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Xeloda / Capecitabine - Your Top Tips, please?

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Aneemay Sorry to hear you are feeling so bad. Hope your onc comes up with something to help today  

B xx

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Dear Barton      I will be thinking about you today. Hope it's good news  B xx

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Barton

Yes, will definitely ask for a reduction, even if it is only for the Christmas period. I don't want Loperamide as my Christmas meal even if it does come with all the trimmings.
Good luck again for tomorrow. Hope you manage to get a good night's sleep.

George x
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks, George, for good wishes. I'm on 3600mg per day (2x1800mg). I was originally on 4000mg per day. Have only had the one reduction. Please do ask, if you are finding your dose too much. In fact, if you show them your hands, they will probably suggest it!

 

Hugs. Barton.x

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Annemay

 

Sorry to hear you are having such a rough time. I can sympathise as I find Cape very hard on the stomach, it is the big D with me which usually kicks in on day 10.  I am sure your oncologist will be able to alleviate your symptoms;  they are always telling us not to suffer with side effects, but to let them know. I am going to ask my oncologist for a dose reduction over Christamas as I really want to enjoy the festive period, cancer allowing.

Hope all goes well tomorrow  and you can start eating normally again. I know weight loss is  a worry, but you soon put it on again. I couldn't eat for a while and lost half a stone, but it is back on now.

 

 

All the best 

 

George x 

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Nicky

 

i met someone on a Penny Bhrohn course who was on Kadcyla and she was coping really well with the side effects and had just returned from a week's skiing holiday. She said the treatment targeted the cancer cells and didn't do as much damage to healthy cells as usual chemo. ( her words).  I know we are all different, and respond to chemo in different ways, but thought I would share this with you.

 

Good luck with the new treatment plan

 

George. X 

 

 

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Barton

 

godd luck for your scan results tomorrow. Know how you are feeling as I was in the same position next week. Also, know what you mean about sore hands and feet. My hands are bright red and really sore. Will ask for a dose reduction when see onc. How many milligrams are you on a day? 

 

Once  again, good luck for tomorow

 

George x

 

 

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks for the good wishes, Moijan and Nicky. Getting really nervous now!

 

Hugs. Barton.x

Community Champion

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Barton,

 

good luck tomorrow with your resultsxx

 

Moijanxx

Community Champion

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Barton.

Yes, it is Kadcyla I will be starting.  Will be checking out that thread as well as speaking to a couple of SBC ladies who I know who are already on it.  Hoping my SEs will be as minimal as one of them and not as bad as I have read for some!

Good luck with your results tomorrow, hope all goes well.

Nicky x

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello George, Cape is treating me ok at the moment, except for very sore fingers! Have had real trouble handling my pen at work today and yesterday, and the computer inputting I have to do! Oh well. Last day ofbmyvweek off today,vand Onc appointment tomorrow. Should get the results of the CT scan I had 3 wks ago, so Scanxiety setting in!

 

Hope you manage ok for the next few days, and have plenty of Loperamide handy!

 

Hugs. Barton.x

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello Nicky, so sorry to read of your progression! And needing to alter all your recent expectations-such a shame! I hope everything works out all right, and Kadcyla (?) works for you. 

 

Hugs. Barton.x

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Oh, Anneemay, so sorry to read this! Have you been taking any anti-sickness pills? I expect you have - probably your first thought! Hope you get answers and help tomorrow. Let us know how you get on.

 

Hugs. Barton.x

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi all,

feeling very fragile at the moment started my 3rd cycle last Thursday and it has been downhill since, I felt so bad Sunday morning I contacted the out of hours oncology nurse, she advised me to stop taking them and contact her Tuesday if I still was not any better, which I did. I have got an appointment tomorrow to see my oncologist for review. I have not eaten anything since Sunday morning when I took my last dose, I don't feel particularly hungry and when I try to eat start retching, even my supplements drink made me vomit. I have a cows milk intolerance and always have had a very sensitive stomach which doesn't help. My brain says you have got to try to eat something as I am losing weight but my stomach says Whoa ... you will only be sick again. Caught between a rock and a hard place springs to mind!!!! 

Any advice gratefully received. Ann xx

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Moijan

 

Thanks for your message and offer to PM. Will definitely take you up this. Seeing consultant again on Friday so will probably have lots of questions after that- if things haven't changed, that is. 

