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.”
Have any MDS specialists ever considered trying energy medicine as a complimentary therapy? – Addressing the underlying cause of every disease….deeply rooted emotional stressors which are read by the cellular memory and cause the cells to mal-function.
Hi. My 85 year old Dad was diagnosed w/ MDS last May. He is currently on his 2nd round of Vidaza. My question is this: he is diabetic and his blood sugar spikes during treatment. Both his hemotologist and endocrinologist say this is not a side effect of the Vidaza. Has anyone had this experience?
Thank you, this is a very informative site.
My husband has 9 months with Vidaza and he will complete one year with this medication , he still needs blood transfusions after the quimo and Procrit every week. There is another medicine for MDS tha he can try if the actual treatment will no work?
I’ll be 73 in January, 2011, and was diagnosed RAEB-2 in September,2009. Currently RAEB-in-transition (to AML) Been on Vidaza for 7 cycles.
Jan asks about diabetes and Vidaza. I am a diabetic and my BGL goes through the roof during the 7 day injection cycle. Then it calms down to “usual” levels. Never spiked before Vidaza, unless I really pigged out on forbidden foods!
My husband was diagnosed with MDS (bone marrow biopsy + lots of blood tests) and had only two Procrit injections last December and January 2010.
He had a severe reaction and was told he could not have any more Procrit. His hemoglobin levels rose initially (after the Procrit shots), then plunged this spring and summer and then began to rise. He has blood work once a month and his last test showed a hemoglobin of 12.2.
His MDS hematologist/researcher told him that the Dec/Jan. Procrit shots (none since) could have stimulated his bone marrow to make red cells and that it was still working!! I find that impossible to believe. Anyone out there with any experience with this phenomenon?
I was diagnosed with MDS FOUR YEARS AGO with only platelets affected. Now have Refractory Anemia with red cells and platelets affected. I`m on the high side of low with the red cells so that`s good but being 77 yrs. old, is not going to help me.
I stay very tired but at this age don`t plan on taking chemo even though hemotologist has mentioned that I think about it for future.
I think the fight will be worse than the Myelodysplasia taking it`s course.
I`m sure this will not help anyone else but sometimes we just need to express how we feel about it all.
God bless all of you who are in the fight!
Hi Peggy Mills,
I am also age 77 – have had MDS for two years. Vidaza works great – be dead without it. It will turn your stomach into what looks like a very large overripe peach with a lot of purple tones. Side effects are nausa and constipation – take ondansetron to cure the nausa and eat two apples a day for the constipation. My platelets vary from 26,000 after my five days of shots going to 67,000 just before the new shot cycle of six weeks begins again. The Vidaza seeks out fast growning cells, like cancer and platelets and attacts them. All my red and white cells are doing well, BUT THE MAIN THING IS, I NO LONGER HAVE A CLONE ON THE NUMBER EIGHT CHROMAZONE. It is now normal; also, HAVE NO DETECTABLE BLASTs. As I understand it, MDS is a genetic disorder. I function well, but everybodys body is different.
But, hey kid, give it a try. And cheer up!
Merry Christmas,
Baca John
Houston, Texas
I was diagnosed with MDS & Aplastic Anemia almost five years ago and lived with it quite fine [full work days, sports etc] until Nov 2010. It was at his point my doctor dfecided I was the perfect candidate for AGT treatment [a form of chemo that runs for 5 days straight for about 12-15 hours/day]with a 6 month period following to determine if it takes or not.
We are at the three month mark and I am not seeing much change of any sort as a matter of fact I have never felt worse [gums bleed, nose bleeds probalby 75% of the time and I have a run away period that no one can seem to get stopped] and my counts have never been so low [Platelets are 1 and Hemoglobin floats between 89 [on a great day] and 67. I have required several transfusions on both counts since the treatment but never before.
In reviewing everyone’s comments there doesn’t seem to be anyone who has mentioned ATG treatment; is there anyone out there that is familiar with it and can shed some light on it for me?
Please and thank you
Hello,
My mother was diagnosed with MDS in Jan 2010. She’s been taking Dacogen since Jun 2011. Her blood counts improved, but now the counts are declining (platelets 50, red cells 9.5 and neutrophils 400). She’s also feeling very tired after the Dacogen application. I read an article by Dr. Megam Cornelison (MD Anderson) stating that Dacogen dose can be reduced without impacting outcome. I’d like to talk to a doctor about this, as I feel a lower Dacogen dose could mitigate some of the side effects my mom is having. I try to call doctors but they want to see my mom, which is very hard as my mom lives abroad. Is there anyone who could give me some direction?? I’d really appreciate any help!!
