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Dacogen/Venclexta not working?
Hello,
My name is Melissa. I'm a 47-year-old wife and mother of two living in Alabama. Some blood work related to a recent bout of pneumonia revealed I have AML. The diagnosis was 8 weeks ago. The plan was to do 5 days of chemo (Dacogen) with three weeks off, until I reached remission. My doctor in Huntsville and the transplant doctor at UAB (Birmingham) seemed confident three rounds would do it and by then a donor would have been found for a BMT.
With no family matches, we're putting our hopes in the registry. Ironically, I was in the registry as a donor and matched with someone last year. Fortunately, they found a slightly better match to go with. I shudder to think what might have happened if they got my janky bone marrow.
Unfortunately, I'm finding cancer and cancer treatment don't always go according to plan 😏 After one round of Dacogen a bone marrow biopsy showed no change in the level of cancer. We had to delay treatment due to my counts being too low but eventually round two was also in the books - and my awesome doctors added Venclexta to the mix.
Today, I found out there's still no change. It's not getting worse. But, it's not getting any better. Since remission and transplant are the goal, they're now talking about forgoing anymore Dacogen for a hospital admission and more intensive chemo.
There are a few support groups in Huntsville but most seem to be devoted to breast cancer and/or meet during the day. I work full-time, am trying to keep things as normal as possible for my 7 and 11-year-old, and doing some caregiving for my mom who has Alzheimer's. Basically, I am losing my mind.
So - that's where we're at. My question (buried in all this) - is this normal? Has anyone had the Dacogen/Venclexta combo fail to make a dent? If so, would anyone be willing to share their experience with the more intensive chemo for AML? My brother-in-law underwent incredibly powerful chemotherapy for a rare and aggressive cancer (not leukemia). While he did live another 10 years, the treatment left his kidneys and heart severely damaged.
Thank you in advance to anyone who made it this far. I am not known for brevity 😉 Pics of my crew who are my reason for reaching out (serious introvert) and for fighting this with everything I've got 🧡
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Hi @stevefenton
Thanks @loribmt for the introduction!
My 65 yo, healthy and robust husband is 4 months post his stem cell transplant. He was diagnosed with a secondary AML with a high risk mutation in January of this year. He was lucky to have found it during a routine check up and had less than 10% blasts but was told the high risk nature of the mutation (secondary to having treated with chemo drugs for throat cancer 5 years ago) meant he had maybe 12 months to live. The team at Northwestern in Chicago treated him with 3 cycles of Venetoclax and Azacitadine. He was in complete remission after 2 cycles. The only chance of a cure was a BMT, which he was fit enough to endure. They found 3 perfect matches for him (all international). His labs show the transplant successfully grafted and the last biopsy shows no evidence of disease. He is now 4 months post transplant and on monthly maintenance Aza/Ven to keep him in remission. All other lab values are also normal and steady. He is only struggling with some clotting issues and gaining back some weight. After 2 years of remission they will start using the word “cured.”
We consulted at MD Anderson before the stem cell transplant at Northwestern and they concurred that this plan was the best option for long term survival.
We are newly retired and love to travel. He loves to fish and spend time on the water in Florida. We felt sucker punched at this news and want to return to our old life as best we can. We have new grandchildren we want to enjoy too. So for us, this was the best option. Even now, the doctor advises that the leukemia, if any cells somehow avoided the Aza/Ven cycles and strongest conditioning chemo prior to SCT that they can possibly give a patient, the cells can become resistant to the maintenance chemo Venetoclax. So we assess monthly now how is tolerating the maintenance meds and will recalibrate if necessary.
Sounds like you do your research and try to make informed decisions, bravo!
We do too. If you ever want to ask any questions about the BMT experience, let me know.
So happy for you that you recently were able to travel again and enjoy your life. One day at a time, as many of us say here in this group!
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5 ReactionsHi Vickie, (@marlysmae) I haven’t found similar postings in the forum with your specific mutation. Sometimes the mutations simply aren’t listed. Your mutation is somewhat rare as you mentioned in a previous post. It put you in a higher risk of your MDS progressing to AML, which it did.
So your team of doctors at Mayo will now focus on getting that pesky trouble-maker under control!
The low neutrophil count is unfortunate so hopefully once that starts to climb again, you’ll be set to go for the transplant! Sounds like that’s the only obstacle right now.
Congratulations with two potential donors, that’s really encouraging news.
The goal will ultimately be to get you into remission and see an upswing in your neutrophils so that you can get on with the transplant. Do you know what new treatment you’ll be receiving in the hospital over your course of 10 days?
