Well they kept me off the trial drugs for 2.5 weeks while we got protein, potassium and magnesium back under control. Plus I am now on clexane for the next few months as we deal with the blood clots. Significant pain in ribs, (cant bend down, stoop etc etc) which I am relieved to read is most likely associated with the blood clots rather than the cancer.
But am delighted trial doctors have allowed me to recommence. Next scan in 4 weeks and as we know, on clinical trials we tend to live in 6 week blocks!
Good luck, Gail!
Dr. Howard (Jack) West
Associate Clinical Professor
City of Hope Cancer Center
Founder & President
Global Resource for Advancing
It's great to hear that you're back on the trial. Good luck with everything Gail,
Hi Gail, g'day to you. Happy to hear the most important item is stable. You are such a warrior from Australia. Amazed by your stride in dealing with all the challenges and undertaking of those rugged trips. Best wishes to you.
Hi, Gail, so happy to hear that your situation is stable, good luck!
Blood clot usually cause swollen and pain in legs, I didn't know it could cause pain in ribs as well. Does doctor explain to u why blood clot could cause rib pain? Do you only feel pain at one specific spot or pain in an area or something else? Thanks.
Hi Gail really great to hear you are stable... somehow I missed that posting
keep up with those protein shakes and chuck in a couple of bananas :0)
best wishes lesley
Going things are still stable, labs and all, and that the clots and associated pain is controlled. How are the side effects treating you? Is spring in full bloom now?
Oops, that first word should be "Hoping". Phone posting from airport :(
November scans show thickening/ greater density in main tumour. Dr borderline on taking me off trial but given I want to stay on he has allowed another 6 weeks. I figure then even if there is progress the trial drugs may be applying a brake on it. And that has to be good.
I had nearly 3 weeks off after the problems I had post Burma holiday so going back on has given the side effects a new lease of life. But they all fall in to the category of minor irritations.
Hanging out for CO 1686 which should hit our shores for trial in March 2013. Assuming I make it that far it will be over 4 years since diagnosis.
And have more holidays booked so no time for falling off my perch!
Hi Gail thats really good he is giving you 6 weeks more as you just never know !
I had a look for CO1686 sounds promising and certainly worth a go also I found this very interesting PDF about CO1686
best wishes Lesley
Gail: Thanks so much for the update. . .and I'm glad the doc has agreed to keep you on the trial for another 6 weeks, at least. My best wishes remain with you. . .
And Lesley: thanks for the PDF. Very interesting indeed. I will need to look into this. . .
Hi Laya this may give info on trials in USA
best wishes Lesley
link got split have changed to tiny url
That link didn't work for me. Try this one:
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)
Dr. Goldman runs the CO-1686 trial at UCLA, and Dr. Camidge has a waiting list at U of CO (or at least it filled up right away when he opened the trial end of July). I think those are the locations on the West coast (US). Additionally, a fresh biopsy is required.
We see my Mom's Onc. on Monday. I definitely will bring this up, although I think that my Mom's recent brain met issues (which were gamma knifed) probably disqualify her.
Thanks for the info, guys. . .
Laya, successfully treated brain mets that aren't symptomatic don't seem to be a barrier to that trial, according to its exclusion criteria, as long as her overall functional status is still good.
Gail, just hoping for an update on how you are doing.
Hi and thanks for asking. I am half way through my 6 week extension and have an appointment in a couple of days. I am awash with minor infections, particularly fingers and toes, and I don't seem to heal at all. I have a head wound from an accident nearly 6 weeks ago and it's just not getting better. Rib pain is worse, at the level of constant discomfort.
So lots of minor things, but nothing major. Like all of us I can't help but wonder if this is the beginning of a downhill spiral.
I 'celebrate' 4 years since diagnosis at the end of January next year, so figure I have nothing to complain about! At this stage I have a holiday in each of the first 4 months of next year so don't have time to fall off my perch yet!
Hi Gail good to see you Can I suggest warm or even cold salt water soak fingers and feet in this as many times a day as you can I keep a bowl by the computer ;0)
Glad to hear from you, Gail. Have you found anything that helps with the rib pain?
cosmo72, I am with you on the salt water, though I confine the ablutions to the bathroom! It is an absolute trial. After a year of toe infections I had surgery on my toenails, which seems to have worked (crossing as- yet-uninfected fingers). It is nice being able to wear more than one pair of shoes again.
Not enough holidays here .... we are moving house instead :)
Great to hear from you! Sorry to learn of your infections and increasing pain, but I am very happy to learn of your upcoming survival milestone. I look forward to updates of both your treatments and your holidays!
Well I saw dr today and he said I was a train wreck waiting to happen. So off the trial drugs for at least 2 weeks. This will be reviewed after the next scan, which we expect to continue its tendency towards progression, which will mean I will be permanently off the trial. Managed nearly 10 months. He also took swab of non healing wounds to see if there are some nasty bugs adding to my woes.
Whilst I wanted to do these next 3 weeks I suspect I am secretly relieved as feeling crap is taking it's toll.
Assuming I am off the trial I will start on alimta whilst we await the CO 1686 trial to start in Australia, hopefully by March next year.
That's not very nice (the train wreck bit) - is that Australian candour? Goodness, and I thought my doctors were blunt! It seems to me you've done amazingly well to stay on the trial for so long, given all the side-effects you've had to put up with. Thank you for being part of the trial and helping to improve the state of our knowledge about treatments for lung cancer!
