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"Living with metastatic breast cancer" has a new group leader
Cosette
Member Posts: 612 ✭
Although this part of the forum is open to anyone affected by metastatic breast cancer, including diagnosed women and men as well as family and friends of those diagnosed, we also have a private group for people living metastatic breast cancer. The group was led by that wonderful turtle-heart @Pink66 who passed away in January. This week @pacwood volunteered to lead the group. Many thanks to @pacwood. Let's give her a warm welcome.
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Thanks @Cosette_BCNA - I have just sent a little welcome message to our leader
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Thank you for the warm welcome! I hope I can fulfull the role, I have big shoes to fill with the passing of Sharron. So as pink66 would say, big turtle hugs to you all. And much love and support. I have been a little absent in here but promise to check in more often! xx
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@pacwood I am sure you will be exactly what is needed, I am not a member of the group but whenever you post on any discussion I see you are ever helpful and encouraging.
Hugs at you and energy to deal with the hurdles of life.
Alice
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Glad to hear you are taking up the challenge much appreciated from this member I am not on the site a lot but love having the connection1
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So I promised a little story about myself, here goes. (apologies that it isn't little!!!!)
I was first diagnosed with BC in 2011. I found a lump myself in the shower. As a 34 year old mum of 3, I casually booked a doctors appointment to have it checked. During the ultrasound the tech found my lump and a second lump. 2 core samples and fast forward a week, my GP spoke those few words, "I'm sorry but you have breast cancer". I was diagnosed with triple negative BC.
Mastectomy, chemotherapy, radiotherapy, breast reconstruction. It was a tough time with a young family. But I dealt with it and got back into life!
Fast forward to 2015, life was pretty awesome. Great husband, 3 awesome kids, fantastic job and I was living my life! I was experiencing some back pain which I was having chiropractic care for. I really though it was just a rib muscle out, and so did he. I was fit and healthy and had recently participated in my first 10km fun run! When the chiro care wasn't doing anything I went back to my GP who requested a bone scan. A week later she called me asking to see me ASAP. That cold fear returned. I went straight from work at 5pm to my GP's office. Again I heard those words, "I'm so sorry it's cancer".
That night I learned my BC had metastasized and I had a reoccurrence in my spine. I cried, and cried some more when I got home to my husband.
I was referred back to my radiologist who sent me to Melbourne for steriotactic rads to my T8. It was after this treatment that we learned I had extensive boney mets. Which meant I was sent back to my oncologist. This was a horrible time as we thought we were dealing with ONE met not MULTIPLE mets.
My onc wanted best treatment options for me so referrred me to a breast cancer trials professor at Peter Mac. Here I signed up for an immunotherapy drug trial at PM. For the next 6 months I travelled the 400km round trip to PM for treatment every week. My anxiety levels increased! Under the trial I learned I was dealing with numerous boney mets and multiple liver mets. Early on I had a port inserted (thanks to previous chemo causing grief to my veins!), and I also had a bone biopsy from my hip (never want to experience that again. Had my poor bare ass exposed to the world!). Even with chemo and the trial drug (blinded trial, however I had an infusion reaction so we were confident I was getting the real deal!) I had progression.
The trial allowed me to have tumor sampling done in the USA. So I sucked it up and had multiple samples taken from my liver. Again not the most pleasant experience but staff and my dad helped me get through.
I was booted off trial. With much love and support from my professor (who I still see) and my trial nurse. Unfortunately due to disease progression and learning (through the liver biopsy) that my disease had morphed from triple negative BC to hormone + disease! The trial was specifically for triple neg BC.
I was in shock! I went from a woman who was triple neg to hormone +. My professor immediately ordered a zoladex implant and a new chemotherapy regime.
Fast forward to 2017!!!!! I have been in continuous treatment since 2015. But since leaving the clinical trial, I have had chemo in my home town which is awesome. I live in country Victoria and our local hospital is amazing. I just love the chemo ward girls!
With a chemo regime of carboplatin/gemcitobine and zolodex implants and zometa infusions, my latest scans indicate that boney mets are stable, and liver mets are decreasing hugely!!
So that is me in a nutshell, medically.!
Outside of my breast cancer Im a mum to 3 boys who are 9,12 and 14. My time is consumed getting kids to and from their sporting commitments. My eldest shoots clay targets competitively with school and on weekends. My middle boy is passionate about basketball and AFL! He plays all over Victoria with basketball! My baby is a free spirit who just goes with the flow!
My husband made a life change last year and we are currently managing a large dairy farm. We live life to the fullest, and my disease is NOT an excuse in life.
xx Christie.
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Thanks for sharing your story. Yes live live to the fullest and I love your words my disease is not an excuse in life x0
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Wow Christie, you sure have had some ups and downs - particularly with your cancer morphing from hormone -ve to +ve during the clinical trial. (But a bit of a silver lining that you can now have your treatment at your local hospital!) Great that things are stable/improved at the moment and you are enjoying your busy rural lifestyle.0
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Thanks for sharing your story. I love how with all the ups and downs, you stay positive and live life to the fullest. You are awesome x0
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Hi Pacwood, It's been a long time since I visited the forum and was sop saddened to here of Sharrons passing. It is wonderful that you are able to step into those big shoes which i am sure you will fill admirably.
I too live in Gippsland (Traralgon) and regularly visit our wonderful Cancer Hospital. I was dx with mets to the bone late 2014. So far have been able to hold it to the bones with AI's and Xgeva bi monthly. It is progressing but slowly. I really hope that we get the Ibrance on the PBS sooner rather than later as it would benefit myself and many HER2- people.
My cancer morphed from Lobular to Ductal also from primary to secondary. My onc thought it was strange but doesn't really make much difference to treatment options.
I was also considered for a trial at Peter Mac about a year ago but didn't fit the criteria unfortunately.
Hope you are having fun with those lovely mooies of yours.
Maybe we will meet sometime in that pleasant waiting room in Gippsland.1 -
Hi @pacwood - thanks for your story - little or not it is always amazing to see how others have faced their diagnosis and how the trials and tribulations of diagnosis, treatment and the incredible way that many have refused to allow bc to define them.
Christie, you are the epitome of that and having 2 teenage boys myself I can only imagine how full your life must be however I find that it is the craziness of everyday family life that keeps us grounded and inspires us to live life to the full.
Best wishes Sheryl xxx0 -
Thanks @pacwood for being our new group leader. Thanks also for sharing your story.
I've started this journey at the end of august last year. Being diagnosed with stage 4 straight up was a bit overwhelming.
I'm grateful for this group. It was here that I also found a couple of wonderful women in my area.
Next part of my journey is a couple of surgeries ( femur nail & hysterectomy) 10 weeks off work is going to be a new experience:)
kind regards
anne
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Girls l was realy enlightened in meeting ladies at the summit with metastisis l must say l have a much better understanding thanks girls. Especialy for us that dont have it l think its really importanr. Adean0
