Hi Everyone
My first post on here, although I’m on my second diagnosis within the last 4 years - this time with Inflammatory Breast Cancer, and Secondaries in the Liver.
Am currently have combined chemo and Avastin and have seen tumour markers drop by 200 in first two sessions - not sure if this is false hope, but its hope… my daughter is only 4 years Old (I was 33 when first diagnosed) so need to have all the hope I can. Does anyone else have IBC, Secondaries and taking Avastin - feel like I’m the only one sometimes, and its pretty lonely having such a rare breast cancer… Anyway, good luck with all your journeys.
hi sorry to hear of your further diognosis ,afraid i dont have ibc but do have liver secondaries ,on which im having regular scans to check for changes .so far so good ,im sure someone on here will understand what your going through ,take care of yourself .you have hope !lynn x
Sorry to hear of your diagnosis, that really sucks. but it is good news that your markers have gone down by that much - which chemo are you having with avastin? really interested to see how they combine it - could be that chemo is doing the work…I had a pretty good response to taxotere for liver mets and it was actually better after 3 so I hope for you you get even more mileage out of it
And welcome to the board. I am sorry you are going through this. It is a lonely place to be. I am sure there are others here with IBC, though I can’t think of whom, offhand. There are other sites offering support, though I don’t know about within the UK. Anyway, I don’t know if you have seen this one but here goes:
I have IBC, liver and bone secondaries. I am currently having taxotere and herceptin. Not sure about tumour markers, going to have another cat scan in a couple of months to see whats happening. I also have children aged 4 months, 2 years and 11 years. I was first diagnosed in december, 6 months pregnant, but still not up to date with all the treatments. What is Avastin? It has all gone so fast I feel lost.
Hi to all,
I started avastin with taxol Feb this year after 6 tax 4 av I had 50% reduction next scan after same amount of treatment 10% reduction I am now on avastin every 3rd week due scan 28th july. So fingers crossed Jo it works as well if not better for you.
Welcome to the forums, I’m sorry to read of your recent secondary diagnosis. I’m sure the other forum members will continue to offer support and share their experiences with you. You may also like to know about some of the other support services from Breast Cancer Care for secondary breast cancer.
There is a telephone support group, the aim of the group is to give you the opportunity to talk privately and confidentially to other people around the UK with similar experiences. Discussions cover issues such as relationships, work, money, living with uncertainty, treatment, as well as everyday life, for more information click on the link:
There is also a secondary live chat, this is Breast Cancer Care’s online chat facility where you can talk to others in real time, it’s from 8.30 pm - 9.30 pm on Tuesdays. It is facilitated by an expert moderator and a nurse who are on hand to point you to sources of help and information, for most people, the chance to talk to others in a similar situation is what counts, again, for more information follow the link below:
The following link will take you to Breast Cancer Care’s publications about secondary breast cancer, including a specific one on liver secondaries which you may find useful to read, there is also a DVD called ‘Living with secondary breast cancer’ which has been recently introduced, you can order these via this link or by contacting our helpline on 0808 800 6000:
I hope this information is helpful to you Jo and please don’t hesitate to contact us either via the website or the helpline for more support and information.
I don’t have IBC but do have multiple liver secondaries and had 18 sessions of Taxol with 12 of Avastin, last year. Your tumour marker result looks pretty impressive and I think you should indeed be (cautiously) hopeful that this treatment is working well for you. Are you going to have a scan at some point soon to see what is happening?
Hopefully you will find a lot of support and information on this site and won’t feel quite so alone.
Hi everyone
Thanks for all your commments - its great not to feel so alone…
I’m having Taxotere with Avastin and the plan is to scan me soon and see whats going on - I’m scheduled for 3 more of Tax and then continuting with Avastin alone. This is actually the third lot of chemo I’ve had and we’ve been through loads of different drugs so am really hoping we’ve found one which suits me. Its great to here all your stories and success on Avastin as its had some bad press and not everyone has been pleased with the results.
