On 22nd March, I had to call an ambulance to take me to hospital as I was having breathing difficulties. Whilst at the hospital I had various scans done. Unfortunately, my bone scan now shows that the disease has spread to two of my left ribs and one of my right rib and there is a small infusion in the right lung.
I was diagnosed with secondary bc in April 08 in the left lung and spine. January 09 showed that Xeloda had stablised it but now that is not the case.
Yesterday was my first day back to work and I was fine but today I can’t explain it I am very low the slightest things sets me off crying.
I have a meeting with my onc team on 16th where they are going to change my chemo.
I am just afraid I am the losing the battle!! I am normally strong about things but I don’t know what is wrong with me today it is all doom and gloom.
Hi Marcie,
If you need someone to talk to, the helpline are open until 5pm today, they’re here to support you. Give them a call.
0808 800 6000 (calls free)
Take care,
Jo, Facilitator
Dear Marcie,
I wish I could say something that would help. All I can say is that like many othere here, I understand how you feel. My heart sank when I had progression after being stable.
I’m not surprised you feel tearful at work. Take care and if it would help and if you can, take some more time off. Hope you find some comfort here.
Very best wishes
Anne x
Hi Marcie,
sorry xeloda has stopped working for you, I was on it for almost 2 years and then my liver tumours worked out how to outsmart it.
You will understandably be feeling down, we all do when a chemo stops and we have to change treatment. Have you done taxol yet? I did 12 last Jan/May and then had to go back on it in November last year until 3 weeks ago. I am going to have a break to let my body recover from all the nerve damage, plus the shattered immune system.
Sorry I cant be much help as I don’t know which chemos you have done, but there will be more out there that you can have, so fingers crossed you will be able to buy more time.
Thinking of you.
Love Debsxxx
Today is a very good day. I am coughing less and less. I feel better in myself and dealing with things better now.
Happy Easter all and thank you for your support.
I met with my onc yesterday and they have decided to keep me on Xeloda which I agree. I felt that from January I was having problems with the painkiller meds given to me and I felt that it caused a problem. It was my first time yesterday. I am on Zometa as my bone scan shows I have the disease in my shoulder, spine and some ribs. Is anyone else on Zometa?
I am still coughing which is getting me down at times.
I am back at work so it takes my mind off things.
Hi Marcie, I am on xeloda and zometa too. I have had some progression while on zometa but I think it has been less than I would have had without it. Evidence does show that zometa can slow down or halt the incidence of bone mets.
Initially I was on zometa every four weeks. But then I changed it to fit in with my chemo schedule (I was on taxotere last year) and so started having zometa every three weeks. I have now been on a three weekly schedule for the last twelve monts. I think this three weekly schedule has helped to keep things in my bones more stable. Certainly there have been no more mets appearing since I started the three weekly zometa.
There is a trial going on at the moment where the frequency of zometa is adjusted depending on how active your bone mets are. They do a simple urine test to determine what the frequency of dose should be. Some people, as a result, are having zometa every two weeks. Others are having it as infrequently as every two months. This is obvioulsy based on the assumption that some people will need zometa more often than others.
It may be worth talking to your team about adjusting your zometa schedule to see whether that stops any further progression for you while the xeloda works on halting the spread or progression of metastatic disease in other areas.
You might want to check with your hospital to see whether they are taking part in this trial. You can find more details of the trial on the Cancer Resarch UK web site, in the trials section.
Deirdre
Thank you for your e-mail.
Have you experienced pins and needles in your feet. I went through the pain over the weekend as I told this would happen on Zometa then it would settle down, but it does not make it any easier.
I have a “large left encysted plueral collection. This is causing compression and narrowing of the trachea adajcent to this, though the airway remains patent”.
I think this is what is causing my coughing and it is certainly causing my pain. I had no sleep last night as I was in agony. I am at work but just about functioning.
I will keep you updated how I get on with Xeloda and Zometa.
Thanks again.
Hi Marcie,
I am on Zometa because of mets to spine and now my Onc wants me to have another bone scan because I’ve got so much pain in my shoulder blade that isn’t being relieved with pain killers that she thinks I could have spread to shoulder blade or arm bones.I hope not!!
I have also been on Xeloda in the past and it worked wonders for me-shrunk lymph and lung tumours to nothing and liver tumours are smaller.Due to have CT scan to check on these soon.
Alli x