I’ve just had a follow up call from Guys about my recent appointment there. One of the consultants is going to phone me next week about going on a trial for new drug’s which are coming out for people with the CALR mutation. I don’t know any more yet. It would mean a few trips to London though. Anyway I will have to see what they say about the drugs and of course there will probably be some weird and wonderful side effects to be considered.
I’ll update when I know more 😁
It great you are now under Guys care, probably the best in UK, I hope it goes well with the trial and who knows you may not have side effects.
Of course the side effects could be boundless energy and looking 30 years younger - well I can hope! 😁
That’s what I call positive useful thinking, you might be right , some report feeling much better on changing their meds, not all of course, fingers crossed 😀
Great to be involved in new trial. Worth the trips to London. Do hope new drugs seem like they might be good for you .
Looking forward to your update
Well it looks like proper care does exist on the bus after all!!!
Spelling is awful meant nhs.keep us posted on the trial and as for side effects it's seems to be the norm.I'm hoping my referral to Guys goes through, it looks like the care there is top notch.
Dr Faisal did say they had lost some of my blood results in the lab! The new system isn’t very good - the previous one didn’t need changing but someone decided it did!
I think they are having teething problems with the new system (which is called Epic!). However, it allows for the very quick on-line consultation of results and consultant letters, appointments etc. via a new portal. All this I discovered whilst in the waiting room at Guy’s where I was for a loooong time as the system was not passing through my data to the blood sampling nurses ….
Not sure about this, but I am thinking this may be for the vaccine-based treatment for the CALR mutation. Please do let us know what you learn. Thank you in advance for considering a liciacl trial. It is the opnly way treatment will move forward.
Keep us updated pls. That’s great news ❤️
Wel done Lizzie, you're half way there, with having a positive attitude. Keep well, and light the way .
Thank you for posting. I have CALR myself, so I look forward to hear your updates 🤞
Amazing I dohope it’s beneficial for you. I too am at Guys and have et Calr.
I have a phone consultation next week. I’m going to ask. No doubt I haven’t been called because I’ve had a stoke and doing really well on Peg.
Hello, that is good news, I am interested in this trial and also have CALR mutation, please can you tell me how you got referred to Guys? I am under haematology at my local hospital and have asked them to refer me for a second opinion but apparently have to go back to my GP for them to refer? It all seems very long-winded and not sure if this is really the case, thank you and best wishes!
Hi, I got Claire Harrisons (Guys) email address from this site so I emailed her directly. Like you I am under the care of local haem with no complaints but Prof Harrison has a great reputation and I felt that I wanted to be part of all that. She emailed me the next day , she spoke with my haem doctor, she arranged a telephone appointment with me (she had access to all of my details) and I felt happy and reassured after the consultation....everyone happy. I did not need to go back to my GP by the way. Good luck.
For some reason Guys don’t have access to my records, even though I have given my permission!
I did not have to do anything like that, the communication between the two happened after my email. Prof Harrison told me that communication between haem docs relating to patients often happens on an informal basis which is good to know from the point of view that the info is shared for the benefit of the patient and the best treatment outcomes.
I asked my local haematologist about getting a second opinion he said he would write to them, however they did not receive anything from him, I phoned my GP and asked them to refer me, that was the Friday afternoon, he must have emailed immediately as I got an email with an appointment from Guys on the Monday morning!
I think that may be excellent news. I am following news about this drug. It is being developed by a US company yet none of the trials so far are at US sites. I plan to ask my doctor about it when I see her next.It is Thanksgiving Day here. I am truly thankful for so much and especially for the people and support on this forum. Beth
I believe the drug is produced by INCYTE and referred to as INCA 33989. There was news of this at the Ash conference in December 2022. Beth
Had my annual appointment with Prof Somervaille at Christie's in Manchester yesterday (22ndNov). He also mentioned this trial taking place next year for CalR mutation ET patients.
They appear to be targeting the specific CalR mutation with a vaccine based treatment. There was also mention of a second trial, though can't remember what form that was taking.
Interesting times ahead !
I will update next week 😁
That’s great news worth a try 👍
wow, what great care you’re getting. They seem on top of your best interests. As others said, let us know how the trial goes if you do it. Katie
Good news
some good news
