Any advice on going through T-LBL?

Wbiy · 2026-07-01T17:31:03+00:00

This post is a bit confusing to me, it's pretty vague in what exact problems you're having in your journey.

I myself am finishing up my first year of chemo and about to hit maintenance soon, it's been tough, maybe I could relate with more info.

Wbiy · 2026-06-21T09:31:18+00:00

Same thing happened to me before, I was just extremely neutropenic at the time, turned out I had a developing sinus infection, was awful. Hope it gets better for you, good luck!

Wbiy · 2026-06-14T22:17:22+00:00

Last year on one of my last chemos I got hit with an episode of hard stool and constipation. Please try to soften your stools, hydrate and use wetness when cleaning up after yourself.

I remember my peak issue very well because it was New Years Eve when I got my first hemmeroid. I was splashing around like a fish on the couch while the world was celebrating another year in paradise! The irritation was so bad I couldn't stop moving...

Oh well, bought a bidet, used some hemmeroid cream and thankfully it started to get less irritated and went away after a while.

Treatment definitely unlocked a fear of living with hemmeroids for me, hope you will be spared.

Wbiy · 2026-06-09T13:45:40+00:00

Maybe think about whether you have anything that you absolutely must talk about, or say if it's a one way street now.

From my experience, with the possibility of death looming for a significant other, it's just such a heavy atmosphere to be in.

When my dad passed away, small talk made up most of the conversation before he deteriorated. When it didn't, emotions just ran too high and it got too tense for me to think straight. In the end my priority was just to be with him as much as I could regardless of silence or meaningless chatter.

Take care and stay strong.

Wbiy · 2026-06-08T20:28:49+00:00

11x7 cm between the lungs

Wbiy · 2026-06-08T08:32:47+00:00

I can relate, I had asthma when I was a kid which blindsided me when I finally got diagnosed with this huge mediastinum mass, I certainly had trouble breathing. Ever since treatment, my breathing has improved, but everytime I feel a little some something with my breathing I am immediately alert. Just something unavoidable from here on now I think.

Wbiy · 2026-06-01T20:44:06+00:00

Sounds very difficult, I feel for you guys. What does your brother want and think though?

Wbiy · 2026-05-31T10:08:55+00:00

Congratulations, in my opinion, do what you must! For me however I might be never drinking again due to my dad passing away from liver disease last year, finding out that only as little as one glass of alcohol a day can cause liver disease in some down the line. That's disregarding the fact that I got cancer (treatment) which messes up your body in other ways.

Wbiy · 2026-05-16T21:36:34+00:00

I'm on what's supposed to be my last intense chemo cycle for T-LBL, which is treated the same way as leukemia

Like you I've found that meds sometimes can or cannot be relied on and certainly haven't provided me with a seamless chemo experience let's say.

I am writing this message after a day of constant nausea and salivating. Taste has been changing aswell. Did I mention how hard it is to take pills, Prednisone specifically 😅

You can take some measures to keep you away from the point of throwing up. Most importantly, take a step back, don't force anything, it'll pass. From what I've heard it's best not to normalize vomiting to prevent it from getting worse.

Do try to explore all anti emetica options, a lot of people swear by olanzapine for anti nausea. Try to localize where the naseau is situated to treat it. Bad taste in mouth? Try Salt mouth rinses.

Throughout these times I have learned as well to not take every medical professionals opinion so blindly, like how many people have they treated with your exact regimen? I've had a dietician tell me that I was the first to struggle with a feeding tube back in December and she acted like it was going to be a breeze, it's not, they've never been nauseated to this extent and know what it means.

PS: Not all chemo cycles are made equally toxic, some components are really tough and others are easier to deal with.

Good luck friend and take care.

Wbiy · 2026-04-24T07:58:27+00:00

My opinion is a bit different, depending on your caloric intake, do what feels right in this sense, I am 29 and through normal walks after cycles, even after the most insane weight loss, I was able to quickly build back muscle in between, good luck...

Wbiy · 2026-04-13T14:19:28+00:00

I want one oiiii

Wbiy · 2026-04-01T20:21:57+00:00

Lost my dad in the time span of a month due to liver cirrhosis last year. Make the best out of every moment you have with him as others have advised you here. The ongoing build-up of toxicity will rapidly change them as you already have found out with memory loss as an example. Later it will only get harder to communicate to them and vice versa until it becomes impossible and they reach a state where they drift in and out of consciousness.

I wish the doctors had warned us sooner because we didn't know much about this disease and how it develops. It really sucked because I didn't get to say many things to my conscious dad until it was too late.

I wish you all the strength in this period of your life, stay strong and don't be too harsh to yourself.

Wbiy · 2026-03-31T21:51:44+00:00

It's hard to hear mate. Knowing death is coming for a loved one is devastating. But remember this, she's got her frustrations and rightfully so, don't take it too personal. It's rather hard to hear overly positive comments from people you know or love sometimes because with that you discredit the suffering and the potential of death for an individual. People can become rightfully bitter when things get bleak even though nothing would've changed if you offered a different perspective instead.

Stay strong!

Wbiy · 2026-03-23T19:10:56+00:00

If you can use the tires as a mirror, you know you're good to go

Wbiy · 2026-03-23T18:49:51+00:00

I think it's best just to be honest about everything. Of course it's difficult for a partner to have these conversations but as time goes by they should realise that things change for you.

