ChoccieMuffin,
Took your advice and asked today - turns out we’re ER/PR negative, so won’t be able to use Tamoxifen or similar.
Not sure if HER2 positive and ER/PR negative is a good position to be in after a secondary diagnosis - anyone else out there in the same position ???
The Herceptin/Taxol combo seems to be working quite well though. Don’t fully understand all the liver function tests they’re doing, but one of the results has already come down from 700+ to 75 (normal is apparently 45). This is only after x1 Herceptin and x3 Taxol. They seemed very happy, even surprised by this
I’m the opposite to your wife in that I’m strongly ER++ and HER2 negative, but there are lots and lots of ladies on these boards who have done well with various mets for years whilst on either just Herceptin or Herceptin in conjunction with some other treatment. Sometimes I think it’s a really good thing to be HER2 positive as it’s such a good drug. I hope it works well for years and years for your wife.
With regard to the liver function tests, I don’t really understand them all either but that sounds like a hell of a drop and I’m not surprised the medics are pleased with it!! As I understand it, there are four components to the LFT - three of mine were wildly out of range prior to starting Taxotere in September, now I have three out of four ‘normal’ results and one which is 98 where it should be between 35 and 95. Not going to worry too much about that!! It all sounds promising to me
Just to update, the 3rd biopsy found DCIS in the breast, but no primary cancer. Apparently we have an ‘occult’ cancer, which seems to mean that they know it’s there, but they can’t find it.
Just to give a bit more detail on the ER. Apparently it is/was ER +ve in the breast, but by the time it has got to the liver it has morphed into ER -ve. In our situation, we need to consider ourselves as ER -ve.
Guess this shows that ER status can change…
Maybe this is something other people might be interested in ?
Or ask their Consultant about ?
The Herceptin/Taxol combo still seems to be working well. Thankfully, the liver function tests are all still going in the right direction. We’re starting to get more side-effects now, but they’re easier to cope with if you can see the benefits…
1st scan since diagnosis scheduled for mid-January - that should give us a better idea on how much progress has been made.
Impressive reduction in tumour markers I am not surprised medical staff seem pleased as TM’s are indicating that the treatment is working very well. My consultant told me that people who respond well to initial treatment achieve better outcomes.
I think I read somewhere that about 30% of secondaries have a different histology from the primary.
The blood results show a remarkable improvement in the various liver function tests and tumour markers so everyone is very happy. Unfortunately the level of numbness in the hands/feet has become a significant concern, so the Taxol has now been stopped after 9 doses. The Herceptin will continue.
We’ve also had a scan, which confirmed the reduction in the tumour, but shows an increased swelling of the liver - apparently we’ve got ‘pseudo’ cysts which are quite unusual, but not malignant. They’re causing quite a bit of pain though, especially after eating. The situation will be discussed at the next MDT.
Does anyone else have experience of dealing with ‘pseudo’ cysts ?
Any advice would be appreciated
Some great news there, NB, very glad the markers etc are so improved. I can’t add anything useful about tax (I was lucky not to have any) but I know peripheral neuropathy isn’t rare. If you’re looking for a bit of silver lining, then I would hope she begins to feel a bit better with the break from tax. I suppose they might consider some of the other chemos, but I’m not her onc so I’d only be wondering.
Best of luck to the two of you and I’m sure people with something more useful to say will be along soon. Just wanted to wish you well.
I went onto Paclitaxol in Nov when Docetaxol caused a severe reaction.
I already have Carpal Tunnel Syndrome in my hands, and after only 4 doses of Pax I noticed numbness in my toes. The Pax was instantly stopped and I went back onto FEC to finish my course of chemo.
2 months after dropping the Pax I can still feel the numbnesss in my toes, have been told it might never go away fully.
Good Luck and best wishes to your wife. With the support you are giving her I am sure she will cope well with this journey. My husband gave up his job to look after me and I feel priveledged to have his support. (we foster and I was hospitalised 3 times last year with infections and low Neutrophils so we would have lost our foster child otherwise)
An excellent response to treatment. Both of you must be very pleased. My TM’s continued to drop after chemo had finished. I put this down to the herceptin and tamoxifen.
I had pins and needles in toes and fingers whilst on chemo. It got better after chemo had finished. I still get pins and needles in cold weather.
Well, nearly a year on from the initial diagnosis, so thought I’d give a quick update…
The liver tumours have been fairly stable for the majority of the time on 3 weekly Herceptin. The main issue has been with severe joint pains. Still not sure whether these are a hang over from the chemo (unlikely), a side-effect of the Herceptin (possible) or early onset Rheumatoid Arthritis brought on be having chemo (possible).
The treatment for the joint pains has been courses of Steroids which calm down the joint pains, but induce terrible constipation, which then needs a lot of attention and maximum doses of gunpowder to get moving. We’ve also been referred to the Rheumatism Clinic for lots of tests, but this has yet to reach a conclusion.
Anyway, recent events have somewhat overtaken this, as one of the nurses noticed some slight confusion in my wife a couple of weeks ago. I’d put it down to upset/trauma as her sister has now also been diagnosed with Breast Cancer. Anyway, a brain scan was arranged, which found that my wife has developed 2 brain mets… Not good.
Thus she’s booked in for a course of SRS, starting soon - does anyone have any experience of this ?
I’m a bit loathed to google - thought I might get a more balanced view on here…, but suspect the prognosis isn’t likely to be great.
