continued response to Alimta/avastin maintenance therapy in ALK +'ve NSCLC - 1253686

fionam
Posts:6

Hi
my husband was Dx stage 4 NSCLC, ALK +'ve, 14/12 ago, with initial lesion being only 26 mm but with pleural spread.
With 4 cycles of carbo/alimta/avastin there was shrinkage to 18mm.
there was some further shrinkage with initial maintenance of 3 weekly cycles of Alimta/Avastin then stability at 12 mm for several months, but now with last scan there has continued to be shrinkage, now down to 7mm!

Has there been other such positive response to ongoing Alimta/Avastin maintenance therapy in ALK +'ve pts?

We missed being on the phase 3 Crizotinib trial in Aust, because he had already had first dose of Avastin.
My understanding is that that trial is now finished and all those who were on the Alimta arm, are now on Crizotinib.
Is it the Avastin that has made the difference?
(Note he's also been on Duloxetine for last 6/12, for peripheral neuropathy side effects.)

I appreciate we have to wait for the Alimta/Avastin trial that is ongoing, but I understand early results on breast and bowel cancer seemed not to be so promising.

Maybe it's the power of prayer.

grateful, but a little confused!

fiona and David McDonald

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Reply # - February 12, 2013, 04:32 AM

certain spring
Posts: 762

Hi FionaM. It's great to hear your husband has been doing so well on Alimta. Until a doctor comes along, here are some links that might be of interest. There is indeed evidence that patients with an ALK rearrangement may do particularly well on Alimta:
http://cancergrace.org/lung/2011/02/26/alimta-for-alk-rearrangment/
- although some recent research suggests the good response may be more closed related to smoking history rather than ALK status:
http://cancergrace.org/topic/alimta-sensitivity-correlates-with-never-o…
The question of avastin and alimta maintenance is being investigated by a clinical trial known (in a characteristically user-friendly way) as ECOG 5508:
http://cancergrace.org/lung/2011/12/21/follow-up-on-avaperl-trial-of-ma…
All best to you and your husband.

Reply # - February 12, 2013, 11:45 AM

catdander
Posts:

Hi Fiona and David, It's certainly good news in a situation that causes so much stress. As usual certain spring has given you very good links to follow that will help explain your thinking on this. Another piece of puzzle is most likely the biology of the cancer itself. In this blog/post Dr. West describes how everyone's cancer has an individual biology that among so much other includes how fast or slow it grows and how well it responds to treatment.
My husband seems to have hit the jackpot on this because he has done so well on everything given. Dr. West says some cancers do well no matter what you throw at it. With that you have the other side of the spectrum where some cancers don't respond to the best treatment options. Unfortunately we have such an example here in Birmingham. Last week we lost a friend from lung cancer. He'd been diagnosed only December but the biology of his cancer was was much more aggressive.

It sounds like David has what I call well behaved cancer that either responds especially well or is so indolent (slow growing) that it wouldn't matter whether he was on treatment or not.

http://cancergrace.org/cancer-101/2013/01/16/progression-rate/

I hope this helps and please feel free to ask more questions as you learn more,
Janine
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Reply # - February 12, 2013, 08:20 PM

Dr West
Posts: 4735

That's really great to hear!

Janine and certain spring have already given you the highlights. While it's still open to debate whether the good results often seen with Alimta (pemetrexed) in ALK-positive patients are more directly related to never-smoker status or the ALK-positivity, it's been reported in Asia and the US, and I've seen several of my own ALK-positive patients do extremely well on Alimta (though, come to think of it, most or all have also been never-smokers).

In general, the general approach has been to ride the wave of whatever treatment is both effective and well tolerated, with the extra bonus that the commercial availability of XALKORI (crizotinib) provides one more extremely promising option.

-Dr. West

Reply # - February 13, 2013, 01:26 AM

fionam
Posts: 6

Dear Janine, Certain Sring and Dr West

thanks for your input.
i guess we'll have to wait for the ECOG trial re the value of Avastin generally.
it's a lot of money, but don't want to change a game plan that's working.

Our oncologist was actually quite chirpy and happy to see us today.
nice to make his day.
he told us a year ago that David would be dead by now, so i think he's happy to be proved wrong!

And yes, we do have crizotinib up our sleeve, but not approved yet in Aust and only available to us once he progresses on Alimta!
he'll put up with the side effects for now.

grateful he has a "well behaved" cancer and that he was a never smoker: well he did sneak a few as a teenager!

May there be lots more "super responders" out there, who access the right treatment

thanks again
fiona

Reply # - February 13, 2013, 05:52 AM

dr. weiss
Posts: 206

My general treatment philosophy is the same as Dr. West's. I define, "working" as both cancer controlled, and not too much side effects. As long as both conditions are met, I typically "ride the wave" when something is working.

Reply # - February 13, 2013, 06:52 AM

mariya
Posts: 8

Hi Certain Spring,

Your case is very interesting-being diagnosed with squamous lung cancer with ALK + and second biopsy showed -EGFR with exon19 and ALK-negative. It doesn't look very common case.

In that instance, do you think you will be eligible for the PD1 trial here in the UK? I have been told that is for Squamous lung cancer patients only but your case is different .
I am with Lung adenocarcinoma(2007) with metastasis on left adrenal gland, peritoneum lymph nodes and couple of others lymph nodes involved. Went trough operation2008 ,chemo(carbo/vineralbine,progession-not no response to that then,switch to Tarceva-lasted to 8 months,then progression,started Carbo/Alimta -stable for another thee months ,progression again,
but still on the same regiment,according to oncologist even with little progression but general 'stable ' result it may work again... considering Tarceva if there will be more progression or or Afatinib.
Genetic testing: ALK negative,ROS negative. EGFR-hasn't been tested..
Many Thanks
Mariya

Reply # - February 13, 2013, 08:16 AM

aunttootsie001
Posts: 324

Good to hear and I will also ck out the links as I am always looking to the future providing current treatment doesn't last? I'm hoping for an extra long Run on the Xalkori. Like you said I want to ride the Wave!

