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Old 12-03-2019, 07:42 PM   #9
Bunty
Senior Member
 
Join Date: Jul 2011
Location: Sydney, Australia
Posts: 473
Re: Looking for hope

Hi Valley Girl! I feel your anxiety, but as SoCalGirl writes, there are some new drugs on their way to us HER2 metsters. I've just passed 12 years Stage 4, and December is my cancerversary - 19 years since first diagnosis. I've had a lot of treatment at Stage 4, and sometimes it's been a roller coaster, with hiccups along the way.

In a nutshell, Herceptin since Stage 4 for about 10 years, with quite a bit of chemo during the early Stage 4 years, e.g., Taxol, Abraxane. I had to stop Herceptin (subcut) because of low EF, so have been seeing cardiologist for the past 18 months, and on beta blockers and ACE inhibitor with much success - EF sits at about 65%. When this all stabilised I stared Kadcyla, and continue with that. However, I also have had local intervention prior to Kadclya, such as liver resection of a large met, SBRT on lung met, and on a very large lymph node in my abdomen which caused all sorts of problems (the node not the treatment as such). It had crushed my liver bile duct so have had a few stents inserted and replaced, but now all good again (although the radiation treatment caused a duodenal ulcer to develop, which is managed by meds). I do have a few small mets in my lungs and liver, but they are stable with the Kadcyla, however, 8 weeks ago a 12mm brain met in the cerebellum was treated with SRS, and then on the review MRI last week a 4mm brain met in the right temporal lobe was detected, and treated on Monday this week with SRS. At the end of last year, and it's still a bit of a mystery, I was very sick and nearly kicked the bucket with pericarditis, and cardiac tamponade. But it seems not to have been related to the cancer or treatment, but maybe because our bodies do take some battering with all that it endures? (I was struck down with pneumonia 3 months before, so perhaps that also contributed?)

What I'm hoping to convey is that perhaps the disease progresses and presents in new places the longer on Stage 4, but there are still options such as trials, and local interventions, such as surgery and targeted radiation - and we are watched closely for any changes. When I first was diagnosed Stage 4, doctors were quite reluctant to even consider local interventions, but with longer survival rates, I have found this attitude much changed.

To be honest I do feel sometimes like it's catching up with me, but then hope returns. I still lead quite an active life, just back from a lovely holiday (sporting an injury from falling on a dance floor from too vigorous dancing, and maybe a few glasses of wine!!), and heading off again next week for another week away. I like to find joy where I can, and I give much thanks for being watched over by my medical team, and maybe a higher being??

And of course, we are all here for each other, and this site has inspired and educated me beyond belief.

Best wishes, Marie
__________________
dx Dec 2000 dcis 2.5cm clear sentinel node, ER/PR- Her-2+
lumpectomy, 6 cycles AC, 6 weeks rads
October 2007 three x 2.5cm lung mets. 8 months Taxol, started Herceptin and continue. Significant reduction in lung mets.
June 2011 3cm x 4cm liver tumour. Started Abraxane and continue with Herceptin.
November 2011. Finished with Abraxane, continue with just Herceptin. Liver tumour now reduced to 15mm x 12mm. Lung tumour now 10mm x 0.5mm
February 2012. Scans show everything stable, and brain scan clear.
July 2012. PET/CT scans show I'm in remission - no active cancer!
]Dec CT brain cllear, lungs stable, liver tumour has increased to 20mm. PET scans showed active liver met and active lung thinglet, and possible bone met.
Jan 2013 recommence Abraxane, continue with Herceptin.
June 2013 finish Cycle 6 Abraxane, continue with Herceptin. 30% reduction in liver tumour, everything stable.
December 2013. CA15-3 on rise.
February 2014. PET and CT scans show single liver tumour has increased to 35mm. No other activity.
March 2014. Planned for SBRT for liver met, but couldn't have treatment as tumour too close to bowel. Continue Herceptin.
April 2014. Surgeon advises that I am a good candidate for liver resection, so will have operation early May (after camping holiday). Tumour now 44mm x 29mm.
May 7, 2014. Two liver tumours surgically removed. Third of liver removed, and gall bladder. Am I NED?May 2014. Pathology of tumour shows it's now ER+ (95% staining).
June 2014. CA15-3 has decreased to 18 from a pre-surgery reading of 59!
June 2014. Started Femara, continue with Herceptin.
July 2014. Stop Femara due to severe Osteoporosis. Commence Tamoxifen, continue Herceptin. Waiting to hear if I can have Aclasta infusion.
August 2014. CA15-3 has decreased further to 12 - YAY!
October 2014. Aclasta infusion for Osteoporosis. November 2014, CA15-3 decreased to 11. Scans of liver all clear, something new showing up on lung, but just watching at the moment.
November 2015. Started SBRT on solitary lung met.
November 2015. Bone density scan showed very good improvement so back on Femara - yay!
December 2016. 6 treatments of SBRT radiation on lung. Seems to have had some effect.
June 2016. CA15-3 still stable and low at 9.
June 2016. Started subcutaneous Herceptin replacing infusion.
Jan 2017. LVEF dropped to 46%. Stopped Herceptin.
Feb 2017. Started ACE Inhibitor and BETA Blocker. Still off Herceptin.
Aug 2017. Two new mets - Portacaval lymph node and mediastinal lymph node.
Aug 2017. Blood tests show extremely elevated liver enzyme levels. Many tests to investigate.
Sept 2017. Portacaval lymph node blocking liver bile duct causing liver enzyme and Bilirubin problems.
Oct 2017. 8cm stent inserted into liver bile duct. Procedure caused pancreatitis, and hospitalised for 3 days. Liver enzymes improving rapidly.
Nov 2017. Commenced 4 weeks of radiation on Portacaval lymph node. 5 week break before chemo.
Jan 2018. CT scan. 11 new small liver mets, and new superclavical lymph node med.
Jan 2018. Start Kadcyla. CA15-3 426.
Apr 2018. First scans since starting Kadcyla. All tumours reducing. CA15-3 dropped to 30 from 426.
Dec 2019. Still on Kadcyla, but two small brain mets have been treated in the past month with SRS. CA15-3 stable for 12 months at 11.
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