Xeloda / Capecitabine - Your Top Tips, please?

[marli]

Hi everyone  - hope you are enjoying the sunny weather. 

Racer, how is your cape going.  My higher dose seems to have set of foot problems as yesterday they started feeling sore and this morning were red and the heels are painful. A bit like having a big blister on the bottom of the heel. Have been creaming well and find wearing my memory foam Hotters if more comfortable.

Had a "big D" moment yesterday and got caught short - hate that. Other wise not too bad.  Marli x

[george]

Good news, Racer, regarding your platelets. Hope the upward trend continues. I have a sugar weakness too🙄
All the best with Cape

George x

[george]

Hi Waffles

Lovely to hear from you. How are you getting on? Hope new treatment is being kind. Keep me posted😊

George x

[Moijan]

Hello ladies! Oh Dear! Its the 20th May already! Wasnt expecting it this earlyxx

Well done Racerxx

[Barton]

Hello racer, great news! Well done for those blood results! Re the blood on your pillow, I sometimes have very small nose bleeds, and my Onc has said it is the Cape. Worth you getting it checked out, though. Keep an eye out in the meantime.

Hugs. Barton.x

[racer]

Hi everyone jjust a quick update. I went for my blood results yesterday and my anaemia level is slightly better and my platelets have increased to 125 . So I can start my Cape today. We are just hoping it is not a red herring
.i have been quite tired this week and my right hip is aching so needed my walking stick s. Been talking about strange things and giving funny answers . Perhaps it is due to me not having much sugar .
I woke up to some blood on my pillow think it was my mouth. So will keep an eye on it.

Hope you all have a good weekend Cape Crusaders and keep fighting this disease .

Racer xxxx

[Barton]

Hello marli - sorry, I thought that was your daily dose, not your twice daily dose! That is actually quite a high dose then! I'm currently on 1800mg twice daily making it a daily dose of 3600mg. I started on 4000mg per day, though, and then it was reduced after about 7 cycles.

Thanks for the info, Kirky.

Hugs. Barton.x

[marli]

My dose is now  2150mg morning and evening ,4300mg a day. I am only 5ft and weigh 11st 7 so think that is normal dose according to Google. So hope that is about it. So far so good. Marli x

[kirky_68]

Hi Barton, if dose is morning and night that's the max dose for someone of medium build. I was on 2500 (5000 per day) but am 5'10 and 12 stone. Reduced back down to 1500 @ 2 after s/e on the max.

[Barton]

Hello marli, sorry to read about your stents - that sounds nasty! I have not had to self- cathetherise, but I do have to be very careful as my kidneys are a bit "funny", in that I have a generally high (higher than the average) level of bilirubin, and a high Creatinine level - so I have to drink a lot each day. I did have to have an Ultrsound a few weeks ago to make sure my urine was not going back up the tubes to my kidneys (it wasn't, luckily). That was because of an extremely high Creatinine level for that cycles' chemo - I wasn't allowed to have it that cycle. It seems to have been a one-off luckily as it has come down since to what is more or less normal for me.

What I'm (finally!) getting round to is that is there an alternative to the stents for you? Has your Onc told you to try drinking more?

Re your Onc increasing your dose of Cape, I think that is still quite a low dose compared to most people. However, if you are a tiny person with a small frame and very slim, that could easily be right. I was told the dose was based on your weight to height ratio.

Sorry I can't be of much help. I would definitely say it's worth asking your Onc if there are other alternatives, though.

Hugs. Barton.x

[marli]

 Hello ladies - hope everyone is continuing to stay well. Had to smile at racers comment that Oncs. don't tell us things early only when they cause a problem. 

I'm finding that at he moment regarding kidney stents. Was told I need them to keep kidneys healthy to deal with chemo. Wasn't told that they could be uncomfortable and would need replacing every 3-6 months, which involves an op with general anaesthetic. Now been told that I will need to self catheterise to ensure that the bladder is emptied completely. I'm very uneasy about this. Anyone else had this?.

