My name is Wendy, and I was diaognosed with breast cancer 16yrs ago. Life has been good to me since that time. I have been lucky to see my 3 granchildren born and spend precious time with them. Early last year I had an x-ray for a painful back . This was followed by many scans etc. and I was diaognosed with secondary breast cancer in the spine, pelvis, ribs. I guess I was lucky no organs were affected. I have had chemo & radition treatment and my cancer had stayed stable for 9 months and now has decided to be on the move again. I am commencing chemo in tablet form this week. I would love to talk with someone who is going through similar circumstances as I dont know any one else who has secondary breast in there bones.

Dear Wendy, I am sorry you have had to join our group, but you should find valuable support and information here. There are many women on this forum with secondary breast cancer, and mets in the bones seem the most common. I had a similar diagnosis in February 2012, but had some spread to the liver soon after. I have had chemo and am now on Herceptin, Tamoxifen and Denosumab - reasonably easy to tolerate and still keeping me stable. The key message is that everybody is different and there are many different types of treatment available. I hope the new chemo (Xeloda?) works well and gives you another long period of stability. Best wishes..... Pam

I was glad to recieve your reply. I was feeling a bit Isolated in not knowing any other person with mets in the bones. I have a friend who was going through chemo at the same time as I was, for breast cancer she was full of confidence and was sure her cancer would never return. I really hope for her sake it never does. I was having chemo for secondary breast cancer and found it hard to talk to her as to how I was feeling. I didnt want to scare her or shake her confidence. I feel that I have come to acceptance now of my cancer, but have decided to get on living my life to the best I can & enjoy myself. My husband & I recently went to Cairns for a holiday during winter. We had a great time & I felt really well. It was a bit disapointing when I returned to my oncologist to find out after several scans that the cancer was on the move again. Today I am starting my chemo tabs Xeloda & hopefully I will get back to being stable again. Well the sun is shining the birds are singing I think I will go out side & help my husband in the garden. I'm not ready to fall off my perch just yet. Wendy

recently visited my oncologist, and her news was that I may have to stay on Xeloda chemo tabs. indefinately. Guess it is better than some of the other chemo treatments that I have had in the past. Can go off the treatment for a short break if I want to go on holidays. Is there anyone out there on the same treatment?

Hi Wendy I was diagnosed with secondaries right from the start (Dec 2010). I was 40 years old. The mets are in many of my bones and last year it progressed to my liver. My oncologist is looking to change my treatment (again!) as my tumour makers were up and will confirm this once we have my next lot of scans next week. He did mention Xeloda as a chemo option for me. Hope you cope OK with it all. You are definitely not alone! Amy

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12 Replies

wendy_h67
Member
11 years ago
Hi Beery,

Hope Xeloda is going well for you. I am only on Exemestane now & have been on it since Dec. Having good results. Tumor markers have come way down & bone scan stable. I do get breathless on exertion more so lately & will mention next onc. appointment. Wendy h 67
Beery
Member
11 years ago
Hi Wendy, I've just completed my second cycle on Xeloda. So far have experienced extreme breathlessness on exertion (like taking my usual walk) also, a little hot/burning feet and a cough. See onc again next Tuesday for followup, have Xgeva injection and port-a-cath flush. I was so glad to hear that your treatment with Xeloda lasted 15 months and there is a possibility of future treatment again. It gives me a whole new outlook with this drug, I hope I have the same result. My mets are that same as yours, but I also have mets on the neck of femur (hip/leg connection). Was previously on Exemestane but experienced side effects. Tried a few other hormone treatments and afinitor, before being put on IV chemo (EC) as bone cancer had shown further progression. Look forward to exchanging info on our treatment regime. Sue:)
wendy_h67
Member
11 years ago
Hi Beery, I have just had my third anniversary of living with secondary breast cancer. My cancer is in the bones- Spine,neck,skull,ribs, pelvis & tail bone. I started my treatment with radiation treatment as the cancer was pressing on my spinal cord. After I had Iv Abraxane, followed by Xeloda. which I was on for 15 months. It really wasn't too bad except for feet & hands problems. Towards the end of each cycle I had burning pain & cracked skin on feet & hands. Moo Goo cream I found was the best thing but tried other creams as well. One good thing it kept my cancer stable. Had to watch my diet as diarrohea can be a problem. My tumour markers didn't change much so I'm now on Exemestane only. Due for scans this month & a visit to my onc. who I haven't seen since Jan. I may have to go back on Xeloda at some stage. Recently I have been getting dizzy turns which I hope is only positional vertigo as told by my GP.I guess when I have the scans all will be reveilled.

