Mayo Clinic Wait Times for appointments

[Kamoto]

Oncology called me.  July 16th is my initial appointment.  Sheesh, I'm thinking I'll be dead by then.  They prioritize appointments based on the case, so either I'm not so bad, or I'm a goner soon.  I know these hospitals want those foreign cash payments, but why do we have to share out healthcare system with the rich around the world?  Really irritates me to read Tik Tok people critical of US healthcare, when the elite of their society run to the US whenever they need a complex procedure. 

[Tom Galli]

Kamoto,

I'm sorry about your med onc appointment delay. While waiting, you might try a consultation with a radiation oncologist at your hospital. They treat our disease also and they may be more available than a medical oncologist. This also has the advantage of getting into the hospital system sooner and the "rad onc" might be able to bump up your medical oncology appointment.

No matter where in the world (and I've seen a lot of it), people complain. It just seems to be a human characteristic. Social medial accelerates the complaint pace, but I don't think it improves veracity. 

Stay the course.

Tom 

[LouT]

Kamoto,

Waiting can sometimes be the hardest thing to go through.  Tom nailed it though, seeing a RO could move things along better for you.  Please keep us updated.

Lou

[Kamoto]

I see the local oncologist on Monday.  Mayo is pretty adamant, no treatment though which isn't authorized by them.  I guess this would eliminate me from any drug trials.  My tumor score in the lung was 5%.  So maybe that is why I'm not high priority on the list.  That seems to be a good thing. 

[Kamoto]

So the bio marker is back.  I’m EGFR.  So oncologist wants to start Tagrisso.  This isn’t chemo, and it isn’t immunotherapy.  However it’s toxic after a year and the cancer figures a way around Tagrisso anyway.  So this seems like just a delay mechanism.   Another complication came in after endoscopy.  I have a fairly large esophageal tumor right before it enters the stomach.  Lung is rare to metastasize to esophagus.  So this possibly means two origin cancers are present.  Huh?   How can that be.  They will send for mutation testing as well just in case it is the same cancer.  

[Susan Cornett]

Kamoto - there was a tumor on my thyroid per the PET scan. I was told it was rare for lung cancer to metastasize to the thyroid. Ha! I had metastatic lung cancer in my thyroid AND thyroid cancer. Fortunately surgery addressed the thyroid issue. It's never boring, is it?

[Karen_L]

Kamoto,

I just received the biomarker testing for nodules in my thyroid. Luckily, no action needed, but we'll continue to watch it. I guess we just hit the cancer jackpot? 

What's your EGFR specific marker? I have L858R on Exon 21 and S768i on Exon 20. One's kind of typical, one's pretty rare-- yippee for me. 

Tagrisso is a TKI- tyrosine kinase inhibitor. It interrupts the floodgates that signal the cancer cells to grow grow grow. It's actually a miracle drug. Not sure where you're getting you're 10 month info-- some people are on it for years and years. Yes, sometimes that smarty-pants lung cancer can figure a way around it or develops resistance, but there are trials in place for new drugs to respond to that situation-- 4th generation TKIs. (I forget the name, but I just read about it.) Best thing about Tagrisso is that it crosses the brain barrier. That's nice, since the brain is a favorite place for lung cancer to travel. 

Glad you have a regional onc visit scheduled. Mayo could be a great resource for as second opinion/review of whatever treatment you may start locally. It's not like your doc is pulling a treatment out of thin air-- there are national protocols for treatment. Go to ncc.org and look for info on your type of cancer. It's pretty helpful. 

Best,

Karen

[Kamoto]

No Susan it isn't.  Now I wait again for the bio marker for the Esophagus tumor.  Karen, once I see the result posted to my Sanford Chart I'll let you know.  So I'm getting my data from here.  https://www.tagrissohcp.com/efficacy/metastatic-nsclc-efficacy.html.  The data from the trials show at 3 years, 54% of TAGRISSO patients and 44% of EGFR-TKI comparator patients were still alive.  So makes sense when you say some are on it for years and years.  I hope I react well to be in the survival group. 

Does anyone Tik Tok their adventures?  I'm 57 but very computer savvy, and I've been documenting my adventures on Tik Tok.  I'm getting about 800 views of videos which isn't bad for an old guy.  I think I need to shed a tear or two to break into the thousands of views

 

 

[Karen_L]

I'm pretty tech savvy too, but I've stayed away from Tik Tok. Your series may push me into new territory! How do we find you?

 

[Judy M2]

Kamoto, what is your EGFR mutation? Mine is Exon 19 deletion. I've been on Tagrisso for 27 months (after chemo and radiation) and am NED. I don't know where they get this stuff about Tag being toxic after a year. Yes, eventually cancer finds a way around Tag, but you could be on it for years and by then they'll have developed a 4th generation drug. 

If you're on Facebook, this private group has lots of information:

https://www.facebook.com/groups/2098822473719352/?ref=share

Everyone is different, and some people get longer results than others. I hope you get great results.