newly diagnosed mRCC

amandac2018
amandac2018 Member Posts: 26
edited February 2018 in Kidney Cancer #1

Hi there I am new to your forum and have been reading all your positive posts and kind words. My 2nd cat scan results came back today (1 year since radical nephrectomy) I have 9 nodules between both lungs and also have a pleural mestatasis. Not the best news I could have got, but looking forward to an appointment with an oncologist in the near future to get my treatment options on track. Thanks for listening

Comments

  • Manufred
    Manufred Member Posts: 241 Member
    #2

    A diagnosis like that is tough, however there are a range of options for you so be positive.

    Ask your oncologist about the latest trends for treating mRCC.  I personally am a poster boy for immunotherapy (Ipi/Nivo combination, Checkmate 214 trial) and full details are on my "About me" page.

    Best wishes.

     

  • MFoster
    MFoster Member Posts: 17
    #3
    I'm sorry you are fighting

    I'm sorry you are fighting RCC. I'm praying for a solid plan and healing. What stage were you originally diagnosed with?

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    #4
    Hi. I hope you get the best

    Hi. I hope you get the best care possible and that your treatment is successful. All the best for you!

  • amandac2018
    amandac2018 Member Posts: 26
    #5
    Manufred said:

    A diagnosis like that is tough, however there are a range of options for you so be positive.

    Ask your oncologist about the latest trends for treating mRCC.  I personally am a poster boy for immunotherapy (Ipi/Nivo combination, Checkmate 214 trial) and full details are on my "About me" page.

    Best wishes.

     

    Thanks so much for the

    Thanks so much for the information. I am learning so much from this site. 

  • amandac2018
    amandac2018 Member Posts: 26
    edited February 2018 #6
    MFoster said:

    I'm sorry you are fighting

    I'm sorry you are fighting RCC. I'm praying for a solid plan and healing. What stage were you originally diagnosed with?

    Originally I was told after

    Originally I was told after the radical nephrectomy 'we got it all', of course cancer can be so sneaky. I waited for 6 months for my first cat scan and unfortunately during that time my tumor grew to 10 cm. I think that means I was Stage 2. I tried not to look at my reports in that first year...will revisit that now. Thanks so much for your kind words

  • amandac2018
    amandac2018 Member Posts: 26
    #7
    AnnissaP said:

    Hi. I hope you get the best

    Hi. I hope you get the best care possible and that your treatment is successful. All the best for you!

    Thank you AnnisaP, big hugs.

    Thank you AnnisaP, big hugs.

     

  • ImNotDeadYet
    ImNotDeadYet Member Posts: 244
    #8
    Sounds familiar

    Hi Amanda. Your story sounds a bit similar to mine. I'm just over one year out and will soon be starting Votrient for my lung nodules. There are definitely a number of options, and I'm sure your oncologist will go over them all with you. Sorry you have to deal with this too. Keep us posted on your progress and what treatment you end up pursuing. From a purley selfish perspective, I am eager to hear stories and results from people with similar situations to mine. Hang in there - it will get better.

    Gary

  • amandac2018
    amandac2018 Member Posts: 26
    #9
    ImNotDeadYet said:

    Sounds familiar

    Hi Amanda. Your story sounds a bit similar to mine. I'm just over one year out and will soon be starting Votrient for my lung nodules. There are definitely a number of options, and I'm sure your oncologist will go over them all with you. Sorry you have to deal with this too. Keep us posted on your progress and what treatment you end up pursuing. From a purley selfish perspective, I am eager to hear stories and results from people with similar situations to mine. Hang in there - it will get better.

    Gary

    hi Gary, I have read a number

    hi Gary, I have read a number of your posts. I sure hope you get good results from Votrient! I still have not heard when my oncologist appointment is...the waiting AGAIN is tough! I understand the 'selfish perspective', although it is so hard to read about others that have to go through this ****, it also makes me realize I  don't have to go through this alone! My dad had a radical nephrectomy almost 7 years ago and 18 months later he was stage 4 mRCC. He is living proof the meds can help!! He is on Sutinib, and has been since 18 months after his nephrectomy. I look forward to hearing positive things from your treatment too!

  • foxhd
    foxhd Member Posts: 3,181 Member
    #10
    look at the good news

     You will prepared to have a future of close health monitoring. So learn to recognize that you are fortunate to be given a chance to fullfill your commitment to not squandering your life. Better outlook, better nutrition, better appreciation of all that really matters. Just be ready for surprises. Mostly, believe in yourself. You can do it.

  • amandac2018
    amandac2018 Member Posts: 26
    #11
    foxhd said:

    look at the good news

     You will prepared to have a future of close health monitoring. So learn to recognize that you are fortunate to be given a chance to fullfill your commitment to not squandering your life. Better outlook, better nutrition, better appreciation of all that really matters. Just be ready for surprises. Mostly, believe in yourself. You can do it.

    Thanks for the positive words

    Thanks for the positive words. most days i am a pretty positive person, the nasty thoughts niggle into my brain every now and then, once I get into to see the oncologist and have a plan. My dad will be 5 years on Sutinib in June of this year, and he was stage 4 mRCC! I know it is possible to have the outcome we all hope for.

     

  • amandac2018
    amandac2018 Member Posts: 26
    #12
    oncologist on Mar 6th

    Happy to report i have an oncologist appointment now on March 6 2018. few blood tests next week and a muga scan. I was happy with all this until i got a call from my family doctor today telling me they want to do a lung biopsy!! i am such a wimp when it comes to needles. i dealt with all this news in the past 3 weeks along with the radical nephrectomy last year better than the thought of the needle biopsy. Blech!!!! but knowledge is power!! so anything they do will keep me on the path of healing. thanks for listening..

  • Hd67xlch
    Hd67xlch Member Posts: 151 Member
    #13
    It doesnt hurt..........

    The lung biopsy is a piece of cake, takes about 15 minutes and it really doesnt hurt, good luck

  • amandac2018
    amandac2018 Member Posts: 26
    #14
    Almost all tests done and start Sutent

     this week. I saw my oncologist on March 6th,.he is awesome. He trained under Dr Heng in Calgary and is a medical oncologist who treats kidney cancer patients. He is young, super easy to talk to and I am feeling very confident being in his care. I had another cat scan for abdomen and pelvis, they look good. I got through my lung biopsy, unfortunately the tissue sample was too small, but I don't have to do another one. I have a bone scan on the 14th. As I mentioned in another post, I am definitely more worried about the possible SE than the cancer at this point, I work full time, look after my 120 lb dog and generally feel fine. We shall see. At least thanks to all the posters here I am armed with knowledge to help combat SE. I do have 10 mets bi-laterally and one is quite large at almost 6cm, my dad has been on Sutent everyday for almost 4.5 years and is doing fine, I am hoping to follow in his footsteps. Wishing you all positive thoughts and good scans :)

  • amandac2018
    amandac2018 Member Posts: 26
    edited March 2018 #15
    Update as of march 14th

     

    Muga Scan - normal

    Abdominal and pelvi cat scan- no signs of lesions

    lung biopsy - inconclusive

    Bone Scan - one small spot at T3 they will scan again in 3 months.

    All in all good news, that means we are just treating the lesions on my lungs and I am just waiting to hear from the pharmacist that I can pick up my prescription for Sutinib. 

Discussion Boards