Weight gain on Capecitabine

Evening All,

I'm half way through my 14th cycle of Cape, To start with had peeling feet and sore ones too. But the side effects have seemed to ease off. I'm on 2400 twice a day. Skin on my hands look like elephant skin, but it's bearable.

I've been fortunate that I don't suffer from sickness or tiredness either and I ain't a particular young bird!!!!, at the end of the day it's keeping me alive so I tolerate the minimal side effects. For me personally this has been one of the easier chemo's to have,

Beat wishes

Helen xx

Hello Helen I’m not on as high a dose as you and my hands and feet are sore and end of fingers and toes are numb but to echo what you said I agree and I’m an older bird also.

 My family think I should be in bed sick but I’m like you I just get on with it I don’t like the alternative!! 

Take care xx

Hello all - seems I'm a year late to this discussion but here goes. I had a secondary breast cancer ( May 2018) which had fractured my vertebra so had to have emergency neurosurgery with rods and screws to repair my spine. My mobility was seriously affected and had to abandon my allotment which had been my pride and joy. Had radiotherapy followed by 2 trial hormone treatments. Neither worked and I have more mets on pelvis, sacrum and liver.

Started on capecitabine in January 2019 (3600g) per day. Initially on 2 weeks on 1 week off and the feet were really bad, but doc changed it to 1 week on 1 week off and it has improved things. I use Udderly smooth with urea cream which I buy from Amazon and I keep it in the fridge - great relief when the feet are on fire. I have also bought several pairs of memory foam trainers in the prettiest colours so wear them most of the time. Can also get quite tired but no diarrhoea or sickness.

However, my big problem is weight gain. 4 years ago I lost 5 stone and had managed to keep it off for 3 years and I was feeling and looking good for a sixty something!!  Since taking capecitabine I have gained 2 stone in 4 months and am mainly on the same maintenance regime that kept it off before. It's very depressing and doesn't help my weak back carrying this extra weight. I know we don't want to moan as we are still alive but sometimes these things can get you down.

Given that I plan to be around for a long time yet wondered if anyone has any positive new on weight gain???

Hi . 

  grannylara LondonLass

I am copying in people in case they have more information on these areas than me

I was started on  Capecitabine oral chemotherapy in January 2018, following a secondary breast cancer diagnosis 4th Jan. The dose was reduced from 4x 2 a day to 3x as my feet and hands suffered a bit. 

I have Mets in spine and sternum, in addition to the original site near my heart. First time around ( 2013-14), I had a lumpectomy and Radiotherapy ( which resulted in damage to my lungs and Tieze’s syndrome). Then I was on AI Arimidex ( AstraZeneca) for 10 yrs, did about 5 yrs before 2nd diagnosis. 

I’m taking the following on prescription: VitD3, Gaviscon Advanced, Duloxetine ( Cymbalta), Apixaban ( Eliquis) 2.5 2xdaily  blood thinner tablets ( been on these a week).

Previously, I had  6 months of daily blood thinner injection  in stomach. I had blood clots in my lungs ( 1 in 10 people with cancer get DVT or lung blood clots ).

Yes I have put on weight,  due to inactivity and enforced early retirement,  obviously on ill health grounds. I don’t have a regular focus/ list of activities yet; as the daily visits to GP for stomach injection sort of got in the way!!

The side effects of Capecitabine are/were “lots” of fatigue/ weakness. 

I was on the Capecitabine brand Accord until last week.

A visit to the local Pharmacy near hospital resulted in the news that due to competitive tendering by another company; the brand issued to chemo patients by my local Health Authority  now  is Morningside HealthCare ( based in Leicester).

The Pharmacist was very helpful and provided www and staff contacts in the Oncology Pharmacy Dept to me for research purposes. 

As I would like to know:

which is the brand available that  is most like the original brand “Xeloda “ in composition before Xeloda came off patent? 

Does anyone here have any ideas please? ? Long shot I know. 

The short time I’ve been on this other brand ( Morningside), I feel even “more”  tired. I am guessing it is the fillers/ colours in the tablets ? ?

The Apixaban tablets give me some acid reflux, nausea and itchy skin. If it becomes too much, I will ask the Oncologist to refer me to another blood thinner medication. 

Thank you for reading this

Judith xxx

Sorry everyone - I've not been on here for the past 10 days or so as I've been dealing with a slipped disc (not related to the secondary cancer in my spine) so I've been flat on my back and asleep from the painkillers most of the time! 

