Forum Discussion
My first post
Hi everyone, this is my first time to reach out to anyone out there who maybe able to help me. I was diagnosed with breast cancer in May 2010. Had mastectomy, chemo, radiotherapy. In March thru to April 2011 had a failed attemped at breast reconstruction.
In October 2012 I was diagnosed with secondary breast cancer in the liver and bones. After ct scans and various other tests revealed both had spread extensively thru my body. I have had xeloda, navelbine, denosamab injected every month.
Over the past year my bone cancer has been the worst. If not for it I would be quite well and life would have stayed somewhat normal. Unfortunately, I no longer drive the car , I walk with a walker, and need care to dress, get in and out of bed etc. The plus is that I try to greet everyday with a smile and I remind myself of the things I can do rather than what I can't.
My carer is my wonderful hudband. He now works 3 to 4 days a week. We have had an enormous roller coaster ride since my first diagnosis. I have my pain managed but find I have to rest most of the day and fear this will worsen. I am almost at the end of my tether.
I saw my oncologist last week and I had to make the decision to go on more intravenous chemo, more ct scans , blood tests, maybe a bone marrow biopsy, or to let things take their course.I have chosen to go ahead another time.
I hope I am strong enough. Is anyone out there a bit like me and can you suggest maybe some pain relief you have found helpful.
Looking forward to hearing from someone out there.
Kind regards, Denise
14 Replies
Hi DeniseP, if you are on 3wkly treatment, you will be up to your second dose of Caelyx (also called doxorubicin or Adriamycin)now, and may have more answers etc that you had at time of your first blog. But I wanted to supply you with a couple of links I thought you might find helpful.
First, about caelyx:
What liposomal doxorubicin is:Liposomal doxorubicin is the chemical name for the chemotherapy drug. It is also called by the brand names Caelyx, Myocet or Doxil. Doctors use it to treat some types of cancer, including breast cancer, ovarian cancer, multiple myeloma and a type of sarcoma called Kaposi’s sarcoma.This drug contains the chemotherapy drug doxorubicin (Adriamycin) wrapped up in a fatty covering called a liposome. This allows the doxorubicin to stay in the bloodstream longer, so that more of the drug reaches the cancer cells. It has fewer side effects on healthy cells than regular doxorubicin, because the fatty covering acts as a barrier.
Second, about support for Stage 4 breast cancer patients, which I recently discovered is something those of us who are not Stage 4 cannot properly provide, even though we care deeply and really do our best to understand and to be with you.:
There are 3 groups I have come across that are made up of people in Stage 4, and thus more likely to know answers etc.
1)The first is PYNKS advanced if your are in WA, a professionally run group with excellent guests and kind, lovely members:
2)The second is on the US site breastcancer.org Stage 4 group, I will give you the link for people with bone mets. This Stage 4 group seem to mostly be a really close and supportive group which may be what you are looking for :
https://community.breastcancer.org/forum/8/topic/789492
3)The third is the US HER2 cancer support organisation, who are lovely and have a great forum of kind, intelligent, supportive cancer patients with a lot of info about research, and personal experience.
4) The fourth item is a booklet for metastatic breast cancer patients written by metastatic breast cancer patients on HER2.org that may answer your questions in a helpful way.
http://her2support.org/images/phocadownload/BreastCancer_101/Metastatic.pdf
I hope you are travelling well, and finding success at dealing with the pain and the other unpleasant realities of life.
Thanks so much Tonya, your lovely words are much appreciated, you keep smiling too. Xxx
