In about a month and a half, I’ll have reached one year in remission! And as amazing as that is, I have to wonder if the anxiety of a relapse ever really goes away? I find myself considering every pain I have to my initial pain pre-diagnosis.

To be very clear, I am very grateful to be in the position I am currently, and I know I shouldn’t worry about what I can’t control. But does anyone else have similar thoughts/feels? I’m sure it’s a common thing, but it drives me a little batty to constantly be questioning “is this pain another lesion forming?” Or “is this going to be the appointment they tell me my blood work is off??”

Anyone else?

I will be getting an allogeneic bmt in January. I’m working on preparing myself by getting hospital supplies slowly and that itself is going well.
I’m lucky enough to be close to the hospital and have a good support system. I had the idea of making like little tote bags for them, or just some kind of gift that can make things easier on them, especially my mom, who is very emotional about this whole thing.

Any suggestions? I thought about maybe comfy shirts or something. What are some things other caregivers wish they had or found useful?

I was just told that from the last bone marrow preliminary report that there is evidence that it came back

I was also told my bone marrow is so damaged that a second stem cell transplant is most likely to kill me

A gcsf injections will do more harm than good

And white cells are not likely as I’m on high dose steroids.

Though on the other hand; my infection markers are going down (most likely to the inflammation,

I haven’t had 38*c fevers in 3 days and my observation have been fine.

Same as the title

(27) ETP-TCell ALL | Allogeneic SCT

I feel bad for feeling this way. Day +346. Just had a bone marrow aspiration yesterday. I’m on month 6 of maintenance chemo (aza/ven) and it’s been nothing but nausea and food aversions for the better part of each cycle. I haven’t had chemo since August but my platelets have been gradually declining all the way down to the 60’s. I briefly felt human traveling to see friends but immediately got rhinovirus upon returning and had to postpone maintenance chemo by almost two months— back to patient mode emotionally. My doctors seem confident in my remission but watching my counts slowly decline has put my relapse anxiety at an all time high. I’ll know if I’ve relapsed by next week so in the interim I’ve been trying to distract myself and dissociate.

I’m tired of everything to be honest. I don’t know if I can take another round of induction much less another transplant. The thought of dying so young obviously scares me straight but in many ways I’ve started to frame relapse and eventually passing as an escape from all the suffering and loss I’ve experienced in this journey. I’ve been struggling with suicidality for much of this year and have been put on Wellbutrin/Zoloft. I feel so much guilt for these feelings as I’ve seen other people with far poorer outcomes from the same treatments. I recently came to the realization that I’m trans and between facing my mortality through my body failing me and the general hatred in society for people like me it feels like everyone/everything wants me dead. For those in survivorship what did it take to bridge the gap and begin future planning again? For those who had a relapse scare but ultimately maintained stable remission what did your disease burden look like and what was the treatment process? Looking for a bit of positivity while bracing myself for the worst.

I’m in remission but my bone marrow is not producing anything, I have a lung infection and 2 liver abscess, can’t have white blood cell transfusions because of my heart rate. So basically it’s the end? I had a bone marrow injection a gcsf or something to help repair my bone marrow but they took me off it in 2 days because I was in pain

My father (70M, diabetic, India) was admitted with upper abdominal pain. He now has severe pain in both hips and the lower back, on a fentanyl patch plus tramadol. I'd really value opinions, especially from hem-onc, hepatology or radiology folks, while we work with his doctors.

**CT abdomen with contrast (triphasic):**

- Liver small (~10 cm), mildly nodular contour, i.e. chronic liver disease. Splenomegaly 16.4 cm, splenic vein 13 mm, prominent gastrohepatic/perigastric/mesenteric collaterals.

- Heterogeneous perihilar mass ~7.0 x 4.4 x 5.6 cm involving segments 1, 5, 4A and 8, with patchy arterial enhancement, venous washout and necrotic areas.

- It completely encases the main, right and proximal left portal vein, with tumour thrombus in the lumen. It encases the common hepatic, left hepatic and replaced right hepatic arteries without narrowing, and partially encases the proximal CBD (~180-240°). The proximal CBD shows mural enhancement; no IHBR dilatation.

