Is there hope with a clinical trial after all else fails? - 1256391

lynnrich
Posts:10

What an awful week. On this past Monday, we went to see the oncologist because my husband had just had his 3rd treatment with Carboplatin/Taxol/Avastin after 2 previous with Carboplatin & Alimta. He has stage 4 adenocarcinoma of the lung with mets to the bone. We changed to the Carbo/Taxol/Avastin after two treatments because the primary tumor in the lung had grown. ......Long story short we were admitted to hospital for anemia, urinary retention and he had what is called disseminated intravascular coagulation, this is where you body bleeds and clots simultaneously. He now has blood clots in 3 of 4 extremities and his lungs. We had an IVC filter placed and he came home with a urinary catheter, which I hope he will be able to urinate on his own, when it's removed on monday....still not sure what happened to the bladder? ...The doctor said he has 6-9 months without treatment as he had a bone scan and the cancer is in his leg bones, ribs, shoulders and back. The doctor said he had a veristrat test and would maybe be a candidate for Tarceva a pill and that may give him a year or two..........This is the worst thing i have ever been through in my entire life. My faith is shaken but not shattered, ....Is it common for a treatment and a diagnosis to go so terribly wrong? Is this from the treatment or the disease? ...or would anyone even know? How do you find out about clinical trials? Is it too late? Sorry, I'm just saddened and terribly hurt

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Reply # - May 11, 2013, 10:05 PM

Dr West
Posts: 4735

I suspect that these complications are more likely to be from the underlying cancer than from the treatment, though Avastin (bevacizumab) can in and of itself lead to problems with bleeding and clotting. And yes, unfortunately, it's all too common for good treatments to be disappointingly ineffective and sometimes even backfire and only add problems.

Your oncologist should be able to help point you in the direction of any potential clinical trials or to someone in the region who may have clinical trial options to offer.

Finally, though I am very reluctant to mention it, I am very aware of the general stats for advanced lung cancer and the challenges when a cancer is growing through good treatment, and these lead me to think that the numbers you're tossing out are actually on the high side (though I'm sure they don't seem that way to you). I really hate to discuss prognosis for someone I've never met and for whom I don't have details, but everything you're relaying leads me to be concerned that your oncologist is giving you numbers that just don't jibe with what I'd expect to hear. Though I really hate to be the bearer of bad news, I hate even more to have you be woefully unprepared for the future, and I fear that giving a time line that isn't accurate doesn't serve people well at all when they need to plan and prepare for what's to come. That said, I sincerely hope I'm wrong: I don't have all of the information, so your doctor may know better, but this may be all the more reason to get another opinion. In addition to discussing potential subsequent treatment options, they may be able to provide a reasonably accurate assessment of what to expect for the future.

Good luck.

-Dr. West

Reply # - May 12, 2013, 06:19 AM

certain spring
Posts: 762

I am very sorry to hear that you and your husband have been having such a horrible time. I can imagine how frightening and chaotic it must feel.
Lung cancer is a cruel disease that can move fast once it has spread. Chemotherapy works well for some people, but not at all for others, and it too can be very tough in its impact on the body (doing damage is, of course, the whole point). Doctors sometimes implement a "washout" period between treatments, so you could ask for that if you wanted. However, Tarceva is a pill as you say, and although the side-effects can be difficult to cope with, it is unlikely to bring your husband as many problems as he experienced with this particular chemotherapy regime.
It sounds as if you are very shocked, and I wonder if you were properly briefed at the outset on what to expect. Dr West's advice to question your doctor further or get a second opinion seems very sound. In particular, I hope your doctor has discussed with you the dangers of blood clots - not to frighten you, but to keep you properly informed.
I wish better times for you both, and am linking to your previous thread so that people can understand what's been going on:
http://cancergrace.org/topic/carboplatintaxolavastin-combo

Reply # - May 12, 2013, 01:03 PM

certain spring
Posts: 762

That's a fantastic attitude. It's the one my husband took when I was diagnosed, and it has helped me enormously. I have no doubt that you are doing the same for your husband. Very best.
PS - if you do want to go for a second opinion, Dr Weiss wrote a very useful guide:
http://cancergrace.org/cancer-101/2011/11/13/an-insider%E2%80%99s-guide…

Reply # - May 12, 2013, 02:14 PM

carrigallen
Posts: 194

I'm sorry, this sounds like a tough situation right now. It is not uncommon for advanced adenocarcinoma to provoke problems with clotting or bleeding.

I suggest making sure that his bone mets are not causing significant pain - for example, a hip or back pain often be fixed with 1 -3 days of radiation. This does not directly stop the cancer, but to be honest, the kind of resistant cancer you describe can be very difficult to stop. I also agree with Dr West, that the numbers you mention do not seem to fit the outlined situation. Despite toxicity and expense, our cancer treatments still only work for a proportion of people. That is why I would begin by making sure his pain is well-controlled first, before even discussing the pros/cons of any additional systemic cancer treatments.
Best wishes for his recovery, and God bless.

Reply # - May 12, 2013, 05:26 PM

Dr West
Posts: 4735

We aren't legally permitted to answer "should" questions, which puts our answers in the range of medical advice for people who aren't our patients.

I don't see any reason not to do Tarceva (erlotinib) if that's the leading option, and it sounds like this may be the case -- however, it's worth discussing the pros and cons with his doctor.

Good luck.

-Dr. West

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