It's been awhile since my first BMB, but have been recovering & processing the results. I had a hard time with sedation & took me some time to reset myself from that ordeal (getting sick, having two veins blow out with blood draws & iv).
I lost weight & only weighed at 104 lbs that day!
I was diagnosed with ET before the BMB, then found out I have intermediate MF.
I was taking 1500mg of Hydroxyurea but this week went up to 2000 because my platelets hadn't moved down much, then went up. My hematologist is considering Jakafi (ruxolitnib) but I won't know until this coming week after he checks more results from the BMB.
So far I'm tolerating the HU well but if it isn't bringing my platelets down I really don't want to go up & have some side effects crop up.
I know Jakafi can help but worry about skin cancer. (I've never had it but don't want to get a new cancer!!). I guess it's all the risks involved when I've been feeling good overall (I'm a woman, 66).
The good thing is my oncologist in hematology wants to put me in touch with a teaching hospital so if I would need a stem cell transplant.... hoping that is not needed but it's good to make a plan.
I also am encouraged to enter a clinical trial if there is one in my area, so another plus.
I feel very tired, and even though it's been tough just getting out of bed when all I want is more sleep, I am lucky that I haven't experienced any other side effects.
So it's ET & Intermediate MF.....on the journey we go
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Androg
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I don’t know your platelet numbers but if I was offered a trial I would go for it. Are you in the Uk? My platelets stoped responding to hydrox so I started to swap to anagrelide. I couldn’t tolerate the required dose of that either so now I’m on both. Our diagnosis is slightly different so I can’t tell you what to do. Good luck
Meanwhile, this is a thought remember, because I just have ET ask about anagrelide. It might not be suitable fir your condition but on the other hand it might be.Take care xxxx
Hi, Androg, it sounds like we have a similar story. I am 65 and and in 2019, I was diagnosed with post Et mf intermediate 1 with a BMB. My doctor also sent me to consult with a transplant specialist. I also have high platelets but low red blood cells. I was very anemic when I first went to her. My previous hematologist had a difficult time balancing my numbers. At the time, I was taking Jakafi and anagrelide. She took me off both and put me on Hydrea and Fedratinib. You should ask your doctor about Fedratinib because it’s the first drug approved for MF in the US. It does make me extremely tired, so I went from 4/day to 2/day to 2 every other day. I take 2 Hydrea every day plus baby aspirin. My numbers steadily improved. My hemoglobin was 8.9 and my platelets were about 800 when I started seeing her. Now my hemoglobin is normal and my platelets hover in the 5-600’s. Just thought I’d tell you my story in the hopes that it might help you. Let me know how you are doing.
Thank you Cindy, for you thoughts! We do sound very similar. I don't have anemia at this point (I made sure to ask since I was extremely tired even before starting Hydroxyurea.I will ask about the drug, Fedratinib. He only told me about Jakifi, I wonder why?
I will see him on Thursday, so your message came at a good time 🤗
I’m sorry to hear that you have joined the merry team with MPNs!
I am 73 and have had ET since 2003, in 2004 I had a BMB, I was told that I had MF Intermediate (66 At the time) I had been on hydroxurea and anagralide for ET but I was eventually taken off that because the MF made me so exhausted and my red blood cells went down to 8.
I was put on Ruxolitinib and an injection once a week of Epoetin 75mg (commonly known as Eprex) my platelets came down my red blood cells went up and are now steady at 10.1.
This completely changed my life! I wasn’t tired anymore and felt more or less ‘normal’. During this time I had a replacement hip and knee replacement. I recovered from these and continued on Ruxolitinib + Eprex.
I am now in my 7th year of MF and I’m starting to feel tired, occasionally I sleep most of a day but this is only spasmodic. I am still on Ruxolitinib and Eprex and my haematologist is keeping Fedranitinib on the back burner.
I really do hope you find a medication to sort you out.
Can I just ask why you think skin cancer is possible?
Hi Sue 🌼. We sound similar, don't we!Yes, I have joined this rare "club"!! I am glad to have joined here as a way to talk with others as this is a way to maybe figure out what may help through what has been tried for the rest of you who have gone there before me 💓
The skin cancer worry was something not mentioned in general side effects you read, but the company's own literature says it can cause non melanoma skin cancer. There are 5 types of skin cancer associated with Jakafi, including aggressive squamous cell carcinoma.