Started 2nd round of cape after seeing onc yesterday and she increased the dose to 2150mg ( from 1650Mg) so I am hoping that it does not cause me too much of a problem with se's. She checked the lumps and bumps that I was worried about and they are OK ( one in tummy is a hernia from laparoscopy for biopsy!!)  Kidneys are slightly larger and presumption is urine retention hence problem with stents. 

Blimey if its not one thing it is another!  Continue to stay well ladies.  Marli xxx

[Barton]

Hello George, yes - we have rain too - not for 3 days though!

Glad you are feeling better! Glad you are getting an extended rest from Cape and that Tamoxifen is working for you.

Enjoy your feel good stuff.

Hugs. Barton.x

[Waffles]

Hi George,
Great to hear you are feeling well and getting a break from chemo. Hope your new hairstyle turns out well. Waffles xxx

[george]

Hi Barton

Thanks for your good wishes. I saw the oncologist yesterday and, although TMs have risen slightly, he is keeping me on Tamoxifen for another month. Really pleased as I feel I am only just back to 'normal' following liver resection so it is good to have a little more time before I start chemo again. Cape has been very good to me so certainly not knocking it, but it does feel good to only have to take one tablet a day. Have planned lots of 'feel good' things to keep me busy. Having my hair cut and coloured today which feels wonderful as, this time last year, I was bald.
Hope you and all Cape Crusaders are having a good week, despite the weather -3 days of interminable rain here ☔

George x

[Barton]

Hello George, I hope you had a wonderful time in Valencia?

Well done for doing the Race for Life - wow! I am really impressed, and such a lot of money raised, too!

Fingers crossed for continuing on Tamoxifen! Good luck for the Onc visit - let us know how you get on.

Hugs. Barton.x

[george]

Hi ladies, just been catching up with all the news while I have been away. We had a 5 day break in Valencia and, since then, I have been to see Evita and Funny Girl, both really good shows. Proud of myself today though as I took part in a Race for Life event and our team raised £1,6000 for Cancer Research. 😊All very emotional, but so worthwhile.
Great to hear all your good news stories and so pleased things are looking up for you Racer.
I am seeing onc on Tuesday and, as he will have results of two blood tests, I am expecting to have to go back on Cape. Would have liked a little longer on Tamoxifen, but gut reaction is it won't be strong enough.
Lovely sunny day so off to read the paper in the garden. Enjoy the rest of the weekend ladies x

[racer]

Thanks everyone . I was drinking several cans of pop and glasses of pop . So it was quite excessive . An odd drink maybe ok . I have always had a sweet tooth .
Trying the flavoured water with no sugar . It is hard as my kids like sweet things too so trying alternatives. Definitely not drinking any alcohol . Hopefully we will see over the next few weeks what happens with glucose levels. They have come down some. You would think Oncologists would inform us about these problems that occur or at least refer to Dietician . I know we have to avoid grapefruit which I don't particular like . It is just another thing to be aware of with Cape.
Just glad I mentioned it and saw the GP so I can start cutting back .
Hope all Cape Crusaders are having a good weekend.
Cyber hugs to you all xxxxxx

[Barton]

Well done Angela for your 7th cycle of Cape. Re sugary drinks, it also something I am very aware of. I can't bear the taste of plain water these days after having to take all these tablets. I used to love water, but now I only find it bearable if it is ice cold. I do always take my tablets with plain (ice cold) water. However, as I am supposed to drink a lot, I have a three-quarter full glass of water, which I top up with fizzy lemonade - only a very small amount, but it is enough to add some flavour to the water without drinking full glasses of it. I don't actually like fully fizzy drinks - I would rather drink them half flat, so adding them to water helps in that regard too.

