Hi everyone, I’m a newbie to the group but am struggling with pain and walking and wondered if it’s just another delight of endometrial cancer treatment!
I was diagnosed with endometrial cancer in November 2023 and had a radical hysterectomy in January 2024. After 6 weeks surgery recovery I began radiotherapy daily for 6 weeks, with 2 chemo rounds of cisplatin during that time. I had an allergic reaction to the cisplatin and phase 2 of my chemo treatment is being done very slowly as a result, so 2 x 6 hour days back to back to deliver carboplatin and paclitaxol on different days. Before my last chemo round last week I was told that my white blood cell count was low and I would have to inject drugs after chemo to encourage my bone marrow to produce more for a few days. I was already struggling with joint and muscle pain from the chemo, but the injections made that much worse and I’m finding sleeping very hard as I can’t get comfortable. My walking has also been affected as it feels like my hips and knees won’t support me and is painful too.
I was just wondering if this was anyone else’s experience and any suggestions to cope with the exhaustion of chemo exacerbated by not sleeping. It’s so reassuring to read through the community responses and questions, so thank you in advance to anyone who responds.
Hi Gilli
Welcome to the Online Community and the Womb group.
I am sorry to hear of your endometrial cancer.
I also had chemotherapy (carboplatin and paclitaxel) and then external beam radiotherapy afterwards.
I was neutropenic a few times but they did come up in time for chemo each time and I did not have the injections. I was just told that if they were lower than they should be, that chemo would be postponed.
Have you spoken to your CNS about how you are feeling? You should also have been given a 24 hour cancer line phone number to call. Chemo is exhausting and I found it more so when my bloods were off and not eating properly didn't help. I found it got worse with each cycle and by the end would be resting most of the day. Radiotherapy also causes fatigue so because you had that first- it could also be lingering.
I got pain, mainly lower back with the paclitaxel and also around hips. There was general achiness and yes walking was affected. it was like I didn't have the strength. I was told that because the paclitaxel attacks where the bone marrow is made in the hip/lower back area- that is partly why there is pain. But that it is a known side effect. I was prescribed strong pain relief- that although it did knock me out a bit, did help.
I found that I didn't sleep much at night, but then did doze on and off during the day. I believe that the steroids didn't help. My consultant put me on a tapering dose from the second cycle and that helped.
I would suggest giving your hospital number a call and talking things through. Mine were often able to give reassurance and that helps, because if you know that it is to be expected and will pass, that helps. And if you do need some medication they will be able to sort for you. It may be that they need you to come in and have a check over.
Hope this helps a bit and I hope that you are able to get the side effects under control. To have pain and not be able to sleep is rubbish.
Jane
I am sorry to hear your husband is also having trouble with them. I found that steroids really affected me too. In the end I was given a tapering dose- where they reduce them slowly until you stop- and this helped with the side effects.
That's not good. Have you got a supportive CNS that you can talk things through with. It's not great that you feel you are walking on eggshells around him, whilst dealing with your own cancer.
Why not give the Support Line a call and talk things through. I wonder if there is any support where you live for you both. Some people find Maggies are good. The Support line would be able to check if there is anything close to you.
