Welcome to the BCC discussion forums where I am sure you will get lots of good, honest support from the many informed users of this site. As you have been diagnosed with secondary breast cancer you might get more replies if you post in the 'secondaries' area of these forums. Also each Tuesday evening BCC run a dedicated Live Chat session for those with a secondary diagnosis. The session is hosted by a nurse and a facilitator so there is always someone to talk to in real time. I will put you the link below for you to have a look at. I am sure that if you join in with live chat you will be made most welcome.
Hi, I was diagnosed last October with secondaries, 2 nodes under left arm & a tumour in the abdomen (nicknamed 'the alien') pressing on the right ureter, which is causing a slight problem for the kidney. This is being monitored. I have just finished cycle 7 of Capecitabine & having a week off as hands & feet very sore. I began on 5 tablets night & morning, was reduced to 4 each time when feet were seen by onc. during 4th cycle & reffered to podiatry for removal of previously damaged toe nail - done 7 weeks later!!. At recent clinic appt seen by registrar - no reduction despite me telling him that feet were very sore & blistered. Since then Podiatry have twice dressed blisters. Today I didn't get next batch of tablets the pharmacist rang reigistrar & he agreed for an extra week. Most annoying today was that once again the lab had NOT done the marker test even though it was clearly wriiten on the form, 3 weeks ago they tested for ovarian cancer!! Previously they were coming down well, the markers took 'a hit' during first cycle. Next blood test on Friday & marker test has been highlighted in yellow so here's hoping!! I have been coping well but lost it at 06.00 as hands having slept a 5hr stretch my hands were so stiff 7 sore it was very painful to make a pot of tea. Monica
Looking for some advice again. I have an appointment to see onc in July (have written asking for it to be one I know!) to decide which is my next chemo. I have already done FEC/tax, Capecitabine (very briefly as no response) and Carboplatin which had some positive results. I thought the plan was to scan me in 4 weeks then back on Carboplatin. Recently having problems seeing different onc's and advised to have a chemo break which is a nice idea but benefits are being outweighed by the stress of not knowing what is happening next. One onc mentioned Vinorelbine the other Cisplatin as options. I am compiling list of things to ask onc and wonder if there are any other chemo’s out there that I haven’t mentioned. The changes in onc have really thrown me as each ones seems to say something different and treatment plan seems all over the place.
I see Renee & Cazherts mentioned docataxol – is that the same as tax? Also mention of Avastin. I am really getting myself confused and trying to write everything down to ask them on next visit. Last onc I saw said they were not going to scan me this month as I thought – very confused how often does everyone else get scans, you would of thought I was asking him for a trip to the moon!!! I know chemo’s for us tn’s are limited – have I missed any out I should be asking about. I did ask about trials as Luly so kindly suggested, they said nothing suitable at the moment although they would look further afield.
Renee hope you are continuing to feel better and recovering from chemo – any dates for scans yet?
Sorry for going on and not sure if I am making sense just struggling not knowing what is happening but want to be armed with information at my next visit. Have to take control this time but dreading it!!
Hope you lovely ladies are all doing ok.
Sending love and hugs to all Anne x x
Just realised I missed your post on your holiday - brilliant!!! It is so good to get away and my last trip away to London I just felt normal which was just fabulous. The Greek islands are so beautiful you will have a great time - sun, sea, good food, the vino - I can picture it now.
Hope you buying yourself some nice holiday clothes.
Lots of love Anne x x
Thanks very much for that information I will bring it up with onc when I see them next. I would be very interested in taking part, at least I would feel I am doing something.
Hope you all feeling well and managing to enjoy good weather.
Lots of Anne x x
Hi Renee, Anne, Emma and Lulu, Hope you are all feeling well and that you are getting over the horrible feelings of fear Emma.
Well Renee, I'm finished with the chemo earlier than expected. It's having no significant effect on the tumours but before I started on it I had 5 weeks of Arimidex tablets which improved my liver function by 50% at that time. The Onc has done some tests and I'm and 8 and a 6 which apparently is very good indeed, so I'm taking them now and will see him again in two months. Decided that now I don't have to go to the Hospital every week we are going to have a holiday. We've booked to go to Rhodes next Wednesday and I'm really looking forward to it, although dreading the flight.
