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October 31, 2014 at 4:18 pm #22224JonathanParticipant
This is a short update on my situation with Keytruda after my 9th infusion (began in early May on Expanded Access, now switched to commercial coverage). I’ve had 2 CT/MRI scan sets since then, the last yesterday. I also had extensive abdominal surgery in late June because of multiple small intestine blockages (hospitalized for 2 months prior to that).
The basic message is the drug is working quite well, though slowly. I had marked shrinkage showing up in the first scan in a number of tumors, and stability elsewhere – that was in July, 9 weeks ago (there were also 2 small brain tumors identified first in January that were subsequently handled with gamma knife radiation in September – very slow growth, possibly influenced by the Keytruda – another story). The latest report suggests a slow-down in response, with a few additional tumors shrinking noticeably, but most now stable. No new tumors evident anywhere. My oncologist says this represents a clear ongoing response, and I “just have to be patient” for further positive developments. I also have had no noticeable side-effects of any sort, and have continued to recover from the surgery and long hospitalization. In fact, it’s pretty clear I haven’t felt this good in a number of years. So if this state can continue, I’ll be more than happy (euphoric is more like it).
I think patients should be encouraged to get anti-PD1 drugs as a first priority whenever they can. Of course, the Ipi/anti-PD1 combo, now in Expanded Access, has the very highest response rates going (over 80% remission after 2 years and counting), but so far that’s only available at 4 locations. FDA approval for that can’t be far down the line, as well.
JonathanOctober 31, 2014 at 5:08 pm #65760RJoeyBParticipantJonathan wrote:
In fact, it’s pretty clear I haven’t felt this good in a number of years. So if this state can continue, I’ll be more than happy (euphoric is more like it).
Wow, after everything you’ve been through, what a testimony! Congratulations and I so hope it continues.
JoeNovember 2, 2014 at 7:21 am #65761lak1Participant
Good to hear from you – I held my breath with the news of your surgeries.
I too just managed by the skin of my teeth to get on the UK expanded access for Keytruda. The doctors are fast filling their quotas and mine is over filled but sofar Merk have not turned him down.
I was sick as a dog following one dose of Ipi in May- but did have a response. By the time I was well and off steroids i was progressing again August. Merk reorganised its approval service in UK and vacations led to me not starting anti pd1 till sept. A week later liver mri revealed 10 liver mets. I have OM and it loves the liver- I opted to add Sirtex in as well . So I had that the 9 oct the week before my third dose. Next week I get dose 4.
No major side effects although I do get tired and joint pains especially mid cycle. But I have had 3 doses and not been hospitalised – that never happened with ipi.
My subcutaneous lesions ache and are tender. So we will have to see. I have developed spinal mets any knowledge whether Keytruda is effective in bone mets?
LesleyNovember 2, 2014 at 12:58 pm #65762Catherine PooleKeymaster
I’m happy to hear you found access to PD1 in UK. I find that getting the information about global therapies access to be difficult and expressing opinions that make a difference even harder. For spinal mets, I’ve often heard that radiation works best. I would discuss with your doctor. Sounds good so far, happy to hear you have not had any bad side effects. Keep in touch.November 2, 2014 at 9:36 pm #65763StevenParticipant
So happy to hear from you, and that you are doing well!!!!
StevenNovember 3, 2014 at 6:34 am #65764mmmmParticipant
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