Myelodysplasia Support Group
The myelodysplastic syndromes (formerly known as "preleukemia") are a diverse collection of haematological conditions united by ineffective production of blood cells and varying risks of transformation to acute myelogenous leukemia. Anemia requiring chronic blood transfusion is frequently present. Although not a true malignant neoplasm, MDS is nevertheless classified...
Hello, everyone. I just joined your group & read everyone's posts. I was diagnosed April 2008, but know that I had anemia at least during the previous October, because I tried to give blood & was turned down.
I had the bone marrow biopsy & was relieved to know that I'm in an early stage. I see my hematologist/oncologist every 8-10 weeks.
How can I contribute to this discussion?
I had the bone marrow biopsy & was relieved to know that I'm in an early stage. I see my hematologist/oncologist every 8-10 weeks.
How can I contribute to this discussion?
Birdmom, that is great about your bloodcount, must be the weather, that is what mine was last time and I dont go back for 8 weeks.
I didn't mention it before, but I fell Saturday (lost my balance) & not only have a horrible looking purple eye, but now the bruising is spreading below my mouth and partly around the other eye. Eye was closed for 2 days, & now about half open. Did some other damage, but this is the spectacular one. No fractures, & obviously no blood lost--it's in my face!
Funnily enough I used to get a lot more purpura, but it seems to have eased off recently. I wonder whether it is just a phase on the gret progression.......Or reading the papers on bankers and credit crunches, should I have said great depression.
Love Chris.
Well I cannot compete with the mountain boys, but remember I am a few years older than you, and my wife insists that I cannot have a toygirl, or filly. Bit of a spoil sport, don't you think.
But seriously, I would never do anything to hurt her, cos she is by my side all the time, ready to rush me off to hospital with a mouthful of blood, and planning the route to the Bone Marrow Biopsy on Tuesday next. Anyway I love her to bits, and she is 13 years younger than me, so she is my toy girl.
When anyone asks about your face, ask them how many years in the penitentiary your attacker should get; that will get some sympathy.
Chris.
Your wife is a jewel, and so is my husband, who has been right by my side through all this.
Carol, we should get together on our counts. Maybe we're at the same stage. How are you feeling?
She now has a second Dr. working with her, he has helped other patients with MDS and MF. So while we have been waiting on the Revlimid order, and in the hospital at least twice a week for transfusions, he put her on Amicar. Make a note of this one if you haven't heard of it!! This drug helps control bleeds! Finally after so much suffering with horrible long lasting nose bleeds, she has Amicar to prevent bleeding. She can even double her doses if a nose bleed starts up.
My mother's platelet count as of today is 2. Yes...TWO. Her Red blood count/ Hematacrit is 24.9. But she isn't bleeding. Maybe it's divine intervention, but maybe its the medicine. Probably both, right? :) We have hope that the Revlimid will eventually get her counts higher.
I gave her a manicure and pedicure while she was getting her last transfusion. (she can't risk going to get a professional mani/pedi anymore). So we have managed to turn some long hours in the hospital into some quality time.
Birdmom, I am glad you are ok after falling. I know the bruising takes so long to go away! However, it is good to hear that you and Chris are having good lab results lately. :-) Take care everyone.
I can't fathom a platelet count of 2 (mine increased to a whopping 357!).
I have this question that's plaguing me. Any ideas? Since my counts are better now than they were a year ago, does that mean my life span remains at the same original estimate? Didn't think to ask my Dr, probably because I was so surprised.
My face is still multicolored (2 weeks now), & it extends below the jaw line. The hematoma is down to about half the original size, & not as tender. Apparently, this damage appears to be a bit unusual, as every Dr I've seen recently comments on it. Still don't know if MDS is a factor on that score.
Carol, obviously you are still working. I was just about to say I don't know how you do it & thank god I'm retired--when I suddenly remembered that (am I bright or what?) I accepted a job with the Census Bureau. I have a week of training classes late this month, & have committed to 20+ hrs a week. I figured about 2 months' work, but apparently it could stretch to 8 months.
