Myelofibrosis

Does anyone know if MF can cause a secondary cancer? We were at the specialist yesterday and initially had to see a different Doctor who didn't know the history, on looking through my Husband's notes made the comment that there was a small mass on T9 of the spine, and another new one on T7. Up until then we had not been told of these masses. When he realised that we had not been told, he backtracked and said not to worry, it was nothing. Later the specialist arrived and had some bad news in that the drugs (ruxolitinib) had basically stopped working. There does not appear to be much left for my husband other than radiation or chemo, neither of which will be pleasant.

Anyway, with that new it was forgotten about the masses. That is why I am asking the question now.

Merry Christmas to all.

Shoosh

[Paul42]

Hi

I don't know, i guess it would make sense we might be more likely to pick up other cancers as our bodys ability to fight off disease is impared.

Im sorry to hear the news ruxo has stopped working.

I have no idea if the Uk is part of the imetelstat trial, is this something you could ask about, i read that there have been some excellent results, even though they had to put it on hold for a while.

There are other jak inhibitors on trial too. Who do you see? Could you ask to see Prof Harrison in london?

Merry christmas to you and your husband too.

Paul

[Hidden in reply to Paul42]

Thanks for your response :Paul but we are in Australia, our specialist is 850 km's return trip from where we live. I will look into the imetelstat trail. Thank ou so much for yur information.

Cheri xx

[Paul42 in reply to Hidden]

Hi

Oh sorry didnt realise. I know there are other Jak inihibitors, think Paniticrib or something like that is one of them.

I have been in contact with someone in australia who had fantastic results with a vitamin c and selenium approach, he had MF.

If you wanted i could pass you on his details, im sure he would be happy to share his experiences.

Paul

[Hidden in reply to Paul42]

Thank you so much Paul, and the others who have very kindly replied to my post. Paul, I have made a note of your information and would be very grateful if you could pass on the details of the person you know in Australia.

Once again, many thanks to all and Merry Christmas

Shoosh

[Paul42 in reply to Hidden]

I have pm'd you

[Hidden in reply to Paul42]

Thank you for the information Paul. You have been very kind. I will make contact with this person ASAP.

Kind Regards

Shoosh

[Paul42 in reply to Hidden]

No problem, let us know how you get on

[almbee in reply to Paul42]

Hello Paul,

I'd also love to get the details of the person in Australia who used Vit C & Selenium for MF- It's very hard to get good information here.

Thank you in advance.

Linda

[Bhowerto in reply to Paul42]

Would you be so kind as to share the vitamin C/selenium/bi carb info for me? My father was just diagnosed with advanced MF Sept. 2021. thank you. email is [e-mail] thank you

[Aime]

Hi Shoosh, I am sorry to hear your are going through a worrying time for you both, not what you need before xmas. I am sorry I cannot answer your question but would just like you to know I am thinking about you both and hope things improve in 2015 for you. Kindest regards Aime xx

[babbittybumble]

Hello Shoosh, Not sure if you are anywhere near Melbourne but there is a Dr Richie, who is head of the Bone marrow transplant team there, who is very interested in all the MPD s. I know he is very respected there and very knowledgable on all the treatments available. Type in his name on your computer and it will bring up the hospital in Melbourne city where he works. I know that Professor Claire Harrison at Guys Hospital in London has met with him and other eminent doctors, who all have a very keen interest in helping people with MPDs. Its Christmas day there with you now take care and I hope you you get all the help possible. Bye

[Hidden in reply to babbittybumble]

Hello babbittybumble

Thank you for your reply. We are on the other side of Australia, 450 k's south of Perth, but I have made a note of Dr Richie and will look into it.

It is very much appreciated that you and all these other lovely people have taken the time and effort to reply, especially at this time of the year.

Best wishes to all

Shoosh

[Hidden]

Thinking of you. Good luck with your quest. Have a peaceful Christmas. I would be interested to hear about the selenium and vit c too. Love to you all.

[babbittybumble]

Hell Paul42 and Crazydaisy,

I know giving Vit C is quite widely encouraged for patients in Australia who have MPD s. I know my son has been taking this for sometime along with other vitamins. All I can tell you is that whatever vitamins he is taking, they are helping him to keep very fit, healthy and well. Bye

[babbittybumble in reply to babbittybumble]

Sorry, that should be hello Paul and Crazydaisy

[Canadacaj in reply to babbittybumble]

Hi Can you tell me what protocol your son is taking for Vit C. I keep hearing more about this as an adjunct to cancer, and specifically for MPNs. Is he taking IV VIt C? Any help would be appreciated.

Thanks,

[babbittybumble in reply to Canadacaj]

Hello Canadacaj. When our son was diagnosed with Primary Myelofibrosis almost eight years ago now through routine blood results ,which were abnormal he not only saw a Haematologist but also went to see a Professor in Dietetics. This professor started him on many vitamins but wanted him to start weekly intravenous infusions of Vitamin C. He did not take this up as he has quite a responsible job, has not told many of his work colleagues about his blood problem and did not want to spend a day a week in hospital. He does however take this orally and has done since diagnosis. All this is done with the full approval of his wonderful haematologist .Initially it was thought he may have needed a Bone marrow Transplant within two years, but almost eight years later he is only on Aspirin and his vitamins, .I do know he is very very lucky in that so far it is not really affecting him. He keeps very active and most of the time has a very healthy diet. When he last saw his Haematologist and his bloods were checked, he told him that whatever he was taking/doing to carry on as his bloods results are very stable Take care everyone. Hope this helps .

[bernie62]

Hi shoosh, I thought my ruxolinitib, had stoped working. my spleen had grown to 22cmt. my heamo. had booked,another biopsey. and i was told i would have to go on anoher trial drug. I was worried, about what was going to happen next. the thing i knew i got shingles, which i still have, after about 12 weeks. then my wife asked me about the size of my spleen. i was shocked to find it had shrunk to about 12cmt, so it looks like ruxolinitib has started working again. So you never know, it might start working again for you.

Lets hope so, dont give up. All the very best.

[Hidden in reply to bernie62]

Thank you so much Bernie 62. I guess there is always hope. Now we wait for the specialist to get back into contact with us next week with the next move.

Best wishes to all

Shoosh

[Canadacaj]

I too have been in contact with the fellow from Australia who took Vit c and selenium. I would like to hear of more people who have had results with this protocol as medical people think it is not effective. But when you are ill with MF as my husband is, then looking at other options seems worthwhile.

I do know that people with MF can end up having leukemia at some point. Not a high percentage - but some do.