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April 2, 2014 at 6:57 am #21903
Dear Catherine, Dear friends
I follow the forum on regular basis and I am curious about anti pd1 compassionate use in Europe. My sister had whole brain radiations and just completed 4 sessions of IPI for brain mets . She does not look very well, constantly tired having pain at the back of her eyes. Next week she will have the scans to check if treatments have worked and we are absolutely terrified.
She is being treated at Royal Marsden London.
Just in case IPI did not work I would like to know when Anti pd1 will be available there also.
Please help we are desperate.
MaggieApril 2, 2014 at 12:42 pm #64008
We all wish we knew the answer to this. We haven’t had any centers open in the U.S. yet, so it will be a few months for Europe. But I’m on top of this and will let you know anything I find out asap. STay tuned!!April 8, 2014 at 1:19 pm #64009 Hello Catherine
Thanks for your reply! I’m extremely worried since yesterday we took my sister in hospital she was very confused in her speech , Speaking without making sense. At CT of the brain was taken and she has swelling of the brain and 2 mets. Now we are waiting for the results of the brain MRI and full body CT.
I would like to know if the Braf Mek combo are approved in UK since I read that they might work on brain mets.
Thanks MaggieApril 8, 2014 at 2:17 pm #64010
So sorry to hear about this complication. Can she get the stereotactic radiation? And steroids for the swelling possibly? Yes, the BRAF/MEK is approved in the UK as far as I know. That might help. Let us know how things are going.April 8, 2014 at 2:56 pm #64011LesliParticipant Hi Maggie,
I attended a melanoma symposium in Seattle this past weekend and Dr. David Byrd of Seattle Cancer Care Alloance reported that the Braf/Mek combinations have been approved for use in the UK but that the National Health system just announced that it would not approve coverage (or pay for them, basically). Patients will be required to purchase the drugs themselves (or perhaps with private insurance?). I have read from other forum participants on MIF that gamma knife is available in the UK, but that patients have been told that a biopsy is required to prove melanoma prior to approval for stereotactic radiation. Good luck to your sister, Maggie. There are participants here who have had successfully treated brain metastasis, so don’t give up hope. LeslieApril 9, 2014 at 11:31 am #64012
Thanks Lesli and Catherine
They gave her steroids for the swelling and she is doing fine. Almost back to her normal self.
Scan results are out 2 lesions in brain that seem to have grown and one in her lower back that was not there before. She had total brain radiation back in December and a course of 4 sessions of yevoy that she has just finished 4 weeks ago. Don’t think yervoy is working. Still we have to wait and see what professor Gore from Royal Marsden has to say. Hopefully the appointment will be next week.
Regarding NHS not covering the cost of Braf/ Mek it’s a problem however we have a local fund that maybe we can use if these pills are prescribed. One way or an other we will get the money.
Can stereotactic radiation be done on the two lesions even if she already did whole brain radiation?
Wishing you health and happiness
MaggieApril 9, 2014 at 1:41 pm #64013
I will look into this reimbursement issue. I think it is related to the trial findings just out.
Here is what I learned from a good source at GSK:
In the UK only BRAF is approved but not MEK or the combination. GSK is waiting for the NICE decision on reimbursement for BRAF in the meantime its being reimbursed through the Cancer Drugs Fund.
For access to the combination there’s a named patient programme that the patient’s treating clinician can apply to the GSK UK medical director to see whether the patient would be eligible under the criteria of the programme.April 9, 2014 at 7:27 pm #64014
So even if not approved in combination it is still possible to access the drugs? Correct?
I noticed the lump on her lower back last Monday still I was not sure what it was since it was hard to touch. Then on Monday she was admitted in hospital and she was given steroids immeditely for her swollen brain. dr confirmed through the scans that the lump on her back is melanoma. Today after just 2 days on steroids the lump was noticably smaller.
Could it be the tumor was inflamed by yervoy and it was actually working and the steroids are taking away the inflammation that kills the tumors.
THANKS MAGGIEApril 11, 2014 at 10:04 am #64015
Hi again Catherine
Looked again at the bump on her lower back it’s the same size as before. I think it’s more wishful thinking -(
she has already taken Zelboraf but it was stopped since she developed brain tumors,
Since the combination is not approved in UK do you think the oncologist will be willing to prescribe it?
😥April 11, 2014 at 12:13 pm #64016 There is a program as I mentioned above that your doctor can ask for the combination through. I don’t know about the stereotactic after whole brain but will inquire.April 11, 2014 at 2:19 pm #64017 Hi Catherine.
Any clinical trials in uk we can try to get her in?April 12, 2014 at 12:08 am #64018
You can look at http://www.clinicaltrials.govput UK melanoma trials in the search. Check out our resources listed here for the UK (scroll down) http://melanomainternational.org/web-resources/global-resources/
If there are active brain mets she may not be eligible for any trial until they stabilize.April 14, 2014 at 5:34 am #64019
Your dedication towards helping us caregivers and patients is admirable.
I looked the clinical trials in Uk and nothing seems fit for her.
Some times I think that we should get the money and travel to America fast to get her in anti pd1 compassionate use, but I don’t know what needs to be done.
RegardsApril 14, 2014 at 11:52 am #64020
She would need to be stable with her brain mets first. Only a couple of the EAPs have opened in U.S. But they are accepting patients from other countries. I will see if I can find out more.April 14, 2014 at 4:44 pm #64021Ja26yneParticipant Hi Catherine
Do you have any updates to the EAP openings in the US?
I know abou the one in California — but any others?
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