Blood biopsy

[dreich58]

My doctor ordered a blood biopsy and PET scan as last CT scan showed a slight change. The blood biopsy came back with the Exon 19 deletion mutation. Has anyone else had experience with this?

[imina]

What is a blood biopsy. Does it detect cancer. Why is the doctor ordering it. I need to know if it's something I can ask my doctor for

[Dcastevens in reply to imina]

They can sometimes find genetic mutations with a blood biopsy but sometimes have to have tissue from the tumor. You should have had testing for mutations when you were diagnosed

[dreich58 in reply to Dcastevens]

Unfortunately, at our local hospital the only thing they tested for was whether I had the EGFR or ALK mutation as my biopsy showed adenosquamous carcinoma and they weren't sure how to treat it. Since then I've gone to Denver for my treatments but we already knew I had the EGFR mutation so no further testing was done at the time.

[Ldk1 in reply to dreich58]

We have the same gene mutation. How are they treating your cancer? We are taking Iressa.

[dreich58]

It's something new, just approved last year I believe. My last CT scan showed a change and the area is difficult to do a needle biopsy or biopsy by broncoscopy so my oncologist ordered this. They take two vials of blood then send it to a company to DNA sequence the cancer cells for mutations. My onc. thought it would be negative because the change was so small but it did come back with a mutation. I have a PET scan the 17th and then meet with my onc. the 21st to go over everything.

[scifiknitter Blogger]

Dreich58,

I have the exon 19 deletion - it's one variation of the group of lung cancer mutations called EGFR (epidermal growth factor receptor). Having this mutation in your cancer means you are eligible for targeted treatment - you take a pill, once per day. I've been on targeted treatment for 30 months.

There are three possible drugs that may be prescribed for someone who has not yet taken targeted treatment - Iressa (gefitinib), Tarceva (erlotinib), and Gilotrif (afatinib). The last one has a reputation for having the harshest side effects. Possible side effects include skin rashes (very common, and controllable with other drugs), changes in hair growth and texture, brittle fingernails, and diarrhea (again, generally controllable). These side effects can be annoying, but in general patients on targeted therapy often report very good quality of life.

Let us know what your doctor recommends!

Anita

[dreich58 in reply to scifiknitter]

I have been on Tarceva for the past 13 months when it was determined I had the EGFR mutation. There was a slight change with my last CT scan which is why the blood biopsy was done and I have a PET scan scheduled for the 17th. I'll see my onc. the 21st to determine where we go from here.

[scifiknitter Blogger in reply to dreich58]

Ahhhh! The exon 19 deletion is part of what is called the EGFR mutation - there are also EGFR variants affecting exons 20 and 21. Exon 19 usually responds readily to drugs like Tarceva.

If you are starting to show resistance to Tarceva, you should be checked for the T790M mutation, which arises during treatment with Tarceva. It sounds like you had one of the new comprehensive blood biopsy tests, and it may well have already tested for T790M - ask your doctor! If you have it, you would be eligible to take Tagrisso as your next line of treatment. I'm on Tagrisso now, and it's been good to me.

Anita

[dreich58 in reply to scifiknitter]

I got a copy of the blood biopsy report and it doesn't show the T790M mutation unless I'm not reading something right.

[scifiknitter Blogger in reply to dreich58]

I don't have any advice to add at this point. Your next appointment with your doctor will explain exactly what your onc thinks is going on. Sending best hopes!

[Ldk1 in reply to scifiknitter]

So is Targrisso the second line of defense after Tarcesa?

What are your side effects?

[scifiknitter Blogger in reply to Ldk1]

Tagrisso is Tarceva-lite. I had a bad rash on my arms at one point that was aggravated by sun exposure & took a long time to heal. Skin dry, but not as, hair growing slowly but texture has not become kinky, eyelashes growing but it's taken a year to start getting wacko long, fingernails getting crappier over time, soft BMs but no diarrhea. Lots of energy & sense of well-being. It's been good to me.

[Ldk1 in reply to scifiknitter]

Glad to hear you are still going strong on TARGETED therapy at 30 months. Which pill are you on and do you take chemo in combination?

[scifiknitter Blogger in reply to Ldk1]

I'm on my third line of treatment - Tarceva for 10 months, then a clinical trial for Clovis CO-1686 for 8 months, and Tagrisso for 12 months. No chemo yet, it will be up next after Tagrisso poops out. I'm expecting to take carbo/Alimta.

[uplockman]

I have been on Tarceva for a year and my oncologist advised me last month that I would be on it the rest of my life given no changes to require different treatment. Getting to the right dosage was somewhat traumatic at first after the trauma of having a catheter implanted for a pleural effusion for several weeks. I ran the gamut of side effects the worst of which was the sunburned feeling and looking pain. Finally found a coconut oil based lotion to treat. Every so-called lotion, even the most expensive, had alcohol in some form as an ingredient which excaserbated the burning. Even my eyes were nearly swollen shut. Outside of that being the worst I could write the side effects for Tarceva pretty exact. Does anyone know of anyone else taking Tarceva for over a year and what their experience was? I still have side effects but manageable. With 3 sons and their families, I have 8 grandchildren to keep me going since I became a widow in 2015 Shortly thereafter I learned of this 3rd bout with cancer, 2nd with lung cancer. I presently am dealing with a fractured pelvis but I still am living for today. Thank you God🙏🏻

[Jenniferroseolson in reply to uplockman]

I have a friend who was cancer-stable on tarceva 9 years before her lung cancer began to grow. I hope you do as well!

[uplockman in reply to Jenniferroseolson]

Thank you for sharing this great news. Living that long would be the greatest gift of my life and even any number greater than 2 would be worth the struggle at times. God bless.

[Ldk1 in reply to uplockman]

Did you have diarrhea and nausea?

[Ldk1]

Yes we had 19 also. Did you have a gene mutation biopsy?

[dreich58 in reply to Ldk1]

Yes.