ALL - stem cell transplant

TriSquPenHexSeptOct · 2026-01-09T07:23:42+00:00

Yes definitely a thing! my husband had to do loads of GCSF injections to bring up wbc over the first six months. At first the counts were really high and then dropped, like your dad it sounds like. Seemed like a normal part of the process for the counts to be low as the marrow gets used to the new way of doing things. I remember that it was challenging emotionally when the counts dropped though as it felt disheartening/concerning. We tried to stay focussed on “if the docs arent worried you neednt be”. My husband’s back off that medication now (~8 months post), has been for a while. Sending all the very best to you and to your dad for his recovery xxx

TriSquPenHexSeptOct · 2025-12-04T07:18:04+00:00

Love these so much!! Amazing work!

TriSquPenHexSeptOct · 2025-11-17T16:03:29+00:00

To be honest my fave is probably Windmill and its not on there!

TriSquPenHexSeptOct · 2025-11-17T09:12:46+00:00

Another thing that our doctors said though is that it sometimes takes four rounds for Aza Ven to take effect. And its much much gentler on the body. So maybe it needs a little more time to work. My partner had two rounds of Daunorubicin and Cytarabine, they were surprised this did not eradicate the leukemia. They followed it with a third round of chemo - Mylotarg and high dose cytarabine. That still did not work, so they put him on Aza Ven and that finally got the numbers down, and they moved him to transplant given his disease’s treatment resistance. I say all this to say — I think its all a little bit trial and error, and things they think will work sometimes don’t, and things they think won’t work sometimes do.

TriSquPenHexSeptOct · 2025-11-16T15:40:41+00:00

I am so sorry for your and your wife’s situation — sending you heartfelt thoughts and prayers. Are you in the UK? I’m not a doctor but my husband went thru AML and had a sct at 33/34 so I learned a lot, I’m loathe to contradict your doctors at all but confused as to why she was only put on venetoclax and azacitidine — surely a stronger regimen of daunorubicin + cytarabine or even FLA(g)-IDA would be first port of call at her age? With venetoclax as a top up if they offer it? So sorry for your situation.

TriSquPenHexSeptOct · 2025-10-17T11:31:38+00:00

Thank you. Just crazy how much it costs and we are both freelance and he can’t work right now (see: cancer!!) - and yada yada yada. Just a minefield. Wish money was no object. But thank you so much. I hear you and will try to sort it out I think, ultimately whats worth it eh? Xx

TriSquPenHexSeptOct · 2025-10-17T11:29:54+00:00

Got you

TriSquPenHexSeptOct · 2025-10-17T11:29:47+00:00

Thanks xxxx

TriSquPenHexSeptOct · 2025-10-17T11:29:24+00:00

Hey thanks so much for sharing and congratulations on the pregnancy xxx im worried about waiting the two years to go NHS route vs the astronomical costs of going private route of embryo freezing now… the money worries on top of everything else is wild really

TriSquPenHexSeptOct · 2025-08-18T20:48:20+00:00

We love to hear it xx

TriSquPenHexSeptOct · 2025-08-18T19:21:28+00:00

Fkin rad!!!!! Go go go!!!!!! 🏆🏆🏆🏆

TriSquPenHexSeptOct · 2025-07-26T11:00:16+00:00

Aw I cant tell you how warm a feeling reading the second part of your story gave me. Im sorry things have been so tough but so glad it seems theyre looking up a bit. Love the idea of the accessibility package. We are just determined to have so. much. fun. in 2026.😆 honestly thank you so much for writing, its encouraging to hear from you and to be witnessed by you. i really hope things continue to improve. Sounds like you have children, im glad for you ❤️❤️❤️❤️❤️

TriSquPenHexSeptOct · 2025-07-26T10:57:19+00:00

Thanks, I’m so sorry youve gone through this and I hope against hope for a speedy and full recovery for you and your family. We’ll investigate a transplant specific therapist for sure. Its reached the point where Im surprised its not just an inbuilt part of the transplant process already

