Re: METHOTREXATE (MTX) TRIAL - UPDATE...

[socrates_8]

Post by MPN-MATE Admin » Fri Nov 08, 2019 2:29 am

For all of you interested in my MTX progress...

mpn-mate.com/forum/viewtopi...

Best wishes

Steve

[piggie50]

Very interesting Steve, I’m glad it’s working for you.

I re started Hydroxy last Wednesday and my platelets reduced from 931 to 836. I obviously need the Hydroxy. 😊

Best wishes

Judy

[socrates_8 in reply to piggie50]

Hey Judy...

Well I am glad that HU works for you... it certainly did not in my own experience...

Fascinating really how well the MTX is working for me at the present.

My doctor is quite elated with the facts of what seems to be transpiring with my treatments. Close continued monitoring is still required for the moment, but hopefully we may have discovered a new combination therapy for MF? (& especially so for those of us with VWS).

I will keep you posted Judy and of course I hope your platelets will continue their descent also...

Best wishes

Steve

[Bluetop]

Steady as she goes!

[Wyebird]

Thank you that’s lovely to know another drug is out there.

[socrates_8 in reply to Wyebird]

Hey Bluetop...

Yes, hopefully that is what might prove most valuable for some MPNers...

Steve

[Rachelthepotter]

Hi Steve

I hope the bushfires around Sydney aren’t making life difficult for you re cycling etc.

Can you tell me why your haematologist was willing to prescribe methotrexate for you.? And the dose? I’m back on 15 mg rux twice a day plus EPO for the anaemia and rivaroxaban to prevent clotting and strokes. And the rest. I got a very frosty response from my original haematologist when I mentioned methotrexate to het last year - only mouse models, not for MF etc.

But as the rux is giving me really horrible skin cancers ( waiting for path results on latest lesion taken out of my cheek) I need to check out things that might let me reduce the dose of rux.

I’ve moved more or less permanently to Oxford now and have a different haematologist there who is more patient centred, and also more open to suggestions.

If you have a summary of meds you’ve been on and what they did, I’d be delighted to see it.

Regards

Rachelthepotter

[socrates_8 in reply to Rachelthepotter]

Hey Rachel...

Firstly, yes... fortunately for me in Sydney's metro we are not presently really threatened by the raging fire-season still dominating Australian news... Another 50 homes perished up in northern NSW. The closer fires in Sydney's Upper North-shore's green-belt, are presently well contained or out! (deliberately lit too?)

Climate Change, is causing greater warming and exacerbating Australia's drought. However, you will not hear much on the news as to why the water is no longer in our river systems, (Water Rights sold to Multi-National Corporations (MNCs) their Mining & Agricultural industries & Pension Funds).

Thanks for asking Rachel, we are all good in that department for now...

There is a great deal of smoke about, more some days than others, dust storms, and that can impact on my cycling training too... (lack of 02), but I am not complaining of course...

My diagnosis Rachel, is Post ET/MF, CALR+ Type2, ASXL1+ & Von Willebrands Syndrome (VWS) Type1.

Prior to my efforts to improve my overall health through diet & exercise, my BMB result was Grade2 level of scarring to the bone marrow. However, a year or so later, and that was reduced to Grade1... I believe that the slight yet significant improvement was due in no small part to my change of diet and exercise regime... My doctor, believes that perhaps the Ruxolitinib might have played a larger role than I am crediting it... (?)

I commenced on 20mg b/d Ruxolitinib with daily enteric-coated aspirin (low-dose 100mg). However, periodically I was still having some nose bleeds & some blood I believe arising via the Portal Vein varices near the stomach opening, because in the past, overnight, blood would make its way into my nasal passages and I would wake needing to clear them etc.

CALR+ Type 2, often has a higher incidence of very high platelet counts, and has always been so in my experience. I have also had two (2) Transient Ischemic Attacks (TIAs). So suggesting, (as much literature does that CALR mutations have a lower incidence of thrombotic events), in my case is misleading and inaccurate.

However, being VWS Type1 possibly means, (again according to my research literature), that I should not have continually been taking aspirin. The VWS simply means that my blood lacks enough of the protein needed to help my blood coagulate...

Nevertheless, my blood platelets continued to escalate and went from high 600s to 900s-1M over the past c. year.

Through my research, I found an article of Human Trial Case Studies, where two (2) of them were considered as successful. So not 'mouse-models' per se...

In any event, that article was Posted on MATES too:

mpn-mate.com/forum/viewtopi...

Prior to my commencing MTX (Methotrexate), I was growing very concerned about possible having yet another TIA because my Platelets were hovering around the 1M, and I was having some vision impairment, 'White-noise' in my ears (I no longer know what silence sounds like), and some minor nose-bleeding etc...

My Ruxolitinib has alternated up & down between 20-25mg b/d with minimal results, and I am still on 25mg b/d

I definitely did not want to return to HU, as in my own case I know it caused me mouth ulcers that are very stubborn to heal. Interferon Alpha, also had a pronounced effect on my moods etc.

MTX, once per week. 10mg, and every other day 5mg of FOLIC Acid. My Folic Acid is now doubled to 10mg daily x6 days a week, and my Platelets have dropped again to 803. They have not been this low in well over a year...

The Folic Acid is helping my anaemia, well that is the theory at present. However, I am still feeling quite weak of late and lacking more energy (stamina) Post MTX.

My last Bloods were looking good:

Hgb - 122; Hct - 0.36; RBC - 3.95 (WBC low but normal range). Platelets - 803

Next Bloods late next week:

I will update you again Rachel as to my progress...

Hope this helps Rachel. I suggest that you download & Print the article that I have Posted, as that was what worked for me to sway help my Haematologist too...

As fas as I am aware at the present moment... I am the only MF case on Ruxolitinib (25mg b/d); 10mg x 1 per week of MTX; 10mg x6 per week FOLIC Acid); enteric-coated aspirin 2-3 x per week...

I do also take a Curcumin 1-2 per week, and 2-3 x pw Mega Bs...

Hope this helps Rachel...

Let me know how you go with your Haematologist? Sorry to hear that you are having skin cancer issues too...

There is another guy here who has a history of x 50 skin cancers due to HU, however, as yet he and his doctor cannot see the logic in HU cessation. Another MPN friend (KatieB on MATES), has also ceased HU and her leg ulcer is finally healing... Both Katie & the other gent have beeb on HU for very long periods of time...

Naturally, at the present, I am happy with the way things are progressing for me... However, it is still early days too... Hopefully, things will continue to improve my Platelet and Blood counts overall...

Finally, we are all a tad different too, as you know, and what might work for one might not for another... I was beginning to feel a tad desperate prior to MTX intervention.

Hopefully, it might help you too Rachel...

Best wishes

Steve