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First post.......

28 REPLIES 28
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Re: First post.......

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.
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Re: First post.......

Hi NB,

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.

Sorry don't have experience of liver cysts.

AlexD

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Re: First post.......

Hi NB,

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)

Love and << June

ChoccieMuffin
Member

Re: First post.......

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.

CM
x

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Re: First post.......

Well, things have moved on in a month....

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 🙂

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Re: First post.......

Hi Northern Bloke,

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.

I hope the scans confirm good progress.

AlexD

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Re: First post.......

Lesley, thanks for your comment & good luck too.....

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.

Onwards & upwards....

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Re: First post.......

Hi Nothern Bloke

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 🙂

Keep us posted how things are going

Lesley xx

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Re: First post.......

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 🙂

ChoccieMuffin
Member

Re: First post.......

Survive? yes. Happily? you'll find lots of posts relating to on-going side-effects.

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Re: First post.......

Filosofie,
Thanks for this information, it is very helpful. Now I understand why I keep reading about aromatase suppressors. Can the body survive happily without any estrogen at all though? I thought estrogen protected against heart disease and osteoporosis. Maybe I'll have to take other drugs to prevent these?
Mx

filosofie
Member

Re: First post.......

Mabeline, we still produce some oestrogen after menopause, but obviously not in the ovaries. Oestrogen is produced by the aromatase enzyme converting androgens to oestrogen. As I understand it (imperfectly) this goes on in various tissues around the body including fat cells.

ChoccieMuffin
Member

Re: First post.......

NB, you might find that your wife's breast care nurse can take a look at the notes for you, as I wouldn't be surprised if they have already done the oestrogen and progesterone testing and it's possible they didn't go into that much detail when they broke the news. So give her a ring tomorrow to ask.

I don't know whether it's helpful with a secondary diagnosis, but I know that for primaries it means they have other weapons they can use to attack the cancer, like Tamoxifen or aromatase inhibitors.

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Re: First post.......

Hi everyone,

On the subject of ER positive, that's what I am and I'm a bit confused. I understand it to mean that the tumour is Oestrogen receptive, i.e. it feeds on oestrogen. What I can't understand is how is my body making oestrogen when I have no ovaries (they were removed in April 2008, along with a full hysterectomy). I have heard that body fat produces oestrogen but, although I'm certainly no Miss World, I'm not that big! I know you can also get oestrogen from plants. Anyone shed any light?

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Re: First post.......

ChoccieMuffin, dawnhc, Mazzalou - thanks for your posts.

ChoccieMuffin,
When can we expect to get the diagnosis on ER ? Does it come from the breast biopsy ? We've had 3 goes at getting a biopsy so far... Try 1 (3 samples, failed), Try 2 (6 samples, failed) and we're currently waiting for the results from Try 3 (4 samples). So, on top of everything else, her breast is now extremely bruised and tender with 13 holes in it..... Is ER positive a 'good' thing in this situation ???

dawnhc,
Yes, very hopeful feedback, thanks for sharing.

Mazzalou
Member

Re: First post.......

Wow! I think that you Dawn, Blondie and Fairview J are an inspiration to all of us breast cancer ladies who are on herceptin for a year ie 18 doses. I have now had 5 and will have my 3rd MUGA scan on Monday so I will be thinking of you 3 musketeers.

I raise my glass to you and wish you all a long and healthy life, and thank goodness for herceptin.

Cheers!

dawnhc
Member

Re: First post.......

Just thought some of you might be interested that blondie, FairviewJ and myself posted on a thread 2 years ago about being on Herceptin a long time - we started in 2003/4. Blondie had just passed her 100th! and I followed her a couple of weeks later and I think FairviewJ has probably been on it longer than the two of us as she started in March 2003 I think. It is an amazing drug if it works for you. I am very sure I would not be here now if they hadn't discovered this drug.

Dawn
xx

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Re: First post.......

Hi

Wow 8 years on herceptin, now that's inspiring.

AlexD

ChoccieMuffin
Member

Re: First post.......

ER is the abbreviation used for Oestrogen (blame the yanks, they don't know how to spell!) If your wife's tumour is oestrogen positive, she'll probably be prescribed hormone therapy, either Tamoxifen if pre-menopausal or aromatase inhibitors (e.g. Arimidex), or if pre-men and Tamoxifen doesn't suit, then Zoladex to turn off her ovaries and then an aromatase inhibitor.

A few weeks ago when I was in for my Herceptin I got chatting to the lady in the seat beside me, she's been having Herceptin for secondaries for the last eight years and looked (and felt) really well and her secondaries were stable and had been for ages.

Hope that helps.

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Re: First post.......

Hi Dugsy & AlexD - thanks for your replies.

Dugsy,
My wife's on weekly Taxol too and her side effects are similar to yours. No sign of hair loss yet, but I guess that will come. I hope the outcome is as successful for us as it has been for you. We've only had x3 doses, but the blood results already seem to be going in the right direction.

AlexD,
Your situation sounds very similar. Don't know what ER is though - should I ? Good news that you managed to keep working, as my wife is the type that wants to get back into things as soon as possible. Congratulations on your 3 year milestone - I hope we'll be able to report something similar.

Thanks both for offering to be a point of contact.

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Re: First post.......

Hi northernbloke.

I am sorry to hear of your wife's diagnosis. I was diagnosed in 2008 with primary BC. 2 months after my primary diagnosis I was told that I had mets in my liver and bones. I am HER2 and ER positive. I had taxol and herceptin. I had the tax every 3 weeks. I didn't get too many side effects from the taxol and managed to keep working through most of it. I did find that the fatigue got worse after each cycle.

