Free to Breathe

Mutation testing for small cell lung cancer Stage 4

Hello all

I meet with my Doctors on the 17 Jan 17. I want to push the testing of mutations with them. When at Dana-Farber I agreed to all testing including genetic. However I am now getting my Chemo closer to home with a medical group affilated with Dana-Farber and Tufts.

What kind of mutation testing should I ask them to do. I understand if one knows what mutations one has there is a chance one can treat the cancer more directly and it may respond in a postive way.

Thank you Kym

30 Replies
oldestnewest

Hi kym,

I'm sorry I can't be of any help with this subject I just wanted to wish you well my thoughts and prayers are with you as we both travel this difficult road.

Best wishes,

RW

3 likes
Reply

Thank you RW

Reply

So far there are no targeted therapies for small cell lung cancer. Its my understanding that are a couple of very promising trials going on though including the use of immunotherapy drugs. There is one small cell mutation being studied that holds promise as well. It came up at a couple conferences last year. I'll try to find my notes.

2 likes
Reply

Denzie there are allot of trials going on, are you talking about PDL1 mutation? That is the one I am in the trial.

Reply

PDL-1 is one of them. There is another but the PDL-1 is the immunotherapy trial I waas thinking of. I will try to find the other sclc specific mutation I was referring to.

Reply

The mutation I was trying to remember is DLL3, the Rova-T intervention. I am excited by the research of immunotherapy in sclc. Its about time and I hope it is productive.

clinicaltrials.gov/ct2/resu...

Reply

Thank you Peggy

Reply

I survived small cell,I had chemo and radiation at the same time

3 likes
Reply

Excellent! My coworkers husband survived 7.5 years with sclc before dying ofbother causes. I hope you beat his record.

2 likes
Reply

Moffitt cancer hospital in Tampa has many clinical trials for non small cell lung cancer suggest promising results

Reply

Moffit is a Center of Excellence. You are lucky to have them so near.

It is gratifying to know that they are finally making progress and some headway on sclc. Sclc has not benefitted from the research into precision therapies the way nsclc has.

Please don't get me wrong, I'm glad that there have been therapies that benefit people I know with EGFR, ALK and ROS1 mutations. But for those meds I might never have had the honor of meeting Anita at a conference last year.

Sclc, affects 15% of the lung cancer population and, IMHO, more resources need to be spent on it. (I say this despite the fact that I have Nsclc).

1 like
Reply

Hi guys! This is my first maybe second time replying to anything on here. I read it a lot, but because I'm always SAD and petrified to see what I don't want to. My Mother was diagnosed Easter Sunday with a brain tumor and had emergency Brain surgery because the pressure was very close to killing her...... Dreading the diagnosis, we knew it was cancer and I just knew it was from her lungs. We lost our Father in June of 2002 to small cell very advanced lung cancer with mets! I was 23, my brother was 12 and my Mom was 49. My baby girl was 7. From diagnosis to death. 5 months!!!!!! They know there was something there but after 3 chest x-rays and could not see a thing but some Emphysema.... Untill they did a few PET scans and finally saw two very time spots on the upper left lung. And the tissue from what was removed from the brain was lung tissue. But just time bit, it was mainly fluid..... So yes it spread but they never had to remove the skull, went through the muscle because it was so much fluid. So then they had to concentrate on the brain first for after a 4day stay at the nuero Floor Mom was released.... She followed with 10x radiation treatments then did 18 rounds of a aggressive very toxic combination that she apparently agreed to let them try this on her but would not tell us until, well you'll hear soon . ,,She had to sign to accept. And not all can do the entire 18, alot of times it's 3-10. We almost lost her. The Pottasium interventions, blood transfusions..... Well we received in August and again last week, Her brain MRI is no evidence of disease and she also to receives Oct news that even the lung spots were gone.... We doing another PET of the lungs and abdomen next week and we will see. Anyone with experience of any kind but Stage 4 small cell lung.cancer that already went to.the brain..... And it was in such an operable spot it was safe without affecting her motor skills.... So please never loose hope. I was petrified, sad, scared, curious and at every single appt, test, transfusion, ambulance ride and her room mate on a cot while she in the hospital!!!!!! And all I know was what happened to our Father...But Mommy. NoNoNo

I would beg and scream and talk to God for strength!!!!!! And he gave it to us!!!!! I'm.sorry this is so long but if I had anything positive to read or.hear during the first 6 Months that would of been.so nice. But once the pathology report said small cell.stage 4..... I heard one positive story I'm all that time.... So I hope this helps someone as much as it helped me to finally share our story with you all. Thank you, Reannon77

1 like
Reply

Reannon, thank you for sharing this story of hope and survival. She’s had quite the rollercoaster ride but done so well.

