[bexar2120]

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.

[bexar2120]

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.

[bexar2120]

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.

[bexar2120]

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.

[bexar2120]

Yes, Kathy- most interesting that decision was made to discontinue Vidaza treatment. Never occurred to me to stop Vidaza. Anyway genetic counseling found no inherent risk for myself or family/children. Had Hem/Onc consult at M D Anderson Houston (May25 2023) for TP53 variant clinical trial. They performed bone marrow biopsy which gave me important information concerning future treatment decisions. They performed Next generation Sequencing for my variant and any other genes that were developing. received all results yesterday and glad to report all identifiable variants were lower limits/non detectable/ normal… for Now. Stop Vidaza,,,hmmmm. Definitely speak with my physician about stopping Vidaza in future. Currently. started Cycle 6 today and asked for a Return to Work letter; only work 20 hours a week as a part time driver for Enterprise car rental at airport. Stay Healthy and LiVe Life!! We just returned from Las Vegas this Saturday. I am 61 this Wednesday.

[bexar2120]

Well, have a consult with Genetic counselor and a scheduled appointment for consult at Houston- Mays Cancer Center downtown in mid May. I have High Risk MDS with a genetic variant, TP53. Purpose for the consult is to search for appropriate clinical trial.
Otherwise, Cycle 5 starts on Monday and will continue on till physician says clinical outlook has changed. Hopefully, Vidaza treatment stays effective for near term. No remission for this variant.

[bexar2120]

UPDATE: 03April 2023.I had an uneventful trip to Las Vegas; yes, in my mind, returning with half my bankroll is uneventful. It was an enjoyable 3 day trip.
So, started 5 day Vidaza treatment today and the preliminary blood work showed excellent improvement in my CBC blood indices. Hgb&Hct, Rbc’s Wbc’s and platelets are back to normal levels. The physician and I are very pleased and decided to stay the course with Vidaza.
Quality of Life: much improved this past few weeks. More energy and no side effect symptoms.
Most Important to Remember – Hem/Onc physician and I discussed option of continuing on to Allogenic Stem Cell Transplant. This may occur when you, the patient are stable and disease has not progressed to AML. MDS will eventually progress to AML.
One must reflect on whether to precede to ASCT; the study’s on Overall Survival rate after ASCT are not confidence boosting.
ANyway, wife and I have scheduled trips next 2 months and will enjoy our life. She retired from work this past Friday.

[bexar2120]

Mr. James, I am not in a Study – as of this moment. Only on the Azacitadine/Vidaza, but I expect to eventually be placed on Venetoclax if/when my High Risk MDS progresses to AML. I have a TP53 variant as well as other genetic irregularities.
My Hem/Onc physician informs me that MDS will eventually lead to AML. He stated that Venetoclax would be added to my regime when diagnostic testing indicated the Vidaza was no longer effective.
Side effects of Vidaza alone where fatigue, frequent urination and body temperature fluctuations. Also, the first two months, my blood indices dropped dramatically, but have rebounded this March.
This raises the question of: When Vidaza has promoted appropriate body response and blood indices are “normal”, should we have a discussion with physician to continue to a stem cell transplant with matched donor stem cells?
Myself, I am leery of using another person’s stem cells.

[bexar2120]

UPDATE: 14 March 2023.
Yes to Kate / Amy concerning the constipation. The colo/rectal surgeon repaired a fissure on my sphincters’ muscle and now, the OTC laxatives’ with prune juice have resolved that issue. Hemorrhoid’s are still present, but adapting to them.
Vidaza symptom’s have been fatigue, frequent urination and drowsiness during treatment cycle week. Much effort goes into staying hydrated with fluids.

Quality of LIFE: my preliminary bloodwork prior to 3rd treatment cycle showed slight improvement in blood indices. Enough so that I arm twisted my wife and scheduled a solo Las Vegas trip next week. Oh Well – she was emphatic that she would not retrieve me if I take a turn for the worse on this trip.

FYI: I read some recently released medical articles concerning new therapeutic drugs/trials in the pipeline for High Risk MDS/AML patients. Hopefully, they will garner FDA approval in the short term. Fact of the matter is High Risk MDS progresses to AML – This Happens When It Happens.

[bexar2120]

UPDATE: Well, the disease is making it difficult to Keep enjoying LIFE. The trip to Las Vegas fell thorough due to acute MDS related illness that required hospital admission. Testing found no medical illness, so, we attribute it to the MDS. I have had several of these instances since Oct 2022; most current was 15-18th Feb 2023.
My Hem/Onc said my Hgb/Hct would increase. I have completed 2 cycles of treatment, as Jean posted- hopefully, a few more cycles will improve these numbers. FYI: I have been receiving blood when my Hgb drop below 7 g/dl.
As far as Vidaza drug side effects- I have had ear congestion, fast heartbeat, fever, chills. They resolve themselves. So, it is just the disease doing its’ thing.
Last, the current medical condition affecting my daily life is Hemorrhoids. My Hem/Onc said this condition is common ?? among cancer patients. I will just say it began after Vidaza treatment started.

[bexar2120]

UPDATE: 17Jan2023. I just completed 1st cycle of hypomethylating agent ( VIDAZA) and it is 4 days since Day 7 injection. I have exhibited slight nausea as an only side effect; prescribed nausea medicine easily handles this event. The only complaint I have has to be fatigue from the severe anemia that I previously mentioned. It frustrates me that I am limited in physical activity/mobility- attempted to walk dog and did not make 200 steps. I had to stop and lean against sign post to recover. Physician states hemoglobin/hematocrit will rise during the course of treatment. Sooner the Better.
Anyway, We are adapting to this new normal; my wife ( caregiver) and I are soon departing to LV Nevada to continue enjoying our life. I will just be using a Scooter to enjoy our visit.

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