Anyone with triple negative MF?

[Aneliv9]

If so,what is your current treatment and future treatment plan?

[Smile61]

Hi there! I am also triple negative. No treatment until I turn 60 in two years or platelets elevate. They have jumped considerably this past visit from 500k to 700k. I see hemo this month and have been feeling worse lately so I am curious to see if bloods have risen again.

[Aneliv9 in reply to Smile61]

So.. Your first diagnosis was MF triple negative,or you progressed from other MPN? If answer is yes, you were also triple negative?

[Aneliv9 in reply to Smile61]

What does your doctor believe about future treatments for patients with triple negative MF?? Are there drugs for these patients in the pipeline of novel drugs??

[crapaud]

Hi

I was diagnosed MF +MDS-u triple negative (No whites/No reds/No platelets) in 2014. Treated with Pegasus for 10 months to 'stabilise' things and a SCT in August 2015.

After getting through GvHDs that went on for 18months I'm now doing pretty well.

Best of luck

Gary

[Aneliv9 in reply to crapaud]

Really happy you doing pretty well! What do you mean by " No whites/No reds/No platelets???" How old are you?

[crapaud in reply to Aneliv9]

I was 53 at the time of my SCT.

My MF + MDS-u meant I was producing very low levels of RBC, white blood cells, and platelets.

Consequently I was low on hemoglobin/hematocrit, I had very poor immunity which meant I caught every cold, cough or ailment hanging around.

Regards

Gary

[Aneliv9 in reply to crapaud]

And all these are behind now! Do you have signs that you had a SCT?

[crapaud in reply to Aneliv9]

Not sure I understand what you mean by 'signs I had a SCT'.

[Aneliv9 in reply to crapaud]

I mean if you have any issues after SCT,or everything is normal right now

[crapaud in reply to Aneliv9]

My SCT resolved my PMF/MDS-U side of things fully.

The drawbacks were due to GvHD (acute in first 6 months and chronic GvHD (liver) during the period 12 to 18 months after my SCT.

Acute GvHD is 'normal' and in a way necessary to enable the 'remaining original marrow/cells ' to be expelled.

I currently have itchy skin from time to time but nothing too serious.

I also have aches and pains brought on by extensive periods of corticoids before my SCT, during my SCT and after due to GvHD. However I am also 5yrs older which may also explain aches and pains due to older age.

Without any doubt my quality of life is exceptional compared to my period of illness, it is not perfect but not many people have 'perfect' health at coming on sixty!!

I consider myself very lucky and have no regrets. The 'fight' was difficult - because it is a fight - but we'll worth it.

Kind regards

Gary

[Aneliv9 in reply to crapaud]

Very inspiring story and attitude. Also very strong body!! Thank you for let us knowing this! One more question... Was your first diagnosis PMF/MDS triple negative,or did you have a chronic MPN as ET or PV?? I try to understand the origin of triple negative MF

[crapaud in reply to Aneliv9]

MDS-U + MF.

I didn't go through ET or PV.

On the plus side of my battle I didn't have to go through long periods of medication changes and progression.

From diagnosis to SCT 16 months - would have been 12 months, but my SCT had to be pushed back 4 months due to severe health issues on stopping Pegasys.

Regards

[Aneliv9 in reply to crapaud]

I have a -maybe -silly question: Triple Negative MF is some form of MDS??

[crapaud in reply to Aneliv9]

No I don't think so - but I'm not a specialist !

[Aneliv9 in reply to crapaud]

I am neither a specialist,just read that triple negative MF is more like MDS with fibrosis rather than true MF. And very difficult case for treatment

[crapaud in reply to Aneliv9]

You may be right. I remember that when I was diagnosed the specialist doctors (at my treatment hospital and the lead Paris hospital for blood disorder diseases) both agreed that the rareness of my condition warranted the SCT be undertaken rapidly.

Regards

Gary

[Aneliv9 in reply to crapaud]

I am glad you are doing so well,this gives us all hope