A spot has appeared on liver after 40 months of no chemo - 1255850

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lindy
A spot has appeared on liver after 40 months of no chemo - 1255850

Hi All,
Havent been online for a while. It has been NED for quite some time now but alas, not this time.
Wanted to provide an update on my Mum and also ask a question.

Update:
- The last time Mum has chemo was back in Nov-09 with post operative Alimta.
- She was NED for 6 months then a solitary nodule appeared in her superclav which was radiated. NED for another 6 month then it came back again in exactly the same spot.
- Surgically resected July 2011 and she has been NED for 21 months until today.
- April 2013 a single spot has appeared on her liver with an SUV update of 6.8.
- She has tested +ve for ALK rearrangement
- Onc has suggested removing the spot from liver but will discuss at next multi-diciplanary lung meeting to seek advise and will contact colleagues at MSK for advice

Question:
Is there anyone else who is ALK +ve and has has similar experience (ie surgically resected primary adeno but excellent response to aggressive treatment with long periods of NED in between recurrence) who is on crizotonib? Keen to hear from you to see how you are going in terms of results to date and general health.

Thanks Everyone.
Am over emotional and devastated. Was just really getting used to the smiles after leaving Dr Pavlakis' rooms. Oh Well - all of us on this forum deal with this amazingly broad spectrum of emotions every single day. We march on.

Lindy xxx

Dr West
Reply To: A spot has appeared on liver after 40 months of no

Lindy,

I'm very sorry to hear about this development, but if it's a single nodule after such a long interval, I think there's good reason to be hopeful she'll continue to do quite well, and I think that local treatment of that single lesion makes sense.

I do think that her situation is likely to be unique, so don't be surprised if you don't have someone else report their experience in a similar situation: there is likely to be nobody around here who has faced a similar one.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

catdander
Reply To: A spot has appeared on liver after 40 months of no

Hi Lindy, I'm sorry to hear this.
I find this link to be very helpful when picturing treatment for indolent lung cancer. http://cancergrace.org/lung/2013/01/23/acquired-resistance-algorithm/

Let us know how the team meeting goes.
All best,
Janine

laya d.
Reply To: A spot has appeared on liver after 40 months of no

Lindy:

Hi my dear. . .I had been thinking of you and of M recently. . .and was actually feeling quite overjoyed that we had not heard from you in quite some time. I also was wondering about the new baby :o) ...

But I'm so sorry to read about this new development. Upon reading what you'd written, I immediately thought that this is "another" solitary met (given that so much time has passed since the last time she had anything light up) and that it just needs to be hacked off.

So very very sorry you all are going through this. . .And, I have my fingers crossed that this issue will be resolved very quickly for M.

Much Love. . .xoxox,
Laya

lindy
Reply To: A spot has appeared on liver after 40 months of no

Thank you for all your responses.
I usually feel reassured after visiting my faithful and trusted resource, Grace, knowing that there are many people who have had a very similar experience with their cancer journey to date...This time perhaps it is just as reassuring to hear that there are not many in the same situation...?

I'll be online for some time, digesting the wealth of recent information posted on crizotinib. Looks like there are some interesting trials happening in that space at MSK.

Take Care my Friends,
Lindy
x

cards7up
Reply To: A spot has appeared on liver after 40 months of no

Lindy, I'm no doctor but I think that these recurrences all seem to be only one nodule here and there and to me that would be better than overall progression all at once. She could still do well for a long time with Xalkori. Wishing her all the best. Take care, Judy

lindy
Reply To: A spot has appeared on liver after 40 months of no

Thanks Judy. That is certainly what I am hoping.
By the way. Mum does not have the ALK rearrangement, she actually tested positive for ROS1. (I got them mixed up)...

Cheers,
Linda

craig
craig's picture
Reply To: A spot has appeared on liver after 40 months of no

Lindy,

ROS1 not ALK? Even better. ;-)

Just kidding. They are similar.

The genes are on different chromosomes but are 49% similar according to this article:
http://www.ncbi.nlm.nih.gov/pubmed/22500682
And in their ATP binding site (where the cascade through biochemical pathways to cancerous behavior begins) they are 77% alike, according to a Dr. Shaw presentation last year.

Given the similarities, it makes sense that some inhibitor drugs for ALK fusion mutation might work on ROS1 fusion mutations, too. And one particular pre-clinical experiment showed an IC50 potency of Xalkori (crizotinib) against the most-common ROS1 fusion (CD74-ROS1) of 4, compared to 21 against EML4-ALK. Since lower is better, this was a very good showing.

