Phone Appointment with professor Harrison

[Mostew]

I had appointment today.

Was organised , sending her photo of my arm , blood test results and some thoughts I wanted to discuss.

Waited from 11 till 12.45. Rang her secretary who is very helpful. He said she would ring soon but then got back saying 2pm ...

Professor Harrison was lovely. Said she had as much time as I needed .

BUT she hadn't seen the email .so hasn't given opinion of my arm bruises .I've sent it after appointment.

Pleased she has forwarded list of my supplements to pharmacy . They are getting back to me..

Seems as I already have underactive thyroid it wouldn't get worse if I every decided on Interferon.

Contrary to my last talk with NORFOLK hospital who wanted me to increase meds. she is happy with my platelets steadily going down so still taking hydroxicarbamide every other day.

Going to have a face to face appointment with her next year. I dont feel a need for it to be sooner .

Really pleased to hear how relaxed she is about sun. As long as using sun block I can be in sun. I got impression I had to sit in shade!!

Will let you know what's said re. Bruises hopefully soon

( I had blood test yesterday and strangely another one appeared about an inch from were blood taken but no mark on place taken... xx

[mhos61]

Pleased to hear all went well. A good consultation makes such a difference to how you feel.

[Mostew in reply to mhos61]

Thank you. Yes it really does ..

[Cja1956]

Glad it went well.

[Mostew in reply to Cja1956]

Thank you

[SarahPV]

So glad it went well. I feel so much better about my situation having spoken to her. Really feel she’s in your corner. Hooray x

[Mostew in reply to SarahPV]

Thank youShe seems to have endless time

[hunter5582]

It is great it hear it all went so well. It makes a huge difference having a MPN Specialist who actually spends time and listens. And explains what is real and what is not. Glad to hear that you can be reasonable about sun exposure. Just take due precautions. much better than feeling like you have to live in a cave.

Do please let us know what the lesions on you are are. It was hard to tell from the pics whether these were hematomas or some form of vascular ulceration. Better safe than sorry on something like that.

Also glad to hear that you would have he option for IFN if you choose to take it. Also nice that she is good with seeing a decrease in PLT as an acceptable outcome rather than using an arbitrary and often irrelevant numeric target as the goal. Ultimately it is quality of life that matters the most.,

All the best my friend.

[Mostew in reply to hunter5582]

Had an email from the Professor this morning . She thinks may be due to asprin but I've been taking for over 2 years ...Stopped curcumin while waiting for thoughts from pharmacy.

Do hope I can still take it.

Warm wishes to you and everyone

[hunter5582 in reply to Mostew]

I used to get unexplained bruising due to aspirin when my platelet levels were higher. That is the peculiar thing about thrombocytosis, you also get increase hemorrhage risk. Aspirin protects from thrombosis, but increases risk of hemorrhage. As we age (age>60) our risk of hemorrhage due to aspirin increases. It is all a balancinging act.

Curcumin is also a balancing act. It does mildly potentiate the aspirin blood thinning effect. For me, it is worth it. Curcumin makes the difference between being functional or nonfunctional with the osteoartritis.

My old MPN Specialist (Dr. Spivak) took me off aspirin due to increased risk of hemorrhage. He said "you really do not want to get a brain bleed." Two weeks later I was diagnosed with a hemorrhagic brain tumor. Oops! The tumor is gone now, but may someday recur. I stayed off aspirin for a while, but then the burning pain in toes and feet started up. I decided to try a reduced dose of aspirin (40.5mg qd) (half of a chewable) and it worked. The burning pain resolved immediately. I have had no excessive bleeding/bruising on this dose. I have increased back up to the 81mg daily dose and did not get the increased hemorrhage I experienced before. With the thrombocytosis now well controlled by Besremi, the issue seems to no longer be a problem.

Hope you get it all sorted soon.

[Mostew in reply to hunter5582]

Yes getting right. balance takes persistent and luck …

They are fading now ..

Good to here you are able to tolerate aspirin again..

