MDS is a bone marrow failure disorder
MDS is a blood cancer
Learn More >

Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

Forum Replies Created

Viewing 15 posts - 1 through 15 (of 22 total)
  • Author
    Posts
  • in reply to: information help needed #67207
    bexar2120
    Participant

    Hello Ms. Dee Dee, I am rather surprised that the physician gave a number as far as life expectancy. When I asked my oncologist at Houston Med Ctr – Mays Cancer Ctr the response was ” hard to determine; disease is different in every patient’. I was there for two separate clinical trials and unfortunately there was no progress. We decided time to come home and let disease take its’ course.
    I gather from your post that you are not in the room with your husband and oncologist when medical diagnosis/information is being conveyed. MS. Janet’s post is spot on about site’s to inform yourself about his disease.
    Myself, I was/am MDS TP53 that progressed to AML TP53 (Oct2023). We have decided to continue supportive care ( blood/platelet transfusions as necessary ) and eventually to Hospice when the time arises. My only chemo therapy is Hydroxy Urea.
    I also urge you and your husband to prepare your estate. One more task to attend to when dealing with this disease.

    in reply to: type of treatment to start #67204
    bexar2120
    Participant

    Mike, resend your email or Do not mind speaking with you on phone, I have a land line. My email edcastor@sbcglobal.net. Just sitting at home giving the TV remote “heck”.

    in reply to: type of treatment to start #67199
    bexar2120
    Participant

    Yes Mike, since you ask a direct question, I will give you my response. I had option to take BMT route using donor cells from another individual. I chose NOT TO take this option. Background is that I am a laboratory professional and understand the complications from using donor cells. MY transplant doctor had performed this procedure on me using my own cells ( April 2017) and all was well until Jan 2023. It so happens that secondary cancers arise from BMT procedure- so you are monitored from that date onwards. I had no comorbid issues ( healthy in other words ), so that is why I had BMT in April 2017.
    Now, I am in AML and have exhausted national clinical trial option ( x2) and decided time to come home for supportive care. I will express that BMT was offered but, I chose NO. I place importance on quality of life; not wanting my family to become care provider’s for this disease. Life has been Good for US. Recently returned from Las Vegas accompanied by wife and adult children. Quality of Life!
    Discuss with your healthcare team your options and ask what the medical data says about overall survival rate after the procedure.

    in reply to: High risk MDS on second round of Dacogen #67198
    bexar2120
    Participant

    Ms. Donna, never been on DAcogen, but I have been to Houston Med Ctr – Mays cancer center for clinical trials for MDS that progressed to AML ( Oct 2023). Not able to find more time with the two separate clinical trials, so we decided time to come home. The AML will run its’ course.
    While in MDS stage, platelet and blood transfusions were par for the course, weekly actually. At this moment, I receive blood transfusion once a week; platelet count has held study.
    My healthcare team is supportive of my decision to continue with supportive care, which will eventually turn to hospice care. Time left is unknown with this disease. I might add that I have TP53 AML with complex genotype, we do not fare well as far as life expectancy.
    The pulmonary function is another chronic condition that coincides with the MDS. Terrible circumstances that ya’ll have to deal with. Myself, use a wheelchair/walker for any length of distance.

    Best of Luck to You and your Father

    in reply to: type of treatment to start #67174
    bexar2120
    Participant

    Mr. Mike, there are a variety of choices that can be taken. Myself, I was High Risk MDS ( TP53 ) that has progressed to AML. I have a complex genetic karyotype.

    I actually had plasma cell myeloma (2013) that was controlled by standard care of treatment until 2017. I was given option of bone marrow transplant since at that time, my marrow was healthy and I had no other medical complications. Other words. I used my own marrow.

    I have been monitored since April 2017 for Secondary cancer, which transformed to MDS TP 53 Jan 2023. Now I am at AML.

    You and your healthcare team need to discuss the medical /diagnostic results of your testing. Those bone marrow biopsies and blood draws, x ray/CT scans are to give ya’ll the information needed to make an informed decision that suits your goal.

    Lastly, you state your age and healthy condition. The Transplant specialist I had discussions with always said that time for the procedure is when your body showed disease under control and you have few comorbidities.

    in reply to: Vague prognosis #67080
    bexar2120
    Participant

    Myself, 61 y/o male. I also had MDS and thrombocytopenia; my counts continually dropped, and they were no where near normal range. Once the lower threshold at my facility was reached I received platelets. I will continue to receive blood and platelets transfusions, since I decided to receive supportive care and eventually hospice.

    As far as end of life growing near- that is what you should be asking the healthcare team!
    I have been on blood/platelet transfusions since November 2023. My diagnosed MDS progressed to Acute Myeloid Leukemia at that time.

    My advice is make sure you have his personal affairs in order; will, medical/durable power of attorney, directive to physicians, beneficiary on financial accounts, etc.

    in reply to: Living in a home with stairs #66908
    bexar2120
    Participant

    Ourselves, we downsized from 2 story to newly built one story. My disease was Plasma Cell Myeloma – Myelodysplastic Syndrome (MDS) — Acute Myeloid Leukemia.
    We decided to downsize; various reasons were my disease, not using second story, adult child moving to her own home.
    The comment about “having to move quickly” should be key in your decision making process. DO you travel “a distance” for treatment?
    We live in a city with Center Of Excellence for my disease; Local Dr said you have progressed to AML, so go to Houston Medical Center for treatment options. Now, would we consider selling current home and moving near Houston? Very unlikely, I have TP53 variant – testing for a second clinical trial at this moment.
    ANyway, do not hesitate if selling and relocating is in your best interest. Disease treatment requires lots of time at the facility. I spent 2 months in patient with wife in lodging.

    in reply to: Introduction #66850
    bexar2120
    Participant

    Hey, dysplasia medical term is increase in abnormal cell growth or development. Did Dr. say your platelets were not dysplastic?
    Myself, I had plasma cell myeloma and had auto stem cell transplant 2017. This eventually transformed to MDS ( TP53 variant) and now Acute Myeloid Leukemia. Eventually, the AML would occur.
    Low platelet count is part of my disease – receive platelet transfusions about twice a week. Do you have low or high platelet count?

