Hi ladies
Foxy here posting on behalf of Mum - 87 with lung mets. She’s on her week off following her first cycle and is seeing her oncology nurse on Thursday to get the next cycle. Her main problem is not the big D, but the complete opposite. She’s drinking lots of fluid, eating plenty of fruit, and taking Fybogel but she’s in real discomfort and doesn’t want to eat much. Dulcolax seems to work but she’s frightened to take it if she has to go out anywhere in case she can’t get to a loo in time. She also has pain in her back but otherwise so far so good. She’ll mention it to her nurse on Thursday, but since this doesn’t seem to be listed as a common side effect I was wondering if anyone else had experienced this and what you did.
Hi Foxy - I spent years being a bit constipated on Xeloda, sometimes interspersed with the big D, but we all have an individual reaction to our cancer and treatments. Good that your Mum will speak to her nurse this week, and hope she gets some good suggestions. xx
It seems we have the same onc. And we were both at the same clinic at the same time! I was seen in the same room as you were about an hour later than you!!
Only just found out how to post on this new setup. I simply have to login!!!
Will post again about how my treatment is going. Now on cycle 3 and no real side effects, except that my blood count is low but not low enough to curtail treatment.
Looking for some advice on how to take the tablets with or after food. On Day 6 of first cycle and only real issue so far was almost being sick about an hour after morning dose on Day 4 and 5. First time put it down to experimenting with not taking the Domperidone for a couple of days and it settled as soon as I took one with some water. Think it must have been more to do with the water as too soon for meds to work. Second time had taken the Domperidone and it settled with a glass of water and an extra tablet so not sure if it’s due to how I’m taking the chemo. I’ve been taking them a few minutes after I finish breakfast but wondering if it’s better to have something to eat after the dose as well. This morning I had an extra glass of water about 1/2 hour after the chemo and it seems to have worked OK.
Have a bit of peripheral neuropathy too, but as I still had this from Tax not sure if it’s getting worse or I’m just imagining it.
Gail, the advice is to take within 30 minutes of food as this slows the breakdown of the tablets. I generally have some tea and toast around 7.30 and take just before 8. So far I haven’t felt sick which is amazing as if anyone is going to get sick, it’s usually me!
My biggest problem is bloating and wind as the days goes on. I start the day off with a waist and look pregnant come 8pm! Fortunately I have 2 dogs to blame the wind on if we have visitors!
Hey Granny S. - I always look around for you when I’m at Christie’s - next there to see our onc on the 31st of July, so if you are too, let me know (post here?) and we can have a cup of tea together. I’ve been blessed with quick-in-and-out appointments recently, as I’m having a chemo-break, and so don’t have to wait for hours for the pharmacy to dispense the Xeloda. Not sure if I’ll be re-starting Xeloda at any point soon - my kidneys are becoming less & less functional, resulting in galloping anaemia, so onc has taken me off chemo & bisphosphonate (worried their long-term use might be part of the problem), and referred me to renal consultant at my local hospital. Feeling pretty much OK, though.
Just been in touch with Sue about arranging a Manchester Cupcake Girls get-together - maybe see you there? xx
Hi everyone, I lost this thread like many others on the new site but glad I have located it again. Why do we have to have so many sub sections for secondary breast cancer. Am I missing something? I think it would be easier just to have the main heading so that I could locate all the threads that cover secondaries. Anyway good to find you all again.
