Racer, you are doing amazingly well, considering all the awful stresses you are suffering. I hope the drainage of fluid happens soon for you, which will at least take one worry off your mind. I'm sure your Onc will come up with something - especially after what was said the other day about looking into another chemo for you.
Hugs, and thinking of you and wishing you the best. Barton.x
So sorry to hear your news racer, sending hugs and prayers to you. I hope you are well enough to enjoy the precious time you have with your family.
Love and prayers
Hello racer, I am so sorry to read your news. You have been fighting to keep going, and have succeeded - maybe you can succeed again. They always say that the mind is a powerful tool, so it would not surprise me to learn in the next few weeks that you have managed to do all you wish (and last longer, too!). You are one determined, brave lady.
You have all my good wishes. Hugs. Barton.x
so sorry to hear your news. You are such a strong lady who seems to have an amazing family and support network. I hope hospital continues to stabilise things for you so you can go home soon. You are in my thoughts. Sending you lots of cyber hugs
love George x
Oh racer, so sorry to hear your news. In my thoughts
Racer, so sorry to hear your news although it seems inadequate. You are obviously devastated.
Hope they can help keep you comfortable and enable you to see your daughters prom. You seem to have a wonderful support group .
You seem to be an amazing lady , who has dealt with everything with with strength and humour.
Will be thinking of your with love. Marli xxx
Hi Sandra, you could be right about the combination.....I had both but seperately not at the same time. I never had the d on Vinorelbine ever. But i did on Cape
I have given myself the big D when ive eaten a lot of chocs, also a few weeks ago when I had too much fresh apple juice.
Thanks Barton, I now have a MacMillan Nurse and I will had a word with her about getting a card and any tips, she has provided me with lots of other things.
Moijan, I like chocolate but only have a occasional square as I am overweight so that wasn't the reason. I think it was because I had started vinorelbine on day 1and 8 of the cape cycle and that was day 8, although the big 'D' wasn't one of the side effects of vinorelbine I think that combined with cape it was.
Hugs Sandra x
Sandra - I have just ordered a toilet card from MacMillan online. I Googled MacMillan toilet card and several links came up. I had to jump through hoops and sign up to the website to get one, though. If you are already a member of their wdbsite, though, you shouldn't have any problem.
Oh you poor thing, Sandra! I know it won't help at bedtime, but someone on the Bones thread (I think) mentioned that McMillans does a "toilet card", which I think you can present in any place that doesn't actually have public loos (if I have understood correctly). I am trying to source one now, but my hospital doesn't seem to have a dedicated McMillan office or base (I could very well be wrong). If you are afraid to go out, it might be an idea to try to get hold of one of these.
Sandra, I totally agree...thats awful
a couple of things that did promote the big D for me were....too much applejuice( once drank a pint in one go) and chocolate...which does make the bowel move....so if you think you eat a lot of chocolate...experiment and see if cutting down helps xx
oh and paracetamol, slows the bowel down, sometimes Ive taken two for pain and found that-its well known
good luck with the D anyway xx
Yes, I had taken 2 Loperomide before going to bed as I had already had one lot of D, but it didn't work!! It makes you worry about doing anything or going anywhere in case you get caught short.
Hugs Sandra x
Hello Sandra, so sorry to hear about your emergency! Do you have any Loperamide? If so, I can recommend taking them just to be on the safe side. I know what you mean, though - I was sitting up reading in bed one morning, and sneezed! Not a good move! Had to chuck the pillow (luckily I was sitting up on the pillow!) and do an emergency wash of nightclothes! Not at 2am though!
I had a big 'D' moment the other night and ended up having to change all the bedding at 2am, my poor husband didn't think much to being woken up that way. Luckily we have twin mattresses on one base so I only had to change my side. The mattress has now got a cover on it to protect it and I will have to invest in some incontinence pants!!!
Yes Moijan, I used them when I was going anywhere special and have checked that I can do the same this time.
Wow, you did well to do Uni. with chemo. I really admire you. x
Yes Marli, I suppose...if you are allowed to take diarrhoea meds...you could always take one prophyllactically, in case of a mishap....the 'melts' work quickly so you could take one earlier...but do check with the onc, if you sont already know...or with a pharmacist...
I will never forget the runs in the library.....hope noone noticed...i was at uni two days a week too, and that was a bit hary...took, thermom, melts, panadol, antisickness tabs, all in my handbag with wipes to cleamn myself if needed....a small pharmacy....yes.
good luck and hugsxx
I know what you mean. I spend my life in my skechers but they don't really go with a frock. Though I believe they have started doing sandals. Not sure if they would be as comfy as the go walk 2s and 3s wich are amazing.