The tax and herceptin combo worked well for me. I have now been stable for 3 years and recently celebrated birthday number 46. I continue to have herceptin every 3 weeks and take tamoxifen. The herceptin only takes half an hour to go through and I don't have any side effects from it.

My quality of life has largely remained unchanged. I still work full time, and do all the same things that I did before diagnosis.

Receiving a secondary diagnosis is initially devastating. Despite having this diagnosis there are many of us on this site who continue to live full and active lives. You will find some truly inspiring stories on this site, i.e. women who have been living with liver mets for 8 years. It is my view that having hope has a significant impact on how we cope with this disease.

I am happy to try and answer any questions that you may have.

AlexD

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Re: First post.......

Dear Northernbloke,

My Paclitaxel or Taxol, was given weekly, rather than once every 3 weeks, as this helps to minimise the side effects. So rather than one big dose & then 2 weeks off, I had the dose split into 3 smaller doses given weekly for 3 weeks & then a week off to recover. From what I've heard it isn't given much as one single dose as it's quite a toxic chemo & would knock the socks off you for a while!! In smaller doses you can manage the side effects, although it is quite hard having it every week.

I found the main side effects to be tiredness & a yukky taste in my mouth, which both last for about 3/4 days each week. And a terrible foggy head for a couple of days after, which is a bit weird!! Also as the treatment went on I have had some problem with numbness in my fingers & toes, but it isn't too bad & will resolve once treatment finished.

The main thing about Taxol is that although having it weekly is hard work, it can also be very effective. I have bone mets, and was supposed to have 18 Taxols but as it's worked so well for me my consultant is stopping after 12 & keeping the rest in reserve for if I might need it again in the future.

Do let me know if I can be of any more help & good luck to your wife with all her treatment.

Dugsy

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Re: First post.......

Firstly, thanks Dugsy, Sarahlouise, hollymeg, mabeline & Jo for your replies - much appreciated.

Dugsy,
It would be good to hear your experience of Paclitaxel. I understand weeks 3 & 4 are the worst ?

Sarahlouise,
You seem to have started from a terrible position too - good luck with it. I think my wife's primary must be pretty small as it couldn't be felt. They had x3 failed attempts to get a sample first time, so second time they took x6 shots at it - still awaiting the results. At the moment the major concern is the liver, so I hadn't really considered that they might want to remove the breast at some point in the future. Had assumed that she was too far gone for that to make any difference. My wife's diet was pretty good already, but I'd be interested in your diet tips or links to the appropriate threads. Not sure what foods would make your body 'alkaline', although I've heard asparagus is good. As I'm doing all the cooking now, her diet might be about to get worse !

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Re: First post.......

Hi Northernbloke,

Just a very quick post as dashing out, but I'm just finishing 12 weeks of Paclitaxel if I can be of any help to you & your wife. Mine is for bone mets.

Dugsy

sarahlousie
Member

Re: First post.......

Hi Northernbloke,

So sorry to hear that you are going through this but you have found the right place for support and understanding as we are all in the same boat. I was dx with primary and secondaries mets to the lungs from the get go back in march this year, so far I have done 6 months of chemo, then surgery to remove the breast and lymph node clearance and now due to start radiotherapy also taking tamoxifen for 5 years and through all of this was on herceptin, we think the herceptin is keeping the mets on my lungs stable. So far so good, just keep carrying on with the treatment plan, I've also looked into diet/nutritional help there are a lot of books written on the subject and you might like to check out the complementary threads where they discuss this in more depth, I have changed my diet to try and make my body more alkaline and less cancer friendly, also take supplements based on my own research, basically its a steep learning curve but I think as long as you keep up with the conventional treatment plan and then add anything else you might be drawn to like diet or supps, I reckon it all helps. Please feel free to PM (private message) me. Hope this helps.
Sending you love and light Sarahlousie xxx

hollymeg
Member

Re: First post.......

Northern bloke, i too dont have any advice for you but hang in there, i know you will get all the help and support you need on here. lots of ladies will be along soon. sorry you and your wife are going through this crap, sending you both a hug x

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Re: First post.......

Hi Northern Bloke

I just wanted to say I think it's great you've come on this site for your wife. I don't have any information or anything of any use for you but I just want you to tell your wife I am sending her all my positive vibes and a big cyber hug. It really does take a while to get your head around a diagnosis and she's probably still a bit numb but in a few days things will seem different.

Jo_BCC
Member

Re: First post.......

Hi, and welcome to the Breast Cancer Care discussion forums, you've come to the right place for some good support both for yourself and your wife.

While you are waiting for other forum users to reply I have put for you below links to some of BCC's publications which you and your wife may find helpful.

Secondary BC in the liver:
http://www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-breast-cancer-liv...

In it together - for partners of people with BC:

http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/it-together-partners-people...

Secondary Resource Pack:
http://www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-resource-pack-bcc...

I hope these help. Take care,
Jo, Facilitator

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First post.......

Hello folks,

My wife has recently been diagnosed with secondary cancer in the liver. The liver biopsy revealed that the primary is in the breast.

In terms of treatment, she was immediately started on Paclitaxel.
The liver biopsy also showed that she is HER2 positive (3+), so last week she was also started on Herceptin.

We've also had a breast biopsy, but are still awaiting the results on that one.

I guess there are 101 questions, but I'll start with:

1) Has anyone else started from this position ?
2) Appreciate we're at Stage 4, but what can we expect from here ?
3) What do we need to be asking our consultant ?

Appreciate there's loads of info on here, so happy for you to point me to other threads if it's covered elsewhere.

Thanks in advance 🙂