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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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After an AML diagnosis three years ago, and a BMT, I relapsed a year ago. I am now on Vidaza and Venetoclax. My secret hope is that I can hang on long enough for there to be a technological advance I can use. Please share information about advancements in preventing drug resistance with V&V and I will do the same.
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1 ReactionNot yet…but I will post as soon as she starts. Having a hard time getting the dr office to respond to requests for information after initial diagnosis. Waiting on a referral to go to a different doc for 2nd opinion and responses 🤦🏻♀️ The dr said enasidenib or palliative blood transfusions would the treatment path. After hearing and reading studies about the use of venetoclax and azactinine we’ve been trying to get answers from the doctor but they haven’t returned any calls. Very frustrating, especially since it’s a fast progressing form of luekemia. Hopefully we’ll know soon!
That sucks big time that she can't get a second opinion quickly. Does the doctor's practice have a portal? That's where I get some of the information for my husband.
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1 Reaction@timt347 My husband is no longer taking venetoclax now that they have identified a targetable mutation. He'll be starting the ivosidenib drug in combo with vidaza next week.
Best of health to you - sending wishes that the V&V combo work for you.
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2 ReactionsGood morning @pegsue23 It’s important your mom starts treatment very soon. You may need to be more assertive with getting answers from your mom’s doctor.
I know you’re thinking of changing doctors but time is of the essence. If that can’t be worked out within the next day or so, I’d suggest staying with the current doctor for the time being to at least get her started with the Enasidenib and then switch to Venetoclax and azactinine if necessary. But to be honest, from my experience with AML and your mom’s current blood numbers treatment, shouldn’t wait another day…timing is critical.
Did you ever hear back from the doctor??
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1 ReactionHello Lori - I got a call this morning for an appointment this Tuesday with the new Doctor, I’m hoping she can start treatment then. Of course, this afternoon I got a message from her current doctor’s nurse (too late for office hours today) to call back to go over a treatment plan. Mom wants to still go to the new Dr since we’ve had such a hard time getting responses from her original doc. I’m fearful that we may be too far behind already. Thank you so much for your encouragement!
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2 ReactionsThe practice does have a portal but I can’t even get the reply to get the code to get signed up for it. The communication from this office has been horrible. I’m guessing they must have staffing issues, which is a shame because we really like the doctor. We just got an appointment with a new doctor for Tuesday and will probably go with them. They sent us their portal info as soon as we got the appointment. I’m praying it’s not too late. Thank you!
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1 ReactionGood luck with the new doc!
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1 ReactionI’m echoing @ccleschats in wishing your mom good luck and speeding action with the new doctor. ☺️
Keep us posted, ok?
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2 ReactionsI definitely will!
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