MDS with TP53 Mutation?

[Amy C]

Hello- does anyone have any feedback about MDS with a TP53 mutation? I know it is high risk. The overall survival rate is not promising 8-14 months if I read that right. Has anyone had any other longer success with treating this (themselves or loved one?) asking for my Father who was diagnosed last July.
He is being treated with Vidaza and Neupogen.
Thanks!

[Terri Erdman]

Hi Amy,
Your father was diagnosed before my husband but here is his info.

My husband is 58 and diagnosed with high grade MDS with extra blast and TP53 mutations on January 10, 2019. He was very active and in great shaped prior to diagnosis. He had 2 courses of decitabine. He continued to exercise and function normally during treatment. We even took our RV from WI to Louisiana between treatments!! He tolerated this drug quite well. No side effect, kept his hair and blasts dropped from 9% to less than 1%.

He received HSCT from our son on April 24th. He has had significant GI effects from conditioning, transplant and anti GVHD drugs. However, those seem to have calmed down. He is at Day +36, he has been home now for a couple of weeks. His bone marrow biopsy, taken last week, showed no blasts and all blood counts are either in normal range or trending towards normal. His medical team is very happy with results.

Right now his biggest issues are staying hydrated and fatigue. He has a lot of GI issues. He lost 15 lbs since the transplant. We know he has a long way to go.

Don’t get hung up on the numbers. Find an oncologist you trust, read as much of you can and make a leap of faith. This therapy is not easy.

[Amy C]

Thanks Terri
Believe it or not my mother had a bone marrow transplant for AML 5 years ago, she’s doing great now. Some gvhd too.
My Father with MDS is not a good candidate, maybe due to age. I wish your husband well, I know the Moffitt center is Tampa , FL. Is doing great things MDS TP53.
Amy

[Denise Fowkes]

My husband is high risk with blasts, and the TP53 mutation, has anyone in here responded to vidaza ?

[Amy C]

Denise- I did not see this message. My Dad responded to vidaza for about 9 months- same disease as your husband and tp 53. He is now not really well enough to take it, oncologist has stopped it and he has been getting blood transfusions, I am afraid those are also starting not to help his platelet levels and this is not good.
How is your husband now?
Amy

[Chelsea Clark]

The epidermis is the outer of the two layers that makes up the skin. The epidermal cells perform a barrier function in human body, protecting against invasion of bacteria and foreign particles and regulating the amount of water released from the body.

[herb]

I was diagnosed with MDS along with TP53 mutation about 2 months ago. I’m considered high risk with life expectancy of 8 months. Having Decitabine chemo treatment in hopes of getting MDS into remission so I can undergo stem cell transplant. Docs have not been optimistic (40% chance of remission then 20% stem cell survival odds). Hopeful I can beat the odds.

[Amy C]

Herb, good luck- I hope you get in to remission, the bone marrow (stem) transplant can work!
My father just started a chemo pill called Venclexa, I hope he has good results from it, because his
blast cells rose and he is now in AML Leukemia. Stay positive, drink papaya smoothies and protein shakes, tons of water. Prayers up!

[Judith Barnes]

I just completed my first 7 days of Vidaza, treatment-related MDS (from chemo for breast cancer), yes to TP53 but no excess blasts (bad news, good news). I ignore the survival stats as they don’t apply to me in particular. Each of us is unique. I’m too old (75) for a stem-cell transplant so I just have to hope for success with this treatment. Hang in there!

[Denise Fowkes]

Hi Amy my husband starts injection today, he had 2 courses of intensive chemo but didn’t work, fingers crossed this Will do something.

[herb]

Amy, how has your father performed with Venetoclax? The Decitabine therapy did not work well for me so they want me to begin a round of Decitabine and Venetoclax.

[Cheryl McCall]

I was diagnosed with Q5- in March 2019. I’m 67 and live in Texas near Fort Worth. My oncologist wanted me to try a chemo treatment (can’t remember which one) but I declined. In June I went to MD Anderson in Houston for a second opinion and they did a complete workup. Their tests detected that I also had TP53 mutation, something that my oncologist either didn’t look for or forgot to mention. The doctor in Houston told me that the chemo would have caused the MDS to develop into leukemia.

So I’ve been getting PROCRIT shots weekly now since March and my hGb is holding steady between 9 and 10. I have very mixed feelings about my oncologist. When my hgb got to 10.2 she said the insurance won’t pay for treatments if the hgb goes above 10. And I was just starting to feel really good. But three weeks later it was back down to 9.2 so I had PROCRIT yesterday.

[Ian Palangio]

Hi Amy – I’m a 46 year old with MDS and TP53 mutation – transfusion dependant, 3 units every 3 weeks. The TP53 mutation increases the risk in a group of patients and doesn’t necessarily mean any one patient will have lower life expectancy. For me, other than the TP53 I’m lowish risk so it is a watch and wait scenario for me to make the decision for a Stem Cell Transplant. For now the transplant is riskier than the current treatment of RBC transfusions.

[Amy C]

Herb- he has only just started, but another woman has been on it a year and doing well. Drink plenty of water if you start it. Very important. I hope it works for you.

[herb]

Further to my earlier post, I completed the 5-day Decitabine treatment and started venetoclax 8 days ago. So far, I’ve tolerated it well. Bone marrow biopsy scheduled in 8 days. Hope and pray blasts reduce from 11% to under 5% so SCT can be scheduled (anonymous donor has been located).

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