Cisplatin: What was your experience on this drug?

@bunyipbaba. Hello, and welcome to Mayo Clinic Connect. We aren't medical professionals here however we can give you support.

You've given a comprehensive description of what you are going through and it must have been such a shock to get a diagnosis of primary vaginal cancer. No one wants to hear the diagnosis of cancer from their doctor. I was shocked when I got the diagnosis of endometrial cancer from my gynecologist. In fact, I got lost on the way home and I was driving a very familiar route.

From what've I've read vaginal cancer is indeed rare. It's a lot to deal with especially with the other medical problems you have. I understand why you you'd want treatment for the cancer without compromising your quality of life that is already affected by fibrotic pulmonary sarcoidosis.

Do you feel comfortable with your cancer care team to ask more questions about side effects of your treatments? And also with your other doctors (a pulmonologist?) to get some added information about how low dose cisplatin will affect you? Would you like another opinion from a comprehensive cancer center such as Mayo Clinic or MD Anderson? I would want an opinion from one of these National Cancer Institute Centers where they see and specialize in seeing vaginal cancers.

-- National Cancer Institute
https://www.cancer.gov/research/infrastructure/cancer-centers/find
I have also provided the link to Mayo Clinic. This link provides access to all three campuses of Mayo Clinic in Minnesota, Arizona, and Florida. You can self-refer but it will be more effective to get a referral from your doctor.

-- Mayo Clinic Appointment Requests
http://mayocl.in/1mtmR63
Could you let me know what you decide and what you find out?

Thank you, naturegirl15. I have scoured the websites of MD Anderson, Mayo Clinic, Johns Hopkins, Dana Farber, Memorial Sloan Kettering, etc. and all say the same thing about treatment for vaginal cancer. I tend to cope by researching. It gives me a fleeting illusion of control. This has all happened so fast, and I am being treated at a National Cancer Institute Center in CT. I have reached out to my pulmonologist and hope to hear from her today. I greatly appreciate your support and suggestions. Like tjperry, I wonder what others have experienced with chemoradiation involving cisplatin. Or if anyone has opted to forego the chemo and gone with radiation alone. I will update once my oncologist and I reach a treatment decision. Thank you for your compassionate, informative reply. I read you earlier posts and hope you continue to heal and find joy in your life.

@bunyipbaba. Thank you for your quick reply to my questions. I am like you when it comes to coping. I do lots of research and read from valid and reliable sources as you have been doing. I also cope emotionally by reminding myself over what I have and do not have control. I remind myself to stay in the present too.

I'm sorry I don't have more information about Cisplatin for you. I'm going to tag @val64 who was treated for a different kind of gynecological cancer. She is very knowledgeable and provides well written advice on these types of topics. I will also search our membership in this Support Group and see if I can come up with a few more members I can tag.

I know what you mean about everything happening so quickly. That was the case for me too. It's difficult to make such rapid decisions and it's good that you are getting your care at an NCI.

I am at Mayo Clinic as I write this. I'm here for my cancer surveillance (every 4 months) appointments. I'm pleased to share that the CT showed no evidence of disease. I'll see my provider tomorrow morning but I don't expect the physical exam will change these results.

Will you let me know what you find out from your pulmonologist?

Hello again, @bunyipbaba

I did find one of our members in our Support Group, @miriam57 who has had Cisplatin as part of her treatment for endometrial cancer. I've tagged her here so I'm hoping she will reply to you and tell you of her experience with this chemotherapy agent.

Thank you, naturegirl15, for reaching out to members who might be able to share tips, experiences, and truths about treatment with cisplatin concurrently with radiation. What thankful news that your CT showed NED! I hope the appointment with your provider tomorrow echos that same good news. I met with my oncologist today for the final time before I start treatment on Monday. I had many questions which he patiently (and, hopefully, honestly) answered. I meet with the radiologist Friday for the final simulation and have many questions for her, too. I am waiting to hear from my pulmonologist, but it looks fairly certain that I will be proceeding with the chemoradiation treatments for the next 7 weeks as planned. Thank you for your efforts on my behalf. I will update when I hear from my pulmonologist. I will hold you in my thoughts for continued NED news.

I remember how stressful it was trying to choose a treatment. I don't have any experience with cisplatin, but I just took a quick look at the NCCN treatment guidelines (intended to be read by doctors) for vulvar cancer. It looks like chemoradiation using cisplatin is what they recommend for patients who are not having surgery. So going ahead with what your doctors recommended is probably the right choice. Sending good wishes your way.

Thank you, Val64, for taking the time to respond. I did have surgery 3/10/23 to remove the vaginal tumor, but I know there are no real guidelines for treating vaginal cancer due to its rarity. Apparently, all treatment protocols are extrapolated from existing cervical cancer randomized study results. As I mentioned, I meet with the oncology radiologists today, so I will have to make a decision since I start treatment Monday. Thank you again and I hope you are well.

I had a final radiation simulation today. I also got a call from the oncology team. They informed me that, due to the national shortage of cisplatin, I will be switched to carboplatin for my chemoradiation treatment. It is to be given once a week at a low dose as a radiosensitizer, just as the cisplatin would have been. I'm not sure how I feel about this, but, clearly, it is beyond my control. The nurse did say that, if cisplatin becomes available, they may switch back and forth. Again, not sure how I feel about that either or how it might effect my treatment. Still no word from my pulmonologist. Does this change of treatment plan mean I should no longer post on the cisplatin site? On a totally unrelated topic, it was a stunning spring day with abundant sunshine and a tapestry of shades of green and spring flowering shrubs everywhere. Balm for the spirit. Naturegirl5, how was your visit with your provider today after your CT scan?

Hi,
I had six infusions of Tivdak and did really well except for peripheral neuropathy. We had to stop the infusions in April and the PN keeps getting worse. It's a phenomenon known as coasting. I now have difficulty getting up from chairs and up and down stairs and use a cane for walking.
My last scan showed I was stable and my next one will be in July. Because of the PN I will be unable to do any further Tivdak or platinum chemos. Thanks for your care and concern.

I have been thinking about you and praying for you! Thank you for the update! I am sorry to hear about the neuropathy you are experiencing and that it is getting worse. I will pray that this will get better for you over time!
I'm happy to hear that your scan looks good!!

I am also experiencing some neuropathy during my treatment with Carbo/Taxol. I am receiving some acupuncture treatments that are helping with that, but I have one more treatment on June 6th. My acupuncturist said in addition to "sandwiching" my chemo infusion with acupuncture she would like to add an additional treatment if the neuropathy remains this time. Do you have acupuncture available to you? They have some philanthropy grant money available to cancer patients at the facility that I am at so it makes these treatments much more affordable.

I am nervous because it has gotten worse with each treatment and has started earlier each time. I have heard it can show up months after treatment too.

Do we ever stop worrying about the cancer returning or the side effects showing up later???

God bless you and know that prayers are being said for relief for you from neuropathy!!!!
❤️🙏❤️