Newly diagnosed Stage IV

rhabdoid2018
rhabdoid2018 Member Posts: 2
in Kidney Cancer #1

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. 

Comments

  • MarkDavid18
    MarkDavid18 Member Posts: 61
    #2
    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. 

  • rhabdoid2018
    rhabdoid2018 Member Posts: 2
    edited January 2020 #3
    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. 

    Thank you!

    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
    Manufred Member Posts: 241 Member
    #4
    Ipi/Nevo

    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
    kimmer4life Member Posts: 3
    #5
    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

  • sandy23
    sandy23 Member Posts: 143 Member
    #6
    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

    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?

  • eug91
    eug91 Member Posts: 471 Member
    #7
    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

    welcome kimmer-

    I'm so sorry you had to join us under such circumstances. 

    As for successful treatment stories, search this forum and you will find a bunch of them - some who've had long lives with treatment, some who've had complete response (remission). You have reasons to be optimistic. I know it's hard, but try not to be scared. Give yourself some time to get over the shock of this news, let yourself be sad, and maybe treat yourself to something nice this weekend.

    But then come Tuesday be ready to see your doctor, be ready to ask questions and take notes, and get ready to battle. You already beat this thing once. No reason you can't do it again. 

    We're with you - you've got this! 

    Oh, also, if you haven't already, consider signing up at smartpatients.com - it's another great active forum. Depending on what your doctor tells you about your plan to deal with the lung nodules, you'll get great advice there, too. 

  • kimmer4life
    kimmer4life Member Posts: 3
    edited February 2020 #8
    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

    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
    kimmer4life Member Posts: 3
    edited February 2020 #9
    eug91 said:

    welcome kimmer-

    I'm so sorry you had to join us under such circumstances. 

    As for successful treatment stories, search this forum and you will find a bunch of them - some who've had long lives with treatment, some who've had complete response (remission). You have reasons to be optimistic. I know it's hard, but try not to be scared. Give yourself some time to get over the shock of this news, let yourself be sad, and maybe treat yourself to something nice this weekend.

    But then come Tuesday be ready to see your doctor, be ready to ask questions and take notes, and get ready to battle. You already beat this thing once. No reason you can't do it again. 

    We're with you - you've got this! 

    Oh, also, if you haven't already, consider signing up at smartpatients.com - it's another great active forum. Depending on what your doctor tells you about your plan to deal with the lung nodules, you'll get great advice there, too. 

    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.  

  • spiny_norman
    spiny_norman Member Posts: 3
    #10
    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.  

    kimmer

    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.     

  • donna_lee
    donna_lee Member Posts: 1,042 Member
    #11
    I know tumors can be large, but

    22cm; or was that supposed to be 22 mm.    22cm is 8.a5 inches; whereas 22mm is  about 3/4 inch.  Either way, cancer is not good.  I can only give encouragement, as mine was large, aggresive and stage 4 when it was Dx'd.  And was never offered any drugs for control, shrinkage, etc. 

    More info when you click on my user name.

    Hugs,

    donna_lee

  • kidneycancersurvivor
    kidneycancersurvivor Member Posts: 4
    edited July 2020 #12
    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

    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.

  • kidneycancersurvivor
    kidneycancersurvivor Member Posts: 4
    edited July 2020 #13
    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

    I had stage 3 lung lesions

    I had stage 3 lung lesions (dozens) at diagnosis in June 2016.  Upon biopsy, I was restaged to stage 4.  First, I don't know your scan interval but I'm suspecting every 6 months.   I would highly recommend biopsy and TEMPUS testing.  TEMPUS will help define your tumor profile, and will suggest treatment options based on the profile.

     

    Many Oncologists are resistent to TEMPUS, but it was suggested to me by a true cancer expert who's name I'll withhold from publishing.  The TEMPUS testing changed my trajectory from using newly approved combination Immune therapies to an older targeted drug.  We started therapy in Jan 2020, we repeated my scans 9 weeks later and my cancer was 40/50% smaller (all lesions) with 3 completely resolved.  On June 29 I had scans again and was stunned to receive a "Complete Response" diagnosis. 

     

    Be sure you're dealing with a true Kidney Cancer expert.  Research your doctor, look for a history of being an investigator/author in multiple targeted and immune clinical trials.  The doctor should be well published in Kidney/Urologic cancers.

     

    Relax!  I know it's scary at first.  Maintain a positive mental state, don't let this disease define you or control your life.  Attend to your spiritual beliefs.   Hopefully, you will get a great result.  Best wishes!

  • Cathy Michigan
    Cathy Michigan Member Posts: 1
    edited August 2020 #14

    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

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