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  #1  
Old Wed Dec 16, 2020, 08:53 PM
shadowii shadowii is offline
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Suggestions on what this could be

Hi guys,

Been nearly two years since translpant and my dads counts never really came back to normal but had been low stable.

But this last month his counts dropped sharply
whites 2.3-1.2
reds 11 to 8.3
platlets 85- 55

please note that he did have a cold/fever two days before the test

he's going back in next week as opposed to next month (he had been monthly since august when he recovered from pneumonia )

Be straight with me could this be something else because my mind cant help running towards the relapse word
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  #2  
Old Wed Dec 16, 2020, 09:10 PM
Neil Cuadra Neil Cuadra is offline
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It's reasonable to be concerned, but I would definitely wait for next week's test results before concluding that there's been a change in your dad's health status.

Sometimes the results from a single CBC can't be trusted, so you need the next test to show if his counts have really dropped or they are actually still in the normal-low state.

And of course his minor illness could have made the test results misleadling.
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  #3  
Old Mon Dec 21, 2020, 05:54 PM
shadowii shadowii is offline
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Welp results are in and its something of a mixed bag

the numbers are pretty much identical but the monocytes are coming up which indicate it may be viral related

However one thing is chimerism has decreased and he's now 87% me and 13% him so that might be something.

But there are no abnormalities in his blood work (thank goodness) and he seems physically well (man is walking 5-7 miles a day)

So basically were going to wait two weeks and see how it goes from there.
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  #4  
Old Wed Dec 23, 2020, 10:54 AM
Neil Cuadra Neil Cuadra is offline
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It can be maddening each time you have to wait for the next report, but overall I think your news is positive. The low counts are worrisome, but at least they were stable over the week. Perhaps they have reached their low point, since they didn't drop further, with nowhere to go but up. Fingers crossed.
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  #5  
Old Mon Jan 4, 2021, 05:44 PM
shadowii shadowii is offline
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counts are pretty much the same, actually they all went up a tenth of a point (so its good they are not decreasing)

but since they are the same they are going to do a biopsy next week.

He is still walking six miles a day.
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  #6  
Old Sat Jan 9, 2021, 12:28 AM
shadowii shadowii is offline
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He just had the biopsy but unfortunately his counts were down again

hemo 8.4-7.7
wbc 1.2-.8
platlets no change

gotta ask neil what does this sound like to you?

Last edited by shadowii : Mon Jan 11, 2021 at 06:41 PM.
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  #7  
Old Mon Jan 11, 2021, 07:26 PM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by shadowii View Post
He just had the biopsy but unfortunately his counts were down again

hemo 8.4-7.7
wbc 1.2-.8
platlets no change

gotta ask neil what does this sound like to you?
I don't know what to conclude. I'm just a layperson who is puzzled like you.

What did the doctor say about the counts, and about the biopsy results?
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  #8  
Old Tue Jan 12, 2021, 01:42 AM
shadowii shadowii is offline
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Originally Posted by Neil Cuadra View Post
I don't know what to conclude. I'm just a layperson who is puzzled like you.

What did the doctor say about the counts, and about the biopsy results?
results will come back in one to three weeks, its just seems weird to me that the blood smear would show no abnormalities and this be happening but I guess the bone marrow test will be the deciding factor.
He does have kidney problems I wonder if that is causing it.
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  #9  
Old Thu Jan 28, 2021, 05:26 PM
shadowii shadowii is offline
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welp it seems dad has mds again

but they stress that it wasnt the same as the one before as its got different chromosomal abnormalities that weren't in his original diagnosis

monosomy7 and 3p
we are looking at different options next week

I have seen people on this forum who relapsed and then recovered and got it into remission or survived second transplant (looking at DanL among various other people such as meri T friends) I guess we have to hope dad will be one of them

2 reason to be hopeful
one is that this version seems concentrated on two said genes and may make it easier to target
and this was not detectable in the blood or the bone marrow only the gene test, so its not out of control yet

Last edited by shadowii : Fri Jan 29, 2021 at 07:34 PM.
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  #10  
Old Sat Jan 30, 2021, 02:43 PM
Neil Cuadra Neil Cuadra is offline
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I'm shocked and disappointed to learn about your dad's relapse.

Monosomy 7 is common with MDS, and is usually an unwelcome sign. But for that reason, researchers have put effort into studying it.

Outcomes are generally better when there are only 1 or 2 genetic mutations, compared with what they call a "complex karyotype" with many mutations, but it also depends on the specific combination. The statistics that help doctors determine a prognosis apply to overall groups of patients, but not necessarily to any one patient.

