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February 10, 2015 at 11:20 am #22357
my wife was diagnosed with stage IV in June and did exceptionally well on BRAF/MEK until late November (PET negative, partial response) and then developed resistance. New mets in her hip area (3) and later also in her brain (small but 12pcs). Pembro was started on 3/12 and she had whole brain radiation and hip radiation and she improved physically and so did her blood values. She did have multiple epileptic attacks since mid Jan but always received until last weekend.
She has severe speech issues now and a New MRI revealed several mets have grown significantly and that brain sections are shifting.
Too many large mets to operate, too soon after WBR for Gamma Knife. There is some inflammation so that could be a sign of the pembro.
that seems to be the only option left wait pray and see if the Pembro (#4 last week) can act quickly…
any other advice? Reality starts to set in its just so tough as we thought we had plans B and Cs…
rickFebruary 10, 2015 at 12:25 pm #66332
I can’t imagine how you must feel facing these challenges. The brain is so complicated and as you are finding out, the medical establishment doesn’t have a lot of tools to deal with issues there. Sometimes the immunotherapy can rev up the whole body and work with the brain too. But we have few therapies that cross the blood brain barrier. Because she’s had a break from the braf/mek, they might consider going back to that to reduce the tumor burden. I’m not certain of any other measures they can take. I hope she is being kept comfortable and not experiencing pain. I also hope you are sleeping and eating and taking care of you. Keep in touch, we are all hoping things get better.February 10, 2015 at 1:27 pm #66333JupkeParticipant
First of all I want to express my sincere admiration for the way you keep fighting for every chance there is in this awful situation.
Like Catherine says the only way to directly apply some kind of containment over this situation would come from inhibitors. Given the situation that would be the best hope to stabilize the current tumor burden while waiting for a positive response from Keytruda, perhaps switch over to Opdivo or looking to get into a (panRAF?) trial.
Good luck mate,
BenFebruary 10, 2015 at 5:43 pm #66334
Thanks Catherine and Ben/palladium/jupke (?) !
(Had no time to post on melanoom forum.nl)
RickFebruary 12, 2015 at 6:53 pm #66335LesliParticipant
Sending you positive thoughts.
When the brain has edema, the symptoms (like seizures and slurred speech) are frightening. Quick recovery from the symptoms is possible, usually with the help of steroids.
I have seen conflicting information about the threat that steroids pose on immunotherapies’ effectiveness. And often its important to treat what is most critical. If she is suffering from inflammation in the brain, steroids could bring her relief and protect the brain.
Thinking of you all and wishing you the very best. LeslieFebruary 26, 2015 at 1:19 pm #66336
So here we are… two weeks after the gave my wife “days to live” and send her home for palliative care. Back home she sleeps better, pain is barely present at 15mg morphine IV per 24hrs, is eating more and more, managed to go out and about in the wheelchair and take showers using a chair. She had new blood work done and it looks pretty OK actually: LDH is still a bit high but much lower than it has been for example.
Next Wednesday our onc will decide whether she’s fit enough for Pembro infusion #5.
Strange days, the rollercoaster ride of the past months is now taking place on a daily basis. Some days I feel it’s time to kiss her goodbye, on others there is hope … even feels scary to have hope. Hope for what? A few more weeks? Magical recovery towards NED or time for new treatments… Taking it day by day now…February 26, 2015 at 3:00 pm #66337MathewRParticipant
Rick, thanks for keeping us up to date. I’ve been thinking about you and your wife recently having just started pembro myself. One day at a time is a good philosophy.February 26, 2015 at 4:17 pm #66338 Rick,
I was thinking about you and your wife today and so happy you provided an update. Sometimes home is a more relaxing place to be, that’s for sure, and with less stress there is less pain. I hope your wife continues to be feeling better at home and that you enjoy the good moments you have. No one knows with this disease the outcome for certain. Stay hopeful and in the moment. We’re always here to support you!March 10, 2015 at 3:11 pm #66339
Just stopping by to share the latest on my wife’s situation…
She’s been doing better every day since she left the hospital and was given “days” to live. This is probably due to our re-challenge with the BRAF/MEK combo after a drug holiday of only (!) 2 months.
Last Wednesday her blood was great given the circumstances: hemoglobine back to 12.7, LDH down from 1600 to 900 (still above the top end of the healthy bandwidth which is 650), lymphecytes at a good level, red & white blood cells OK. So she got a shot of Xgeva and this Wednesday she’ll get an MRI and then the 5th Pembro infusion.
Given where she’s come from, in terms of a MRI that scared everyone and the subsequent decision to move into palliative care, our oncologist called it “miraculous” and the blood results “encouraging”. We’re not getting ahead of ourselves but given we were saying goodbye a few weeks ago and now my wife’s walking outside (with a push cart / rollator) and reading books it’s quite a difference indeed. She’s also completely off morphine, haldol, dormicum and aacidexam/dexamethasone!
We’re continuing with immunotherapy in addition to the BRAF/MEK combo. Side effects are unknown but so far non-existent. Our oncologist said he has people in a trial that has a longer run on the BRAF/MEK combo after the drug holiday, which is contrary to logic – but hey, it gives a bit of hope and time for the Keytruda to finally kick in…
Keeping faith, wish you the same!
RickMarch 10, 2015 at 7:37 pm #66340MathewRParticipant
Rick, thanks for sharing your encouraging news.March 10, 2015 at 7:41 pm #66341MikersParticipant Hey, Rick, it’s so much relief to read your post with positive attitude. I really much hope and pray you will be the guy who will post extremely positive results in a nearest future. Actually that was also my silent suggestion to return to combo since it is the only superfast way to get therapy results.March 10, 2015 at 8:22 pm #66342ThomvdvParticipant heading in the good direction! keep it up!March 12, 2015 at 1:33 am #66343LesliParticipant Rick,
SO good to learn of your update.
You have given us all something to think about. I don’t know of any research interests combining PD-1 with Braf-Mek, but your experience raises eyebrows.
Best wishes to you and your family.
LeslieMarch 12, 2015 at 2:24 pm #66344
So happy to hear the positive news. I hope it continues and please don’t forget about taking care of you, too.March 12, 2015 at 3:17 pm #66345
Thanks for all the great support here!
My wife had a follow up MRI of her brain yesterday. First was on 15/1 (day after grand mal seizure and discovery of brain mets), the second on 7/2 (after 3 more seizures and they gave her days to live after all tumors had grown and WBRT had apparently failed).
The onc called it “miraculous” last week and “spectacular” this week that my wife managed to recover from the situation she was in on 7/2 (and basically make it to the appointment). Even yesterday he sighed when he reviewed that old scan. BUT on the latest scan some tumors have significantly decreased, there are no new tumors and most of the edema is gone. There is some bleeding but mostly due to melanoma tumors (apprently a tricky kind of tumor vs other cancer – with loads of veins) bursting due to inflammation.
So it seems that the re-challenge of BRAF/MEK (after only 2 months of drug holiday) worked or that finally Pembro is starting to work. Either way we’ll take this result and she had her 5th Pembro infusion yesterday. Full body PET CT in 3 weeks and then either the 6th Pembro or possible a short switch to Ipi.
Will keep you posted.
Oh, LESLIE – I think our situation indeed gives more evidence to the ‘drug holiday’ idea (typically 3 months+ but in our case only 2 months), supports that brain mets can be treated with BRAF/MEK and/or PD1 and finally that BRAF/MEK and immunotherapy could be combined with success and so far with zero side effects. Our onc did want to reduce the MEK dose as apparently there are some studies (links anyone?) on PD1 and BRAF but MEK apparently is more tricky.
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