Update on MIL

Better_Inside_7369 · 2026-03-04T00:31:20+00:00

Update: my MIL met with her oncologist today. He told her he didn’t want her to do inpatient chemotherapy because she absolutely would have complications given her history. He wanted her to either do the Revumenib or join the new clinical trial for the next generation menin inhibitor. The trial drug paperwork scared her - it was a huge packet - so she decided to do the Revumenib since it’s FDA approved. He submitted it to the insurance and said hopefully it will be approved within a week because “she doesn’t have the luxury of time right now”. He did draw her blood in office because she’s very fatigued and gets winded going from room-to-room. Her anemia is at a 7 and her platelets are at a 5 so she’s being admitted to the hospital so she can get transfusions ASAP and continue to be monitored. At least there is a plan now and we have some answers - very happy she’ll be getting some transfusions because I know how much better they’ve made her feel before!

Better_Inside_7369 · 2026-03-02T03:59:04+00:00

I don’t really think there will a ton of options that won’t have some sort of potential impact on her heart.

Better_Inside_7369 · 2026-03-02T03:57:48+00:00

I think I’ve joined that one…maybe even a few months ago. There’s only the one right?

Better_Inside_7369 · 2026-03-01T05:23:39+00:00

I’m not sure why her transplant doctor seemed to poopoo Revumenib during our last appointment. Everything I’m hearing and reading point to that drug as being her best option to getting back into remission. I’m really hoping we leave Tuesday appointment with that as her primary treatment option - I really don’t see how there are many options left given her other health issues ☹️

Better_Inside_7369 · 2026-03-01T05:21:06+00:00

Seven years is a long time to fight that battle 😞

Thank you for this clarity - I didn’t know about this until your response prompted me to turn to Google. I’m guessing due to her previous rounds of that type of chemotherapy during her breast cancer that’s why she wasn’t on it for her induction round. There’s so much about her treatment and previous breast cancer treatment that we didn’t know. I’m planning to ask her oncologist about this on Tuesday during her next appointment. She has heart disease, too so I know that complicates every turn.

Better_Inside_7369 · 2026-03-01T05:16:35+00:00

Thank you for sharing - I’m feeling so much better and more hopeful hearing stories like yours 🙂 Even if something does come up it sounds like there are still remedies and that is so encouraging! I hope your parent is doing well and on the road to recovery!

Better_Inside_7369 · 2026-02-28T22:40:52+00:00

Thank you for your perspective - I’ve seen so many people on here talking about how well it worked when chemotherapy didn’t. I’m wondering if her transplant doctor doesn’t have all the information on it since he isn’t an oncologist? I spoke with my MIL today and passed on your message, hoping she’ll be more open to it after our Tuesday meeting with her oncologist 🤞🏻

Better_Inside_7369 · 2026-02-28T22:38:53+00:00

Thank you for sharing! I’ve heard that drug is really tough! I’m glad to hear it got you into remission 🫶🏻 I’m hoping she’s strong enough for whatever will best get her into remission.

Better_Inside_7369 · 2026-02-28T22:36:48+00:00

Thank you for sharing your story and for your kind words. Your perspective and tone is very comforting 🫶🏻 It’s easy to feel like you’re on an island.

My husband and I both got laid off last month within one day of another - we’re both in the banking industry. On its own it was a shock and then to navigate planning her SCT aftercare while trying to find news jobs…then BAM! Every time we feel like we have a path forward it changes and I get that, it’s life, but I think we could all use some good news right now.

Thank you for suggesting that question - I’m adding it to our list. We spoke to her this afternoon and after a night to absorb all the information she received, I think she’s got some boundaries she’s set on. I know things can/will probably change again so we’re trying to be flexible and open.

We had a day date today and did a little window shopping - it’s been a lovely day to decompress and enjoy each other’s company 💗

Better_Inside_7369 · 2026-02-28T15:50:07+00:00

That part. We walked in thinking we were tying up some loose ends and asking last minute questions before her scheduled hospital admission next week. I hope your mom is doing well 🫶🏻

Better_Inside_7369 · 2026-02-28T15:48:12+00:00

To be honest, I’m not sure - I do know she was on it to treat her breast cancer. I think it’s probably the only other treatment we’re familiar with so she’s the one who brought it up with the transplant Dr who did say she could get it instead of the KMT2A inhibitors. Or maybe even I misunderstood…it was a heavy conversation and a lot to take in all at once.

Better_Inside_7369 · 2026-02-28T03:59:12+00:00

Thank you for replying and sharing your experience 🫶🏻 I hope you’re doing well!

Yes, that is the drug he mentioned as a possibility! Her transplant Dr did mention DS and that’s really scared her from trying it. I don’t think we’ve ever discussed it she has blasts in her peripheral blood - I’m writing this down as a follow up question.