The down-side is that not all 2nd generation drugs work well against ROS1. For example, a recent AACR presentation poster by Ariad included data for Chugai CH5424802 against ROS1 fusions that didn't look very effective at all. IC50 potency of 757 to more than 10,000 (yuk!) for a few variants of ROS1, vs. 17 to 132 for crizotinib against those in their lab experiments. Fortunately there are a couple of other experimental ALK drugs that still seem promising.

Another down-side is that there aren't as many ROS1ers, so research on ROS1 might attract less funding and donations than more common ones. So I hope it can ride on the coattails of ALK for a long way.

Best hopes,

Craig

_________________________________
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)

lindy
Reply To: A spot has appeared on liver after 40 months of no

Am really worried..
Mum had her biopsy of segment 4a of liver this morning and she has complications.. There is bleeding around heart. her neck is in pain. She is nit allowed to leave the hospital while they decide what, if anything, to do. They are monitoring her.

Is it bad that the blood from the liver biopsy has pooled around her heart? Presumably it is already in get blood stream so what does this all mean??

Any one have any ideas?
Will this make it more spread?

JimC
Reply To: A spot has appeared on liver after 40 months of no

Lindy,

I'm sorry to hear of your Mum's complications. I hope that her doctors can resolve these problems soon, and that the biopsy will be negative for cancer.

The main reason to worry about spreading cancer cells from one part of the body to another is when the cancer is localized to the original organ (in this case her lung) and in the course of some form of invasive procedure cancer cells are spread outside of that organ.

Hopefully the biopsy will show that the spot on her liver is not cancer. If that's the case, then there are no cancer cells to spread. If it is cancer, that means that the cancer cells traveled through the bloodstream from the lung to the liver prior to the biopsy procedure, so that procedure did not cause the cancer cells to spread from the lung.

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>

lindy
Reply To: A spot has appeared on liver after 40 months of no

Thanks for the quick reply Jim.
They are pretty certain it's met of her lung cancer. Think they did biopsy to confirm it's same as original tumor and hasn't changed???
Plan is to start crizotinib.

She us stable now. In the CCU cardiac care unit.
Was already in the blood as you say but now this pool if blood has collected round her heart.
Given the risks with liver I wonder why they dud it instead of surgical resection....

Linda
Worried ... Again

Dr West
Reply To: A spot has appeared on liver after 40 months of no

Bleeding can certainly happen with a liver biopsy, but it's a much less risky procedure than a resection. I'm sorry she had that complication, but it's just something that can happen a small fraction of the time. Now that they know what's happening, hopefully they'll see her doing well and not need to intervene. Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

lindy
Reply To: A spot has appeared on liver after 40 months of no

Thanks. Just got update from the Cardiologist...the needle pierced the membrane surrounding the heart. Liver looks ok. Doesn't look like shell be going to
Disney land next week with my daughter....

certain spring
Reply To: A spot has appeared on liver after 40 months of no

Sorry to hear this - very stressful for you and of course for your mother. Hope she is being well looked after.

craig
craig's picture
Reply To: A spot has appeared on liver after 40 months of no

FYI - if the primary tumor was ALK-driven and not previously treated with Xalkori and you're not sure about whether mets have ALK, then . . .

. . . I might be misunderstanding this article, but I think it indicates that in their study the driving mutation (e.g., ALK) was 94% likely to be the same in mets as in the original tumor. However I don't know from this research news article whether they went down to the specific variant rather than just knowing both passed the ALK fusion FISH test (which different variants of ALK could do).
http://www.medpagetoday.com/HematologyOncology/LungCancer/38752

Best hopes,

Craig

_________________________________
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 West
Reply To: A spot has appeared on liver after 40 months of no

I would be very cautious about using this kind of research to guide clinical decisions. The numbers of patients and biopsies is very small, and it's just one small piece of a picture, so I think very few, if any, experienced clinical oncologists would consider this as appropriate to shape patient management.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

lindy
Reply To: A spot has appeared on liver after 40 months of no

Hiya,
Read the article; looks interesting and did make me wonder, 'why did they do the biopsy when they are pretty certain it's a met from her primary lung tumor which had been resected'. Perhaps because it had been 23 months of being NED?

They pierced the membrane of her heart accidentally and the immediate concern is tamponade. Her blood pressure had dropped to around 70 but has since been
stable at around 95-102...

After we get through thus hurdle, my worry is about how this very messy biopsy has impacted her malignancy which was invisible everywhere else since dx in May 09...
Sure, in order for it to get to her liver it travelled through her blood but that's different (or is it?) from having your pericardium bathed in blood which came from a spot on your liver...

craig
craig's picture
Reply To: A spot has appeared on liver after 40 months of no

Lindy,

FWIW, I doubt an oncologist would re-biopsy unless they thought the results (e.g., the type of drug resistance that is in the frontrunner cancer) might change treatment plans.

