Just diagnosed with stage 4 NSCLC with bone mets. What treatment should I start? - 1293968

masalovai
Posts:43

Dear Doctors ,please help me to define the right treatment !

I was just diagnosed with NSCLC adenocarcinoma that is poorly differentiated (CK7 positive in all atypical cells, TTF1 strongly positive in all cells, P63 atypical cells weakly positive ).

The results from my PET scan show small mets in bones, so I am in stage 4 now. I’m still waiting for results for gene mutation and PD-L1 for immunotherapy .

Are targeted or immuno drugs appropriate as a first line treatment, or is the standard chemo/radiation more effective as the first line treatment? If chemo/radiation is more effective, does it make sense to start it immediately and not wait for the pathology results?

Do bone mets react to chemo treatment? I have requested zoledronic acid from my oncologist to reduce and delay the chance of bone damage. Does zoledronic acid directly affect cancer tumors in bones?
I am also waiting for my brain mri results.

Is any one here with similar situation?

I am so happy I’ve found this site and greatly admire the Doctors here, who are obviously dedicated and passionate professionals! Your advice is invaluable!

To the members of this forum who are in a similar situation, please share your stories. I have a great hope that the Doctors here could find the time to answer my questions.

I will update my profile and post as soon as I receive results from the pathology lab.

Looking forward to hearing from you.
Many thanks
Irina

Thank you.

Forums

JimC
Posts: 2753

Hi Irina,

Welcome to GRACE. I am sorry to hear of your diagnosis, and I hope we can help you with the questions you have.

It's natural to want to start treatment as quickly as possible, but unless you have rapidly progressing disease (as determined by worsening symptoms or changes on scans), it is best to wait until you have the results from the brain MRI and genetic testing.

We certainly hope the MRI will show no evidence of disease, but if there is then your oncologist may want to start with radiation to treat any brain metastases before continuing with systemic (full-body) treatment such as chemotherapy, targeted therapy or immunotherapy. Aside from its use in treating brain mets, in stage IV disease radiation tends only to be used to relieve symptoms or prevent bone fractures.

If testing reveals a genetic mutation or alteration, such as EGFR or ALK, for which there is a targeted therapy available, then that would usually be the preferred initial therapy. If instead there is high PD-L1 expression, then immunotherapy may be considered, although the response rate tends to be significantly lower than that of the targeted therapies used for genetic mutations, so your oncologist may prefer to begin with standard chemotherapy.

Please let us know if you have further questions.

JimC
Forum moderator

masalovai
Posts: 43

Thank you JimC for your prompt reply.

My question is: what is the most effective way to use targeted and immuno drugs as the first line therapy?

What are best options to use them alone and in combination with other drugs. I would like to be prepared for the day I will receive results.

I learned from Dr. West’s review about different combination of drugs suggested for the first line standard chemo, but there are no targeted or immuno drugs mentioned. As I understood from the same review , that combination of drugs are more effective than single drug.

Many thanks
Irina

JimC
Posts: 2753

Hi Irina,

Initial treatment with standard chemotherapy is most effective when a combination of a platinum agent (carboplatin or cisplatin) and another agent is used. Targeted therapy and immunotherapy are usually single-agent, although clinical trials have been testing combinations of immunotherapy agents with some promising results.

JimC
Forum moderator

masalovai
Posts: 43

JimC,

If I understood you right, targeted therapy could be used in the first line if certain mutation has been found , but immunotherapy is usually used as the second line therapy following standard chemo...?

masalovai
Posts: 43

JimC, sorry for so many questions.

If I need to start with standard chemo, which combination of platinum and partner could be suggested for my case?

Thank you
Irina

JimC
Posts: 2753

Hi Irina,

As far as starting with immunotherapy, that is an option that can be discussed with your oncologist. One factor which leads some patients to choose chemotherapy first is that it takes a bit longer for immunotherapy to show results, while if chemo is effective it tends to show results pretty quickly (usually on a scan four to six weeks after starting it and/or a marked improvement in symptoms). But if your cancer isn't progressing rapidly and you aren't experiencing significantly worsening symptoms, then the delay is acceptable. Plus, if you start with immunotherapy and it isn't effective, you can switch to chemo.

There are various agents used in combination with platinum. Alimta (pemetrexed) is a popular choice because most patients tolerate it very well, and it doesn't tend to cause hair loss. Other choices include Taxol (paclitaxel), Abraxane, gemcitabene (Gemzar) and vinorelbine (Navelbine).

JimC
Forum moderator

catdander
Posts:

Hi Irina,

Welcome to Grace. I’m so sorry about your diagnosis. Yes you’re right, if a targetable mutation is found such as EGFR, ALK or ROS1 a targetable drug is the 1st line drug of choice. Though rare a high PD-L1 expression is found along with a targetable mutation, in that case the targetable drug is still the 1st line choice.

However if there is no targetable mutation but a high PD-L1 is found then most oncologist prefer to start with an immunotherapy since some have been proven to provide longer lasting efficacy and standard chemo and normally with fewer side effects. One reason to start with chemo instead of immunotherapy is if you need a quick result now then chemo is more likely to give quicker results.