    I have no idea about placing info at the bottom as you ask. Anyway, best of luck and talk/listen to your cancer care team. See if this reliable medical source is of any assistance concerning Dysmegakarocytopoeisis.
    https://pubmed.ncbi.nlm.nih.gov/9074719/

    in reply to: 6 months to live #66000
    bexar2120
    Participant

    Yes, the Standard care of Treatment is to add Venetoclax as a second drug. The scheduled bone marrow exam will give us clinical information to chose a treatment course. The choice is add Venetoclax OR qualify for a National Clinical Trial – but this hinges on clinical findings from upcoming bone marrow exam.
    Your at a good treatment center; we are headed to Mays Cancer Care Houston Downtown. Currently receive care in my hometown – Mays Cancer Care U T Health San Antonio Tx.

    We chose not to do bone marrow transplant with another donor’s stem cells. Quality of Life is most important for me – I do not want my family members providing home care!

    in reply to: 6 months to live #65996
    bexar2120
    Participant

    Well, all the medical journals/ studies performed I have read state a poor/dismal overall survival rate for High Risk MDS.
    I have High Risk MDS ( 61 yo male ) and current drug 5-Aza as apparently starting to lose effectiveness. We have a bone marrow exam at Houston Med Center ( Nov 2023) to chart a treatment path going forward.
    Listen to your cancer care team and consider and discuss National Clinical Trails. Understand that the treatment drugs eventually stop working

    in reply to: High Risk MDS w/TP53 Mutation – 7 months in #65995
    bexar2120
    Participant

    Yes, I had the same disease (MM) that eventually morphed to TP53 mutation MDS. Myself, I was 52 when MM diagnosis identified (2013)- MM treatment kept disease at bay until reoccurrence in April 2017. Then fortunate to use my own stem cell for transplant. Disease free until Oct 2022 when High Risk MDS identified by bone marrow exam. Unfortunately, a secondary cancer usually is expected after Auto stem cell transplant. You must understand that MDS will eventually turn into AML. There is no mention of treatment drug that patient is on.
    As far as “sugarcoating” – The overall survival rate is very dismal for the TP53 variant. However, follow the treatment advice of the Cancer Care Team.
    The wife and have to make a decision concerning my new course of treatment since clinical lab findings indicate 5 Azacytidine is no longer viable ( this is what occurs). We are scheduled for a bone marrow exam in Houston Med Center( Nov 2023) to provide information to continue with adding a second drug or even a National Clinical Trail.

    in reply to: Off revlimid Tp53 mutation #63283
    bexar2120
    Participant

    I expect they did a Bone marrow biopsy and noted TP 53 variant. I was diagnosed with TP53 variants (OcT 2022) as well other genetic abnormalities. Currently, on VIDAZA, 5 day injection / 28 day cycle. Complete Cycle 6 this Friday. I suspect it is a residual effect of the Rev. Question is_ how long will this last? Some one posted they had stopped treatment and were doing well with out the medication. Myself, it never occurred to stop an effective treatment. I went to m d Anderson Houston searching for TP 53 Clinical Trail for TP53 ( has poor prognosis). There results ( May 2023 ) showed that VIDAZA was , surprisingly, working very well. So, not eligible for Clinical Trial… At This Time. SO, great news that you are in a steady state of no AML progression.

    in reply to: Monosomy 7 not showing on second biopsy #63273
    bexar2120
    Participant

    Yes, Judy this will occur when in treatment. I had a Second bone marrow biopsy at M D Anderson Houston ( May 23 2023); being preemptive for clinical trial for my TP 53 variant with del -5q, del 7q. Well, received all the BM results yesterday and glad to report that results show “normal” – that blurb you have in quotation marks. My understanding is the MDS is all ways present- has not progressed to symptomatic stage thanks to Vidaza treatment ( Cycle 7 at this moment). Good Luck with the Aplastic Anemia treatment.

    in reply to: Revlimid Neutropenia #63272
    bexar2120
    Participant

    Yes Michelle, I had same initial outcome as you are/have experience. I have High Risk MDS TP53 variant and del-5, del-7. On month Cycle 2 and 3, severe neutropenia and anemic ( down to Hgb5 g/dl / Hct 13g/dl month 3). Cycle 4 my counts were all back to normal… as normal for a H R MDS patient. We decided to do dose/ days cycle reduction on Cycle 4 I believe. from max dose 7 day to current dose/5 day cycle. I am on Cycle 7 at this very moment. I actually had consult at M D Anderson Houston for clinical trial enrollment. They performed Bone marrow biopsy ( May 25 2023) that provided important information for upcoming clinical treatment decisions. Glad to say the Vidaza treatment is working for me. Staying the course with this dosage / 5 day cycle.

    in reply to: MDS patient who stopped treatment #63271
    bexar2120
    Participant

    Thank You for Your Courage in posting the personal decision to Stop Treatment! Palliative care is accessible to the brave souls that have made this decision. I will certainly take the pain meds when My Time Comes. I have High Risk MDS and it is only matter of time before progression to leukemia.

Viewing 15 posts - 1 through 15 (of 22 total)

Login

Login

Search Forums

Review answers to commonly asked questions or get answers to your questions from an MDS expert