Thanks a lot!
Hi Nora. The MDS Beacon covered some of the most exciting results from the American Society of Hematology conference in December 2010.
One of the topics was that Dacogen can be reduced without affecting outcome once the patient’s best response is reached. You can find the related Beacon article here:
http://www.mdsbeacon.com/news/2011/01/03/dacogen-dose-can-be-reduced-in-mds-patients-without-impacting-outcome-once-best-response-is-reached-ash-2010/
Hi Vicki.
You can find information about ATG therapy in these Beacon articles:
http://www.mdsbeacon.com/news/2010/12/10/thymoglobulin-is-a-safe-and-effective-treatment-for-myelodysplastic-syndromes-ash-2010/
http://www.mdsbeacon.com/news/2011/03/01/immunosuppressive-treatment-with-atg-and-cyclosporine-improves-blood-cell-counts-in-mds-patients/
To summarize, ATG therapy is currently approved by the Food and Drug Administration for patients with moderate to severe aplastic anemia. It works by suppressing the patient’s immune system.
ATG has also been found safe and effective for the treatment of MDS patients. Many MDS patients’ blood counts improve when ATG therapy is combined with Cyclosporine treatment.
According to the Aplastic Anemia & MDS International Foundation, it can take over six months before a patient responds to ATG. The response time may be faster when ATG is used with Cyclosporine.
Hi,
My mom was recently diagnosed with MDS and its been a hard time. I was wondering if anyone had advice as to staying strong for her and for myself. We have a great support system but know one has ever experienced this. My mom is currently in a clinical trial at the Cleveland Clinic with Dr. Sekeres. He seems really hopefully but with a upcoming bone marrow transplant and the possiblity of it not working is scary. If it doesnt work she dies. HAs anyone known someone or is one that has had a succesful one? If so do you have any words of advice or anything I can do to stay strong for my family as well as me?
Thanks- Julia
Hi Julia.
You can find all of our articles on bone marrow and stem cell transplantation here:
http://www.mdsbeacon.com/search/stem+cell+transplant
This is a series specifically about what stem cell transplantation as a treatment for MDS is and features the stories of several survivors:
http://www.mdsbeacon.com/tag/resources-on-stem-cell-transplants/
Finally, Sue Stewart at the Blood & Marrow Transplant Information Network works to match stem cell transplant survivors up with patients considering the procedure so that they can talk to somebody who really understands their situation.
We wish your mother the best with her transplant and send our support to you and your family.
i am diganosed with Myelodysplastic syndrome with RARS.I AM INTO SECOND CYCLE OF CHEMOTHERAPY.I AM ON COUMDIN AS I HAVE ST.JUDE VALVE for aortic regurgitation.ANC IS 200.WHEN DO YOU GIVE COLONY STIMULATING FACTORS TO BOOST UP WBC.ANY NEW ARTCLES ABOUT VIDAZA 5 DAYS VERSSUS 7 DAYS
Hi Ranichintam,
Here are two articles from late 2009 that show 7 day dosing of Vidaza is generally more effective than 5 day dosing. I’m not aware of any more recent studies that compare the two dosing schedules.
Five-Day Intravenous Vidaza For MDS Shows Mixed Results Compared To Standard Dosing Regimen, October 2009
Approved Vidaza Dosing Schedule May Be Better And Safer Than Alternatives (ASH 2009), December 2009
Hi Eveyone,
Keep up the fight and do what is right for you.
I`m low risk MDS, AGE 77 but stay very tired. I empathize and sympathize with each one of you.My days are short and my sleep is long but I still do what I love doing….painting, reading , walking etc. Just not as much of it!
Life is to be lived the best way we can. I encourage you to choose to be happy in your plight…no matter what. It`s a choice!
Peggy Mills
Hi, my mum is 75 and has been just been diagnosed with possible MDS she has been treated for her ongoing anemia with EPO and response has been minimal, My mother has AF renal disease and has various health issues, Red blood count now 89 and Renal Dr has increased EPO dose to try and drive the marrow, he said if MDS he would only treat this way as not curable, my questions is I am not sure my mother would tolerate Chemo and I have been reading about the effects of Thalidamide with pts who have MDS, he has not prescribed Bone marrow and no referral to heamatologist, what are your thoughts and what is the life expectancy of MDS and can you diagnose type of MDS without a bone marrow test? And can EPO alone have positive effect on MDS. Thank you lots of questions but hoping someone can shed some light and best treatments to date that may be best for my 75 yr old mother . Thank you
Dear Vanessa,
We are very sorry to hear that your mother may have MDS.
