Update on my son-in-law, John

penitent Member Posts: 79

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.



  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    My heart breaks for you all

     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



  • stub1969
    stub1969 Member Posts: 959 Member
    Tough update

    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.



  • Supersum
    Supersum Member Posts: 109 Member
    Very sorry to read what John is going through

    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
    Allochka Member Posts: 1,021 Member
    Oh no... So sorry to hear it!

    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!


  • hardo718
    hardo718 Member Posts: 853 Member
    Oh gosh

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


  • APny
    APny Member Posts: 1,995 Member
    How terribly heartbreaking. I

    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.

  • Very sorry to hear this

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

  • Canadian Sandy
    Canadian Sandy Member Posts: 739 Member
    So sorry to hear this.

    So sorry to hear this. Prayers going your way.


  • sblairc
    sblairc Member Posts: 585 Member
    Cabo is doing great things I hope also for yours son in law

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

  • penitent
    penitent Member Posts: 79
    Further Update...better news?

    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.


  • stub1969
    stub1969 Member Posts: 959 Member

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



  • APny
    APny Member Posts: 1,995 Member
    Keeping fingers crossed! What

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

  • foroughsh
    foroughsh Member Posts: 779 Member
    You and your family

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


  • penitent
    penitent Member Posts: 79
    Thank you all

    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
    AnnissaP Member Posts: 632 Member
    Wow. I am sorry to hear this.

    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