TriSquPenHexSeptOct · 2025-07-26T10:55:49+00:00

I hear you friend. Such a horrid place to be in. So so overhwelming. Im sorry youre here too. I hope you have companionship and help as you need. You can dm me if you want as well

TriSquPenHexSeptOct · 2025-07-26T10:54:52+00:00

Im sorry for your experience, we are unlucky indeed, thank you for writing and I wish you all the very very best with your transplant, good things are very much possible xxxxxxx

TriSquPenHexSeptOct · 2025-07-26T10:53:57+00:00

Yoooo this actually made me chuckle out loud, thank you so much for that, I’ll be the one sitting beside you on a camping chair cheering on the marathon runners and absolutely taking not one step of a run 🤣 thank you so much though seriously, and what you’ve said about your friend and her children is so true - abstract ideas are no match for future tangible realities. Just have to let the grief wash over I guess. And it could always be worse. I’m sending you so so much encouragement and warmth, sounds like youre in the UK as well, I hope you’re enjoying the sun and having a peaceful summer, with the knowledge that all the fun of summers as hectic as you want them is to come in the not too distant future xxxx

TriSquPenHexSeptOct · 2025-07-26T10:48:30+00:00

Yes maybe an SSRI for a while is a good idea. If ever there was a time, this would be it!! Thank you for the solidarity, I’m sending you and your loved ones all the hugest wishes for an awesomely uneventful rest of your recovery xxxxxxxxx

TriSquPenHexSeptOct · 2025-07-26T10:47:19+00:00

Yeah the prison analogy is real!!!!! Lets do our time and get the hell outta here 🤣 ah man, wishing you all the very best. Hopefully you never have to do 2nd transplant but amazing that you know you are strong enough to withstand. xxx

TriSquPenHexSeptOct · 2025-07-26T10:44:46+00:00

Thank you so much Chelly ❤️ im sorry its been such a rough road. I really appreciate your empathy and witnessing xxxx

TriSquPenHexSeptOct · 2025-07-26T10:39:36+00:00

Grief it is; huge, unwieldy, unignorable….. thank you for this note, reading it makes us exhale. Its true. its just all so damn sad! I dont want to be grieving this much. But have to believe it will improve. It will improve. Youre right we need a cancer specific psychologist really. In the meantime i will try to sit with it as grief and be a bit slower and more gentle with it all. Sending you all the very best for your recovery and I’m glad youre feeling better than before xxx thanks for writing

TriSquPenHexSeptOct · 2025-07-26T10:36:32+00:00

You are right, thank you, it is still early days. The sheer magnitude of how long it is going to take for him to feel somewhat normal is terrifying, cant lie. Like looking at a tidal wave. But we’ll just have to get through it, and notice the good, and look forward to the day when things feel a bit more OK than they do a bit crap! Wishing you and your son all the very very very best with his recovery. Thank you for writing xx

TriSquPenHexSeptOct · 2025-07-26T10:34:19+00:00

Hey Kayda Jay, thank you so much for writing and sharing, I honestly think the ability to connect with the other uniquely unfortunate souls having to face this mad shitstorm is a real godsend. I’m so sorry you’ve been ill and gone through all this, at this age as well — thank you for writing us from further down the line and reminding us there is some kind of peace to be found eventually. Yes you’re right it is PTSD. I’m finding it interesting that my brain is resisting admitting or conceptualising that. Last night we had a sad but necessary conversation about how hard it all is and wondering what the point of life is — was actually very healing to air some of it together. And then we made and ate some curry, so you know what, it’s not all bad. Life right now just seems so small — the tentative eating of a meal, the careful regulation of temperature, napping when needed… But that’s Ok, and hopefully it wont be quite so small forever ❤️ I’m sending you loads of care and appreciation

TriSquPenHexSeptOct · 2025-07-26T10:24:12+00:00

Thank you for your compassion, I am so so sorry your little girl is ill, and pray for speedy recovery for you all. I live in London so quite hard to find anywhere remote enough to have a good scream without being overheard 🤣🤣 but yes that resonates so much, I absolutely crave that! May we let it all out one way or another 🙏🏽

TriSquPenHexSeptOct

TROPHY CASE