We think it would be useful for your mother to see a hematologist who can order bone marrow testing, which is necessary to properly diagnose MDS.
There are currently three medications approved in the United States for MDS: Revlimid (lenalidomide), Vidaza (azacitidine), and Dacogen (decitabine). Please note that these medications are in different drug categories than standard chemotherapy.
EPO is considered a standard treatment for anemia (low red blood cell count). Transfusions can also be given if EPO is not sufficient.
You may find the following articles that we published on EPO in MDS patients helpful:
http://www.mdsbeacon.com/news/2010/12/16/lower-risk-myelodysplastic-syndromes-patients-responding-to-red-blood-cell-production-stimulators-show-better-disease-outcome-ash-2010/
http://www.mdsbeacon.com/news/2010/09/22/early-treatment-with-red-blood-cell-production-stimulators-may-delay-need-for-red-blood-cell-transfusions/
http://www.mdsbeacon.com/news/2010/02/19/recombinant-erythropoietin-alpha-without-granulyte-colony-stimulating-factor-produces-longer-survival-in-myelodysplastic-syndromes-patients/
The life expectancy for MDS depends on the severity of the disease. It can range from a few months in severe cases to years in milder cases. Please also see our article on MDS prognosis:
http://www.mdsbeacon.com/resources/2009/05/01/prognosis/
All the best to your mother, and please keep us updated on how she is doing.
Hi Everyone
In March 2010 I was diagnoised with MDS. Totally ignorant to this ‘condition’ I relied heavily on my doctor (considered the best in this area). I did the standard round of tests, CBC’s, bone marrow evals, etc. It was determined that the best course of action was to start chemo treatments (vidaza). After five, week long sessions, my condition improved, but the progression baffled the doctor. I went to the MDS research center at the U of Chicago and had all test performed again. Yep, I NEVER HAD MDS. My anemia was caused by a total depletion of B-12. My system does not have the intrinsic factor, and I was unable to absorp B-12 normally. I’ve been getting monthly shots and CBC’s since Aug 2010, and have been diagnosed “nornal”.
It is very important that you get as much information you can about your specific condition. Do not believe everything on the Internet, but use it to ask questions. Most of all — get a second opinion!! I would highly recommend the University of Chicago. Good luck ya’ll.
Happy May Day everyone. B-12 shots monthly along with EPO’s have kept me going quite well. Have had low-risk MDS for over four years now. Being 85, no transplant for me. My husband passed away with MDS a little over 10 years ago. His was high-risk, naturally, and was treated for three years, but only with transfusions and Procrit. Different Doctors are really different when it comes to treatment. One Oncologist I had, said it is not unusual for a spouse to have it also. Another says, impossible. So who knows. Guess like lightning striking twice in the same spot. Good Luck to all.
To Rick Dee:
Your post gave me such hope! My 66 yr old sister was just diagnosed with MDS, but her hematologist and oncologist are not steadfast in the diagnosis. She truly fits NONE of the risk categories, but has had CBC and bone marrow testing, indicating otherwise. She does not exhibit any physical symptoms (which I know does not mean much), but she, as a child had b12 deficiencies. My gut feeling, after reading your post, is to have additional testing before scheduled treatment begins. She did have the presences of blasts in her cells. Did you have a percentage of blasts? If so, would you mind sharing your numbers? Thank you so very much for any help/advice you can impart. I hope you are continuing to do well and am glad things turned out so well for you!!
Hello everybody,
I was recently diagnosed with low risk MDS (4 month).Current recommendation is just follow up (every 6-8 weeks).
I have started to take a bunch of supplements (green tea ECGC extract, curcumin,broccoli sprouts, vitamin D ,vitamin A, CoQ10, lipoic acid and L carnitine). This is based on some biological published observations and logics. I am a bioscientist experienced in drug development.
I am trying to inhibit DNA methylation (similar to Vizada)and stimulate differentiation and also increase energy (ATP) production.
I like to suggest an experiment for early diagnosed patients: 50-100 patients that will take supplements and report follow up hematology blood counts and energy (fatigue).
