Shouldn’t something that makes you feel this crap, actually work??

Hi all.

I have browsed the forums before, but this is my first posting… and I need some advice please.

A brief history - I was diagnosed in 2002 whilst pregnant with my only child, and aged 28. The original lump was in my armpit (so already at stage 2) and a grade 3 tumour. After I had my son, scans showed it hadn’t spread any further - when my onc said he was aiming for a cure hopes were high. I had the standard 6 cycles of chemo, a left mastectomy with axillary clearance, then radiotherapy to my collar and chest wall. I was then put on Tamoxifen for two years. However about a year later a small lump appeared in my neck (on the same side) and eventually tests showed my cancer had returned. I had several lumps by this time and the skin around the site of my surgery had started to thicken and go red and itchy, but again scans showed that although lymph nodes in my chest were affected, my organs were clear - it could have been worse.

However it was at this point I was told I could no longer be cured, but that it could be controlled, possibly for a very long time. I psyched myself up for more chemo but the expression my onc used was ‘we don’t want to use a sledgehammer to knock in a nail’. So I started a course of Zoladex and Arimidex which made me feel unwell and didn’t work. So a few moths later I started Capecitabine which was fanatastic, worked really well and with very few side effects. Herceptin, then joined the fight and this combination seemed to work really well, I wouldn’t have known I was ill and things were looking up. It went on like this for about three years; I’d have a course of capecitabine with Hercpetin, the lumps would shrink, I’d have a break in treatment, they’d return, back on the treatment…etc.

Gradually the chemo became less effective. Lumps had appeared on the ‘good’ side, in my armpit and neck (none in the breast, oddly) but severe sores on my ‘bad side’ wall, and when the herceptin damaged my heart function my onc decided it was time to stop the treatment and have a rethink. This was in early December 08. There then followed a period of six weeks where I had no treatment and during this time the cancer seemed to go crazy. The lumps in my neck and chest grew enormously and were becoming painful. Then swelling built up around the lumps and I now have what feels like a huge fused mass on my neck and jawline and spreading up the side of my face, it is painful and tender up to my temple, and unsightly and the skin in bumpy, purple-red in colour, sore and itchy.

Needless to say I couldn’t wait to start docetaxol on 12th January. My cancer had always responded really well to cancer and I took it for granted that I would notice a different straight away and it would be the answer to all my problems. However, after one dose, although it seems to have had a remarkable effect on the huge sores and lumps on my chest wall, alarmingly the huge mass on the side of my face is still growing - in fact it seems to be gaining momentum, and is becoming more and more painful.

I will see my onc (well, a registrar no doubt) tomorrow and have 2nd docetaxol, and have a scan later this week. Really don’t want to be told, ‘well lets wait and see if this dose works’ and be in pain and growing a second head for another 3 weeks!

So suppose my questions, that I hope some of your experiences may be able to answer, are:

Has anyone had similar symptoms?

How was it treated?

Did it ‘work’ (ie shrink/stop/slow down) or none of the above?!

Any answers would be greatly appreciated.

Many thanks

Hi Bex1

Really sorry to read about the progression of your cancer…the spread up the side of your face sounds particularly scary and horrible and from all I’ve read on breast cancer forums I know that what you describe is relatively unusual.

My own story has some similarities to yours though I’m much older than you (54 at diagnosis in 2003.) I had primary breast cancer with a lot of node inviolvment, had AC chmeo before surgery and then docetaxol (taxotere) after surgery. I was OK until two and half years later when in April 2007 got recurrence in nodes in neck and chest wall. Since then have had vinorelione, xeloda, carboplatin and gemzar, then taxol and now back on vinorelbine. The cancer has proegressed slowly…always speeding up when I’m off chemotherpay. As yet the cancer hasn’t broken through my skin though I am told to expect this to happen. My chest wall and neck have at times been very swollen and the skin on my chest wall and neck, red/purple with capillary marks. The cancer has damaged a nerve affecting my left eye so the eye looks ‘wonky’ (though not too noticeable as I wear glasses), and damaged my left vocal chord and hence my voice is very weak…I find this very diostressing at times.

I guess that your onc will suggest you do at least one more cycle of docetaxol as it sounds as though it has some effect on the lumps on your chest. Its a horrible chemotherapy and I agreee that its awful suffering the crap side effects when it doesn’t seem to be working as well as you hoped.

I presume from your treatments that you are her2 and er/pr+ I am triple negative so chemo have been my only treatment options. I’m pretty well at the end of my options but hoping that vinorelbine is having osme impact (my lumps seem a bit smaller and severe lymphoedema is much better). In my case chemotherapy doesn’t seem to be particularly effective and I am exhausted with it, but the cancer is spreading comparatively slowly. My major organs are OK at the moment though there is a query over ‘inflammatory changes’ in my left lung which I suspect may well turn out to be lung mets.

I do know what a lonely place it can be to have this kind of spread…there’s so little information available. You are so young, and your child is so young. What a horrible disease this is.

Hope your appointment with onc goes as well as it can. I diid get a second opinion form the Marsden last summer and may go back for the possiblility of a phase 1 trial of a PARP inhibitor. You could perhaps ask your onc about trials for tykerb which is another drug for her2+ cancer.

best wishes


Thanks for your response Jane.

