Marilf, hope your anaemia is easing up and you’re getting some strength back. If you let me know what time you’re at clinic next week, I’ll get there an hour earlier and we can have a cuppa. Mind you, I’ll have to confirm on the day as, if history repeats itself, I’ll either be on the loo or in bed with fatigue.
I was at clinic yesterday. Blood count is still low but within normal range. Liver and kidneys doing well so they gave me more tabs. At 2500 x 2 daily I was really hoping they might reduce it but no, I’m stuck on this dosage for awhile.
I could really do with some help on diet here. I’m not eating much, can’t face meat of any sort, but eating a lot of fish. Friend suggested I cut out dairy for awhile as I’ve had the big D most days. The only time I took the anti-D tablets I was up half the night with stomach cramps, the only time I’ve had them. I could do with food to boost the red and white blood cells. Hands and feet are doing well and I’m lucky in that I’ve had no other side effects.
Hi
Just wanted to pass on some positive news
Have completed cycle 2 on reduced dose of 2000mg x 2. SEs almost non existent now after horror of first cycle. Just a little weary towards end but a couple of early nights helped. Plus a few twinges of pain, possibly from zometa, but I haven’t taken diclofenac/Tramadol for 5 weeks now. I was on max daily dose of both.
I’m self employed & stopped work because of first cycle but company I was working for have taken me back on PT hours. Really helps to feel ‘normal’
Onc agreed to delay cycle 3 so I can go on holiday.
InsureCancer appealed my holiday insurance case & have got me cover for NY & Canada. Premium & excess high but we thought it was worth it. So in a weeks time I’ll be flying over the UK on route to America.
It’s only 7 months since my bone mets dx & for now life feels relatively normal.
Hope this helps other new ladies that life can continue relatively unhindered.
Ingrid
Looks like I’m coming off Fulvestrant (endocrine therapy), as my receptor status has changed (apparently I’m now weakly ER +, but strongly Her2 +). Anyway I’m starting Herceptin with Capacetibine/Xeloda on the 19th September (apparetly Herceptin works better if its started with chemo). Don’t know how long I will be on Cap, but not looking forward to SE’s.
Few questions: (1) Have noticed people referring to Croc shoes, and wonder if someone can tell me what the advantage of Croc shoes are, over normal shoes? (2) As I don’t want to wear socks with sandals, could I put moisturiser under knee high tights - or would that not work? (3) what do you do about mouth and lip ulcers? Any other tips appreciated.
Thank you,
LG
Val - are you getting some benefit from the blood transfusion now?
Marif - hope the chemo break is working for you.
Pam - so pleased you had good news on your MRI.
Jan - must have been such a relief your ECG was OK. Know what you mean about worrying about whether it’s working. As I have skin mets I can see there hasn’t been any significant growth since starting Cap but don’t see any sign of improvement yet either. Tamoxifen didn’t work for me so don’t have too much confidence in hormonals too.
Steris - Hope you’re recovering from the op. How long before you have to restart chemo?
Sadie - Hope you’re better now. No one want to join us here but it’s stressful enough waiting to start a new chemo when it’s just down to waiting lists without having to contend with infections too.
GrannyScouse - That’s some dose you are on. 2000 mg x 2 daily is plenty for me. I think I’m on the max dose though as I’m quite small.
Ingrid - Not sure if I’ll catch you before you leave but have a great holiday. That’s fantastic news about the insurance.
Lemongrove - I haven’t really done anything different for my feet as aleady moisturise them after being on TAX but I’m still on cycle 2. I’m using up some Boots stuff (Deep Moisturising Cream with mint, lavender and marshmallow) but picked up a cream with urea following tips on this thread as a back up in case I need it later as I think the hands/feet problems are cumulative Haven’t had many days to wear sandals with the rubbish weather but had them on today and walked into town without any problems (and no socks or tights). Not sure if all units do this but when I was in for cycle 2 refill the chemo nurse inspected my feet and didn’t take my word for it that they were OK, so you might want to watch what you wear for chemo days.
Was given Metoclopramide this time for nausea/acid reflux issues but doesn’t seem to work much either.
Hi there, I have just taken my first days dose of Xeloda. I’m on 1500mg x 2 daily, and have been worried about the side effects of this drug. As I’m currently on a trial in Mexico and on a tox free injection, this is supposed to help with the side effects, but am preparing myself just incase. I have bought lubriderm advanced therapy cream for my hands and feet, and switched to aveeno body wash. I am also using B17 cream on my skin mets as meant to help, can’t take orally though. Hope this helps, keep you updated. Xxxxx
Hi
Gail - I didn’t find metoclopramine any good so was switched to cyclizine which works fine. Take 30mins before each meal.
Lemongrove - once on right dose, the only SEs I’ve had is feeling weary at end of 2nd week & nausea which is well controlled with cyclizine. Hands & feet have been fine just moisturise in morning.
Ingrid
Ingrid - thanks I’ll mention this to my unit next time.
Juls1974 - I came across you on another thread. Welcome to the Cap club. As I also have skin mets I’m interested in this B17 cream. Not too keen to mention it to onc as she’ll probably scoff at it. Let us know how you get on with it.
Well the op to have my ovaries removed went well; bit of a hard time and the stitches are all healing nicely. Thanks so much for asking Gail.