In this way we may gather valuable info .
My 88 year old mother was just diagnosed last month with MDS – WHO classification “refractory cytopenia” and IPSS classification “intermediate 1.” She still feels fairly good, so they are not doing any treatment on her until she needs it. Her last labs in May were: wbc 3.41; rbc 3.22; Hg 10.4; Hct 31.4; platelets 45 and absolute netrophils 1.61. My questions are:
a) how long will she be able to sustain her current active lifestyle? She tells me she isn’t even more tired than normal. Is there a point where she will just start feeling bad and that will be the end of her normal life, or could she go on for years in her current state, even at her age?
b) all of her labs (wbc, rbc, plates, Hg, Hct, and neutrophils are below normal. Why would they not do any treatment at all? We don’t even go back to see the doctor for 2 months for more labs. I have a sister who thinks that they have “written her off” because of her age and that is why they are not doing any treatment. Not sure I think the same thing, but I’d like another opinion. Thanks.
To Jill,
I am not a physician. I am a patient and scientist that did quite a bit of home work (read many papers and talked to a number of physicians).
The recommendation your mother got seems to me reasonable.
In my previous comment I sugested a cocktail of supplements.Although not proven, but logical. It also is not cheep.
In fact I suggested an experiment that may produce valuable information.
I think that a more active Facebook forum would be also usefull in order to share our experiences.The MDS Beacon seems a good forum.
Wishing a long joyful life to your mother and to all MDS patients.
Hi Jill,
Dr. Emmanuel Besa from Thomas Jefferson University and Medical College in Philadelphia said:
My 88 year old mother was just diagnosed last month with MDS – WHO classification “refractory cytopenia” and IPSS classification “intermediate 1.” She still feels fairly good, so they are not doing any treatment on her until she needs it. Her last labs in May were: wbc 3.41; rbc 3.22; Hg 10.4; Hct 31.4; platelets 45 and absolute netrophils 1.61.
Comment: The standard therapy for asymptomatic MDS not requiring blood transfusions is to wait and see how soon the disease progresses. One of my research interests has been to see if we can prevent this from getting worse, and we have early data which took 16 years since we were not sure how soon progression occurs in early stage MDS.
My questions are:
a) how long will she be able to sustain her current active lifestyle? She tells me she isn’t even more tired than normal. Is there a point where she will just start feeling bad and that will be the end of her normal life, or could she go on for years in her current state, even at her age?
Comment: One important information that is missing is her chromosome study of her bone marrow. This could help approximate the duration and progression of MDS. INT-1 patients may take a few years, but again without information it will be difficult to predict.
b) all of her labs (wbc, rbc, plates, Hg, Hct, and neutrophils are below normal. Why would they not do any treatment at all?
Comment: The reason is no one knows what treatment to give that will not harm the patient for mild lowering of blood counts since most approved medications for MDS can make these counts worse. That is why more research should be done on prevention in addition to treatment of the disease when the risks are higher such as when they start to require blood transfusions.
We don’t even go back to see the doctor for 2 months for more labs. I have a sister who thinks that they have “written her off” because of her age and that is why they are not doing any treatment. Not sure I think the same thing, but I’d like another opinion.
Comment: That is why we recommend getting second opinions. Her doctor is just following standard recommendations according to available information.
My sister’s doctor said the cause of my sister’s mds was chromosomal, after saying he was not really sure what caused it. He was not specific as to what chromosome(s) had the abnormality. Is it possible to determine exactly which chromosome is causing the mds? Is it unreasonable to want to know this information, especially when she falls under no other known risk categories? She has started her treatment, but many of us family members are frightened this is not the correct course of action without being 100 percent sure this is what she has.
Hi Regina,
It is definitely possible to test for certain chromosomal abnormalities associated with MDS, and this is typically done at diagnosis. Chromosomal abnormalities can be detected by cytogenetics or Fluorescent In-Situ Hybridization (FISH).
You should definitely ask for a copy of your sister’s chromosomal analysis. As Dr. Besa said in his reply above to Jill, this is important to determine your sister’s prognosis and to develop a treatment plan.
All the best to you and your sister. Please keep us updated as things progress.
Thank you for the information. I will keep you updated.
