Even if Kaiser doesn't care where I go for my clinical trials, it would be difficult for me to go somewhere too far. If I have to fly over to the East coast frequently, and stay a couple days at a time, it would definitely be a barrier to get to the clinical trial. I could do it if it's a short flight or ride, but 5 hours of flight either way is a bit much, especially when you don't just go once a month, but more frequent than that. I admire those of you who can tough it out. Maybe the furthest I would go is to Univ of Colorado. That's why video or virtual visits for clinical trial would be so valuable - that would be a game changer.
Hope I'm not interrupting this discussion. I just wanted to respond to Blue Skies' original update on Debra's thread:
Blue Skies, I am so glad to see you back - I have been fretting about you and thought there might be something amiss. How tough for you to hear about the brain mets, minuscule though they sound. Your attitude is magnificent and puts me to shame. However it did make me laugh to hear of the cupboard-clearing activity. (I'm trying to think of an animal that is the opposite of a squirrel, ie throws everything out?) Glad you have trial options, are feeling well and have a good team looking after you.
One last response here (being sensitive to having hijacked Debra's thread)..
Yes, Certain Spring, I've been thinking of you this past week as I've been up all night, whirling around the basement sorting, and pitching and cleaning and fighting the entropy that has dominated the last 10 years as my children grew and we became increasingly involved in managing my husband's mother's household and affairs. It's a two week course of drugs, so the project will come to a screeching halt in another week or so as I finally taper off.
I am always surprised when you comment that something "puts you to shame." You are so incredibly resilient and scrappy and brave...much braver than I am. When I reread your profile, which I do from time to time, I am always struck by the intensity of your experience and emboldened to believe that I can be as strong and resilient and amazing as you continue to be.
I hope that Wonderful Webmaster Mark will be able to find a way to restore personal messaging functionality, so we can avoid creating such meandering threads just to keep up with one another.
Keeping you in my thoughts, Debra! Got my fingers crossed. And my happy dance shoes have been shined and placed in a lovely clear box in my closet where I can find them easily and pull them out when I need them!
Yes, I agree. I would say that 4 hours travel time in either direction is the breaking point (my reference being taking a bus or train from DC to NYC). As a one-day trip, it can be a 12 to 16 hour day. Even if almost all of it is sitting in a chair!
But I wouldn't discount having Kaiser investigate potential trials on your behalf that might be geographically undesirable if they might have a real impact on the course of your illness. So much of the consultation and assessment occurs BEFORE you travel to meet with the study team, and you would not have to worry that there was an opportunity missed that in hindsight you might have pursued.
I totally agree with Blue Skies' succinct and well-put comment above. Have Kaiser investigate ALL potential trials, regardless of location, and whittle down choices from that.
My first oncologist also told me I was limited to Stanford, UCSF, and UCD - but don't believe that. The oncologist who got me into Colorado submitted it, and it's a Phase Ib trial. It's a matter of your physician going up to bat for you with his chief, who has to approve the requests. Your physician is also the one who has to submit requests for travel expenses and testing to be covered. It's possible but you have to convince your onc that it's THE thing to do and you want to do it. I was very fortunate to have a progressive doctor (with whom I'm still in touch, even though he's in private practice in SoCal).
I just returned from an overnighter in Colorado and it's incredibly tiring. But I'd do it again, given the choice. I haven't felt this good since 2011, and feeling almost normal? - Priceless! Even with only one lung.
YAY, Jazz! You go girl!
Thanks, Blue Skies, and thanks for the update on Jing.
As for you, my dear... you have an astounding attitude! I'm so impressed by your energy and good cheer. Please keep us posted on your treatment progress. I hope all those evil mets are zapped to oblivion so you can take your shoes out and do a dance for yourself! Cheers and keeping my fingers crossed for you!
Blue skies: Thanks for giving us an update for Jing. She has been cared by a good team. Hope that she would overcome her difficulties soon. Thanks, AB
ssflxl, Have you ever considered the Trial of Ariad Oral AP26113 Inhibitor of ALK and EGFR (
http://www.clinicaltrials.gov/ct2/show/NCT01449461?term=Ariad+AP26113&ra...)? It has a location in San Diego. Good luck. AB
A little bird told me that AP26113, while having the distinction of inhibiting both ALK and EGFR, is far more effective on ALK. The belief is that the dose required to inhibit EGFR is far greater than for ALK, and this would result in possibly intolerable side effects.
But I suppose that's what the trial is for...
BTW, Blue Skies - I just learned that the Tarceva + BMS (anti-PD1) trial at Johns Hopkins filled up yesterday morning!! They opened it and accrued enrollment that fast. I have no details, do you?
quick FYI, This is the community thread where we are encouraged to meander through one anothers' experiences. I personally like this mode of communication however much of an eavesdropper I just revealed myself as being. :-?
