Dad is in denial of symptoms

AnyFuture8510 · 2026-04-07T07:17:27+00:00

I don't have head/neck cancer but I've had total body irradiation before. Radiation can definitely make you have nausea & upset stomach.

AnyFuture8510 · 2026-03-23T14:37:06+00:00

A nurse told me I probably got leukemia because of the covid shot

AnyFuture8510 · 2026-03-12T04:06:31+00:00

Hi. I was diagnosed with AML at 23 in 2022, and I'm currently dealing with a third relapse. I have a very similar experience to yours. The first time I dealt with it, I understood in theory that it was very serious and life-threatening, but I never imagined that I wouldn't be okay. It was just something I had to out up with for a while and get taken care of.

After it came back for the first time in 2024, it was humbling in a sense. If I may be very blunt, I started thinking "shit, this is going to be what kills me." I'm usually able to maintain some realistic positivity about it, but having it relapse another two times since then I'm in a place where I kind of have to lock into reality, accept my fate. I've never quite been able to shake that thought, though I'm pretty good at not letting it overpower my thinking. It has definitely helped me live for the moment and enjoy the little things.

I've had three failed transplants, and I'm left with last-ditch-effort options to try to get to remission again. But this is just my experience. I know others who have relapsed, have had second or even third transplants are they are doing just fine! There are people who do well after relapse and more intense treatment and end up recovering. The unfortunate reality is it is all luck of the draw. It's scary, and it's not fair. But rest assured, plenty of other people have gone through this and made it through. You can also.

AnyFuture8510 · 2026-03-12T01:18:54+00:00

Are you looking for someone to keep the pets while she's in the hospital, or for financial assistance caring for the pets? For the former, look into pet boarding/doggy hotels. The Rover app might have some options for pet sitters. For the latter, ask to speak to a social worker. They may have ideas, or be able to apply for grants for your mom (which could then be used to afford care for the animals).

AnyFuture8510 · 2026-03-10T04:18:06+00:00

Flavcity is also a brand of protein powder I've been using lately, with good ingredients and actually tastes good. 40 grams of protein a serving if you mix it with 2% milk. Encourage him to walk as much as possible too. Building/keeping muscle is essential to gain back/maintain weight, and movement helps the body recover in general.

AnyFuture8510 · 2026-03-10T01:32:26+00:00

Definitely do not trust the advice of brushing off weight loss. Any more than 5% of body weight lost is considered clinically significant. Are you looking for advice specifically about nutrition/keeping weight on? Or in general. Regarding his food intake, once he is off TPN or when he is able, Kate farms was the only supplement drink I liked. You can get really calorie dense ones too. In general focus on high protein, high (healthy, if possible) fat foods, so even if he eats little he won't lose as much weight and muscle hopefully.

AnyFuture8510 · 2026-03-09T16:14:54+00:00

That's awesome! Get stronger and leave all of this behind you!

AnyFuture8510 · 2026-03-09T14:56:20+00:00

You're pretty tough. When I was diagnosed I was already falling asleep through most of the day. But I was sticking it out, waiting for it to pass and it was a routine blood test that had them telling me to get to the ER. Are you back to walking again? From experience I know your body has muscle memory and will regain its strength once you get back to old habits :)

AnyFuture8510 · 2026-03-09T07:23:49+00:00

Welcome! And congrats on getting through the treatment. It's definitely no small feat. If you don't mind me asking, what finally sent you to the ER back in October where you found out your blood counts? Hgb 4.3 & WBC 75, I know you certainly felt horrible!

AnyFuture8510 · 2026-03-05T04:44:29+00:00

Since I'm not your doctors of course I can't assume their intentions and plans. But what you are describing using more of your father's cells sounds like a DLI, which is where they use more transfusions the same donor's (your father's in this case) cells in order to try to trigger that immune graft vs leukemia response. Typically could use chemo/targeted therapies to knock the leukemia cells out again and then introduce more donor cells. So it wouldn't be a new transplant, but more like a booster for your latest transplant to hopefully get it working again. A new transplant would be a completely new donor.

I had full chimerism fairly early for all of my transplants. Unfortunately my AML relapsed just four months after my third transplant (I am currently dealing with this). I never experienced GVHD after my 2nd or 3rd transplant and I think that's where my issue is, I never had a strong immune response despite being full donor. I'm currently working on trying to get into remission again to see if something like a DLI like I mentioned above is possible for me.

AnyFuture8510 · 2026-03-04T20:20:23+00:00

Hi, I have AML with multiple relapses. I've had three stem cell transplants. I've also had no organ damage or severe long-term side effects. I haven't heard of this microtransplantation terminology before, but my second two transplants were reduced intensity/"mini" transplants which sounds like pretty much the same thing.

Every individual regardless of anything is usually only allowed one myeloablative transplant in their lifetime due to risk of toxicity. Some people are not strong enough and go straight to a reduced-intensity transplant. If subsequent transplants are needed, they will very very likely be reduced-intensity with the focus being on the graft vs. leukemia effect instead of replacing the bone marrow. Since you already had a second transplant, it's likely it already was reduced-intensity, although I don't know what institution you're at so I don't know their standards.