Sorry to hear your situation, but thanks for your frankness. I never imagined that breast cancer could be facially disfiguring and am so sorry to hear about your eye and voice, that must be very distressing - as if you don’t have enough to contend with. Its so unfair isn’t it? Not only do we have to worry everyday what is going on inside our bodies, but its there to see when we look in the mirror everyday to! Glad to hear the Vinorilbine seems to be working, my onc initially considered this before he decided on docetaxol ‘one of the big guns’ (as he put it), Let me know how you get on and fingers crossed re your lungs.

You’re right in that my situation seems to be unusual, I’ve been trying to find out information about my symptoms, but there seems to be very little about cancer in the lymph nodes and skin on the usual sites, so its really helpful to hear of a similar situation.

I had considered the possibility of nerve damage (my ear is numb and my face has felt ever so slightly twitchy at times), and I wondered if this would be permanent. You have confimed that it will be worth asking my onc some questions about this, despite being afraid of the answers.

Feel a real ignoramus, I am Her2+ but I’m not sure what er/pr+ means, can you shed any light?

While we’re on the subject, I have done no research with regards trials and new drugs, and have so far put total faith in my onc to know whats best for me and recommend the best treatment. But am starting to wonder, now the situation is different if I should be doing more. Everyone on these forums seems so clued up - should take more responsibility for my treatment? Can you recommend any websites with information about new drugs?

Thanks so much.


Hi again

Sorry to use jargon: er and pr stand for the hormones oestrogen (er) and progesterone(pr) and I presumed your cancer was stimulated by these as you’ve been on arimidex which is used in oestrogen and progesterone positive cancers. (Mine isn’t and is also her2-…hence ‘triple negative’)

I pick up my knowledge from the internet…this site, Cancer Bacup, and bcmets which are sites from the USA. But it takes a while to assimilate it all. It really might be worth asking for a second opinion at either the Marsden or Chrsities if you are in the north of England…not because your own onc isn’t good, but just to get another perspective…as your cancer is presenting in an unusual way it is likely your oncologist hasn’t had many cases like you. The big specialist hospitals will have known more cases.

Do you have good support in managing your sores and the spread to your face? Often hospice nurses have good ideas about how to manage symptoms. I have a hospice nurse who uses her expereince of people with head and neck cancers to help me.

Thinking of you

best wishes


Hi Bex1

So sorry to hear you don’t seem to be responding to Docetaxol - I feel that I am in a similar position. I was first diagnosed in November 2003, commenced a course of FEC which seemed to have little effect as I still had large tumours in both breasts (2 separate primaries)and heavy lymph node involvement on one side. I then had bilateral masectomies and radiotherapy to chest and neck. Started tamoxifen and then exemestane, and was no evidence of desease until the end of August last year when my neck started swelling up rapidly, and mets were diagnosed.
I have just finished a course of 6 treatments and about half way through I felt that the treatment although dramatic at first was becoming less effective and now the swelling is coming back in my neck and shoulder. Like you I also have spread to lymph nodes, though as yet not major organs. I am waiting to have a PET scan this week to compare with the scan I had before starting the chemo (my first treatment for secondary spread) but as my onc is going on holiday on the 11th won’t be able to get the results until the 24th. Now I am worried that this is too long to wait. I am so frightened now that the cancer has become more aggressive but perhaps docetaxol isn’t so effective on lymph node spread? I also have spread to internal mammary lymph node and pancreatic node as well as some bony metastatic desease.

Best wishes to you - do let us know how you get on.


Hi Pat,

Thanks for sharing your experience. I think I’d just taken it for granted that chemo usually works really well on me, so I wasn’t prepared for such a poor response this time.

I saw a different onc today, as mine is on holiday (well I suppose we all deserve a break at some point, but he does seem to pick his moments!!!). Anyway, he was very concerned and suggested we continue with docetaxel, get a detailed MRI scan and possibly add in radiotherapy and herceptin, once my heart gets the all clear. I feel reassured that at least they have a plan, if it shows no sign of response this time - but I know what you mean, three weeks between appointments can seem like a lifetime when things are bad. And going for scans and waiting for results is like torture!

Yes, there is alot of information available for the treatment and control of other secondary spread, but not so much about lymph nodes - I get the feeling it is more rare, and therefore, maybe, as you say, less is known about how best to treat it.

Very sorry to hear your latest course of chemo appears to have failed - was it doectaxel? You must be very anxious. Its horrid to see things progressing when you’re not receiving any treatment, you just want SOMETHING to be fighting it don’t you? It does seem like a long wait till the 24th, and if its anything like the system I’m used to, your onc will discuss the results and the next course of treatment, but not start you on anything then and there -and before you know it, its another week gone! Have they hinted at what the next move will be?

Hope you find a drug which will sort you out, I’m sure you will, sometimes its just a very lengthy and frustrating (not to mention anxious) period of trial and error.

Let me know how you get on.

Best wishes

Hi Jane,

Thanks for the explanation (you’d think after six years I’d know what that meant!). And yes you are correct my cancer is hormone receptive and HER2 positive!

Thanks for the advice re cancer sites and second opinion. Will look into getting advice to manage symptoms.

Had clinic and 2nd docetaxol today (see message to Pat). Am feeling more optimistic again, and should know within the next few days if there is going to be a positive response this time, fingers crossed!

Thanks once again for you support