Newly diagnosed Stage IV

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. 

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

kimmer4life said:

18 month Scan 2cm (not mm) nodules

18 months post radical Left Nephrectomy clear cell carcinoma

This morning i reviewed my ct scan results.  CT of chest reveals 2 pulmonary nodules that were not present on previous scan  They are not small.  one is 1.5cm and the other is 2 cm.  The abdominal CT revealed increasing Upper adbominal and retroperitoneal lymph nodes with definite gastrohepatic ligament adenopathy, non specific metastasis and reactive nodes also states probable new right lower lobe pulmonary metastasis. 

All previous scans were normal post nephrectomy

I dont see my doctor until next Tuesday.

I am a nurse. and I am terrified.  I could use some successful treatment stories

If I am understanding this, the scans show enlarged lymph nodes.  As a nurse, you know that this doesn't automatically mean anything.  With the abdominal scan, you mentioned increasing nodes, were those there in previous scans?

sandy23 said:

If I am

If I am understanding this, the scans show enlarged lymph nodes.  As a nurse, you know that this doesn't automatically mean anything.  With the abdominal scan, you mentioned increasing nodes, were those there in previous scans?

Combined with new lung nodules the lymph nodes are concerning.  Alone I would agree that doesn't automatically mean anything.  The nodes were large initially but still in the normal range.  Now they are outside the normal limits.  I have been referred to an Oncologist.  Brain Scan Friday, PET Scan next Tuesday and follow up with Oncologist Thursday.  

kimmer4life said:

Thanks for the encouragement.

Thanks for the encouragement.  I've been mostly positive, but as I start researching therpies and treatments, and read the prognosis, it gets really scary!   I want to be informed about my treatment options, but at the same time its really discouraging.  

First of all - IGNORE THE PROGNOSOS STUFF YOU SEE ONLINE.  The current published stuff is hopelessly out of date, as RCC is one of the cancers that has been most affected by the immunotherapy revolution.  Yes, this stuff still kills a lot of people, but now there are also a lot of people that it doesn't kill.  And the runway is a lot longer, if you know what I mean.  My oncologist has declined to discuss a prognosis for me, but has simply told me that Stage 4 RCC is "incurable but manageable".   He also told me that a few years ago there would only be a couple of things he could try on me.  Today, there are so many choices that it's almost too confusing for the doctors to pick one to start with.  

I was diagnosed in October, started a treatment in November/December.  Had my first post-treatment scan two weeks ago today and the results were technically mixed.  My two largest tumors were substantially beaten up by the therapy, called mixed because I had a couple of new ones pop up.  But the two large tumors had shrunk by 40% and 70%, respectively, and one of thme now has a necrotic spot in the middle of it.   Not uncommon to have a little new stuff show up when starting a treatment, expect the next scan to be all good.  

I also agree with eug in recommending you also check out smart patients.  The kidney cancer group there is substantially made up of Stage 4s, a lot of whom have survived with their disease for yeeeeeaaaaarrrrrrs.     

MarkDavid18 said:

Options ...

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. 

Yes, I would highly recommend you get a second opinion, no matter who/where you're currently going.  Depending where you are, I'd recommend:

ONCOLOGISTS:

Dr. Hammer, UT Southwest

Dr. Rini, Vanderbuilt (recently, formerly of Cleveland Clinic)

Dr. Vaishampayan University of Michigan.  (recently, formerly at Karmanos Detroit)

RADIOLOGISTS

Dr. Hannon, Ut, Southwest

Dr. Stephens, Cleveland Clinic.

I was Stage 4 RCC, clear cell until my scans on 6/29/2020.  After my 4 year journey, I just got my "Complete Response" diagnosis.  Read everything you can, listen to the experts, and own your disease therapy decisions is my best advice.   Many Oncologists do not believe in using "local controls" like SBRT to selectively erradicate problematic lesions.  I had it done, and it proved very effective in my cancer management.  Dr. Hannan possesses unique experience in using SBRT to promote immune responses.  His consultation proved very beneficial in obtaining local control of two lesions that were demonstrating abnormally fast growth compared to my other lesions.  Most importantly, no matter what, maintain a positive mental state, and don't allow the cancer to define you, or control your life.  My best wishes for your recovery.

Hi, I want to say I wish all of us and family the best health possible. 

I am caregiving for my wonderful brother in law, who was diagnosed with renal cell carcinoma. 

The doctors have already told my sister to take him home for hospice. 

I don't see him dying. He breaths on his own, eats a popsicle everyday. He speaks and is articulated in his communication.  

If he wants something he tells us. 

We plan on getting a Sara Steady to help him stand again.

He is on morphine.

Has anyone improved their loved ones appetite with Medicinal Marijuana? 

Our loved one, the nurse, the doctors, the family are all on board at this stage.

I am just wanting to know what has worked for anyone with renal cell carcinoma stage 4, without causing nausea,  loved one is male in his early 60's. Was in extraordinary health until hit with curve ball.

God Bless all of you with LOVE and LIGHT.

Respond through this website, or email me thank you.

Thank You

Caregiver for my wonderful family

Cathy