1. < Gynecologic Cancers

Cisplatin: What was your experience on this drug?

Posted by tjperry @tjperry, Jan 31, 2023

I went to pick up my prescriptions from the pharmacy for my treatment of endometrial cancer that starts next Monday. The pharmacist asked what chemotherapy drug they are using on me. When I answered with Cisplatin she said, " if I was diagnosed with cancer I would never ever use that drug. It is an awful, awful one!"

Thanks, you who is suppose to be a health care professional. Why in the world would you say that to someone???

So now I need to know how bad this treatment is going to be? I am having it twice during my 5 weeks of radiation. Once at the beginning and once right after I finish.

Anyone who has received this as part of their treatment I would love to hear from you!

Even after she completely shocked both my husband and I with her comments.....I am choosing positivity regardless of how bad the drug is. The doctors wouldn't be recommending it if they didn't believe it would help me in the long run. Just want to hear some other's experiences so I can prepare myself!

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

tjperry | @tjperry | May 26, 2023
In reply to @bunyipbaba "New to this group. I'm 74 and recently diagnosed with primary vaginal cancer thought to be..." + (show)
@bunyipbaba

New to this group. I'm 74 and recently diagnosed with primary vaginal cancer thought to be the result of HPV 16 and many years on prednisone to treat fibrotic pulmonary sarcoidosis. I am scheduled to start treatment next week, and I am struggling to make a final decision about what treatment method to embark choose. I am scheduled for 35 IMRT treatments 5 days a week for 7 weeks. The overwhelming issue for me is whether to have weekly low dose cisplatin concurrently. The side effects terrify me. My quality of life is already seriously compromised because of O2 dependence and 27 years living with the slowly increasing limits the pulmonary sarcoidosis imposes. I absolutely do not want to come out of treatment far more compromised (neuropathy, additional hearing loss, etc.) then I am now. I would appreciate any input since this is such a rare cancer (NOT the lottery I hoped to win) that all treatments must be extrapolated from cervical cancer treatments. There are never enough patients to conduct any randomized treatment trials on vaginal cancer. Thank you for your patience.

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I just now noticed that no one ever responded to your entry. Did you make a decision on your treatment? I can imagine that it was a difficult one to make because of your additional health problems and not wanting to cause further problems with your quality of life!

I am in hopes that your doctors guided you in the correct direction after considering your health situation!

How are you?

Thinking about you and praying for you!
❤️🙏❤️

REPLY
1 reply
bunyipbaba | @bunyipbaba | May 27, 2023
In reply to @tjperry "I just now noticed that no one ever responded to your entry. Did you make a..." + (show)
@tjperry

I just now noticed that no one ever responded to your entry. Did you make a decision on your treatment? I can imagine that it was a difficult one to make because of your additional health problems and not wanting to cause further problems with your quality of life!

I am in hopes that your doctors guided you in the correct direction after considering your health situation!

How are you?

Thinking about you and praying for you!
❤️🙏❤️

Jump to this post

Thank you, tjperry, for your response. The national shortage of cisplatin made the decision for me. I will have my sixth and, hopefully final, Carboplatin infusion on Tuesday followed by an additional 7 radiation treatments for a total of 33. I had to get IV magnesium this week and am on a supplement now to try to avoid having to delay the chemo. Since I understand that the Carbo is to act as a radiosensitizer for the radiation, the dose is fairly low and, thankfully, I have tolerated it so far.
Despite my best efforts to eat, I have lost a lot of weight. Then, just to keep things interesting, my whole family and I came down with Covid after managing to get through the entire official pandemic unscathed. Fortunately, my treatments continued uninterrupted.
Because I am getting pelvic radiation 5 days a week, pain management in my vagina, urethra, and rectum is a challenge as is controlling the diarrhea. Regardless, I am grateful for the doctors and nurses who are so crucial to the treatments. They are kind and eager to help. I was told today that I will need to use vaginal dilators when the treatments are over. Another new adventure!
I imagine there is not one of us who does not live with the fear of cancer returning and of unforeseen long term/late effects of the poisons used to treat this disease. I understand that neuropathy is always a concern and hope that the acupuncture continues to help yours. Thank you again for your prayers and concern. I will continue to hold you in my thoughts.

