2 years story... adenocarcinoma stage IV - 1254946

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zeynepdilek
2 years story... adenocarcinoma stage IV - 1254946

My husband : Airline pilot, age 56, healthy... former smoker

10 May 2011
Backache...
Xray & Pet-CT & Biopsy : Lung cancer / Adenocarcinoma
Stage IV – both lungs & lymph nodes

June 2011
1- Cisplatin + Alimta + Zometa 6 round
Pet-Ct : %90 regression

Alimta ....maintenance 6 round
Pet-Ct : progression

March 2012
2- Carboplatin & Taxotere 8 rounds
Pet-Ct : regression

May 2012 - Cyberknife to lung (2 times)(because of backache)

Biopsy 2nd time / ALK positive

Xalkori 4 months
Pet Ct: Progression to some bones

September 2012 -
3- Cisplatin & Gemzar 6 round
Pet-Ct : Regression %28 ( bones gone )

4- Cisplatin & Gemzar 4 rounds
Pet-Ct: Progression & stable

19 March 2013-
5- Cisplatin & Alimta & avastin started yesterday.... No side effects...

Now I have some questions..... Is having so much chemo bad for heart, etc? As he is really not having any symptoms from cancer can we say is this treatments good for him?

He is living his normal life... Just not flying a s a pilot but travelling a lot, having walks, going out for dinners, drinking his whisky every night - and fresh lemon & pomegranate juice every morning and eating properly - a lot of vegetables and fruits, cheese, fish and red meat ( Mediterranean style as we are from Istanbul- Turkey)

Thanks for your suggestions....

Zeynep

luke
Reply To: 2 years story… adenocarcinoma stage IV

I would of course have to defer to the moderators and the doctors, but I wonder if the extended use of platinum doublet is a conscious and deliberate decision. It appears to deviate from what I understand to be the conventional practice.

catdander
Reply To: 2 years story… adenocarcinoma stage IV

Welcome Zeynep,
Of course it's absolutely horrible that your husband and you are dealing with him having stage IV nsclc. Though relatively speaking it sounds as though he is doing very well considering the treatment he's had.

I would ask the same question as Luke. This link should address our concern and questioning.
I'd forgotten how good this piece is as an intro to nsclc treatment. http://cancergrace.org/lung/2010/04/16/introduction-to-first-line-therap...

Here Dr. West explains the risks of platinum based treatments, "This standard of care is based in part on the premise that the incremental adverse effects may escalate faster than any incremental benefit for a platinum-based doublet. With cisplatin, cumulative nausea, fatigue, risk of significant kidney damage, neurotoxicity, and overall “platinum blues” tend to make treatment beyond 6 cycles infeasible and disproportionate to any potential added benefits of ongoing therapy. With carboplatin, cumulative cytopenias (low blood cell counts) and a rapidly escalating risk of a severe and potentially dangerous hypersensitivity reaction (which can also occur with ongoing cisplatin but is notorious and almost inevitable with carboplatin) make indefinite carboplatin too challenging and inadvisable." full post here, http://cancergrace.org/lung/2011/12/24/beyond-4-cycles-1st-line/

Does this help explain some of your concerns?
All best,
Janine
forum moderator

laya d.
Reply To: 2 years story… adenocarcinoma stage IV

HI zeynep:

It's nice to hear from you again. Thank you so much for the update on your husband. . .as I had been wondering how he was doing and whether or not he still was flying planes ;O) !!! Anyway. . .just wanted to say Hi!!!!