To Regina:
Sorry so late, been out of town (no internet). Let me give you an overview of how my “numbers” led to a MDS diagnosis. Flow cytometry study of my bone marrow showed “mild increased myeloblasts (03%).” I learned later that 3% is normal. One area of their concern was a translocation between chromosomes 12 and 18. Again I learned that 1 out 8 “normal” people have translocated chromosomes. After the U of Chicago redid these tests, blasts were 03%; chromosomes were ALL NORMAL. I did have five cycles of chemo, and the U of C said that may have corrected the translocation. However, I can’t find any medical referance that recommends chemo as a treatment.
As a survivor of Medical Malpractice I strongly recommend you get a second opinion ASAP.
A big HAPPY FATHERS DAY to all the Dad’s out there.
hi my name richard i live in florida citrus counity i have m.d.s for 3 years all i do is sit home day afther day i cant work some days i am so week and tired i dont talk about to annyone about it i dont see the point you just wait and see what happens right. well thanks for listin by richard mckinstry
Thanks for the info, Rick. Sister has “too many blasts” (20%) to be attributed to vitamin b12 deficiency, says the doctor in response to our list of risks/symptoms she has which point in that direction. Also says alcohol intake could cause bone marrow damage, but not the amount she drinks. I suspect this may be the source of the problem, perhaps triggering a pre-existing b12 deficient. If patient history is not accurate, in my opinion, either will be diagnosis.
richard
I know what your going through. When my “problem” started, I would walk up 11 steps and have to lay down and rest for 10 min. My head would spin and I felt weak all over. I told no one of my condition (typical male ego). It all hit the fan when I ‘fell asleep at the wheel’ going 65 mph on the Interstate. Wife’s scream and new tires on the SUV saved us. You don’t mention your treatments, but you need to research your condition. Energy boosters, diet change, maybe a change in treatment — but please, talk to your doctor or his staff.
Hi My Name is Stacey and I am 47 yr old woman with high risk MDS.
First diagnosis was September 2009>did Vidaza (recommend never doing the “shots” vs IV – Killer Bee program is my nickname for it) until Dec. 2009 then January 2010 went to Moffitt Cancer Center in Tampa, Fl had bone marrow transplant on January 19, 2010. Was told I was “cured” March 3, 2010. August 2010 bone marrow biospsy results has MDS back. Did chemotherapy in the fall. Had pnemonia in January and then again in May 2011. Chemo treatments in between pnemonias. It’s been a rough year. Blast count has now moved up to 18% and doctors are looking at the chemo drug called Clofarabine. Sure good use a story of hope out there that one can survive this. Thanks Stacey
Stacey, did you have your B12 level tested? Not merely as part of your blood work, but through a methylmalonic acid test (mma) and/or homocysteine test? These tests are NOT automatically performed as part of one’s blood work. They must be specifically ordered by your doctor. They will detect whether or not you have a true b12 deficiency, which can be misdiagnosed as mds. Also, sensitive issue for many, but watch your alcohol intake. Excessive alcohol use (more than one drink–5oz wine or 12 oz beer or 2 oz hard liquour) can affect bone marrow–even blast count and dna activity, and can also mistakenly point to mds. Alcohol in one’s system 1-2 days before blood work or bone marrow biopsy will also taint results. Good luck!!
Hi everyone, my name is Lorna, I have just turned 47 and was diagnosed low risk MDS in January 2011. I had never heard of the disease and then i read up on it on the website and now am reading all the peoples comments on the MDS Support Group Site. I thought i was alone till i read all the rest of these stories. I currently receive blood transfusions every two to three weeks, consultants are baffled as to why i acquired this disease at my age. I am getting a bone marrow assessment at the Beatson Hospital on 1st September 2011, the specialists at the Beatson will explain to me wot further treatments could become available to me in the future. I am currently very well healthwise apart from being breathless slightly now and again. At first my doctor said i had pernicious anaemia where vitamin b12 is very low, but after 13 vitamin b12 injections my RBCells never rose. Good luck to everyone goint through treatment for this illness and hope you all keep well and get better soon. X
)) X
I have a question for anyone who may know about the fatigue that we battle with MDS. Some days I can hardly keep going and other days are better. I walk, exercise, decorate for others and am an artist as well.
A real struggle sometimes….and then I realize I`m 77 and maybe that`s the reason so fatigued.
My body is not keeping up with my joy!
Is there anyone out there who is fatigued with 11 red cell ct and platlet ct. from 79,000-117,000?
Perplexed becauise hemotologist says if red cell ct. no lower than shouldn`t feel this way.
