14-12-2018 06:14 PM
Hi Nicky, thanks - although they couldn’t easily access the lymph nodes today so no biopsy was taken 🙄 doctor has referred back to the team and I wait to find out what they propose next.
This cancer doesn’t give the doctors a chance when it changes its spots along the way. I too was triple positive, so on hormone tablets until the Kadcyla started, but as I had progression before they stopped, and then the Kadcyla didn’t work, I’m guessing, that like you, everything has gone negative.
I’m glad you’ve had a stable year, and hope the scan continues to show good results in the new year. Xx
14-12-2018 12:04 PM
I do hope they can work out a plan that keeps your mets stable or, even better, shrinking. When I was on H and P I also had a hormone treatment as I was still hormone positive. It was always assumed at the time that the H and P had been the drugs that kept me stable during the time I was on them but almost certainly it was the hormone treatment that did it. Once I was on kadcyla I wasn’t on any hormone treatment and that’s when progression happened. I went for several ‘second’ opinions at The Marsden and to see if I could go onto a trial. In the end theliver mets had progressed too much in their opinion so I went onto Eribulin which did work well. I had 8 cycles and stopped only because the oncs at The Marsden thought my bone marrow may become compromised (I’d been on one type of chemo or another for a few years at that point). Earlier this year my oncologist brought up the subject of a liver resection (which had been discussed a year previously before I started on Eribulin) so I had that done in April. I am currently on a hormone treatment, fulvestrant, which has been working well since Feb this year. I’ll find out in the new year if it’s still working when I get my scan results. Eribulin reduced my liver mets to one visible on a CT and 2 very tiny ones that an MRI picked up (which had been there before on MRIs and were in fact smaller than before) All of these were removed in my resection. When a biopsy was done of the largest liver met it was found to be triple negative so no wonder kadcyla hadn’t worked neither did the hormone treatment as this was the only met that continued to grow on hormone treatment whereas all the other smaller ones shrank.
13-12-2018 06:08 PM
Hi Nicky, I have ended up only having 2 cycles of Kadcyla and in a repeat scan found it’s made no difference at all, and in fact have new sites of progression. So, similarly, I am having a biopsy to check receptors as the doctors are wondering if mets are now HER2- rather than + as my primary was.
Everything back up in the air again, and a new plan needed. Trying to take one day at a time to stop me overthinking. Xx
13-12-2018 04:56 AM
Sorry to hear about you and i wish you recover well.
We recenty had her biopsy done for Liver and the results have stated she is 2 Positive. I would be consulting another doc this saturday to have more understanding on the course of treatment to be followed.
12-12-2018 02:30 PM
Sorry to hear about your Mum.
I was in a similar situation a few years back having had chemotherapy (docetaxel) with Herceptin and Perjeta. Whilst on the chemo part of the treatment plan my liver mets shrank and responded well. They stopped responding after whilst on Perjeta and herceptin but I have since found out that the main liver met (which stopped responding to treatment) was actually not HER2+ at all and was in fact triple negative. It's a long story and I seem to be an unusual case but it might be worth suggesting a liver biopsy to your Mum's oncologist to determine whether her liver mets are in fact HER2+. If they are not they will not respond to Kadcyla (mine didn't) and in fact she may have bad side effects (as I did) having Kadcyla as it's not the right targetted treatment. I'm not sure if this helps, and will raise more questions at this point, but I just wanted to say that I had gone down that route of treatment and have since found out it wasn't right for my type of breast cancer. It is always assumed that the mets are the same receptor status as the primary site but that isnt always the case.
11-12-2018 12:24 PM
Could any of your guide me on below as i am not getting a satisfactory answer from my consulting doc.
My mother was diagnosed with Metastatic Breast cancer which has spread into her Liver and Bones. Through recent Chemo sessions her Bone mets have reduced drastically but Liver mets have shown no improvement. Her Chemo had additional drug Perjeta, which initially along with Chemo showed results but when was given individually had no result.
Now the doc has suggested to start with Kadcyla. She had her first infusion of Kadcyla last week ( 7 Dec 18), but due to so called known side effect she is not keeping well. She is experiencing nausea, head ache, body ache, loss in appetite and constipation.
I was reading though the side effects and one of the major one is that it impacts the liver functionality. Since she has Liver mets, will the drug Kadcyla be effective for her or will deteriorate her liver to more worse.
Your views would be much appreciated. Thanks in advance.
25-10-2018 11:08 PM - edited 25-10-2018 11:10 PM
Hi Butterflyfree, sorry to hear your news, and understand you feeling overwhelmed. I was diagnosed with 4 secondaries in lungs 20 sessions into my rads last year, so had my LWE and chemo to be faced with this. However, I can only say positive things about my treatment. My Onco is wonderful and insists he has a bag of tricks to keep me going. I am also in a great SBC support group in my local Maggies which keeps me laughing with all the semi tragic- comedy stories we tell each other . Some of those girls have been on the go for over 10 years. Not the hand we would have wanted to be dealt, but having been dealt it , that's the hand that needs to be played. Hard at times, I know, so I'm sending a big hug, and wishing you all the best for future treatments. 🍀💐 X
25-10-2018 09:38 AM
Oh mate I am so gutted to hear your news, there is not much I can say other than I am sure you will get loads of support from the ladies on the secondary thread.
Sending you lots of love and hugs
25-10-2018 09:21 AM
Hi Leigh, have seen your story and wish you all the best in continuing the treatment that’s working.
It’s a interesting one re surgery. I chose to have a mx, as against lx, for my peace of mind and my pathological report showed no cancer cells at all in removed tissue.
But with lymph node involvement at the outset, and a lesion on the sternum the chance of recurrence was always going to be high 🙈 a shock that it has happened so quickly for me though.
Take care xx
24-10-2018 10:52 AM
Had felt a bit of a fraud earlier in the year posting on the SBC threads having a solitary sternal lesion (diagnosed simultaneously to primary IDC and lymph node involvement Oct 2017) that reacted well to chemo. But sadly I now have properly joined the club. Follow up PET/CT scan October 2018 has shown multiple bony lesions in pelvis and collarbone, and widespread lymph nodal lesions. I hadn’t even completed 12m of Herceptin and Pertuzamab. 4x EC, 4x Docetaxol, Mx, SNB, 15x radiotherapy, Letrozole and 16 H&P.
I am gutted, and having spent the past 2 weeks telling all who needed to know, am now feeling completely overwhelmed.
I start TDM1 (Kadcyla) tomorrow, 3 weekly with Zometa.
This forum was a lifeline to me last time going through treatment, but I am wary of posting on the chemo thread this time for fear of upsetting any of the new primary ladies, so thought this was a better place to start.
Thank you for listening.