Has your oncologist or cancer team member ever downplayed side effect

Posted by jwkelly72 @jwkelly72, Jul 20, 2023

My oncologist routinely speaks of hair loss as a chemo drug side effect but never the serious possible ones. Really annoys me that if I don't do a thorough info search that I could get a life threatening side effect or life changing . And it's not like any side effect is positive.

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Compared to other side effects and issues, losing my hair was so insignificant!

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I totally disagree! The nurses, doctors and all other staff I was attended to the 3 months in hospital were wonderful. They showed genuine compassion and respect for me. I live in Canada and I have nothing negative to say about these professional, kind people. It must be difficult for them at times having to deal with negative, miserable patients. They deserve respect!

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@doglover888

I totally disagree! The nurses, doctors and all other staff I was attended to the 3 months in hospital were wonderful. They showed genuine compassion and respect for me. I live in Canada and I have nothing negative to say about these professional, kind people. It must be difficult for them at times having to deal with negative, miserable patients. They deserve respect!

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I spent from March 1990 -end of June 1991 in hospitals and rehab and those doctors, nurses and therapists were incredible. I spent 4 days in the hospital during heart attack surgery during June 2019 and most of the doctors and all the nurses were great. I spent from September 2022-November 4th 2022 in hospital and rehab and only the ICU nurses were caring. The doctors, nurses, therapists indifferent, incompetent and even whining. They don't deserve respect automatically because of Covid but by actions. Here is an example. I developed a life threatening infection and told my rehab nurse for 1 day in a half that I was in increasing pain and dismissed it because " it was the weekend" Sunday Night she mentions I could go to the emergency room if I wanted. While on the stretcher she doesn't have concern for me but her hours of work for the upcoming week. That is just 1 example of dozens of pathetic behaviors I experienced. Also included, surgeons commiting petty theft, disrespect for my religion, failure to communicate about feeding protocol resulting in me getting sick, infected...

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@doglover888

Compared to other side effects and issues, losing my hair was so insignificant!

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Yeah absolutely. You vomit, cramp, lose weight,get fevers, get infections ,pain..but oh my God you're going to go bald. I bought a collection of hats, just like a new collection of clothes because of the weight loss and for feeding tube comfort. And my hair didn't fall out in fact it got healthier with my cleansing of toxins in my scalp because of my new diet. Go figure.

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@jwkelly72

Now that's a proper doctor, but I'm sorry that you have been carved up like that and more on the way. Blessings and peace to you.

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Yes, I'm very blunt with them and I expect the same from them. My surgeon actually used robot assisted surgery so only had 3 very small cuts and an about 3 to 4 inch incision where he actually pulled my kidney through. Didn't have much pain at all not like the old fashioned surgery! I don't really think about what's coming down the road, I just live every day as normally as possible. I lean heavily on my faith and that is giving me the peace and the strength to get through all of this. Thank you so much for your support and prayers. God bless you! 🙏🤗🥰

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Yeah, my faith got me through my 4th feeding tube surgery: signed a DNR after 3 botched surgeries, feeding and post surgery infections. Put my Christ cross wrapped in my hand and trusted that live or die things would be fine. First person in recovery was a volunteer priest which was the best thing for me. God always gives you what you need when you need it.

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@jwkelly72

Yeah, my faith got me through my 4th feeding tube surgery: signed a DNR after 3 botched surgeries, feeding and post surgery infections. Put my Christ cross wrapped in my hand and trusted that live or die things would be fine. First person in recovery was a volunteer priest which was the best thing for me. God always gives you what you need when you need it.

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jwkelly72, I don't blame you one bit! I have had Gastroparesis (paralysis of the stomach) for over 20 years and have lost over 30 pounds in a month more than once from lack of food and vomiting. I have told my Gastros that I will not have a feeding tube after seeing what my Gastroparesis friends have gone through with them. One of them died this spring at the Cleveland clinic after years of repeated infections and surgeries. His name was David and he was one of the most positive and strongest people I've ever known. His faith was unshakable and I know he's with Jesus no longer sick or in pain. So, you do what you know is right for you because nobody knows what you are going through but you! My thoughts and prayers are with you girl and God bless you!

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i had 28 radiation and 6 chemo treatments between nov 29 2022 to jan3rd 2023. i did not lose any hair but i did lose 45 lbs. for me the surgeries were much harder. my first surgery was feb 20, went well, i was able to get home after 9 days but i had a breathing issue and had to go back to hospital the same day i was released. my esophagus leaked into my right lung. so they had to perform an emergency surgery on march 4 when they detached my esophagus and stomach, cleaned out my right lung (debraided?), installed a fistula and a jtube. i have not eat real food since then. i was supposed to have my 3rd surgery today but it was postponed until sept 8 because the plastic surgeon went on vacation to cape cod. i am having issues with the tube feed food as it makes me extremely nauseous. we have changed the brand but nothing helps except oxycodone. my lung efficiency is at 49% so i get fatigued easily. i am on tube feed 10 hrs a day then water for another 7 hrs at night. but-i plug along, i have gained back 18 pounds, my last cat scan shows no cancer in my body,, AND I AM STILL ALIVE!

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