I don`t think enough is known about RA with platelets bouncing up and down. I know this must be the problem.
Anyone out there in this place or knows more than I do?. Please let me know.Troubled by this with no answers.
Peggy: If you aren’t taking B-12′s – get on them. A once a month shot helps. Without a doubt, they will test
you for a B-12 deficiency – and tell you that you are fine. You need the shot – not the pills which are not a help. A hemo of 11 if pretty good for low-risk, if it stays that. Accept your fatigue – it is part of your illness tho some aren’t bothered with it, other are. The days you can do any thing – get physical and enjoy it, days you can’t – paint or read – tomorrow may be a better day. Just pray it stays low risk!
Vernette Godfrey
My FIL was diagnosed with low risk MDS in June 2011(8% blasts).
He is 67 yrs old and has been on oral Dacogen and Cyclosporin since June 2011.
His Haemoglobin was 7.0 when the treatment started. It is now at 5.0.
He had a Vit B-12 deficiency last year. B-12 injections raised his haemoglobin to 8.0 last year. He never had a B-12 level test this year. Am worried he’s being misdiagonosed.
Reading your comment – Are B-12 injections to be taken regularly if you have ever been diagonosed with pernicious anaemia?
Doctors in my FIL’s country never prescribed regular B-12 injections. He did just 5 injections in June last year.
Vernette Godfrey,
Thank you so much for your input! It really helps to hear from others!
Linda from MDS Beacon got in touch with me and sent an article
explaining that the red cell count doesn`t have to be low to have
fatigue.
My fatigue is much worse in last few weeks and was great of Linda to
get info to me so fast.Thank you Linda at MDS Beacon!!!
I get a lot done from 8-1
or 2 o clock and then I shut down.Will talk to my doc about the B12
shots! Thank you so much!
I do enjoy my Art so much and I do all my own work plus yoga and
walking….oh and teaching a few young working woman in Bible Study
one evening a week. Think because of the fatigue will have to give
that up……and it`s okay.
Learning to lean into whatever is
happening.I think most of us on this journey do better when we know
what`s happening.Don`t you?
Take care Linda and thanks again!
Anyone out there with MDS have trouble flying?
Last two flights I was deadly ill for hours.Vomiting, almost passing
out. Med didn`t help the sickness…..was taken off plane..and WAS BEING TAKEN TO HOSPITOL….AND WOULDN
Hello to Vernette,
Enjoyed meeting you at the LA. Conference in May. Thank you for your story.
I’m wondering if any one knows if Vidaza for Low Risk MDS is as sucessful as it appears to be for higher risk MDS? There is some info for q-5 which seems to be in the 30% range of MDS. A friend of mine has had a longer survival, at this point, ten years. Now they started her on Vidaza since Revlimid did not work.
Is demethylation as effective in q-5 or in this case chromosome 20(del q 11.2, q 13.1) as it is in higher risk MDS? Her chromsome I.D. seems to in 3-5% range of occurrence.
Thanks for any info.
Myrna
My mother, 70, has been diagnosed this last month with RCMD at intermediate 1 stage. She had stage II breast cancer over 15 years ago – post chemoradiation and 5 years of treatment with tamoxifen. She has had two opinions – one physician suggested Revlimid. She began taking the medication and experienced side effects such as itchiness and general discomfort. Seeking advice from another physician, it was suggested that she stop taking Revlimid and that no further course of action be taken until such time as needed. I’m curious to know if there is any advice out there, from another surgeon, as to the following question: Is it necessarily advised that some treatment is better than none at all?
Hi Jill and Peggy,
My mother (who will be 76 on Sept. 9th) has had MDS for 5-6 years. We live 5 minutes away and are very close.
She has never been treated with medication, her blood counts have remained steady. Although when she gets ill they tend to go down a bit. Some times they actually improve quite a bit. But in general she has not progressed during this time. Her greatest issue is a total lack of immunity and needing to make sure to go to the Dr. the very first day she is starting to feel ill. To prevent a rapid progression from a minor illness to a major one. She has been given injections of Nupigen when ill to boost her immunity, during the last year, which has made all the difference!
I know it seems that you want her to do something to treat it but for some things often not treating them and watching for change is the best answer. that has been the case for her. but I understand it is not always easy no matter what is done or not done. It is concerning for the patient and the family. She has blood tests every other week, occasionally weekly or even monthly depending on the numbers.
