AML successful treatment

@jacklyn, I can so relate to the panic and the feeling of over-whelmed when I saw the list of meds I needed to take for my BMT. Until my diagnosis with AML and then the BMT, I rarely even took Advil! I joked with my BMT doctor that the only thing in my medicine cabinet was Vit D3! But I took everything faithfully through both the AML/BMT drama. Those meds got me through the worst times of my life. Now the only prescription drug I have to take routinely is a very low dose statin. I mentioned to another member this morning that we and our doctors have to weigh the rewards/risks with meds. These meds were developed for a reason and they can work well.

I’m so relieved for you that your sister in law is able to be your angel through this challenging time for you! No matter how strong you are, it is comforting to have a lifeline. You have one here too! ☺️

Thanks do much Lori. I feel more confident that you have had experience either all these meds. I have a fear of pills and when I received all of these from the pharmacy at first my anxiety went through the roof. I sm on antidepressants and I was so afraid they would interact. However the oncology pharmacist has been do reassuring and I trust they know what works as well as my oncologist. It was so overwhelming at first and if it wasn’t for my sister in law picking me up every morning I don’t think I would have gone. She is my angel that God sent to me and keeps me in line about my treatments and stay positive and comes to every doctor appointment too with my oncologist. Thank you again and keep me in your prayers. You are a wealth of information.

Hi, @jacklyn! Thank you for the update! Well, your first cycle of V&V is complete…first step to getting this AML under control. During the next week or so, as your oncologist mentioned, you will see a decrease in your blood counts. The chemo is designed to interfere with rapidly dividing cells like cancer cells. However, it’s not discriminatory so it also can temporarily kill off blood cells until they start regenerating about mid month in the cycle. Occasionally if the drop in platelets and red blood counts are too low, transfusions may be given to help bring levels to a more normal level.

And of course, as you already know, with the all important neutrophil level being low, that puts you at a risk for infections from bacteria, viruses and fungi…so your doctor has put on you key meds to help keep you safe. I was on all of those that you listed. They kept me safe, along with my mask, for a long time! I know it feels like you’re a walking pharmacy right now but it’s an all important temporary immune system for you! As we joke in my house…Better living through chemistry! 😅

One thing that also really helped keep my guts happy through all of the chemo was to have daily servings of non-fat plain Greek yogurt. I’d add fruit or a tiny bit of jam (and a teaspoon of ground flax) to make it more palatable. It really helped keep my intestines happy and added protein to my diet.
Fingers crossed for improved blood numbers so you can have the BMB to check your progress. Sending positive vibes for only good news…will you let me know please? ☺️

Hi Lori: it’s been awhile since I wrote to you. I just finished cycle one of venetoclax 14days and vidaza 7 days. With infusions as part of the treatment and pill form. I am off this week of both medications. I am waiting to do a blood test this week to see if I can have a bone marrow biopsy to see how the treatment is doing. My blood counts after my treatments were my red snd white ok but platelets 19. My oncologist did warn me your counts will go down at first. So I hope this week they come up so I can do the BNB.
I also was put on valaclovir 500mg twice a day and
Lefloxican 500mg antibiotic and pasconazole x 3 which is 1000,00 and had to be approved by the government. I pay nothing. I live in Quebec Canada. I was put on all this because of the high risk of infection from taking venetoclax. Have you heard of any of these drugs. I am 77 and not a candidate for transplant.
I feel so sorry for the dad who caught a cold. I am just wondering if they gave him medication to help the risk.
Have you

I am sorry to hear about your dad. I have AML and just finished my first cycle of ventoclax 14 days and vidaza 7 days. Had to have two blood transfusions as well. Going for a blood test and bone marrow biopsy if my counts are stable. I was also put on valaclovir 500mg twice a day and levofloxican 500mg and pasconazole which is very expensive to help keep infection away because of the venetoclax. Did they put your dad on any of these medications. They help protect you. Not saying you can’t get a cold.

@tawakol Oh golly, this wasn’t the news I was expecting to see about your dad. AML can be such a tricky beast and treatment isn’t a ‘one size fits all’; What works for some patients may not be the magic for others. We’ll be optimist that this new treatment plan will help reduce you dad’s blast cells and get him into a more manageable situation. Don’t lose hope…my blast cells at the time of diagnosis were 85%.

What an unfortunate time to get a cold. Keep an eye on his temperature if he’s at home. Like you mentioned, with his lack of immunity he is very vulnerable to infections. So if his temperature gets to 100.3 make sure there’s a call into his oncology team for direction. That can be an indication of an infection.
Sending you a hug in support. I know this isn’t an easy time as a caregiver. When you get a chance, please let me know how your dad is doing on his new treatment, ok?

@loribmt hi , I hope you are doing well !
Firstly, I am sorry for late reply.

It's a while since we changed the treatment plan a little. We have moved to a governmental hospital to take his under social insurance where they don't provide Vidaza , we take ARA - C instead, with venclexta. Unfortunately after 3 cycle, his body doesn't respond positively: WBC got high numbers greater than 55000, blast cells 91 % .

1 week ago , we also changed the treatment plan to use combined ADRYAMAYSEIN 1 dose each 14 days and a 14 consecutive dose of ARA-C AND STOPPED entirely The VENCLEXTA, but count is still increasing, doctors seem to have no additional solutions.

Another important note, He caught a cold, cant stop coughing, which effects him badly in absence of immunity.

Hi Linda, I am 70 and have 3 mutations, Tet, ASLX1, and Jak2. I did not know anyone could have more than me, but sounds like your husband found a few more! Can I ask how long it took him to move into AML from initial MPN diagnosis? My ET diagnosis was almost 3 years ago and I have been on Pegasys ever since. Wishing you both God's favor in all this.

Linda, what a joy & blessing to hear part of your journey. My 74yo husband was just diagnosed 31days ago with AMML & 5 mutations. In his case, we are doing chemo cycles until he has the BMT. I wish you continued success. I trust my husband will share your good fortune.
Love & light
Joan

Thank you for all your replies. It gives me hope. Also to Laurie who is always there for us. She is a blessing sent to us by God.