ANOTHER HICCUP

Hi Tracey

Go for the Xeloda, I've only had a few minor side effects and if they occur they can tweak the dose to control them.

I originally was E+, P+ and HER2-. I had chemo before mastectomy and then radiotherapy. Started on Arimidex but noticed a rash developing just outside radiated area, switched to Aromasin while biopsies were done on the rash. Turns out that I was hormone refractory and would not respond to the AI's, tumour markers climbing. Biopsies came back E-, P- and HER2 -. Thought this meant I was now Triple Negative, I'm not, but the treatment is similar. Cannot access the targeted treatments, AI's or Herceptin, just  chemotherapies.

I originally took 4,000mg a day of Xeloda and went through 3 cycles of 14 days on, 7 days off. Had medium Hand Foot syndrome, fingertips peeling and very sensitive and soles of feet peeling in thick strips, like a snake shedding its skin. Gross part is leaving strips of skin in bed and socks. Tweaked the dose at cycle 4 to 3,500mg a day (4 tabs in morning, 3 tabs at night) and have just started cycle 5. Tumour markers CA 15-3 are down to 20 and scans are clear for liver, lungs and brain so Xeloda is working for me. Have a bone met at L4, have Bondronat monthly for this.

My fingers and feet are still affected, think this is remaining from the first 3 cycles, they are gradually improving on the slightly lower dose. I have never had fatigue or  diarrhoea, although Oncologist insisted I have the script filled for anti-diarrhoea medication before I started the Xeloda. I laugh every time I complain of constipation to her!!! You should get a gift pack with first Xeloda prescription and lots of information. Use the Moo Goo for hands and feet every day, I got slack and ended up with Hand Foot syndrome.

Dose can be tweaked to control side effects and women in America are often put on the 7 day on, 7 day off treatment when all else fails.

Hope Xeloda treats you well, I feel great on it.

With love

Joy K

Thanks again Sam,

Hubby has already put in the script for the Xeloda.  I am thinking I will start on Friday and then that will give me a few days for things to settle down hopefully before I am back at work.  I work on Wednesdays and Fridays for about 6 hours each day.  Next year my hours will change to afternoons of only about 4 hours so if I am still on it then, it my hours may be better.  My onc mentioned that Xeloda was kinder to hair than the others, so that is okay.

I have been warned about the diarrhoea and will be ready with the imodium. I will be starting off on 500mg.

It sure is a hard slog when you don't have that treatment end date.  I really know what you mean.  It seems like such a long time that I have been playing this game.  Don't get me wrong, I am so glad to still be here with my hubby and daughters, but I also feel fed up at times, that there is no real break from it.  I wrote myself a goal list ages ago and I have achieved four of them.  I have found that my goals tend to revolve around "time" and not money.  Funny how your priorities change.

I am also thinking of having a go at acupuncture.  I've heard it is quite good for people having cancer treatments.

Take care Sam.

Tracey xx

 

I have been on xeloda since the end of June. Recently had a couple of weeks break from both xeloda and tykerb to give the body a rest as i had picked up a gastro bug going around and was pretty 'spent'. I had forgotten to mention when i 1st went on the xeloda diarrhoea was a real issue my oncologist tweaked the dose a little and we seem to have it at a managable level. Tykerb doesn't help either as i can still experience it a little when on the tykerb only. My hair is slowly growing back after the radiotherapy and we shaved it off when the scalp  started getting sore-so having xeloda doesn't mean u will definately lose ur hair again.

You may be able to flex ur work a little, maybe reduce ur hours till u know exactly how u feel, plus there is a bit of a cumulative effect with the fatigue, so i normally feel ok for the 1st few days of the fortnight, then begin to tire out easily, nanna naps come into play and then u get a week off..all about management-but when isn't it!

