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Acute Myeloid Leukemia (AML) - Treatment of 75 year old is working!
My 75 year old husband was diagnosed with AML on 7/19/23, after one month of worsening shortness of breath. He was scheduled for a cardiac catheterization but the surgeon called it off due to my husband's low blood counts. He suggested that he see a hematologist.
The hematologist/oncologist performed a bone marrow aspiration but was unable to take a tissue sample due to the deterioration of the bone marrow. The preliminary study indicated that the leukemic blasts were at 90%!
The following Monday, they started IV Vidaza. Given his age, the hematologist/oncologist opted for a less aggressive chemo. He also took chemo by pill (Venetoclax), He had 5 days of Vidaza but continued the Venetoclax.
The molecular studies of the bone marrow aspiration came back and showed that the mutations of the marrow cells were not targetable.
He also had weekly blood transfusions - 2 units of packed red blood cells and 1 unit of platelets. He had a reaction of rigors (shivering) to one of the platelet units so from then on, they predosed him with a steroid, benedryl and tylenol. No further issues.
On 8/14/23, his oncologist told him good news - additional molecular studies identified the IDH1 mutation, which is targetable. He drew another bone marrow aspiration. Also, his blood counts showed that his platelets were responding - 57000 vs 2000 at the start. He told him to stop the Venetoclax.
On 8/17/23, the oncology office did a blood count. The oncologist told him that he is in remission. I asked the dr. what that meant. It meant that instead of 90% blasts, he was down to less than 2 or 3% blasts.
On 8/18/23, he received 2 units red but no platelets.
We went back on 8/21/23 and the dr. said that he put in an order for a chemo pill to target the IDH1 mutation. Blood drawn and platelets were up to 140,000.
Molecular study on second bone marrow aspiration showed .3% blasts.
A lot of details, but we are cautiously optimistic. We have gone from no hope to some hope. We realize that his status can change at any moment.
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Good morning, @pegsue23. I’ve been thinking about you and your mom and wondering if she met with her new hematologist. Was she able to start treatment for her AML?
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1 ReactionHello Lori. Mom ended up in the hospital with pneumonia (she also received 2 units of blood while there). She missed the appointment with with the new doctor, now there’s no availability until November for a new appointment. We finally spoke with her original doc. Communication is still terrible with the office there. It’s taken two weeks to get treatment started. She’s had her first two doses of venetoclax and will start azactinine shots on Monday. I’m hoping she will tolerate the medicines enough to finish. I will post an update after she begins the azactinine. Thanks so much for checking on her!!
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3 ReactionsOh gosh, your poor mum! I’m sorry to hear she developed pneumonia. It’s really diffcult to stay healthy when her immune system is seriously compromised. The 2 units of blood will help give her some energy but won’t do anything to replace healthy white blood cells. So she’ll really need to continue avoiding catching colds, flu, covid. Masking will be vital for her when she’s out in a group of people or close contact with friends, relatives, etc.
The positive news is that she’s started with the venetoclax and will be getting the azactinine soon. To do nothing would allow for the AML to progress rapidly. The immature white blood cells would continue to proliferate, crowding out the red cells. She’s already had 2 units of red blood which would become more frequent without the intervention of the meds. So I truly wish her well with her new treatment plan. It’s much less aggressive than having the intensive chemo, which is standard for AML.
I know this is scary for both of you. But these treatments can work as we’ve seen with the news from @ccleschats who started this discussion. Her 75 year old husband had AML and was treated with the same meds as your mom.
Keep in touch and give your mom a hug from me! ☺️
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2 Reactions🤗🤗Thank you so much for the encouragement and wealth of information you provide for everyone here! I will post with new updates! We are so hoping the treatment will give us more time with our beautiful mom!❤️
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2 ReactionsUpdate: My husband is still in remission. He finished up his second 7 day round of VIDAZA and started taking TIBSOVO at the same time. TIBSOVO is the target medicine for IH1. Other than fatigue, he is doing well. Blood counts holding in the low normal to high normal depending on which count. We continue to be cautiously optimistic.
On Labor Day, we saw our immediate family for a few hours in a sparsely populated restaurant near our daughter's. It was so good seeing them in person.
Thank you all for your supportive reactions and comments.
Hi @ccleschats! That’s wonderful news about your husband’s continued remission. Pfhew, huh? That’s the goal. Those meds can work miracles and the targeted drugs are quite amazing. I had to take some myself…zeroed right in on my mutation to keep it from proliferating! Better living through chemistry. ☺️
Those little bursts of normalcy such getting to see family are great morale boosters. I know I don’t need to remind you, but I will because I love to nag…haha…N-95 masks are vital to your husband’s continued health while he’s in treatment. Those low wbc counts will leave him immuncompromised.
Thank you for sharing such a positive message with us. These are the stories that help so many other members who are concerned about taking some of the medications which can ultimately help them significantly. Of course there can be risks. But without the meds, there is no reward either. So thank you again for sharing.
How many more rounds for you husband and any side effects?
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1 ReactionThis gives me hope. I have been diagnosed with CMML border line AML. I have 6 mutations. You are all well versed on this than I am. I will have to get a list of these mutations or will it scare me. lol.
I am on hydroxurea and it has brought my white cell count down from 50 yo 23 within a week. After that I will be going on 7 day chemo injection ascidadine( ? Never get it right) and a chemo pill. Hopefully I will do ok. I will take note of your chemo treatment vidaza and ventetoclax. Hope I have it right. For all I know I might be getting one of these. I have to do my homework like all of you have. Thank you for this info and I am so happy for your remission. God bless.
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