Decisions, decisions

[lizzziep]

I was diagnosed with post ET MF earlier this year. After NGS I was told I had the ASLX1 gene, amongst others, doctor said I was high risk for transforming to AML, but it would probably be a few years.

I asked to be referred to Professor Harrison, I have asked for this at each appointment. I managed to email Professor Harrison and requested her help with my treatment. I had a reply today mentioning that only 20% of patients go on to develop AML, and that if I wanted SCT I would have to be assessed, she didn’t say anything about sharing the care/treatment for me.

I will be seeing my haematologist next week. As I am already 70 I need to decide quickly whether I want to push to see if an SCT is the right way forward for me. My doctor is reluctant to give full details of my condition such as mutations etc, I usually get a print off of my blood count results, but he says I shouldn’t be Googling stuff!

The appointments only last a few minutes, so there isn’t a lot of time to discuss implications of carrying on with peg interferon or enquiring whether a transplant is the right way for me. When I mentioned it last month he just said it was very toxic to do that.

My head is all over the place trying to decide what is best for me, do I risk not being in the 20% or try to get a SCT to be sure, which wouldn’t be an easy ride.

At present I have hardly any MF symptoms and am on 45mcg peg interferon per week, which, so far, I am tolerating well, plus EPO injection once a week. My blood counts are mostly in normal levels.

Anyway I’ve got that off my chest now, I was wondering if anyone else had been in this position and how they decided which way to move forward.

[hunter5582]

It is unfortunate that time is running out on making a decision about SCT due to age. It is also unfortunate that you current hematologist does not seem to be particularly informative or supportive. In your situation, I would seek a second opinion from a MPN Specialist. I would also consider switching my care full-time to a MPN Specialist. It is important to find a provider who will provide the time and care that you need to make such a complex decision about managing a MPN.

There are a number of MPN Specialists in the UK to choose from. mpnforum.com/list-hem./ Note that none of them can provide detailed individualized recommendations by email. They would need to assess your case when added to their caseload.

The decision you have to make about SCT is complex. There are too many factors for someone to give meaningful advice without knowing full details of your case. I would suggest that the best place to get meaningful advice about SCT would be directly from a SCT Specialist. It seems very reasonable to go through a formal evaluation for SCT. Being evaluated is not the same as deciding to have the SCT. It provides you with the information you need to make the decision.

Regarding information, more is better. While random Googling can take you down needless rabbit holes, focussed research provides you with valuable information. There is a difference. It can be very helpful to attend MPN forums and webinars to hear from MPN experts about MF and treatment options. This helps to provide focus the the other research that you do. Here a few resources. mpninfo.org/conferences/202...

This video is also good.

youtube.com/watch?v=vZsXbWr...(Not working as expected?)

Wishing you all the best.

[lizzziep in reply to hunter5582]

Thank you, hopefully I will hear more from Professor Harrison.

[hall2 in reply to hunter5582]

Thank you for the link to the list of MPN specialists Hunter it’s a relief to see that both of the consultants I have contact with are listed there.

[Cja1956]

Having an SCT is a very difficult decision to make. In order make a more informed decision , you should seek a second opinion. For the last eight months, I’ve had a three doctor tell me that it’s time to do a transplant and to get all my ducks in a row and just start planning for it. It was very scary but I flew to Boston from Florida in June for a consult and he agreed the sooner the better. He changed my medication from hydroxyurea to Jakafi and I’m doing much better and now he’s saying I can push off the transparent to 2024. I was very symptomatic before. I was having night sweats, mouth, sores, extreme fatigue, and shortness of breath. Now I’m not having any of that. This disease is very strange. You also should push to get your results. You may not understand them, but you can always take them to your new doctor.

Good luck.

[lizzziep]

Thank you. I’m hoping to hear more from Professor Harrison, she is the UK’s leading MPN expert. I’ll see if the doctor has anything to say whether she has been in touch with him at my appointment next week. At the moment I’m ok on peg interferon, my blood results were near normal last month, I don’t really have any MF symptoms, I can feel my spleen sometimes, I get the occasional nausea from the peg, and a sometimes sweatsin a morning. I’ll update when I have further information.

[mhos61]

Hi Lizzie.

You certainly need clarification to the question, has your local haematologist honoured your request to be referred to Professor Claire Harrison or not? It’s quite possible that the Professor is just answering questions in relation to your personal email.

I would be more inclined to email Professor Harrison’s secretary before you see your haematologist next week to see if a referral for ‘shared care’ has been sent out. If it hasn’t you have your ammunition for battle and need to be very firm with your haematologist about your wishes and his duty of care to respect what is a very reasonable request.

