The Lesson I Learned

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blainejennifer
blainejennifer Member Posts: 1,848
edited April 2017 in Stage IV/Metastatic Breast Cancer ONLY

I have a friend who had been dealing with Stage 4 prostate cancer, and he was doing well. But, he died two days ago.

He had renal failure from chemotherapy. He was a very private man, and didn't alert his medical team that he was feeling poorly, as 7 weeks ago he "graduated" from chemo and was sent home and told to come in in three months time to check on his remission.

Here's a link to read up on chemotherapy induced renal failure: http://news.cancerconnect.com/kidney-damage/

Renal failure can be addressed if caught early enough. My friend didn't let anyone know until he had advanced kidney failure. His best friend thought he sounded a bit confused during a phone call, so she took him to the oncologist, where he had a seizure. They sent him straight to the hospital (next door, luckily), but it was a losing battle.

Damnit all. He was in remission. He had time left.

So, read the article and familiarize yourself with the symptoms of renal failure. Really, any time you feel sick for longer than three days, check in with your medical support team. They want to know.

He would like to know that he was helping us gain wisdom. That's how he rolled.

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited February 2017

    Blainejennifer, I am sorry for the loss of your friend. It must be painful to know that things could have ended differently if he had sought help earlier. Thank you for posting this link. It is important for all of us to be aware of the symptoms of renal failure. Sometimes we dismiss symptoms we are having, thinking they are of no consequence. Your post is a reminder to us that it is never wrong to call our doctors if we experience troubling changes or symptoms. My MO has made it clear to me that he and his team are always available if I have concerns or questions. When in doubt, call.

    Hugs to you from, Lynne


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  • Heidihill
    Heidihill Member Posts: 5,476
    edited February 2017

    I am sorry for your loss but grateful for this link in his memory.

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited February 2017

    Echoing Heidihill's words about the tragedy of your friend's passing, and appreciation for your information.

    Indeed, chemotherapy can cause damage to the liver, lungs, heart and kidneys, and all patients should be periodically monitored. This is an excellent link describing more about this issue. http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/cancer-drugs/side-effects/your-kidneys-liver-heart-and-lungs-and-cancer-drugs

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  • cliff
    cliff Member Posts: 290
    edited February 2017

    I have had a couple of kidney problems, and one symptom is an extreme "brain fog" keeps you from thinking logically, might be why he didnt notify anyone.

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited February 2017

    Cliff,

    We think so too. I'm going to suggest to our shared Oncology practice that they identify patients that are living alone, and put them into a cohort that gets extra oversight. You know, more check in phones calls, etc.

    It doesn't have to be an expensive intervention. S's condition could have been discovered by talking to him on the phone. Simple questions like: "How are you feeling?" or "What's your urine output been like?". The same questions we get asked before treatment, but S was out of treatment and had been sent home with no further appointment for 3 months (!!!).

    Oh, Lordy. I'm still angry. He was in a complete remission.

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited February 2017

    blainejennifer, I can feel your pain thru your words. I can understand your anger at the unfairness of a loss of life of someone you were close to that came before it really had to. You have my condolences on the loss of your friend. I appreciate the link you provided on renal failure amd also the advice to seek medical treatment if we find ourselves feeling poorly for three days in a row. Many hugs to you.


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  • dlb823
    dlb823 Member Posts: 9,430
    edited February 2017

    Just came across this thread. I'm so very sorry about your friend, blainejennifer. But thank you for sharing what happened to him. It's clearly a life-saving lesson for us all. I'm just so sorry he didn't survive his episode. Hugs, Deanna

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited March 2017

    Blainejennifer, I'm so sorry for the tragic loss of your friend. Your posting his story here may save someone's life in the future.

    Your idea about phone calls to patients who live alone is a very good one. Maybe even nursing students or retired medical personnel could be asked to volunteer for a shift if the hospital has staffing issues. They could connect the patient to caregivers if there is anything to investigate. (This could include referrals to support services as well.) And it is not hard to give people a fridge magnet with a phone number, and a list of symptoms, with instructions to call if they have any concerns at all.

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  • JFL
    JFL Member Posts: 1,947
    edited March 2017

    That is such a terrible and "wrong" story/outcome! It is gut-wrenching to hear that he was in remission with Stage 4 and died of a treatment-related issue, particularly since it could have been prevented. Thanks for sharing as it is good for all of us to keep this in the back of our heads. I am sorry for your loss of your friend.

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited March 2017

    This is such a sad story.I think of how man people are so afraid to "inconvenience" their medical team with something that may be a false alarm so they just don't go. When I was on the high dosage of vibrance last year I was in the middle of a store and suddenly felt very light headed and short of breath and nauseous. After reading all the literature about blood clots I went to the ER. They had a "roll the eyes" reaction and went through the motions with an obvious attitude. It can be humiliating.

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  • dlb823
    dlb823 Member Posts: 9,430
    edited March 2017

    Wow, artist! I can't believe you, as a Stage IV woman on a newer medication, got attitude in an ER! Shame on them!

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  • cliff
    cliff Member Posts: 290
    edited March 2017

    I started having blackouts after I got ready for work in the morning about a half hour after taking my meds. got sent to a neuroligst, who said I had epilepsy. turned out to be one of my meds, carvedilol has that side effect in too large doses . cut from 35 to 3.5 mg dose and no more trouble. they almost took my drivers liscense away over that.

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited March 2017

    Deanna, I even waited a day until I was POSITIVE I was not feeling "right" until I broke down and went in. I was so completely PISSED OFF that they had the attitude too! You try and do everything to advocate for yourself and follow instructions and get that crap handed to you. I felt like saying "You try walking in my shoes buddy"! I've always been a mellow, not make waves kind of person. But this new reality is making me a little more pushy and snappy that's for sure.

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited March 2017

    I agree with all of you who have had to learn to be aggressive with your medical concerns. I got myself into this mess years ago by believing a radiologist who kept repeating "There's no cancer there." during ultrasound, after mammography didn't show my lump.

    Yup, I had very dense breasts. But NO ONE told me to go for a tissue biopsy. And NO ONE told me to check back in 3 or 6 months. I took myself back to the doctor after three months because my breast had gotten hard, then my nipple inverted. I should have been faster, but the radiologist had seemed so sure that there was "no cancer there".

    I feel guilty too because I was so happy about being cancer-free that I just closed that box and put it away.

    We have to be pestiferous with our needs and concerns. It's hard to do, as most of us have an unconscious desire to be "good girls" and not to make waves. Well, maybe not most of us. I hope the younger gang here has put those attitudes into the dustbin of history, but I'm over 50 and came up in the South. Asking for what I need is hard. Subconsciously being irritated with someone for not giving me what I couldn't ask for, however, is easy as pie :)

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  • stagefree
    stagefree Member Posts: 2,780
    edited March 2017

    great advice Jen, thank you!

    Love

    Ebr

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  • Sue2009
    Sue2009 Member Posts: 228
    edited April 2017

    great share Blainejennifer. I too was misdx, which lead to at least a 6 month delay in treatment & bone mets when finally diagnosed.

    I also had an experience years ago where I met a family friend at her radiation treatment. She was having a difficult time breathing. I asked for the nurse to check her O2 sat, that was the nurse in me, & it was in the 80's, I told her daughter she needed oxygen, & needed to call her MO. It took days to get her home oxygen, I could not believe her daughter wasn't more aggressive.

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