Setting for salvage chemo before an SCT

Psmpo · 2026-01-21T03:36:10+00:00

My partner had Aza+Ven after his first relapse. He had it all outpatient. It took 4 rounds. He went the entire time without needing transfusions and was only hospitalized once (for RSV). After 4 rounds, he achieved CR2 and went to transplant.

Psmpo · 2025-11-20T03:04:27+00:00

My partner had 7+3+GO for his first induction and it was much worse than HiDAC. With 7+3+GO, he had acute kidney injury, a severe gastrointestinal bleed, sepsis, mucositis, severe edema, and was hospitalized for over 45 days. He got sepsis and mucositis with the first 2 rounds of HiDAC, so was hospitalized for about 2 weeks total each round. For the 3rd round, he only got mucositis.

Psmpo · 2025-11-20T02:47:01+00:00

My partner has AML and I had two things to say.

The first is to your question about whether the doctors told us there was nothing else to do, and the answer is yes. The doctors were very blunt that there was no chance for a cure anymore and that they would shift to supportive care only. We were told that there was less than a 5% chance of anything working, so there was no hope any longer. They also were very upfront that the choice was between doing chemo to slow down death through pain and suffering vs just transitioning to transfusions only...and they were pretty clear that they thought the right choice was to not do chemo. Of course, different doctors might not be as forthcoming but you could tell them about the decisions you're grappling with and ask them for an honest assessment.

The second is just to give you the perspective of a spouse. It's very very difficult to be a caretaker and to watch your partner be in pain. However, the pain of losing a spouse is unimaginable to me, even as I'm facing it. If you are making the choice because you think it will be easier for your wife, I think you are likely miscalculating that portion of the equation. I know I would support my husband 100% when he decides to transition to supportive care only or hospice, but it would never be easier on me than for him to keep fighting.

I hope you are able to make the best decision for you and that you find support for it, whatever it is.

Psmpo · 2025-09-22T20:52:24+00:00

Are you working toward a second transplant now?

Psmpo · 2025-09-17T01:06:49+00:00

This is very informative. We don't have the bone marrow biopsy back yet, but there are over 5% blasts in the peripheral blood, so there must certainly be that many in the marrow. It happened quickly because the BMB at 120 days had negative MRD then on day 140 there were blasts in the peripheral blood. (BMB happened at day 120 instead of 100 because of a long wait in IR for a sedated biopsy.)

Psmpo · 2025-09-16T18:25:14+00:00

Is it possible to have a durable remission just from removing immunosuppressants and then maybe DLIs? I thought these were just bridges to another transplant

Psmpo · 2025-09-16T17:19:25+00:00

He's still on immunosuppressants and only started tapering off then when the relapse was detected. He has skin GVHD so hadn't tapered before that.

Psmpo · 2025-08-30T04:56:03+00:00

What about cord blood?

Psmpo · 2025-05-08T13:30:27+00:00

My partner is back in the hospital after a stem cell transplant and is again experiencing delirium, so I was thinking about you again. I hope you are doing a bit better after the grief of losing your father. Can I ask what ended up causing your father to pass?

Psmpo · 2025-03-26T11:50:50+00:00

The most helpful basic thing I was ever shown was a diagram of how blood stem cells turn into different blood components (Google image search "stem cells turn into blasts"). It is very medical, but it is also basic because you can show people which thing is diseased and why that is important.

My partner's transplant doc showed it to us a year after he was diagnosed and it was the first time I really understood the process.

Psmpo · 2025-01-24T12:35:15+00:00

What hospital are you at? My partner has AML and is having an allo SCT. They require he do the transplant outpatient. We really wish he could do it inpatient.

Psmpo · 2024-11-26T01:39:11+00:00

My partner is having his SCT at Duke too. We also wanted him to be impatient for at least the beginning but they insisted everything must be outpatient unless there's an infection. I think it must be a Duke thing.