Best wishes Wendy
Beery
Member
11 years ago
Hi Wendy. Thank you for accepting me. I too have secondaries to bone with non further progression to soft tissue, yet!. Cancer found in L3 of spine but progressed further along spine, ribs, neck,brain, hips and fermur neck bones. Had hormone treatment, evermolus, (afinitor), radiation to pelvic area where initial secondaries found. Now been put on Xeloda....well I was on it for a couple of days until I developed a chest infection. Now recovering from it, taken off Xeloda for time being. Still have to have heart echo before appointment with my onc. My thyroid apparently has decided to play up as well..Bloods appear OK according to onc but I still have to have thyroid scan yet. I'm a little sceptical now, and sick and tired of being sick and tired all the time. I have officially retired now, can't see myself going back to work full time now, which has upset my plans. In would love to hear your story especially your recent one while on Xeloda. I realise we all react differently to meds. I assume In will be put back on Xeloda once everything has settled. Looking forward to hearing from you.Sue:-)
Pamelamary
Member
12 years ago
Sorry to hear that, Wendy. But at least there are many other options. I hope you soon work out a new treatment plan, without the nasty side-effects.

Best wishes.... Pam
wendy_h67
Member
12 years ago
Hi all

Have been on Xeloda now for 6 months and it looks like I will be changeing treatment because of side effects. My oncologist said there is plenty of treatment available but it will probably be I.V.

Not looking forward to that , but I if it keeps us alive I should'nt complain.

Just waiting to see what happens after the next bone scan in april.

I'm still enjoying life, lots of special times with my little grandchildren.

Wendy
wendy_h67
Member
12 years ago
Thank you for your reply,

I was diagnosed with secondaries in March 2011. The mets are in my spine neck ribs skull & hip bone. When I do a Job I do it well. The cancer stayed stable for 9 months during which time we had a lovely holiday in Cairns during the winter. On return from hols. I had a blood test & my tumour markers had risen again.After scans it showed a couple of more small tumours. I am now on Xeloda which has caused some feet problems but I am coping with it., especially when my oncologist tells me my tumour markers are starting to come down. I feel I am coping ok with the love and support of family & friends My little grand children make my day.

Hope you are ok Enjoy Christmas

Wendy
Amy
Member
12 years ago
Hi Wendy

I was diagnosed with secondaries right from the start (Dec 2010). I was 40 years old. The mets are in many of my bones and last year it progressed to my liver. My oncologist is looking to change my treatment (again!) as my tumour makers were up and will confirm this once we have my next lot of scans next week. He did mention Xeloda as a chemo option for me.

Hope you cope OK with it all. You are definitely not alone!

Amy
wendy_h67
Member
12 years ago
recently visited my oncologist, and her news was that I may have to stay on Xeloda chemo tabs. indefinately. Guess it is better than some of the other chemo treatments that I have had in the past. Can go off the treatment for a short break if I want to go on holidays. Is there anyone out there on the same treatment?
wendy_h67
Member
12 years ago
recently visited my oncologist, and her news was that I may have to stay on Xeloda chemo tabs. indefinately. Guess it is better than some of the other chemo treatments that I have had in the past. Can go off the treatment for a short break if I want to go on holidays. Is there anyone out there on the same treatment?