Options when MF is advanced

[47Robert]

I have been transfusion dependant for about 4 years, averaging 2 units about every 4 weeks. In the last six months I have been getting 2 units per week. Can't seem to get my HGB above low eighties and my platelets are around mid forties. Currently can't have iron chellation medication because of low platelets. I am on 5mg Jakavi twice a day, which is keeping my spleen size down. My appetite is often lacking and I have lost 7Kg in the last 6 months.

I am trying to find a positive to concentrate on but I don't know of any new treatment options.

Can anyone see a comeback from this position?

[Jlah]

Hi. I can’t comment on the treatment etc but wish you well and hope things improve. Jacquie x

[Arknj]

Hi. Have you been offered a stem cell transplant?

[eire]

Has your haem suggested combining rux with another drug? Arknj also mentioned transplant though not everyone is suitable. Keep an eye out for possible trials. I have advanced MF take 25 mg rux twice a day though it's not shrinking my spleen unfortunately!! I'm not transfusion dependent though I was for many years. A lot of us have the same diagnosis but different problems it's a case of finding one to suit you. It's a very rocky road but consider transplant or trials. Good luck.

[D1i2a3]

Sorry to here what you’re going through my platelets are usually high am anaemic I get Desunin from doctor I feel they really help with fatigue hope you feel better soon Diana

[beetle]

Hello Robert. I too have been transfusion dependent for about 5 years. I’m being transfused about every 3 weeks. My platelets are in the 30s most of the time but I am having iron chelation using desferal (desferioxamine) two nights a week which has brought my ferritin down from an alarming 11,000+ to just over 5000 but the progress is slow. I am not a candidate for transplant and low platelets means exclusion from most trials. Have you considered transplant?

I have changed to a Mediterranean diet and normalised my cholesterol and blood sugar. I do generally feel better but life is still limited by fatigue and breathlessness.

I hope you are able to find a way forward. My very best wishes, Jan

[Goldfish212 in reply to beetle]

Hi beetle

My partner (on Rux and hydroxea) diagnosed with post ET myelofibrosis a few months ago has had a few transfusions. Can I ask if when you received transfusions did they make you feel a lot better, re energy levels etc as he does not appear to get much benefit from these. Unfortunately he is also not a candidate for transplant. His platelets are in the 40s just now. WBC also on 40s

Extreme fatigue is his problem with him being able to do very little>

[beetle in reply to Goldfish212]

I have some bizarre symptoms when I am anaemic. I hear my pulse very loudly in my ears - left one in particular. I usually look very pale and my breathlessness and ‘heavy muscle’ fatigue are increased. I also get persistent headaches. After transfusion the pulse goes from my ears and I look a better colour but the effect on fatigue I find quite variable. Apparently this is not uncommon and can depend on the freshness of the blood and the donor to some extent. So the short answer is yes, I generally feel benefit from transfusion but the benefit is variable

[47Robert in reply to Goldfish212]

My transfusion experience is very similar to Beetle's. For the last couple of months my appetite has waned. It sparks up now and again but then slips back.

[markokrist in reply to beetle]

Hi beetle!

My mom is on Jakavi and apparently it stoped working,because spleen is enlarging and she suffers big pain from that, do you have any symptoms of enlarged spleen? Doctor said,that to drink painkillers is not good idea and decided to put her on Hydrea as well,so waiting for some improvement, but still I`m worried how to help her with that pain.

[beetle in reply to markokrist]

Hi again. Yes I have enlarged spleen that can be quite painful and I also have bone pain so my Haematogist put me on buprenorphine patches. I would rather not and I’m thinking of trying CBD oil but that can conflict with Jakavi. It’s all a bit of a minefield! I hope your mum finds some relief soon.

[Leighcox85]

Hiya Hun I have mylefibrosis to and I know exactly how you feel I have heard a new drug is in trial at the minute and that it not only helps with symptoms it also reverses the fibrosis in the bone I can’t think of it’s exact name but I remember cp100 iam sure others have heard of this it’s good news for people like us stay strong Hun and find hope in the people you love sometimes things seem so hopeless but remember theirs always hope if you ever want a chat please feel free contact me xx

[eire in reply to Leighcox85]

Would it be Avid 200. Information was posted on 27th April on this forum. Also MDM 2 posted 5th july. Both sound very promising and yes there is always hope.

[Meatloaf9]

There is always hope. Keep the faith and never stop fighting.

[Bluetop]

I can't offer any real suggestion, except to restate what eire suggested, that combination therapies seem to be being used more frequently. I wonder if that might be a possibility. I do wish you well.

[47Robert]

Thanks for the many replies. At age 72 a transplant is not an option for me.

My haemo is checking out potential trials at Peter Mac in Melbourne.

Low platelets is a drawback.

[babbittybumble]

Hello Robert. There is a Dr Ritchie who is head of the bone marrow transplant team in Melbourne who is very knowledgable on all MPNs and takes a great interest in his patients.He seems to be very aware of any potential treatments. I hope you get some help soon,Bye Gill

[47Robert in reply to babbittybumble]

Thanks Gill. I will mention Dr Ritchie to my haemotologist

[Rachelthepotter]

Hi. I’m not in your position ( yet) - I do have MF and am Inter 2, so I suspect its a matter of time. However, I’ve been given EPO injections to use and they do raise my HGB levels to around 110 or so. I don't feel as well with the HGB kept up by EPO as I do with a transfusion , ( as I’ve posted here before) but it does seem to be a better bet than HGB in the 80s for me. We can all have very different responses to treatments , so EPO may not do it for you, or may not be available to you. Maybe its worth discussing with you haem.

Rachel

[47Robert in reply to Rachelthepotter]

Thanks Rachel, I have never had any specific treatment to raise HGB other than transfusions, I will ask the question.

Bob

[Pte82 in reply to 47Robert]

This is a link to the Townsend Letter December 2017. Research each of the components mentioned as it applies to myelofibrosis. Always consult with your health care professional before using any supplement.

townsendletter.com/Dec2017/...