New here and scared

klarsen316a
klarsen316a Member Posts: 16 Member
edited July 8 in Kidney Cancer #1

Hello, my name is Kim and I was very recently diagnosed with stage 4 kidney cancer. I have a 12cm mass on my right kidney. I donated my left kidney to my sister back in 2003 (she’s still doing great!). They also found nodules on both lungs but they didn’t light up on the PET scan. I will be going for an educational class regarding treatment. They are giving me Inlyta 5 mg twice per day and immunotherapy, I believe no-weekly. I haven’t started yet. I also have my biopsy on the kidney on 7/8/24. I’m very nervous and scared. But I also am being positive. I live alone with my dog, but I do have friends close by and my sister is about an hour away. My son lives in Virginia so he’s very worried about me as well and wants me to go live with him and his family…. I guess I take this day by day and see how it goes.

«13

Comments

  • dmaikui
    dmaikui Member Posts: 13 Member
    #2

    I'm so sorry, I'd be scared too. I'll keep you in my prayers.

  • klarsen316a
    klarsen316a Member Posts: 16 Member
    #3
    https://csn.cancer.org/discussion/comment/1716301#Comment_1716301

    thank you

  • Litl18
    Litl18 Member Posts: 12 Member
    #4

    Kim, I am so happy to hear you are being positive even though you are scared. You came to a great place to interact with other cancer warriors, survivors, and caregivers. I am a cancer survivor and I want you to know that there is a group of us that meet in the Chatroom every evening around 10:00 EST. It’s a place where you can vent, talk about anything and share experiences with other cancer warriors, survivors and caregivers. I was beyond scared too, but somehow you find a way to get through each day. I am here if you need to talk and vent…but I sure hope to see you in the chatroom. I’ll sign in now in case you’re available now and would like to chat before everyone else signs in. Litl18

  • klarsen316a
    klarsen316a Member Posts: 16 Member
    #5

    thank you

  • avaschmidt
    avaschmidt Member Posts: 6 Member
    #6
    https://csn.cancer.org/discussion/328204/new-here-and-scared

    Hello,

    I'm so sorry to hear about your diagnosis. Starting treatment with Inlyta and immunotherapy is a significant step, and the educational class should help you understand what to expect. It's great that your sister is doing well after your kidney donation—that's a testament to your strength and resilience.

  • klarsen316a
    klarsen316a Member Posts: 16 Member
    #7
    https://csn.cancer.org/discussion/comment/1716460#Comment_1716460

    Thank you

  • rcole
    rcole Member Posts: 15 Member
    #8

    hi Kim my friend Litl18 told me about you , i to have kidney cancer stage 4 they took my left kidney about two in half years ago . when the doctor took the kidney out he "dropped " some the cancer in side of stomach so im still fighting it , it has moved to my liver , on the bright side my last 3 CT scans showed little to no cancer but i know i still have i was told it would never really go way , the best advise i can give you is to keep positive and if you someone to talk to come on over to the chatroom a lot of good people there good luck your cancer buddy Roger

  • klarsen316a
    klarsen316a Member Posts: 16 Member
    #9

    Thanks. I just got my biopsy done yesterday and I applied for FMLA intermittent. I have to get paperwork over to my doctor to fill out.
    Right now I’m concerned about how I’ll handle the meds, Inlyta and immunotherapy, which I think is Ketruda. I live alone and am scared of being weak or worse. I’m doing my very best to be positive. I start treatments next Monday.

  • rcole
    rcole Member Posts: 15 Member
    #10

    Good morning Kim. I to started with Keytruda at first I didn't have any problems because I was out of work just had surgery on my shoulder, when I want to work started having issues fatigue the top one I worked in a warehouse driving a forklift and it got hot, the cancer came back I have been on a few different meds,now I'm on Lenvima and Everolimus strong stuff lots of side of effects, blood pressure and blood sugar levels are up but it works so I deal with the effects, I have a appointment today with my oncologist, if have any questions or concerns send me a message be happy to help in any way I can

  • klarsen316a
    klarsen316a Member Posts: 16 Member
    #11
    https://csn.cancer.org/discussion/comment/1716484#Comment_1716484

    thanks. I’m soooo nervous right now.

  • rcole
    rcole Member Posts: 15 Member
    #12

    Are they just fighting your cancer with medicine for now if the Keytruda doesn't work don't worry it doesn't work for a lot people me being on of them , if you don't mind me asking where do you live I'm in Pennsylvania, you should try coming on the chatroom we talk about everything cancer if you need answers or anything else to take your mind off of things

  • Litl18
    Litl18 Member Posts: 12 Member
    #13

    Good morning Kim! I’m so happy to hear you and Rcole are talking! I wanted you to join us in the chatroom to meet him since he is in a similar situation, but there is an awesome group of people that are there every night to help you through this difficult time. We have all dealt with cancer in some way and we are here for you! It’s normal to be scared but you don’t have to go through it alone.
    I am from the Poconos in Pennsylvania, not far away from Rcole, only about 45 minutes. I saw in one of your posts that your son is in Virginia and wants you to come stay with him. Have you considered that option? I know it’s a difficult decision but it may help you to be with family during this difficult time.
    When do you get your biopsy results?
    I hope you know that you WILL get through this, one step at a time. You got this!
    ~litl

