[Paul Dyer]

Hi Shelley,
I would urge you to get the genetic results to a doctor at Center of Excellence. Depending on certain mutations, clinical trials may be your best hope. Only phase 3 trials involve placebo vs. drug, phase 1 & 2 trials are drug only, but you must meet criteria to join. Trials are the future to treatments for disease. I did 2 different trials before my allo transplant, and I believe they are the main reason I am alive!

[Paul Dyer]

Hi Carol,
I had a clinical trial of venetoclax for 1 week before my transplant. As it was a trial, no insurance was involved. Sorry!

[Paul Dyer]

Rose,
So good go hear things are progressing for you. From here on out, it’s a slow and steady battle. Remember, every little victory is one step closer to overall success!

[Paul Dyer]

Hi Rose,
I am at day +158 from my allo transplant. I had a RIC (reduced intensity) chemo, but also had a clinical trial of venetoclax during conditioning.
I am a 50 y/o man diagnosed July 2018 with the dreaded TP53 mutation.
Every transplant is different, but I was released from the hospital the day after transplant! I did not experience the extreme fatigue or intestinal problems, but did have some nausea in the hospital.
As time progresses, it is hard to accept the small increments of progress. I have been cooped up in my home for almost 6 months (winter in Maine!). For the second time I am on prednisone to alleviate graft vs host disease (gvhd). I am happy that my 100 day marrow test showed no disease or mutation. My 180 day test approaches quickly, fingers crossed.
It is my understanding that it will be a full year from transplant before I can expect any type of normal.
Take each day, fight the current battles, enjoy the small signs of progress. Recovery is a slow process! Feel free to ask me about any of my experiences. Good luck, God bless!

[Paul Dyer]

Besides the white count, there are 5 subcategories of white blood cells.
Neuts, Lymphs, Monos, Eos, and Basos.
(Remember the phrase- Never Let Monkeys Eat Bananas). This is the order from most to least of these cells on your system.
Each type of cell does different things within your system to protect your immunity. Some deal with bacteria, some with fungus, and some deal with blood coagulation.
Each of these should be listed on your CBC, with standard ranges included.

I am just a patient who has had a transplant and this is as far as my knowledge goes. Ask your oncologist for more info…

[Paul Dyer]

I am 130 days post SCT. What are the symptoms of your gvhd? I have been having oral gvhd for a few months now, as I am weaning off tacrolimus. My blood numbers are all still low, so I can’t offer you any info.

[Paul Dyer]

Unfortunately, I don’t have much insight for you. My diagnosis/treatment/transplant happened so quickly. I was in very good shape when diagnosed. I had no problems with the clinical trial/treatment. The drug APR-246 (Prima-1) is now in its phase 3 trial. I was involved in the 1b/2 phase. It is showing great promise to a mutation (TP53) that has had poor success to date. The trial is only happening at a few “centers of excellence” such as MD Anderson, Moffitt Center, Dana Farber? I hope this info was of help, and wish your Dad the best.

[Paul Dyer]

I am 50 and was diagnosed July 2018. At the time I had pancytopenia, all counts low. Night sweats were common for me then, as well as too easy(weight loss), and some fatigue. I worked out several days/week also, as well as a physical job (installing hardwood flooring).
As a result of my mutations (including TP53) I had a transplant in November 2018. Since, the night sweats are gone!

[Paul Dyer]

Hi Donna,
I am 50 y/o male, diagnosed with high risk poor outcome, multiple mutations, including TP53.
I participated in 2 clinical trials pre transplant. The 1st was with a drug called APR246 & Azacitidine. The 2nd trial was 1 week of a drug called venetoclax, just before transplant.
I am at day +109 now. I am praying these trials keep me from relapse, which is very common with TP53.
Best wishes!
Paul

[Paul Dyer]

Hi Amy,
I have (had) the TP53 mutation. The only caution I would throw out there is that in 2016 APR246 was not being used as a trial drug. It has shown unbelievable promise, with 80-100% success rates. The internet is filled with information from the past. However, there really is hope for the future. Go to a Center of excellence. Find out about clinical trials. You won’t read much about their stats, as you will be making them. Some of the gloomy stats of the past just don’t apply now. Be careful with the internet! – Paul

[Paul Dyer]

Kathy,
I just had my 4th bmb, none with sedation, just lidocaine. You feel th pinch of the needles for the lidocaine, and pressure/burning for the actual marrow draw. It’s not horrible pain. I guess it all depends on how you deal individually. Hope my experiences help!
Paul

[Paul Dyer]

Hello,
I am 50 y/o male. I had my transplant on Nov 3 2018. I am at day +108. Some days are better than others. I try to go for walks, but motivation is hard to come by. A few days ago I actually tried walking/jogging combo. I have been exhausted since. It is a rough process and a long road bac for sure.
Best wishes,
Paul

[Paul Dyer]

Hi,
I am a 50 year old male. I was diagnosed in July 2018, high risk, poor outcome, multiple mutated genes, TP53 mutation. After 2 months clinical trial of APR246 + azacitidine, I had an all o transplant on Nov 3 2018. As of today (day +108) I am still alive! I had my 100 day marrow test and the results are very encouraging. Blasts less than 1%, and no evidence of TP53 mutation. I am still awaiting chromosomal results.
The entire process is not easy though. The actual time in the hospital for transplant is long, and you may get sick from the chemos. Once released, different challenges arise. Isolation from the rest of the world is very hard. Other challenges have been long term distaste for many foods, mucositis (2 weeks of sore throat), and gvhd. GVHD has come as rash, and most recently oral (my mouth gets sores and is sensitive).
But, the positives far outweigh the stats of my TP53 mutation prognosis. Less than 20% OS (overall survival), and usually relapse of disease within 6 months.
Transplant side effect and results are very individual, and allo transplant is different than auto. Best wishes to you!

[Paul Dyer]

I’m 50 male and was diagnosed July 2018. Cytogenetic testing of marrow showed multiple mutations including TP53. I did a clinical trial of APR 246 + azacitidine for 2 months then trial of venetoclax just before transplant on November 3 2018. Go to a Center of Excellence! Depending on your MDS risk and outcome, there are many options.

[Paul Dyer]

I was diagnosed in July 2018 with high risk poor outcome multiple mutations including TP53. I am a 50 y/o man in excellent shape at time of diagnosis. I immediately started a trial of APR246 & Azacitidine. After 2 months my blasts went from 9% to less than 1%. I then had reduced intensity allo transplant, with a trial of Venetoclax pre transplant.
I am currently at day +83 and looking forward to my day 100 bone marrow test with both hope and severe anxiety.

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