I know the drug may be of benefit, but to risk another cancer is one I have to think heavily about.
Thanks for writing, I have so much to think about!
Hydrea makes your skin more sensitive to the sun. I have had treatment for actinic keratosis and basal cell skin carcinoma and use 50+ sunscreen now.. No idea if Jakafi does the same, but my husband has similar problems and does not have other cancers or treatments. These things are also associated with ageing and probably pollution and deterioration in the protective ozone layer. Blame the the sun! It keeps us alive but you can have too much of a good thing. 🌞
Hello AndrogVery best of luck. I have progressed from PV to myelofibrosis and saw my hematologist today: I live in France. I am moving on from Hydrea to Jakafi as Hydrea does not now control by WBC count and my spleen is enlarged, should help with the itching too.
As you say, onward and onward......I don't sleep too well at night and then drop off in the day, easily tired, but still alive.
Hello to you in France! I will never visit there but go on armchair travels to your lovely countryside 🥖🍷I am right with you on enjoy every day & trying to keep my chin up.
I don't have an enlarged spleen yet, so there's that as a plus at this point in time.
How has your reaction to Jakafi been? How much do you take, if you don't mind me asking.
Dear Androg I haven't started Jakafi yet but have been told it will help a lot, although the first few months need careful monitoring and my blood count may well drop initially, also I will have lowered immunity so need to be careful.
I love it here. We are in a quiet village in the foothills of the Pyrenees. Healthcare is unbelievably good. The air is clean and fresh. I love the language! The govt. is relatively sane, the people I meet are respectful and friendly although not as outgoing as the Spanish.
Jakafi I will take morning and evening and then it depends on blood tests, every two weeks initially. Can you believe I am entitled to free taxi transport 120 km each way?
Also, all my healthcare costs are 100% for this and my heart condition. I love the French!
My husband had PV then progressed to MF after 4 years he was on hydroxy but it made him iron difficient and he was absolutely drained
He started ruxolitanib two years gone February and it's really changed his life all his bloods are in normal range now and he's got no exhaustion he works full time he's 49 this year.
He's got primary MF he's also been for a stem cell transplant assessment if ever he needs one in the future his sister's weren't a match but he's got 9 unrelated donors on the DKMS register which is absolutely amazing .
We hope and pray he will never need a stem cell transplant it would be the very last option.
Hello Tracey 🌞I'm glad your husband is doing well on ruxolitnib! It gives me hope for what's likely next. Did he get any headaches or dizzy times when starting?
I have a feeling I'll need donors for stem cells if I ever need it because I don't have many relatives that are healthy enough to donate....but at least, like your husband, I will have that lined up if I need it.
I wish you & him all the happiness & health I can!! Thanks so much for your reply, you people are my lifeline right now 💓
He was suffering hurrendous headaches extreme exhaustion all before he was diagnosed.He then started having blood removed weekly to get his HCT level down then went onto three monthly blood removal.
This lasted about 3 years .
He then opted for hydroxy as he was exhausted and this helped him for about two years then he became iron difficient and was back to being absolutely exhausted .
Ruxolitanib has been absolutely fantastic for him.
He had to have it agreed by the stem cell transplant team before it could be approved by his consultant.
His bone marrow biopsy showed primary MF .
So now he's post PV MF.
To be honest he's been quite well since starting ruxolitanib it's worked wonders for him. We just hope and pray it lasts 🙏🙏.
This forum is amazing for support and to talk to people who actually suffer from an MPN.
I am hoping for a cure on the horizon also. You said exactly what I have thought ~ the stuff you read IS so scary! I'm glad to hear his story after his struggles with feeling awful & also having to move to the new drug as things weren't working out.If we can hang in there, we might see some great advances in this field. I have my fingers crossed for all MPN patients across the world (((🌎))) that's hugs and positive vibes going out grom me 🤗
Dear TraceyKnowledge is strength. Don't believe everything you read on the internet. Medicine has progressed a lot, but there is no absolute cure, we are human and mortal after all. Enjoy what you have, appreciate the natural world and live the life! That is my advice.
There may not be a cure now but like I mentioned medication has come along way and you just never know one day there may be a cure.We enjoy life the best we can and we live to travel. So hopefully this can all resume again some time this year 🙏🙏🤞🤞
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