[beetle]

So glad it went well. She really is a special doctor isn’t she. I am fortunate enough to have been seeing her regularly once a year for several years now and my local Haematologist used to work with her so they have a good line of communication. I’m off to see her in a couple of weeks and I’m working on my list of questions! It is certainly worth the effort of going to London to see her. It is a perfect situation for me too as my sons who live in and around London always organise something special for me - a sightseeing trip on a bus round London, theatre visits ( though not in the pandemic) special restaurants etc. They even drive down to Devon to collect me and bring me home so I don’t get covid exposure on a train. I am very spoiled!!

Best wishes, Jan

[Mostew in reply to beetle]

How lovely to have a day out and such nice sons . You deserve to be' spoiled ' . Looked afterI'm looking forward to seeing her in future .

Let us know how appointment goes

X

[Peachjoy]

Hi Mostew, I hope you get some answers about your bruises. I was interested in your news about the sun. I’ve been very worried about that as I might have to start HU any time soon.

I spend a lot of my time walking, golfing, playing tennis, swimming and socializing in Spain! So have been worrying about this a lot.

Hope all is good with you.

[Leighcox85]

I have mf I get bruises all the time Iam with Claire Harrison but often see donal Mclornan I get a lot of quite severe bruising on my legs and stomach and more recently on my hands and feet I was told it’s platelets that cause it and not to worry it’s happened now for years my kids joke don’t hug me to tight I will bruise which is true so glad you had a good appointment the team are really good things have changed a little since covid and waiting times are like that quite often I see my doc at least once a month every fortnight since beginning of this year and it happens a lot but they will do there best for you if you are worried forward the pics to cns and they will get back to you pretty quickly

[Mostew in reply to Leighcox85]

My platelets are going down . Still to high but not been problem when higher.. but I suppose things change….Glad you are positive and can have a joke …..

[RaspberryRen]

Glad you had a good appointment!

Can I ask - I'm also under Prof Harrison at Guys but have never had an appointment directly with her, how were you able to get that? Is it something that can be requested?

I was only diagnosed a year ago so have quite a few questions I'd love to be able to run by her.

Thanks!

Tasha.

[Mostew in reply to RaspberryRen]

Hello TashaI asked if I could have combined care.. I would prefer not to have local hospital but thought she wouldn’t agree to just seeing her. And I'm aware I’m not the most needing of patients at present . So wouldn’t want to take up to much of her valuable time .

Give her secretary a ring or email. He is so helpful. Unlike my consultant secretary who can be very dismissive…

[Wyebird]

Thrilled you are happy with Proff H. She and her whole team are marvellous.Glad you are at ease now.

[Mostew in reply to Wyebird]

Thank you. Defiantly happy to have her on board …

[ChillyAsh34]

Funny you saying about the sun I have had skin problems on my arm after about 6month on hydroxycarbamide I am in Cyprus at the moment ,I have covered my self in piz bruin factor 30 every inch of me ,then coconut and argan oil after sun low and behold my skin is clear and for last 5month I tried every cream stayed covered nothing worked

[Mostew in reply to ChillyAsh34]

Interesting. So do you think it’s combination of all 3 things or coincidence or the ‘foreign’ sun !!! Whatever it is long may it last and enjoy Cyprus

[ChillyAsh34 in reply to Mostew]

I was wondering if it was a lack of vitamin D because I covered up in the sun and maybe the sun cream who knows but it's worked I am on aspirin and had the bruises they have gone again now

[Mostew in reply to ChillyAsh34]

But if we are using sun cream we arnt getting vit d are we ? Sun does heal things though .

I had a horrible rash on back 2 years ago . It only went in sun

Main thing is your bruises have gone.

[ChillyAsh34 in reply to Mostew]

Not sure what caused my skin to clear just know it's great

[Oscarsboy]

Great reassurance for you and so good to see so many positives. Im in Portugal at the moment and just sit in the shade so very interested to read your comments re the sun and many other interesting factors. I too get unexplained bruises but am also on aspirin. Thank you for sharing.

[Mostew in reply to Oscarsboy]

Enjoy your break .

[Devilgirl]

I can relate to the unexplained bruises & am also on Aspirin. I also found the information re the sun very interesting thank you.