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Things have taken a turn for the worse.

BDS's picture
BDS
Posts: 172
Joined: Aug 2012

In March 2014 I met with Doctor Hans Hammers at John Hopkins University Hospital to discuss treatment options. Doctor Hammers said something to me that I have never forgotten - “That once I stopped treatment, I would be taking the brakes off your cancer”.  My March 15th scans revealed a liver lesion in the right posterior segment of the dome which measures 2 X 1.6 cm. Due to Progression of disease I was removed from CB-839 / Everolimus (Afinitor) clinical trial. As protocol requires I was placed into a four week wash out period. For all of the month of April I did not feel well at first they thought it was an infection but when the infection cleared up I still was not feeling well - HUP ordered new scans.  The results are far worse than even my oncologist imagined. . In January’s scan my lungs were 99% clear and free of cancer (I had one stable fat lymph node) today I have over hundred enlarged nodes that are cancerous. I had one tumor on my liver on the last scan now I have fifteen along with other lesions in my abdomen. In short, during the four week wash out period my cancer spread like wild fire. So after working for 33 years for my employer I have filed my retirement paperwork. It’s time to go and take enjoyment in whatever time I may have left.

 

PS – I am recently starting treatment with Nivolumab and due to recent events my oncologist has added Axitinib (Inlyta) to the mix. But the goal is to really treat me with Nivolumab and Ipilimumab. However, my insurance company is giving my doctor a hard time about getting this drug off label.    

 

Wish me luck - BDS

 

Jan4you's picture
Jan4you
Posts: 1322
Joined: Oct 2013

My goodness what a kick in the ____!!! So sorry for this sudden change.

But please know I and others here will be at your side for whatever you may need! My heart is breaking for you and yours. Hope you find some relief in these miserable symptoms and can find some goodness in your retirement. Still..

In the meantime, let me send you CALM in the eye of the storm, peace of mind kind of calm. No one likes uncertainty.

Sending you loving, caring hugs,

Jan

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

That news sure is a kick in the pants and lots of other places. Sorry to hear this. Retirement to be doing good things sounds like a good thing at any time.

May the new mix work, and the physician and insurance company work things out with the additional drug. All the best... Keep us posted. 

sandy23
Posts: 137
Joined: Jan 2017

Do you ever look at the smartpatients.com forum?  There is a member of that forum that had so many lesions that her report just read "too numerous to count".    That was 13 years ago and she is doing fine today.  I will try to find her name and let you know.

BoondockSaint's picture
BoondockSaint
Posts: 241
Joined: Mar 2017

I hate so bad that you have gotten this kind of news. Like others above have said......keep digging, and hopefully you will get some relief from feeling so bad.

im curious tho......and it may just be none of my business and that's fine. Why did the Dr. Stop the treatments knowing it would as stated "Take the brakes off"??

big hugs from us.

daisybud's picture
daisybud
Posts: 461
Joined: Jan 2016

Wishing you lots and lots of luck with the new meds.

Kim

 

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

most of those tumors won't last long once you start nivo. Especially in combo. Don't be surprised if it gets painful at times. You'll feel some tumor flares when they get attacked.I'm pulling for you BDS. I have faith.

Max57's picture
Max57
Posts: 160
Joined: Mar 2015

You are in my prayer ... may God be with you through this 

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

I'm hoping that Fox is right, so good luck!

Steve.

Retcenturion's picture
Retcenturion
Posts: 240
Joined: Mar 2017

BDS, you and your family are in our thoughts and Prayers.

 

 

ACS1957's picture
ACS1957
Posts: 12
Joined: Oct 2016

Praying for peace and for the treatments effectiveness.

 

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

Man, That's got to be a shocking conversation with the doctor.

It kind of struck home, because I'm currently on a study that includes CB-839.

It also, though, includes Nivolumab. I just had my first set of scans, and the Nivolumab is working! My tumors haven't shrunk (mostly bone mets), but they haven't grown, either.

I've only ever been on two treatments: Votrient, which didn't work for me, and the Nivolumab/CB-839 trial which is working for me. I credit the Nivolumab.

I know that results differ, but I have a really good feeling that Nivolumab will work for you.

