I’ve been using this site since july 2007 and your posts have always been really sensible and straightforward and thought provoking sometimes.
I’m aware that you’re not having a great time at the moment and I’m sorry if I’m intruding but I wanted to touch base again with you as I have just had a regional recurrence in lymph nodes in my neck (I too had high lymph node after WLE 12 out of 15 and extracapsular spread and vascular invasion). So, I always knew it would return, but it’s still hard to accept isn’t it? PET scan monday to check further spread but I don’t have any symptoms so hopefully that will be ok.
Anyway, just wondered what treatment you’d had and if you had any ‘top tips’.
Just bumping this up for you.I think you might like to send JaneRA a pm.I know she will respond if she is able but she has been quite unwell lately.
Vx
Hi V & L – I sent Hannah a p.m. with Jane’s web page address. It’s also on JaneRA’s profile page here – just click on her name in any post and you’ll see her web adress on her profile page.
Marilyn x
I was also diagnosed last year with secondaries to lymph and have been undergoing treatment now for about a year. Like you I had a high level of lymph node involvement so always knew a re-occurance was likely but still can’t beleive it sometimes.
I’m not sure about hot tips but would certainly be happy to let you know about my experience this year if it would help.
Rather a long story - Just moved house and about to start a new job when noticed neck was looking swollen. Biopsy confirmed secondaries to lymph nodes throughout my body and some take up in bones. I started chemotherapy in September until January (taxotere). This seemed to work wonderfully well at first although by January I was feeling that perhaps the lump was coming back. My oncologist wanted to try hormone treatment (letrozole) and I was on this until Easter but it was not holding the tumours and I was getting some angry raised lumps around my neck and some skin spread. Scans at Easter revealed significant spread so back to chemotherapy, this time oral Vinoralbline but again it did not seem to be working. Getting desparate by then and oncologist referred me to the Marsden. Had a couple of weeks with no treatment while waiting for appointment and things got quite bad. However after my visit to the Marsden I started a combination treatment of IV Vinoralbline and oral capecitamine and this has been working well for 5 cycles now. The plan is that I stay on this treament for 8 cyles if I can tolerate it and it continues to be effective - then ???
Am feeling very well at the moment, trying to take a holistic view and taking loads of vitamins, continuing MLD massage (this has been brilliant), yoga and swimming twice weekly when possible and using relaxtion/visualtion CD’s to help with positive thinking (this is a bit of a problem for me) and also I have a wonderful lady who comes to my house to give “healing”. Thats my hot tips for what they are worth - pm me if you want me to give you any more details.
Best wishes to you and hope your treament goes well.
So sorry you are in this situation. I too have lymph spread, full details are in my profile.
At work at the mo so can’t say a lot, but wanted you to know you are not alone there are a good few of us in this boat sadly, although Jane has helped me tremendously when this first was diagnosed as our spread is very similar. I just hope she is ok, have been wondering but had totally forgotten about her blog, doh, will go and look tonight.
hi all i have also been dx with secondary to lymphs on opposite side, had surgery to remove tumour but onc wants to wait and see before prescribing treatment plan as he say’s he doesn’t want to use up chemo options as i am also triple-neg, i have to see him on a monthly basis at the moment. i am also currently trying to apply for dla, i have been turned down before so don’t hold out much hope this time. i have a spine disease that can cause really bad pain and trouble walking.
i don’t know if our type of spread qualifies under the special rules or not, it is so confusing
love reneexx
I don’t get it, when the spread appeared in my supraclavicular neck lymph on the opposite side, I was told it couldn’t be operated on, yet is seems some people have had it removed.
Since then it has continued to appear in other nodes. I wonder why some operate, and some don’t.
hi jantharra,
my tumour was in the auxilla and the breast surgeon gave me a total clearance, and removed all other surrounding tissue, so i have no underarm lymphnodes left.
i agree it is strange how treatment is different for all, but my onc doesn’t want to give me chemo at the moment while some onc would give right away as a deterrant. don’t get me wrong he had me in for a long discussion about it and he admitted he was in a quandry, he just doesn’t know what to do for the best.
as for me i don’t know either but it is worrying and i’m just going with what they say.
they said they would only operate if my other scans were clear which thankfully at the moment they are apart from 2 small nodules in lungs but they don’t know what they are as they are too small at the moment.
unfortunately onc thinks cancer will rear ugly head sooner rather than later. sometimes when you read about other people you wonder why their treatment is different, it worries you sometime that your treatment is’nt what it should be.
lots of love
reneexx