New here and scared

2

Comments

  • klarsen316a
    klarsen316a Member Posts: 16 Member

    I was diagnosed in June, so I’m still battling. My treatment plan is keytruda and Lenvema. There are side effects such as fatigue and loss of appetite. I still work to keep me occupied. I’ve heard too that living donors get elevated. I’m scared of dialysis though and how that will make me feel.

  • MI60
    MI60 Member Posts: 15 Member

    I suppose by now you have done your own research into dialysis and have made some conclusions but from what I understand a lot of the side effects can be reduced somewhat by how good the doctor monitors fluid levels in the blood which seems to be a key drawback of dialysis.

  • MI60
    MI60 Member Posts: 15 Member

    Thanks Dan,Kim for the support. My case has come at me like a rocket being diagnosed Nov.3 to my upcoming surgery Dec. 5 required me to get a grip quick so to speak. It is important to have a great family/friend/support. Thanks again and to all God bless be well.

  • klarsen316a
    klarsen316a Member Posts: 16 Member

    I really haven’t researched it. But I’ve talked to a friend that was on it. It makes me very nervous.

  • MI60
    MI60 Member Posts: 15 Member

    I understand your concern. It is also your right to expect your Doctor to communicate his vision for short and possible care. If you don’t feel comfortable with the care your receiving don’t hesitate to find another Doctor. This is your health not theirs. You are in control.

  • klarsen316a
    klarsen316a Member Posts: 16 Member

    I trust my doctor it’s just the unknown that makes me nervous.

  • MI60
    MI60 Member Posts: 15 Member

    oh I definitely get that! I do my best to educate myself so I don’t dwell or draw incorrect conclusions. Right now I’m learning about diet.

  • klarsen316a
    klarsen316a Member Posts: 16 Member

    I go through City of Hope and they educate on diet and natural supplements as well as many other things. It’s an awesome place but my nerves get the best of me often.

  • DanF
    DanF Member Posts: 12 Member

    HI MI60,

    I found out literally on NYE 2014 due to a blood clot and voiding 600 ml of blood in the ER when I first showed up. Technically I started voiding blood pretty bad a few days prior on my bday when I first woke up. Ended up I had serious blood clot that was surgically removed right around midnight. When I woke from that I was informed that I was going for surgery the next day to have a partial nephrectomy to address this darn thing called cancer. What were the odds that the most amazing urologic surgeon in the Rocky Mountain Region or world in my opinion was right there that very moment in Parker CO, eternal thanks to Dr Ledgerwood.

    For my post surgical and present medical oncologist selection it was a much different story and very scary at the first stop. However it only took passing on the first one to find my rock the amazing Dr Flaig who is so much more than a medical oncologist and without question the worlds best provider at UCHealth in Colorado. This is the most important person to seek find and secure as soon as you are up to if you do not already this person in place. I again was guided to him by an angel so its incredible to look back and see how and where and why things happened even though we have no control however we do control and advocate for ourselves which means surrounding yourself with the best care team possible. Kim I am glad to hear you have that person already.

    I will never tell anyone what to believe in however I personally do believe in miracles and angels. I am not sure which is worse having to wait or just running in and getting it done either way it is for a brighter future and a chance to keep on keeping on. I prefer to be the rolling rock that never collects moss. Plus in my case I crossed paths with a miracle worker at the top of his game and so I am beyond thankful it all happened when and where it did.

    Please remember to breath and don't stress yourself out with trying to take too much on all at once. I am wishing and hoping that you have a super successful and smooth surgery. Will you still have a kidney to operate with like my high school soccer teammate that is 2 years older than myself and is rocking it well past the 5 year remission mile stone?

    Science and technology are advancing at such a faster pace lately that from the time I was diagnosed to 4 years later I was having radiation therapy that was not available on NYE 2014. Then I just went through a second round last year after chemo and immunotherapy because they are finding that is aids in accelerating the efficacy of the chemo & immunotherapy. Very minimal side effects as well.

    Sorry to blab so here is to another beautiful sun shiny day and wishing the best for you both today and everyday after. Take care

    P.S. Kim please never stress or worry about something that might or might not happen with any treatment as the best focus is just taking care of yourself and listening to your body so you continue to be strong and can take on anything that comes your way and hopefully nothing ever will after this;) Here is to wishing you both smooth sailing.

