Acute Myeloid Leukemia questions about treatment & survival

@sheridan2026 Your story of your relationship with your oncologist is so disheartening. It’s difficult to have a level of confidence in your treatment when you feel your doctor is being dismissive. Comparing your current treatment for AML with your prior and very positive, out-of-state provider is showing two very different approaches. I’m sorry you’re having to go through this! No wonder you’d like to change doctors. Your current doctor sounds a bit prickly and not very willing to work with you to gain your trust.

If I may though, from my own experience with AML, blood numbers can drop considerable through each cycle, taking longer to rebound with subsequent cycles. Pegfilgrastim (Neulasta) is given once per month immediately following a chemo cycle. It’s longer lasting than the Neupogen which can be given daily. Doctors often opt Neulasta for a prolonged effect of increasing the neutorphils.

In the past though, you have had a better experience in your treatment with daily Neupogen injections. It would be nice if your current doctor would at least explain to you the reasoning behind opting for Neulasta over Neupogen. I see your next appointment is with his NP. Nurse practitioners are an integral part of our oncology teams and usually have more time available to answer questions. So you might want to chat with the NP about weighing these meds against the other. I know, it shouldn’t have to be this way…like pulling teeth to get good medical care. You’d like to be heard on your own merit! But it wouldn’t hurt to have a notebook with your questions to ask.

Regarding platelets, I don’t know if you’ll find this helpful or not but the American Society of Clinical Oncology (ASCO) guidelines emphasize careful patient selection to avoid unnecessary transfusions, ensuring that only those most likely to benefit receive them. Platelet transfusions are indicated for patients with a platelet count below 10,000/μL or those with higher counts experiencing active bleeding.

Your doctor is following the guidelines for patient platelet transfusions. Again, from my own AML experience, I only received platelets if my level was nearing 10,000, usually mid-cycle.

As we age our bodies have a more difficult time processing the medications. Fortunately the newer treatments for AML are of a lesser intensity and better tolerated by the body. But each round can still take a little more time to recover from.
I see you recently started Inqovi along with Venectoclax. This is one of the newer protocol that has been quite successful in reducing blast counts and bringing patients to remission. Years ago, this was not possible! So I hope you can strike a good accord with your doctor. At least from my perspective, you are getting up to date medical care with your doctor following current protocol.

What was your latest blast count? How’s your hemoglobin level?

@loribmt
I can understand receiving Pegfilgrastim if it worked , My counts just kept dropping and dropping after my cycle of 28 days and then delayed for another 2 weeks. Finally given
Neupogen injection. In my opinion 23 platelets is way too low to start a cycle.
To have your cycle delayed because your doctor will not give you a Neupogen injection is outrageous.
My treatment is very expensive, Neupogen injections should be given as needed, more expensive than Pegfilgrastim.
My new chemo was decided by my out of state doctor, I was not receiving this treatment before I went out of state. I am getting up to date medical care now only because I went of of state for my treatment. My doctor here has to follow protocol I don't believe he is when it come to my blood counts.

I just returned from my out of state I am still in remission, Doctor gave me a letter to give to the Doctor in my home state , it states actually what she asked him to do when I returned after my treatment and when I contacted her her to tell her he was not follow protocol .doctor called again called him to ask him to keep the blood counts that is necessary for this chemo cycles.
I was to start my next cycle Monday my appointment was cancelled for Wednesday I called to ask them to order
my pills so that I would be ready to start they refused , On Wednesday doctor was still not there he is never there I saw the NP nurse he said he would give letter to Doctor. and order my pill I start my cycle on Friday
It should be fun ride going forward now the they know I know what is in the letter.
I did received my neupogen injection on the 6 day as requested s, so far so good will will see. Before he would not give until my necrophilia dropped below 0.5 My next appointment in my chart was for 4 months . When I called, I still had to call abut platelets. I said that is a long time will you give me an appointment with the doctor for 4 weeks, she did!

@sheridan2026 Your story of your relationship with your oncologist is so disheartening. It’s difficult to have a level of confidence in your treatment when you feel your doctor is being dismissive. Comparing your current treatment for AML with your prior and very positive, out-of-state provider is showing two very different approaches. I’m sorry you’re having to go through this! No wonder you’d like to change doctors. Your current doctor sounds a bit prickly and not very willing to work with you to gain your trust.

If I may though, from my own experience with AML, blood numbers can drop considerable through each cycle, taking longer to rebound with subsequent cycles. Pegfilgrastim (Neulasta) is given once per month immediately following a chemo cycle. It’s longer lasting than the Neupogen which can be given daily. Doctors often opt Neulasta for a prolonged effect of increasing the neutorphils.

In the past though, you have had a better experience in your treatment with daily Neupogen injections. It would be nice if your current doctor would at least explain to you the reasoning behind opting for Neulasta over Neupogen. I see your next appointment is with his NP. Nurse practitioners are an integral part of our oncology teams and usually have more time available to answer questions. So you might want to chat with the NP about weighing these meds against the other. I know, it shouldn’t have to be this way…like pulling teeth to get good medical care. You’d like to be heard on your own merit! But it wouldn’t hurt to have a notebook with your questions to ask.

Regarding platelets, I don’t know if you’ll find this helpful or not but the American Society of Clinical Oncology (ASCO) guidelines emphasize careful patient selection to avoid unnecessary transfusions, ensuring that only those most likely to benefit receive them. Platelet transfusions are indicated for patients with a platelet count below 10,000/μL or those with higher counts experiencing active bleeding.

Your doctor is following the guidelines for patient platelet transfusions. Again, from my own AML experience, I only received platelets if my level was nearing 10,000, usually mid-cycle.

As we age our bodies have a more difficult time processing the medications. Fortunately the newer treatments for AML are of a lesser intensity and better tolerated by the body. But each round can still take a little more time to recover from.
I see you recently started Inqovi along with Venectoclax. This is one of the newer protocol that has been quite successful in reducing blast counts and bringing patients to remission. Years ago, this was not possible! So I hope you can strike a good accord with your doctor. At least from my perspective, you are getting up to date medical care with your doctor following current protocol.

What was your latest blast count? How’s your hemoglobin level?

isn't 20,000 platelets low—well below the usual range of about 150,000–450,00,
Why then does the critical lab notifies the oncologist if my count is under 20,000 that I need an infusion ! The threshold in the the first 7 months was 16,000,
That is how I find out I need an infusion on my chart!
Is this an example of different thresholds oncologist have for patients!

I am receiving chemo as my maintenance plan, my out of state dr gave me a letter to give to my oncologist to give me an infusion if my platelets drop below 20 and to keep my neutrophil at 1 or above.
It isn't me that is making these decision but it is me that it trying to make sure my oncologist follows this protocol
yesterday I had to call and let them know my hemoglobin was low. I am going for an transfusion today I have to have 24 hours notice to receive it close to otherwise I have to go to the hospital
I called yesterday at 2pm .I still could not get it close to homeI have to go to the hospital that is why I don't wait for calls that never come.
Called my ombudsmen every day this week to change doctors this has been gong on since Aug 3, even their no response.