 

Hope your treatment is treating you kindly (if that is possible while on chemo) 

 

thanks again, 

 

George x 

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Barton

 

Thanks for your good wishes. On cycle 6 of Cape now. Two more days before my week off and dodgy tummy starts. Have planned a very relaxing day for Saturday. :-) How is Cape treating you? 

 

Hi Nicky, 

 

Sorry to to hear your news, but good to hear that you have a plan A. It sounds as if smaller lesions are harder to treat then larger ones, that was certainly the impression I got from the consultant on Friday-ironic really. I am expecting things to change for me too following MDT meeting on Thursday. Certainly, treatment seems to have worked really well  for you so far. Good luck with the new treatment and do keep us posted.

 

George x 

Community Champion

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi George,

Anything I can do to help. My surgery was to my left lobe, I think they said they took half of that. This was before my mets...they had noticed calcifield lumps within the biliary drainage within the lobe. Kings College Liver Unit did an MRI and were uncertain as to wether there was cancer, but said that as it was clearly diseased it should be removed. So I had it removed - it wasnt cancer at that time. My tiny mets came later and they are disseminated all over my liver, but most of them are too small to see . Pm me and I can chat more about it if you wantxx
moijanπŸ’šπŸ’šπŸ’š

Community Champion

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi george

Umfortunately its all change again for me - in between posting my info about having surgery and my onc phoning me late this afternoon to say that the MRI had in fact shown a few other lesions ☹️. These obviously hadn't shown up in my recent CT as they were too small, or in fact  have developed since the CT. Not what I had hoped to hear at all but it means I am now back to Plan A which is to start Kadcyla.

In answer to your questions my receptor status has changed from HER- to HER+ (which is when my liver mets were diagnosed) I had been HER- for 10 years! I wasn't able to start Herceptin at that time as my heart had been damaged by previous chemo but I started on Capecitabine. This worked for 18 months by which time my heart had been sorted out by my lovely cardiologist and I was able to start the docetaxel, Herceptin and pertuzamab combo. This was back in 2014. So, I am an unusual case and surgery wasn't an option before as I had about 4-5 lesions small lesions which is too hig a number for surgery or RFA. It was only in October when my CT results came back to show only 1 lesion remained and it had grown that surgery or RFA was mentioned.

Hope this helps and good luck with your own appointments and treatment.

Nicky x

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello Bousy, glad you are doing OK on Cape! Well done. I, too, found Docetaxol the hardest of my IV chemos (FEC-T in 2011). I didn't have any nasty reactions like you, but the bone pain was dreadful at night. Nails hurt, everything seemed to hurt! I was hoping that mwant it was doing it's job, but obviously not as I'm here in the Secondaries section of the Forum!

 

Hugs. Barton.x

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello George and Nicky, it sounds really positive that they think you both would benefit from an operation to remove parts of your livers! I'm sure they wouldn't suggest it unless they thought it would be of real help. Good luck to both of you, if they, and yoy, decide to go ahead.

 

George hope you are doing OK on latest cycle of Cape.

 

Nicky - glad your double chemos are proving very effective (apart from the one rogue met- how dare it?!) for you. And thanks for wishing us all luck on Cape.

 

Hugs to all. Barton.x

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Bousy and Nicky, thanks for your replies. Good to have people in a similar position to talk to. Bousy, I am on sixth cycle of Cape; it has definitely shrunk the little critters. One lesion started off as 12mm, but is now 5mm so do try to remain positive it will work. Different for everyon, I know, but it does seem to be an effective treatment and SEs, once you get used to them, are tolerable (In my case, sore hands / feet and dodgy tummy 😯)
Nicky, be great to keep in touch and compare notes. You have done so well to have bone mets for 8years and liver mets for 3. Did the Herceptin keep everyhting stable for that long? Did you not want surgery earlier? Where are you having your treatment? (Sorry for all the questions)
Do let.me know how you get on and, yes, be great to PM. I also have an appointment with my Onc next week so will be interesting to see what he says as I would have to come off chemo if op is way forward. So many things to think of.

Hope other Cape crusaders are doing well on respective treatments. I know one thing, it is blooming cold. Brrr ❄❄⛄⛄

George x
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Moijan and Waffles, thanks for your positive responses, making me feel much better about the thought of having an operation, although things might change after MDT meeting. Consultant hadn't had much time to analyse scan but, I agree, the fact he was talking about an op is encouraging even though I felt scared, and still do, about the prospect of an operation. How is your new treatment going Waffles?
Moijan, might be asking you more questions as you have had surgery. I have read up about the procedure and know it is quite major surgery. I am at the QE in Birmingham which has a reputable liver unit, so I believe. Things are a little complicated as I have only just transfered from another hospital so they have only just received my notes, etc. Oh well, will have to wait until Friday for final decision.
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Nicky and George, 

I only found out 4 months ago that I have liver mets as well as one on left lung and the bone mets as well. The onc has told me one of mine on the liver is 21 mm but nothing has been said about it. I am just finishing second lot of cape and haven't been too bad.