Yes Marli, I agree with Barton...I too had an awful first twocycles which really calmed down when onc reduced the dosr....its very common to be shoved on the highest dose for your weight and then need a reduction!
i had diarrhoea in the library..very embarrassin, vomied like a pregnant lady and got an early reduction...also got a svt from lying listlessly on my bed...both Cape and prochlorperazine list cltos as something to watch out for... So you need to keep active...and need comfortable footwear.
drink loads of water too.
love and hugs,
Marli, good to know you are seeing your Onc soon. I am pretty sure your hand and foot symptoms are due to your raised dosage, but obviously I am not a doctor. If you are really distressed, I think you ought to contact your Oncs secretary asap.
I would suggest being careful with wearing flipflops - you don't want to end up with sores between your toes where the strap goes. A lot of ladies on the Forum recommend crocs as comfortable to wear. I don't have any myself, so can't personally recommend them.
Sorry I can't be of any further help.
Thank you all for your advice. I am seeing my onc on Wednesday and intend speaking to her then. I have only taken 6 anti-sickness tablets over the two rounds (6 weeks). and have the metaclopadin (spelling) because the others make me very constipated and she advised these would be better.
The "gaseous emissions" - WOW. I am quite an expert at that and unfortunately it does not smell pleasant. Remember that from first lot of chemo in 2009, caused much amusement of my BCC forum - there was a whole thread about it. the things we have to put up with.
Was wondering if it was normal for the feet and hands to go so fast (hands starting now). Going out for dinner on Saturday for hubby's birthday and am not sure what shoes to wear because I am living in slippers. Think it is going to be my old FitFlops - very elegant, not,
Thank you ladies I feel much better than yesterday , it is amazing what a little support does. Marli x
Hello marli, so sorry to read you are having such a hard time. That dose seems very high to me - I suggest you follow Kirky's advice and speak to your Onc. You are obviously finding the additional dose a lot harder (and I'm not surprised!)
As to the extra "gaseous emissions", yes, I suffered from that for a while after starting, I think. It has definitely settled down for quite some time now. Still get the big D, but have never had nausea on Cape. You need to speak to your Onc about that, too, although if he/she reduces your dose that may solve that problem - horrible, I know. Can you ring your Oncs secretary or something, and ask about reducing your dose now - hopefully your Onc would get back to you today.
Good luck, and hugs. Barton.x
Hi Marli and sorry to hear you're suffering so much on Cape. It sounds like it was quite a hike in dosage this time around and coupled with the fact you've lost a stone no wonder you're feeling so rough. Definitely contact your onc, or his/her secretary who should be able to get a message to them. I felt awful on my first round of Cape (back in 2013) and got an immediate 20% reduction in the dose. I too lost a lot of weight so I think I was still probably on a full, 100% dose anyway as it's based on weight and height. I also found I didn't need anti sickness tablets, for me the nausea was all in my mind from struggling with it on FEC. However I do know it's worth checking out various anti sickness meds for those that do suffer with it - metaclopromide absolutely spaces me out whereas I tolerate domperidone very well. Hope you can get this sorted ASAP as there's nothing like the SEs getting you down and our oncs want to get the balance right between effectiveness of the drugs and the toleration of the SEs.
Sorry you are struggling with cape, speaks to your Onc about the side effects, I am on 500mg of Cape, twice a day, and have had no real problems. I am now on my 6th cycle and have just been put on Vinorelbine as well which has had a few more side effect including the big D. I did find on the first few cycles of Cape that I had chronic wind, all noise but little smell, but still quite embarrassing! That seems to have calmed down now. I do use lots of cream on my hands and feet but apart from them being a bit red and my index finger being sore and itchy I have had no real problems. I stopped taking my anti sickness tablets most days with Cape as I found they made me even more tired and I only ever felt slightly sick.
I hope things improve for you as your body adjusts, but do talk to your Inc who may be able to hangs or reduce your medication.
Ooh you have been unlucky, pretty much the full house of the most common s/e. My highest dose was 5000mg per day and I felt dreadful too. My ONC knocked my dose straight back down no questions asked so I really recommend you get appt asap and tell ONC what's been happening.
For your feet, have you tried bamboo socks after you've put cream on to keep the moisture in? i found they stayed softer for longer.
