Daily Strength: Myelodysplasia Support Group
This Web site is a discussion board of information exchange between patients, survivors, and family members. There are posts by doctors, too. Members can find people that share the same challenges, learn what others are doing to cope with these conditions, give support to other members, and share as little personal information as desired.
http://dailystrength.org/c/Myelodysplasia/support-group
I’m newly diagnosed with non-cancerous MDS and haven’t gotten the support and detailed info from my hemotologist and am looking for info about some of my lab work (of which I have a copy). I’ve had 5 iron infusions and 5 aranesp shots and am getting more scoop from the nurses than from my dr. who seems too busy to stay in the room and answer my questions. The nurse said I was A2 (I think) and hat I will probably need more ??. I need to talk to someone who can explain all these papers. I think I’m okay with the CBC’s but the info from the bone marrow test throws me. Help. Also, it’s getting hard to find a vein and they are talking about a port. Do I want one and what are the negatives?
Hello Linda
I also have MDS and have Vidaza 7 days a week with 21 days off. I had a port and am very pleased with it. My port was installed 5 months ago, and so far I can’t tell you of any negatives.
Mdsbeacon.com is a wonderful place for information, and AAMDS.org another.
I hope this helps
Jack
Hi Jack,
My Dad was recently diagnosed with high risk MDS. He is starting Vidaza on Monday at Johns Hopkins. I think he is going to try the injections first and if he gets too much of a reaction he will try IV.
Can I ask why you chose to do IV and not the injections?
Do you have any tips for dealing with side effects or your overall experience with Vidaza?
Thank you so much!
Melissa
Hi Melissa,
You may be interested in this article about managing Vidaza side effects.
We hope your father’s treatments are effective.
My father in law has lived with MDS for many years (8 ??). 2+ yrs ago he was being treated with Revlimid with good results (e.g., needing transfusions only every 6-8 weeks) and feeling pretty well in between. He was taken off the Revlimid almost 2 years ago (allegedly it was not working anymore) and has been receiving blood transfusions almost every week. In the last several months he has really declined; lost excessive weight, lost his appetite, very week and often dizzy. He is not a condidate for any trials that we know of (due to having a pace maker) nor a candiate for a marrow transplant. Any ideas of where I can go for support / ways to address his total lack of energy and loss of appetite? He seems to be slipping away from us . . .
Hi – I have been on Dacogen now for two cycles of 5 days on and 21 days off. I think I have been doing pretty good, except that this month I am exhausted. Not scheduled to have counts done again till July 19th when I start my next round. Does anyone know if exhaustion is a normal effect? I am trying to work 1/2 days on the week of getting infused, and have not been able to make a full day since. Thank you for any comments.
My husband has had neutrophil count of 100 for 8 yrs. Platelets somewhat low. Now RBC’s and Platelets both very low. He has had no treatment altho he goes to a Hematologist every 3 mo.
Hearing all your meds, etc. I’d like to see a lot more action. Anybody recommend a place to go for agressive treatment? – He’s 68, pacemaker, etc. so he’s out for a transplant. Meds helping?? Thanks for any comments.
My 80 year old father has MDS and we are facing some tough times. I’d like to understand more about the progression of the disease and what we can expect as the disease progresses. Currently he is in the hospital fighting C difficile cholitis, a result of the CIPRO he was taking for the ecoli infection he had over the July 4th weekend. I’ve read that infections are common with MDS so I understand that he could relapse, or be afflicted with another infection of some kind, or face issues because of his low platlet count. Prior to his hospitalization he was planning to start Vidazza in an attempt to improve his transfusion dependency. At this point, I’m not sure when or if that is still an option. I’m trying to prepare for either in-home care or an assisted nursing facility at some point in the future. It’s a tough question, but I’d like to know more about the final chapter of those afflicted with MDS.
Hi Susan,
Dr. Erica Warlick from the University of Minnesota said, “Fatigue can be a side effect of either the Dacogen or the MDS itself. I have had a number of patients with fatigue; however, when I’ve attributed it to the Dacogen it is usually after numerous cycles and less likely after 2.
I would be interested to know if there has been a response in the blood counts yet and if so, what counts have improved.
Exhaustion can also be caused by other issues such as infection, hypothyroidism, etc, so it may also make sense to look for those problems as well.”
Hi Patricia,
Dr. Erica Warlick from the University of Minnesota said, “Your question raises a number of questions of my own in order to be able to provide a sufficient answer. Has his diagnosis of MDS been confirmed by bone marrow biopsy? Has he had significant infections with this low neutrophil count? How are his other blood counts, and has he required transfusions? How physically fit is he? You mention a pacemaker, but that in and of itself wouldn’t take him out of the running for a transplant, and more the reason behind the pacemaker that would impact his transplant potential. In order to make a completely informed decision regarding his eligibility for transplantation he really should have a formal consult at a center that does stem cell transplantation. His age of 68 may preclude him from transplant at some centers, but it is not an exclusion factor in and of itself at our institution.”
Hi Linda,
Dr. Mikkael Sekeres from the Cleveland Clinic said, “I’m sorry to hear that your father has had such a difficult course with his MDS.
Some people with MDS live years without any problems whatsoever, while others have frequent bleeding episodes or, like your father, have frequent infections, and can’t seem to go without an infection long enough to start therapy.
Whether or not this is truly the “final chapter” in your father’s life is difficult to say, without knowing his type of MDS, for example, whether he has refractory anemia with or without blasts; refractory cytopenia with multilineage dysplasia, etc. or his International Prognostic Scoring System (IPSS) score – information you can obtain from your father’s doctor.
For those who have MDS and are at the end of their lives, many will require frequent transfusions – blood or platelets weekly, or even many times in a week – and many will have frequent infections, and don’t get better even when treated with antibiotics, as their immune system is profoundly compromised. People who die from complications of MDS usually are not in pain, though, and are eligible for hospice. Check first to see if your particular hospice allows blood or platelet transfusions, and if that’s even something your father wants to continue.”
Do MDS patients see any improvement with alternative therapies that help to boost their immune systems? Are there special diets or other supplements that could be beneficial?
Anonymous,
Dr. Charles Schiffer from the Barbara Ann Karmanos Cancer Institute said, “The answers to all your questions are ‘no.’ There has been no proven means of augmenting the immune system, and it’s possible that some homeopathic meds (since we often aren’t sure what is in them) might have a deleterious interaction with chemotherapy.”
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