My apologies for being absent for so long. In all honesty, I just haven't known what to say. I told Dr. P. today that every time I think of friends here - going on hospice, or still struggling to find a drug regimen that is both tolerable and effective - I get downright angry. I'm not angry at God, I am angry at the medical profession, and the whole way that clinical trials are handled. There is still such an overall lack of communication that makes it difficult for people to find a trial that fits, in a time window that is appropriate for the trial cohort and the patient's medical need.
After I finally calmed down some, this is (more or less) my understanding:
The results for the single-drug study of MPDL3280A will be announced next week.
40% of patients either had shrinkage or stability.
At this time, there are no plans for additional studies with the single drug for CRC patients.
The study I am on is still looking for first-line patients for the study arm with MPDL3280A/FOLFOX/Avastin.
AT this time, the MPDL3280A/Avastin arm is not enrolling CRC patients, but Dr. P. says that is subject to change on a monthly basis, and he expects to enroll some by this summer. He stills pushes how important it is for patients to look at trials sooner, rather than later when their symptoms and side effects from other treatments may be too bad. He said that making an appointment and seeing him for a consult or second opinion is the best way to get on his radar and be in line when spots open up on trials. I write all this with a bit of caution, because I feel that when I've written about the trial before, I've offered some false hope, but I'm writing as closely as I can to what the doc said, so I am praying this actually is an option for someone.
As for me, I just had round 14 out of 16 today. We had to leave out the Avastin again because of high proteinuria, but Dr. P. tells me that with the half-life of Avastin in the system, I am still getting some benefit out of it. The side effects have been minimal - the usual Avastin sniffles and occasional nosebleed, plus fatigue and dry skin from the study drug. The rash that I've had a little bit off an on for the last few months blossomed over the last few weeks into hives around the back and sides of my neck and slightly on my forearms. It turns out, though, that there is a strong possibility that it is not an immune system reaction to the study drug, but phototoxic dermatitis from the HCTZ I have taken for years for fluid/BP, hence the limitation to just areas of sun exposure. I am so very thankful that I did not go to the pool this weekend, or I would have been in for total misery if the HCTZ theory is right. Have stopped that medicine in the hopes that it will be out of my system in time for a trip to the beach late June.
The scan 3 weeks ago showed that the lung nodules are still stable or perhaps have had some slight shrinkage. For me, 15 months off of chemo, this is nothing short of miraculous. Saturday made seven years on the cancer journey. It has not been easy, but my friends here have been a blessing along the way.
With prayers for all,
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again