Vickie, from my pretty extensive experience at Mayo-Rochester, you couldn’t be in better hands! I was just there last week for a followup and amazed all over again with my outstanding care, even 5+ years post transplant. So while I know these little hiccups you’re going through are frustrating and can be discouraging at times, don’t lose the faith or hope in a positive outcome! Your Doctors and their teams have your back! And so do I…along with all of us in this support group who have shared similar, yet different BMT stories.
Please keep me updated along the way. And best wishes for successful new treatment! Hugs.
I wanted to make a comment about waiting for BMT. I met with the transplant Team at Stanford 1 month after my diagnosis. I told them I wanted to keep BMT as plan “B”. When I met the following week with mu Occ/Hem MD. He said that when my AML “turns south” it will do so quickly and plan “B” would not be an option. They did find 5 matches however as I mentioned before I will not be doing a BMT. I get weekly blood draws and have not reached “remission” since my first round administered at UCSF in April. Just can’t get my numbers up thus waiting 3-5 weeks between treatments. Waiting for latest BMB results. For now just finishing latest round of Dacogen/Venclexta.
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4 ReactionsHi Lori,
The plan is Cladribine IV (2hours), then 3 hours later, Cytarabine injection. Then another injection of Cytarabine 12 hours later. Also on the Venetoclax pill for 14 to 21 days, whatever I can handle. Has anyone else used these drugs?
Hi Mary,
How soon did the conditioning start after the last round of chemo? And was there 5 days of chemo before the transplant? So happy for you and your husband that he is doing so well! I hope that I can see the same results!!
Hi Vickie, My treatment for AML was Cytarabine along with Idarubicine. It is a combination of drugs given to kill off cancer cells and was highly effective. Your treatment with Cytarabine and Cladribine is meant to do similarly. The Cladribine interfers with the growth of cancer cells and eventually kills them off. I would think the goal of this protocol is to throw some heavier meds at your cancer cells/blasts to bring you into remission. From my understanding, the Venetoclax would then be a maintenance med to keep you in remission until the bone marrow transplant. The cleaner we go into transplant the more favorable for a positive outcome.
From my experience, with the stronger chemo, it will knock down your total blood counts over the course days. As you’re already experiencing, the need for caution to avoid infection is high. While you’re in the hosptial your team there will monitor you for fever or any signs of infection. That’s why you’re in for 10 days.
When you achieve remission, as soon as your blood counts show improvement/recovery, your transplant team would most likely suggest moving ahead with the transplant.
Wishing you great success with this treatment! It worked for me with my 85% blast situation. Better living through chemistry. 😅
Hi Vickie!
I noticed you also asking about the mutation Mecom rearrangement, which my husband had, along with deletion of chromosome 7.
Yes, I understand it is very rare, accounting for less than 2% of AML mutations diagnosed. And in the high risk category. So nice to meet you, but wish it was under better circumstances. Hope this helps you feel like you’ve got a “community” out here. It’s hard to hear the words “high risk” and “rare” when you are navigating a health crisis.
My husband stopped his Venetaclax and Azacitadine cycle (#3) about 4.5 weeks prior to starting his conditioning chemo, which was bufulsan and fludarabine. He received the conditioning chemo for 5 days, had two days of rest and then the cells transplant.
I certainly hope this next cycle of treatment is effective in bringing your blasts down and your neutrophils up! Thrilled to hear you have a donor too!
Lori is right, you are receiving world class treatment and even though AML can be tricky to treat, Mayo has the experience and is plugged in to the latest studies and clinical trials that inform them of their options for treatment to get you into remission and then a chance for being cured with a stem cell transplant!
Reach out if you have any other questions or just need an ear!
Mary
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2 ReactionsSteve Fenton Thanks for sharing I was dx with AML/ mutation with chromosome 11. not a good prognosis. I to went to Moffitt for second opinion due to a liver transplant and ckd. I was denied.
I went into remission with decitabine/ventoclax for a couple months now I am on carbine/ventoclax 10 days w/2week break. Hearing your story gives me encouragement as I will not be able to have the BMT. but hoping there are other meds for AML. I am waiting for results on my BMB like you I have a very low wbc.
Sounds like you have done a lot of research . I hope you continue to stay in remission/ enjoying living your best life to.
Hi @marlysmae I just wanted to pop in to see how you’re doing with the AML treatments. I know they can be pretty hard on the body but they also have a good track record for killing off the cancer cells. Are there positive improvements in your blood numbers? What’s your treatment plan going forward?
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1 ReactionHi @sennep, I wanted to followup after reading several of your replies. I know you’d been anticipating a stem cell transplant in September. Have you been able to go through with the transplant? Did you have your second opinion at MSK?