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Waiting for treatment plan


RJN

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Just to check in. How long did you wait for your treatment plan? I had the first formal diagnosis of stage 4 NSCLC three weeks ago, based on bronchoscopy and PET-CT. I was told it would take another approx 1-2 weeks to get my full results and plan, incl bio markers etc. I met with oncology team 2 weeks ago and got some extra blood work (the liquid biopsy, I believe), and they said they’d be in touch last week. Given that it has now been nearly 3 months from my first GP visit, I am getting somewhat anxious - and even worse, my family are annoying the h*ck out of me with their constant pushing. Any words of wisdom?

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I waited about a month from the time the tissue biopsy results were known before treatment started. During this dwell period, I had sessions with radiation technicians to set my orientation for fractional general radiation, part of my first line treatment. My first treatment was daily radiation (M-F) for 6 weeks and weekly infusions of Taxol and Carboplatin. As I recall, I had several blood draws about a week before my first chemo. I was diagnosed in 2004 and since then, time between diagnosis and first treatments in the US can often be longer. Today, biopsy tissue samples are often sent for follow-on laboratory analysis do check for targeted therapy and immunotherapy suitability. This adds about 2 weeks to start of chemotherapy. 

Stay the course.

Tom

 

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Sounds pretty par for the course. I was diagnosed (this time--I had a lobectomy three years previously) with a bronchoscopy, along with a PET-CT and brain MRI. That took at least a couple of weeks (and I had to get the surgeon who did my lobectomy to move up the biopsy, which was originally scheduled a month down the line). I learned that my oncologist (who was new to me--my previous oncologist had moved to another state) saw no reason to do comprehensive molecular testing--he tested only for the most common mutations. So that led to a consult with an oncologist at another cancer center, who said the additional testing was absolutely appropriate. I switched doctors and consulted with a radiation oncologist to confirm that I wasn't a good candidate for radiation. Meantime, I had a port implanted and we proceeded with first-line chemo/immunotherapy (I had no targetable mutations). All told, it was a few weeks before I started treatment.

I wouldn't worry too much. A few weeks is unlikely to make any difference, but getting the test results to determine the right treatment is critical.

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Tom Galli and I had about the same wait and the same first-line treatment (chemo/radiation). During that month of waiting in 2019, I went through a bunch of procedures:  got a port, had a bulk Teflon injection into my paralyzed left vocal cord, got my radiation tattoos and had lots of dental work done prior to chemo. So I was busy while I waited and worried. These days there is so much sophisticated (and necessary) testing to be done that it takes time. 

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I had my first doctor’s appointment on June 2,2018, there was a long period of misdiagnosis until mid September.  It was almost eight weeks before my treatment plan was finalized.  The longest part was waiting for the biomarker results took about four weeks.  So hopefully these days it’s a bit faster for you.  

On the brighter side once my treatment started, I felt a whole lot better within a couple of weeks…. Almost back to my “old” self.  

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I was lucky it seems. I was diagnosed in early January and had my lobectomy in early February. Waiting is almost as bad as the diagnosis.

Advocate for yourself. The squeaky wheel really does get attention faster than someone who waits.

Wishing you the best

Peace

Tom

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Update: As it turns out, I think I got “lost” somewhere in the system, but finally managed to connect and talk to a doctor (lesson here, don’t be too patient!).

They are still missing my PDL levels, so until I get these I can’t get a final plan, but depending on PDL I will either be on Pembro (That’s what Keytruda is referred to here) alone or the triplet therapy. Each every three weeks for 4 cycles.

The good news is that I am suitable for the new KRAS drug Sotorasib, so that should be available for second line treatment. Always good to know there is a plan after standard treatment.

it also seems the triplet and/or keytruda has relatively low level side effects, but of course scoring this site for your experiences. 
 

The bad news is that treatment will take 3 weeks or so before I start, but as I am feeling ok right now, I trust that this won’t be a big issue. Clinic starting me on a heap of vitamins and folic acid first.

No real questions right now, but any thoughts welcome!

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Glad you were finally "found" by the system. You're absolutely right not to be too patient. You should also not assume that everyone has read the right reports and is doing everything correctly. My docs and nurses are terrific, but they've been known to make mistakes and get details wrong. If that happens, speak up right away so it can be corrected. Worst case, they were right and you were wrong, but no harm done by asking.

The PDL tests, I believe, are pretty fast. It's just a matter of staining and looking at the cells--not like genetic sequencing.

And yeah, for me the triplet (same drugs you're getting) was not too bad.

Keep us posted!

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RJN,

"Don't be too patient!" Now those are words for lung cancer survivors to live by. Murphy's Law always operates: "if something can go wrong, it will and at the worst possible moment."

I do hope your lab results are in soon so you can start treatment.

Stay the course.

Tom

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