Laya

zeynepdilek
Reply To: 2 years story… adenocarcinoma stage IV

Thank you to all of you !
Thanks Janine for the information...
And Laya I am very sorry to hear about your mom....

catdander
Reply To: 2 years story… adenocarcinoma stage IV

I'm sorry I didn't recognize you zeynep. I should have said welcome back :)
And yes it's tragic for Laya and her family to lose such a young mother. Laya is so amazing, continuing to lend uplifting hands to us all.

zeynepdilek
Reply To: 2 years story… adenocarcinoma stage IV

and I am sorry to be away from the forum about a year.. I think I was too exhausted about reading and thinking about cancer too much...
thanks for the ''welcome backs'' .. I felt like I came back to my friend's home again :) Lovely!
zeynep

catdander
Reply To: 2 years story… adenocarcinoma stage IV

No apologies please. We hope people are able to turn away from the cancer world of words when the can, need, and want.

laya d.
Reply To: 2 years story… adenocarcinoma stage IV

Thank you so much for your kind words of comfort. I really appreciate it.

Laya

P.S. Absolutely LOVE the picture of the 2 of you! Such a handsome couple you are. . .

marisa93
Reply To: 2 years story… adenocarcinoma stage IV

Hi zeynep,

It's nice to hear updates from the folks who have been around here before. Glad to hear your husband is doing as well as it sounds he is. That's always really nice to hear:) I agree w/Laya, nice pic of you two. And as Janine said, it's good to turn away from the cancer world sometimes. As you well know, when the need arises this is a good place to turn back to. Welcome back!

Lisa

Dr West
Reply To: 2 years story… adenocarcinoma stage IV

Janine did a great job unearthing my leading concern about the cumulative effects of a platinum doublet. It's definitely not conventional, and I suspect that few or no lung cancer experts I know have ever recommended this approach. However, because of the limiting effects of the cancer, we aren't too worried about long-term side effects of the chemo -- our leading concern is just the immediate side effects, which tend to become more problematic beyond 4-6 cycles, and definitely not studied or routinely recommended well beyond that.

In the setting of known advanced lung cancer, my general approach is really to ask "what is the least treatment necessary to control the disease now and for the next few months?". Because we're thinking of this in a longitudinal way, if I have a patient with a mercifully sensitive cancer, I'm far more inclined to try to give them a single agent over a protracted period than to test what is the most they can possibly tolerate.

It's great that he has done so well for so long, and nobody can know whether he might do just as well with less, but I can tell you that there are definitely cumulative effects from intensive chemotherapy that often lead to kidney and/or liver damage, marrow "burnout", and other issues that make us hit a wall and unable to safely administer more treatment in some of our heavily pretreated patients.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

Dr West
Reply To: 2 years story… adenocarcinoma stage IV

I should also say that many experts, myself included, are VERY wary about using PET scans to detect minimal changes on imaging that are over-interpreted. In other words, if a CT scan shows no new lesions and the existing disease isn't clearly larger, I think it's a mistake to make a treatment change because a PET scan shows a slight increase in the metabolic activity of a lesion that is stable in size. PET scans are absolutely not considered the standard of care for determining ongoing response to treatment in patients on longitudinal treatment for advanced NSCLC, and what may of us see is fruitless unnecessary changes in treatment made because of clinically insignificant progression. So if the PET is the only way to see progression, I think there's good reason to question whether the progression is significant enough to merit dropping the treatment.

There's a real danger here of "borrowing trouble". We see it all too often.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

zeynepdilek
Reply To: 2 years story… adenocarcinoma stage IV

Dr. West thank you for great information. I will talk to his doctor about these subjects ...

Until now he did not have side effects and his blood tests are normal we did not think about liver/ kidney damages (ALT / AST ).. but now getting into 2nd year of chemo I am really worrying about it...

He is also drinking alcohol - and this also concerns me a lot... On Tuesday he had his chemo cocktail ( cisplatin& alimta& avastin ) and on Wednesday night he had his whisky glass in his hand like a normal night! and it was normal for him anyway ...
I think this is stupid and try to tell him that chemo & alcohol & liver etc... but as his liver tests are always normal.......I can't prove it !

Maybe it's better to leave it to him .. whatever he feels like is best for him... really I don't know...

Thanks for listening and giving me great information...