Anyway, take care of yourselves everyone, thinking of you all. Lotsa love, Dianne x x x
bydand i saw you were asking about PARP-1 trails and i found this info on the CRUK site shows that its taking place in glasgow and appears that its still recruiting...
might be worth a mention to your onc if your still interested.... esp if your on a break of 4 weeks and havent had any more than 3 diff regimes.
Hi Renee & everyone
Good to hear you are recovering after last chemo and you are starting to feel normal again. Totally relate to the tiredness - take it easy and do enjoy the break, sleep when you need to. I do hope it's not long till you get your scan and results - good ones of course!! Sorry about your line - hope it did not hurt!!
I am on chemo break at the mo and loving it but regional lumps are growing scaringly fast so think I will be back on it beore very long - what a thought but we just have to do what we have to do as you say Reenie. My onc plans to put me back on Carboplatin again which had some success last time. Hope all feeling ok and new meds se's not too bad Diane.
Sending love and hugs to you all.
Anne x x
Hi Emma, hope you are feeling a lot better now and are able to cope with what is happening to you, it is a big thing and a lot to take in. Hi to Anne, Jodie,jennie,and everyone else, just thought i would check in and see how you were all doing, my chemo is now finished and i am just starting to feel normal again although still extremely tired, i keep falling asleep when i'm watching something on the telly and never seem to see the end of it.
Still waiting for date for my scan, shouldn't be too long then i will know what is happening.
I got my Hickman line out last week due to a wee accident, i was in the shower and haddn't taken the little bandage og the bottom of my line so it got wet, i had to use scissors to cut the bandage off and ended up cutting the end of the line off too so had to go straight to hosp where the surgeon had to come and take it out, so when i start a new chemo will have to have it put in again. Jodie1 are you about finished your chemo now, you must be fed up but you gotta do what you gotta do, sucks doesn't it.
Hope you are all well and thinking of you all.
Hi Emma and Everybody, Sorry you are so frightened, I know it's a horrible feeling. I had 18 years cancer free from my first dx and the fact that your nodes are clear is marvellous. Please try not to worry too much, I'm sure you are going to be fine for many many years.
Renee, hope you are feeling well today. I just seem to manage ok on the Tax. I get loads of aches and pains and the usual crap, but I just try to ignore it and hope like hell it's the chemo working and not the tumours fighting back!!! The onc did tell me at the beginning that having the tax weekly means that the side effects are less and it seems to be true. It's a nuisance having to go every week, but I'll put up with it. I've had 12 and I've got six more to go. I haven't lost my hair because it's been weekly so that's a small bonus, although I did choose a lovely wig just in case!! It was so nice that I almost wished my hair would come out....
Anyway, hope everyone is well and have had a good weekend. No indigestion Anne, I'll be writing on the other thread shortly. Take care everyone, lotsa love to you all. Dianne x x x
Emma i was 30 when first dx with neg bc and got 16 good cancer-free yrs, everybody is different, i know it is easy to say but try and get out and enjoy yourself and remember you don't have node-involvement, that is another good point on your side.
I will be thnking of you and hope you do really well.
It's every time I see the words 'triple negative' I cant help but look. I know I shouldn't.
Lots of love xxx
Emma - It's absolutely brilliant that your nodes were clear - please focus on that very positive result and don't put yourself through unnecessary worry. I had node involvment from the start. This side is wonderful but sometimes scary if we read stuff not applicable to ourselves. It's a beautiful day hope you can get out, enjoy and put your worries away.
Rene glad you got your docataxol and managed to pursuade the onc to go ahead with it, sorry you feeling rough but good to get it over with, I do hope your scan results make it all worth while. I did not find Carboplatin to bad so feel free to pm me if you want any info about my experience on it.
Saw onc yesterday and she gave me the choice of starting Carboplatin again straight away or waiting to see what happens next! I have opted to wait and review situation regularly with more scans in 4 weeks to check for change. It is just so good not to be on chemo for a while but how do you know what to do for the best?
Hi Diane - lovely weekend for gardening hope heartburn being kept at bay.
Hope you all have a good weekend and those on chemo not suffering too badly.
Love of love to you all Anne x
Hi I'm sorry to post on here, I'm 30 & triple neg, just diagnosed beginning of april and read this thread last night and it kept me awake with worry!
I have been told that my lymph nodes were clear and i'm just wondering about you ladies if your lymph nodes were clear too before the secondaries?
I just cant stop worrying? xxx
Hi Jodie i'm complaining about being on chemo every 3wks as i am usually ill for 2 of them but how do you manage every week, especially on tax.
Hope you are good.
