Recurrent Adenocarcinoma is now Stage IIIB

[rdflynnjr]

So I was scheduled to begin radiation on 11/18, but the week before, I reported pain in upper chest and back and some dysphagia along with a cough. A PET scan revealed a new lymphadenopathy above my clavicle. Also a suspicious mass-like growth above and adjacent to the very hypermetabolic subcarinal lymph node. Radiation and chemo are delayed now until Monday, 11/25 because they are having to reprogram the radiation therapy machine.

I'm not looking for sympathy. I'm just sharing. Hopefully I will have something better to share in the future. Something that promotes hope.

Thank you all for sharing also.

Rick

[Denzie Moderator Volunteer]

I’m grateful this happened before radiation started. Otherwise it would have been left for a couple months after radiation ended. So as much as it sucks this worked out in your best interest. The chemo might have taken care of it but hitting each lesion with both will destroy more. There is a synergistic affect that destroys the cancer faster.

When they confirmed progression did they send the biopsy in for genomic testing? What did they learn? What chemo agents will they be giving you? Will they include an immunotherapy?

[rdflynnjr in reply to Denzie]

Moffitt did a biopsy of station 4R LN and pathology confirmed it to be adenocarcinoma. Still waiting for results of genome testing.

VA folks biopsied station 7 (subcarinal) LN and pathology stated the following:

Immunohistochemistry performed with appropriate controls show

adenocarcinoma positive for Cytokeratin 7. The CDx-2 and Ber-Ep4

show weak staining. The p40, CK5/6, TTF-1, CK20, Napsin-A and TAG-72

are negative.

Carboplatin + paclitaxel are the planned chemo agents. Durvalumab is the immunotherapy agent to be given every two weeks for a year assuming the chemoradiation results are favorable.

Rick

[Iamready]

It looks as if Denzie gave some good advice as to why they are taking this route. Although it is really hard to wait, especially after you have already mentally prepared yourself for the next phase. Hang in there! Our prayers are with you as you go through this difficult time

[rdflynnjr in reply to Iamready]

Thank you.

[Lyubov]

Terrible, yet as Denzie, et al, point out the treatment can be geared to treat appropriately. Keeping you in my thoughts & prayers.

[rdflynnjr in reply to Lyubov]

Thank you.

[Gatorb8]

Hang in there Rick. I too am glad that you saw this before radiation began. Hopefully they can zap all of these at once. The biomarker test will be key to see if immunotherapy or targeted therapy can help. The radiation does sound like a first step. Good luck and keep your spirits high!

[rdflynnjr in reply to Gatorb8]

Thank you.

[Sylw]

Good Luck to you Rick! I'm on the same treatment plan

[rdflynnjr in reply to Sylw]

Thanks and best of luck to you!

Rick

[ThePurplePlace]

Rick,

Sorry that you have the delay, but as the others have already pointed out, it's better to learn this now that to have done the radiation and find out there were not targeting the correct areas.

Do you have to have "Chemo" before you can go on Imfinzi, (Durvalumab), if not, I'll ask if I could start with that first. In my case (Stage IV) I had a better response to Immunotherapy and for many it can be easier to tolerate than chemo. Of course, it's your choice, but something I would consider, if you have that option.

Wishing you the very best,

Lisa

[rdflynnjr in reply to ThePurplePlace]

Lisa,

It seems that the NCI guidelines are for chemoradiation to be the treatment of choice for unresectable stage IIIB NSCLC with immunotherapy followup. If someone can steer me to evidence for a more effective treatment, I will definitely talk to my oncology team about it.

Wishing you the best also.

Thanks,

Rick

[ThePurplePlace in reply to rdflynnjr]

I wasn't aware of that, which I why I asked.

I just looked up some information on their website and it does appear that it's used as a second-line treatment after chemo or a combination of chemo and radiation.

Another tool to add to the toolbox.

Lisa

[rdflynnjr in reply to ThePurplePlace]

Yes, there are many tools available in the tool box. It's disappointing, though, that there is so much trial and error involved in their use.

Sorry, don't mean to be negative.

Rick

[ThePurplePlace in reply to rdflynnjr]

Oh I totally understand and felt the same way ! This is such a tough illness and I wish we all had a better way to know exactly which treatment would give us the best possible outcome. I do HOPE you will do well with whatever you choose.

On the upside, it's also good to know there are more options available for a later time...as long as we have options, that's always a good thing.

Good luck, hope you treatment goes well this week.

[rdflynnjr in reply to ThePurplePlace]

Yes, options are good to have. Thank you. All of us here need to hang on to HOPE.

Rick

[e-string]

I was originally diagnosed stage 3b and had chemoradiation followed by 6 Durvalumab (Imfinizi) infusions. I was taken off the Durvalumab because of pneumonitis, but at that time I was NED. This has been an effective treatment for me at least. Unfortunately, they discovered a new nodule in my opposite lung this summer and had to have surgery for that. Hoping things quiet down for a while. Wish you good luck with your treatment.

[rdflynnjr in reply to e-string]

Hoping with you that things quiet down for you. Thank you for sharing your experience and your good wishes.

Rick