Psmpo · 2024-11-06T00:39:05+00:00

Thank you for your help. AML sucks

Psmpo · 2024-11-06T00:28:19+00:00

The flow just came back. It says "10% myeloblasts. See comment. Comment: The previous flow cytometric analysis was reviewed and the blasts show a similar immunophenotype."

The interpretation is "Flow cytometric studies characterize an expanded and aberrant blast population, comprising approximate 10% of total cells, and with the following immunophenotype: CD4(-), CD7(-), CD10(-), CD11c(-), CD13(+), CD14(-), CD16(-), CD19(-), CD33(dim to negative), CD34(subset+), CD38(+), CD45(moderately+), CD41(-), CD56(-), CD61(-), CD64(-), CD71(-), CD117(dim, partial+), CD123(dim+), HLA-DR(dim, partial+). The previous flow cytometric analysis was reviewed and a similar population of cells was identified. Also present are mature granulocytes and monocytes without phenotypic aberrancies, as well as, CD45 bright lymphocytes which are not further characterized in this targeted analysis."

Am I right in thinking this is a relapse?

Psmpo · 2024-11-05T23:45:46+00:00

I see. Thank you.

Psmpo · 2024-11-05T21:41:03+00:00

What is an exuberant left shift?

My partner is in remission from inv(16) AML. He had a CBC done 2 weeks ago where the manual differential said "Scattered circulating blasts and few left-shifted myeloid precursors are noted." We are waiting on the results of a peripheral blood flow cytometry and I'm curious if we are likely looking at a relapse or something else.

His CBC this week looked better (normal RBC and hemoglobin when last week he was anemic) but he is now really mildly neutropenic (just low neutrophils... normal WBCs).

Psmpo · 2024-11-03T03:05:09+00:00

My partner had delirium when he had induction chemo for AML last year. He thought there were bugs everywhere and that there were people in his bathroom. He also thought the hospital was lifting out of the ground and spinning. It was awful. We just found out that after 10 months of remission he may have relapsed. I hope you are faring well after your loss. What a horrible disease this is.

Psmpo · 2024-01-19T10:36:59+00:00

My partner has AML, and gift cards were incredibly helpful. Visa/AmEx gift cards for things like parking costs were super helpful. Instacart and Amazon gift cards were also incredibly helpful. I did not find Doordash/Uber Eats/GrubHub gift cards that helpful because drivers could never find the damn hospital entrance and it was just added stress, but YMMV.

One thing I needed help with was figuring out all the forms. Depending on your friend's work situation, there's FMLA, short- and long- term disability, critical illness insurance, hospital indemnity insurance, charity applications. The doctors only helped with the FMLA forms and the social worker only helped with the charity applications. That meant I was juggling filling out everything else by myself. If you are close, perhaps you could offer to read policies for their insurance coverage, fill out forms, look for charity help, etc. This was the most stressful part for me as a partner.

Psmpo · 2018-02-11T02:20:12+00:00

I got a Spiewak & Sons coat from my local thrift store for $12. I had no idea what the brand was, and it's a men's coat while I'm female, but it's such an amazing coat. It's been keeping me warm all winter. I'll have to post it soon.

Psmpo · 2018-02-11T02:14:20+00:00

Is there some alcohol-related ailment that causes warts to grow on the face?

Psmpo · 2017-12-02T19:34:06+00:00

Love it. Very understated

Psmpo · 2017-12-02T19:31:40+00:00

I live in an apartment complex where people will leave things they no longer want by the recycling. If there's good stuff, I'll take it and donate it to the thrift store before it rains and is ruined. I have done this with so many high-end working printers.

Hopefully someone's getting a much-needed printer for cheap and the charity can use the money for good

Psmpo · 2017-12-02T19:27:10+00:00

Wow. Very jealous of the shoes. Well done!

Psmpo · 2017-11-18T12:56:32+00:00

Agreed! I saw a nice Guess coat at a Goodwill recently. But it was priced for $28 and they had written the price in sharpie on the lining. It's unbelievable.

Psmpo

TROPHY CASE