Chemo

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Hello, 

I was diagnosed with heart failure back in 08/2023 with a recovered EF of 50-55% as of 2024. I was also diagnosed with sebaceous carcinoma adenoma of the scalp in  12/2023 and had it removed (which was a gruesome surgery) it was a very large tumor that was kissing the skull. Had pinpoint radiation therapy everyday for 6 weeks starting in 01/2024, and then in 07/2025 was diagnosed with stage 3 endometrial cancer, and had a complete hysterectomy including, both ovaries, fallopian tubes, cervix, uterus, and had to do some burning on the colon, as it was pushing up against it. Started carbo platin, taxol and keytruda in 08/2025 for 8 hours every 21 days, my last infusion of chemo is coming up in December, but I am to continue the keytruda for another 2 and a half years every either 3 or 6 weeks. I am 36 and the surgery led me to surgical menopause also. I have lynch syndrome, muir tore with mismatch repair of H2SM and H6SM, I may be putting the letters in the wrong order. Sorry lol, 

My question is about my heart. I did some research that told me my cardiologist was suppose to preform an echo complete strain on me before I started infusions, to see a baseline, However, she did not, and didn’t have one ordered until I kept complaining about symptoms I was having and a couple of trips to the ER. I at the time wasn’t aware that chemo had any effects on the heart, but I was very ill, and my pressure was all over the place. At one point they had believed I had HBP put me on meds, and then low BP and took me off the meds. My heart rate no matter is always high, and sitting in the 110’s. When preforming the echo stain, it was revealed that my GLS was at -14.86% my cardiologist said that could have always been that way, we will repeat the test every 3 months and compare. Well, I continued to have symptoms and begged to have another one after 2 more infusions. The results came back that my GLS is now -12% within a months time. My cardiologist is fine with me continuing treatment, and is unbothered by the results, but I am bothered and wanted a second opinion by someone who is in the medical field as all of my specialist belong to the same hospital and sometimes I think they’re all in cahoots with one another and I have a hard time trusting them, as I complained for months about abdominal pain and many red flag symptoms of the endometrial cancer, and was told to take stool softeners, I begged for a CT and the results from that CT said everything was completely normal. That’s a whole other story, but obviously later found out it was stage 3 and very much thriving. So my trust is broken with them, but am too involved with care at this time to try and start over anywhere new. I hope this isn’t too much, and that you could please spare some insight if any at all. All opinions are highly welcomed and appreciated!! Thank you! 

  • Hello Melisssa717248,

    Thank you for getting in touch with us, and welcome to our online community. My name is Annerose I’m one of the Cancer Information Nurses here at the Macmillan Cancer Support line.

    It sounds like you have been through a lot over the past 2 years, and it’s frustrating to hear you are struggling to get heard.

    I understand your last treatment with Carbo/Taxol and Keytruda is coming up in December, and the plan is for you to continue whit Keytruda every 3 or 6 weeks for another 2.5 years.

    It is not clear if you had the opportunity to discuss the cardiac impact of this combination with your oncologists already, and if continuing with Keytruda as a single agent treatment would make a difference?

    I understand you feel your trust with the team has been broken, but you do not want to start all over again with a new team, however, you would appreciate a second opinion, especially concerning the effects the treatment with Keytruda has on your heart.

    Your concerns are understandable, unfortunately, as cancer nurses on this platform, we’re not able to diagnose or recommend treatments.

    We would recommend to ask your consultants or GP for a referral for a second opinion, to a different hospital and different team.

    This can be to a  cardio-oncologist as well as for the Lynch syndrome.

    There are regional specialist networks for Lynch syndrome in the UK, such as at St Mark’s hospital, Central and South Lynch Syndrome Regional Expert Network, NHS East Genomics. Other units with expertise include the cancer genetics unit at The Royal Marsden Hospital and the clinical genetics department at St George's Hospital.

    I hope this has been helpful, but please don’t hesitate to get back in touch if you need any further information or support.

    Best wishes and take care 

    Annerose (Cancer Information Nurse Specialist) 

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. 

    Ref/ AM/ PW