My story (& I'm sticking to it) was "Dinner was late, and the beer was warm." I attended a board meeting this week with over 100 people in attendance (the meeting is videotaped for posterity) & you should have heard the gasps when I got up to do my report from those who hadn't actually seen me. So I had to 'splain myself, using the above story, but beginning with "Some of you know my husband, Humphrey..." You should have heard the giggles.
Chris, I suspect you'll be curious about my husband's name. He is an Aussie because his father emigrated from Cumbria. Fortunately for him, his dad was actually born in Illinois when his own father came over to work the coal mines, so H is an honest-to-god Amurrican.
I think your platelet count of 357 is a good sign that you have many years ahead of you. As you know plates are clotting factors, this high of a number probably means you will not have to deal with loosing blood! Therefore you are not going to become transfusion dependent for a long time..maybe NEVER! :) I would highly suggest Revlimid to anyone down the road of those platelet or hematocrit counts start to decline rapidly. That's one drug that will boost your red count but can cause your platelet count to drop as a side effect. It's mild chemo, taken orally and doesn't have all the typical symptoms of regular chemotherapy. :)
It does not appear that you will be needing that right now but you can always check with your Dr. about it for a future plan.
Take care!
My mothers short hospital stay for transfusions has led to one issue after another. The Ear, Nose and Throat specialist has been called in to pack her nose to keep the bleeding to a minimum--not fun. The Oncologist/Hematologist stopped by this morning to deliver the news that he needs to scan her liver again to define the exact location in order to proceed with radiation. My mother has had a total of 30 buttons of platelets alternating with Amicar I.V.'s every six hours (med that is supposed to stop bleeding).
The nurses and Dr's just say "Her platelet count may as well be zero"-NOT COMFORTING! The onco/hema needs to act fast to reduce the liver size as it is "massive" and still destroying the transfused blood products almost immediately. There is no time to wait for the Revlimid to reverse the transfusion dependency at this point (less transfusions would eventually reduce the size of the liver). My mother keeps adding to her "5 Wishes" living will. She's getting ready for the inevitable. She isn't afraid of death. She knows it's a new beginning. She has never gone to such great lengths to talk with me about her end of life wishes like this before.
I am sorry for posting sad things. But maybe this might help someone decide not to wait on treatment options. My mother was offered Chemotherapy as well as the option of the milder form of chemo in Revlimid over year ago. If she had known that myeloproliferative disorders can turn for the worse in the blink of an eye, then she would have made different decisions.
Dreadful sorry to hear of your Mother's problems. Yes Mds and its friends seem to be very erratic, and unpredictable. I thank God, that I am still OK, but take fully on board that treatment cannot be deferred, and you are making me think. I see the Professor on April 1st, and we are wondering whether we can take a holiday before I start a clinical drogs trial, and I shall now certainly ask whether it is safe to so do, or whether we should scrap the holiday and start immediately.
Thinking of you and your Mother, and I will pray for her.
Good luck
Chris.
I'm so sorry to hear about your Mom, but it seems really so very positive that you are both communicating about her living will, etc. It is so important for you to know what her desires are so that you can be her advocate, and I sense that is very important for you.
So many people just bury their heads in the sand and aren't willing to make preparations for end of life issues, whether they are imminent or off in the future. Soon after I was diagnosed with MDS, I went to an attorney and rewrote my will, living will, put my assets in an estate, found a surrogate for health care decisions, made arrangements for guardians for my child, etc. My family was appalled, didn't want to talk about it, and thought I was planning to die. On the contrary, I was planning to live, but thought I would feel much safer if I had these issues taken care of. They were things that I needed to do whether I was ill or not, and I had just put them off.
I have (had) a musician friend with another type of cancer who remained lucid til near the end, and for him it was clear that the end was soon, so he planned all of the music that he wanted at his "Celebration of Life", who he wanted to be invited, etc. This saved his wife so much additional grief, and helped him to feel that he was leaving her in good hands.
These things are heartbreaking to deal with, but much better than take care of than to ignore.
I admit that I'm curious - what is a "5 wishes" living will?
I wish you and your mom the best, and my thoughts, heart and prayers are with you both.