Hi ladies
I too have been suffering from leg cramp and, yes, it always seems to be worse at night for some reason. It started once I finished Taxol. Onc put it down to ‘weakness’ but not sure what he meant by that so will have to ask him again (Thought liver problems were enough to be getting on with at last meeting)
Also, like everyone else, feeling really tired on Cape and it is only day 4. Yikes! I went for a walk this morning then had to go and have a little sleep afterwards. Booked to go to York next weekend, looking forward to it but will have to build in breaks either that or hubby will have to carry me everywhere!
it has been nice to have some sunshine today
George x
Hi all
Looks like there’s quite a few of us with cramps. I feel relieved that it is probably just a harmless but painful side effect of chemo generally. I was frightening myself looking up google. Lesson to self and all SBC ladies and gents - Google is not our friend.
Barton, I really haven’t been missing out on much sleep as my cramps tend to be in the morning not long before I am due to get up anyway. Got two remedies to try now so really glad I posted on the matter.
George, Cape has loads of side effects, the majority aren’t awful but you certainly won’t get all of them anyway. The dose is very flexible so if you are getting troublesome s/e most likely in your hands or feet a dose reduction will help with those without reducing how well Cape works.
I’m very lucky to really only get pretty mild but slightly weird s/e such as a runny nose, food aversions, intolerance of spicy food, early evening sleepiness and now cramp. The skin on my feet looks like leather but after 7 months I still have no hacks or cuts. As you no doubt know, keep your hands and feet well moisturised and rest when you need to. Don’t try to be superwoman - just listen to your body. Other little tip - I find I’m much less prone to queasiness if I take my Cape pills 20 mins after food and not at same time as food.
York is a beautiful city. Have a lovely time there.
Best wishes to all Peachy Pals and anyone else who happens to be reading this. xxx
I know what you mean about Google, Waffles, but best to avoid it if you can. Certainly, my onc did not seem too concerned about leg pains and recent scan did not show any problems in this area. Yes, trying to pace myself and sure I will get in to a routine. I was up at 7.30 today which is very unusual for me on a Sunday. Thanks to this thread, I have stocked up on lots of moisturising cream, especially the Udderly Smooth. Can’t wait for the leathery feet to start. Never a dull moment on chemo.
Enjoy sunny Sunday x
Well ladies …did the tonic water help the cramps ?
Hubby and myself both get leg cramps at night . Think we ought to put the " cramp dance"to music and post it on you tube !!
Hi Carolyn,I never went to Tesco yesterday so didn’t get any tonic water either. But definitely will get it next time I’m there. Could have done with it to as had leg cramp this morning. xxx
hi Ladies. re Cramps. Yes I too got them…I had none on Cape! Mine came with Vinoralbine… And I tried the Tonic water, and it seemed to work and then it went away and ive never had them again…as usual, my absolutely lovely onc was surprised I got cramps…but as they went away on their own even after i forgot the tonic water, I tend to question wether I got used to the chemo or even if it was due to my sleeping position…As you may know from my posts I have various symptoms that come and go…and sciatica is definitely related to stress and my positioning in bed( need a pillow between the knees) or sonetimes sitting on a hard pew in church or a hard chair, so I now routinely sit on a kneeler in church and take cushions around if I know im going to be sitting on a hard chair.
i did have diarhoea and sickness with cape and used to religiously take the antisickness tabs during the first few cycles, ( which I now think contributed to my dvt, coupled with being less mobile, due to being really apathetic, fed up etc.) i wrote on my journal for the onc that life was not worth living, at that time…had messed myself a little whilst in the library, was throwing up etc. and he kindly reduced the dose and made it 1week on 1 week off which I coped better with and it still worked, for almost Two years. My toenails got ruined at that time and have not recovered. I got splits in the fingers and wore thin latex gloves when needed to prevent bacteria giving me cellulitis, which im prone to. I also got friendly with udderly smooth at that time.
Nicky, thanks for the tip re the new drugs…I did ask, but my cons at the warfarin clinic said they are not for me, as there is no antidote as yet for bleeding on them.as you know, they wont give us Warfarin either being cancer patients. Yes i get fed up with the lumps in my tummy, but practice mld on my tummy which seems to clear them a little faster.
Love to you all, hope the cramps get better for those of you suffering.
Moijanxxx
Hi cape ladies, mum has been suffering terribly with painfull legs at night , I stayed with her last night and she did get to sleep untill about 4ish this morning, thank s for the tip about the tonic water, I went straight out this morning and got her some which she has been drinking so I will let you know how she gets on with it x
Hi ladies
I have been reading a booklet my BCN gave to me and a something called. Radio Frequency Ablation was mentioned(RFA) it sounded like a new treatment that wasn’t used much (I know, a little knowledge…) has anyone heard of this or had the treatment? Not even sure it is suitable for secondaries.
It has been lovely to have some sunshine this weekend.
Cashmore, hope the tonic works for your mum and she gets some sleep tonight.
George x
hi George,
yes I asked about RFA, but as I have a lot of tiny seeds/ mets through my liver then it wasnt suitable, works better with a few defined tumours,
good luck thoxxx
Moijan
Hi ladies, the tonic water didn’t help mum last night, but I think she only had one glass of it, should she be drinking it throughout the day or just before she goes to bed. Also I’ve just read on the internet that a bar of soap under your bottom sheet is supposed to help leg cramps, aparantly it does not matter what soap as long as its a fresh bar but lavendar soap was recommended, will get her to give that a go tonight x
Sorry tonic water didn’t help your mum …it was worth a try …no don’t drink too much tonic …one glass a day as its got q uinnine in it .
