u/razorsharpblade

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.

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

So I relapsed with a sct but in my recent bmb with giltartinib after 2 rounds came back as no evidence present in the blood or bone marrow so remission but I’ve been in hospital for 14 weeks for many infections due to no immunity so now the doctors have decided to get rid of giltartinib entirely to let the bone marrow heal and hope for any blood recovery especially white cells and neutrophils.

My blood has not recovered on its own since the relapse and being put on giltartinib so they think it’s doing to much work and even at the lowest dose it would let the bone marrow heal itself

Basically the title when I exit my small grid ship I am no where near the cockpit and usually near the back of the ship

Just need to clarify answers because I got another Hickman yesterday and my crp went from 110 to 130 and I’m pretty sure a surgical procedure like that can cause crp to increase as inflammation will obviously form

So the doctors allow me not to have peripheral blood cultures due to trauma but I have had to recently as they took the Hickman line out and now they have grew a bug, not sure on what it is yet

And on the day it was taken out I have had an ache in my back where only releasing gas will help and a discomfort in my stomach area (bottom left, doctors know) so I’m wondering if the bug was on the line and now that it’s gone could it of been shuck off and moved area. I have a PET booked but it’s on Tuesday, and I’ve been going for a wee like no one ever and it’s clear as anything

Also something that surprised me, my blood hasn’t recovered on its own since getting back in remission and I was given blood and platelets before Hickman removal because that’s needed. I don’t remember what they got it up to but my bloods yesterday came back as inconclusive because they thought it couldn’t be right as it came back 130, I had another peripheral and it came back 72 which is in the same range so could my bloods be recovering on there own?

Tho I did wake up and almost faint this morning but I did have a 39 fever, 125 bpm and low ish bp but my doctor is still questioning weather it’s something else which is good

Update on cell composure

The doctor meant to say chimerism which is 20% and should be 40% post relapse and now remission so that’s where it was confused

He said it could be in the inflammation in my spleen and hopes it will be released

As there is no cancer visible in the marrow or blood

So what does that mean for me, planned dli, 19 years old

The doctor meant to say chimerism which is 20% and should be 40% post relapse and now remission so that’s where it was confused

He said it could be in the inflammation in my spleen and hopes it will be released

As there is no cancer visible in the marrow or blood

So what does that mean for me, planned dli, 19 years old

Cell composure?

Doctor said today that full results are back from bmb and it is in remission

But he also said that the “cell composure was 20%, it should normally be 40% and there is no cancer in my blood so where is the other 20%”

He suggested that the spleen was a little inflamed and said we will start you on the smallest dose of steroids to see if the infection goes and also to see if the blood production increases

But my question is what is cell composition and why is the missing 20% confusing and a problem?

Doctor said today that full results are back from bmb and it is in remission

But he also said that the “cell composure was 20%, it should normally be 40% and there is no cancer in my blood so where is the other 20%”

He suggested that the spleen was a little inflamed and said we will start you on the smallest dose of steroids to see if the infection goes and also to see if the blood production increases

But my question is what is cell composition and why is the missing 20% confusing and a problem?

So my Crp came down to 76 from 86

And my blood actually went up from 75 to 77

And in one bag from a platelet transfusion my platelets went from 17 to 38 which they usually stick arround the 20 mark

My neutrophils and white blood are still 0 but everything looks good

so my infection markers are coming down 88 from 104 and the doctor said “I can’t lie we are very very very worried. We can’t find the source so we will do a ct scan and then just take your line out and hope”

He then ends it with “again we are very worried you’ve been here for weeks and we’ve not seen improvement” even when I said the infection markers where going down and my blood are kinda improving.

He also said “taking you’r line out is a guess we don’t know if it’ll work” they have grown no bugs from any culture how would they if get to it might be in the line

I can’t have cannulas due to mass trauma and they said a minimum of 48 hours before they could put another line in, and with piclines I get clots easily due to protein s deficiency and that Hickman lines are the only ones that are really safe

He said worryingly and we’re really worried 5 to 10 times

Seems like my body runs on spite