Have you tried a few different tablets for the sickness? I ended up with metoclopramide after a bit of trial and error.
The big D, luckily I take oramorph for backache which has the opposite effect so few and far between.
The only thing I can say for both is to eat little and often so tummy is neither empty nor full.
Hope you get it sorted quickly.
Have just finished taking pills for 2nd week of first round and have found it quite hard. Feet started to go downhill after 2 days and I am finding walking quite hard. Followed advice from ladies on here regarding creaming etc and putting feet up.
Also developed diarrhoea and was sick a couple of times. Took anti-sickness a few times but think they make me feel unwell. Digestion like a tumble dryer and making loads of gas.
Is this typical? Onc did raise dose to 4300mg per day from 3300 so feel that it is a bit high. Have lost a stone since last weighed in clinic 2 months ago and wonder if this contributes.
First time in 8 years of treatment that I have felt like crying. Need a little reassurance.
Hope you are feeling better racer and Barton.
Thanks, George, for your reassuring post!
Happy birthday, racer. Hope you have a great day.
Hello Moijan, thanks for your message. Yes, trying not to jump the gun. But have noticed my body is reacting less each time to the Cape - which is good in one way, but I'm thinking also means the little C b****rs are also adapting. Keeping fingers crossed though.
Good luck with your treatment, and I hope your thumb improves soon.
Racer, yes, Barton is very wise....naturally hubby is worried tho, as you must be too....have you both each got counselling support, should you wish? I have it from time to time....its a bumpy road....
Barton, funnily enough, my thumb is a bit sore and red this time...had my lymphoedema sleeve on during chemo, which may have kept the eribulin in the thumb area instead of letting it flush out.
i do hope your meds get sorted....you have had a good run on Cape, hopefully you can stay on it?
am awaiting my scans next month to see what the jury think re Eribulin xx
Racer, you are a real star...i have been reading "the Cancer Whisperer" she is a star too....and she has been where we are....might be worth a read....she too stuck out for the treatment she wanted and really pushed her oncol....this is a tough journey we are all on....but I agree with the others...you are taking the lead on your treatment and are in charge Racer....good for you...you are an inspiration. Xx
thinking of you, lots of love,
Glad you got your daughter sorted out, racer. I should tell hubby to stop Googling - I found out something that I wished I hadn't after I did it a while ago.
My feet are fine, thanks - haven't had any trouble with them for a good few months now, thank goodness. It's my thumbs I am getting problems with at the moment, although during break they improve a lot. I'm currently on another break from Cape (since last Thursday), while I consider my options re treatment for some of my mets. Probably won't be back on Cape afterwards, but not sure yet. I would rather not go into details at the moment.
Hugs and good wishes. Barton.x
Hello racer, yes as Deni (George???) says, hope you manage to both enjoy your birthdays. I am glad they have managed to get you your scan in advance of your holiday - at least it's out of the way then and you can concentrate on enjoying yourselves.
So glad you are sick less often - it's miserable leaning over the loo, isn't it?
Sorry to read you were so tired last Monday. Good luck with the Cape. Keep taking the pills!
you sound like such a lovely person and so strong. Sorry to hear you are having problems with fluid retention, it sounds very uncomfortable. I hope you and your husband have lovely birthdays and manage to get away for a well deserved mini break. Good luck with oncologist on Thursday
Hello marli, no, I don't have one of those - never heard of one before! That sounds like it could be extremely useful! Definitely going to ask for one of those. I do have one of the special keys (Carolyn told me about those), which I got after I got PIP and my Blue Badge. Luckily I haven't had to use it yet. It's huge, though, and weighs a ton!
Yes, keep off your feet as much as possible - an excellent excuse to get your partner (if you have one) to do all the work!
Hugs to all. Barton.x
Barton - do you have a McMillan toilet card. It tells people you are receiving treatment for cancer and may need the loo urgently. Used mine for the first time on Saturday at Boot's opticians. You get them from the McMillan offices in hospital. My friend got mine for me.
Thanks for the advice about keeping off my feet. Marli x
Hello marli, sorry to read about your feet! Nasty, I know! The best thing to do (apart from creaming) is keep off them as much as possible. I know that's not easy. Also sorry to read about you getting caught short with the big D! Also nasty! I nearly had the same problem on Saturday - luckily we were close to the cafe where we had had lunch, so went back in there! They were very kind and let me use their loo again.
Hope things ease off for you soon.