Hi all,
CRAP!!!
Back again. Original: 2008 (big bugger, chemo, mast, 1 lymph node involved, rads, her2pos, erpos). Recurrence in neck: 2010 operation, followed by capacetabone for 6 mths and herceptin. Second recurrence now : 2 lymph nodes in neck. Onc says herceptin has clearly failed and is stopping it. Cant have lapatinib as had bad reaction. But what if herceptin did actually slow it down? How do they know? Feel like nothing will stop the HER2 steamroller. I pleaded with him not to stop herceptin! He not listen! He famous clever Onc…me tearful, but feisty ignorant lump.
Hoping to have surgery to remove lumps soon. (he had thought inoperable, surgeon thinks she can!) CT scan shows no further spread. Onc pessimistic. Is thinking of giving me break from chemo and keeping it in reserve (i.e. translated…expecting it to spread and wants stuff to fight it later). On zoladex. He might give me another hormone tablet he says, but not sure I think that does any good. Hormone stuff hasn’t so far. Feel like nothing works!
He gave me 2-3 years prognosis! Wasn’t prepared for that. Have been in shock since! Thought I’d have more options at this stage. Wasn’t prepared for such a lack of treatment. Get that he may want my body to rest, but might there not be some chance of slowing down the spread at this stage.
As I said, CRAP!
Please help!!!
G x
Hi Gemdancer,
So sorry to hear your news. When I saw my oncologist last week she said there was a third her2 drug being used at the moment which was taken in tablet form that had really good results. I’m really sorry I don’t know the name but I think it was something like neratinib??
Some of the american forums have more information.
Paula x
So sorry, no wonder you feel crap. Can’t really help but wanted to acknowledge your pain.
As pp said, there may be other drugs out there. I know your onc might be good but doesn’t necessarily know everything, have you thought about asking for a second opinion?
A cyber hug doesn’t help much but I’m sending you one anyway,
love Juliex
Oh I’m also sorry to hear your news. Do you have tumour markers taken? I ask as I had some progression on Capecitabine well over a year ago which has not progressed, has now actually shrunk and I’m still on the chemo. Albeit with regular scans and markers taken. I will be changing chemo when this changes but I’ve already had another year of Capecitabine.
Can lapatinib not be tried again? Herceptin could still be working in some capacity. I too would urge you to have a 2nd opinion asap.
All the best…it’s hard enough without feeling your Onc has given up. xx
Gem dancer sorry to hear of your further recurrence and your onc reluctance to continue with herceptin… Would I be possible to get a second opinion? Or are there any research trial you could try… Eg Avastin?
Try asking for a referral to th marsden if you don’t gobthere as they are very proactive.
Gem
Sorry to hear your news. I would definitely go for a second opinion from a national cancer centre. Where in the country are you?
As well as all the support you have had here, you could also try the stage 4 forum at breastcancer.org which is an American site. There are many women on there who are very welcoming and have a shed load of experience with lots of different treatments. Sometimes it can be helpful to see what they’re doing elsewhere.
Hi gem
sorry to hear about the recurrence/ progression Iremember your posts from last time around. I’m sorry your onc is being so negative. I have also had lots of negativity since my local recurrence last year and have recently changed oncs as a result. I was told I wouldn’t see last Christmas but I’m thankfully still here!
I am not her2+ so can’t really advise on the treatment issues you have but hopefully you will get some useful info. I would also recommend a second opinion at the marsden. You need to know you are getting the very best care + all options have been considered.
As for the 2-3y prognosis… Noone knows, he doesn’t have a crystal ball so try not to dwell on that comment. I didn’t realise neck nodes were classed as stage 4 but even if they are, many ladies live many years with a stage 4 diagnosis so try to have hope and positivity.
Keep in touch + best of luck
tina xx
I was recently taken off herceptin too-and my argument was exactly the same as your’s. However, he reassured me that if there was the slightest doubt as to it’s working or not, he would have continued-maybe your onc feels the same? I’ve had lapatanib-but that didn’t work either. However, since stopping herceptin, I have had a period of stability-and in fact, some of the tumours have even decreased! As you can imagine, we’re thrilled-so don’t assume that without herceptin, you are doomed! I think a chemo break is a great idea-as long as you are being monitored,so that he can start treatment when necessary. Take things a step at a time-get the surgery out of the way, and you might feel glad of having a break? I’m sorry he has given you a prognosis-I swear this does more harm than good.Even if he is correct, a lot can happen (ie in terms of treatment and new drugs), in a few years. So, good luck-hope it all goes as well as possible.
Thanks for all your comments ladies. It always helps so much. I had been dwelling on the prognosis so so much and cyberhugs always help!!. Just keep staring at my little 6 year old and wondering how much time we have.
I am at a very good cancer centre (Oxford), but they’re not all good at discusing things. Today went better. Onc talking more about options. Much more active and hopeful! Really I would like it cut out, but they want to try some treatment options first and see if they work at shrinking the lumps. I know I’ll end up feeling the lumps allthe time though, wondering if its shrinking!! They have given me a possible clinical trial to consider, called BKM120. Will see if anyone else is on it. Still worried my body is just resistant to everything! At this stage, it’s feeling that life is already over. I had a glimpse of life without too much hospital and hope and now I just feel like it will be constant appointments etc again. I know I’ll get used to it, but I am so envious of normal lives!!
So sorry to hear about the progression but it would seem from your latest post that you have more options and its always better once you have a plan. Please ignore the prognosis of 2-3 years NO ONE knows how long we have this disease is so individual to each person how can anyone give you a prognosis based on what exactly!!!
I hope you dont mind me asking you about the neck mets, only I am worried about my neck at the moment keep getting this nervy sort of trapped nerve type of pain in my neck, cannot find any lumps, just wondering how you found yours or what symptoms might be for neck mets?
Hi SarahLousie,
Thanks for your post. I’m trying not to think too much about it anymore, but it has been yet another wake up call to spend my time doing the important things. So worried for my boy though!
I found small lumps. Didn’t show on CT scan. Did on ultrasound. Like little peas… not too hard and a bit moveable. First time they said it was in the skin. Second time, they have said in lymph nodes. I did have some neck pain first time, but they said that could be anything and I didn’t get it this time. It was like an annoying ache (like I’d twisted it). It did ease off after I had the lump removed, so who knows. You can get neck ache if you’ve had rads in that area tho and from all the crap we’re on. But, I know…every ache and pain is worrying.
Much love, G x
I had that feeling that my body was resistant to everything! I am ER+ too, I have had Tamoxifen, Aromasin, Femara and Faslodex over the past year, all failed and led to progression after 3 months. I then went on Xeloda - tablet chemo in August and things are actually regressing!(and even better I get minimal side effects, it doesn’t even feel like a chemo) So don’t give up hope! There are many treatments. Also ignore any prognosis or statistic they are all based on past data!
Even if statistics are really bad you could be the 4% or whatever it is that actually is ‘cured’.
Iremember your posts from last time around. I’m sorry your onc is being so negative. I have also had lots of negativity since my local recurrence last year and have recently changed oncs as a result. I was told I wouldn’t see last Christmas but I’m thankfully still here!