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Has anyone had this before? What are the side effects? How does it compare to Fluorouracil which I have had before with no side effects. Thank you for your feedback. Gina
@earscan, you were lucky not to have side effects with fluorouracil (5-FU). Other members who have had cisplatin chemo treatment like @merpreb @margot @alpaca @weebiscuit and @mira24 found it to be particularly challenging on the sense of taste and other side effects. Keep in mind that everyone is different. Most people do not experience all of the cisplatin side effects listed in this article but it is good to be aware of what to prepare for.
– Cisplatin http://chemocare.com/chemotherapy/drug-info/cisplatin.aspx
If you have other conditions or complications, your team will closely monitor the side effects and things like your kidneys and numbness in the hands and feet (peripheral neuropathy) and low blood counts or platelets. If necessary, they will adjust the dosage.
Gina, when do you start chemo?
Thank you Colleen. Nothing has been decided yet because of the para-aortic and cervical lymph nodes which they are in the process of biopsying the cervical but can't get to the para-aortic. It will change how the radical hysterectomy is done. Not so sure I want to go thru all of this again! Thanks for your feedback. It is appreciated!
@earscan– Good morning. I had cisplatin for lung cancer in 2007. I'm sorry to tell you that it's very rough on the digestive system and did lower my blood counts. But it is great chemo. What I did was take lots of antacids and I had an anti-nausea pill that I took as soon as I got home. It also made me very tired. You've had chemo before so you know what that feels like.
Were you told that this is one of the chemicals that you will have? When will you begin chemo?
Thank you Merry. I had fluorouracil before with the chemo port and had no side effects. The side effects for cisplatin just were alot. I always swore if my cancer came back, I wouldn't go thru this again and it is all so confusing. I sit her feeling normal today, but after everything, when will I ever feel normal again? The only people who really understand are the ones who have gone thru it, Someone the other day said "what's a little chemo and radiation to interrupt your day compared to the alternatiive?" Forgot the surgery and the lymph nodes and more surgery and maybe not being able to get to the para-aortic nodes. My quality of life is really good right now!
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@earscan– After cancer, which changes a person's perspective on life in general, I think that we have a different normal. There's no going back to before because you have had a life-threatening illness. After my first cancer, I never got over my fear of another one, not knowing that I would have many more. That's not to say that I go around thinking about it all the time. But it's there, like a Jimminy Cricket with a negative 'tude!
I recently, on another site, chatted with a gal who has decided against having a lung transplant. She has end-stage COPD. The main reason, she said, was because she didn't want to be a burden on her family because the recuperation and need for specialized care would be too much.
It sounds as if you have decided to stop your treatments, or am I wrong? Your good quality of life that you feel right now will change as your cancer spreads. If I'm correct in understanding your decision can I ask what your family has said about this? It's an extremely difficult, but brave decision. How long have you felt like this?
my family said so far, go with the "quality of life." I have yet to start these treatments, but I had cancer before. I swore I would never do this again. If my biopsies are positive, then I'm out. If surgery can do it, I might consider it, but chemo and radiation are really bad for a blue-eyed redhead. Last time I had burns everywhere. So I am at peace with it. And you're right, you are always waiting for the other shoe to fall. Thank you for your very honest feedback! You're the best!
Yes, they said if my lymph nodes were positive, that's what I would have. My biopsies are Dec 2nd and I find out Dec 8th. If surgery is good, I'm in; otherwise, I'd rather get on my boat and go down the St. Johns River and wrestle with my little granddaughter while I can!
Good morning @earscan– I keep thinking what I would have said in response to "what's a little chemo and radiation to interrupt your day compared to the alternative?" Of course, I would have been shocked and maybe not have a quick come-back. But it would, to me anyway, need a comeback, because it is incentive and flippant.
It really is difficult to talk to someone who has never had cancer. I think that this is so because cancer makes you think very deeply about your life and the end of it. If you aren't faced with this then your thinking is on a different plane. So my come-back would have to be something like, "but those are my realities and I know that it's difficult to understand." Of course, in reality, I'd want to say a lot more but we need to educate people so being flippant, as she was, wouldn't help. I have a friend who talks like this. I'm careful with what I share with her.
I'm glad that you're family is behind you. I think that when the time comes mine will be too. Please keep me in the loop with your biopsies. Sailing to see your grandaughter sounds like something you might want to do anyway!
Thank you, Merry! Your response was so good! The whole process is long and arduous and I think I will do what you suggest – just not share. This is a quick-fix world, how soon, when, why wait, etc. It is not for the faint of heart and funny thing is, the ones who I thought would be there aren't, and the ones who I thought wouldn't be there, are there is spades. It's just appreciating the understanding we all have of each other as we face this monster! I can't tell you how much Mayo Connect means because the general public doesn't understand Cancer and I would have thought, since it's so rampant, they would. Thank you for your feedback. It is another little gem I'll save in my memoirs of Mayo Connect that make me feel better! Gina
@earscan @merpreb @colleenyoung Gina, Sounds like you already got some great perspective from Merry! Since I had Cisplatin in 2018 I thought I'd add my 2 cents. I just checked my file because I couldn't remember what it was given with- it was Cisplatin & Pemetrexed for 4 cycles following lung resection surgery. That combination was known to be better tolerated than others and I can testify to that. I never got worse than some ear ringing and a hangover feeling that was managed with just one of the 3 meds I had available, along with some extra rest and getting outdoors for some gardening (great fresh air/exercise combo.) So, you may want to ask your docs more questions on what you more likely could expect.
@bluelagoon– It's so great to hear from you! I love it when you put your 2 cents in! I had cisplatin in 2007 and was not offered to me. I had it with Navelbine (targeted chemo). I went twice a week for 4 months. I am so glad that you had an easier time than I did.
I think, @earscan that @bluelagoon offers great advice about contacting your doctor regarding the chemo protocol and the infusion nurses when the time is right. Also, I would suggest that you write down every single question that you have and bring it with you.
Thank you so much for your replies. I had fluorouracil last time for my cancer and had no side affects. I decided to get a second opinion on this because I cannot tolerate any pain meds and am very sensitive, being a blue-eyed redhead. On top of a radical hysterectomy, the cisplatin could have side affects, but maybe not; however, I checked and the fluorouracil is an adequate substitute so not sure why they are sayings it's my only course of action. It's a terrible burden actually when you have worked in the healthcare field for 40 years LOL!
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