Thanks for all your comments everyone, I am still in hospital, still a mess, remember that episode of SATC where Samantha gets a chemical peel? That’s me, only more bloated and with knees, chest and elbows to match.
Oncologist just popped in though to tell me abraxane has been approved as an alternative - it’s the same active drug apparently just not dissolved in the solvent which causes most peoples allergic reactions. Scheduled to start this plus avastin on Tuesday, itch/allergy permitting.
I haven’t been test for brca1 ever so not eligible for parp trials…
Lol itchyfox !! Good to see you haven’t lost your sense of humour despite this weeks events FAB news about abraxane approval I’m sure you will be fine on that. Shame about the parps- I am paying privately for genetic testing although no known family history. Want to know now if I have brca1/2 so I can access trials later if+ when I need them. Results guaranteed within 8wks costing £655 for comprehensive testing. My dads mum was adopted +she only had 1 daughter the rest were boys + their kids were boys except me. So it’s possible that there is something genetic going on but due to small, male dominated family, were not aware of it… It’s (another) itch I have to scratch (sorry scayfox!) not just for me but for my little boys future family and my little niece. Should have results by Xmas.
Hope everyone is ok
love tina xx
Morning!
Itchyfox, I like it, but hope Scareyfox is back soon! What a relief the abraxane has been approved…and fairly quickly too.Don’t you think it’s odd that the solvent is known to cause allergic reactions yet they continue to use it? I hope your symptoms are easing, thinking of you.
Tina, I’m not too bad thanks. I’m going in hospital Monday for chest drain, oh how I’m looking forward to it!!! My next chemo is on Friday so should all be done in good time for that. Saw my onc yesterday and she seemed to think the hard lumps in my breast have softened, which is good news, although I’m not so sure they have, but hey I’ll take any positive news that’s on offer. She has also changed meds with chemo as I was sick and nauseous last time.I’ll wish you a Happy Birthday for Fri in case I’m not home in time to do it…also crossing fingers & toes re rads.
I’m going to a “do” on Sunday with OH & friends, looking forward to it. Should be interesting because there will be people there that haven’t seen the new me…with short grey hair instead of a chestnut bob!!! Perhaps I’ll take my camera!
Wishing you all as good a weekend as is poss, Love Sandra x
Hi Scary (currently Itchy!)Fox and Sandra,(and Tina!)
I’m so sorry you have found yourself in another unpleasant situation SF - don’t give up! I’ve heard that Abraxane is very good, comparable if not better than Taxol, but without the SEs and a much shorter infusion time. Good luck with everything on Tuesday.
Sandra, I don’t envy you having a chest drain, but maybe it won’t be so bad. The oncs (usually) know what’s what, so it’s good news that she thinks your chemo. is working on your lumps. Hope you have a good time with your friends tomorrow. It’s my Mum’s birthday, so we’re going out for a pizza (nice to break my diet!), but my son nearly 12) wants to go first to the Museum where Titan the BB robot is appearing(can’t wait! ha ha!). Love to you all
Sarahxx
PS Tina genetic testing thing sounds interesting, though a bit expensive for me. I’m adopted and have no idea of my biological family. Is it just for triple negs? - I’m actually weakly er+ and neg. others, but I came on here because some of you seemed to have similar experiences to me. I have regional recurrances and neither primary nor truly secondary - not too many of us around! Had my rads already- finished a month ago- pretty painful after-effects but a lot better now. Having CT scan in a month.Pleased about your results, Tina.