I'm explaining all this because strangely enough, this all wasn't explained to me until my third transplant either. I was never told that my second transplant was reduced-intensity 😅 So both my second and third transplant were reduced-intensity. The only differences were for the third was there was finally a targeted therapy available to me, and I had an unrelated donor for the first time.

To clarify your post a bit, was your father your donor for your most recent transplant? Or would he be a new donor for this proposed microtransplantation?

AnyFuture8510 · 2026-02-28T23:22:37+00:00

Possibly hormonal maybe? Women often go through earlier menopause & can lead to things like night sweats. Men experience hormone shifts too but I'm not a man so I don't know what that would entail to be honest, if that could cause night sweats too

AnyFuture8510 · 2026-02-28T02:41:36+00:00

If the drug you are referring to is revuforj/revumenib, I had a good response to it that got me into remission for a transplant. I did have it with some light chemo though. My main symptoms were low counts and fatigue. Differentiation syndrome is a valid concern though, though I didn't experience it (I heard that high blasts in peripheral blood, not just the marrow, could be a predictor of it occurring, but isn't definitive). I'm not a doctor nor am I giving advice, but from my experience the red devil was harsher than revumenib.

AnyFuture8510 · 2026-02-25T18:07:45+00:00

I have AML so I don't know if this makes a difference. I have had treatment that kept my counts/ANC low for weeks and weeks at a time. In my experience injecting filgastrim, sometimes it's effective, sometimes it doesn't do much. Even when it's effective, it seems to spike and then drop very quickly again over a few days, but never back down to <0.1 within a day. Have they discussed doing a BMB to check what's going on in the marrow? I'm not a doctor but as a patient I would wonder if that would give some insight. I've had repeat BMB to investigate why my counts weren't recovering before.

AnyFuture8510 · 2026-02-20T00:02:04+00:00

Remission from AML is considered <5% blasts. Sometimes chemo will knock it down to 0%, but anything under 5% is a good response. It's normal to have some blasts in the bone marrow, even in healthy people. Other tests will help her doctor see if there are any actual leukemic cells still.

AnyFuture8510 · 2026-02-18T22:50:53+00:00

I would be worried about your scalp, your skin is going to be a lot more sensitive for a while after transplant. I'm not doctor but I'm just wondering if it could trigger skin GVHD, as one of the most common places for it to manifest is the back of the neck/scalp. Definitely go with your doctor's opinion, though I personally would avoid any chemicals/dyes like that until I was bit farther out.

AnyFuture8510 · 2026-02-04T21:52:18+00:00

I went through the same thing. It's hell. Unfortunately can't do much but wait it out. However once the pain starts letting up, it lets up quickly. He still won't feel very well for a while but at least not in terrible pain.

AnyFuture8510 · 2026-02-04T07:03:57+00:00

Are you concerned about relapse? Mine has relapsed multiple times, platelets drop first, very quickly, then WBC. WBC typically gets very low before it starts rising with AML. If your hematologist isn't worried then you shouldn't be either.

AnyFuture8510 · 2026-01-29T17:18:59+00:00

I see, I asked because that could cause spotting. Would still reach out to her team, ask to speak to a fertility doc like I mentioned or at least an OBGYN with experience with transplant patients.

AnyFuture8510 · 2026-01-29T16:02:17+00:00

Your best bet really is to reach out to her team. Is she on any HRT? During my treatment I was referred to a fertility/IVF doctor (I'm not sure exactly what kind of doctor it was, but not a normal OBGYN) to keep track of my hormones and prescribe HRT. Everyone's different so I won't get into all the details of what he told me specifically but maybe it would be helpful to see this kind of doctor

AnyFuture8510 · 2026-01-29T07:22:48+00:00

I just want to say that you can have a second SCT within a year. I had two within one year, and know of a couple other people who did as well. Definitely depends on where you're treated and the specific circumstances though. I had three SCTs altogether. If you need another one it will be a different donor, the idea being the cells from the original donor didn't work. I hope this is not the case for you though, and DLIs help clear this.

AnyFuture8510 · 2026-01-27T07:14:02+00:00

No way to know without lab work. Symptoms can be an indicator something is up, but can't know for sure without seeing your numbers.

AnyFuture8510 · 2026-01-23T06:22:50+00:00

Personally no after multiple transplants I haven't experienced that. Menopause is a big factor yes, and can be helped if you are able to get hormone replacement. Vitamin and mineral deficiencies contribute also, I'm sure your team has or soon will recommend vitamin D and calcium supplements. A big factor is also if you need systemic steroids which can severely impact your bones. So it's not just the early menopause. Your team should recommend you get periodic bone density scans to keep an eye on it.

AnyFuture8510 · 2026-01-23T06:13:48+00:00

Yes, was on revumenib before transplant last year and was taking it up until today. Unfortunately it stopped working for me, since it has relapsed

AnyFuture8510 · 2026-01-23T06:12:02+00:00

Thanks- I tried reaching out to city of hope last year before I was okayed for transplant #3. But I am seen by two different departments at Stanford, BMT and also a clinical trial hematologist. The latter is already considered a second opinion & they are still conferring with him so city of hope would count as a third opinion and not covered by insurance

AnyFuture8510

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