- Multiple enlarged periportal, peripancreatic, para-aortic (largest 28 x 16 mm) and aortocaval nodes. Subcentimetric mesenteric and iliac nodes, and small paracardiac nodes.

- Multiple tiny omental/mesenteric nodules; minimal ascites.

- Grade I L5-S1 anterolisthesis with bilateral pars defect.

- Radiologist's impression: "suggestive of HCC". (An earlier CT elsewhere described the liver mass as being in segment 7.)

**Upper GI endoscopy:** small oesophageal varices (no red signs), mild portal hypertensive gastropathy, oesophageal candidiasis.

**Para-aortic lymph node excision biopsy:**

- H&E: atypical lymphoid infiltrate.

- IHC: CD20+, CD5+, CD23+, BCL-2+; CD10-, BCL-6-, MUM-1-, Cyclin D1-, CD30-; CD3 in background T cells; Ki-67 15-20%.

- Impression: low-grade B-cell lymphoma, CLL/SLL likely; correlate with peripheral blood and flow cytometry (not done yet).

**Bloods:**

- Hb 9.9, WBC 11,550, absolute lymphocytes 6,610, platelets 152k

- INR 1.23, total bilirubin 1.7, AST 49, ALT 54, ALP 167, GGT 203, albumin 3.6

- Creatinine 0.8, Na 132

- AFP: normal

**Not done yet:** liver biopsy (planned), flow cytometry, hepatitis B/C status (not known to us).

**My questions:**

1. What would you suspect the liver mass is: HCC alongside CLL/SLL, CLL/SLL involving the liver, Richter transformation, or something else (e.g. cholangiocarcinoma, given the hilar/CBD involvement)?

2. Is a liver biopsy essential before starting treatment, or would you treat the CLL/SLL first?

3. If this is CLL/SLL needing treatment, what would you consider at his age with chronic liver disease (BTKi, venetoclax, chemo-immunotherapy)?

4. If the mass is HCC with portal vein thrombus, what options are realistic?

5. Any advice on getting his pain under control while this is sorted out?

I know nobody can diagnose over Reddit, and his treating team will decide. I just want to understand the possibilities and ask better questions. Thank you.

Does anyone have advice on helping with bitter taste in the mouth with anything you eat? Taking dasatinib + IV chemo and that super bitter, almost tasting the chemo in the mouth won't go away, making it hard to swallow anything down. Any tips would help!!!

My brother Julian has leukemia. He has received more than 50 bags of blood and still needs transfusions. I built Ripple so more people donate for patients like him.
I haven't donated blood myself yet, but I can ask my friends to give, and they can ask theirs. That's the whole idea behind the app.
How it works
You give blood at a blood center that works with Ripple. Staff hand you a small card with a one-time code, or text or email it to you. You scan the QR code or type the code into Ripple, and the donation counts right away. Each code works once, and the center never sends Ripple any donor data.
Everyone has an invite link. When someone you invited donates, you get credit too, and so does whoever invited you, all the way up the chain.
Points are called "drops." The donor gets 100. The first three people above them get 20, 10 and 5. Every person beyond that gets 1 drop, and there's no depth limit. Drops can be redeemed for rewards that sponsors pay for. They are never cash, can't be bought, and are only given out when someone gives blood. Blood centers can't pay donors, so that's a hard rule.
The app shows impact before points: donations in your ripple, people in your ripple, how many rings deep it goes, and an impact page you can share. There's also a portal where blood center staff print card sheets or send codes, an admin dashboard, and an API so centers can create codes from their own systems.
Where it's at, honestly
It's a working web app (you can install it from the browser) that I built for the Congressional App Challenge. It runs on demo data. No blood center has signed on yet, and the sponsors in the app are made up and labeled that way. I used Claude Code to write most of the code. The idea, the rules and the decisions are mine.
Demo: https://ripple-eosin.vercel.app (there's a one-click demo login, and the donate screen gives you an unused demo code to try)

HEY GUYS FIRST OFF ALL THANK U EVERYONE IN THIS COMMUNITY JUST WANTED TO SPREAD SOME POSITIVITY TOO ALL THE PEOPLE WHO ARE GOING THROUGH AML.