Zeynep

zeynepdilek
Reply To: 2 years story… adenocarcinoma stage IV

I have also one other question but I feel it's wrong to ask it ... It's a big conflict with my brain and heart...

I want to be prepared for everything.... I'm a tough girl of 43 and a mother of a 15 year old daughter ...
I can handle anything in life.. Just give me time for preparation... I have to be prepared and let my daughter be prepared for everything...

So I really need your idea about life expectancy of my husband... I know it's just stupid to ask it like this but in other forum I saw that you told :

''The median survival, which is the time at which half of patients in a group have died, is about 8-10 months from the start of first treatment. Among those who go on to second line chemotherapy, the median survival is about 6-7 months, and for third line treatment, it’s about 4 months ''

and we are in 4th- or maybe we can say 5th line of treatment.... When I look at my husband he is just normal...

What to expect?

JimC
Reply To: 2 years story… adenocarcinoma stage IV

Hi zeynep,

I wish I had the answer for you, but no one really does. Dr. West quoted statistics, but those are medians and half the patients do better, half worse. The good news is that your husband is already past those medians and is doing well. One of the toughest things about a cancer diagnosis is that we just don't know how well or poorly we or our loved one will do. But here is a perspective offered a few years ago by GRACE member neilb (one of the two original moderators, by the way):

"The stats are static, but we as patients are not. Everything that happens to us improves or hurts our 2-year, or 3-year, or 5-year survival chances (as well as our median survival). Respond to a treatment, and your odds go up. Survive 11 months, and your one-year survival rate goes up--a lot. The way I like to look at it (which is a bit morbid, and maybe slightly competitive) is that there are 100 shells in a shell game. I'm wondering if I'm one of the two shells that has the pea under it (the two who survive 5 years). As long as I'm around, I could be one of those two shells. Now, 19 months after my recurrence, I don't know that I'm one of the two lucky shells. I do know, however, that 70-75 of the shells (all of which are not me) did not have the lucky pea under them. So, simply by hanging around this long, my chances of making it five years have increased from 2% (hypothetically) to 7 or 8% (2 out of 25 or 30, instead of 2 out of 100). Same for other survival goals.

Meanwhile, all we can do is keep on showing up for life.--Neil"

JimC
Forum moderator

<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>

Dr West
Reply To: 2 years story… adenocarcinoma stage IV

I really agree with everything Jim said and related from others. The stats aren't great for individuals, especially for individuals who are clearly exceptions. We can make better estimates for people in the midst of a dramatic decline, but I think it would be complete speculation for someone very fit, feeling well, who has already declared themselves as doing far better than the averages.

I don't mean to deluge you with platitudes, but if you look around the website, you know I'm pretty forthright about some tough subjects -- if I can't offer a meaningful answer, it's not that I'm trying to dodge the question, but rather that I don't want to just make one up for the sake of giving an answer.

I would definitely say it's in the range of years unless some random complication occurs, but I'd be just making up an answer beyond that.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

zeynepdilek
Reply To: 2 years story… adenocarcinoma stage IV

Dear Jim and Dr. West

Thank you very much for the straight answers...

And I have a news from my husband was having a little neuropathy on his feet and fingers. But last night he had pain on his feet and legs and more neuropathy..... ( he had his chemo on Tuesday)

And we decided to talk again with his doctor about cisplatin.... Probably he'll refuse cisplatin and maybe continue with alimta & avastin ....

We have 2 .5 weeks to decide until the next chemo day.

And in the meantime we'll see another doctor for a second opinion ( I know you can't say to use or not use a medicine here online ) I wish we could come and have a second opinion from you Dr. West..

Regards
Zeynep ( wife of the pilot :))))))

Dr West
Reply To: 2 years story… adenocarcinoma stage IV

Well, I'll be in Seattle if you ever find your way here.

Good luck!

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

zeynepdilek
Reply To: 2 years story… adenocarcinoma stage IV

This summer .. we'll try to come..