. I'm told it takes a long time for it to get back down.

REPLY

I am interested in talking to anyone who has went thru this and results,what to expect .

REPLY
@cybears

I am interested in talking to anyone who has went thru this and results,what to expect .

Jump to this post

Hello @cybears, welcome to Connect. I moved you discussion and combined it with an existing one titled Myelodysplastic Syndrome (MDS). You also had asked about bone marrow transplant. I would like to share with you another conversation on Mayo Clinic Connect that is titled "Bone marrow transplant support thread," https://connect.mayoclinic.org/discussion/would-like-a-stem-cell-transplant-support-thread/. That may be another conversation to click on, read through, and participate where you feel comfortable.

@cybears, if you don't mind and are comfortable sharing, how are you doing with your MDS diagnosis?

REPLY

I am doing well, fatigue when I exercise climb stairs etc. but have felt better recently,Drs started me on B 12 and my last hemoglobin level was 13.1,had been 11/12 range.My delima is the Drs feel I should have a Boone marrow transplant sooner than later,and have a non family match from the Be the Match registry . But after meeting with counselor s etc.,the length of the process, possible complications, financial repercussions have me questioning whether to do it now or continue to monitor and wait?

REPLY

I have been doing very well with Procrit shots every 4-5 months, in a series of 4 or 5 weekly injections. Then when my red count goes down I start the injections again. I was once told by a good dermatologist that my all-over itchy skin is part of my myelodysplastic syndrome. It's very disturbing trying to control the itching. Anyone out there have this condition?? @

REPLY
@jaylevel1

Does anyone have this blood disorder? Vidaza is the only treatment I know of. I take it in shot form because my body has rejected 2 different ports. But when I had my ports my red blood cell count was always around 11.5 and 12 which is pretty good, but now that I get it in shot form my red blood cell counts have a hard time staying at 8 to 9 and most recently 7.7. I've had 2 bone marrow biopsy's cause my doctor was nervous but the results came back negative well beyond any concern of cancer. I'm just asking if anyone is being treated for MDS with a different drug. My hematologist says this is the best drug out there for my blood disorder, and even he says most people don't do well on this and he was surprised how well I did when I had it administered through a port. I've had 3 blood transfusions over the last 4 years and at 7.7 my doctor's probably going to want me to have another one.

Jump to this post

My husband was diagnosed 8-2018. He receives weekly N-plate shots and bi-weekly Aranasp injections. He was also diagnosed with ITP at the same time so his platelet count is low. Weekly CBC's. His platelet count is in the 40's..RBC is at 3 HGB's at 9.5 and that is the highest it's been in a year. WBC holding steady in high 5 area..Neutrophils holding their own in mid to high 4's. He has had around 6 blood transfusions in the last year. 3 rounds of Rituxin last year. He was going to start a chemo shot…1 week on and 3 weeks off but his counts dropped suddenly so that is back burnered for a while because before it works it drops your counts. I wish you success in your treatment my friend. Keep the faith. The wife

REPLY

Does anyone have this blood disorder? Vidaza is the only treatment I know of. I take it in shot form because my body has rejected 2 different ports. But when I had my ports my red blood cell count was always around 11.5 and 12 which is pretty good, but now that I get it in shot form my red blood cell counts have a hard time staying at 8 to 9 and most recently 7.7. I've had 2 bone marrow biopsy's cause my doctor was nervous but the results came back negative well beyond any concern of cancer. I'm just asking if anyone is being treated for MDS with a different drug. My hematologist says this is the best drug out there for my blood disorder, and even he says most people don't do well on this and he was surprised how well I did when I had it administered through a port. I've had 3 blood transfusions over the last 4 years and at 7.7 my doctor's probably going to want me to have another one.

REPLY
@jaylevel1

Does anyone have this blood disorder? Vidaza is the only treatment I know of. I take it in shot form because my body has rejected 2 different ports. But when I had my ports my red blood cell count was always around 11.5 and 12 which is pretty good, but now that I get it in shot form my red blood cell counts have a hard time staying at 8 to 9 and most recently 7.7. I've had 2 bone marrow biopsy's cause my doctor was nervous but the results came back negative well beyond any concern of cancer. I'm just asking if anyone is being treated for MDS with a different drug. My hematologist says this is the best drug out there for my blood disorder, and even he says most people don't do well on this and he was surprised how well I did when I had it administered through a port. I've had 3 blood transfusions over the last 4 years and at 7.7 my doctor's probably going to want me to have another one.

Jump to this post

Hello @jaylevel1. You may notice I moved your discussion and combined it with your original discussion titled "Myelodysplastic Syndrome (MDS)," so the members who you discussed with previously would have a chance to see your updated question and post. I'd also like to invite @esperanzam to this discussion as well to share their experiences with MDS and treatments. Here is a list of treatments for MDS, and some differ from the Vidaza you are currently taking, https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/diagnosis-treatment/drc-20366980. @jaylevel1, have any of the above treatments been discussed with your provider?

REPLY

Does anyone here have experience with 5q deletion?

A little background:
My age 77 husband was Dx'd with 5q deletion (a chromosome that's damaged – part of it is missing) one year ago after two bone marrow biopsies and DNA sequencing. His September 2018 biopsy revealed 5q deletion in 67% of nuclei; associated with either de novo or therapy-related MDS or AML (with AML ruled out); myeloblasts under 5%; erythropoiesis megaloblastoid and slightly dysplastic; no myelofibrosis; lymphocytes and plasma cells normal. His bone marrow makes too few red blood cells, they're too large, and they die off too soon; resulting in low hemoglobin counts and excessive fatigue.

Since June 2018 he has had 60 weekly CBC draws, and 60 Procrit injections at 40,000 units. Hemoglobin at Dx in September of 2018 was 8.5 and has risen briefly as high as 10.4; usually hovering in the low 9s. His oncologist normal range is 11.5 to 17.1 and his Mayo hematologist normal range is 13.2 to 16.5. Today he is at 8.1, having fallen from 9.4 in mid-August. His oncologist feels he is nearing the end of ability for Procrit to stimulate red blood cell production. But both the local oncologist and Jax Mayo are unable to predict what "usually" would be the next step, maybe Revlimid.

So… here's what we are interested in:
We see the Vidaza, Procrit, and transfusion discussions. and we're interested in the progression of therapies. We haven't seen posts here discussing Revlimid or Luspatercept. Anyone have experience with Revlimid? We understand that Dr. Rani Komrojki at Tampa's Moffitt has done studies with Luspatercept it's waiting for FDA approvals, and that Luspatercept may be useful for red-cell cancers in addition to the conditions in the studies.

Does anyone have experience with discussions with doctors about Luspatercept possibilities for stimulating red blood cell production or longevity?

Does anyone have a fix on the possible progression from one drug to another as red-cell diseases progress and as therapies fail? Wondering if Vidaza would be the logical next step, or Revlimid, or something else to postpone the need for transfusions.

Reading here, it seems the once per week Procrit injections are a very heavy dose – when some people are able to stay at a decent heme level getting injections every four or five months. We're anticipating a Procrit fail in the next couple months; doctors will of course recommend what to do next, but also wondering how others have dealt with the transition and possibilities for success.

We would never have known the specific Dx had Mayo not done DNA sequencing. We had no idea this should have / could have been done on the first bone marrow aspiration biopsy.

REPLY
Please login or register to post a reply.