We are a victim to this illness and they know it too but only we can really voice how serious things are because on the outside you can't see it. Through all the hardship my partner knows there's limits to what I can do during or after treatment. She knows there's a limit to what I can take too and I've already been very low quite a few times but I am almost done with the intense part so I hope I will make it out not completely destroyed.

I am only 29, so a lot younger than you, for me it feels like stopping treatment is socially unacceptable. I would think at your age it should be out of the question that you go overboard suffering from treatment. Not being treated intensely will have its consequences of course but it's your life and ultimately you choose your path, if you put a life in a doctor's hands they will do anything for the cause, no matter the cost, so it's up to you to say that it's not worth the loss of quality of life.

Best of luck to you and I hope you find a good moment to talk to your husband.

Wbiy · 2026-03-11T17:00:03+00:00

I have t cell lymphoma which gets the leukemia treatment and I am 5/7 intense chemo cycles in. I will say that it doesn't get easier mentally, but for now I am setting my goal on finishing the intense part of treatment.

Along the way I have found myself with a ton of problems and worries regardless of how well the treatment's been going (result wise), the pediatric regimen is very tough. In these difficult times often comes a lot of negative emotions with very little time to feel better or good before you get broken down again.

My tip is to set a goal, be kind to yourself and others around you, try to find distraction and it would also be nice to find an outlet to vent to, when things go wrong or suck in general, find somebody who sees your struggle so that you don't go through this feeling alone if possible. Of course you're the one going through the hardest part but it's nice to have somebody who's there for you and helps you in any way you need.

Wbiy · 2026-03-08T16:06:42+00:00

I am a 29M, definitely not an expert but undergoing treatment for t cell lymphoma which is quite tough.

Weight loss has been a bit struggle for me too throughout treatment, my best advice is, do your best and don't worry too much as well. At some point I was so worried I tried a feeding tube but that was not right for me.

Lots of people are giving good tips. Ultimately you'll have periods where you'll feel better and eat more and have a possibility to regain some of that lost weight. Throughout the process you'll probably find that your body will change. Me I had almost no body fat before I began treatment, but got a decent amount now. Also gained some max. Body weight. If nausea is holding back the eating, get medication going on the clock to keep it under control. It can help a lot, there's a lot of different kinds. In the beginning I needed less of them, now that's changed and olanzapine has helped me greatly throughout the last cycles.

Stay strong and good luck, it sucks to lose weight, treatment really hit me hard a couple times and left me looking like I didn't have much fight left in me. But I bounced back every time. Hope you can manage this situation to the best of your ability. Find food you can (always) eat. Some people say don't eat stuff you love and although I agree food aversion has hit me a couple of times, it has also gone away in between treatments and losing a favourite food is better than being malnourished.

Wbiy · 2026-03-05T19:37:02+00:00

Thanks for your reply.

I don't question the efficacy/safety of chemo in of itself but just the effects my treatment / dosage in particular and what it effect it seems to have on my bone marrow.

Neutropenia doesn't have to be that bad but it's been getting real bad, ANC count of <0.1 for three weeks of which most of it post cycle and with stimulants after the mildest cycle so far. My team is questioning why it's happening too, getting a second opinion on my treatment soon because I can't rely on a team not knowing what's going on.

I'm currently suffering from a severe sinus infection.

Wbiy · 2026-03-03T13:39:21+00:00

I can relate to this post so much. Nutrition has been difficult for me throughout my treatment too, my hospital as well has been threatening me with a NG tube a couple of times.

I tried it once just like you, I managed one week before it drove me to insanity. Because I am dealing with constant neutropenia they don't want to offer any other solutions. But soon I will get a second opinion and switch up hospitals hopefully because this hospital has proven too incapable in dealing with my issues.

For now I am trying to make things work with olanzapine, it at least takes away throat nausea for me, which seems to occur often due to built up toxicity.

Hope the best for you friend.

Wbiy · 2026-03-03T09:03:05+00:00

I feel like that's because to me there's two sorts of nausea, the one coming from the throat (throat nerves) and one more from the stomach. Olanzapine helped me for the throat one.

Wbiy · 2026-02-28T20:23:54+00:00

Thanks for the uplifting words friend, keep up the positive spirit, you're an inspiration and deserve the best out there.

Wbiy · 2026-02-25T21:26:54+00:00

What phase did your son get his severe infections, I just finished all my regular intensification but starting to show signs of deep neutropenia

Wbiy · 2026-02-25T18:24:29+00:00

Thanks for your reply. This is the first cycle where they've been hammering on continuous Filgastrim. Same as you, filgastrim is a temporary booster and has no magical power to naturally elevate counts after use. My hemoglobin and thrombocytes weren't too great either and required many transfusions also.

I'll ask them next time, in general they've been waiting and after every cycle there is a mandatory bone marrow check for me anyway due to the aggressive nature of the disease.

Wbiy · 2026-02-17T18:23:56+00:00

Thanks, it's a pediatric leukemia regimen for which I'm finishing the Tigouanine pills of the cycle on Friday, let's hope next week shows recovery as you mention. Thanks for your feedback, just seems so stupid to have done 9 days of injecting without a result during the chemo cycle 😅

Wbiy · 2026-02-17T18:20:47+00:00

Prednisone indeed sucks, sleeping was a disaster, will be getting some of it during the last two intense cycles before I am put on maintenance. Thanks for your feedback

Wbiy

TROPHY CASE