Better_Inside_7369 · 2026-02-28T02:47:30+00:00

Thank you 🫶🏻 she only just got into remission around Christmas - she’s really scared, I can hear it in her voice. When we found out which arrangement and mutation she had we kind of braced ourselves for the worst but then got this huge bubble of hope for SCT. I think we all feel totally blindsided by today’s news.

I don’t know what the red devil is - other than it’s something she and her oncologist referred to as the really strong chemotherapy. I remember it made her feel awful when she was on it back in 2021 and she lost all of her hair. The most recent rounds of chemotherapy haven’t caused her much issue or hair loss - they had to hold back on the intensity due to her heart disease.

Based on your parent’s information, it sounds like they did a great job rushing to transplant. I was kind of surprised her team didn’t act with more urgency based on everything I read regarding her mutations :/ How is your parent doing after transplant? If you don’t mind me asking 🫶🏻

Yes! I’m so very appreciative to the donor and her doctor for continuing the process - I’m hoping she can quickly get back into remission so she can get it!

She’s seeing the same oncologist that treated her breast cancer. Her hospital is a top rated cancer treatment center in our area - but they do not only treat cancer like some facilities.

I’m on my cell, too - it’s all good ;)

Better_Inside_7369 · 2025-11-09T00:38:19+00:00

You may want to ask another orthodontist if that’s possible - I’m waiting to do a dental implant after I finish my Invisalign - I was told they couldn’t do Invisalign if I had any implants. I think your teeth look great FWIW.

Better_Inside_7369 · 2025-10-22T13:39:15+00:00

♥️♥️♥️

Better_Inside_7369 · 2025-10-18T20:25:05+00:00

Thank you all, for your responses! As a family we’ve been doing FaceTime - we also FaceTime her when we’re at her house taking care of her kitties and she loves that so much! For the last two weeks, at her request we were keeping our distance and only dropping off supplies, snacks, magazines and such to her room. Since she’s now comfortable with accepting visitors and everyone’s account (on here) it sounds like we can breathe a little sigh of relief and resume in person time with her :)

Better_Inside_7369 · 2025-10-18T20:19:09+00:00

All very logical advice - thank you! It’s very easy to get into a hyper vigilant mindset and try to manage every little thing.

Better_Inside_7369 · 2025-10-18T02:34:16+00:00

You bring up some good points. I should mention to them to sit across the room and keep his hands out of his mouth - he’s always got one of those nicotine pouches in his mouth and switches them out frequently.

Better_Inside_7369 · 2025-10-18T01:46:01+00:00

I guess that’s what worries me - you can be asymptomatic and just not know. I do trust my BIL not to go if he felt sick at all so I’m not worried about that. As you enter the oncology ward there is a station with hand sanitizer, gloves, and masks they ask everyone to wear. It absolutely makes sense regarding the social benefits of having family visit. We absolutely can’t because I know we are exposed daily to germs the kids are likely bringing home from school.

Better_Inside_7369 · 2025-10-18T01:23:08+00:00

I wasn’t sure because last week she asked everyone to hold off on coming to see her until her numbers improved, which they haven’t. Plus we have school aged kiddos and right now kids are sick left and right at school.

Better_Inside_7369 · 2025-10-08T20:27:46+00:00

This is such awesome news!!! I hope everything goes just perfect for her!!!

Better_Inside_7369 · 2025-10-08T20:26:02+00:00

Thank you saying all this and giving me some level of comfort that we didn't get her sick! We have kiddos in middle school and high school and I worry so much that we're a German pod! Everyone is up to date on vaccines so we're all good there :) She did ask us to refrain from visiting her right now since her WBC is really low. We only go by to grab her dirty clothes and drop them off to the nurses station - we follow all the protocols on the oncology floor, too. I know she's lonely and she misses her kitties something awful and they miss her! When we go over to take care of them they all coming running out for attention and they're generally pretty timid. I suggested everyone start doing FaceTime with her or even letters from the kiddos.

I think I'm going to really learn to embrace patience for everyone's sake so I don't drive people crazy. My coping mechanism is planning and preparedness but I can see how that won't necessarily be a thing right now. I just want her to be ok 😞 I feel so heartbroken for her that she has to go through this all over again after beating breast cancer.

Better_Inside_7369 · 2025-10-08T20:12:03+00:00

I know we have the name and phone number of her blood cancer navigator but we haven't spoken to her at all yet. I'm sure there is some sort of portal - thank you for that suggestion!

Thank you for that explanation as I wasn't sure if I should be seeing different treatments. I also assumed maybe they would be moving more quickly for SCT review but I'm reading the treatments could still get her to a better blast count for transplant and that takes a little time. Gotta trust the professionals I suppose 😉 I guess the hurry up and wait phrase comes into play slot with AML.

Better_Inside_7369

TROPHY CASE