I’ve been off Cap now for over four weeks and my hands/feet are just recovering. Feet still peeling even after use the Flexitol moisturisering cream/balm, seems no end to it. I have my start date for cycle 10 on the 24th and even through I’ve enjoyed my break I’m a little anxious to get back on the peachy pills. Just won’t like the se of fatigue and feet/hands
LG - I always use a mouth wash given to me by the chemo nurse its the same as corsodyl. I use it up to four times a day if my mouth feels a little sore and it has kept the dreaded ulcers at bay. I did have very sore lips one cycle and use lots of vaseline which helped over a period of a week or so. To be honest I’ve suffered different se each cycle so there is no hard and fast rules to this chemo, but we’re all different and it affects us all in different ways.
I’m also going to ask for another reduction because of the neuropathic pain in my hands. I already had a reduction for my feet/hands of 25% but I finding it difficuly to cope with the rubber hand syndrome so I’ll see what my oncologist says when I see her tomorrow. I don’t have my scan until the 29th August to see if its still working but no reccumulation of fluid so looking good.
I hope you all are coping with the se of this chemo and the best bits are thats its working. I’ll let you know how I get on tomorrow,
Just want to say re anti sickness tablets I take 2 domperidone before each tablets and this has worked for me. I’ve tried to reduce them but the nausea is terible and the chemo nurse advise if this is working then just carrying on.
Gail - I’m allergic to Metaclopramide it makes me psychotic. Horrendous!
Chris - good to hear you’re recovering well from the op. I know how you feel about the chemo break, I’m always in mega-panic mode while waiting to start a new treatment. I had domperidone for the 1st cycle and didn’t think it made any difference, but hopefully I’ll get better results from whatever they give me when I pick up the next batch tomorrow.
well seen oncologist today she was pleased about the way the op went and the scars are healing nicely. She just advised me to make sure they were dry and not oozing befiore I started chemo. She did say that there may be some progression because I’ve been off Cap for 6 weeks, but didn’t seem worried. Funny progression use to frighten the life out of me but on the next scan which is the 27th but she was so calm and told me it wasn’t a concern.
I start the chemo in a couple of weeks which will be on the 24th. I discussed having the dose slightly reduced and she has agreed to my request. So I’m going to be on 1500 twice a day and hopefully will ease the problems with my foot/hand & neuropathy problem well for a while at least, so fingers crossed for that.
All I can do is enjoy the rest of my chemo break before I’m back on the peachy pills.
Hope everyones coping with their se and I really do hope they are mininal.
I am also having a scan on the 29<sup>th</sup> to see how things are going. I have had my doubts of late as to whether its working for me still, I’ve noticed a very small lump appear and I feel my main lump is bigger (maybe I am just being paranoid). Have been on it for 15 months now and was told at the beginning it may stop working at some point. I voiced my concerns at my hospital appointment on Tuesday and was told to wait and see what scan shows which I suppose makes sense, but I don’t have 100% confidence in CT scans due to previous experiences.
Hope I am wrong but in the past when I have had concerns about recurrences I have always been right unfortunately.
Jan
Chris - Hope you’re getting some benefit from the chemo break and recovering.
Janice - Hope you are wrong too. It’s so hard not to worry when your scan must seem a long way off to you just now. What was the previous experience with scans?
I had my first out of hours experience in the hospital yesterday. Have had a sore/stiff neck since Friday that was getting worse to the point where I was struggling to eat and drink as it was so painful to swallow. Thought it was just a muscle strain or a trapped nerve but phoned the hospital in the morning as was unable to eat enough to take the Cap pills. They did some blood tests and no sign of any infection but have sent me home with some co-codamol and anti-inflammatory tablets and feeling much better now.
Hi Janice I think I am like you as you mentioned main lump, did they mention about removing this at all ? It’s fats when you know you have the mother lump in thebreast as well. Thanks for any advice.
Mines a long story, going back to 1986 when I had my first diagnoses. Was Ok till 2005 since then I have had 4 recurrences, never had any other chemos. About having the lump removed, I had conflicting advise on that, my surgeon said I needed double mastectomy, already had one with LD recon, all lymph nodes removed and a skin graph, plus chemo, it was up to me which to have first. As I have never had chemo before I decided to go down that road, surgery has’nt helped that much.
When I saw my oncologist the following week she said she was against me having surgery and had strongly voiced this at a meeting with my surgeon. She felt that as I have had so many recurrences it would only come back elsewhere.
When I was told about having chemo I assumed it would be the traditional type, I had never heard of an oral one I was also given the impression it would be 6 cycles, I soon realised that would’nt be the case, now on number 16.
As far as I am aware it is still confined to the breast area, both sides, I have broched the subject of surgery on several occassions with oncologist but she is strongly against it saying why put myself through all that and find it still returns, but how can they be so sure I am not convinced.
Having scan in the couple of weeks so see what that reveals.
Janice, if you have any doubts, why not get a second opinion from the Prof who treats me at Charing Cross Hospital ? He say’s there is overwhelming evidence that removal of the primary is beneficial - and I think he knows what he is talking about. Apparently he’s one of the top twelve Oncologists in the UK (he’s a leading research scientist at Cancer Research, a senior lecturer in Oncology at Imperial College, a senior Harley Street Consultant, and cancer correspondent for the Daily Express).
Just a suggestion - hope you don’t mind.
Hi lemon grove , what is the name of the consultant at charing cross ? I spoke with onc quite a few times about this and I have documentation which supports what you say, the primary tumour is better to be removed. My onc said it is a reoccurrence not a primary , as myself. I agree with you totally Whether primary or reoccurrence shoul be removed.
