New MDS patient
May 17, 2019 at 5:57 pm #46763
Hello message board readers. I am seeking to hear especially from MDS people who have chosen no aggressive treatment. After 17 1/2 years of taking oral chemo for too many platelets (essential thrombocytosis), my marrow has begun to fail the last 8 months, and now I have MDS– skidding platelets (107,000 instead of 750,000); low red count, all different sizes; low hemoglobin (8.1-6.6) and blasts at 13%. My WBC count is 10, which is triple what it used to make. Last marrow biopsy showed a deletion of the long arm of #7, plus abnormal #11 and #21. Because taking oral chemo (hydroxy urea) for 17+ years led me to failed marrow, I do not plan to fight the MDS with any type of chemo treatment or transplant, only get transfusions. I’ve had 3 so far, with the middle one in March not giving any kind of ‘boost’ to my numbers. At times the anemia is debilitating, and I’ve lost 21 lbs. I am 66, a widow, and feel I’m choosing Heaven instead of trying to live longer by not taking any drugs or fighting the MDS. Are there people out there who’ve also chosen not to fight the disease? What has it been like for you? THANK YOU!!May 18, 2019 at 6:52 am #46764
Misty, hopefully you have a good support system to respect and help you through your journey and you sound like you know the course you want to take going forward. If you have access to a palliative care service they can be of great benefit helping you navigate life forward and dealing with the physical as well as emotional hurdles to come. As long as you are at peace with your decisions my hope for you is to enjoy everyday you have as really that’s all any of us has , today only. I for one have a similar plan as yours when my treatment ceases to prove effective any longer and am at peace with that. Wishing you all the best.May 18, 2019 at 3:35 pm #46765
Kathy, Thank you for your peaceful reply (I teared up) =- and the suggestion to check with palliative care sooner rather than later. There is a wonderful hospice site just 9 miles from my home, and I’d planned to wait for the angels to pick me up there. 🙂 Read your profile and messages; really admire what you’ve done to deal with the disease. I know I could not do what you’ve already done. So you’re a nurse! Good for you. I’m discouraged because my male hematologist for the 17+ years with Ess. Thrombo would tell me NOTHING other than that “all was good” by staying on the hydroxy urea. After he ordered a BMB but gave me no info, other than my marrow was developing scar tissue, I dropped him and picked a female hematologist that a friend w/cancer at church really likes. But it’s been 9 mo. and we have not been on the same page. I would show her charts and graphs I’d made to prove that my marrow was acting really wacky over past previous months, and she’d dismiss it, mostly saying my 2 strokes last summer were the cause of the bad blood numbers. I don’t feel she’s taking any time to really look at my MDS symptoms. (sniff) TY again for writing.May 19, 2019 at 7:39 am #46766
I would urge you to find a physician who you like and will work with you. There’s enough uncertainty in dealing with this disease without wondering if your doc is on the same page as you. Ask the oncology nurses where you are followed and see who they like. I always ask the question, “If I was your mom/sister who would you recommend I see?” I tapped into palliative care service right after my diagnosis last year as I knew I would be dealing with a chronic disease the rest of my life and made sure I had a doc who I could really work with and who would listen to me and what I wanted the course to look like. She’s an expert but we bounce choices off each other and truly work as a team.July 2, 2019 at 5:56 pm #46965
I have had an MDS diagnosis since 2015. So far I have had multiple blood transfusions as well as about 10 months of Vidaza. The Vidaza did slow down the MDS but eventually it sapped my strength and they took me off of it. Currently I am on Decedron to help keep my energy up but that is a a short term solution.
General feeling is that within a few months I will need to go to skilled nursing/hospice but for now, I am pushing forward, planning vacations and just had a big 75th birthday party. I am very satisfied with the care and 5he plans so enjoying each day becomes my focus.July 3, 2019 at 4:51 pm #46985
Hello John. 71st for me next Tuesday (9th) hope I can make it 75 like you and hopefully beyond. I, like you am trying to continue to do the things I enjoy, taking the boat out for a fish, taking grand children to basketball and football training, picking them up from school etc.
PeterJuly 3, 2019 at 8:52 pm #46987
Just had my 82nd birthday. Was diagnosed with High Risk MDS two years ago June. Was told I “had two years” I am still here. I get weekly Procrit injections. The Cancer Clinic says they can do no more. Last blood draw was RBC 3.13 Hgb 8.6 WBC 30.0 LYM 12.6 Have had two BMW. I also have severe COPD. I still enjoy every day. I have no fear about leaving for my heavenly home. In God’s time.July 3, 2019 at 9:08 pm #46988
Cheers Nancee, Love your attitude/outlook, I hope I can gain the strength that you have to push on.
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