  • MI60
    MI60 Member Posts: 15 Member

    The scientist are making huge strides is xenotransplantation . The last person died of a heart attack not as a result of the pig kidney failure. At this time the program is only using folks with other serious End of life issues. As so many people face the need for not only kidney but also heart transplants this is real hope.

  • MI60
    MI60 Member Posts: 15 Member
  • klarsen316a
    klarsen316a Member Posts: 16 Member

    No, it’s a very good hospital for cancer patients but they offer all areas of support for their patients, including massage, acupuncture, chiropractic, a salon for wigs and eyelashes. They are very renowned in the cancer research area too.

  • DanF
    DanF Member Posts: 12 Member

    I have been following that closely as well. Cananda and the UK at one point were showing more promise for a bio-mechanical kidney and/or stem cell using our own cells to grow a kidney. It is super exciting and I hope to stick around to see it or be a part of it. I have already broken all the ceilings and limitations to where my options bucket may be running on low and possibly empty which I may be one of the serious end of lifers here shortly. My oncologist thought the writing was on the wall last year around this time due to prolonged periods of voiding blood like currently except this time I am having flank and back pain on top of it and most likely from the tumors so no easy fix. The thought is to go back on chemo and immunotherapy again and thankfully my providers are having a meeting of the minds since they all know each other so well and are willing to share their personal time to work on my problem together since being a living donor puts me in a unique predicament.

    Also I am so lucky because my PCP is out of this world unlike any other and sadly they did break the mold after him and his generation of greatness. Now most are about pushing the pills and drugs because they are on commission even though some of those providers will still simply do the right thing because that is why they got into medicine in the first place and sadly others don't. At the Mayo Clinic I under the impression that they are all on a salary and hopefully it is well above and beyond the others because they each deserve it for the work and positive production they provide to the world.

    I just spoke to a friend from high school that I lost touch with and the first thing he said when he found out I had cancer and went that was shouting of excitement because his wife just overcame her own person battle with their aid in Rochester MN and they currently live in South Carolina.

  • MI60
    MI60 Member Posts: 15 Member

    oh ok. I’m in New Jersey and have to wait till after surgery to talk the Nephrologist about a dietician. A lot of unknowns but keep your chin up look forward not backward. Your situation is unique to a small group of great people sacrificing for others and you will get a kidney and with Gods grace it will be so.

  • DanF
    DanF Member Posts: 12 Member

    Kim I hope you do not see Abishek Tripathi. This guy used to be at OU Health in Oklahoma City and he is a living nightmare and liability before he skipped out of town and last I heard he was going to end up at the City of Hope out in California. I hope that is not the same place. My infusions were not administered on two separate visits because he and the pharmacist both had no clue what they were doing. The pharmacist even came to the exam room and started crying on the follow up visit because it was the second 3 hour round trip drive I made and still was not getting the medicine I was expecting to be receiving. Sad how I should have been the one crying for being treated like that in the middle of my chemo and immunotherapy treatment.

    Otherwise I hope you do have an amazing provider and that this bad actor does not impact anyone else like he tried with me.

  • MI60
    MI60 Member Posts: 15 Member

    I know FDA controls what gets approved I feel they need to butt out! If a Doctor finds a trial and the patient understands the risk than the FDA should as I stated buzz off. I give regular as I can to St. Jude. St. Jude saved my sister life when she was a baby and today at 56 she’s well. I have always advocated for more cancer research, reducing harmful chemical in food. So I feel the FDA is antiquated and riddled with politics and corruption. It should be totally revamped top to bottom.

  • klarsen316a
    klarsen316a Member Posts: 16 Member

    That’s definitely a nightmare! I’m in the suburbs of Chicago and that’s not my doctor, thank goodness! My doc has been doing his work for 20 years. I’m comfortable with him.

  • DanF
    DanF Member Posts: 12 Member

    I am so glad to hear that.

  • MI60
    MI60 Member Posts: 15 Member

    glad to chat with you guys. Stay in touch let me know how your doing or just want to chat.