The stream of consciousness in these open conversations creates...something unexpected...soothing in this world of horrific circumstance. I don't know what I'm trying to say but I'm greatly comforted in this group dynamic.
P.S. we are experiencing a buggie situation with the timed out warning. It's happened before and Mark fixed it pretty quickly. So there's no reason to think he can't again. Until then, copy your post before submitting and if you get the warning hit the back button and submit again.
I did not know that one was opening up there. Dr. Spigel had said, when he mentioned the one in Memphis to me, that they fill up quickly. I'm not sure what the qualifying patient characteristics are.
Just wanted to thank blue skies for the Jing update. . .and I'm so sorry to read about both blue skies' and Jing's cancer progression. I like the plans set in place for both ladies' treatments. . .and wish them all the luck in the world. Blue skies: if you speak to Jing anytime soon, please give her my love and let her know that she remains very close to my heart.
Also, thanks everyone for the trial information - - so much good stuff. . .
Here is the clinicaltrials.gov info for the Phase 1 study of anti-PD1 drug BMS936558 with other agents:
Note it's Phase 1 and that candidates have to be chemo-naive, except Arm D (the Avastin arm), which starts the BMS drug after first line chemo doublet. This is baffling, but I assume this is the trial that filled up right away. Will try to find more info. but it's definitely not for us "old-timers" (and heavily pre-treated).
It says UCLA, Johns Hopkins, MSKCC, Moffitt, and Fox Chase are recruiting, and that Colorado, Yale, and North Carolina will be recruiting. The Canadian sites have either completed their study or are active and not recruiting, so hopefully there will be data on that soon (ESMO?).
About the Trial of Ariad Oral AP26113 Inhibitor of ALK and EGFR. The only information that I have is from an abstract http://cancerres.aacrjournals.org/cgi/content/short/72/8_MeetingAbstract...,. There it mentioned “orally efficacious doses in mice against activated and T790M-mutant EGFR are similar to those active against crizotinib-resistant ALK variants”. Similar statement can also be found from a slit presentation entitled AP26113, a potent ALK inhibitor, is also active against EGFR T790M in mouse models of NCSLC. It would be good to have more information about this trial.
Thanks for this great discussion/advice. That's why this site is so great - it's not just the doctors. I am trying to put together the different trials I can get onto when I become resistant to Tarceva - of course, the ones in CA is on top of the list. So any info all of you have would be greatly appreciated. I admire those of you who travel long distances for trials, knowing that there is a chance the med won't work for you. The anti-PD1 trial is interesting and I could certainly qualify when I become resistant since I have not had any chemo before/yet!!! Going down to So. Cal isn't a problem for me in this case.
Dear Friends at Grace
Today I lost my wonderful Philip but without being morbid I would like to share the peace and comfort I had at the end even though neither of us has any religious belief.I was able to hold him and ask him to go to peace.I described a river journey with the sun shining and blue skies with our family and friends standing by the river saying goodbyes and our grandchild shouting bye Grandad.He became completely at peace and I told him to give in and float away .His breathing slowed peacefully and he sailed .It was a beautiful moment.You have been with me on this difficult journey and I thank you all.
Christine, I am so sorry for your loss. However, I'm glad that Philippe passed away so peacefully, with you by his side.
Please accept my deepest condolences,
Dear Christine, thank you for so generously sharing your experience with us and for giving us all so much support throughout your time here. And thank you for sharing the fact that you and Philip were able to make his transition so peaceful and beautiful. None of us could hope for a better circumstance or for the presence of a more loving companion. I will quote an old friend here... Aloha, Philip.
Oh Christine. . .I'm so very sorry and heartbroken over Philip's passing. My heart aches for you and the rest of your family. Please accept my deepest condolences and know that I carry the both of you very close. And, thank you for sharing the peacefulness of Philip's passing with the rest of us. Oh, how brave you are. . .how very very brave. . .and kind. . .and loving. . .
I'm so sorry. . .
How amazing and strong you are to have guided your Phillip to such comfort and peace. Your moment was rare and beautiful and dare I say it, the happiest ending I could hope for myself or a loved one. Thank you for sharing with us.
I'll admit I was a bit in shock, as I'd recently read about his appetite then being rushed to the hospital. Please accept my sincerest condolences.
I am so so sorry, Christine. I wish you both peace.
Visit my bio here.
I'm so sorry to hear that, though you are so wonderfully resilient. I'm comforted that you are remembering so much good of your time together.
We're thinking of you.
