MDS/MPN ?

[Cja1956]

Hello, all, these last few weeks have been a whirlwind of a new hematologist appointment followed by lab work, a bone marrow biopsy, and an ultrasound. My next appointment with my doctor is Monday to give me my diagnosis. 😬However, the hospital she is at has a chart which posts all your results and health information. I just read that after my bmb, she wrote mds/mpn. I was reading about it and now I’m really a wreck. Has anyone else had this diagnosis? What should I ask her? Has anyone had treatment for this? Any information would be greatly appreciated.

[socrates_8]

Hey Cja...

Please do try not alarm yourself too much...

Usually, results can cover the gamut of all possibilities, and it does not necessarily mean that you have any of them...

It is simply a Protocol often used in analysis of results, so please try to stay calm at least until you learn of your actual results...

Best wishes

Steve

(Sydney)

[Cja1956 in reply to socrates_8]

Thanks, Steve. You’re always so supportive.

[socrates_8 in reply to Cja1956]

All good...

Stay chilled girl and try not to create too many demons... It is so easy to allow ourselves to become overly anxious, and you know what Cja...?

It does us absolutely no good at all to do so...

Steve

[Timjonze]

Hi there. I do remember one of my first pathologist reports saying “MDS cannot be ruled out” and it freaked me out and I spent ages on google researching it. But no doctor has ever mentioned it to me since so it may hopefully mean just that - they don’t suspect it but can’t definitively say not. However you will need to confirm next time you see a doctor. Good luck!

[Cja1956 in reply to Timjonze]

Thanks, Tim. I will keep that in mind.

[crapaud]

I was diagnosed MDS-U +MF in 2014.

After a period of stabilisation On Pegasys I had a SCT in 2015. Going fine now.

Don't forget we're all different so each of us require different treatments.

I had no red/white/platelets with a strong risk of a rapid progression to something worse which is why I was rapidly orientated to the SCT.

Best of luck

Gary

[Cja1956 in reply to crapaud]

Thanks, Gary. When I had my appointment with my doctor for my diagnosis, she said it wasn’t MDs but i had pre-fibrotic pmf. I’m continuing with my HU and jakafi and she already arranged a sct consultation for next month. In the meantime, she added an EPO injection every 2 weeks for now to raise my red blood cells. She did say she thinks I won’t need one until the next 2-5 years.

What questions should I ask during my consultation? Who was your donor? And was the preparation difficult?

I’m really glad you’re doing well. It gives me hope.

Take care,

Cindy

[crapaud in reply to Cja1956]

For the consultation try to be accompanied by someone - description of the SCT protocol and risks are quite emotive moments and it's useful to have a second pair of ears to not miss things. My major questions were based around 'what makes you feel that a SCT is essential'. I also sought (and got) a second opinion that confirmed what my specialist had said.

My doner was an American (initially a German who had to pull out at the very last minute), so non related.

The preparation wasn't really that difficult, even an anticlimax really.

The tougher side of things is after:recovering force/energy, fighting GvHD, having a restricted diet, taking a wheelbarrow full of medication... but when you pull through those things become a distant memory.

The hardest thing for me was just before my SCT, I had to be taken off Pegasys to be able to start the procedure and my situation became rather critical, but I pulled through.

One last word of personal thought - you have to believe in what you are doing, it's a fight.

Best of luck

Gary

[Cja1956 in reply to crapaud]

One more thing, I just read what you wrote to my boyfriend and he wanted to know 2 things. If you don’t mind my asking, how old are you. And how long did it take to take until you felt better?

Thanks again for your previous thoughtful response.

Cindy

[crapaud in reply to Cja1956]

I was 53 when I had my SCT.

'How long did it take to feel better?' is a difficult question to answer.

I progressively improved in strength throughout the first 10 months, things took a dip with the onset of my liver GvHD after 12 months which needed a further 9 months to get over.

I no longer require medication (and have been off medication for 2 yrs) , my bloodcounts are all perfect.

For sure I have aches and pains - perhaps due to long periods of corticoids - but also perhaps to the fact I'm not getting any younger!

Regards

Gary

[Cja1956 in reply to crapaud]

Oh, my! You went through quite an ordeal. It sounds like your strength, bravery, and good doctors pulled you through. It’s good to hear that you’re doing so much better now and that you have your life back. Thank you so much for your telling me your story. I wish you continued good health always.

Cindy

[crapaud in reply to Cja1956]

Thanks for your good wishes - don't hesitate if you have further questions where I may be able to help.

Gary

[Cja1956 in reply to crapaud]

Thanks

[Cja1956]

Hi, Gary,

Thanks so much for for your reply. It was really helpful to hear from someone who has been through it. It just seems so drastic and scary to me. You definitely gave me food for thought.

Stay well and I hope we can keep in touch.

Best wishes,

Cindy