Hugs. Barton.x

[Barton]

Thats very encouraging to hear, racer! Well done! Sorry about the borderline diabetes though - I know it's just one more thing for you to have to think about. Glad your platelets are so good and have stabilised. Also good news that you can continue with Cape and that it is helping you. Glad also to read you haven't suffered vomiting for a week. Good news almost all the way round! It always encourages the rest of us to get good news.

Hugs, and fingers crossed as requested! Barton.x

[angela60]

I'm on cape my 7th cycle next week will be starting vinorelbine as well.regardind sugary drinks, I too crave sugary drinks first thing in the morning (namely lucozade pink lemonade) have it every day nothing else will do got to be that, queer!! But think I better try cut down cos don't need diabetes on top of everything else.

[racer]

Aaah Thank you Marli . Forgot to say that the GP said that my Chemo meds are not helping with the increased blood sugar. He said normally the pancreas can deal with the intake of sugar and it can't manage at the moment due to the meds. So I have got to be a good girl lol
Xxxx

[marli]

That is good news racer. Have been following hour posts since I joi ed this thread and it is reassuring to know it is working. Have a lovely weekend.  Marli. Xx

[racer]

Hi everyone hope you are all are having a nice weekend.
Just to update everyone that I saw my Onc on Thursday. He was pleased with me. My liver has stabilised and platelets are 81. My Hb has dropped. So agreed to start Cape next Friday for a week and 2 weeks off . Mentioned about craving for sugary drinks. Did a glucose test and it was 16.4 . So he referred me to the GP . Feel really positive and so pleased that I think the Cape is doing something .

Rand GP Surgery and was advised to have more bloods done for glucose. The test can tell how my glucose levels have been during the last 6-8 weeks.
Had appt with GP and my bloods were 5.2 . He said that I am borderline diabetic however felt that it could be managed by diet . So no more sugar loaded drinks and sweets . I don't know have good news from Onc then I create another problem .

But I do feel stronger. I had a couple of vomits and not had one for nearly a week. Hopefully on right track and keep fingers crossed. If it slows the progression and gives me more time I will be happy .

Sending cyber hugs to everyone . Racer xxxxx

[Barton]

Thanks for that info, Carolyn - I didn't know that!

Moijan, I think they do that at our hospital, too, but not sure if it is the actual morning of my appointment - that would be much more useful.

Hugs. Barton.x

[Carolyn52]

Hello cape ladies
i was reading online that cape was originally a successfully strong iv chemo but was made into twice daily pills to.make it more easy to tolerate so you are all popping a very potent chemo and not "dolly mixtures" !!
Xxxxx

[Moijan]

Yes, Sandra,  That  would have p d me off too...I obviously hadnt realised. Actually, my primary got missed, so now attend elsewhere and i currently get copies of drs letters, but im very happy with my onc..the oncs all have group discussions with the radiols /other specialists on the morning of my appointment....I guess thats what might happen everywhere.. They are closely watching an area for me, which will be reveiwed with a bunch of scans in a few weeks.

Have noted some muddly bits in gp letters written by junior doctors in the oncs absence tho

very best wishes,

Moijan💚💚💚

[Barton]

Hello Sandra, so sorry to read of your progression - worrying, isn't it? However, I'm glad to hear at least someone seems to be on top of things for you. Well done on completing your 6th cycle. I hope the Vinorelbine/Cape combo works for you.

I hope you have a lovely week away for your birthday. It's my 60th this year, too - it seems quite a lot of us on the boards are hitting that milestone this year!

Hugs and best wishes. Barton.x

[Barton]

Well done, marli! Tiredness is an issue I'm afraid - I think it's the stress that the chemo puts on your body - it is designed to kill cells, although hopefully the cancer cells go first! However, it does kill ordinary cells as well, so the body has to work hard to replace the necessary ones!

Sorry you are also experiencing nausea. Luckily, I haven't had that as an se, but I can see how debilitating it could be.

