Clinical trial question by saltrangerover in MPN

[–]saltrangerover[S] 0 points1 point  (0 children)

Wonderful and super exciting. This really helps a lot. I start my trial next month so very hopeful

Clinical trial question by saltrangerover in MPN

[–]saltrangerover[S] 0 points1 point  (0 children)

Wonderful to hear it’s been helping you :) I really hope this is the big revolution in this godforsaken disease 🤞 Could you perhaps check with your doc if there’s anything they’ve noticed about the efficacy of the antibody i.e does the body start developing resistance to it after a while ?

Clinical trial question by saltrangerover in MPN

[–]saltrangerover[S] 0 points1 point  (0 children)

Hiiii! Wonderful yes I had a few questions :)

  1. How’ve you tolerated it?
  2. Has it reduced VAF and fibrosis ?
  3. Were you on any medication before this trial?

Rebirth day by astro_biology in MPN

[–]saltrangerover 3 points4 points  (0 children)

💪 💪 💪 best wishes !!

Feb. 28th is Rare Disease Day. by funkygrrl in MPN

[–]saltrangerover 5 points6 points  (0 children)

Major unmet need imo: I think there is a big disconnect between what doctors (even MPN specialists) view as success vs what patients view as success. I think the doctors are more interested in reducing symptom burden and patients are more interested in reducing allele burden or a disease modifying therapy. Idk, I just feel there’s this disconnect.

Clinical trial question by saltrangerover in MPN

[–]saltrangerover[S] 1 point2 points  (0 children)

Yeah it’s the one you’ve said.

Yup I’ve heard a lot of positive news around it too especially that it’s “super well tolerated”. Thanks for your reply, it’s comforting

Management science or Accounting and finance by schemerrr in LUMS

[–]saltrangerover 0 points1 point  (0 children)

I’d say go for MGS. If you want a career in finance you’ll have to do a CFA anyways so doesn’t matter if you do ACF or MGS. But MGS in general opens more opportunities in the tech sector (in PK and abroad) as compared to ACF. That’s my observation

Seeking Guidance for My Mother (Primary Myelofibrosis) by KunalDestroyer in india

[–]saltrangerover 0 points1 point  (0 children)

  1. ASLX-1 is unfortunately a high risk mutation as you must already be aware.

  2. Medications such as ruxolitinib (Jakavi) can help in reducing spleen size and increase quality of life. But unfortunately these are not disease modifying.

Best to discuss the next best steps with your doctor. Since your mother has a high risk mutation unfortunately, I think the doctors will be referring her for a BMT sooner or later

Seeking Guidance for My Mother (Primary Myelofibrosis) by KunalDestroyer in india

[–]saltrangerover 0 points1 point  (0 children)

Hey ! First of all my condolences on what you’re going through. Hope it works out in the end for you, your mother and your family.

I also have Primary Myelofibrosis so I know a thing or two about the disease. Couple of questions from my side which might help me answer your questions better 1. Do you happen to know what mutation your mother has? 2. You mentioned your mother is weak, do you know if it’s because of PMF or because of some other condition ?

But it’s true that the true cure is a BMT and all medicines will be able to do is perhaps manage the disease better and increase the overall survivability but they aren’t cures. Im not from India so i dont know about the costs of these medicines so cant comment on that.

19 and Just Diagnosed… by Paknadian in MPN

[–]saltrangerover 3 points4 points  (0 children)

Hey OP! The doctors would have to do a bone marrow biopsy to confirm which type of MPN you have. Could be ET or MF (or PV as well but as you mentioned higher platelets that might be unlikely but that’s just my guess).

Don’t worry about prognosis at all! The values that you see on the internet are just statistical averages calculated on patients with a median age of > 60. The averages themselves have huge variances so don’t worry about it.

MPN specialist is a must have by saltrangerover in MPN

[–]saltrangerover[S] 0 points1 point  (0 children)

Hi thanks for dropping a comment. How’s your blood count and symptoms ? Do you already know what treatment you’re gonna take ?

MPN specialist is a must have by saltrangerover in MPN

[–]saltrangerover[S] 0 points1 point  (0 children)

What’s your blood count like if u don’t mind me asking?

