r/leukemia

Hello can anyone explain this report for me please?

My brother was diagnosed with T-cell lymphoma/lukemia the other day and my parents are freaking out. He has a huge mass in the mediastinal area which is pressing on his SVC along with fluids in his chest. He is 19yo male.

His right side heart collapsed so they put him on VA-ECMO and a ventilator, and was put on induced coma till he gets stable. And later on they gave him a low dose of chemo which was vincristine and 12 hrs later they gave him another dose of daunorubicin.

His kidneys rn are not functioning perfectly so they are waiting to see they might put him on CRT dialysis machine to support his kidneys.

This all happened so fast two weeks ago he was fine!

This is the pet scan report.

CLINICAL INDICATION

Newly diagnosed lymphoma, staging assessment.

PROCEDURE

Whole body 18F-FDG PET/CT scan was performed as per standard protocol, from vertex down to mid-thigh level.

The standardized uptake values (SUV) are the maximal corrected for body weight.

COMPARISON

No prior similar imaging available for comparison.

FINDINGS

Reference mediastinal blood pool activity SUVmax 2.7.

Reference liver background activity SUVmax 4.2.

FDG avid mediastinal lymphadenopathy is noted. Sites of involvement include the anterior mediastinum, subcarinal, paraoesophageal and the right cardiophrenic regions.

For example:

- Conglomerate anterior mediastinal nodal mass associated with moderate pericardial effusion: 15.6 x 9.8 cm, SUVmax 17.4.

Small volume right submandibular lymph nodes are noted with mild FDG uptake which are more likely to be reactive in nature.

No significant FDG-avid lymphadenopathy below diaphragm.

There are multifocal FDG-avid right pleural deposits. For example, a right middle lobe anterior deposit measures approximately 0.8 cm in thickness, SUVmax 7.6.

Additionally, there is focal FDG-avid nodule noted at the right seventh intercostal space superficial to the liver which could be pleural or intramuscular in nature, SUVmax 6.5.

Small volume bilateral pleural fluid is noted.

Diffuse fatty infiltration of the liver is seen with no focal FDG avid lesions.

Multifocal FDG-avid cutaneous thickening is noted at the right proximal medial thigh which are more likely to be inflammatory in nature, for clinical correlation, SUVmax 19.1.

Elsewhere, there is physiologic FDG distribution with no focal FDG-avid lesions in the brain, pancreas, spleen, adrenals or the visualized skeleton.

IMPRESSION

1. FDG avid mediastinal lymphadenopathy with bulky anterior mediastinal disease as described associated with moderate pericardial effusion.

2. Multifocal FDG-avid right pleural deposits.

3. Right seventh intercostal space focal FDG uptake which could be pleural or musculature in nature.

4. No suspicious FDG-avid disease otherwise.

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#QC/EA

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?

Same as the title

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.

hello all! i (25f) am almost two weeks in of taking 100mg dasatinib daily after being diagnosed with cml mid last month and experiencing some not so great side effects. i experience both muscle and bone pain most severe in my legs, and i stay mobile, (walking, stretching, etc.) but it seems to honestly make the pain worse even without overdoing it. i know the first bit of a tki is expected to be rough, but i went to my towns yearly fall festival this past week and kept having to exclude myself to take a break or sit on the ground to rest my legs from how intense the pain gets. there are nights when all i can do is try to massage my legs, prop them up, use my heating pad, and cry, but i don’t want to find myself in that situation in public where theres simply nothing else i can do. just curious if anyone uses any sort of mobility aids when there are rough days but shit still needs to get done

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

(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.

My fiancé just got diagnosed with AML 2 days ago. We were told that we'll know exactly what kind today or tomorrow. We were supposed to get married on the 16th (our 3 year anniversary) but now we're doing it in the hospital. I just feel alone and have no one who can relate. Obviously I can talk to his family but I just want to know if there is anyone who had to move their wedding because of a diagnosis. I'm so scared to watch him go through this. I'm nervous that when he loses his hair and becomes weak from chemo that it'll be hard to look at him without crying every time. I would love some advice in general about how to help him mentally and physically as well as just finding people who can relate.

Hi everyone, I’m new here. My husband (34M, otherwise healthy) was diagnosed with T-ALL 2.5 weeks ago and has started UKALL reg B. I (40F) am 23 weeks pregnant and we have a 2 year old daughter. We live 2 hours from family and have quite a limited support system. I’m due to have a C section at the end of Jan and, as a natural planner, I’m really struggling with the unpredictably of our situation over the next few months. Looking for advice or experiences of anyone who has been in similar situations particularly those with experience of adults undergoing the UKALL-reg B and what to expect over the next 6 month, or those who have had babies whilst partner is in the first few months of treatment, particularly if there are any UK based organisations who might be in a position to offer support specifically around this situation. Thanks very much.

What’s your thoughts on flying once treatment for ALL has completely finished and bloods have gone back to normal? I’ve heard it’s still not advisable because of the pressure and lack of oxygen and it having a negative impact on the bloods? I’m keen to take my family away but I wouldn’t want to risk it. What’s your experience and what advice were you given

Reaching out in search of ideas of what to send a beloved relative going through treatment right now. For those of you who have been through or are in the this process what are some things that you have received our bought for yourself that have been helpful or just nice to have? we have already done flowers books cards etc but really just want to know what was actually nice to have or use so we can show our support in a way that makes sense. We live far away and hate that we can’t be there. Thnx