Olymphians w/ surgery advice/experiences??

[jep]

Hey Jep — did you guys consider proton beam or SBRT (Cyberblade)?

No, this is the first time I’m hearing these terms....I did look them up and I will share this info with my husband.
Thank you,
jep

[Achilles Torn]

My lymph node spread is more extensive, but I did meet with a surgeon who seemed confident he could remove para aortic nodes if the spread were limited to that region. It sounds like this is the case for your husband which is good news. All surgical procedures carry risk so it's normal to worry. Based on what I can read hear I'm optimistic you will have a good outcome here.

Keep us posted
AT

[Siti]

Hey Olymphians,

I read this and it looks very promising. Anyone any thoughts?
How about those of you from Japan?

MetastaticEquilibria

Micro-CT scan : https://www.tohoku.ac.jp/en/press/lymph_nodes.html

Lymph Node Targeted Therapy:
https://researchoutreach.org/articles/l ... r-therapy/

Do you think they’re going into trials soon?

[MetastaticEquilibria]

Hey Olymphians,

I read this and it looks very promising. Anyone any thoughts?
How about those of you from Japan?

MetastaticEquilibria

Micro-CT scan : https://www.tohoku.ac.jp/en/press/lymph_nodes.html

Lymph Node Targeted Therapy:
https://researchoutreach.org/articles/l ... r-therapy/

Do you think they’re going into trials soon?

According to your second link, they are planning Phase 1 trials of the lymphatic chemo delivery system, but no time line is given. Contact info is given for the leader of this research, Prof. Kodama at Tohoku University, so you could conceivably send him an e-mail asking about how soon trials may commence.

My guess is that the timing is unlikely to be soon enough for your needs, though. As I understand it, Phase 1 trials are only for testing the safety of a new treatment, not the effectiveness, which doesn’t get directly addressed until Phases 2 and 3. (But note that I’m not in the medical field, and could have this mixed up or misremembered.)

[Siti]

According to your second link, they are planning Phase 1 trials of the lymphatic chemo delivery system, but no time line is given. Contact info is given for the leader of this research, Prof. Kodama at Tohoku University, so you could conceivably send him an e-mail asking about how soon trials may commence.

I have written to that email yesterday. Let’s see if they reply. I noticed a lot more work on lymph node metastasis coming out of Japan and Korea than the west. I’ll continue to look for answers.

[MetastaticEquilibria]

According to your second link, they are planning Phase 1 trials of the lymphatic chemo delivery system, but no time line is given. Contact info is given for the leader of this research, Prof. Kodama at Tohoku University, so you could conceivably send him an e-mail asking about how soon trials may commence.

I have written to that email yesterday. Let’s see if they reply. I noticed a lot more work on lymph node metastasis coming out of Japan and Korea than the west. I’ll continue to look for answers.

Let us know if you hear anything. Note that it is Obon in Japan now, so he may not be checking mail very regularly for the next week or so.

[Siti]

Hey everyone -- The lab admin has replied, stating that they're going to trial next year and those who are interested to participate can watch for the announcement dates on their website. I am not certain which trial phase they are in, I have enquired and will get back to you once I get an answer.

[MetastaticEquilibria]

Good that you heard back.

[jep]

Hey everyone -- The lab admin has replied, stating that they're going to trial next year and those who are interested to participate can watch for the announcement dates on their website. I am not certain which trial phase they are in, I have enquired and will get back to you once I get an answer.

Thank you for looking into this Siti!! Please keep us posted...
jep

[Siti]

Hello Jep,

This is the reply I got from Kodama admin:

The clinical trial that we plan is on lymph node metastasis treatment using the lymphatic drug delivery system (LDDS). In Japan, our laboratory is supposed to be at the forefront of the research on treatment targeting lymph nodes. Therefore, we are very sorry to tell you that we don't have any more info with regards to lymph node metastasis treatment in Japan.

——

Perhaps you could keep an eye on the trials when they announce it next year on their website? They’ve been testing this since 2016 with promising results and they’ve also received a grant to proceed. Though it would be in phase I.

Siti

[jep]

Hey Jep — did you guys consider proton beam or SBRT (Cyberblade)?

My husband's oncologist has suggested something that sounds like SBRT . . . intense/targeted radiation given in 5 sessions . . . I will double check with him, but it sounds exactly like SBRT . . . I've read that the "Proton Beam" is only for solid tumors (not cancer that has spread to other parts of the body) . . . not sure about that and will have to research a bit more . . . I will definitely be keeping an eye on the possible trial coming out of Japan . . .
Thank you!!
jep

[Rock_Robster]

Hey Jep — did you guys consider proton beam or SBRT (Cyberblade)?

My husband's oncologist has suggested something that sounds like SBRT . . .

Also often referred to SABR so could be that.

Good luck!
Rob

[jep]

Hey everyone....just a quick update on my husband’s LN situation. The surgery did not go as planned and the lymph nodes are not resectable....one is even wrapping around (and slightly compressing) his vena cava....we met with his onc at MSK today and she is very optimistic about radiation (the cyberblade that was mentioned earlier in this thread). She also recommended a clinical trial....so happy to have some options on the table! She feels that radiation can be done now or later, but that the clinical trials aren’t always available; therefore, my husband should really think about how he would like to proceed. She suggested meeting with his radiology oncologist to discuss long term effects....2 more appts in the next week or so, and then important decisions to be made...the highs and lows of this madness are really overwhelming....thank you for the support over the past 2+ years <3

[Siti]

Glad to hear there are options and that my small input was able to help a little.

What would the trial entail?

Wishing your husband the best outcome and stay strong, Jep! You’ve been amazing.

[jep]

Hi Siti!
The trial is a combination of Temozolomide and Nivolumab. The Temo is a pill and the Nivo is an injection (once every 2 weeks, I believe)....still not sure if my husband qualifies, or if this is the direction he wants to go.....cyberblade radiation sounds very promising as well....tough choices brewing.....