Hugs, and enjoy your week off! Barton.x

[nicky08]

Hi Sandra and a very Happy 60th Birthday today 🎂🎈🎉🎁😊🍾 Shoukd we now call you Sandra60? 😉

Have you anything nice planned? If not it sounds like your short break is just what you need to take your mind off everything. It dies me and my OH wonders when we get away as when you are in dufferent surroundings you do manage to forget about the dreaded SBC! Enjoy.

As to your onc, he is a bit of a liability isn't he? Thank goodness the radiologist did interpret the results - as they should do. Chemo does help with aches and pains with your bones as I've found over the years so it could be worth giving Cape a few more cycles on its own before your onc adds another chemo? Just a thought. And if you really aren't happy with him you can get a second opinion to check you're on the right course of treatment but still get care/treatment at your local hospital, you don't necessarily have to change unless you go onto something involving a trial which tend to be done at the larger cancer centres.

Anyway, get on and enjoy yourself on your special day.

Nicky x

[Sandra59]

Hi Moijan,

I would, but this is not the first time.  I had a bone scan prior to starting cape in January, my Onc told me it was clear and the considerable pain I was in was nothing to do with cancer. I saw the Macmillan Nurse 6 weeks later who looked through all my reports and told me that the radiologist strongly felt that there was metastasis in my hip and ribs. When I next saw my Onc I asked him about it and he was very vague and wouldn't comment.

I hope everyone else is getting on well with cape and managing to enjoy life, I am looking forward to a week away next week and a change of scenery.

Hugs to you all

Sandra

[Moijan]

Hi Sandra,

i think cons Radiologists are the most expert at reading the scan....wonder if hed been away, or maybe behind in his checking of  scans, my own onc said last week that the rads cons had picked up on Some progression when mine was reviewed on the morning before my appointment....

So, give your onc the benefit of the doubtxx

hoping all. Is going as well as, Moijanxx

[Sandra59]

Just finished my 6th cycle of cape and the only side effect I have had had been  the complete lack of energy to do anything, I didn't even bother to take my anti sickness tablets during the last cycle as the nurse told me I didn't have to. I had my CT scan after the 4th cycle and results after the 5th, my Onc was happy with the results and told me to carry on with cape as the lymph nodes in my chest have shrunk, as there were no problems, my next appointment was with the oncoligy Nurse last Monday.  Everything was fine on Monday and I picked up my next lot of cape.  When I got home there was a message on the answer phone from the Onc's secretary saying that he needed to see me before my next appointment.  So it was back to the hospital today, 25 miles away, and a wait of 1.5 hrs to be told that the radiologist has reviewed my scan and decided that there is progression of the cancer in my ribs and pelvis, my Onc had previously written to my GP saying that he didn't know why I was in pain with my ribs and the pain in my hip had been put down to arthritis, the pain in both areas has decreased since I have been on chemo.  They are going to add vinorelbine to the cape along with bone juice but I am not starting it for 10 days as we are going away for a few days to celebrate my 60th birthday tomorrow, at least I have got an extra week off cape while we are away!  I didn't have much confidence in my Oncologist before, I have even less now, but at least someone else reviewed my scan and picked up on the deterioration.

[marli]

Good morning ladies, a lovely sunny morning here today. Hope everyone is doing well today.

Finished my first 2 weeks of tablets this morning. Things seem to have been OK without any major se's.

The major problem has been fatigue with a little nausea. For the first 11 days I was so tired I could not be bothered to answer message and texts or even to talk to my husband at times. The most activity I did was 20 minutes shopping and then have 2 hours sleep. Looking back over the last 2 weeks I realise that I was feeling somewhat depressed , which really is not me.

However, reading back on this thread I did find it reassuring that this seems to be normal.

Well let's see what my week off brings.  Thank you for your support.   Marli x

[nicky08]

Hi racer and good to hear from you. I'm glad you got away for a couple of days but sounds like it was a bit too much for you overall, I hope you have managed to rest since and feel a bit better.

