sylyx2005
![]()
Posts:14
Two weeks after taking the clinical trial of PF299804, my husband has not shown any side effects, and the pain is slowly creeping up. We strongly suspect that he is in the placebo arm, so we saw Dr. today asking for opinions. Seems there are two possible choices:
1. Joining the BIBW2992 + Pemetrexed clinical trial (NCT01169675) or
2. Apply for compassionate drug -- BIBW2992. ( don't know how long this process will be)
Considering he has failed tarceva and alimta before, I don't know which choice could potentially be better than the other. Can the doctors here provide your insights?
Could anyone recommend a good a lung cancer oncologist in Toronto area who is knowledgeable on target therapy and cares about patients?
Forums
Reply # - July 24, 2012, 07:46 PM
Reply To: BIBW2992 or BIBW2992+Alimta?
Hello Yan, Thank you for your question. I hope your husband finds the treatment that works for him.
I've sent a request for a doctor comment. You should receive it in the next few hours.
Janine
forum moderator
Reply # - July 24, 2012, 08:53 PM
Reply To: BIBW2992 or BIBW2992+Alimta?
I'm sorry that we can't provide a recommendation about which treatment to pursue. That really falls in the range of providing direct medical advice to people who aren't our patients (which is illegal). I think it might be far more timely to pursue the clinical trial, and if she has a non-squamous NSCLC and hasn't received Alimta (pemetrexed) before, it's very reasonable to think that this agent could provide very real benefit.
Princess Margaret Hospital is a powerhouse in lung cancer, really on a global level. Dr. Frances Shepherd is pretty much in the range of royalty in the lung cancer world, and Dr. Natasha Leighl is a colleague of hers with an expertise in lung cancer, as well as a very kind person. They are such a strong program that I suspect that there are other good people there as well.
-Dr. West
Reply # - July 25, 2012, 12:25 AM
Reply To: BIBW2992 or BIBW2992+Alimta?
Dr West, I think Yan's husband has already had Alimta.
Yan, I am wondering if you could provide us with a signature? I am sorry to hear how things are going with your husband. How did he find the Alimta, when he had it before - and how well did it work for him? BIBW2993 (afatinib) has been taken by a number of people on GRACE in various combinations - with cetuximab or on its own. It seems to cause bad skin reactions in some patients. We have whole threads about it if you want more information. I wasn't aware that it was being trialled in combination with Alimta.
Maybe this just sounds like rhetoric, but I don't believe any patient ever "fails" a drug - the drug "fails" them. Best wishes to you and your husband.
Reply # - July 25, 2012, 07:46 PM
Reply To: BIBW2992 or BIBW2992+Alimta?
If it's the case that someone has already been on a treatment that is a central part of a clinical trial, usually they won't be eligible for that trial. I'd be surprised if a trial for afatinib (BIBW2992) along with Alimta allowed patients who have already received Alimta to participate.
-Dr. West
Reply # - July 26, 2012, 07:25 AM
Reply To: BIBW2992 or BIBW2992+Alimta?
Dr. West: Thanks for the information. My husband failed Alimta before. After two months of taking Alimta, cancer has spread from right to left lungs, and a few more spots found along the right pleral area. The clinical centre told me yesterday that it doesn't recruiting new patient anymore. So, I don't have any choices now. I'll try to talk to our Dr. again to see if there is any other choices.
My husband took Tarceva for 3 months. The CT scan after first month showed a slightly decrease in size for both areas. 3rd month's CT result showed that one spot was slightly increased in size and the other big spot was stable. Based on the 3rd month's CT scan result, our doctor concluded that Tarceva didn't work for him, and changed the chemo. Recently, I read this year's ASCO abstract about the benefits of re-treating EGFR-resistant patients with tarceva, I am wondering whether my husband could also benefit from taking tarceva again. My argument is: he probably will have a similar trend as those people who took tarceva >6 months, but with a shorter length of progress free rate. Does it worth to give him a second chance to take Tarceva?
If you take Tarceva first, are you allowed to take Afatinib as the next chemo?
My lesson learned from choosing clinical trial is: the previous chemo and # of chemo have big impacts on the eligibility of the clinical trials that you are qualified. My Dr. seldom mentioned clinical trial to us before, and when it is time to discuss the possibilities, we found that there is almost no choice for us to take whatever is eligible for my husband, even though he only took 3 lines of chemo before, which was a big surprise to us.
Certain spring: I have a profile, just don't know why it is not shown up in the forum.
Reply # - July 26, 2012, 07:29 AM
Reply To: BIBW2992 or BIBW2992+Alimta?
CS. updated my forum profile. Just found that I have to copy/paste my profile to forum profile. This seems a redundant feature that is unnecessary.
Reply # - July 26, 2012, 01:37 PM
Reply To: BIBW2992 or BIBW2992+Alimta?
The issue with the forum profile is a known shortcoming of the system that we're aware of but can't change.
I would say that there isn't much appeal to re-treating with Tarceva (erlotinib) if someone didn't previously show striking shrinkage or a very prolonged period of non-progression the first time they were on it. In general, the results with re-treatment are far less beneficial than the person received the first time. Therefore, if a patient experienced only minimal shrinkage for a few months and then some progression within just a few months, it's hard to be very enthusiastic about the prospects for either re-treatment with Tarceva or afatinib, which really seems to produce results not much better (I actually think not any better) than re-treatment with Tarceva.
At the present time, afatinib isn't commercially available, so use would be limited to a clinical trial setting or a compassionate use program.
-Dr. West
Reply # - July 26, 2012, 03:42 PM
Reply To: BIBW2992 or BIBW2992+Alimta?
Sign, I don't know what other possible chemo we should try for the future. Even though my husband is in stage 4, but his condition is not bad, he can walk everyday for almost 10km in total, and does some light house duties.
The Dr. recommended Afatinib as next chemo, and commented that it is no better than placebo. Is it really no other options? Doctors, What is your recommendation to a patient like my husband who is relatively healthy but failed 3-lines of chemo? Advices are really appreciated!
Reply # - July 26, 2012, 08:16 PM
Reply To: BIBW2992 or BIBW2992+Alimta?
I'm sorry, but it's just not possible for us to offer individual treatment recommendations for people who aren't our patient, particularly when we're beyond a point where we can talk about the evidence to support one approach over another.
-Dr. West
Reply # - July 27, 2012, 01:25 AM
Reply To: BIBW2992 or BIBW2992+Alimta?
Yan, we do have a number of GRACE members who are taking Afatinib and doing OK, apart from bad skin reactions. It has been suggested to me as a possible treatment when my cancer starts growing or spreading. The oncologist we consulted said it had "moderate activity at best", which to me is better than nothing.
I understand something of your frustration, and I am really sorry your husband's cancer is proving so stubborn. I hope his doctors can find a clinical trial for which he might be eligible. Best wishes.