I started on Docataxel in February but after second lot I had a perforated bowel as diverticular had burst. Not had any chemo since so hope the cape works. I don't want docataxel again as it was bad.

Hope you both get on ok.

 

Liz x

Community Champion

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi George

Im exactly in the same position as you so maybe we can buddy up?! I have had liver mets for over 3 years now (and bone mets for over 8 years now). My liver mets have responded really well to the treatment I'm on (Herceptin and Perjeta) but one rogue lesion is playing up - the other 4 have now disappeared. The thought  was RFA, even though my lesion is slightly outside the parameters, but now we are talking surgery just to make sure everything is removed. My lesion is on its own in the right lobe so surgery is considered to be fairly straight forward  (if ever it can be!). I am waiting to hear back from the MDT meeting this morning but I have told my onc I will want to have surgery if it's the best option. Luckily for me our local hospital has an excellent liver surgeon and team and they perform liver surgery on secondary as well as primary liver cancer patients so I feel I would be in very capable hands. Maybe once we know what our individual plans are we can compare notes by PM or on here?

Nicky x

ps Hi to all Cape crusaders - hoping the treatment is being kind to you but killing those m

nasry little uggers off relentlessly!

Community Champion

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi George

 

i had a third of my liver removed due to a pre cancerous condition...the liver does regenerate....but yes, the thought of the op is 'yikes'

 

however, it is less usual to do hepatectomies for bc secondaries, so if they are suggesting that....they must have confidence that it would be helpful...ask lots of questions!  So you can make a well informed choice. 

 

Not sure where your hospital is, or if it has a liver unit? But Kings College Hosp london has a world renowned liver unit...you may want a second opinion?

 

very best wishes,

 

moijanπŸ’šπŸ’šπŸ’š

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi George,
I know getting bits of your liver removed sounds really scary but the fact they think it is worth doing and your mets are so tiny is great news. Good luck with whatever treatment you choose. xxx
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Forgot to say, he was talking about removing a third of my liver as I have 3 lesions, one at top of right lobe and 2 at bottom. Yikes and double yikes!
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Moijan

Thanks for asking. Bit of a mix up really as MDT meeting had not considered my case as scan had not been read. I had to wait 1.5 hours on Friday while radiographer read my scan and then consultant came up with a few proposals, main one being an op. I thought I could have RFA , but apparantly lesions too small, biggest one is 5mm. Good for me, but not for them. Have to go back this Friday when MDT meeting will have taken place and there should be a definite plan. However, op looks likely πŸ€•πŸ˜·πŸ˜¨. Hope all well with you

George x
Community Champion

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi George,

 

how did you get on at the hospital? Hope all was well?

 

MoijanπŸ’šπŸ’šπŸ’š

Highlighted
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Yes, think it is as Onc always used to ask me about my hands and feet. I used to get some leg pain while on Taxol. Always best to check with your team though. Hope you are managing to get some rest. On train to hospital. Yikes😯
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Think the chemo symptoms kicking in as have had tingly feet all night! Will mention to nurse tomorrow but does this sound normal for palitaxol? I'm pretty sure I got this on Fet/t too! X
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Thank you Barton xxx
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Thank you Bonareinsis xxx
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Sending you a big hug George and all the best. Thinking of you xxxx
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks, Bonariensis. Trying to remain calm, but not succeeding. Can't even have a drink as due to take Cape tablets in a minute. Oh well, this time tomorrow will know. Have a good evening. Hope things going well for you

George x
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Abney

Glad you're home, Take it easy, easier said than done I know.

 

Hi George

Best of luck with your scan results tomorrow, will be thinking of you.

B xx

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Get results of MRI scan tomorrow. Terrified. Doubt I will sleep tonight. Yikes 😯
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello Abney, glad you are home safe. Hope you feel less exhausted soon - it probably is the cocktail of drugs you are on, but take it easy and rest as much as you can. Hope the new chemo works for you. 