Liz - very sorry to hear about your situation, it must be tough with three little ones - and I moan about having just one four year old ! I think the ‘IBC’ club is very small, do get in touch again if you want to email ‘off forum’ (are we allowed to give personal email addresses ? if you want to know anything about my treatment for IBC - I don’t think its a cancer that is seen that often - luckily my oncologist has been getting advice from someone at the Marsden who has a specialist interest in IBC so we think we’re on the right track…
Anyway, love to you all, and thank you all so, so much for your messages - very much appreciated…
I had avastin and taxotere - 8 sessions for liver, lung (lots of little) and recurrent breast tumours (not ibc). By the end of the treatment the lung tumours had shrunk a lot and some had disappeared, the liver tumour had halved and the breast tumour had very noticeably diminished. Don’t know if it was the avastin or the tax though…
It does seem that the taxanes + avastin work well for a lot of people - and it seems to be doing the trick for you. They stopped my avastin after 9 treatments - not because it had stopped working but because they wanted to try hormonal treatment (which is working well at present) and keep avastin in reserve for later.
Jo - I was diagnosed with secondaries in March - lymph, bone and a couple of spots on my lungs. I am having 6xtaxotere/avastin and zometa. First scan showed really good reduction - will be scanned again in August after completion of taxotere. I too have a four year old and a seven year old - they make this all hard but also keep you going.
I have secondary cancer in my lungs - 2cm tumor & lesions, I had 6 courses of Taxotere & Avastin, after 3 it had shrunk the tumour 20% but after six it had stopped working and got slightly worse, so now on Capecitabine. I’m really hoping this is the one for me. Anyone else in the same boat?
Same pattern as me really except that I have liver mets and had weekly Taxol with fortnightly Avastin. Had 18 sessions of Taxol and 12 of Avastin and it shrank the liver mets quite well but then (after a failed liver resection operation and then Megace for 3 m) had had a lot of progression in the liver, so am now on my 3rd cycle of capecitabine. It (very tentatively and cautiously) seems to be working for me as had a huge drop in my tumour markers after just the 1st cycle. Am due another scan soon so will only feel really encouraged once I know the tumours have started shrinking.
Are you just starting Capecitabine? For me the worst bit has been the hand and foot syndrome - very sore feet and hands at the moment and trying lots of different creams at them moment.
Sorry to hear of your continued diagnosis’s especially being so young and having a young family. I can’t help with advice on your question
Hi Ladies
Excuse me crashing in on the theme of the thread as I am not having chemo at the moment just Herceptin. Am I correct in understanding that Avastin is only suitable for ER+ BC? I ask because it does seem to have some remarkable results for secondary cancers
Carol
I am really pleased to hear you had a drop in the markers, I am just waiting to hear what mine were as they were really high. I am just taking Capecitabine, no problems so far although only just finished first cycle. I really hope your scan has a positive result too, I have read some encouraging stories about this drug.
I am really hoping that Capecitebine is going to be the drug that works well for me - it certainly appears to work very well for some (but not all). Really hope that it works for you too. My tumour markers were over 400 but after the first cycle had dropped to 306 - onc was really pleased as he said beforehand he would be happy if they had just stabilised at that stage.
Let me know how you get on.
Sorry to hear your markers are still high. Don’t be too worried however (though I do know how relieved I was to hear there had been a drop so feel I can appreciate a little how you must be feeling). The reason I say that you shouldn’t feel too discouraged, is that when I asked for the tumour marker result, the onc hummed and haahed (as they do) and said he didn’t usually give it out as frequently they would have stayed level after just one cycle or even continued to go up a little. So he spent some time preparing me for the fact that it would be still good news if the rate they were increasing was slower and it still would be a sign that the chemo was beginning to work. Don’t know whether that fits with your figures at all - of course you would need to know how quickly they were going up before.
So early days and hopefully your results next time will show some form of drop. I’m in again on Thursday and will get booked into my scan then - really hoping that confirms it is working well. Certainly it does seem to for many people.