Hello Gingerbud, Scaryfox,
My best friend of 30 years has been battling triple neg bc for nearly 3 years, mx right side then two years later skin mets on the scar. now chemo and waiting for a second op on the scar site as skin mets doesnt go… she won’t come online, too scared of what she might read. I just wanted to say how much your posts have helped me to support her, thank you for sharing your experiences with those who need, you guys are amazing xxxxxxxxxxxxxxxxxxx
Hi ladies
bestfriend- what a lovely friend you are hope your friend is ok + the surgery is successful for her. I’m having a nightmare time with skin mets so know what she’s going through. Let ius know how she gets on x
sandra hope you are having a fab time tonight + best of luck for the chest drain tomorrow. Hope it goes smoothly + doesn’t hurt too much x
scaryfox hope you are on the mend + are home from hospital? X
Sarah sorry I misundestood your post about the rads + ct scan doesn’t take much to confuse me these days lol! The parp inhibitors are being trialled on triple negs but only those with brca1or2 can access the trials currently. This is why I’m paying to be tested. Parps have been found to be very promising thus far in trials so I want to know now if I have the gene defect so I can access the trial if+ when I have further spread. Hope you’ve had a nice weekend x
dianne, deb + anyone else I’ve mssed- hope you are well + have enjoyed your weekends x
love tina x
Hi Everyone, lovely to see all the posts, Tina, thanks for your kind words, I’m so sorry you’re having such a hard time, I’m thinking of you. Scary/Itchyfox - take care of yourself hon, great that you can manage to laugh about it - god knows we need all the humour we can get.
Sandra and Sarah,thinking of you both and hoping all is well today.
Hope everyone has had a good weekend, mine was good (although dry because of the antibiotics)!! However, they’ve now finished, so roll on this evening when I can have a glass of wine with dinner.
Take good care of yourselves everyone, lotsa love to you all. Dianne x x x
Hi ladies hope everyone is feeling ok?
Just letting you know that I am FINALLY starting rads on thursday. So relieved coz the skin mets have really flared up the last few days so my anxiety levels have been through the roof waiting to get started. Im doing 3 weeks then a week and a half of boosters. Im having the maximum dose apparently so Im keeping everything crossed it does the trick.
Speak soon
Tina xx
Hi everyone. Hope you are all well. Glass of wine sounds good Diane - but have had speckled hen instead!!
Scareyfox - hope you are feeling better. Sarah how was the pizza. Hope the doo was good Sandra - not too exhausting. Good news on the rads and did you have a good birthday Tina?
Had my CT scan results today. A little upsetting. Maybe I am expecting too much. Onc is happy to continue with the chemo (carbo) as the lumph nodes are not growing, but they have not shrunk. However, you can feel that some have even though it doesn’t show on the scan. The nodes seem to swell during the second week?? Don’t know why.
I was hoping for shrinkage - can’t bear the thought of doing chemo/this regime for the rest of my life. But, I need to wait and see what happens after a few more cycles. But, like the onc said, they do not know whether the cancer will start to grow as soon as the chemo finishes. I was hoping for a few years respite!!! I can’t see a clear future at the moment - how it is going to affect everything. It is so hard not being able to talk to anyone without crying - so you don’t talk. Pretty crap really.
Anyway - let’s be positive - I am not going to give in - the little cancer cell b***ers can go to hell.
Let’s go have another speckled hen and a packet of crisps.
Speak to you all soon - a little busy as well sorting out my mums house as she has just gone into a care home (Alzheimers).
Hi Everyone, Kelly so sorry to hear your scan results aren’t so good. That happened to me when I was on the taxotere, they didn’t grow, but they didn’t shrink much either so the onc stopped it and put me on Arimidex daily and they are much better, my liver function has improved enormously so don’t be too down, there are lots of things they can do. Have a glass of vino with me instead.
Tina, thank goodness they’re starting the rads tomorrow. Good luck, I’ll be thinking of you. At least it’s over quickly unlike the chemo. I’ll be thinking of you.
Scaryfox, Sandra and Sarah, hope you are all well today. Hope I haven’t missed anyone out. Take good care of yourselves everyone, loads of love, Dianne x x x
Sorry to hear that Kelly, it seems carboplatin is not very strong, I got taken off it cos it wasn’t doing enough. I guess it was too much to hope for with such minimal side effects! Sorry about your mum too, sounds like you have lots on your plate.
Tina - pleased for you - hope rads do the trick!
