I was diagnosed in 2018 with serous adenocarsonoma, stage IIIc,, a very aggressive Endometrial cancer with spread to lymph nodes. A total hysterectomy and “the sandwich” treatment of chemo, radiation, chemo. Declared cancer free by end of year but continue dealing with chemo side effects. The Chemo induced Peripherals Neuropathy (CIPN) is horrible and keeps me up most nights and beginning to affect balance. Working to not try all the snake oil and people out there promising to heal it. also dealing with GI issues & osteopenia. Broke vertebrae twice before that was figured out. Finally off insulin so losing weight, getting healthier in many ways , in physical therapy.
But All this is very isolating and, just like chemo treatments, Im going through this alone. It’s nighttime and I’m hurting. so feeling very sad., exhausted . But .I wish so much I had understood the long lasting side effects of chemo and had been able to advocate for myself to prevent this level of pain.
Thanks for letting me vent. Kicked out of one supposedly support group (not related) for posting a negative and honest with my feelings moment, so I’ll leave it at that. Again thanks for letting me vent. Blessings to you all in your journeys
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I have had recommendations by my doctor and other healthcare providers to try -R-alpha lipoic acid and acupuncture and massage that is specifically for cancer rehab patients. Have you tried anything? I know the neuropathy is miserable. Also, low levels of certain vitamins and minerals including magnesium make my symptoms worse so I try to stay on top of it.
Thank you for responding. yes, tried, can’t afford, tried. Also Essential oils, compression socks, capsaicin stuff, menthol, Vicks, pills for neuropathy supposedly, circulation aide, heat, cold, tens, scrambler, prescription meds. Nothing helps. Try to walk but so exhausted I almost fall several times. Just got suckered again by online lotion promising to cure it. But, again, thanks for caring enough to respond.
Acupuncture worked for me, but the benefits were too short term. So I bought an acupressure pad on Amazon (at the time, it was about $20) and that seems to help. Have you spoken with your doctor? Maybe a different chemo schedule can help.
hi merma. Thanks for your reply. I really do appreciate it so much. It’s different when someone is there who’s walked your same journey, isn’t it? Yes, spoke to doctor several times, even last week… but nothing new is available that he’s aware of, And I’m scanning medical journals and articles, and about any studies or clinical trials from all perspectives. My neuropathy is a pretty severe case, and getting worse. I understand why we had to hit that very aggressive d cancer so hard and in that protocol It was the best treatment option at that point in time I just find it hard to remember that when I’ve been up for days with maybe an hour or so sleep a night, with no relief with intensity
I’m trying to save up my funds to be able to try acupuncture although I have yet to find one that’s treated CIPN specifically . my cancer center is not able or does not offer any of these type treatments so I must find a practitioner on my own also . May I ask if your acupressure was like a pad or flat mat I’d be glad to order one to try I haven’t met someone who actually used one before I wondered if my feet were too sensitive ideas and experiences are always welcome!
Again, thank you for caring and your reply Blessings
I too have endometrial cancer. I am in chemotherapy now experiencing some neuropathy in my hands. However, I completely understand what you’re going through as I have neuropathy in my face, my right shoulder, right arm, and hand from a fall that I experienced in 2015. It is a terrible thing to deal with: very hard to treat and very isolating. I work with a pain management doctor. The things that I try when my neuropathy is unbearable, in addition to medication, are acupressure mats topical sprays and lotions, tens units, heat, ice, red light wraps, and exercises. I am so sorry that you’re in pain. I will pray for you.
Oh my goodness, I forgot to mention 2 items that help when the neuropathy is at its absolute worst and I’m too exhausted to keep walking, or even to think obviously. First, I have a LifePro foot massage machine that vibrates at different intensities. After a while the pain will calm down enough so I can get a little rest. Then most of the time when sitting down and especially before bed, I am using a Confier foot massager that kneads, compresses and warms. It also has different intensities of each. It seems to be more preventative, or at least I try to think so.
