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I am 63 and have been dealing with this disease for 4 yrs. Been transfusion dependent 2 years and have now transitioned to AML. Am now at a point where I know I’ll not win this battle and am going on hospice going forward. No treatments have worked and gotten to the point where blood products are now just a bandaid fix. Am peaceful with my decision and have love and support around me. Peaceful journey to you all
Diagnosed 3/18 with MDS 5q del and tried Revlimid for 1 year without results, 6months azacitidine without change. Quit and went on supportive care (blood every 2-3 weeks) October 2019 with good quality of life. Forward to May 2020 and due to blast count rising suspecting progression to AML confirmed via biopsy February 2021 (still having good quality besides a bit more fatigue). Decided to give it one more go with decitibine/venetoclax for a month but alas, didn’t change anything and I spent 3 miserable weeks from chemo. Was given 6 months last May, am back to supportive care. No hospitalization, and DNI/DNR (which I have been since day 1) and gonna enjoy every extra day I can with my family, grandkids, friends until I hit the finish line. Affairs in order and wishes accepted and respected by all. I feel so peaceful. Wishing the best to all on their own journey.
This disease can throw all sorts of curveballs at ya. No two people follow the same course. As my disease has progressed (given 6months 7 months ago), am still living each and every day to the fullest depending on how I feel. Every few weeks when I’m close to needing blood I go and get checked and get tanked up. The fatigue comes with the lower hgb and I’ve just learned to listen to my body and kick back when need be. Some things I can’t do anymore due to fatigue or because my plts are now in mid 20’s (no contact spots for me)I’m just thankful for all the times I did enjoy doing those things. As I’m just coasting at this time, whenever I fret about something, my doc reassures me and says, just continue to live your life as you’ve been doing. I’ve chosen a path of “just being” and so far working out ok. Knowing the shoe will drop one of these days but at least I’ve had time to prepare. Peace and best of luck to all dealing with this disease.
MDS is blood cancer. You should discuss with your physician getting the vaccine
I am 62yo diagnosed in 2018 with del 5q and took Revlimid for a year with dose adjustments made due to changes in labs but never received any benefits from taking it. Bone marrow biopsies done periodically showed disease progression and was switched to Vidaza which also had zero effects after 6 months. A biopsy and being treated at a Center of Excellence is the best way to navigate this disease. I have been off all treatment for 15 months due to any viable options (clinical trial or transplant neither of which I want due to poor odds and extended time in hospital) so have had good quality just being transfusion dependent treating symptoms of fatigue every few weeks. Some have stabilization with treatments but disease progression is almost inevitable unfortunately. A biopsy is your best bet to see where things are.
My take so far is the wheatgrass has some benefits. In the last 6 months getting 2 units of blood every 2-3 weeks my ferritin level has held at 1600 so I’m gonna keep taking it. Also has immune benefits. If it’s keeping my iron level from going up I’m in! Have been doing since August 1st
I am 62 yrs young and also transfusion dependent after failing treatments opting for supportive care only since last September. Quality of life has been good and go every 2-3 weeks for 2 units of blood when hgb gets into low 7’s and I feel it. One thing to discuss with your physican is treating the symptoms your mom has with transfusions but also considering that older people can get fluid overload which can stress the heart if too much blood or given too fast. Palliative care services are a great option and have helped me over the past 3 yrs with coping. Was given a prognosis of 6 months about 6 months ago and still enjoying everyday I feel good. Have all my end of life details in order and taking it one day at a time.
It’s so difficult to predict how this disease goes as it affects everyone so differently. Hopefully your daughter is being followed at a Center of Excellence by a physician knowledgeable in this disease who is also able to take into account her other health issues to enable her to live her best quality life.
I have been using powdered wheatgrass since early August after seeing this post and since I had to quit Rx chelation due to low platelets in May. My ferritin was in the 1600 range in May and had it rechecked after taking wheatgrass for a month (had also had 3 months of transfusions every 2-3 weeks). My level was still around 1600 so I was pleased. Will get rechecked beginning of December (am still getting regular transfusions) and report back. If levels holding or less would say it definitely has benefits.
Mary, I would be happy to speak with you anytime as a fellow patient.
If interested email me
firstname.lastname@example.org and I’ll give you my phone #
I get this frequently when my hgb gets low and is a sign from my body I’m reaching a point of needing blood. After living with this for a few years, my body has adapted to being low and gets more pronounced when my hgb gets in the low 7’s. The “whooshing” sound used to drive me crazy and was a constant reminder to me that I had this nasty disease but now is most pronounced at the end of the day when I’m fatigued.
Difficult to answer as each of us will be different. I was given my 6 month notice in May as no further treatment options but clinical trial or transplant neither of which I’m interested in. Am guessing as counts tank bleeding a good possibility, breathing will worsen with dropping hgb As a widow, have my best friend on board to be with me along with support of hospice staff so my family can be supportive as best able. All involved already know my wishes on this which gives me peace not fear. Currently enjoying every day I can being kept going with every 3 week transfusions. When these get to interfere with my quality of life will enlist hospice to keep me comfortable as per my wishes. I’ve got all my affairs in order and my time so far since quitting treatments last September have been good. Lots of wonderful angels in my life to make my transition as smooth as possible. Love my life but also accept it will end at sometime from something. I try not to get too stressed over that which I cannot control.
I go in and get labs done when I don’t feel good (of course I now know when my hgb low) and get blood mostly every 2-3 weeks. Went 18 months hoping for results from treatments which was stressful for me. Don’t do that anymore and just try to live. I’ve had the luxury of time to prepare for the inevitable and feels just right for me
Transplant Living Center | Mount Sinai – New York
For your friend in NY
Mark, try this as a resource for some help if you consider transplant
Every disease particulars are different but I can give you figures I was told by my physician whom I like and respect. I have advancing MDS heading to AML and have not responded to either treatment tried. My only choices at this point is transplant or clinical trial neither of which I have chosen to do. Statistics in my case are 50% success of transplant and 30% chance of relapse. That being said, success does not take into account any fallout from transplant side effects ie GVHD, any organ damage. It’s not like getting an oil change! I personally know someone who had a transplant at age 26 and was considered a success but lived 6 hrs on oxygen as GVHD took out his lungs and ended up with a double lung transplant now 4 yrs out and quality of life at age 35 still not great. I have been off all treatments since last September – no wish for a transplant or clinical trial and have to say, despite advancing disease my quality of life has been pretty darn good. It’s a personal choice for everyone but make sure to get good information and understanding of everything said before making a decision. Get another opinion if need be.