A bit disappointed

[lizzziep]

I’ve seen my haematologist today. My blood results were pretty good, all in normal levels except a bit anaemic, so the EPO dose has been increased. I’ve been on peg interferon for 8 weeks.

However, I requested quite a few weeks ago for referral to Professor Harrison at Guys, my doctor was reluctant to do this, he says he now has done so but via mail not email. I have contacted her myself to inform her I would like her input and she has replied, but obviously has to wait until my doctor gives his say so.

I have post ET MF, at the moment hardly any MF symptoms, but I do have the ASLX1 mutation amongst others. Professor Harrison did reassure me that having it does not necessarily mean I definitely will develop AML but of course the possibility is there. At the moment I don’t have any blasts but I know that can change. I am interested in having SCT but at 70 I may not qualify for it. My local doctor is very much against it, he says I wouldn’t be suitable for it, despite no other health issues. I was hoping that I would be able to discuss my treatment with the Guys team but will have to wait a bit longer.

Basically I am having great difficulty in accepting I may not have that much longer to live when I feel so well. I suppose I am clutching at straws hoping Professor Harrison will say actually you’ll be ok and live at least another 10 years. I know some people do live well with MF and the bad mutations but my doctor seems to think that scenario is unlikely for me!

I haven’t told any of my family, including my husband, that I may not be here in a couple of years, I want all the facts and options before I do that. Plus it was my son’s wedding last week and I didn’t want to put a downer on what was an absolutely wonderful day.

Anyway, I’ve got that off my chest now. Hopefully I’ll get to discuss any options with an MPN expert very soon.

Thank you for listening/reading!

[Cja1956]

I feel for you. It’s so difficult living with this cloud over your head. I am also post ET but diagnosed in 2019.

[Cja1956 in reply to Cja1956]

I meant also to add that in the last several months two transplant specialists and my hematologist have been telling me it’s time to get a transplant, and the sooner the better. I went on Jakafi in June and now my transplant doctor said I’m doing so well I can wait. They had already found a donor and everything. This disease is certainly confusing.

[lizzziep in reply to Cja1956]

Thank you. It certainly is confusing!

[mhos61]

So sorry to hear that you have been put in this position. I really feel for you.

Ideally, your Consultant at Rotherham should have ‘copied’ you the patient in to his referral to Professor Harrison, it’s good practice. I was copied in when I requested a referral. At least that way you would have the evidence.

Maybe you could ask for a copy of the letter. If this is too difficult for you, you could contact Guys and explain that your haematologist has agreed to a referral a few weeks ago, but has requested this by post, and you’re concerned to know if they have received the referral. If not, ask is it possible that they could contact your haematologist at Rotherham to confirm the referral.

[lizzziep in reply to mhos61]

Thank you. I have emailed Guys and asked if he has contacted them, and given all my NHS details and permission to see my records etc. Hopefully I'll hear something soon.

[Otterfield]

Your local doctor has no business telling you that you would not be suitable for SCT. General haematologists just cannot know that. It sounds as if you will be able to talk to Guy's, but I suggest that you phone to make sure they have received the referral.

Nobody should be discouraged from doing everything possible to extend life, if that's what you want. Be firm with your doctor and if the team at Guy's think it's worth pursuing SCT, please insist on referral to an SCT specialist.

I understand your fears about how long you will live, as I have been through that. Nobody can know, least of all your local doctor and many people do survive for a long time, even without a transplant.

I wish you the very best, Jennie

[lizzziep in reply to Otterfield]

Thank you

[Scaredy_cat]

I agree with otterfield. She has been my beacon as she had her sct a few months before mine in January aged 70. If you look at some of my old posts from last autumn you'll see the difficulty I had making my mind up. I was strongly encouraged to go for it by my local mpn specialist. She referred me to a transplant centre where again I was encouraged to go for it as I had a median life expectancy of 3 years though I had no particularly bad mutations. I should stress that they do a thorough pre transplant health check which I passed but I had no comorbidities like diabetes, high blood pressure etc. It was a very stressful time for me and you will need a strong partner/person during the first few months of recovery

[lizzziep in reply to Scaredy_cat]

Thank you. I know my husband and family will want to care for me, hopefully I will get more information soon. I am overweight and have arthritis but otherwise ok, so fingers crossed I will be eligible.

[Bulstrode5]

I have the same mutation as you and had MF since 2004. I do not have a suitable matched donor so I cannot have a transplant, I am 64 now. You need to see an MPN specialist to answer your questions not just a haematologist. It is v hard but I focus on staying fit, eating well and looking after me. Best wishes xx

[Bulstrode5 in reply to Bulstrode5]

This may help u, I know of 2 people, one in the UK who have lived with MF for 30 years, I hope this provides u with some reassurance. X

[lizzziep in reply to Bulstrode5]

Thank you. I know only a percentage of people succumb to progression, it’s just you don’t know which percentage you’re in! There is also the problem of finding a matching donor.