Back from my oncology appt today - was same oncologist - but I’ve got to change!!
Oncogist today confirmed all my fears, mets on reconstruction, mets in my ‘good’ side axilia.
Can’t be operated on at present… Straight onto chem - erubilin… Would even consider gem/carb… And was running round like a headless chicken trying to get me appts… Tbh he has scared the living daylight a out of myself and my ex… Couldn’t get any definitive answer out of him… Back on Wednesday to see another oncologist - as get this, as he is a locum he can’t prescribe me drugs!!!
Had bloods taken and I’ve got a pre chemo assessment on Friday… To say I’m a mess doesn’t even come close…
I wondered if you lovely ladies would give me some advice on erubilin? Side effects how it’s taken and any good results? Because right now I get the impression from oncologist that the games up???
Corinne xxx
How long have you been on it?? Can I ask how they give it?? And how long does it take? I’m not sure I want to go on it… Only stopped Cape as ct showned ned… So how do they know it didn’t work? As I understand it skin mets don’t show on ct scan so maybe it if I’d continued on Cape? Only had three cycles… And why not gem/carb which I heard has good results for tnbc ladies… I just lost all confidence with the hospital… And I can’t understand why they cant just remove my recon? I know you are not a doc but does this fit with other regimes you’ve heard off??
I’m so sorry your TM are on the rise again… I’ve never been told what mine are… I hope your ct scan doesn’t show progression… and that they have something else up their sleeves for you if it does…
Corinne xx
At least i won’t be long at the Hosp then!!! Have to wait to see nxt oncologist on Wednesday. See what decision they make…
Think it might be a good idea to write all the questions down, im like you and m trying not to cry thru the appt!!! The prob I have is that ex does an ostrich impression, I sure he listens to a totally different conversation to me… He even thinks I’m gonna get ‘cured’ even now… He refuses to read any of the literature, even this site and Macmillan… So has no idea what the docs are talking about!!! Moan over - at least he comes with me which he doesn’t have too and I appreciate it . I have no other family left…
I will be sending you loads of hugs, Good wishes, and loads of good vibes!! There’s hoping you can get stable and remain there xxxxx
Corinne (hugs)
Bumpkin - I’m so sorry you have had such a horrid time… I was exactly the same as you when last on chemo and refused to go into Hosp… For me it was fear as I remembered the last time!! I’m so glad your on the mend now and can have chemo to kill these invaders again…
Smartie - to say I’m angry about the treatment oncologists have provided is an understatement… Tbh think of making a formal complaint to the hospital… But I just want to concentrate on getting better at moment…
Ladies - can I ask? Does your hair always fall out? I noticed the comments about it just thinning and hoping I will get lucky with it? Do they give you a wig second time round?? I found hair loss the most distressing aspect of the whole treatment??
Luck to you all
Hi stringbean and welcome to the BCC forums where I’m sure you will find the support you are looking for during this difficult time
Please also feel free to call our helpliners, they are on hand with practical and emotional support for you on 0808 800 6000 and lines are open 9-5 during the week and 10-2 Saturdays (closed BH Monday)
I am posting a link to further support from BCC which I hope will be of help to you;
good morning my fellow ‘spongers’ and welcome to Stringbean and any other newbies…hope you are all as well as can be. Havent posted for a while as been on a ‘downer’ but feel a little better now i’ve caught up on your news. Am due to have part 2 of cycle 2 tomorrow and havent been too bad so far…apart from fatigue. I think i may have been overdoiong it though…lots of work in the garden…and think this has contributed to my weepiness and low mood. Also, when i started on erubilin my bcn said you could stay on it indefinitely as long as you could stand it…now my onc has said i can only have 10 cycles…which is exactly what he said about cape!!..didnt seem very forthcoming with any alternatives either which has depressed me further. So far i seem to have escaped a lot of SE’s…am having steroids with the chemo and extra dexamethasone. I also have Emend for sickness…i had it with FEC too but you have to have your blood tests first then the tablet then wait an hour before chemo which is a pain but worth it, i think. Maybe of some use to those of you really sruggling with nausea.