I did 9 cycles of Cape in 2017 before I was taken off it due to the severity of the hand/foot syndrome.I think my oncologist is hyper when it comes to sticking to guidelines as there seem to be others who suffer to the same extent who are kept on it! 

Anyway - I'm not sure about wight gain on the Cape - I DID gain weight during the time that I was on it, but I also have to take steroids daily due to the type of secondary cancer in my lungs, and given that I've gained even more weight since I stopped Cape, it's more likely to be that than anything else. I now resemble a blimp, and it's certainly not helped by the reduced activity due to fatigue, weakness in my legs and breathlessness. 

I have NO idea what brand of Cape I was on - I never really look at brands, and for all the drugs I'm on, I've never really noticed any difference in any side effects between them (and that includes Tamoxifen)  - maybe I'm just lucky! 

sorry to hear that you're having side effects from the Apaxiban - maybe it'll settle when your body gets used to it! Fingers crossed for you. 

Evening all

I did post on here a year ago about my side effects from Cape. I'm now on my 29th I think, cycle I've lost count now! But it's still working Yippeee

Side effects are still my hands and feet looking like elephant skin, I cream up daily but never really found a deep moisturising cream. I've tried out loads. I love the foot sock things with moisturising cream in them, they help alot.

I suffer from sore eyes but I find if I close my eyes for a few minutes it helps.

Weight gain, no not really. Still very active as I compete my horse in Dressage and I have two more horses and two dogs that get walked twice daily. I think I'm very fortunate in the drug still working and able to lead a active normal life.

The brand I'm prescribed??? No idea as the tablets are doled out and put in a plain white box.

Best wishes

Helen xx

Hi Helen  

Thank you for your reply and it’s great that you don’t suffer from side effects  

The brand name is not usually on the outside of the white box, which is why I noticed when I saw that  the current white box had Morningside Health Care printed on the outside below the orange dosage label. 

The brand name is printed on the metal coverings of the tablets inside the box. If you have a look before extracting the tablets please.  Maybe I should be what you are on?

What is your secret please?

Love Judith xxx

Hi Helen

I apologise as you did say hands and feet like elephant skin !! 

That will teach me to do emails at this time of day. I have insomnia, so trying to do something practical, rather than wishing  I were asleep .

I have been using Udderley Smooth cream, got a sample from chemo nurse, then bought it on Amazon.

The Udderley Smooth replenishing cream has 20% urea, and this really helps the cream to be absorbed into the skin.

Saying that Weleda Almond Cream has a lovely texture too. 

Judith xxx

Hi I was diagnosed with secondary breast cancer in Dec 2016 after 12 years being clear!  Gutted.  It is in my spine and lungs.  Following a further lymph clearance I started on palliative Capecitabine Accord - I was dropped to 10 days on and 11 days off due to Palmer Planter syndrome effects. I also have Denosumab injections every 4 weeks.   I  had a DVT in May 2017 so have to administer daily injections of Tinzaparin as long as I am taking the chemo tablets.  I have to say I am finding it a walk in the park after the chemo and radiotherapy I had first time around.  Yes I get tiered - but that might be due to living life to the full .   I haven't put on any weight fortunately but have a constant runny nose. Perhaps have a chat with your clinical nurse specialist if you are concerned about your weight loss.  

Hi I was diagnosed with secondary breast cancer in Dec 2016 after 12 years being clear!  Gutted.  It is in my spine and lungs.  Following a further lymph clearance I started on palliative Capecitabine Accord - I was dropped to 10 days on and 11 days off due to Palmer Planter syndrome effects ( now 1800mg daily).  I use udder cream which I buy from farm supply shops and also CCS Foot care cream which was recommended by a chiropodist.  I have tried loads of others but find these 2 work really well for me after having horrendous very sore break down on my feet.  I also have gel insoles in all of my shoes - mainly sketchers.  So far so good - once my dose was reduced.  I am now on cycle 41!!!   I also have Denosumab injections every 4 weeks.   I  had a DVT in May 2017 so have to administer daily injections of Tinzaparin as long as I am taking the chemo tablets.  I have to say I am finding it a walk in the park after the side effects of the chemo and radiotherapy I had first time around.  Yes I get tired - but that might be due to living life to the full .   I haven't put on any weight fortunately but have a constant runny nose. Perhaps have a chat with your clinical nurse specialist if you are concerned about your weight loss. Here's to the next 41 cycles...……….

Hope this helps.  Take care everyone and keep living life to the full!