Dr. Howard (Jack) West
Associate Clinical Professor
City of Hope Cancer Center
Founder & President
Global Resource for Advancing
What a loss to you and your family, Christine. I am so sorry to hear this. I admire you for having always been realistic about what was coming, and for making the most of the time you and Philip had left together. It is lovely to hear that you were with him right until the end. Wishing you strength to deal with what follows,
My heart goes out to you, Christine. I can only hope that when the time comes for me, that my family and I will have such a comforting and peaceful transition.
I am so sorry, Christine. May all the good memories comfort you now.
I am so sorry to hear of Philip's passing, but it was good that it was such a beautiful moment. I wish you peace and strength moving forward.
<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>
Thank you all so much for your lovely words of comfort.I am not brave just still in love after 42 years.Also from Yorkshire.I absolutely will not allow this filthy disease to rob me or Philip .
One week of despair.
Two years of hope despite.
42 years of tomorrows
Eternity of love
Dear Christine, How wonderful a gift you were able to give Philip and you. I know it helped him leave and I know it will give you solace in return. I'm so sorry you've lost him.
I think that is a very healthy attitude. No matter how it may seem at the moment, life will continue and perhaps in ways you could never anticipate now. And I speak from experience, as my signature below attests.
I wish you many happy tomorrows.
I am so very sorry you and your family had to go through this and I hope that when it's time for my Mom, it goes as peaceful as your Phillip.
God Bless you and your family during this time.
Just wanted to say to Christine that I have been thinking of you.
Time for some updates, I feel. I have been thinking of lots of people here.
Janine - I too missed the spot where you mention going on an adventure. Have a great time, the aspens have turned - aren't they incredible? Are you canoeing, kayaking, rafting...?
She's away now, out of internet range, and I'm sure you're happy for her. She'll be back early this coming week, hopefully with some good stories.
9/10/12 Stable scan. Continue Tarceva 150 MG and IVIG treatments. Lungs still show bacterial infection (going on 4 years, now). Continue antibiotics 2x a week. I live in a small town and my oncologist told us I'm his only patient ever that tested positive for the EGFR mutation. I found that interesting. Re-scan on 12/3/12 Jane aka PoppyJo
That's really great news! Thanks for sharing it -- always very welcome.
I too wanted to send congratulations and hurrahs.
But I imagine the lung infection is quite tough to deal with. I find it alarming whenever I get one. Do they know what it is? Very best.
Dr. West and laya d.......Thank You
Certain Springs, the infection I have is not a common infection. It is called MAC (Mycobacterium avium Complex). I've had it since 11/08 and it took 13 months to diagnose. I was on strong antibiotics for 18 months. When my doctor felt it was time to get off the antibiotics, the ct-scan showed a spot that had doubled in size. That spot was the lung cancer. My current scans show the infection is still active, so I continue with antibiotics. MAC is a cousin of TB (but MAC is not contagious). It is difficult to get rid of and there is a high percentage of relapse. I will probably never get rid of it. I actually did not know I had MAC until I coughed up blood 2x and ended up in the ER. A scan showed a nodule, then 3 months later it (the infection) was all over both lungs. Since 11/08 I have had 27 chest x-rays and 13 ct-scans of my chest. I see an infectious disease doctor for the MAC as well as an oncologist for the lung cancer.
Hope I didn't confuse you. Take care. Poppy Jo
Its been some time since I've been on GRACE. That doesn't mean I haven't thought about GRACE and its members and faculty.
I thought, initially, that I'd be able to be back here and perhaps be of some help to someone. But, in reality, the last six months have been very difficult. And I'm not at a point of being of use to anyone yet unfortunately!
But I wanted to say hi. And to say that there is always hope. And finally to say thank you, sincerely.
Take care of yourselves,
So glad to have you back. Grief can be terrible, and lonely, and paralysing. I don't actually know how anyone gets through it. But I know you will find an affectionate welcome here.
Louise, thank you for chiming in, that's very generous of you considering the circumstances.
Take good care of yourself,
Louise, I'm glad you came back. You are in my continued thoughts and prayers.
It's so nice to hear from you. I think we can all understand that you'd need time and that it's not easy. We'd love to be there for you, and if you can offer someone else a valuable perspective, so much the better.
Thinking of you.
Louise, It's very good to hear from you. I can imagine it's been a very difficult time. Like Dr. West stated we understand your absence and would appreciate any wise input you have to offer, if you feel like it.
Janine, when does D have another scan? At 3 months? (which would be soon)
My dad died today. Not of cancer, and not unexpectedly, as he was 82 and had a history of strokes. He died very suddenly, and at home, which was good as he had a terrible fear of hospitals or of going into a care home. My mother is long dead and he believed they would be reunited.
But I am flummoxed as I thought he would outlive me (his parents both lived into their 90s). Seeing him dead was a strange thing. I hope we can do our best for him in terms of the funeral - I do not feel at all equal to the task.
Good grief, CS! I am speechless :(