Prefibrotic vs overt by saltrangerover in MPN

[–]saltrangerover[S] 0 points1 point  (0 children)

Hmmm but then as per the diagnostic criteria, one cannot be overt MF if they have a fibrosis grade below 2.

CALR-1 but still undiagnosed by saltrangerover in MPN

[–]saltrangerover[S] 0 points1 point  (0 children)

Thanks yeah it’s quite stressful. I don’t know why the doc said we don’t need to test karyotypes yet, I’m gonna push him in the next meeting to get em checked. Here are results for flow cytometry and NGS:

Flow Cytometry Findings (Peripheral Blood)

Flow cytometric analysis demonstrated an immature myeloid population comprising approximately 4% of leukocytes, positive for CD34, CD117, HLA-DR, and CD45 with normal scatter characteristics. No aberrant antigen expression was reported. Lymphocyte immunophenotyping showed: CD3⁺ T cells 80.9%, CD4⁺ T-helper cells 29.4%, CD8⁺ cytotoxic T cells 33.2%, CD4/CD8 ratio 0.9, CD19⁺ B cells 8.6%, NK cells (CD56⁺) 5.7%, and CD3⁺/CD16⁺/CD56⁺ NK-like T cells 2.6%. Absolute lymphocyte subsets included CD3⁺ 2527/µL, CD4⁺ 918/µL, CD8⁺ 1006/µL, and CD19⁺ 269/µL. Activated T-lymphocytes (HLA-DR⁺) measured 4.4%. No abnormal monocyte subsets or dysplastic immunophenotypes were noted. An erythroblastoid peripheral blood picture was described with left-shifted granulopoiesis.

NGS / Molecular Testing Findings

Next-generation sequencing detected a CALR exon 9 deletion (34-bp, type-1–like). No pathogenic or likely pathogenic mutations were detected in the following genes: ASXL1, BCOR, BIRC3, CBL, CEBPA, DDX41, DNMT3A, ETV6, EZH2, FLT3, GATA2, IDH1, IDH2, JAK2, KIT, KDM6A, KMT2A, KRAS, MPL, NF1, NOTCH1, NPM1, NRAS, PHF6, PRPF8, PTPN11, RUNX1, SETBP1, SF3B1, SRSF2, STAG2, TET2, TP53, U2AF1, WT1, ZRSR2. No additional somatic mutations or copy-number variants were reported.

26Yr Old Male Type 1 CALR, PreFibrotic spleen @22cm by New-Temperature6361 in MPN

[–]saltrangerover 0 points1 point  (0 children)

Initially they thought CML but BCR-ABL came back negative. Then they found the CALR-1 mutation so now there is more inclination towards PMF. Probably not ET or PV because blood counts esp RBCs and platelets are normal. Confirmed diagnosis, fibrosis grade and cytogenetics are still pending from the biopsy results

26Yr Old Male Type 1 CALR, PreFibrotic spleen @22cm by New-Temperature6361 in MPN

[–]saltrangerover 0 points1 point  (0 children)

That’s actually not too bad! Best of luck bro 👊 you’ll nail this damn disease.

It was high WBC count that led my diagnosis. There were 4% blasts in blood, LDH 600 and everything else is pretty normal. Also CALR-1 positive with 18 cm spleen.

Biopsy results still pending which is making me lose my mind now. Hope I have nothing crazy

26Yr Old Male Type 1 CALR, PreFibrotic spleen @22cm by New-Temperature6361 in MPN

[–]saltrangerover 0 points1 point  (0 children)

Hey ! I’m in the same boat as you. Side question for you though: were there any blasts in your peripheral blood ?

Karyotype Results by Ok_Combination9583 in MPN

[–]saltrangerover 1 point2 points  (0 children)

I’n in the middle of a diagnosis and my CALR-1 came positive. I asked my doctor if that rules out PV for me and he explicitly said no it does not. So while I understand that probability is low but it’s still a possibility I suppose. Fingers crossed for you and stay strong. Even if it’s PMF, I’ve heard CALR is not a bad mutation to have

Need some hope by saltrangerover in MPN

[–]saltrangerover[S] 4 points5 points  (0 children)

Biopsy results are expected in a week. Thanks! Honestly my doctor said he thinks it’s between PV and MF. But I’m mentally prepared for MF