For example, if someone had progression after Xalkori for ALK, even if it is still ALK some oncologists will get value in knowing that rather than guessing that (i.e., 2nd generation ALK drug might be worth trying vs. ALK not found in the frontrunner cancer). And knowing the specific variant of ALK could be useful to some oncologists (if they have knowledge of which common variants do or don't usually respond to each of the promising 2nd generation drugs). And if the mechanism of resistance is very different (e.g., SCLC after Tarceva for EGFR-driven cancer), treatment plans might change. So not only is the 94% only part of the story, but you might not want to be wrong that other 6% of the time if it's avoidable.

That's my guess.

Best hopes,

Craig

_________________________________
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)

lindy
Reply To: A spot has appeared on liver after 40 months of no

Hi Craig,
Makes sense...
Mum's right lung was resented so lots if tissue from the primary which has been tested for lots of things. Test result showed ROS1. Never been on crizotinib before. Actually, no systemic treatment, targetted or otherwise for 40 months...
Hope they got what they needed. They made a ness if it the first time...

craig
craig's picture
Reply To: A spot has appeared on liver after 40 months of no

A different scenario then, Lindy: If early stage cancer was removed surgically, and cancer appeared more than 3 years later, I can imagine some doctors wanting to test a biopsy sample of the new appearance to see if test results suggest it is a recurrence of the original or a new primary tumor. (I'd rather have had two early-stage primaries than stage IV -- preferable treatment options are different.)

That said, I understand complication from biopsies occur, but usually minor. When nasty complications occur I wonder what could have been done differently to avoid that, and how they can be prevented for other people in the future who need similar biopsies.

Best hopes,

Craig

_________________________________
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 West
Reply To: A spot has appeared on liver after 40 months of no

Liver biopsies can bleed, so there's definitely some risk involved, though it's rare to have it become a very serious complication.

As Craig suggested, the two main reasons to do a biopsy would be to ensure that the new lesion is a metastatic lesion from the original cancer (likely, but less of a given when there's a single metastatic lesion and much time has passed since the original diagnosis), or to see if the molecular marker pattern might yield to a unique treatment plan that wouldn't otherwise be recommended.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

lindy
Reply To: A spot has appeared on liver after 40 months of no

Thanks Craig.

I've got a bit of an update for anyone who may be interested...

* There was enough tissue obtained from the biopsy.
* My Mum's oncologist doesnt seem concerned about needle track seeding
* The pericardial effusion is now very small
* The reason they did the biopsy was they wanted to confirm ROS1 to get on a Crizotinib trial and though the sample from the original tumor and the subsequent spot in her neck were ROS1, given the 23 month gap, they felt it makes a stronger case for it if the biopsy also showed it.

Also apparently they want to be as least invasive as possible so it was a good thing they didn't do the ablasion thingy becuase the needle/tube is bigger and woudl have caused more damage.

Next step is rest and recovery, then resection followed by some criz.

I have learnt a lot about pericardial effusions and tamponade in the last 3 days...Soem one wise told me that with cancer, a lot of the time it's not actually the cancer that end up getting you...it's the stuff that you do to yourself in order to get the cancer that ends up getting you...

Lindy

lindy
Reply To: A spot has appeared on liver after 40 months of no

Thanks Craig.

I\'ve got a bit of an update for anyone who may be interested...

* There was enough tissue obtained from the biopsy.
* My Mum\'s oncologist doesnt seem concerned about needle track seeding
* The preicardinal effusion is now very small
* The reason they did the biopsy was they wanted to confirm ROS1 to get on a Crizotinib trial and though the sample from the original tumor and the subsequent spot in her neck were ROS1, given the 23 month gap, they felt it makes a stronger case for it if the biopsy also showed it.

Also apparently they want to be as least invasive as possible so it was a good thing they didnt to the ablasion thingy becuase the needle/tube is bigger and woudl have caused more damage.

Next step is rest and recovery, then resection followed by some criz.

I have learnt a lot about preicardinal effusions and tamponade in the last 3 days...Soem one wise told me that with cancer, a lot of the time it\'s not actually the cancer that end up getting you...it\'s the stuff that you do to yourself in order to get the cancer that ends up getting you...

Lindy

Dr West
Reply To: A spot has appeared on liver after 40 months of no

That's part of why it makes sense to be judicious about focusing on things that have an established value. Sometimes our treatments are worse than the disease, especially if we're doing them because we're just itching to do something.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

laya d.
Reply To: A spot has appeared on liver after 40 months of no

Hi Lindy:

So sorry to read of this complication for M. Hope she is faring OK right now.

I am keeping all of you very very very close!

Much Love,
Laya