Have you already had Alimta or is this a new one for you?
I'm sorry about coming off study, though it wouldn't surprise me that you might well feel better off treatment for a bit.
Good luck on Alimta and then the CO 1686 trial!
I hope you can still enjoy your travels in between the changes. I'm pretty tired of my non-healing scalp and feet too. By the way, one of my U of COlorado docs (Dr. Andrew Weickart) did his studies at Peter Mac and is a good friend of Dr. Solomon - speaks vey highly of him.
If you're on to Alimta, it might be a huge relief! I was on it for two years and except for the Decadron puffiness, my life was very close to normal. (I was on Tarceva concurrently, so tats saying something!)
Best wishes for a fun summer and holiday season!
Thanks so much for the update. . .and sorry about all the side-effects you've been having. A 10-month success on a trial is not too shabby...and I hope/wish/pray that Alimta will be a piece of cake for you after your much needed treatment break (lets get those toes and fingers and head nice and healed).
I think of you often. . .and hope that you continue to do well. . .
Thank you all for your comments and support. Certain Spring - alimta will be a new chemo for me. I think dr is still deciding whether to combine it with afatinib, but I suspect he will decide against. From my reading alimta is farly well tolerated and as dr says, maybe my hair will finally grow back!
dr West - I have now been off the drugs for 6 days and am starting to feel better infections continue and we suspect head one is probably a staph infection - we are waiting for swab results. Sometimes I think we all underestimate the toll all the medication takes on us. It just becomes the new normal.
Jazz - lovely as always to hear from you. Ben is a fantastic dr and I am hoping I can stay with him when I come off the trial. My previous oncologist was also very good, and I keep being amazed at the efforts the drs make to keep me alive! Why did you take decadron on whilst on alimta?
Laya - given all you have on your plate at the moment I am amazed and in awe at the amount of time and support you devote to others. Hugs to you!
Well, after 10 months, and as expected, I am off the trial. Had scans and dr review today. Scans showed continued gradual progression and drs view is that trial medication has done all it can. So I start chemo in the new year - carboplatin and pemetrexed (Alimta).
Of more concern is the sharp increase in pain - which I haven't really had before and isn't really explained by scan results. But regardless, dr happy to prescribe pain management medication so hopefully I can get it under control. The fear is that I am just being a sook - but I guess I'll never know as there is no objective way of measuring! Well, none that I am prepared to participate in anyway!
So this will be the end of this thread. thanks for all the support and suggestions along the way. As always they have been very much appreciated.
Happy festive season to all.
Please start a new thread! Sorry about the pain. It's not much fun. Where is it?
When you feel inclined, would you give us your opinion of the trial overall? I asked Jazz the same question re her afatinib/cetuximab experience. Might be useful for others in the future. Your side-effects have sounded so rough - was it the PF-00299804 that caused those?
Rooting for you.
Is your ? About being a sook about the meaning? Or whether I am one? I certainly feel like I should've ben able to cope better, but I'm getting over it! Figure if I am in pain the whys and wherefores dont really matter. What am I trying to prove anyway? And to who?
In terms of the trial I am glad I did it. I got very good and responsive support from both the drug company and my doctor. The side effects were pretty rough and I wonder sometimes if I am not proactive enough in managing them. Both drugs, Dacomitinib and crizotinib were very toxic for me. In fact my dr had anticipated this after my response to tarceva and was reluctant initially to have me on the trial. But I had no hesitation, and I have no regrets. Clinical trials are a necessary part of the development of treatment options and I am more than happy to participate. I guess I have no way of knowing where I would be without the 2 trials I have done. maybe my quality of life would have been better overall. But equally, maybe I would no longer be here. and even when the side effects were at their worst I could always see a light at the end of the tunnel - although maybe that was the train heading towards me!
We are looking at the new trial of CO 1686 coming to Australia next year. When it gets here I will be standing at the front of the queue. I dont want to live at all costs and quality of life is important to me, but there have been so many good times that I can (nearly) overlook the bad times.
And there will be no rooting according to the Australian definition - somewhere along the line sex got sidelined!
you are not a sook ! anything but ...Hope it does it mean something else in USA
everyone has differing pain levels and tolerances to drugs and you have had a lot of stuff pumped into your body
I have a very high pain tolerance but I think having this bloody cancer I do pick up on slight changes in the body and new sorenesses always make you wonder if it has spread.
But I do reckon the reason for any pain is worth finding out what the cause is
I think compared to many folk I have read about , you have coped extremely well and retained your sense of humor and are very positive
We follow your posts with interest as it may be us next on any of those trial or drugs
In fact I feel quite positive knowing that the trial of CO1686 http://www.celgene.com/pdfs/2011_1116_EORTC_Clovis-Avila.pdf will be starting in March here in Oz,
Fantastic for you to get on the trial as it will be years before its avail to all and then approved for PBS and again will look forward to your reports as it may be my next port of call and it certainly sounds good from what I have read on it and am looking forward to hear first hand from you how it goes
Can Ben get you on the trial before March on Compassionate grounds ?
Wishing you all the very best for 2013 xx Lesley
OK, lots of intercontinental confusion here.
I shall cheer not root. And I was seeking a translation of "sook" for non-Australians and non-Americans. I feel it is something like a wuss?
Gail, thank you for the retrospective on the trial. I hope you have some good time to recover from the side-effects.
A very happy Christmas to you both.