Please let us know what the doctors recommend now.
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  #11  
Old Sat Jan 30, 2021, 03:04 PM
shadowii shadowii is offline
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Quote:
Originally Posted by Neil Cuadra View Post
I'm shocked and disappointed to learn about your dad's relapse.

Monosomy 7 is common with MDS, and is usually an unwelcome sign. But for that reason, researchers have put effort into studying it.

Outcomes are generally better when there are only 1 or 2 genetic mutations, compared with what they call a "complex karyotype" with many mutations, but it also depends on the specific combination. The statistics that help doctors determine a prognosis apply to overall groups of patients, but not necessarily to any one patient.

Please let us know what the doctors recommend now.
How do you think we feel?
I'm trying to stay positive (my aunt who is a doctor was the one is gave me those two reasons to be a hopeful) and know that there are salvage therapies and possibility of second transplant (have seen success stories on this forum), but the odds seems so much worse than first time. (plus dad really doesn't want to do a second transplant and I'm a little afraid of what he will wont let happen)

and now that ive read about monosomy seven i feel worse

Last edited by shadowii : Sat Jan 30, 2021 at 04:14 PM.
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  #12  
Old Sun Jan 31, 2021, 06:50 PM
Neil Cuadra Neil Cuadra is offline
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shadowii,

I suggest that you attend this MDS Foundation webinar:
Clinical Implications of Genetic Mutations in Myelodysplastic Syndromes

April 17, 2021, 12:00pm ET

Dr. Rami Komrokji of the Moffitt Cancer Center will provide an overview of recent advances in the genetic understanding of MDS, with a particular focus on the emerging role for mutational data in clinical management as a potential tool to assist in diagnosis, risk stratification, and therapeutic decision-making.
Registration link
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  #13  
Old Sun Jan 31, 2021, 06:59 PM
shadowii shadowii is offline
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Quote:
Originally Posted by Neil Cuadra View Post
shadowii,

I suggest that you attend this MDS Foundation webinar:
Clinical Implications of Genetic Mutations in Myelodysplastic Syndromes

April 17, 2021, 12:00pm ET

Dr. Rami Komrokji of the Moffitt Cancer Center will provide an overview of recent advances in the genetic understanding of MDS, with a particular focus on the emerging role for mutational data in clinical management as a potential tool to assist in diagnosis, risk stratification, and therapeutic decision-making.
Registration link
Thanks neil, I've seen reasons to be hopeful and reasons not to be and I knew that going in it was only 50/50 whether it would work (with the other percent relapse or death from complications to surgery)

but for most of 2020 it looked like we were in the clear (which isnt really true his counts never did return to normal and he got pneumonia in July but most of the months felt good)

and with worsening statistics at this point i'm just not sure if being hopeful is reasonable at this point

I cant bear the thought of loosing him
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  #14  
Old Mon Feb 1, 2021, 10:41 AM
Meri T. Meri T. is offline
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Hello Shadowii,
I just wanted to say there are ups and downs in this disease, especially MDS. I'm very glad your father has you, a wonderful caregiver.
Do try the webinar, I've learned a lot through them too. And great to know you have an Aunt doctor! The doctors definitely helped me.
Take care of yourself. Your father is in my prayers.
Meri
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Female born 1965, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in 2017.
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  #15  
Old Mon Feb 1, 2021, 01:52 PM
shadowii shadowii is offline
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Quote:
Originally Posted by Meri T. View Post
Hello Shadowii,
I just wanted to say there are ups and downs in this disease, especially MDS. I'm very glad your father has you, a wonderful caregiver.
Do try the webinar, I've learned a lot through them too. And great to know you have an Aunt doctor! The doctors definitely helped me.
Take care of yourself. Your father is in my prayers.
Meri
His primary caregiver is my mother, but the sentiment is hugely appreciated.
How are those two friends of yours that ended up relapsing and getting a second transplant.

Last edited by shadowii : Mon Feb 1, 2021 at 02:17 PM.
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  #16  
Old Tue Feb 16, 2021, 12:19 PM
shadowii shadowii is offline
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welp looks like we are going with Vidaza

But as usual Dad's body is being weird even the doctors admit he never has normal reactions to the any of these treatments.

They not even sure that this is technically a relapse; the symptoms are different they think the graft might be failing two years out or that he got a completely different mds in reaction to treatment.

they hope the vidaza could put him back in remission and improve the chimerism for a few years
I have seen examples of that working for years like DanL and Ballie (yes I am aware of Ballie's eventual passing but I would take four years to four months)

but they are only giving it a 30-40% chance of success and we have had such bad luck already (which maybe I shouldn't say since people have died from transplants right after or within a rough few months and we are nearly two years out but its just hard to feel lucky right now)

he is very frustrated and I just dont know what I can do for him
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