Can i ask, i get the impression a lot of you ladies are TNBC?? and wondered if erubilin is mainly for that. I ask because i am er+ but the hormone tablets, at least the last one letrozole, didnt seem to work at all as 6 weeks after finishing cape (10 cycles, not necessarily because it wasnt working) and tarting on letrozole, my mets were back and the cancer was back in my reconstruction.
Right, been up since 6am…forgot the sleepless SE!!..so now going to have my clexane injection (for pulmonary emboliosm…yet another complication of this b*** disease and try to have a better day…if i can stay awake. Love to allxx
Hello Helen and stresshead. Helen, the line you are referring to is a Portacath I believe. I had one for my original IV chemo in 2011 and it was brilliant. Stresshead, they put it in as a day case, usually just under local anaesthetic (but I believe they will do a full one if you insist). It was sore for a few days but after that, as Helen says, its just a small needle through the skin. So much easier. I had prepared myself for the Portacath insertion (there are different ones with different names) by watching on Youtube (I watch all the operations etc on tv - doesn’t bother me), so I knew more or less what to expect. If your hospital offers them its well worth going for - none of the faff of having to keep it dry all the time once the insertion site has healed. Good luck. Hugs. Barton.x
I just read the update from 2catlady saying that Erubilin is being taken off the CDF… I’ve just been denied this drug as I have only have FECT for my primary and cape for reoccurence… Need two lines of Chemo after primary… I now have skin mets, infected nodes in axillia and metinsal (sp) and oncologist has put me on carbo/gem at present but says will move me to Erubilin next giving iving me around 2 yrs life expectancy… I take it this means I will now never get this drug? And that my life has been shortened even further…,
I’m so sacred now… Mind whizzing all over the place!!!
Thanks for replying again with your kind calming words… U always seem to reply to my panicked posts!!!
I just worry so much because of being tnbc and there being less treatment options for us…
I’ve never even heard of vinorelbine???
I’m still quite new to this secondary business, made it to 4 yrs 3 mths after primary and thought I was very lucky…
I went and saw my gp Friday and she has given me more diazepam but not sure what effect it’s having at mo… Lol
My oncologist did say I would be lucky to make it to 2yrs, but my husband like you has said she has no exact way of knowing… But I just think he is being hopeful and trying to keep my spirits up!!! Either that or doing his ostrich impression again!!!’ Lol
We have had loads of probs with the Hosp and previous oncologists… and my confidence is rock bottom… I have asked for a referral to the Christie… Hope they are better…
I hope you you doing well, staying stable and coping with all the other crap which goes with this beast!!
Thank for the advice , but I was literally begging herm, but she wouldn’t budge… Just can’t saying it’s the rules, and I don’t meet them.,.,
Like I said before going to the christe soon so gonna ask them their advice…
I’m good thank you… Had my first dose of carbo/gemzar and have been very tired… Tho I think that maybe something to do with me messing my meds up… I got the dosage of steroids wrong and was taking one three times a day instead of two three times a day… Can you get chemo brain this early?!? Lol…
Unfortunately I gave been to Hosp today for day 8 - infusion of gemzar but my bloods are not good enough… So chemo missed… Let’s hope it’s because the chemo from last week is still smashing Those aliens into outer space…
Thanks for the tip about the pots…, I will try that… ain’t got any pots left in my brain to remember things… And my ex wasn’t with me hence the total confusion…,
I’m only 45 feel like my brain is 70!!!
Hello all , hope evryone is as well as can be. Erubilin did not slow or stop the growth of the mets in my lung unfortunatley. Had a break for a month [hadn’t realised how crappy i had been feeling while on chemo] as i have been one one chemo or another for past 18 months. Requested stereoyactic radiotherapy but told as i have more tha 5 sites is is not an option. Onc has suggested a hefty dose of radiotherapy to largest tumour in my lung to try and stop or slow it in its track. She however advises the side effects/complications may be quite severe due to the position near my oesophagus. Going for it anyway next thursday so fingers crossed. Kitty x
I haven’t been on this site for a while. I have been on this drug since January and am pleased to say it seems to be working for me. Everything stable and no new areas of cancer. I don’t have any side effects really apart from being a bit tired a couple of days after treatment.