If there are neither high expression of PD-L1 or targetable mutation then chemotherapy is used as 1st
line. Carboplatin instead of cisplatin is most often used for those with stage IV disease. There is no absolute data stating cisplatin is better but it does definitely cause more side effects. Alimta is most often the second drug in this combo. Alimta has fewer side effects and at least as good as the taxanes. So the combo of choice is usually Carboplatin with Alimta for 4 to 6 cycles followed by a break or continuing with alimta alone.

There are also some promising trials for other mutations that may be appropriate for 1st line. Jim mentioned also combinations of immunotherapies being tested that are showing lots of promise. If you think you might be interested in any of these then it's important to review your options with you oncologist before starting first line therapy or any next line of therapy. With that in mind. If your oncologist isn't a lung specialist at a large teaching/research center it might be a good idea to get a second opinion during your "transition" times (before making changes in treatment).

I hope this is helpful.
All best,
Janine

masalovai
Posts: 43

Hi, Janine

I am very grateful to you for such clear summary of treatment. I have done quiet comprehensive literature review and arrived at the same treatment scheme.

I am going to take it to my next appointment with my oncologist for discussion.

I also agree that the second opinion could be helpful.

Many thanks again and all the best

Irina

masalovai
Posts: 43

Thank you very much , Jim for all advices.

I feel much better now and ready to speak to my oncologist about different options.

I am very glad I found this site.

All the very best
Irina

catdander
Posts:

Re 2nd opinion. Cancer treatment has become and continues to be more complicated each day and each type of cancer has it's own set of rules and subsets. For this reason many people including medical oncologist who treat many types of cancer find it helpful to get a 2nd opinion at transition times. I don't want you to think you should get a second opinion but if there are questions about the direction you should take it can be very helpful.
The following link is perennial favorite of mine. http://cancergrace.org/cancer-101/2011/11/13/an-insiders-guide-to-the-s…

masalovai
Posts: 43

Thank you for very valuable suggestions.

I have my results and there are no mutations except of EGFR wild. Is anyone here has similar situation ? Can doctors advice treatment options ?

I also have two needle biopsy,but there was not enough material for PD-L1 marker and I have partial lung collapse during the second procedure just one week ago. Now my oncologbist suggests open surgery biopsy for PDL-1. I am afraid that my treatment will be delayed again due to recovery time after operation .

Could you please advice......

JimC
Posts: 2753

Hi Irina,

I'm sorry that the biopsy did not go well. The question of whether to wait for additional testing before choosing an initial treatment plan is a difficult one for many patients, who quite understandably are anxious to start their cancer treatment as soon as possible. There isn't a clearly right or wrong answer. As a practical matter, though, once a lung cancer is stage IV, a delay of a few weeks is usually only significant if there is evidence of rapidly progressing disease. And if a finding of high PD-L1 expression leads to the choice of immunotherapy and that therapy is effective, then you will have avoided the usually more troublesome side effects of chemotherapy.

JimC
Forum moderator

masalovai
Posts: 43

Thank , Jim for your reply. I think, I can’t wait for another three weeks to wait for PD-L1 results. I had two needle biopsies. Second one for mutations and pd-l1, but no success. They could get enough sample and I have partial lung collapse during procedure. Now is only way to get enough sample is open surgery biopsy which course more delay for my treatment because recovery.

My cancer is quiet aggressive type, poorly differentiated adenocarcinoma . Probably the best way for me to start with Cisplatin or carboplatin...? What to choose? Plus Alimta plus Avastin .

Than to get Keytruda as second line. Having poorly differentiated and EGFR wild type tumor I probahave a chance to have high pd-l1 expression.....

I mast not sure if pd-l1 factor can be different after I have chemo. As I’ve learned it is dinamic but not absolute parameter.

Thanks again for your time to answer my messages.

masalovai
Posts: 43

I jest not sure , probably to do radiation together with chemo .....?? Will be more effective ??

masalovai
Posts: 43

Is anyone on Cisplatin Alimta Avastin? What side effects do you have? Any tips?

I am from Cape Town, South Africa. Is anyone here from South Africa?

JimC
Posts: 2753

Hi Irina,

Starting with standard chemotherapy with a plan to switch to immunotherapy if necessary is a perfectly reasonable course of action which many patients choose to follow. And though PD-L1 expression can change for a small subset of patients, such a change is not typical.

The combination of a platinum agent such as cisplatin or carboplatin plus Alimta and Avastin is a very popular and effective regimen. Alimta tends to be one of the best tolerated chemotherapy drugs available, and for most patients Avastin is also. There is a never-ending debate among oncologists over the question of cisplatin vs. carboplatin. There is evidence that cisplatin is a bit more effective than carboplatin, but it can come at a cost, as cisplatin is often more difficult to tolerate (although you can find patients who sail through cisplatin and others who struggle with carboplatin). Many oncologists feel that in the stage IV setting any added benefit conferred by cisplatin is not worth the additional toxicity, since a chemotherapy regimen that you are able to finish as scheduled is better than one that you quit due to side effects. Dr. West discusses the two drugs here.

JimC
Forum moderator