Thanks Anne for remembering i have had my last docataxol, what a chemo, i hate it but then i don't suppose any of them are any fun.
My onc was on holiday this wk so saw a stand in, a woman, but i didn't seem able to connect with her very well, she wasn't going to give me the last one because of the numbness in my legs and feet and hands, i totally understood her reasons but because she didnt seem to listen to me properly i felt as though she was pushing me out the door, but after we got the gist of each other i got it so i'm feeling pretty rough just now, don't know what will be happening, got to get scan done and have a rest and then see what is what but thanks for asking, i will be getting carboplatin nxt time round, i live in scotland too and i think the trial might be the same as the one i'm on but not sure.
Hope you get on okay with your onc today and are keeping well.
Hi Everyone, (And Anne again!!) I've just written on our usual thread. Jennie, I also have liver and spine mets and am triple neg. I'm on weekly tax (12 sesssion last Monday) Don't know if it's working very well though as the last scan showed the tumours had reduced slightly but not as much as he'd hoped. Never heard of this PARPS - can someone tell me what it is please.
Jennie, please feel free to write a PM if you are feeling isolated or worried.
Everyone else take care of yourselves and lotsa love to you all. Dianne x x x
Can I join too please? I’m so glad to find this threat as not alone with triple neg secondaries – know how you feel Jenny.
I was first diagnosed in July 08, lumpectomy, full node clearance followed by FEC/tax then rads. Just after I finished chemo I started having pain in neck and after scans found to have a bone secondary at top of spine and regional recurrence under my arm.
This was followed with Capecitabine for a short time but regional lumps kept growing and I was then put on Carboplatin for 6 sessions. Initially this seemed to have a great effect really helping the pain in neck and reducing my tumours under arm so much so that had another op to ‘clear out area under arm’. Unfortunately I then had another bone met and finished rads for it two weeks ago. At last meeting my onc seems keen on putting me back on Carboplatin but I really am not sure if that worth trying again when I got more spread so quickly after it. I know chemo is limited for us triple negs but am interested in anything that anyone else’s views and experience of different chemos.
Cazherts I would be very interested in taking part in PARPS trials but as I live in Scotland not sure I would be able to take part – good luck with your decision. I do hope you are feeling better.
Renee you must have had your last chemo yesterday – I do hope it has helped, please let us know how your scans go.
Scaryfox I had no problems with Capecitabine on the short time I was on it – I do hope it does the trick for you as many women seem to get on so well with it I was disappointed it didn’t work for me. The Carboplatin was not too bad, I had 3 weekly infusions for 6 sessions and managed to work full time throughout it although I am lucky and do a sit down job that was flexible around my chemo. I did find it very tiring and had very poor appetite but have bounced back after finishing it and am just starting to feel fit again – ready for next round!
I do hope you are all responding to your chemo and it’s good to talk to others in same situation. Any advise for my meeting with onc on Friday would be very welcome.
Lots of love to you all Anne x
Cazherts, I'm sorry you are feeling so rough. I really hope you find some strength back soon x
Hope you don't mind my joining this thread as recently diagnosed with TN secondaries in lymph nodes (neck and chest).
Just started capecitabine 2nd cycle, onc says a bit early to see shrinkage, but that if there is none after next CT scan he can combine with carboplatin injections. Can anyone tell me about these, side effects etc? I seem to coping with the capecitabine so far but have another condition which has made me very weak and am worried if i can take a stronger chemo just yet!
I found that the Carboplatin really helped alleviate symptoms almost straight away and knew when things were going pear shaped again when the symptoms returned- breathlessness and my voice changing. Since switching me to Docetaxol the symptoms have eased but not disappeared. Just had my second dose so hopefully will see another reduction in symptoms. I have a really good relationship with the Macmillan nurse and she has been really helpful in helping to control my symptoms. She has given me a low dose morphine which is for the breathlessness and not pain . I have also got oxygen tanks and a nebuliser in the house to help with the breathing (which she sorted for me) She also sorted out a low dose steroid which I took for a few weeks.
Thanks for the offer of the PM I will be in contact with you.
