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
Comments
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Now you are on the main page:) I am sure that ladies with a similar diagnosis to you will reply to your post very soon Denise.The online network is an amazing place as I am sure you are about to find out! Cheers xoxRobyn0
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so sorry to read your story, why am I reading it because I too have cancer and waiting for results tomorrow from double mastectomy and nearly all lemph nodes out under left arm. I fear the worst but who knows. It's the worst time in anyones life 'waiting waiting waiting". Keep positive and hug those very close to you.
hugs
Sarah54
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so sorry to read your story, why am I reading it because I too have cancer and waiting for results tomorrow from double mastectomy and nearly all lemph nodes out under left arm. I fear the worst but who knows. It's the worst time in anyones life 'waiting waiting waiting". Keep positive and hug those very close to you.
hugs
Sarah54
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so sorry to read your story, why am I reading it because I too have cancer and waiting for results tomorrow from double mastectomy and nearly all lemph nodes out under left arm. I fear the worst but who knows. It's the worst time in anyones life 'waiting waiting waiting". Keep positive and hug those very close to you.
hugs
Sarah54
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Hi denisep,
Glad you have made a blog post and thank you for sharing your story with us.
There is an online group for Women Living with Advanced Breast cancer that you might be interested in. You can find it here: http://www.bcna.org.au/group/4218.You could also use the site's search function to find others posting about advanced or secondary breast cancer, brain mets (see above the main navigation bar where it says "start your search here" -- when the results page comes up, if you look at the right side of the page, you'll see if each result is a blog post, page, group, etc.).
Hope that helps a little-- if you need a hand with finding your way around let me know.
Jess x0 -
Hi Denise,
Like you, I was rediagnosed in 2012 with mets in the liver and bones, so I can truly sympathise with your situation. However, we are all so different - being her2+ and ER+, I am being treated with Herceptin, Tamoxifen and Denosumab, and I am living quite well at the moment. My aches and pains are manageable, and I try to avoid too much medication.
I know there are other women on this site who may be able to give you more feedback in regard to pain relief, but remember your doctors should be able to help. Some women find Pall care very helpful with getting the pain under control.
You sound a brave woman and lucky to have such a devoted husband. I send you warm wishes for further successful treatment. Keep trying to greet each day with a smile - I know it's not easy.
Best wishes.... Pam
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Hi Sarah
B
y now I expect you have your results. If you have, I have my fingers crossed it all went well for you.
Thankyou for replying to my blog. The response has been amazing, You all give me so much hope to keep going. Sending you lots of positivity and hugs, Denise.
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Hi Jess,
Thankyou for your info, I found it very helpful. sending you lots of hugs, Denise xxx
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Hi Pam,
I have a wonderful "pain doctor" who tries to move things around to suit me and is always looking for new medication. I dont like being on it all but as I am in so much pain I cant do without them. I am booked in this Thursday to start a new chemo called caelyx. Hoping for a little discomfort it will do the job for a while and I will have some relief from my pain. Yes I have a wonderful husband and family around me, I am a truly blessed to have them by my side.
Keep smiling, kind regards, Denise xxx
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Hi Pam,
I have a wonderful "pain doctor" who tries to move things around to suit me and is always looking for new medication. I dont like being on it all but as I am in so much pain I cant do without them. I am booked in this Thursday to start a new chemo called caelyx. Hoping for a little discomfort it will do the job for a while and I will have some relief from my pain. Yes I have a wonderful husband and family around me, I am a truly blessed to have them by my side.
Keep smiling, kind regards, Denise xxx
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Hi Robyn, thankyou for your support.
Big hug, Denise xxx
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I hope yesterday went ok for you and that you can get your pain issues resolved.I was diagnosed in April 2010 for a second time with early breast cancer.My first time was in 2003 -same breast.I consider myself lucky that it was caught early again.It saddens me to think that you were diagnosed with secondaries in 2012,two years later.How scary that must have been for you but how brave you are dealing with it.You are focusing on what you CAN do and not on what you can't.This network is a very special place and I hope you'll keep coming back for friendship and support. Big hug, Tonya xx
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Thanks so much Tonya, your lovely words are much appreciated, you keep smiling too. Xxx
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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:
rochelle.hook@bcrc-wa.com.au
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.
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