I had 6 cycles of Capecitabine and saw my Oncologist on Monday and we have decided to carry on with another 6 cycles at this reduced dose I started on. 2 big 1 small in morning and 2 of each at night. I find the having to eat something more of a struggle towards the end of the 2nd week. I too have odd bouts of Big D but now I am also experiencing the opposite and can get quite constipated. My finger tips are always affected and they seem to be worse on the tablets…a numbness that I have almost got used to. So sensitive that sometimes I cannot use the touch pad as my fingerprints/fingerpads are not always responsive. I was back in the ward on Tuesday and had my Zolidrinate infusion and picked up the round 7 chemo pills. I had my bloods done on the Friday before I saw the Consutant on Monday and my HB was 9.5. There was some discussion on the ward about this blood test being too far back for me to have my treatment so they took another blood test but did eventually agree that I could have my infusion and chemo pills. But on Wednesday they phoned me to say my HB was now 8.5 and that I needed another blood transfusion. I called them on Thursday as the nurse had said they woud try to arrange it for this week. But no it cannot be done until next week as ward is so busy. I stil do not know what day they can fir me in (it takes 4 hours and I realise that they need the staff to watch me while having the transfusion. But now I am feeling the effects of a low Hb and am toiling a bit…everything a bit of an effort. I realise some of you have may already read all this ( that is the problem of having threads in different sections). So awaing a day and time when they can see me. I have to continue with the chemo though.
Another problem…I over did it last week when I was out with my daughter and husband. I walked too far and I had a sore leg the following day. I mentioned it to my Consultant but told her my walking had improved a great deal before I overdid it that weekend. But it is not getting any better and it still hurts when I walk (ok when I rest). She said I may need an xray. As it is still a problem I may need to contact her to arrange an xray if it doesn’t get better over this wekend. I feel like it is 2 steps forward and one back at times. Yet my mood is still good and I don’t feel down. Odd considering my Mum died 2 weeks ago. perhaps I am on too much morphone that it keeps me this way! Love to you all, Val (sorry for rambling on a bit). X
Thanks for the tip Laurie. I had picked up that I had to take the pills within 30 minutes of eating, but wasn’t too sure why. One less question for my onc when I see her on Friday. I was looking forward to my week off next week until I read the other thread and realised I might feel worse now.
Marilf, hope your kidneys are recovering and they get to the bottom of it.
Scottishlass, hope you got your blood transfusion sorted out. I’ve also found Im struggling to eat now I’m in the 2nd week of 1st cycle.
I get results back from my baseline CT scan on Friday, so now starting to go into the usual mini-panic beforehand. I have to go without OH this time as he’s having a hernia operation on the same day. Really was tempted to get him to delay it but he could have had to wait months for another date and we want to get one thing off our plates now.
Hi All
Too knackered to post anything meaningful (!) however just wanted to say Val that I have been banging my head against the techy wall for about 6 months now that there are way too many sections in the secondary forum but no-one wants to acknowledge this or listen. It is way tooo difficult to negotiate, especially with a chemo brain. ! secondary section would be fine with some sticky threads at the top with maybe a meet up section as well.
I despair and will continue to chat to folk on the FB group and the US site which are much more user friendly.
Lx
Finally have some good news. CT scan was clear so just seem to have primary BC and skin mets to deal with just now.
Of course it doesn’t stop me thinking the pressure I’ve had in my head is brain mets when I know rationally it’s probably just stress related and thinking the niggle I had in my hip yesterday was bone mets, but at this stage I’ll take what I can get.
Too early to tell if chemo is doing much good so will have to wait another 5 weeks for next onc review.
Great news Gail. So pleaed for you. Hope your husband’s operation goes well and his recovery swift so that he can look after you. I too still have troube finding threads that I have been reading. I keep getting posts that are not there. How newbies manage I do not know. At least we know WHAT we are lookinf for, just do not know WHERE to locate it! It is so hard as there are different ways to find things. Glad I am not the ony one struggling with the site.
Hello to everone else. Marif, Granny Scouse. Fowy Geewhiz, Steris, Laurie and al. Please keep posting to keep this thread near the top. …just need to know which section it is hiding in!
I had my blood transfusion. Toiok 7 and a half hours in the ward…far far too long a time. The ward should be ashamed. Been busy with Solicitors sorting out Dad’ and Mum’s money and Isa’s. Now having a restful afternoon doing NOTHING at all as worn out despite the new bloods…must have been a man’s blood! Wishing you all a pleasant weekend. But don’t forget to post. Love Val
Here’s to a restful weekend. A close work colleague was married today 6 months after completing treatment for a rare vaginal cancer. It’s wonderful to hear of people getting on with their lives.