Helen - great news and good for you planning a few holidays.  We have always done that once settled into a new treatment regime so we're hoping to plan something soon after a few months uncertainty about which treatment to move on to.  

Nicky x

[racer]

Thanks Barton . It is funny what foods you go off. I have gone off chips and cannot face big meals. I tend to live on soup and ensure milkshakes when I am really unwell. It frustrates my Hubby when he is trying to cook a meal for five us. Sometimes I cannot even be in the same room as my family when they are having a meal. If I have bread sometimes it is like eating cardboard . The joys of Chemo meds . I have lost some weight which I needed to but was hoping to do it differently .
I will speak to Onc on Thursday who may have some suggestions .
Thanks Racet xxx

[Barton]

Hello racer, in answer to a couple of your questions: Yes, my hair has definitely thinned. I think this is mostly due to the Cape, but it was a little thinner before, possibly due to the hormone therapies. Also, no, no sweet cravings, but I tend to crave savoury stuff! I am actually, off (to some extent anyway) chocolate! I know - weird!

Hugs. Barton.x

[racer]

Helen what lovely news . Well deserved holidays. When I hear news like this it gives me hope . Keep us posted about your holidays and experiences.
I feel ok at moment just a little queasy at times . I just have a rash on my scalp and neck which could be to do with either the Cape or low platelets. I had itch feet and arms during the night too. My hair is definitely thinner . Don't know if anyone has had this too.
Oh and craving sweet drinks such as Cola / Pepsi. My hubby said I am like addicted to it. Just pleased that Strawberries are nice at the moment and is taking some of the sweet craving .I just miss my Bicardi . I never drank a lot of alcohol before I was diagnosed but not touching it due to my liver problems. My Hubby said one won't hurt me but I don't want to cause anymore damage.

Hope everyone is having a good weekend and the weather looks good. Hugs to everyone xxx

[Barton]

That is wonderful news, Helen! Thank you so much for sharing and cheering us all up!

Wow, you have got a busy time ahead, but the best kind of busy - HOLIDAYS!!!  I hope you enjoy every second of them - you deserve it.

Hugs and best wishes - long may Stable Mable reign.

Barton.x

[Carolyn52]

Oh Helen ..what good news for you ..the cape must be right for you .
Just thinking back to this time last year ..you were very poorly and look at you now ..holibobs planned and your summer to look forward to.
Hugs xxx

[HelenAquarius]

Hi cape Crusaders... dropping in to share some happly news..just done cycle 8 on cape and scan results show no progression :-))) Very pleased. 

I have felt very fatigued the last 2 cycles so my onc and I have agreed to move to 2 weeks on 2 weeks off. Not had a dose reduction.  

Planning many trips over the net few months.. Spain for May half term with the kids, weekend in Cambridge at a humanist conference, Stonehenge Summer Solstice festival, Camp Bestival with the kids and most excitingly 2 weeks with hubby touring Europe in his camper van in July.  I love this chemo, apart from my poorly feet!

Hugs to all xxxxxxxx

[Barton]

Hello racer, thanks for retirement info - yes, really looking forward to it, but still feel a bit like I'm on holiday at the moment!

I am sorry you had so many problems on your short break away. I hope you managed to have a good time some of the time. Bourton on the Water is lovely, although it is many years since I have been.

Good luck on Thursday with your next Onc appointment. Please let us know how you get on. Glad you feel good about the Cape.

Hugs. Barton.x

[racer]

