A Few Months Ago I Was Diagnosed With MDL

[Tucker08087]

I was given an alarmingly low chance of survival, so a part of me hoped they misdiagnosed. So yesterday I went to the Cherry Hill Cancer In NJ but related to U Penn Medicine in the city.I have goods news: Possibly a longer period of survival. There are medicines to consider, which I was told don’t exist and it appears that I qualify for a bone transplant!

[cilla4progress]

1. MDL?

Good luck, friend!

[blm]

3. ((Tucker))

[alfredo]

4. Bad news mixed with Good news.

Let’s hope the good news prevails.

[Tucker08087]

5. MDS/MDL (which may be the incorrect abbreviation)

Myelodysplastic syndrome (myelodysplasia)

Myelodysplastic syndromes (MDS) are a type of rare blood cancer where you don't have enough healthy blood cells.

It's also known as myelodysplasia.

There are many different types of MDS. Some types can stay mild for years and others are more serious.

MDS can affect people of any age, but is most common in adults over the age of 70.

What happens in MDS?

Normally, the spongy tissue found inside bones (bone marrow) produces:

red blood cells to carry oxygen around your body
white blood cells to help fight infection
platelets to help your blood clot
But in MDS, your bone marrow doesn't make enough of these healthy blood cells. Instead, it makes abnormal cells that aren't fully developed (immature).

As the condition progress, your bone marrow gets gradually taken over by the immature blood cells, which don't work properly.

They squeeze out the healthy ones, making the number of cells that manage to get into the bloodstream lower and lower.

The condition can develop slowly (indolent) or quickly (aggressive), and in some people it can develop into a type of leukaemia called acute myeloid leukaemia (AML).

Copied and pasted. I’m not nearly close to 70. I have a son who recently turned 18. He’s currently attending the University of Pittsburgh. My husband, his father, passed about 5 years ago, so the 3 years I have been given is not enough. I need him to finish school, find a job and a place to live, and then I, too, will be at peace with the end of my journey. A bone marrow transplant will help me, and I am quite hopeful! 💕

[moonscape]

6. I would seek out a specialist in MDS, one

who sees exclusively (or nearly exclusively) MDS patients. That sort of clinical experience, marrying art and science, gives us the best chance for as long a life as possible. Those statistics were impressed on me at the beginning of my own journey. Perhaps that’s what you have?

The great thing about the increased number of video medical appts is that 2nd opinions, reaching out, has never been easier. Some patients with my blood cancer (myeloma) have 2 specialists on board, not just one. I have one at a teaching hosp who directs care with my local hematologist, and when it’s time to change therapy, I’ll get input from another specialist as well.

I don’t know who the best ones for MDS are, but did a quick look and Moffitt seems to be in the top tier. They have excellent myeloma specialists as well so that didn’t surprise me.

[Ms. Toad]

7. I think that's what my mother-in-law died from. n/t