Appointments lasting ‘minutes’ is absolutely ridiculous at this particular time with your recent MPN progression and the implications on treatment and vital decision making.

Believe you me, you will be able to make a more informed decision after consultation with an MPN expert. The Professor is lovely and will leave no stone unturned in meeting your needs.

Let us know how things go!

[ainslie in reply to mhos61]

Good advice given here

[Solyesh in reply to mhos61]

Excellent advice - confirm that a shared care referral has been received by Prof Harrison's office prior to seeing your hematologist - this is definitely the time to be "politely forceful"

[lizzziep]

Thank you. On the email to Professor Harrison I did say I had asked my doctor about shared care. I’ll see if I can find out if he has agreed to her input.

[Otterfield]

It seems you are not getting straight answers from your haematologist. I'm afraid you need to be politely forceful in asking for shared care. Your general haematologist is not in a position to advise on whether to have an SCT, although his thoughts could be useful in a limited way. My main advice on whether to go ahead and start the process came from Prof Harrison and obviously I gave her opinion a lot of weight. The SCT specialist provided all the information to enable me to make the final decision.

Yes the chemotherapy for SCT is toxic - it has to be, but that's not a reason not to do it. Good luck.

[lizzziep]

Thank you. Hopefully now I’ve had contact with Professor Harrison I will get somewhere with how I need to move forward.

[socrates_8]

Hey Lizzie...

Try not to allow yourself to become too overwhelmed & apprehensive... Yes, of course such a decision is important, however, your "Ongoing -Quality of Life" (QoL) is essential too...

While I can only echo much of what others have said here... I am also ET / MF, (w/ ASXL1+), CALR Type2, & Von Willebrands Syndrome, which all culminate in creating a bumpy ride at times... However, I do recall quite clearly that I was strongly urged to consider ASCT, because ASXL1 usually denotes a poorer prognosis... That Lizzie was 2017, & thus far, my change of lifestyle, diet & exercise regime seem to be holding me mainly stable...

While we are all quite different, it sounds from your ownj reports that you might be relatively stable too... (?)

Like others have suggested, Prof. Harrison might be the best person to guide that decision making...

Me? I am 64yo, just came back from Ridimng a very tough 100KM today... Apart from some general cramping (hot one today!), I am feeling great... My Tissue Typing (TT) to not have the more desirable result of having a sibling 10/10 match...

My QoL is pretty good right now... Hence, I will just stay waiting & watching for now...

Best wishes making your decision Lizzie, you are a wise girl... You'll do the right thing, whatever that might prove to be...

Steve

oxo

[lizzziep in reply to socrates_8]

Thank you. You’re right I’m fairly ok, at the moment. I have very few MF symptoms. I’d actually welcome the weight loss one! I try to eat healthily. I have very arthritic knees so don’t walk far, however I go to aqua fit 5 days a week. I seem to be tolerating the peg interferon very well, I expected loads of side effect but ok - so far. Hopefully, with Professor Harrison’s guidance, I can make the right decision for me.

It’s just with being 70 already (I call it 35 with double the experience!) that if things change there won’t be a lot of options open to me.

[socrates_8 in reply to lizzziep]

Hey Lizzie...

We have a Qualified Yoga Practitioner who is providing ONLINE - FREE – CHAIR–Yoga Classes to MPN Members if you're interested, feel free to check it out...

All pre-recorded & accessible from anywheres apparently...

Her name is Amanda, there's a You Tube & her Post from this Link:

mpn-mate.com/forum/viewtopi...

Best wishes Lizzie...

(Katie is 82yo & I know that she is definitely taking it on, as is Merry...

Steve

[lizzziep in reply to socrates_8]

Thank you. I’ll check that out.

[Mtnlife]

35 with double the experience. Very good !!!!

[ainslie]

You have had a lot of good comments here already. It’s good Clair Harrison gave you info re the 20%, this is what you need, ie proper info from a MPN expert and probably proper info from a SCT specialist. Clearly your local Haem is not enough. I am sure that you’re aware that SCT has its risks so it’s not clear which is the right direction yet, that’s where you need experts to give you proper info to help you decide. I may have mentioned this in a previous post to you , ie try to put your energy in to being very persistent and determined to get to see someone like Clair Harrison , if you can do that the decision process should become much less stressful.

[lizzziep in reply to ainslie]

Thank you. It’s hard for me to question the doctor but I’m getting better at it!

[ainslie in reply to lizzziep]

Yes, it’s hard for anyone but it has to be done , it’s your right to do so

[Poppy6060]

Hi wishing you well and hope you get some answers soon it’s just so sad you have to fight to get them Poppy xx

[lizzziep in reply to Poppy6060]

Thank you x