WHAT NEXT? cancer spread to belly - 1249412

debbien
Posts:9

hello. i am new to GRACE. my husband got nsclc in feb of 2009. it was stage 3. he had the upper right lobe removed then chemo then radiation. he had a stable plueral effusion that became encapsulated. in november of 2010 it cancer came back and he developed malignant plueral effusion. they drained 2 liters. it also spread to his bones and the left lung had too many tumors to count.

he started on Tarceva in december on 2010 and by feb everything was gone (except the stable pleural effusion). his scans were good but his CEA started rising in july of 2011. we went the the university of chicago to see if a trial for a tarceva booster was available. he didnt qualify because he needed at least 20% progression. Dr Salgia said to not even take CEA tests as they are not reliable. our dr kept taking and the numbers kept rising. the last we saw was in oct of 2011 and it was over 280. he did very well until the scan in june 2012. that showed "new mild to moderate nodularity along the omentum and mesentery, concerning for metastatic disease". the dr said to watch and see. then oct 2012 the scan said "increasing mesenteric carcinomatosis" and our dr recommended a biospy. we had the biospy and now we heard it is positive for mets.

before we got the results dr said we could try to get into a trail for a tarceva booster or start Alimta. casey was egfr positive. i am wondering if he would not be a good canditate for Lucinix or Crizotinib, or even Tarceva pulsing. i dont know if i should mention these things to the dr or just assume he has thought of them.

DO YOU THINK MY HUSBAND WOULD BE A GOOD CANDIDATE FOR THESE TREATMENTS. and also, IS THIS USUALLY A SIGNAL THAT THE CANCER IS SO WIDESPREAD THAT HE DOES NOT HAVE MUCH OF A CHANCE, SINCE IT SPREAD TO SUCH A DISTANT SITE?

Thank you so much
debbie

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Reply # - October 24, 2012, 06:15 AM

catdander
Posts:

Hello Debbie, Welcome to Grace. I think we will be able to help you find an understanding of what the most up to date practices are for Tarceva resistance (acquired resistance).
Your second opinion doctor is right the blood test aren't an accurate test for lung cancer. Otherwise the doctor is recommending options that are being done today by our doctors on Grace.
Pulsed tarceva wouldn't be appropriate, lucinix isn't fda approved for use, and crizotinib hasn't been shown to be effective on it's own.

Most doctors would suggest adding a drug to tarceva, stopping tarceva and trying something else, or looking into available trials.

Below is a link to our section on EGFR threads. They are choke full of questions like yours and include lots of links to our extensive library on the subject.

I hope you can find something that will work well.
Good luck and please don't hesitate to ask us further questions.
Janine
forum moderator

http://cancergrace.org/forum/cancer-treatments-symptom-management/egfr-…

Reply # - October 24, 2012, 12:57 PM

debbien
Posts: 9

do you find if it has spread to a distant site like the mesentery, that things have gone very far and the cancer is more extensive then we thought? are the treatments available just buying short amounts of time?

Reply # - October 24, 2012, 04:57 PM

catdander
Posts:

There are areas of the body that certain cancers are more likely to attach themselves and grow. But cancer will do just about anything including growing just about anywhere. Since being a member on Grace I've read several occasions of nsclc metastasizing in the stomach area.

Treatment for stage 4 or recurrent nsclc is not considered curable but it is treatable. When someone does quite well, as your husband did, on tarceva it has been shown that he is also likely to do well on other treatments. I'm sorry but all the treatments are considered liable to work for a limited time.

It isn't that uncommon for the cancer to spread in one place but still be contained in another. But with tarceva and an egfr mutation and good response you should be very encouraged about further treatment.

Are you able to search for trials? As is discussed in the posts linked to above, there are many very promising drugs being tested.

Reply # - October 24, 2012, 05:28 PM

Dr West
Posts: 4735

We sometimes see strange things develop when a lung cancer has been controlled very well for a long time. That includes odd patterns of spread.

I agree with Dr. Salgia (who was one of my teachers in my training in Boston, before we both moved) that watching a slowly rising CEA is not a fruitful thing. In the absence of visible evidence of progression, I think it only leads to very bad decisions.

In the face of very subtle radiographic progression, I still think it's not that dire to see very slow, subtle progression even if it's an unusual pattern of spread. And overall, I don't think there's any clear guideline for what to expect in a very individual case. I absolutely don't think this necessarily means that things are going to become very bad very quickly.

As Janine said, there is no one best answer to what to do next for patients with acquired resistance. I've written a lot about this question and suggest you review those links, which Janine provided, about the leading considerations.

Good luck.

