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Update on my son-in-law, John

penitent
Posts: 79
Joined: Jun 2016

As some of the longer-term members on this forum may know, my SIL was diagnosed with Stage IV, grade 4, 60% sarcomatoid RCC just about two years ago.  He had a total left nephrectomy for a 13 cm tumor.  After a nasty stint on Votrient he moved on to Opdivo which appeared to be keeping the beast away.  His last three scans showed NED after having some SBRT treatments on a paratracheal tumor near his aorta.  

We were particularly hopeful that things were looking good although he has been suffering from a bad productive cough since December.  It was thought to be simple brochitis or similar infection.  But the cough didn't go away was was getting worse coughing fits and the nagging sensation of having to "bring something up" with the coughing.  There was also a tinge of blood in the sputum.  Fast forward to the last couple of weeks.  He had another CT scan and it showed a "thickening" of the trachea wall which demanded a bronchoscopy exam.  That was done last week and the result is a large mass coming from and through the distal (back) side of the trachea which is now obstructing about 50-60% of the airway.

So, what can be done?  It's not operable due to the size of the mass and the vascular nature of RCC cells. That would be too much of a chance of massive bleeding.   Radiation is also not a possiblity due to the tenderness of the trachea and the possibility of total collapse.  Palliative possibilities include putting in a stent to help keep the airway open or more drastically, a tracheotomy or 'ostomy' or 'ectomy'.  The onc is now taking him off the Opdivo and, if his insurance approves, putting him on CABO in an attempt to shrink the mass quickly before it totally occludes the airway.  The SEs of CABO are certainly not fun from what we've surmised but chemo is the only immediate line of treatment available.

So please keep John in your prayers.  He is only 43 yo with a three year old and two year old...and my daughter is expecting #3 in about two months.  Thank you.

Penitent

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

 My heart breaks for you  all that is just heartbreaking to read especially when you was doing so well

You have a very tough road to walk. I will certainly pray and my thoughts and best wishes are with you all 

 He certainly very strong person to have fought this far I pray that things start to pick up and  he gets to hold the new baby and hopefully beyond

Hugs and love

 

Annie

stub1969's picture
stub1969
Posts: 769
Joined: Jul 2016

Part of life on this board is celebrating the ups and supporting the lows.  Penitent, thanks for sharing both with us over the last two years.  I pray Cabo works and we can help you celebrate the next up.

Blessings,

Stub

Supersum's picture
Supersum
Posts: 103
Joined: Aug 2017

Very sorry to read what John is going through it must be such a strain on your family, the happy news of your soon to arrive new grandchild will come with the ongoing need to focus on and make difficult treatment decisions. John is blessed to have the support of an active and caring mother-in-law like you, both for himself personally and I am sure also for his wife and his children. I hope you can all find the strength you need to face this difficult challenge.

Allochka's picture
Allochka
Posts: 847
Joined: Nov 2014

Oh no... So sorry to hear it!

Please post this on Smart Patients as well. I've never used that site myself, but heard that it is a great place for finding specific medical info from fellow patients. Hopefully someone there would be able to share similar experiences, advise something...

I'll keep fingers crossed for him and your family!

Alla

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hardo718
Posts: 853
Joined: Jan 2016

I will keep all of you in my prayers, I'm so sorry.

Donna~

APny's picture
APny
Posts: 1905
Joined: Mar 2014

How terribly heartbreaking. I'm so sorry. I will keep you and family in my thoughts. I agree that you should also post on Smart Patients. Keeping my fingers crossed that the Cabo works quickly to shrink the mass.

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 452
Joined: Jul 2014

Very sorry to hear this terrible news.  Hope his situation improves.

Canadian Sandy's picture
Canadian Sandy
Posts: 479
Joined: Jul 2016

So sorry to hear this. Prayers going your way.

 

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Cabo has turned out to be quite an effective drug, I will keep you and your family in my positive thoughts. 

penitent
Posts: 79
Joined: Jun 2016

Last week was a very busy week of multiple doctor visits and calls, ENT, oncologist, radiology oncologist, etc.  Bottom line from a lot of heads working together is that the massive growth in John's trachea is more likely to be massive inflammation from the SBRT radiation therapy he had about a year ago rather than being a large tumor.  Imagine the trachea about 65% occluded with what looks like globby chicken fat.  So CABO is off the table for now and he has gone back on Opdivo.

There is always a possibility that the mass in the throat can get worse...the trachea can actually collapse or nearby weakened major blood vessels could rupture as well, but for now...this is the plan.  

With cancer it is always ups and downs, knowns and unknowns...but keep fighting the beast.

Penitent

stub1969's picture
stub1969
Posts: 769
Joined: Jul 2016

I love the "hope" you bring to this last post.  We're all pulling for your family.  

Blessings,

Stub

APny's picture
APny
Posts: 1905
Joined: Mar 2014

Keeping fingers crossed! What are they planning on doing for the inflammation, if in fact that's what it is?

foroughsh's picture
foroughsh
Posts: 771
Joined: Oct 2014

You and your family especially you son in low are in my prayers

 

penitent
Posts: 79
Joined: Jun 2016

It's hard when one oncologist says "there's no way it's NOT a tumor" no matter what the biopsy says...and another says...nope, it's not -- negative biopsy, no cancer.  And the ENT says, yeah...not cancer, but it might kill you anyway.  

As far as the inflammation or whatever it is, it's not operable, or resectionable...maybe steroids will help...or even maybe the Opdivo.  Next scope is in May and we'll see how it is then.

AnnissaP's picture
AnnissaP
Posts: 617
Joined: Sep 2017

Wow. I am sorry to hear this. Such ups and downs depending on whose opinion it is. I am hoping for the best for all of you. I hope the the course of treatment he/the doctors decide on works!! Nothing is impossible. He has a life to live xoxo

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