 

Hugs. Barton.x

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Abney

Must be a relief to be back home. I bet your little boy missed you. Make sure you take it easy. Glad to hear chemo wasn't too horrible, think it is one of the 'easier' ones - if such a thing exists. Hope you have lined up lots of dvds to watch while you recover. Spoil yourself x

Hugs, George.
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi ladies I got out of hospital yesterday after two weeks in! Just adjusting to being home again but just feels so strange! I'm so exhausted but I think the chemo this week was ok. I think it's all the other medication I'm on making me quite spaced out! Back for more chemo on Monday. Just hope it works. Still can't quite believe what happened!! Hope I can get my strength back soon but a relief not to feel as ill as I did before!! Sending lots of love and sorry for short post. Xxx ps thank you so much for all your well wishes xxxx
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Helen I'm not a Cape friend but I'm a friend and hope things settle down and you feel better soon. B xx
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Abney

 

Glad to hear things are picking up for you and that you are managing to get a rest. Sure you are being well looked after in hospital. As I said, I was on Taxol for a year and I did find it manageable. At least I had a good week off. No major side effects just slight nausea and occasional dodgy tummy, but that is chemo for you. Keep us posted.

 

Hi Helen, I too find week off challenging. With me it is the big D, real pain as have to be so careful what I eat. Usually lasts for a couple of days.  I felt tired during first few cycles, but not so bad now. As others have said, you can ask for a dose reduction. My onc said lower doses are just as effective and it is something I might ask for as I have been on maximum dose for 5 cycles now. Going to see how I get on with this cycle during week off. Also, seeing liver specialist on Friday as I have mets in liver so waiting to see what he says. The waiting, as we all know, is excruciating. However, signs so far have been good on this chemo and blood results indicating it does seem to be working. Hope you are feeling less fatigued.

Hugs  to all 

 

George x 

Community Champion

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Helen!

 

yes, like the others, I had an awful first two cycles on cape..then they reduced it and made it 1 week on 1 week off...and after that I was fine. So sory its knocking you out.....hopefully once your body adjests you will feel much betterxx

Moijanxx

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello Helen, yes, I'm afraid Nicky is right - the week off tends to be the worst - the following week(1st week back on pills) is a bit better, then it starts all over again! I did find the tiredness does get a bit better as you go on, though, although I do sleep better the weeks on the pills!

 

Good luck, Helen, and hope it works for you.

 

Hugs. Barton.x

Community Champion

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Helen,

I was on Cape back in 2013 and it took a few cycles for my body to adjust to them. I really thought of moving onto another (IV) chemo! Which shows how bad it must have been. There was a very old thread on here about the week off being the worst so I expected that however it did get better after a few cycles. I think we have to remember that is still chemo, even though we are administering it ourselves so it's no wonder our body complains. I suffered a few incidents of the big D, as has been described recently on here, but overall tolerated it well. It may be worth asking for a dosage reduction as the oncs tend to put you on the highest dose, for you, first and adjust it down if needed. I stayed on Cape for about 18 months on an 80% dose and it still worked really well so don't feel alarmed  if you reduce the does - it is a life balance!

Hope you feel better soon.

Nicky x

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Cape friends. Heeeeeelp!

had first two weeks on the tablets - now on my week off - and am feeling utterly fatigued. someone please tell me this will get better!!

 Xxx

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello Abney, so lovely to hear you are feeling better, and you sound more cheerful in your post, too. Sorry to hear you are having to go through another chemo, though, but I suppose that is the fate of all of us on this section of the Forum now. I hopd it works it's wonders for you.

 

Hugs. Barton.x

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi ladies just a quickie! I wrote a long post yesterday and lost it so that was frustrating! Just to say I'm still in hospital but start Paxcitaxol tomorrow! Can't say I'm overjoyed by the thought of going through chemo again but I have to do it! Slowly feeling stronger and actually it's not too bad being in hospital as im actually resting! Could be the shed load of drugs I'm on! So I'll be on a weekly dose with a weeks break and having six cycles! Let's hope it does the job!! I finished radio on Thursday so hopefully that has had some affect! Will keep you girls posted and I do hope you are all ok? Sending lots of love xxx
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

I know. All various tubs covering my bedside table, no room for anything else. Shame I can't use more exotic creams. Feet still red, but not causing any pain at mo. Fingertips sensitive. Perhaps might wrap myself in cling film tonight after apply creams (joking, honest. Think might be a bridge too far for hubbyπŸ™„)
Enjoy rest of weekend. I am having a couch potato evening. Too cold to go out. Brrrβ›„
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Wow, George! I think you have yourself covered (literally!Smiley LOL) with creams!

 

Hugs. Barton.x