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Honeybun Sat Apr 20, 2019 09:23 AM

Hi gang. I havent posted in years. I used to post under Honey. My MDS transformed to AML Aug last year. I had been on Azacytadine and Lenolidamide prior to that for a year. I was put in hospital almost immediately for induction therapy but it failed and I was sent home with two months to live. I researched a trial drug and was approved for a IDH inhibitor drug which was working amazingly and got my blasts from 76% to 13% but I did not achieve remission and it has now failed. It gave me 6 months. They are now thinking of Venetoclax. I was told if I do not have treatment I would have 2 months if I do go on Venetoclax I may have 6 months. Im stunned, all the reading I have done shows remarkable response even remission. Im not sure why I have such a low survival. I would appreciate any advice regarding the drug. Thank you


Neil Cuadra Sat Apr 20, 2019 02:30 PM

Welcome back Honey.

It's distressing to hear about your AML and your current prognosis. You're a fighter and a survivor, but it's obviously been tough, and it's still tough.

I'm not familiar with venetoclax. It goes by trade name Venclexta here in the U.S. and it's often taken with azacitidine, decitabine, or cytarabine. Are they proposing a drug combination like that for you?

The trial mentioned in this article last month was for patients averaging age 74. From your previous posts I think you are about 50, so that's in your favor.

If they are giving you a poor prognosis compared with successes that you've read about, it could be because of your particular treatment history, or they simply don't want to overpromise. In any case, they are opinions, not guarantees.

Have they discussed any clinical trials or other options with you, or is this clearly the best or only choice for treatment? Have you gotten a second opinion?

I wish that I could be more helpful. I'm sorry that I have questions instead of answers.

Honeybun Sat Apr 20, 2019 11:59 PM

Thank you, good to be back. Sad to see some of the ones I used to chat to on here are no longer with us. But good to see familiar names too.

I was on a trial that failed, im not sure of any others. Unfortunately my doc told me the news on her departure to go on two weeks holiday and there is no one at the hospital to ask, long weekend etc. I was supposed to have been put in last Thursday but I was not comfortable, I had too many questions, I felt pressured. The admitting doc was very annoyed with my hesitation. Im concerned now if I wait a week for her return that my blasts may increase too much they may say no. My blasts like my AML transition almost happened over night. I think if the survival rate was not mentioned perhaps I would have signed up on the hype of it being the new miracle drug. I think the doc replacing my doc has scared me.


Ps yes Im much younger then the trial patients on Venetoclax.

Honeybun Tue Apr 23, 2019 03:10 PM

Starting Veneyoclax
I spoke to the doc today. We will be starting Venetoclax as soon as tomorrow if there is a bed. The stepping up process will be done over days not months. Starting at 100mg on first day to 600mg on day 4. Normally it is up to 400mg over 5 to 6 months. It will also be in conjunction with 10 days of cytoterabine chemo injections at a lower dose then I had in induction chemo which I failed. I could be in hospital for a week due to the risk of tumour lysis which can be fatal. It is because of the dying cells being targeted releasing toxins amino acids into the bloodstream. I will have a very nervous wait of 1 or 2 months to see if it works. It can be that quick to get to remission. As per other member Alicekay who is down to 3% blasts. Boy have I had a rollercoaster ride and I think this is the end to my options. Im scared but have been inspired by Teddy Roosevelt to step into the arena again. My new mantra from Roosevelt.
"It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat."

Sally C Tue Apr 23, 2019 04:20 PM

Dear Honey,
What a wonderful quote - and brave, courageous attitude. Please see where I posted a message to you on Alice Kay's thread. Believe in Miracles because they do happen.
All the very best to you,

Neil Cuadra Tue Apr 23, 2019 05:30 PM


Drink lots and lots of water, so the venetoclax can do its magic! Good luck.

Sue&Dave Wed Apr 24, 2019 07:37 AM

Hi Honey - My husband started Venetoclax just yesterday. He had been on Vidaza since Feb. 2017 with stellar results. It has now stopped working - right on the '2 year' schedule. We somehow thought that because he had such a good response that he would be in remission longer than the standard 2 years that they tell you with Vidaza. He is now scheduled for transplant at the end of May. Because he will be doing a haplo transplant (no matches on the registry) they really want his blasts down to 5% or below, and they were at 6% last month. His hematologist suggested we try a short cycle - 3 weeks of low-dose 100 mg. Venetoclax, but wasn't sure if our insurance would cover it because it is not FDA approved for MDS. We were fortunate that it was covered - with a whopping $600 co-pay! but well worth it if it brings his blasts down. He is currently on his last cycle of Vidaza and taking the Venetoclax in conjunction with the Vidaza has wiped him out. We were very concerned about the tumor lysis associated with the drug, however our doc said because his blasts are so low anyhow there likely won't be a large dump of the tumor cells into his system (which is my layman's understanding of it). My best to you on this difficult road - but as many have already noted - you are a fighter and that means a lot with this disease.

Diana H Fri Jun 21, 2019 11:23 AM

My mother was a Ďlurkerí on these forums, she read frequently but did not post much herself. Because she got so much out of reading the forums I wanted to post in the hopes that the community can also benefi from her experiences. My mother was diagnosed with MDS in July of 2017 she did a few cycles of Vidaza and achieved a complete remission for a few months, in 2018 it progressed to AML and she started dacogen, she tolerated the dacogen less well than the Vidaza, after the dacogen stopped working (blast counts were steady around 97%) the doctor offered her to try venclexta with Vidaza. She did the ramp up for four days, but stopped treatment after 7 days because of extremely low blood counts. She did a few shots of granix to boost her white blood cell count, but these seemed to cause a lot of pain, unclear if it was from joints of bones of muscles, but it was unpleasant. She stopped treatment on Tuesday and started hospice care. She lasted till Thursday morning. Her blood counts, RBC, WBC and platelets were all very low prior to starting hospice. From AML diagnosis to death was about 10 months, MDS to death was about 2 years.

In summary the venclexta was very effective at getting rid of the disease, but caused pan cytopenia in this case. Depending on your tolerance for pain and what else you have going on, I hope this helps other people make their own treatment decisions. Iíll the to answer any questions over the next few days.

Diana H Tue Jun 25, 2019 02:08 PM

Venclexta 100mg for donation
I donít know if this is appropriate or not, but Iíll just put it out there. I have 209 leftover venclexta tablets. A bit less than two months supply. My mother had very good insurance, if someone else would like to try the medicine but cannot afford it send me a message. If this is illegal or immoral also feel free to tell me, I didnít spend a great deal thinking this through, try to be polite about it though, I have only good intentions. I do not ask for any payment or shipping payment. I just think these were crazy expensive drugs to just throw away.

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