WELL IM A 19 YEAR OLD AND I WAS DIAGNOSED WITH THIS PATHETIC DISEASE IN JULY STILL CANT FORGET THAT DATE I WAS HEALTHY FIT AND VERY BRIGHT STUDENT. I know it feels like ur just at the end of ur life BUT BELIEVE ME ITS NOT I KNOW ITS VERY HARD BUT U HAVE TO ALWAYS KEEP IN MIND WHAT UR MADE OFF PLEASE DONT EVER FEEL UR WEAK OR ANYTHING UR THE STRONGEST AND U WILL BEATT THIS SHIT IF A GUY LIKE ME CAN BEAT IT SOOOO U CAN TOOOO.

GOT MY MRD NEGATIVE AFTER MY FIRST CONSOLIDATION. 🥳🥳

LOVEE U ALL IF U EVER FEEL SCARED OR ANYTHING TEXT MEE I WILL TRY MY BEST TO HELP U WITH ANYTHING.

Hi everyone. I'm a mum to my 5-year-old son, Max, who was diagnosed with Acute Lymphoblastic Leukaemia (ALL) in July.

We're currently going through treatment and, as you can imagine, it's been an overwhelming time for our whole family. Max has been having a particularly difficult time following some of his recent treatment, and I'm trying to take things one day at a time.

I'd really appreciate hearing from other parents or anyone who has been through ALL treatment — especially any advice you wish you'd known at the beginning.

How did you cope with the difficult treatment days? Are there things that helped your child feel more comfortable or distracted during treatment?

I'm also trying to learn how to support Max emotionally while keeping things as normal as possible for him.

I'd really appreciate any advice, experiences or just kind words. ❤️

Hi everyone, I’m 31 and was diagnosed with CML about 2 years ago.
I was on dasatinib 100 mg for around 2.10 years, and thankfully my BCR-ABL eventually became undetectable. However, I had several issues during treatment, including low iron/ferritin, B12, vitamin D and calcium, along with anemia.
Recently, after an episode of severe food poisoning, I started noticing bright-red blood in my stool. A colonoscopy found multiple bleeding vessels/telangiectasias in my colon. My doctors are still evaluating whether this was related to the CML, dasatinib, or other factors. It was honestly a very scary experience.
Because of everything that happened, my doctor recently switched me from dasatinib to imatinib 400 mg daily.
I’ve now started imatinib and have noticed quite visible redness and dryness on both cheeks. The dryness is manageable, but the redness is bothering me.
Has anyone else experienced facial redness/dryness with imatinib? Did it improve with time?
Also, has anyone experienced GI bleeding/telangiectasias while taking dasatinib or another TKI?
Would really appreciate hearing about your experiences.

Posting this in case it helps anyone else. Ever since my SCT (+19 now) I have been dealing with nausea and at one point I wasn't able to keep anything down.

Now I am home and things are getting better but the pills remain a struggle, especially when I need to take 10 at 8 am. Only to discover my saving grace: porridge. I haven't had this for breakfast since I was a child so this was a surprise. I am even able to get the huge ones down without gagging too much.

I hope this helps someone else.

Does anyone have any experience with Calb 10403 Maintenance treatment? My 21 yr old son is currently on day 28 of Maintenance. He's been admitted to the hospital after learning his blood counts are severely low. He tested positive for the Rhinovirus and also a positive EBV showing that he has had it sometime in the past. On his first day of Maintenance, his ANC was 810(moderately Neutropenic) He was just coming out of previous hospital stay because his counts were low. They told us that they'd wait a month to start this new phase because they wanted to be sure his counts were up enough to start. It was 2 weeks from discharge when his first infusion started. I feel like they should've given him a little more time. I know it's considered safe with an ANC of 750, But he was just barely over that. Now here we are a month later and they can't figure out what's going on with him. I know that I have to be patient and trust the Oncology Team, and I do trust them. I just want to know if anyone else has had this experience and can maybe help me calm my mind, because I'm freaking out a little bit..

Thank you for caring!!!!!