I’m now on day 5 of cycle 2 of cap & feeling 110% better than cycle 1 now that my dose has been reduced to 2000mg x 2
Despite feeling well, pain free & living a normal life all insurance companies have written me off. Onc says risk of any issues is low so I’m tempted to listen to this & have my holiday just been cautious - no bungee jumps!
Hi Mildred,glad things are going well on the capecitabine. I am in the middle of cycle 7. MRI of spine shows mets stable this week so I am very pleased! Just wanted to say re trip to States maybe you could get cover for everything except breast cancer…to protect you should you get run over by car or loose luggage…sorry to be so cheerful! Pamx
Hi all
I have just started cycle 14. usually feel fine first week not so good second,mainly tired. Mentioned at hospital appointment on Tuesday that my chest felt tight and was sent off for ECG but all was well, having another CT scan at end of August to make sure its still working, I sometimes have my doubts, none of the hormone thrapies worked, I use to be really positive but after 4 reccurences find it harder to be now.
I think some sunshine would be a good tonic, wheres it gone?
Coming towards of cycle 7 of cappecitabine and fingers now sore and wearing unsighly micropore on thumbs! Been sleeping a lot today. Got up late after lying in bed reading or listening tot he radio. Had a relaxing afternoon then later I went upstairs with the laundry and the bed looked so inviting and thought sod it I am going back to bed…and although I started to read a new book I was soon fast asleep. Hope all Cap Chemo ladies are okay this weekend and hanging in there. Love Val
Marif, Don’t think they can specially give me women’s blood next time! But a bit more energy would be good!
I haven’t post one because I can’t get on the web site and I’ve lost a few post so given up!
Gail the only way I can manage taking the Cap is to have two anti sickness tablets before each dose. I’ve tried to cut it down without any success. I spoke to my chemo nurse and she said if that works for you just carry on.
Val - for the last couple of cycles I am really tired and have good days but suffer for them and I’m fed up being so tired. My fingers have a similar syptoms to y ours. I can’t work my phone as it has a touch screen its really strange. I’ve woke up not being able to feel my hand, I just rub it quick to try and revive it.
Things are a little better as I’m having my 6 week break then having my ovaries removed at the end of the month before restarting chemo/. I’m going to ask my oncologist for another reduction. My poor feet/hands are peeling dispite using udderly, flexitol, E45 & Aveeno.
I putting lots of bran and fibre into my diet which is easing my constipation - I think not only is it the chemo but also all the painkillering drugs I’m on.
I feel awful moaning when others are having a worse time than me so sorry ladies. Hope to chat later if I can get on.
Hi ladies - I hope to join you soon! I was going to a while ago but I went for a trial at the Marsden. Sadly this did not work so back to chemo number 4! At the moment I’m recovering from two severe infections nd building up strength to join you. So off to order udderly smooth cream amazon.
Sadie Xx Xx
Ps glad to have found you. This site is a nightmare, nd no one is listening - are you bcc??
Well to the Xeldoa/Cap club - great thread with lots of great info ans support here so your in good company. I wish you well on cap and hope you respond well to the drug. Its worked well for me baring the hand/foot, neuropathy which is getting worse since I stopped taking it nearly two weeks ago and after 9 cycle fatigue it a problem for me but I do tend to over do it when I feel well!
Val thanks for your good wishes. I when for my pre assessment on Wednesday had a few shakey moment when I thought about back tracking. Nurses description of op put me off especially when she said they are quite brutally ;-( but have decided to bite the bullet and go for it. I also found out they are going to remove my tubes still and I asked if they would biopsy everything when it was removed and she said that they would. So another waiting and nails aren’t look to special I’ve covered them up with red nail vanish.
To echo Sadie - I had trouble getting on here Tuesday and I’ve tried to post on some threads only to be disconnected half way through. Changing threads seems to take forever is there any update/progress on the gremblins still on the BCC site. Thanks