Ultimately, my pain doc recommends an implanted stimulator that will help my back pain also. But, I don’t know. I’m at the time of a major transition with my health and my body has gone through a lot (eating healthier, exercising, working on emotional mindset). I have at least one surgery ahead of me to correct skin issuesAnd my biggest fear is that the stimulator won’t work, and then, that’s it. That would mean a loss of hope, and honestly I’m not sure I can handle that right now. It feels like I’m in a catch-22
Wow, I am so glad I found you. I have endometrial cancer also and in one node so I am diagnosed 111c also. My bleeding started in September and I went to the ER and they sent me to a general surgeon for hemerroid surgery even though I told them that I thought I was bleeding from the vagina also. They did do a pelvic and ct scan which didn't show anything. I went to the surgeon and he wasnt too concerned. He did do a digital exam but said he didn't feel anything and did I want to wait to do surgery and he more fiber. I said yes and the bleeding stopped for a couple weeks. I went back to the ER across from my community when I was bleeding puddles and this time they suggested the general surgeon but did say I might want to see a gynocologist too. They did a vaginal ultrasound but it showed within normal limits even though the endometrium was 11 cm. I contacted my primary and she did a pelvic and said the bleeding was clearly coming from the vagina. She sent me to a gynocologist who did a biopsy which was positive so she sent me to a cancer surgeon. I told her by then I was having terrible cramping part of the day which was like having a baby. She said that usually went away with a hysterectomy. I had a complete hysterectomy on Dec 26 and have been sick and confused part of the month. We think it was from all the nacotics. I had a brain scan and it was ok and didn't show signs of a stroke. My pathology report came back 111c also and I had my first chemo treatment today. I am 6 weeks out from surgery, I was just feeling better about a week ago and getting sleep and we delayed the chemo a week so I could get built up. Your story of neuropathy scares me but I am glad to know what it can do. I have rheumatoid arthritis and osteoporosis too as well as asthma. I think I can relate a bit to your pain becauce statins did that to me years ago. I tried two different ones and they were awful painful at night. I got off and never went back. My primary had wanted me to go back on it but I refused. My RA doctor had wanted me to go on Prolia but I refused. I stayed on Calcitonin which did improve my hips but not my spine. I haven't been taking Calcitonin because it is linked to cancer and I decided to go off it. I will deal with RA doctor when I see him in May. Thank you for your story and good luck with your journey. Know that your story is helping me to have more information. I just found this site tonight. I am going to try cold packs at the next chemo session to see if it helps.
Oh my. It makes me sooo upset to hear about the journey you had to take to get to the treatment you actually needed.
Have you received info regarding your type of Endo tumor? Do you have someone close that goes to your doc visits and treatments? A lot of times, I missed info the first time because it’s just so overwhelming.
How is the chemo treatment going? Be sure to communicate everything with your cancer team. Let them know if you feel anything like the burning, “pins and needles”. They can adjust the chemo dosage. I didn’t because I was afraid it would affect the treatment of the cancer, but I learned that was the wrong idea
I just found an endometrial/uterine cancer support group that seems great and that’s another thing I wished I had done…get more info beyond my particular gyn-onocologic doctor and center. It’s with Share Cancer support group that.com. There is also a support group for newly diagnosed as well.
Even though it was 6 years ago now, I can still remember and feel those days. Many of us can and lots of us around, so let us help you walk through this time . I’m sure all of us had different ways to deal with the side effect too. My weird one was having popsicles when I was feeling my worst. Don’t know why, they just did. I also would watch silly, funny movies. I also kept a little notebook close by and would write down questions I had or something I didn’t understand or just your own place to write anything-how you feel, what’s going on, something someone said, a helpful tip, or sometimes just to vent.
We are all here for you. These days, there is more information about our cancer type and support out here. If I can help, let me know!
So sorry that this happened to you and glad you are getting PT. I am in a few support groups and know that has helped a lot of people, even some who lost the ability to walk. I did PT and OT for neuropathy and cognitive therapy for the brain fog. Oncology is not supposed to dose you that hard. They are supposed to moderate how much treatment you get so that you still have some quality of life. You are right, we need to advocate for ourselves. Also I got better advice from consulting Palliative. They recommended PT, OT, cardiologist, dermatologist, endocrinologist, and neurologist, not to mention social worker, dietitian, and counseling. We learn as we go along. I wish you strength and good healing!
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