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Newly diagnosed Stage IV

rhabdoid2018
Posts: 2
Joined: Jan 2020

My husband had an emergency Nephrectomy in 2018 to remove a 22 cm tumor along with his right kidney and adrenal glands. The pathology report showed the tumor had rhabdoid and sarcomatoid qualities, which meant it was aggressive. There was a positve margin on the vena cava. After his surgery, he's been having abdominal and chest CT Scans and MRIs every 3 months. From the beginning they've been watching 3 (now 4) nodules in the upper lobe of the right lung. In December, they performed a VAT biopsy of the largest nodule. It was just at 1 cm. The pathology report says: 

  • metastatic renal cell carcinoma with focal rhabdoid features
  • visceral pleural invasion is present
  • angiolymphatic invasion is present
  • etc.

Oncology gave 3 options:

  1. Nivo + yervoy
  2. Cabo
  3. take part in a trial comparing nivo + NKTR-214 and Cabo (I think. Still reading the details, and he may not qualify.) 

We are at a regional center of excellence for cancer treatment and have so far been pleased with the level of care. However, before we embark on any treatment, we wanted to get some advice from those who've been there. Which of these options would you choose? Should we get a second opinion? Where would you recommend we go for that second opinion? (Eastern U.S. is preferred.)

Thanks for any and all advice. If someone can explain what some of the terms in the pathology report mean in English, that would be helpful too. 

MarkDavid18's picture
MarkDavid18
Posts: 60
Joined: May 2018

First I want to say how sorry I am for you and your husband. I know how devastated I felt when I was told I progressed to stage IV. I pray for strength as you embark on this journey. The good thing is there are options ... new treatments have been introduced and there are more coming.  

My cancer pathology was similar - unclassified grade 4 with sarcomatoid and rhabdoid features as well as necrosis. I started with Ipi/Nivo (Yervoy/Opdivo) and had a pretty good response initially but one stubborn tumor in my right lung kept growing so I moved to Cabo. So far Cabo has been working - all tumors have decreased in size and nothing new. The SEs of Cabo are a lot harder than Ipi/Nivo but manageable.

My doctor is the head of GU oncology at Mayo Clinic. I recently asked him if he would have started with Ipi/Nivo if I was diagnosed today and he said he would probably start me on a combo of a targeted therapy (Cabo) and immunotherapy (nivo) as that has had significant success with similar types of cancer. That combo was not available when I was diagnosed in June of 2018.  I think your medical team has a pretty good plan but seeking another opinion is always an option. For me the tumors were growing so quickly that I needed to start systemic treatment if I had any chance to live.

I highly recommend checking out Smartpatients.com - it is a great community of survivors and Care givers and has a wealth of first hand knowledge based on experience. 

Best of luck to you both. 

rhabdoid2018
Posts: 2
Joined: Jan 2020

Thank you so much for your reply. I appreciate the time you took to answer me. Your response contains a lot of useful information. Each time I read it, I see something else that helps. You defintely understand how we are feeling - devastated is the only word. I'm also a bit overwhelmed.

It does sound like my husband's cancer is somewhat similar to yours. I'm afraid we may also be in a situation where we don't have too much time to spend seeking out second opinions as this is an aggressive cancer. It puts my mind at ease knowing that the options we are being presented with make sense. My husband is going in for some additional scans to see where else the cancer might have spread and also to find out if he qualifies for the trial his oncologist recommends. Thanks for telling me about Smartpatients.com. It looks like it will be a big help as we proceed. 

I hope the Cabo continues to work for you and that the SEs continue to be manageable. 

Manufred's picture
Manufred
Posts: 241
Joined: May 2017

My RCC history is also similar.  I enrolled in an Ipi/Nivo trial in July 2015 and am now in total remission (have been for more than 2 years).  Read my profile.  

For me the SE's from immunotherapy were quite mild and did not interfere with normal life.

Combination treatments look to be the current way of thinking.

Either way, you both have good reason to be confident of staying on top of this.  

Best Wishes,  Fred

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