Reply # - February 15, 2013, 12:27 AM

certain spring
Posts: 762

Hallo Mariya. Thanks for commenting, and it is great to see that you have passed the five-year mark. It sounds as if you have a quick-witted oncologist who is good at outmanoeuvring the cancer!
I hadn't heard of a PD-1 trial here in the UK - do you know where it is? I would be interested to know.
In fact I am ALK negative and EGFR positive with a squamous tumour - or at least the biopsies show it to be squamous. (My profile has dropped off the face of the earth for some reason.) All best wishes.

Reply # - February 15, 2013, 02:31 AM

mariya
Posts: 8

Certain spring,

Thanks for your encouragements. I am glad I have survived five years with a good quality of life. My oncologist is good but at this time he thinks that we don't have treatment options left and probably the end will soon come..., so that's why I am looking for a second opinion...I can't accept yet that this is the end...and nothing can be done. My philosophy is to stay alive as long as possible,especially now when a lot of trials will come out.. and we never know what will come around the corner.

Southampton General Hospital is going to run trial PD1 for squamous lung cancer only. I was very disappointed to hear that... my cancer is Adenocarcinoma. I don't know if they are going to be PD1 trials anywhere else in the UK , and I hope so and I hope they will do more extensive trials for different type of cancers including adenocarcinoma. So my main goal is to stay alive and be lucky to get into one of those trials as soo as possible.
So much is going on with trials and research and I want to believe that we may be lucky with a new immunotherapy treatment. Its worth checking for other places for PD1 trial in the UK.Where do you live?

Best Wishes,

Mariya

Reply # - February 15, 2013, 07:41 AM

certain spring
Posts: 762

(Apologies to the OP for going off topic).
Mariya, I am sorry you are getting disheartening signals from your oncologist and I hope you are not feeling too unwell. You must have a lot on your mind so it is very good of you to spare a thought for others. I am in London and Oxford. I am seeing someone next week who may know more about possible PD-1 trials in the UK, so if I have any news I shall post it. Hang on in there - I agree that we don't know what is round the corner, and that's true in life as well as in cancer research. All best.

Reply # - February 15, 2013, 10:16 AM

mariya
Posts: 8

Certain Spring,

I will be waiting for a good news from you about PD1 trial. I have been told today ,they will open PD1 trial in Oxford but not quite sure if they will accept cancer patients with different cancers than squamous The first trial in America with encouraging result where for a people with different solid cancers. Here in Southamton they recruit patients with squamous only and I don't fit the criteria. So I will keep an eye on this and hope they will be other places with more extensive trials.

Best Wishes

Mariya

Reply # - February 15, 2013, 10:37 AM

catdander
Posts:

CS and Mariya, I'm sure Fiona is more than happy for you to use her thread for this conversation and I certainly don't mind but I think it will be more accessible to the general public on it's own moving forward. Either fo you may start a new thread in the drug development/trials forum if you like. Or I can move the last few posts concerning this topic. Let me know.

I know we're all very excited about this new promising treatment. FeistD's last post is so encouraging. But I will curb my enthusiasm as a mature adult. :wink: :-| :-P :lol: :-D :-? really, I'm very mature.

Reply # - February 16, 2013, 01:00 PM

fionam
Posts: 6

Dear Catdander, MAriya, Certain Springs, LAyla D and aunttootsie

I guess it shows how individual cancers are and how individual the responses can be.

also how common and widespread and affecting even one of us in so many ways:

I've just visited a friend with ca pancreas who was told by her oncologist that he'd run out of options and is now on palliative care, having survived for 3 1/2 years: certainly no one predicted that at the start. So Mariya, i'm sorry your oncologist has reached that conclusion. Praying you find another oncologist with options and another trial soon

My niece in Slovenia has just been Dx with melanoma.
now that is an area where Australia excels in research, so she's coming home to have treatment and access to trials.
So i could well be researching PD trials for her soon.

Aunttootsie may you continue to be clear for a long time before you have to look for further option.

Layla D i'm sorry about your loss. sounds like your mum tried everything.

thanks everyone
God bless
fiona

Reply # - February 16, 2013, 04:15 PM

catdander
Posts:

You're right fiona, if nsclc can vary so dramatically in how an individual will do another type of cancer is a completely different world. I realize that more now that I know a little bit about lung cancer. I was recently blown away by how I had no clue about what was being said when I read something about a different cancer.

Mariya, don't worry a bit about it. It happens all the time, it's just the way the conversations happen and we're glad for it. I hope you will have an opportunity to learn more and even give it a go. When the conversation starts up again it will be good to start a new thread so others looking for the PD 1 or whatever it may be will be able to find it too.
We don't want anyone to feel so worried about breaking the rules that you can't get your thoughts out.

All the best,
Janine

Reply # - February 17, 2013, 09:14 AM

mariya
Posts: 8

Thank's guys, for your understanding.I 'am not going to loose my hope yet and will try and fight as much as I can in the hope that some new treatment will come out soon- PD1 trial and hopefully other new trials will come our way soon.

Best Wishes,

Mariya

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