kst

You will be in good hands with Dr. Diab and his NP Natalie. I have been under their care for 2.5 years now. Hopefully you will help make another treatment option available for all of us. Thanks..
Susanne

At my previous employer (Large Bank) the long term disability insurance company would sign you up for SSDI immediately after your last paycheck. After the 5 month wait to receive benefits from SSDI the combination of both checks would equal 60% total pay. You will be eligible for Medicare part A and B in 2 years and 5 months from your last paycheck unless you return to work. Keep in mind I had to blow the dust off of my 5 year old HR manual so things may have changed.
You will be eligible for Cobra benefits for 18 months after your employer sponsored health insurance ends. I would advise you to continue on Cobra as long as possible-usually it is the same price as ACA with much better hospital and doctor options.
Susanne

If the previous biopsy was not performed at MDA they may also need a biopsy to perform a gene analysis. I had this happen when my slides were not handled correctly from my local hospital lab. They look for BRAF, NRAS, and many other mutations along with PDL-1
Susanne

I ended up in the hospital for a few days from AE’s related to Nivo only monotherapy. Because I had myocarditis along with colitis they withheld infliximab for several days until my heart inflammation went down and I only received high dose steroids. They gave me infliximab after 7 days and the colitis disappeared completely within a few hours.
Susanne

I had similar AE's occur after 10 doses of Nivo monotherapy.  Still NED 1 year after discontinuing treatment.  Here is an abstract from ASCO 2018 that explains response rates, RFS, and possible retreatment if recurrence happens.  My doc stated he would not hesitate to restart Nivo if progression occurred and AE's were under control-but not until then.

Susanne

https://meetinglibrary.asco.org/record/163559/abstract

 

 

Stage 3-C resected melanoma should be 1 year of treatment.  That is the standard of care used in clinical trials.  Sometimes the insurance company will pre approve for only six months and then send another approval later.  I will bet the docs will get it worked out..

Susanne

I have scans every 3 months for 2 years after my treatment ended.  Insurance should not be an issue.  MRI yearly.

Susanne

I am about 3.5 hours away near Tyler. The travel is a minor inconvenience for me.
After resection surgeries and radiation I received Nivo from 10/17 to 03/18 until I had severe IRAE’s from the treatment. Treatment was stopped at that point. Everything clean since.
Susanne

Glad to see you back Ed.
Susanne

I set up scans and bloodwork for 6:00 am. I am usually finished by 9:30 if they combine my scans. MDA is a busy place and most doctors are always behind schedule. infusions can be scheduled for late in the day also if needed.
If your company has more than 20 employees, make sure HR is aware of your issues. Let them know you will do everything possible to meet your work requirements. If the company has given an exception to another employee in the past but terminated you they are skating on thin ice no matter their procedures. No manager wants to get a letter from the EEOC, much less deal with discovery, depositions, and a federal judge who would let his own employees off for treatment if they were in your shoes.
Remember that your health comes first. It’s hard to pay the bills and support your family if you are dead.
Susanne

After removal of my primary in my left ear canal with positive snlb in June 2017, I had a complete lymph node dissection that included positive parotid nodes. I was given 5 doses of IMRT @ 6gy over 10 days to reduce the chance of recurrence in my facial area. I then received Nivolumab for 10 doses before IRAE’s stopped treatment. I had skin burning, sores in mouth, and loss of hair but it stopped at the end of treatment. So far still NED after 2 years. At the time, one of my doctors suspected combining radiation with immunotherapy increased response rates.
Susanne

Question about overall survival. Those who took ipi-nivo for first line tharapy achieved 52% 5 year survival. Those who took nivo only had 44% 5 year survival even if they progressed and then took ipi-nivo or targeted therapy? Does taking ipi-nivo first line only give the 52% overall survival?

Susanne

Mike,
Having worked for a large corporation in upper management for years I can give you a few words of advice.
1-Call Dr. Hamid and get an appointment-pay out of pocket. All you need is for him to put a plan for treatment together in writing. If you have that it proves Kaiser failed to provide reasonable treatment. This opens Kaiser up for legal action.
2-Set up a Go Fund Me account with an explanation of what Kaiser doctors are offering compared to Dr. Hamid out of network. Let everyone know when it is set up and I will donate and I am sure others will also. Make sure everything stated is accurate. Even notes from conversations by phone need to be saved. I can assure you Kaiser records all calls.
3-Contact a well known attorney with the email received from the doctors office. Lawyers live for this. They usually have contacts at the local media and are experts at making corporations look bad. After a couple of phone calls I expect you will have your referral. After reading your last few posts I can’t believe it has gotten this far. Kaiser will cringe when your lawyer provides a detailed account of their actions. I can’t tell you how many people I have terminated over the years for minor issues compared to this.
When an attorney contacts Kaiser they will get a response from the legal department the same day. They get to avoid all of the red tape and being put on hold. The legal department at Kaiser will want this story to disappear.
Wishing you the best,
Susanne

I am not sure a SNLB is still needed after recurrence. You should be stage 3A already unless I am missing something. That means other treatment options are available such as targeted therapy or PD-1. I would assume at this point that only nodes that light up on scans or ultrasound would be removed.
Susanne