It is a frightening thing for all but it is also a stressful illness. My mother has always been a very energetic person. She usually walks 1-2 miles a day and even works still but she needs to take breaks! Although we would both she rather not do. Her stress level affects her energy tremendously as does whether or not she is recovering from an illness. But in general she tires much more easily than she used to and smaller things cause stress than in the past. She may tend to be more stressed by MDS than other patients due to both of her parents dying from cancer unrelated forms) and her sister dying from Leukemia in 1994. Which was also unrelated to MDS.
She is an very early riser (5 ish) but has pretty much had it by 5 or 6 and goes to bed often by 7 although many nights she is up until 8:30 or even occasionally 10.
She has an exceptional team of Drs. (oncologist, pulmonologist, hematologist, etc.). I recently went with her to see her oncologist who said there is no reason that she can not live to be into her 90′s with proper monitoring and rapid treatment of illnesses.
Charlotte,
Thank you for all the info.
Helps to talk with those who have stories of their fight and live life the very best they can.
I think I have understanding of MDS and fatigue is overwhelming sometimes and then I think, do I really?? Like today.
Full sat. but had to go to bed and rest yesterday aft.
Full morning but now after 2 and I`m totally wasted from the fatigue.
Think I have this MDS all figured out but know today that I don`t understand it at all.
Hemotologist told me to come back in a year….that I too, am progressing but so slowly I will most likely die of a stroke before this.
My geratric doc insists on taking blood every three months and is keeping up with all the changes. Hard to understand but ofcouese if I have questions to come back and see hemotologist. The changes are taking place and I`m settling into just doing what I can do. Afternoons and evening are
times of rest. I have no choice. Some days I can do more but there are not many.
I`m learning to just lean into what my body allows me to do. I don`t get on anyone else schedule and that takes the stress out.
Venting but it helps…………
Thanks to anyone listening………….
I have CMML which is clasified with MDS. Does anyone have CMML on this site. Thanks….. Sharon
to Peggy Mills .
1.Your blood counts defenitly should be folowed every other month at least.Seeing a hematologist once a year is not good clinical practice ,in my opinion.
2. For your fatigue, try CoQ10 at reletively high dose >500mg(?).
CoQ10 is a supplement, not an approved drug.
There is a clinical trial published a few years ago By Galili and Raza, showing positive effects on some MDS patients , improving blood counts.
CoQ10 is known to boost energy in general.
I am taking a product with improved bioavailability (marketed in Israel) plus other supplements, and feel pretty good so far.
Granted I have low risk MDS ,Refractive anemia Excess blasts. Worth trying.
Feel free contacting me directly avivgreen@gmail.com
Aviv,
Thanks for your input. I felt also that waiting a year to see Hemotologist wasn`t good. Since I have told her I don`t want chemo, felt I was dismissed. I didn`t question at the time, felt a bit numb but my gereratric doc will let her know if blood tests reveal somthing she needs to know. Maybe thats what she was thinking plus my progression is slow.
Waiting and not knowing how you will fell today is a bit hard to live with but I feel I`m one of the lucky ones and thank God everyday.
I will give your suggestion a try!
Thank you so much!
Hi,
My dad (78) was diagnosed with MDS in Aug 2011 ( RAEB-1). He has had 3 rounds of Vidaza, a 2nd diagnosis said Vidaza takes 5-6 months to work. All his blood counts are very low, he seems to need blood transfusions weekly now and is very weak just a week after his last transfusion. He used to be stronger after transfusions but is now very week, he gets winded easy. What is life for an MDS patients like like? Is this the norm? His blood counts are so low that his doctor doesn’t want to give him more Vidaza yet.
Thanks!
Hello Annette.
You can find an overview of the signs and symptoms of MDS here:
http://www.mdsbeacon.com/resources/2009/05/01/signs-symptoms/
We also feature real life patient profiles, so you can compare your dad’s experience with our interviewees’ to get a sense of “the norm” with MDS. All of the patient profiles can be found here:
http://www.mdsbeacon.com/tag/patient-interview/
Finally, you and your dad may find the following article written by Dr. David Steensma on fatigue in MDS patients helpful:
http://www.mdsbeacon.com/news/2011/07/05/are-you-tired-a-frank-discussion-about-fatigue-in-patients-with-myelodysplastic-syndromes/
Please let us know if you need anymore information. Best wishes for a healthy 2012 to you and your dad.
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