oldgreycoach's Journey with Kidney Cancer

Patient: Kidney Cancer

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 7 years ago, Male, Age: 67

  1. 1
    almost 6 years ago
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    Cancer is back/Recurred

    Oh No

    May of 2010 the lower back pain turned into Kidney RCC surgery just before Memorial day. Febuary 2011 the pulled muscle in my leg gets a MRI Cancer is back in the bone (femur) one titanium rod and 10 days of radiation and we are good to go. 9/1/2011 Next set of Scans in August and its baccccck in the kidney still working on the treament for that looks like IL2 at Beth Israel if i can get accepted. 10/17/11 BI appointment in 2 weeks to see about IL2 treatment. I dont like having a experation date and hopefully this treament will work.

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  2. 2
    almost 6 years ago
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    Surgery

    Procedure or Surgery

    partial nephrectomy (SP) was laid out for 7 weeks and to this day still have pain in the scar tissue.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  3. 3
    almost 6 years ago
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    Surgery

    Procedure or Surgery

    Had the femur reinforced with a titanium rod from my hip to knee then radiation on top of it. Will never be as active as i was beofre this started but at least im still vertical.

    Went as Expected: Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
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  4. 4
    almost 6 years ago
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    External radiation

    Radiation

    Went through this easily the radiation team was fantastic, I know 10 days wasnt a lot and there were a lot of other folks in that waiting room who were in worse shape. The only problem i had was the tiredness.

    Painless Experience: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  5. 5
    almost 6 years ago
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    Clinical Trial

    I hate the waiting !!!!! Spent the last two weeks getting poked, prodded, CT scanned (beginning to hate the hold your breath guy). Only too have to spin my wheels while I get approved for the trial. I want to be doing something, not waiting :-(. On the good news side the cancer has not spread outside the kidney and I still have a brain at least one showed up in the scan.......

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  6. 6
    almost 6 years ago
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    Clinical Trial

    Finally started a clinical trial on tivozaniv, 4 days into it and the worst side effects I have had is worrying about side effects. Blood pressure has gone up a bit and I have a bit of a sore throat but so far so good. This drug prevents new tumor growth by preventing new blood vessels from forming, its also been shrinking tumors size in other folks in the studies. The team at Beth Israel in Boston have been super in discussing options and getting me ready both physically and mentally for this trial. Go little white capsule beat that big C

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  7. 7
    almost 6 years ago
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    Clinical Trial

    End of cycle one 5 more to go. Side effects from the tovozanib are not to bad, some shortness of breath and a bit of a sore throat. Blood pressure is bouncing around a bit but they are using meds to control it. After the next cycle i get scanned head to knees to see if 1) there are any new tumors and 2) the tumors in my Kidney are shrinking a no and a yes would be a great way to start the new year

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  8. 8
    over 5 years ago
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    Clinical Trial

    Cycle 2 of the trial for tivozaniv things are going good minimal side effects, lack of energy, night sweats and a bit of blood pressure. First set of scans in 2 weeks to see if the tumors in the Kidney are shrinking. Also went to the Ortho docs to check the hardware in the leg all is well there as well.

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  9. 9
    over 5 years ago
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    Clinical Trial

    Good news from the cancer docs at Beth Israel. The trial drug appears to be working there are no new tumors to be found and the existing ones are shrinking........ Next set of scans ant tests are in March and hopefully the results will be better.

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  10. 10
    over 5 years ago
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    Cancer is back/Recurred

    Oh No

    Once again I have stymied modern medicine., After 4 months on Tivozanib with 2 good scans the last set showed cancer in my liver and in one other place. So long story short I am off the study drug, plan B is to go to a different class of drugs that attack the cancer via another path. Got a full day of test and scans coming up to make sure I qualify for the new study if not the I will go on a generic version of what they are studying.

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  11. 11
    about 5 years ago
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    Financial

    Other Care

    One of the things that I have had time to do is go through all of our finances, and work out a plan going forward for my wife. We had a lawyer that we trust set us up with a financial management firm and a financial planner. Both of them went of and worked out what it would take to keep her living at our current lifestyle spending. Both came back with figures that were pretty close and easily obtainable with our current assets and insurance. We also found that there are 4 loans I had that will be paid off due to me inadvertently checking yes to life insurance on all of them , one of then was for well over 100k. In going through all the paper work hanging around in drawers and file cabinets we found old records with my SSN as the account number "Hello Shredder". One of these documents was paperwork on a security clearance that not only had my stuff but a whole lot more on relatives and friends. Advice here, sick or not, take the time to clear all of this stuff out a cheap shredder is worth it, I realize that my SOC goes away when I do but on a lot of older stuff like TAX returns from 1992 ...........

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