AML successful treatment
Happy New Year! I want to share a happy treatment update for my wonderful response to Venetoclax and Dacogen (similar to Vidaza) for treatment of my AML. When I was diagnosed 3 years ago I was considered too old for transplant at age 78 here at the Mayo Clinic. I went into remission after my first cycle of treatment and have now stayed in remission for 3 years. My treatment has been ongoing and my team here has tweaked my routine several times to reduce side effects. Currently I am on a 5 week cycle of Venetoclax for 7 days at the same time I get Dacogen infusions for 3 days (recently reduced from 5 days). I will continue on some treatment routine as long as it is working. In the meantime I am enjoying a full life with family and friends although still taking precautions (weekly blood draws, avoiding folks with colds, etc.) .
I have learned a great deal throughout this period, including the variability of patient responses that can occur due to so many factors (genetics, other health conditions, etc.). I have also learned that there is at least one other patient here who is closing in on 5 years of remission with a similar routine! I am sharing my story to encourage you and wish all of you good outcomes as you face your treatment challenges.
Linda
Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
You are most welcome. Do let us know how the Transplant team meeting goes! The folks at Stanford in Palo Alto, CA had a lot of information and a plan already when I met with their team. Gave me a lot to think about. I will be honest it was overwhelming at first. I am sure you have someone going with you, right? My friend took notes and asked questions too; having someone with me was incredibly helpful. She heard and understood things I didn’t hear or understand. Best wishes and prayers going out to you 😉
Treatment for aml
.with chemo...wbc2.54. Platelets 51.ooo
...getting nervous
.how to bring wbc up.any information greatly appreciated
Hi @bettersleep68 It’s not unusual mid cycle for blood numbers to drop. Basically, chemo targets quickly dividing cells, such as cancer cells. But it’s not discriminatory so it can impact all of the rapidly dividing cells such as red/white/platelets, mucosal lining of stomach, intestines, mouth, hair follicles and nails. During mid month the drop reaches a low point called neutropenia or nadir. At least for me, that was several days of low mental and physical energy. Then the numbers start to climb again, just in time again for the next round of chemo.
It’s not uncommon for a drug such as Neupogen or Neulasta to be administered the day following the last day of a chemo round. These meds can promote faster neutrophil production. These WBC’s are important for fighting infection.
During this time of neutropenia, be vigilant for any sign of infection such as a fever. If you develop a fever of 101.3 let your cancer team know right away.
Has your doctor mentioned an injection of Neulasta?
That is so true about having someone with you. Although I’m an RN, I am also now the patient & that changes things!
My husband will be with me & we will both be taking notes!
I’ll keep everyone posted. Thankful to have found this group.
Diane
Hi Diane. I wanted to followup to see where you are on the BMT schedule. I know you were having a consultation in April with a tranpslant team. Have you had your transplant yet?
Hi Lori!
I just finished 2nd out of 3 Dacogen rounds. I have a consultation with the transplant team at Methodist TX Medical Center this coming Tuesday the 13th. Then my Dr wants to do another biopsy on the 20th to see how things are looking before the last Dacogen round. He thinks the treatments might’ve been a bit strong for me. After the first round, my white cell count dropped really low. Somehow I got a blood infection which landed me in the hospital for 9 days! I sure don’t want to go through that again!
Anyway, have no idea what to expect at the BMT consult. Keeping an open mind & enjoying feeling better. One day at a time!
Hi Diane. Glad to hear you’re doing better after that infection! One of the pitfalls we deal with when our white blood count drops during treatment. It leaves a person pretty vulnerable to infection, whether bacterial, fungal or viral. I can sure empathize with the hospital stay and the amounts of IV antibiotics you had to get you through those 9 days. Better living through chemistry, right? My husband took a photo one day of the piggy-back IVs. New record for me with 18 bags! 😀
Let me know if you have any questions after your conversation with a BMT doctor. They’ll be giving you a lot of information and it can feel overwhelming. I know your husband will be along as a 2nd set of ears and your support staff for Team Diane. 😁
It can also be helpful to have a little notebook along for taking notes and for the list of questions you might have. I found that having a notebook (or my phone) helped me keep track of my questions so I could go right down the line without getting sidetracked. I’m a, “OHH look, a butterfly” kind of person. So having the notebook brought me back to reality 😁
If interested here are a few questions to give you an idea of what you may want to ask at your consultation.
Am I good candidate for a bone marrow transplant?
What tests or evaluations will I need before the transplant?
How should I prepare physically and emotionally for the procedure?
Can you explain the steps involved in the bone marrow transplant process?
Will I be required to stay near the clinic for a period of days? Will I be inpatient or outpatient?
What type of transplant is recommended for my condition (autologous vs. allogeneic)?
What are the potential risks and complications associated with the transplant?
What side effects should I expect during and after the procedure?
How will you manage any complications that arise?
What is the expected recovery timeline after the transplant?
What kind of follow-up care will I need post-transplant?
How often will I need to come in for check-ups?
What support services are available for patients and families during treatment?
Are there resources for financial assistance or counseling?
How will the transplant impact my overall prognosis and quality of life?
Feel free to add your own!
Let me know what you find out, ok? ☺️
Thanks Lori! Those are all great questions & I plan on asking all of them. My husband is also a great question asker.
Will keep you posted.