-Dr. West

Reply # - October 24, 2012, 10:42 PM

debbien
Posts: 9

Dr West and Janine

thank you so much for responding. i have been on pins and needles and to hear form experienced people to a direct question is awesome. i tried searching the internet and did not see too much info on lung cancer mets to abdomen. i wanted to have an idea as to what our options are. just incase dr didnt suggest them,

debbie

Reply # - October 24, 2012, 11:53 PM

debbien
Posts: 9

Dr West. i am reading some of the links Janine posted above. i am wondering if staying on tarceva and adding the alimta would be prudent? not sure if you would consider this progression to be enough to warrent stopping tarceva considering it is still keeping the malignant plueral effusion, bone mets, and the many tumors in second lung at bay.

we are afraid if we start on just the alimta then the cancer in those other spots may return.

i am trying to learn as much as i can is a short period of time because we go to the dr thursday to discuss what next step is.

debbie

Reply # - October 25, 2012, 12:04 AM

debbien
Posts: 9

also Dr West, i am reading that it may be ok to stay on targeted therapy when there is limited progression. what do you consider limited progression? would the mets to the belly fall under that catagory?

debbie

Reply # - October 25, 2012, 12:05 PM

Dr West
Posts: 4735

Debbie,

I'm sorry that I really can't offer specific recommendations about what to do for another patient who isn't under my care. I specifically noted in my posts that there is no real way to define what constitutes "significant progression" vs. "limited progression". You need to have a clinician directly reviewing the films and overall situation. What I meant to convey is that I consider it very reasonable to consider adding chemo to a targeted therapy if the progression is slow and modest, but I am not in a position to make a recommendation about whether that is a strong choice for a patient in whom I'm not directly involved with their care.

Thanks for your understanding.

-Dr. West

Reply # - October 25, 2012, 12:40 PM

debbien
Posts: 9

@Janine i posted in the middle of the night. i knew i was not in a position to get an immediate response. thank youf or keeping up with these questions

@Dr West. thank you for the information you have provided. i have read several of the links provided about aquired resistance and feel much more informed. i understand you cant give specifics when he is not under your care.

we were recommended to see Dr Salgia again for clinical trials. otherwise, this dr thinks the trials are 1st choice and alimta is called for if casey is not eligible for a trial. and i asked about leaving him on the tarceva also he was not receptive. he said the combined side effects have more of a chance of toxicity. i guess we will know more after visiting Dr Salgia.

again, thank you so much. when you get a bad dx, you need answers right away and to have such you give me information so very fast is much appreciated.

debbie

Reply # - October 25, 2012, 03:57 PM

certain spring
Posts: 762

Hallo Debbie, just wanted to add that you sound very well-informed to me ...the whole question of how to treat post-Tarceva spread is still fairly new, and there seems to be no clear consensus as yet. Dr West's briefings cover the most up-to-date research and clinical trials. So you are well equipped to ask the right questions.
I was struck by your earlier question about whether it was worth trying new treatments in order to buy small amounts of time. It's an important question - I am also stage IV and so have thought about this a lot. I suppose it depends on how well your husband is feeling, how much discomfort he is likely to be in, and how disruptive any further treatment might be in comparison with the Tarceva. I've been amazed at how some GRACE members with extensive spread manage to live relatively normal lives for a while - people with liver mets, for instance, managing well on Alimta. On the other hand, some clinical trial drugs sound really difficult to cope with. So it's not a simple equation.
It's interesting (and good, of course) that the cancer in your husband's lung is still stable. I think in your position I would want to ask if the biopsy from the mets could yield any other information that might be useful. There have been cases of people's cancer changing from adeno to squamous, changing from NSCLC to SCLC, or acquiring mutations such as T790M, the main Tarceva resistance mutation - all as ways of evading the targeted therapy. There's nothing magic about a re-biopsy but it might make things a bit clearer and inform the hard decisions you're facing. Best wishes to you and your husband.

Reply # - October 27, 2012, 12:01 AM

debbien
Posts: 9

certainspring
thank you for the infor of the change from adeno to squamous. the biospy report said" it is metastatic adenocarcinoma so i am not sure if that the same as a dna test. it also said
"the lesional cells are strongly positive for CK7 and TTF-1. these same cells are negative for CK20."
i do not know what this means since its all new lingo for me.

any answers will be appreciated.
debbie

P.S. i am truely sorry if my comment about buying time seemed insensitive. i mean no offense. i can see that this must be a very terrible thing to have to ask yourself.

Reply # - October 27, 2012, 01:58 AM

certain spring
Posts: 762

Goodness no, I wasn't offended at all. For me, "buying time" is a perfectly acceptable expression. These are very hard decisions, and they are trade-offs as well.
Those numbers you quoted just describe the nature and position of the cancer.
All I meant is that if I were going for a second opinion I might ask - "Is there any information we could gather about the mets that could help us make a decision about treatment?" The answer might be "no" but it is always worth asking. Sounds as if you are in good hands with Dr Salgia, especially if he was involved in training Dr West! Best of luck with your husband's appointment.

Reply # - October 27, 2012, 11:23 PM

debbien
Posts: 9

Certain Spring

so glad i did not offend you.

we may decide to move up the appt to see Dr Salgia. casey had such bad cramps when going to the bathroom that he almost passed out. he wasnt constipated either. that was my first question.

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