Looks like mets for me

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  • rn1774
    rn1774 Member Posts: 11 Member
    #22
    paintergrl said:

    spread

    I think they are doing a systemic approach because my cancer is grade 4 and actively spreading. We are hoping to keep it from spreading more and to other areas. 

    Paintergrl, what is a

    Paintergrl, what is a systemic approach? Myself I have Sarcomatoid and grade 4 but stage 1 with 4.6 cm tumor. I will have the 3 month scan in August.. very nervous..

    You mention your cancer actively spread, is your nodule in your lung is spreading? 

  • jeffstl34
    jeffstl34 Member Posts: 8
    #23
    paintergrl said:

    Thanks

    Thanks for your support! I got a call at 8pm tonight from the Renal Onocologist at UCHealth in Denver. She offered to enroll me in a study where I would get a combo of cabozantinib and pembrolizumab. I have an appointment on Monday at 9am! No messing around. No biopsy is required and we could start in about 2 weeks, maybe less. It sounds promising. I need to do more research and will check out Smart Patients. Its been a rough day for sure but I feel some hope. 

    Another Uchealther

    My thoughts are with you and your family. It is never easy.  

  • todd121
    todd121 Member Posts: 1,448 Member
    #24
    paintergrl said:

    spread

    I think they are doing a systemic approach because my cancer is grade 4 and actively spreading. We are hoping to keep it from spreading more and to other areas. 

    Radiation

    Of course it's good to ask, but from hearing others stories, they seemed to use radiation for single tumors or maybe 1-2 spots. If you have multiple spots scattered throughout your lungs it may not be an option.

    I'm glad you have an RCC specialist as a consultant. The field is changing fast and they are finding more and more that a shotgun approach or treating everybody the same is not working very well and RCC specialists are better able to deal with the fact that RCC is not a single disease, but, in fact, many diseases which require different treatments. I'm quoting Dr. Figlin at Cedars Sinai who I just heard talk yesterday on this issue. There are many oncologists that are out of touch with the latest break throughs in RCC who are likely to give an ineffectual treatment, so getting good advice is incredibly important.

    Regards,

    Todd

  • Bryn1108
    Bryn1108 Member Posts: 97 Member
    #25
    Big hugs and prayers

    Lifting you and your family up everyday in my prayers.  

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    #26
    Yes, finding it early is such

    Yes, finding it early is such a good thing. I hope you get the best care and medicine possible!!! I hope you heal and do well...nothing is impossible!

  • Steve.Adam
    Steve.Adam Member Posts: 463 Member
    #27
    Keep painting

    Hi Paintergrl,

    I like the idea of the painted rocks.  A couple of times I have left little surprises for people knowing there was really no chance that anyone would ever find them. But if someone ever does they will at least get a laugh out of it.

    Rocks are forever so they might be found decades or even centuries in the future.

    Wishing you well,

    Steve.

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    edited June 2018 #28
    We understand, the best we

    We understand, the best we possibly can, how this is a struggle with the unknown, balanced with HOPE!

    Know that WE are standing beside you ALL THE WAY!!

    Sending  you healing hugs to you and yours!

    Jan

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #29
    Amy_Jo said:

    I was diagnosed in February

    I was diagnosed in February had my left kidney removed March 8 2018. I was told my pathology was clear and I was cancer free. Two months later I have Mets in my liver lungs and spine. It is devastating I have 4 children 2,5,13,16. I have shared with my oldest what's going on and my Oncology office offers a social worker to help with the stress of it all. My oncologist started me on a combination of yervoy / opdivo. I recently had a second opinion and have decided to change care providers. My new oncologist offer a genetic testing and physician which was never offered by my first oncologist. I know it's hard stay positive I will keep you in my prayers. 

    Oh dear, this is a challenge

    Oh dear, this is a challenge to say the least! Know that we will walk beside you and be there for you on this journey~

    Please take advantage of therapy if you can fit in your busy lifestyle. You need the validation, the guidance and understanding!

    You deserve health and wellnes!

    Sending you and yours a healing HUG!

    Jan

  • Gtngbtr58 @aol.com
    Gtngbtr58 @aol.com Member Posts: 206 Member
    #30
    Good luck

    On this leg of your journey-I'm hoping you've found ypur lucky charm-best of luck -June

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    #31
    Radiation oncology consult?

    I wish I knew in the beginning of my husbands treatment what we know now.  He was diagnosed Stage 4 Jan 2012.  He is doing well.  The best thing you can do for yourself is be a member of SmartPatients.  There is an impressive knowledge base there, and I guarantee you will be impressed.  I agree with what Todd said.  I think you should pursue an appointment with a radiation oncologist.  My husband has had radiation for mets and they have been destroyed.  It's a good option to at least check out if it is another treatment option for you to consider.  Information is power.  Second opinions are invaluable.  Every RCC patient is unique and it would be good for you to at least talk to an expert in radiation oncology.  I wish you the very best.  Another thing about smart patients is that most people are Stage 4, and it gives you alot of hope to know that there are many of them doing well.

  • paintergrl
    paintergrl Member Posts: 47
    #32
    a_oaklee said:

    Radiation oncology consult?

    I wish I knew in the beginning of my husbands treatment what we know now.  He was diagnosed Stage 4 Jan 2012.  He is doing well.  The best thing you can do for yourself is be a member of SmartPatients.  There is an impressive knowledge base there, and I guarantee you will be impressed.  I agree with what Todd said.  I think you should pursue an appointment with a radiation oncologist.  My husband has had radiation for mets and they have been destroyed.  It's a good option to at least check out if it is another treatment option for you to consider.  Information is power.  Second opinions are invaluable.  Every RCC patient is unique and it would be good for you to at least talk to an expert in radiation oncology.  I wish you the very best.  Another thing about smart patients is that most people are Stage 4, and it gives you alot of hope to know that there are many of them doing well.

    Thanks

    I am on Smart Patients and its great! I will definitely look into the radiation. Thank you!!

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    #33
    paintergrl said:

    Thanks

    I am on Smart Patients and its great! I will definitely look into the radiation. Thank you!!

    Great

    I am so glad you became a member.  Dont hesitate to introduce yourself and ask for advice.  Susan P is an expert and knows everything about radiation therapy.  Stay a member here too, because both boards are awesome.  Csn is very supportive and I think more casual.  You will see the difference.  Both sites have very friendly helpful people.  

  • paintergrl
    paintergrl Member Posts: 47
    #34
    a_oaklee said:

    Great

    I am so glad you became a member.  Dont hesitate to introduce yourself and ask for advice.  Susan P is an expert and knows everything about radiation therapy.  Stay a member here too, because both boards are awesome.  Csn is very supportive and I think more casual.  You will see the difference.  Both sites have very friendly helpful people.  

    Yes!

    I agree! I do look at both boards. I even met up with another RCC patient who lives near me from SP! I have posted a few times on SP. I have the same screen name there too. There really is nothing else like other people who are going through the same thing. I definitely feel more hopeful too. My goal is to live until my youngest son graduates from HS - 7 years and maybe longer!! 

  • Deanie0916
    Deanie0916 Member Posts: 626 Member
    #35
    Paintergrl

    Hope and pray for wisdom for the next steps.

  • ImNotDeadYet
    ImNotDeadYet Member Posts: 244
    #36
    UC Health

    You're in great hands. I'm at UCHealth too, though with a different oncologist in the same group. They are fantastic. The care I've received from them and from others there has been great. I'm on Votrient for my lung mets, and so far so good. I hope your results are as good or better. Wishing you all the best!

    Gary

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