GEJ Cancer Bone metastasis

@jcrs, I'm tagging @jmp1514 and @davidwrenn, who have also written about bone metastasis. And also tagging @snickers124 @mason1616 and @bethm71 who have experience with gastroesophageal junction (GEJ) cancer.

JCRS, you asked about photodynamic therapy, which can be used in some patients with esophageal cancer. Read more about it here:
- Photodynamic therapy Mayo Clinic https://www.mayoclinic.org/tests-procedures/photodynamic-therapy/about/pac-20385027

Have you considered Mayo Clinic for a second opinion?

Thank you for getting back to me Colleen!!
We have not had a 2nd opinion at Mayo, we did had at Sanford University here in CA.
Next year we're planing to move to the East coast to be close to family and closer to the Mayo Clinic Jax. So he will have more treatment options.
Will be a lot of planing involved, but we are working on it.
I just hope moving will be realistic option at the time.

Kind regards.

Unfortunately, the last two days his pain has increased considerably.
I was wondering if will get better after a few rounds of chemo or will get worse as the disease progress?

I am sorry to hear that your husband has experienced d'Italia metastasis to bone. I experienced the same phenomenon after several rounds of FOLFOX chemo therapy. I was able to tolerate 3 infusions ok Keytruda before suffering catastrophic adverse reactions. The clinical plan was to do repeat scans to see if there were any effects on the bone metss and if not to pursue a lesion-targeted radiotherapy regimen. Fortunately, my repeat scans following my limited therapy with Keytruda showed a good clinical response with respect to my bony lesions.

I believe you said your husband was deemed ineligible for immunotherapy. Did his care team rovide an explanation for withholding qthese therapeutic agents? If not, I would ask them to do so. If he is truly clinically ineligible to receive immunotherapies then targeted radiation therapy is a potentially viable option. Not only may it be effective in reducing or eliminating bone metastasis but also may help with reducing related bone pain. I would also suggest that you request a consult with a pain management specialist to help find an effective pain management regimen that might help with his daily pain burden or pain breakthroughs that may occur on his current pain management regimen. There are a number of options that might be considered including several THC cannabanoids which in addition to controlling breakthrough pain also help with controlling nausea and appetite stimulation.

I also note that you are currently on the west coast and your husband is receiving care through a Stanford affiliate. Stanford is an excellent academic medical system and their Oncology programs are among the top rated in the country. That said, it would behoove you and your husband to seek second option re his case and therapeutic options. It seems that you are in the process of doing so at Mayo's Jacksonville facilities. They're an excellent organization with particular expertise in the medical/surgical management of esophageal carcinoma. I wish you both the best in your on- going battles with this dreadful disease. It's critical that you both adopt a warrior's mentality in confronting challenges ahead. A positive mental attitude and recovery to own the disease and not let it own you is, while difficult at times, critical going forward. Both of you should educate about esophageal carcinoma and current available therapies as well as those in development. Knowledge is power!

Hello,

Thank you for your comments. My husband is been treated by Kaiser Permanent, Sanford is the 2nd opinion, that agrees with the treatment at Kaiser as the " First line treatment".
He is clinically ineligible to immunotherapy. Below the explanation:

CPS score. This score should be greater than or equal to 5, this result indicates a higher response. Your CPS score was 0, meaning that the specific immunotherapy target was not present per the molecular testing of your cancer. Your cancer was also tested for a specific feature called microsatellite instability / DNA mismatch repair.
Tumors with this feature respond to immunotherapy. Your cancer did not have this feature.

Sanford also lined up other future therapies that he could use as a 2nd line treatment.
We are in the beginning of this journey and learning a lot about the disease and therapies every day to be equipped the best I can to talk to the doctors.
Well said when you say that keeping a positive mentality is the most important !! Hard sometimes for sure.
Thank you!! Keep you post it.

I apologize for typos and inappropriate word substitutions in my prior response. I have MS and psoriatic arthritis in addition to my cancer. This makes typing a bit problematic thus I've been using a dictation software app to compose and edit my emails and texts. As you can see the results are less than perfect. Even though I proof read the documents/responses before I hit send the apps editing and word suggestion function at times ignores or overrides my edits and corrections. This is tad frustrating and often comical.

Hi David,

You don't have to apologize, English is my 2nd language you will see a lot of mistakes in my comments too !! lol.
You are a inspiration to us !!