Newly diagnosed

[Frances Kinder]

Hi
I was newly diagnosed with MDS. I am 58 years old and female. I am very scared, my dad had CLL and my grandfather had MDS which turned to AML. I am waiting for an appointment with the tertiary care center. I don’t have the cytogenetics though. I am a RN. I want to cure this condition. I am scared of a bone marrow transplant. Any thoughts?

[Anonymous]

Hi Frances, Sherry Pratt Pratt9075@aol.com responded to your post above:
Francis Kinder, do not be afraid of a stem cell transplant. I had one in Jan and I am in remission from MDS now. It is just a season you go through to be cured. Find a GREAT CRNTER OF EXCELLENCE WITH A GREAT TRACK RECORD and go there. Pratt9075@aol.com

[Raphel Hargett]

hi i was recently diagnosed with MDS my IPSS score is 1.5 or intermediate risk i am in a clinical trial with an experimental drug called ASTX727 i am on my second cycle i have not found a lot of info on this treatment i was told in the beginning that i would go through 6-8 months of treatment every 28 days with 5 days of treatment then i would receive a stem cell transplant i have lots of questions but not a lot of answers it has all been very overwhelming fortunately my counts have come up but i worry how long it wit stay that way and how long the treatment will work there is so much to worry about they have told me that i dont need a transplant right now it’s just that i worry about the future i guess

[mdsfound]

Hi Raphel, Welcome to our Message Board. More info on the ASTX727 trial can be found on these two links: https://clinicaltrials.gov/ct2/show/NCT02103478?term=ASTX727&rank=1 and here https://www.mds-foundation.org/wp-content/uploads/2014/11/ASTX727-01_MDS_FastFacts-v3.pdf. I hope this helps.

[Donna]

Hi……I have been recently diagnosed with MDS through blood work only. Does that seem possible? I was told that the bone marrow biopsy would be booked and I would start chemo soon. I had the biopsy yesterday and will know the results in about a week. My blood work was improved yesterday….WBC and platelets were both higher, still below normal but better than previous test. In the genetic testing, I have mutations of ASXL1 and SRSF2 genes. Could that be how my doctor came up with the MDS diagnosis before the biopsy? I had WBC of 1.6 and platelets of 89 the end of March; yesterday WBC was 2.4 and platelets are 94. Is it possible that I don’t have MDS or do the gene mutations seal this diagnosis before I get bone marrow biopsy results? Thank you in advance for any feedback. I am a 72 year old female in good health otherwise. I am at a very respectable hospital and this is my second opinion.

[walker4773]

Hi Frances, I was in your shoes about 2 yrs ago when the diagnosis came from left field – very few medical problems, checkups every few years, etc. but in good health for a 65 yr old. I was not very athletic but played in sports and kept my weight down. Anyway, after going thru 6 mos of chemo (Vidaza) and numerous bone marrow biopsies, Mayo clinic found a BTM donor and I went thru a bone marrow transplant. Stayed at Mayo hospital for 24 days (great facility, great staff) and was released with 1 year of follow-up checks (daily, then weekly, then bi-weekly, then monthly). This Jan. (1 yr. post transplant) I was released by my Mayo doctor and transferred to a local oncologist. I fell myself as very fortunate with the help of knowledgeable doctors, nurses, oncologists and a very supportive wife and family. This is written to tell you that there are success stories and it is not all negative. I’m pretty much back to my normal life with some minor changes but grateful to be here.
Jim P

[Brake Bethany]

I agree, their is nothing to be feared of in transplant. My mother had went through her transplant last week and she was absolutely fine..

[Marianne Sarkin]

Hi Frances!
I just found this message board. Newly diagnosed with MDS a month ago after a routine check. I am also 58 and feeling a bit “gobsmacked”. Waiting for a referral to Strong Memorial in Rochesteer, NY. My doc is great, but lacking in the most up to date info. Not sure how to correspond here. My email is 84closeby92@gmail.com if you would like to connect.
Love&Peace,
Marianne

[Roxana Dell’Osso]

Hi,
I was diagnosed with MDS 10 years ago, I was considered low risk and no treatment necessary “watch and wait”, but it seems that old good things come to an end. In the past 2 months I have moved to be Intermediate Risk, and I was talked about a drug trial ASTX727. I did a search and there is a person in this forum that was placed in this study. Raphael was placed in this study a year ago (April 2017), I was wondering if there was a way to know how his trial is going. Today I had a talk about this trial, and came out more worry than before. Right one I am an active person and able to do most things – a few adjustments at this point but active. I am scare that the trial will reduce my quality of life, and unsure if it will provide me with a better prognosis.
Based on my current state the prognosis is around 3 years life expectancy…
Any advice, especially if you have done this trial would be much appreciated.

[rar]

No one can guarantee how any one person will do a particular drug. In my case 4 years ago I had very high risk MDS with an expected life span of 5 months with a 4% chance of living 3 years. I tried an experimental drug that in 2 months reduced my blasts from 15% to 2%. This allowed for a transplant. I have been MDS free since then. I did get GVHD which has been plaguing me since the transplant. I am on a drug that seems to be helping the GVHD.

Ray

[Author]

Posts