  • klarsen316a
    klarsen316a Member Posts: 16 Member
    #14

    Thanks. I do need to get on the chat group. Currently I’m in Illinois and my sister, who is about an hour away also wants me to move in with her and her husband. My best friend also wants me to come closer to her in Indiana. Ultimately, I’d like to stay where I am. However, it may become difficult to stay by myself. My son has 3 young children and I’m not sure that they need to see grandma in a compromised situation. Plus these meds are dangerous to others and all that goes with them, like my clothes need to be washed separately from other people’s clothes, I need to make sure I wipe the toilet with bleach every time I use it…. I also have a 25lb dog that I need to consider before moving anywhere…. All of this is weighing on my mind and my head is spinning! Monday will be my first treatment, so I guess I’ll figure it all out after that.

  • klarsen316a
    klarsen316a Member Posts: 16 Member
    #15
    https://csn.cancer.org/discussion/comment/1716487#Comment_1716487

    Yes, they said I can’t be cured, so this treatment is to reduce the size of the mass and buy me more time to live. I will definitely try to get on the chat.

  • klarsen316a
    klarsen316a Member Posts: 16 Member
    #16

    Also I’m in Northern Illinois.

  • DanF
    DanF Member Posts: 12 Member
    #17

    You are my hero and a warrior Kim keep on keeping on! If you are ever needing a friend to talk to about this I am here for you and know exactly what you are going through. I too donated my kidney and in my case to my oldest sister. Now I have gone through 7 surgeries to remove most of the the tumor on the remaining half of kidney as well as some lymph nodes. Then I did radiation in 2018 followed by 2 years of Inlyta 5 mg 2xdaily and Keytruda every 3 weeks 2021-2022 followed by another round of radiation 2023.

    The power of positive mental attitude is so instrumental just like taking care of yourself is so important but never hesitate to ask for help as the world is full of amazing people charities and foundations. I am sending the best and biggest wishes that they are able to put this into remission for you. Take care and all my best.

  • MI60
    MI60 Member Posts: 15 Member
    #18
    https://csn.cancer.org/discussion/328204/new-here-and-scared

    I was diagnosed Nov. 4th with a 9 cm cancerous mass. I to also have nodules on my lung which Dr. isn’t alarmed. Yes you will be fine. You will most likely going to need robotic surgery as I will to remove the whole kidney due to size of mass Your Dr. will put you on the transplant list. The robotic surgery allows for very fast recovery. Be of good cheer as dialysis now allows for better way of life. Anything I can answer please don’t hesitate to contact me.

  • klarsen316a
    klarsen316a Member Posts: 16 Member
    #19

    I only have 1 kidney and if they remove it I’ll go on dialysis. My doc said I would be on for 2 years if I stay in remission, then I MIGHT be able to get a transplant and I may have to find my own donor.

    https://csn.cancer.org/discussion/comment/1719006#Comment_1719006

  • MI60
    MI60 Member Posts: 15 Member
    #20
    https://csn.cancer.org/discussion/comment/1719007#Comment_1719007

    well I don’t know why a doctor would say might have to find ityour own donor. It would be weird for me at least going around asking someone to donate. But I’m new at this and don’t want to mislead you. First thing for us is get the cancer out than get well. Then take the next step. Try not overthink. You’ll be well.

  • DanF
    DanF Member Posts: 12 Member
    #21

    Hi Kim,

    It is true that all people are responsible for finding their own organ donors. Each institution has their own donor list they manage. However Kim in our case since we are living donors I have been told by numerous Oncologists that we are elevated to the top of such a list since we have already made the sacrifice of saving another life. My sister who I donated to has lost her kidney after the expected 12 years yet was successful to have received a second donation as well and is still with us today.

    Again you are my hero for being a living donor as well. I hope you never even have to consider any of this and just live remission free forever. By the way are you still in current treatment and if so I hope with zero side effects?

    Please verify and validate with your providers and institutions as it sounds like there may be more individualized decisions rather than a national data base that all are entered in to (I almost went on Dialysis in April this year until it spread again and then grew more). There are minimum standards and durations for being in remission along with a litany of blood work and other tests that people are subjected to before being considered ready for the donor recipient list. Again with a belief you will never need it due to being in remission! However to me it honestly sounds like the best annual physical someone could ever get because if they pass those tests then they are truly ready to receive the gift of lift themselves and the providers believe the treatment(s) have been successful.

    Science alongside these researchers and providers combined with the entire staff from the front door to the top are what provide us the opportunity to have hope in my opinion and I am so grateful for the amazing ones I have on my team.

    As always wishing the best with zero side effects for you Kim and I am hoping for success everyday on your journey.

    Kindly,

    Dan

    P.S. Wishing the best to MI60 (sounds like you already have your game plan set) and everyone who walks this path in life and here is to hoping for a brighter future for all.

    Special Love to NCF

Discussion Boards