APny's picture
APny
Posts: 1949
Joined: Mar 2014

That really sucks, BDS. Keeping fingers crossed that the combo kicks those new growths in the a$$. All the best to you; I'm so sorry you got such crappy news but I'm optimistic the new approach will work.

lobbyist0724's picture
lobbyist0724
Posts: 389
Joined: Sep 2016

Good luck BDS, all the best. The combo+positive mindset will work!!! You have to believe it yorself!

angec's picture
angec
Posts: 923
Joined: Mar 2012

BDS, wow, sorry to hear this.  I am with Fox, i am betting that the new comination is going to work wonders. I also don't understand why they insist on giving a wash out period. I would suggest to anyone not to let their doctors talk them into that.  Also, it seems strange that in that short amount of time you have so many nodes showing up.  That sounds like it might be some sort of infection or reaction.  I am praying that the new meds work and things return back to stable for  you.  Always enjoy your posts here and the encouragement you share.  Keep your chin up, keep  positive and have fun in retirement. When do you start treatment?  Hugs, prayers and positive thoughts.

BDS's picture
BDS
Posts: 172
Joined: Aug 2012

I would just like to thank everyone for their thoughts and prayers. I really needed the inspiration. 

PS – To answer BoondockSaint question it is generally standard protocol whether it be a clinical trial or FDA approved cancer drugs to have a wash out period between starting a new treatment. This is done to reduce the risk of a severe side effects from occurring. In most cases the patient feels better and more like there old self but in my case my cancer spread like wild fire.   

 - My insurance company Aetna has denied my claim to receive Ipilimumab off label. If there are anyone out there who have been able to receive Ipilimumab off label after an insurance denial. Please let me know how you did it.     - BDS 

 

 

 

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

BDS, so your docs want to treat you with a combination of Nivolumab and Ipilimumab, but Aetna considers Ipil to be experimental in treating RCC?

Why do your docs want to go this route? I'm assuming it's not considered an official clinical trial, or the trial sponsors would be covering some of the costs (my trail sponsors are, now, covering both the Nivolumab and the actual trial drug, CB-839).

If I'm wrong and this is an official, clinical trial, I would go at it through that angle: ask  your study coordinator to see if the sponsor will cover the cost of the Ipil, since it is experimental.

Best of luck, and if the Ipilimumab portion falls through, I would still ask your oncologists to put you on Nivolumab. I have a lot of faith in Nivolumab.

Jan4you's picture
Jan4you
Posts: 1322
Joined: Oct 2013

Oh no!! Can't your doctor put in a word for you personally? I know its usually a RN casemgr that does the insurance authorizations. ASK your doc ok hon?

Here for ya~

Hugs, Jan

BoondockSaint's picture
BoondockSaint
Posts: 241
Joined: Mar 2017

i hate that you are having problems with the Ins. It's not like there isn't already enough to deal with.

Also, thanks for the clarification on the "washout" explanation, I had no idea.

many thoughts and prayers for you and here's to the new treatment kicking things in the tail and to you getting some relief.

beemurguia's picture
beemurguia
Posts: 57
Joined: Mar 2017

Dear BDS, I am so sorry about the sudden change in your prognosis.  I felt a kick in my gut as I read your post.  I hope that you are enveloped in calmness and good support.  Why some of us get diagnosed early enough or later is that part that behoves me.  Please go and do the things that brings you serenity and joy.  My heart goes out to you. I am recovering from my nephrectomy surgery which took place last week and I have been blown away with the way my surgeon has acted...so cavaleir about how he is certain it is all out.  Im afraid to get a change in news next week with the follow up and pathology report.  But worrying about what is not in our control is just a waste of energy.  Live your life one second at a time.  I send you a big hug from San Francisco, CA!!!!

Deanie0916
Posts: 259
Joined: Nov 2016

Sorry to hear about all you are going through, I hope the new treatment will help. Good vibes thoughts and prayers coming your way.

Rooster@1
Posts: 9
Joined: Dec 2017

Hi, sorry to see you dragged backwards my friend, keep on fighting ok... I was diagnosed with kidney cancer, live n work in Hong Kong, from Sydne. It has spread to one of my ribs and all lower abdomen lymph node, around Nov 7th, its a bit blurry ha. I have been on Axitinib for a few weeks now, seems to be holding it at bay, the only major side effect was I lost my voiCw almost completely, what was left sound like a truck of gravel parked in there... at least you have your insurance, my company Blue Cross rejected all my claims and said it was a preconditon case. Since the hospital doctor mentioned according to a yearly prostate examination in May 2017 stated all clear and PSA normal, but at the bottom of the report it mentioned swollen lymph nodes in lower abdomen! Without any comment as to you know get a biopsy done or a PET? So I could have found mine more than six months ago!

i don't have much cash left, the whole process has cost me 250k HKD so far and I'm not sure how I can soldier through my work talking like this!

take care

rob 

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