I’ve seen the consultant this afternoon. I repeated I want a second opinion from Professor Harrison, he agreed, but said he’d never referred anyone to her and didn’t know what to do! Told him I had just emailed and asked about it, hopefully he will do the same.
Anyway, after a month on peg interferon (45mcg) plus one Anagrelide per day my platelets have fallen to 188 from around 600. White cell count to 4.5 from 9.3. So have been told to stop the Anagrelide, carrying on with same dose of peg and EPO. Other counts ok or very slightly higher than normal.
I asked about mutations, he said I had the ASXL1, CALR and UTAF1. I also asked about SCT, however he said he thought that would be too toxic and to keep on with peg.
Obviously I am very concerned about transforming to Leukaemia, and would like to prevent that if possible, even though he said it would probably be a couple of years at least. I am 70 and not ready to go yet! I will see what Professor Harrison’s opinion is.
How did others consultants contact Professor Harrison?
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lizzziep
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Well done Lizzie, my wife is on hydroxycarbamide and Anagrelide. Platelets are often under control, neutrophils often way over 35 Hgb often below 100. We will be following your posts to see if it's worth asking for a referral, we have once already to a poor response.
I'm no expert but I think it's the ASXL1 mutation that's associated with leukemia. I am amazed that your haematologist doesn't know how to make a referral! I think that my haematologist just wrote to Prof Harrison.
Well done, your Haem is a bit concerning, on a simple issue of referral and what he said about SCT being toxic, I don’t know much about SCT but have not heard them being referred to as toxic, maybe others can chime in on that. Re the two year bit , in my humble opinion I would take that with a pinch of salt for now , let’s see what Clair Harrison has to say. As previously mentioned just because you have a certain mutation or mutations it just mean any change is definitely going to happen. I know several patients with ASXL 1 for years and they seem to chug along as normal. Try not to worry until at least you have all the facts from expert Haem, it may be better than you think.
Thank you. He seemed to think because he’d consulted the multi disciplinary team that that was a second opinion. I would much prefer an mpn expert opinion. It is hard not to worry without the full facts and knowledge from someone like Professor Harrison.
I know its hard not to worry especially with uncertaintities but we have to try. A expert may paint a different picture.If it were me I would be very persistant and focused on seeing Clair Harrison or similar expert. You need proper info and proper guidance, I might be wrong but I am not sure your getting that yet.
Toxic is a strange word to use. Obviously the conditioning chemotherapy is toxic - it's meant to be!,To destroy existing cells in preparation for the transplant. But to describe SCT as toxic is misleading.
Hi, I recently emailed Claire Harrison at Guys, told her my storey and asked if a shared care thing would be acceptable as we do not have a n MPN specialist at my hospital. She responded the next day and was happy to do this but I would need to mention this to my haematologist, she was very understanding as I felt awkward with the idea of bringing this up. The following week I had a clinic appointment and at the end of the consultation I let my haematologist know I had been in contact with Clair Harrison, to which he smiles and said she had already been in touch with him to discuss this. He has sent a copy of our consultation to Claire with my recent bloods and a suggestion that she may like to set up a telephone appointment with me (it would be a long way to travel for a face to face). I am very happy with the outcome. I would be concerned if my doctor did not know how to contact her...she is famous in the field of MPNs. Good luck on your mission.
Hi. It sounds like your doctor just didn’t want to refer you. I encourage you to tell him you want to be informed as soon as the referral is made. His knowing you’re “watching & planning on it to be done” should both prompt him to do it & to do it sooner. Congrats on great advocating for yourself. Thanks for keeping us informed. Katie
I was referred to my local hospital by the GP. Haematologist at my local hospital then arranged blood tests. From blood tests he diagnosed ET. He thenimmediately referred me to Prof Harrison who’s team I’ve been under ever since.
I asked gp, who said no she was in a different health authority. My heamotologist referred me without any trouble, she also did a bmb as the proffesor like to have the results of this. I think it took 12 weeks for appointment to come through.
Your concern is correct. Your genetic mutation will eventually lead to leukemia transformation, but it will take a long time. However, you are already 70 years old, which is also your advantage. I hope you can live well to be 80 years old or above. Suggest you try some immune modulators, which will be helpful to you. I also have an AXSL1 mutation, but I am young and cannot escape stem cell transplantation. I am very afraid of that day's arrival.
Please be careful what you say here. You cannot know that "it will take a long time" for a person to progress to leukemia (AML). We also cannot know that AML is inevitable. SCT need not be viewed as something we hope to "escape." Yes, it's really tough, but potentially curative. Also, I have learned that the outcome tends to be better if we go into it while relatively well, rather than wait for progression to AML or indeed to any other condition which might make SCT unwise. We should take advice on this ONLY from an MPN specialist or an SCT specialist in order to be able to make the right decision.
I would call your specialist nurse & ask that they make sure the referral to Prof Harrison has been done as per your recent consultation.
Specialist nurses are amazing at chivvying things along & it wouldn’t hurt to provide them Prof Harrison’s secretary’ s contact info so they can contact her direct to confirm the preferred referral process
I emailed myself as couldn’t get any of mine to do a referral as I think they felt I disagreed with their treatment . Luckily Professor Harrison rang me . Agreed with Interferon instead of HU I was on & never looked back . I had to go back to my local Dr to get letter sent to Guys 👍
I've been in touch with the specialist nurse today with the email address and a reminder for my doctor so hopefully will hear from Professor Harrison in the not too distant future.She may agree with his treatment plan but also may have different ideas.
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