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1 reply
tjperry | @tjperry | May 28, 2023
In reply to @bunyipbaba "Thank you, tjperry, for your response. The national shortage of cisplatin made the decision for me...." + (show)
@bunyipbaba

Thank you, tjperry, for your response. The national shortage of cisplatin made the decision for me. I will have my sixth and, hopefully final, Carboplatin infusion on Tuesday followed by an additional 7 radiation treatments for a total of 33. I had to get IV magnesium this week and am on a supplement now to try to avoid having to delay the chemo. Since I understand that the Carbo is to act as a radiosensitizer for the radiation, the dose is fairly low and, thankfully, I have tolerated it so far.
Despite my best efforts to eat, I have lost a lot of weight. Then, just to keep things interesting, my whole family and I came down with Covid after managing to get through the entire official pandemic unscathed. Fortunately, my treatments continued uninterrupted.
Because I am getting pelvic radiation 5 days a week, pain management in my vagina, urethra, and rectum is a challenge as is controlling the diarrhea. Regardless, I am grateful for the doctors and nurses who are so crucial to the treatments. They are kind and eager to help. I was told today that I will need to use vaginal dilators when the treatments are over. Another new adventure!
I imagine there is not one of us who does not live with the fear of cancer returning and of unforeseen long term/late effects of the poisons used to treat this disease. I understand that neuropathy is always a concern and hope that the acupuncture continues to help yours. Thank you again for your prayers and concern. I will continue to hold you in my thoughts.

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So great that your treatments were not interrupted by COVID. I think that really says something about how strong you and your body really are! It sounds like your medical team is so good for you! I will pray for the supplements to help get you to the end of your treatments without any interruptions at all! God Bless You! ✝️

REPLY
wurd | @wurd | Dec 21, 2023

I had several rounds of IV cisplatin at Mayo back in 2004. I had immediate nerve damage (tingling in my lower extremities) which subsided after a while but came roaring back 18 years later as debilitating neuro issues with regard to leg pain, ability to walk, and leg weakness.

I did so well for many years so this recent development really has me feeling depressed because I cannot sleep, work or enjoy leisure activities. But hey, I had many good years so I'm grateful for those.

My hope that is some day scientists will develop treatments that are kind, gentle and very affordable.

REPLY
1 reply
bunyipbaba | @bunyipbaba | Dec 22, 2023
In reply to @wurd "I had several rounds of IV cisplatin at Mayo back in 2004. I had immediate nerve..." + (show)
@wurd

I had several rounds of IV cisplatin at Mayo back in 2004. I had immediate nerve damage (tingling in my lower extremities) which subsided after a while but came roaring back 18 years later as debilitating neuro issues with regard to leg pain, ability to walk, and leg weakness.

I did so well for many years so this recent development really has me feeling depressed because I cannot sleep, work or enjoy leisure activities. But hey, I had many good years so I'm grateful for those.

My hope that is some day scientists will develop treatments that are kind, gentle and very affordable.

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Thank you, @wurd, for your response to my earlier post. I'm surprised and sorry that, after 18 years, your neuropathy came back to make your life more painful and difficult. I have read, again and again, that the side effects of chemo and radiation can recur months and years after treatment stops. I finished my chemoradiation (6 cisplatin infusions and 33 pelvic radiation treatments) for vaginal cancer in June and am finally feeling what I consider to be my new normal. I will see my gyn-onc every 3 months for 2 years and my gyn radiologist every 6 months. I have been very lucky that, so far, my side effects have been "as expected" and, on the whole, I tolerated treatments well. However, the awareness and fear of neuropathy and, of course, recurrence of the cancer, is always with me. After 18 years, you could rightly think you were out of the cancer side effect woods. Of course you feel depressed and blindsided by this unexpected late effect. I hope your team at Mayo will suggest treatments that can improve your quality of life and relieve your pain. I will hold you in my thoughts and I agree with your hope for kinder, gentler, more affordable cancer treatments going forward.

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