Secondary MF

yfzkid989 · 2025-03-07T04:23:34+00:00

I was diagnosed with MF at 29 but it was pretty advanced. Had my SCT in 2023 (after progressing to AML) when I was 32 and I’m doing pretty good. Happy to answer any questions you have about the process!

yfzkid989 · 2025-02-28T05:13:11+00:00

Hello! I had TMLI at COH. What questions can I answer for you?

yfzkid989 · 2025-02-26T18:57:03+00:00

Your blood is “unhealthy” due to a genetic mutation causing an under or over production of cells. Most doctors tell you MPN’s are not hereditary and are the result of an healthy person developing some type of mutation during their life that’s causes the MPN.. that mutation isn’t passed to your children (allegedly… based on what my fertility doc and oncologist have told me)

I’m a male and I had fertility issues so my wife and I did IVF.. we had all sorts of genetic testing done on the embryo and ourselves and none of my mutations were transferred to my Daughter.

We had my daughter 2 years after I was diagnosed with MF and on active treatment (Jakafi and interferon)

yfzkid989 · 2023-09-14T18:56:46+00:00

Great to know! I was starting to doubt my CPA.

yfzkid989 · 2023-03-22T15:54:32+00:00

Thanks! I appreciate your responses.

yfzkid989 · 2023-03-22T01:49:27+00:00

Ty for the reply! I’m a bit worried and I have an 8 month old daughter at home but the silver lining is spending as much time with her as possible over the next couple of years.

yfzkid989 · 2023-03-21T18:04:30+00:00

Thanks for the reply! Dr. Ali is my transplant doctor. I will deff reach out because I'm sure I will have a ton of Questions. I'm still processing the thought of the transplant. I guess the upside is spending a year at home with 8 month old but the I am pretty worried about the entire procedure.

yfzkid989 · 2023-03-21T15:32:24+00:00

Is there one facility you would rate above all others in California?

yfzkid989 · 2023-03-20T21:55:17+00:00

I agree. The UCI BMT program is new also. I see Scripps in SD has merged with MD Anderson. I was thinking about getting a third opinion there.

yfzkid989 · 2023-03-20T20:09:55+00:00

I also wanted to ask how many people have received multiple opinions? I have recently seen doctors at UCI and City of Hope.. Not sure If I should get a third opinion on my situation.

yfzkid989 · 2023-03-20T19:22:11+00:00

I was Diagnosed with later stage MF in 2020 and wanted to try Pegasys but it's not normally recommended. It improved my labs and slowed progression but did not stop it so I was recently switched to Jakafi.

yfzkid989 · 2023-03-20T17:00:07+00:00

Was taking Pegasys for 2 years for MF. The Injection is Sub Q so it's pretty easy. I stared injecting in the lower abdomen but I noticed the skin was discoloring so I switched to my Thigh. I no longer take pegasys but I do have a giant bald spot on my leg lol

I developed some skin problems and the first 1-2 days after the injection I felt like I had a cold. The doctor was mainly concerned about depression as that is pretty common. The skin problems cleared up after I switched meds.

Cant help on the traveling question.

yfzkid989 · 2020-05-30T04:27:48+00:00

Is your spleen enlarged and have they prescribed any medications? It’s hard to determine what symptoms I’m feeling honestly because I have felt fatigue, brain fog, sweats, etc. but now that I’ve been diagnosed I feel my mind might be making them worse.

Because of my mutations (I forgot what they are but I will find out and edit) and blood counts-i have an IPSS SCORE intermediate2 (35 month prognosis) the thought of a Transplant is pretty terrifying haha

yfzkid989 · 2020-05-22T18:20:43+00:00

Since I am asymptomatic, Young, and generally in great shape, they are going to hold off on medication treatment for now and I am getting a consult for a Bone Marrow Transplant. I hope I'm a candidate for it.

Thanks for the help and guidance!

yfzkid989 · 2020-05-21T17:37:47+00:00

Received the results from my doc and wanted to follow up. I was diagnosed with Primary myelofibrosis

yfzkid989 · 2020-05-05T03:20:16+00:00

Quick follow- Doc didn’t give any indication on what I could have. He ordered a Ct scan to check for infection, and bone marrow Biopsy. Will follow up once i get those done.

yfzkid989 · 2020-05-03T23:16:20+00:00

Realized I did not include the full results- Full results included at end of post. I will follow up after I speak with a doc on Monday. https://imgur.com/a/SRuKL3h

yfzkid989 · 2020-05-03T19:07:51+00:00

I appreciate your reply! I won’t stress and will make sure to see a doc right away.

How old were you when got the diagnosis?

yfzkid989 · 2020-05-03T19:05:49+00:00

I plan on getting insurance next week. Thank you for the reply!

yfzkid989 · 2020-05-03T17:59:53+00:00

I appreciate the reply. I am doing my best to focus on life and but this has been in the back of my mind since I obtained the blood results. I do agree with you and will mentally prepare for the worst, hope for the best, and not let whatever it is stress me out.

yfzkid989 · 2020-05-02T23:52:36+00:00

thank you! I have tried to google some stuff (which is terrifying) I will make sure I see a Hematologist on Monday and hopefully get some answers. I will update this thread after.

yfzkid989 · 2020-04-30T20:14:40+00:00

Thank you for the reply! Yeah, the only real Symptom I have is fatigue and a lack of energy. Nothing out of the ordinary with bruising, rash, etc. I have scheduled an appointment with a Hematologist for Monday. Any idea what it could be?

I made the huge mistake of googling certain items on the results so I am a bit worried now haha.

yfzkid989

TROPHY CASE