2 likes
Reply

Reannon, let me join Denzie in thanking you and welcoming you. Such a long hard road, but here you are! Your mother was truly blessed to have you by her side. Hugs.

Reply

Kym,

If you go to this link on our website: freetobreathe.org/lung-canc... you can scroll down to Clinical Trials. Then it is simple to just answer a few questions and then find what trials are available in your area (and what they involve). It is a free service and there is no obligation - you can just try it out to see what is available.

This link talks about molecular tumor testing: freetobreathe.org/lung-canc...

Take a peek!

Peggy

1 like
Reply

Kym,

So far almost all of the work on mutations is in patients with adenocarcinoma. Please don't be too disappointed if your doctor says that they can't test because there are no identified mutations in SCLC that have targeted drugs. It's very hard to hear that an approach that works for other patients won't work for you - been there, heard that.

Right now you are doing so very much by enrolling in a clinical trial for your first line of treatment.

Good luck with your discussion.

Anita

3 likes
Reply

I know but I think we do have mutations and more research needs to be done.

2 likes
Reply

Definitely! In the end, all cancers are a genetic diseqse, cancers happen because of the accumulation of genetic mutations that largely occur as we live and finally reach a tipping point that triggers incontrolled growth. A fascinating book is "The Emperor of All Maladies" which describes the history of cancer treatment and what we know about it today.

Having a long list of the mutations in your cancer is cool stuff, but right now there may be no way that your doctors can use it to guide your treatment with the particular type of cancer you have. We are in the infancy of this approach to the disease. Comprehensive genetic panels are expensive (about $5000) and your insurance may refuse to pay for it if you don't have a type of cancer where doctors have a treatment that is based on a mutation.

1 like
Reply

My insurance paid for the liquid biopsy once again Moffitt cancer hospital in Tampa Florida is the best especially with non small cell

1 like
Reply

Well that is disappointing, but I can still try to ask though.

Reply

small cell is usually limited or extensive ,do you have ex

tensive?

1 like
Reply

I have extensive small cell

Reply

Liquid biopsy biocept or guardiant for mutations

Reply

did you have them done? Do you have small cell ?

Reply

There are several companies who do the testing. Mine was sent out to Foundation One. They will do a full panel--you don't have to tell them what to look for. I also have stage 4 nsclc but do not have the more common mutations found in healthy young nonsmokers. (ALK or EGFR, for example). The report will list your markers as well as available targeted therapies, chemo treatments, clinical trials, etc. You might get a giant bill, as I did, but it comes with a financial aid application (and all I did was fill it out) and they waived the entire cost beyond what insurance covered.

2 likes
Reply

Thank you, Jennifer going to ask my Doctor about this. :-)

1 like
Reply

There has been research into driving mutations for small cell lung cancer (SCLC), but unfortunately we have yet not found any mutations that can be effectively treated with targeted therapy. Guardant liquid biopsy testing is unlikely to reveal any information useful in treating SCLC at the present time. However, SCLC tends to have a lot of mutations, which may be why it seems to respond to immunotherapy in clinical trials. There are also some SCLC clinical trials that are exploring which biomarkers may be useful.

1 like
Reply

Thank you JF do you have a link to some of these SCLC clinical trials that are exploring which biomarkers maybe useful? I would not know how to begin to look for them.

Thank you Kym

1 like
Reply

Here is a list of open SCLC clinical trials dealing with biomarkers:

clinicaltrials.gov/ct2/resu...

Be sure to check out the CASTLE study run by Addario Lung Cancer Medical Institute (ALCMI). This study is collecting SCLC tissue samples to help researchers identify potential biomarkers and targets for SCLC.

clinicaltrials.gov/ct2/show...

Reply

Thank you JF

Reply

You may also like...