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Xeloda / Capecitabine - Your Top Tips, please?

Member

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

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
Member

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

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

Member

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

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
Member

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

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

Community Champion

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

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
Community Champion

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

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💚💚💚

Member

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

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

Member

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

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

Community Champion

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

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

Member

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

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

Community Champion

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

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

Member

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

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.

Member

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

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

 

Community Champion

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

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

Member

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

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
Member

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

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

Member

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

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
Member

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

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!!! Smiley Wink I hope you enjoy every second of them - you deserve it.

 

Hugs and best wishes - long may Stable Mable reign.

 

Barton.x

Community Champion

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

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
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Member

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

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