Best wishes to you all
Hi Cazherts, so sorry to hear you;re feeling so bad. I am trip neg too, I have a regional recurrence in my supraclavicular, not really 100% sure what the means for me, some people say its a secondary others say it isnt. I went to the Marsden in London yesterday, heck of a trip for us as we now live in Devon, used to live in Herts so that would have been easy. I saw Prof and he said stick with Capecitabine for the time being as it seems to be working. When it stops working he is interested in putting me forward for a trial which is currently open to triple neg ladies who dont have BRCA1 or BRCA2. He said it was a parp inhibitor as well as a platinum chemo. Apparently the parps used on their own for this type of cancer have proved unsuccessful but in conjunction they seem to be promising. Im going to see my onwn Onc here this afternoon so will speak to her about it, this Capecitabine was only ever meant to be a holding drug so not sure she wants me to stay on it. I would like something that going to be like domestos in there and clear it out, but as he said, save the drugs for another day as options are fairly limited and stick with whats working for the time being. I hope that helps and maybe something you could think about, I have heard Avastin is proving really good so keeping everything crossed that it works for you. Take care and keep in touch, let us know how you;re doing. Debs x
Many thanks for your comments. I am having a port-a-cath fitted on Monday so will start the Taxol and Avastin shortly after that. My symptoms - Breathlessness, weakness, general lethargy have increased quite substantially over the four weeks since I stopped the oral chemo. I could easily do the shopping and get in and out of the shower but now these normal tasks leave me breathless and miserable. Did you chemo alleviate any of your symptoms? Dont know whether this is the beginning of the end to be quite honest.
Hi Jennie and Cazherts,
I have triple-neg with some added complications and i am on the docataxol and carboplatin as well.
I drew the docataxol and lost my hair but because the first two doses landed me in hosp they reduced my dose twice i had a lot of side-affect and although it still mskes me ill and i have a neulasta injection the following day it is more managable.
When i had my scan it showed no reduction but stable so i have been ket on it although the onc hoped for reduction, when i finish the last dose on 1st june i will be on a break don't know how long then i will be on carboplatin so i'm hoping i hve a better response to that one.
I was dx with bc 19yrs this oct and had a good 16yrs then it came back 2007 had immediate mast and recon the 16mnths later it came back in opposite lymph nodes so they said it was now secondary, they removed all the nodes and cleared the site but i had 2 little spots on my lungs, sosee what happens next.
if any 2 of you need to talk then you can always pm me.
good luck with everything
I was diagnosed with triple negative BC back in June 2008. I had an op, rads and chemo. I went on a drugs trial which was Avastin. I had this for a year. Unfortunately I was diagnosed with lung secondaries in January of this year (so not sure that the Avastin helped in my case). Since then I've been on another trial - Carboplatin and Docetxol. I drew the Carboplatin first and had three treatments(every three weeks) before having another scan. This scan showed improvement with some tumours shrinking and others gone completely. I had a further treatment of Carboplatin but my symptoms had returned so they sent me for an urgent CT scan which showed that the cancer had started to grow again. I have now been swapped to Docetaxol and had my first one two weeks ago. My symptoms appear to be lessening so I am hopeful that the Tax is working. When I was diagnosed in January the Oncologist said I had a few months but wouldn't elaborate when I asked him about it. In fact he seemed to back peddle and said he couldn't really tell me. My Dad had cancer and was told 3-6 months without treatment and 6-12 months with treatment. My dad stayed with us for two and a half years and actually died of a complication and not directly because of the cancer. I think that it's really impossible to put a time scale on anything because we all respond so differently to the treatment.
I know of people who have had Avastin in the later stages of BC and it has been successful for them. I have been surprised at how few side effects I have had with the Tax. I haven't had any nausea or sickness or the bone pain that other people have talked about. I have had a terrible taste in my mouth and a feeling that my mouth is full of cotton wool. This has made my food taste absolutely awful.
Sorry I can't give you any information about the combination you have been offered. Will you let me know how you get on please. I don't know anyone else who has Triple neg and secondaries. Sometimes I feel like I'm on my own and have no-one to talk too.
I wish you all the best and hope whatever treatment you have it helps and you don't get too many side effects.
Sorry to hear about your diagnosis, I'm sure others will be along soon to support you. I have put for you below links to some of BCC's publications which may help. There's also secondary live chat tonight which starts at 8.30pm until 9.30pm and tomorrow, Weds 11.30am to 12.30pm. I'll put you the link to live chat below as well.
I have been diagnosed with triple negative secondaries and the onco said it will probably be about 18months. He has suggested Taxol and Avastin has anyone else tried this combo, did it help. He is also suggesting I participate in some trials in London for PARPS inhibitors. Dont know much about it but I have nothing to lose.