Sometimes i just get so 'over' having this crap constantly with no treatment end date to look forward to. It is so great to come here and support each other, get feedback and connect with others that REALLY understand what can go thru ur head and what ur body is feeling too

If i think of anything else i will let u know :)

Sam  xxx

 

Hi Amanda, I was reading it as AL's.  I am hormone positive.  Started off on Tamoxifen, then went to Femara.  After the chemo this year Iwas taking Aromasin which is an AI along with the Herceptin.  Unfortunately the nodes kept on growing while I was taking all those and the pleural thickening happened too.  I was also having the Zoladex implant once a month to stop my ovaries working.

Xgeva seems to do the same as Bondronat.  I have Bondronat by IV for my bones every six weeks.  Haven't had any problems with it.  With regards to the bones, I only have one in my sacrum.  I had radiation on it 6 years ago and 'touch wood" it has been fine since and hasn't grown much if at all.

Hope your scans are good, I will keep my fingers crossed for you.

Take care and thanks for the info and support.

Tracey xx

AI's are aromatase inhibitors - I thought you may have been hormone positive and have them as a blocker of some sort - I don't know much about them as I am hormone negative.  Have you heard of Xgeva?  I was told about it being used for bony mets today - but I don't have bony mets and again don't know a lot about it.  

Glad you are going with the Xeloda - lots have had good results with it.

I'm going pretty well - scan week this week - so guess I will "know" how i'm going disease wise then.  

Amanda x

Thanks Di,

I had all my questions answered today and I think I will go the Xeloda way.  Hubby has already taken the script and put it into the pharmacy.

I am just so glad to be able to chat to all these lovely ladies on here and get some reassurance and offer it back if I can.  It is the most support, apart from my husband and daughters, that I have had since being diagnosed. Everyone on here is just so wonderful.

Take care.

Tracey

 

Hi Belinda,  Thanks for your wishes.  I'll keep the Faslodex in mind as I have to contact my onc a week after I start the Xeloda and let him know of any side effects I am having.  One of the things that does impress me with the Xeloda is that if you  have trouble with the higher dosage, then it can be reduced.  Previously I was under the impression that if you had trouble with some of the medications, then that was it, it was wiped from the regimen.  So it is good to know that it can be done this way.

Good luck with your MMM.  I was reading up about it after I read your last post.  Sounds like you are going to be treated with a Rainbow, considering all the colors.  Let's hope there is good luck at the end of it.

Thanks for replying as yes your issues and mine are quite similar.

All the best with your treatment and I am thinking of you.

Take care.

Tracey xx

Hi Amanda, okay I am going to plead ignorance here as no-one has ever mentioned "Al's" to me so I really don't know if I have had them or not.  Basically all I will be on is the Xeloda and coversyl to keep on protecting the heart.  He prefers that I go on the Xeloda straight away.  I asked him what he meant by a break and he said the maximum would be 6 -8 weeks, so I don't think it is worth bothering with a break at the moment.  The Xeloda will be to treat the node that has grown and also to sort out the pleural thickening on my left lung.

Certainly is a weird disease.  I don't think anyone can fully understand it unless they have it and even then it is confusing. 

Hope you are going well and thank you for your wishes.

Take care.

Tracey xx. 

 

Hi Tracey

Sorry to hear it wasn't great news.  I don't have any advice I'm sorry.  It seems a little strange to me to take you off everything when there is some growth?  I guess if you have never tested Her2+ve I understand the no herceptin.  Are you on some AI's anyway?  Sam has given you some good information re Xeloda and maybe Joy will come in and let you know her experiences too.  

I would be trying to get the floaties if it were me...

Great that your other results were good!  Funny how we can be so healthy despite the floaties and other nasties! (well not so funny but a little crazy hey?)

Was your Onc leaning any particular way?

Hugs to you.

Amanda xx

Hi Tracey, sorry to hear the news wasn't all positive. Not surprised you're frustrated, but it's really good to hear that you're otherwise healthy. :)   Best wishes for your decision making, will be thinking of you.

~Di