Hi everyone Hope you are all ok . I retired in 2012 and never looked back . Barton you will be able to relax when you can and not stress over work . I just felt overwhelmed with work and could not deal with with the people I was suppose to be helping .
We managed to go away but had to scale it back to two nights as I was feeling rough. We went to Wiltshire as we like the area and the motor racing at Castle Combe. I drove into Chippenham as I needed to buy School shoes for the youngest but I could not do it when I got there . Instead went to Castle Combe with the three kids. I just felt absolutely exhausted and felt sick . Luckily we were staying another night as I don't think I would have got home.
Ext day we stopped off at Bourton on the water and used my wheelchair. I did not like the wheelchair as the kids and hubby were taking turns to push me. I thought they were going to tip me into the stream and when crossing the road I nearly fell out of the chair . Think it is something I will have to get use to as I can't walk very far .
I had nausea and vomiting from Sundaybunti Thursday when I finish this cycle of Cape. I have also had two occasions where my tongue has been bleeding . We had no ice so I had an ice lolly which stopped the bleeding . I have an Onc appt on Thursday so will tell them .
Today I feel much better but need to pace myself . I do think the Cape is having some effect which is positive . I just need not to book things on a Cape week so I can rest . For 2-3 days I was in bed from tea-time which I think helped . Also when I am not eating fringe the ensure vitamin shakes which are not too bad . At the moment just craving for sweet things.

Sending love and Cyber hugs to all the Cape Crusaders xxx

[Caffy]

Thanks everyone, we'll try and get some vit B6 tabs and I'll suggest bathing them in cool water. Good luck to you all with your treatments xxxxx

[Moijan]

Yes George

lovely to hear from you, but so sorry about the surgeon...must have been traumatic to discover this

recently.....we put our trust in people and then get let down...

hopefully you werent diddled, but do check and see if you are eligible for compensation....

[nicky08]

Hi Caffy

As the other ladies have said, he seems to be doing all the right things but I do know that some people seem to suffer more than others.  I was prescribed pyridoxine when my feet and hands became a bit sore, its Vit B6 and supposedly helps.  I can't say for sure that it did but I didn't have any real problems with either and only took the tablets when it was bad.  You/your hubby should be able to get them from your GP or onc and its a high dose tablet taken about 3 times a day if I remember correctly.  Good luck.

To all Cape crusaders - how flippin' cold has it been this Bank Holiday? Brrrrrr. Very chilly today so not doing too much but did go out for the day yesterday to Kew Gardens - beautiful azaleas, rhododendrons and blubells - very uplifting.

Hope you have all been able to enjoy yourselves one way or the other.

Nicky x

[Barton]

Thanks, George. Just more crafting as I need to finish that project. Looking forward to it. Hope you have a good one, too.

What an apt quote, George!

Caffy, hello and welcome again. So sorry about hubbys feet - I know exactly how painful that is! However, he seems to be doing everything right, so not sure what to suggest. I know the Vaseline worked wonders when my feet were bad, but you do have to put your feet up as much as possible a. Because walking whilst squelching and slipping in Vaseline is just horrible (and dangerous!), and, b. Because putting stress on the feet makes things worse. I believe it is because the chemo leaks out of all the tiny capilliaries when pressure is put on them, also when put in hot water. Actually, he could try bathing his feet in chilled water then patting them dry and then creaming them gently. Hope things improve for him soon. Wishing you both all the best.

Hugs. Barton.x

[Barton]

Marli, love that idea! Just what he deserves! Why are all these dreadful things always perpetrated against women?

Hugs. Fx

[george]

Hi Barton

Yes, he seemed very charming and had a huge female fan based which, ironically, seemed well deserved. As the bard once said ' a man may smile and smile and be a villain' (or something like that 😉)
Glad you had a good day crafting. Hope you have something nice planned for today.

George x

[george]

Hi Caffi

Everyone is welcome here even though it is a place none of us particularly want to be. Sorry to hear your husband is suffering, especially as it sounds like he is looking after his feet. The other ladies might have better ideas as all I can suggest is Flexitol and bed socks at night to help cream soak in. I too had sore feet which became red and quite sore. A dose reduction did ease things for me. Sorry I have not been more help.

George x

[george]

Gosh Marli, you did have a long wait for your treatment to start. No wonder you were stressed. We always feel better when there is a plan and we feel something is being done.
I like your friend's idea for surgeon, but suspect he wouldn't!

Enjoy rest of bank holiday everyone

George x