Maybe try a banana as that also can help cramps ?
Otherwise I can’t help sorry.
Hi, I need to correct my earlier post, the tonic water did help mums leg pain, my brother stayed with her last night and because she got up a few times in the night to use the toilet, he assumed it was her legs playing up, but when I saw her at dinner time she said it had worked, so thanks for the tip x
Hi,
I had an ultra scan on my liver yesterday and get the results a week on Friday. CT in July had picked up 3 lesions. Does anyone know what ultra scan will show that CT scan didn’t? Getting worried about results as know it is too soon for Cape to have done anything as only been on it for a week.
Glad to hear tonic worked for you mum, Cashmore
George x
Hi Nicky, thanks for this. Just getting anxious that scan might show lesions have grown since CT scan- you know what scan anxiety is like! Pleased to hear Cape worked for you. I am keeping my fingers crossed as, apart from feeling more tired than usual, side effects not been too bad. However, only on day 8, cycle 1 so don’t want to tempt fate.?
Hello Capecrusaders
Wow what a busy thread this has become welcome to all newbies.
Barton congratulations on becoming a community champion it is well deserved you have helped me on numerous occasions.
Well my holiday was very enjoyable with the grandchildren and of cause my son and his wife. We did lots of things and we bought them 2 goats to go with their 3 hens 2 sheep and Tsarine the lovely Bernese Mountain dog. The weather was hot but we manged to stay cool.
I had a terrible pain in my back and it wasn’t helped by constipation as my walking was bad i thoughtt I would have trouble. It is suprising how you can feel rough but insist that “I’m fine”. I managed the 420 miles road trip ok though maybe because I was sat down for a long time.
We went on walks along the cycle tracks which are lovely my hubby took my scooter which I shared with little William on my knees. The area is a valley between mountains in what I would call sound of music country.
Waffles you are doing very well my break from cape has restored my hands and finger prints for how long I don’t know. I start my cycle 12 today so back to setting the alarm clock for breakfast and tablets. I started cape back in early November and the onc said because I have been on chemo drugs for nearly 3 years my body is suffering and if this stops working I would need a break before starting another chemo. So lets hope I will be ok for the next few cycles. I have my scan on the 25th so we will see if it is still successful as my first scan.
Ellie I am sorry cape was not for you I do hope Eriublin will be successful for you. But I am glad you are still keeping in touch on this thread.
Goodluck to all our peachy friends
Love and ((((hugs)))) xxx
Hi Marirose,
Sounds like you had a lovely time with your family in France. It sounds like they have a little menagerie especially with the new goats you bought them.
Is your back OK now? It sounds like you were doing lots on holiday so I imagine that would cause most of the pain. I expect constipation didn’t help though.It certainly causes back pain for me.
I seem to be doing fine. I have some aches and pains but they are very minor. I think the Gabapentin is keeping the majority of my nerve pain at bay. I only have a few minor s/e from Cape but I can put up with those indefinitely as long as it works.
Good luck with your scan. I hope you can stay on Cape for a while yet. (((hugs))) xxx
Hi ladies, it seems I will be leaving this thread as mum has decided to stop having chemo. We went to see the onc yesterday, she agreed mum was feeling too I’ll to carry on with the treatment, she’s been really poorly the last few days. The onc had upped her steroid dose to see if that will help with her eating and said she would reveiw her in two weeks because she would know then if its the chemo or the cancer that is making her feel I’ll, but mum was adament she wants to give up on the treatment. Obviously its mums choice but its very worrying as she has an aggressive cancer that has already spread to her liver and lungs and with no treatment the outlook isn’t good. She is going to spend the day at our local hospice on Monday to see if she likes it, if she does they want her to go every week, she asked the onc how long she had left, but they couldn’t say, which I was glad about because I don’t want to know that, she’s 79 now and wants what time she’s got left to not be filled with taking chemo and feeling unwell. Thank you all for all your advice and tips, and I wish you all well xx
Oh, sorry Cashmore…its so hard to watch someone you love going through this disease. Its good your mum is making her own choices though…that can make you feel more powerful, more in control of the situ.
wait and see, is all I can really say…it is up to her…you never know, once she feels better, she may decide to make a different choice. But either way, its good that she is making the right choice for her at this time…
will be thinking of you both
hugs
Moijanxx
Hello cash more
Sorry your mum has decided to stop the treatment but to be honest …my opinion only …it’s the decision I too would make I think.
Sometimes it’s quality of life and without all the drugs / side effects maybe just may be she will enjoy some happy days.
You are a very thoughtful and loving kind daughter and she will appreciate a cuddle, funny text from you or even a silly teddy bear or something .
Hugs xx
Cashmore, your mum sounds like a strong, courageous woman and she clearly has a loving daughter who will provide lots of support. Hospices are amazing places. I visit mine regularly for various treatments and have received nothing but kindness and compassion from the people who work there. I hope your mum’s pain eases and that you get to spend lots of pain free, quality time together.
George X