I finally got out of hospital Sunday, itching calmed down a bit though I am still very sore and covered in scabby bits! They gave me my first Abraxane (as alternative to Taxol) yesterday but postponed the Avastin till next week to give my skin more time to heal. Abraxane was so quick, tiny little bag, only 30 mins, I think the ‘flush’ took longer! I am now nervously waiting for side-effects/praying I don’t have an allergy to this as well…
Bestfriend, glad to be of help! Bet your friend really appreciates your support.
Hi Scaryfox, we must have been posting at the same time. Pleased you are out of hospital, sorry you’re a bit scabby!!! Hope the Abraxane is ok for you and you don’t get any se’s. I haven’t heard of that one before, is it a new drug?
Take care of yourself and have a lovely day. Loads of love, Dianne x x x
Thanks Dianne! Yes I think Abraxane is quite new. My chemo nurse had never administered it before. My oncologist had to make a special request to my insurance company because I was allergic to Taxol, as it’s a lot more expensive - luckily they agreed, though I’m sure it goes over my £ limit. It’s supposedly the same/similar active drug as Taxol, but disolved in a human protein rather than a solvent so that it’s easier tolerated. I’ll keep you posted re side effects over next few days!
I’m starting on Abraxane next Wed 27th Oct, I’ll be interested to read your experiences on it, I’ve had FEC last year/early this year but have heard the SE’s are not as bad.
Sure Claire, feeling OK at the mo, just tired (as usual!), but it’s only been 24 hours. Next few days are most likely for SEs to hit I think. I’m having it weekly (for up to 12 weeks) but onc. suggested a CT scan around week 6 to see if it’s actually doing anything!
FEC was the chemo regime I was on previously…pls dont ask me to spell it wouldn’t know where to start. SE’s are Side Effects. You’ll pick up the lingo soon enough!!!
Scaryfox I’ll be on 6 x 3 week cycles, hope it treats you kindly.
Dear Scabyfox(!) and Diane - thanks for your thoughts. It is the unknown, the future that I am scared about. Just read a comment about a lady (2 ladies actually) where they’ve given up on them as there are no chemo options left for them.
Anyway, glad you are out of hospital and feeling a lot better, though scabby. Excuse my ignorance but was is Avastin if the Abraxane is the chemo. Is Avastin a pain killer, and did you find out what is causing the pain in your chest?
Scaryfox, I do hope you are able to cope with your new chemo without too many side effects. I am certainly thinking about you and everyone for that matter. For my part I feel a bit of a fraud. I am half way through second week (first cycle) of Capecitabine and so far so good - apart from a bit of nausea and tiredness I am coping well. I have decided to see a Counsellor as I feel I need to get my feelings out in the open - at the moment even though I am taking the chemo I feel this is happening to someone else. I really thought after four and half years this was all behind me. I don’t want to burden my family and friends, my brother is a MS sufferer and his illness gets worse with stress. He has been so supportive by telephoning me every day - he lives 200 miles away so we don’t get to see each other too often. My sister who does live near has been a real rock but her husband is in remission from Lymphoma so I really feel she has enough to contend with. This was my reason for the Counsellor. Has anyone else had counselling or am I the only wimp. If so, did it help.
Incidentally, I assume you all know that apart from October being Breast Awareness Month it has been decided to dedicate the 13th October to Secondary Breast Cancer Awareness Day. In fact watching Prime Minsters Questions today an MP asked the PM to have a meeting with the various charities with a view to making more people aware and also presumably to help with research.
Hi Everybody, Scarylady, welcome to the forum, though sorry you’ve had to join us here. Don’t worry about the abbreviations, half the time I don’t know what they are either, but there is a place on this website where you can look at them, I can just never be bothered!!
Margaret, don’t feel like a wimp because you’re having counselling, whatever helps you - go for it. Hope you continue to feel well with no se’s.
Kelly, hope you are feeling a bit better today, there will come a time for all of us when they give up because there’s nothing left, but that could be years in the future, so try not to dwell on it and enjoy every day as if it’s your last. That’s what I try to do, I eat and drink whatever I want although I know there are lots of ladies who would probably give me a hard time over that. However, I truly believe that when your number’s up there’s nothing you can do about it so I intend to enjoy the rest of my life with whatever makes me happy. I totally refuse to let this horrible disease rule and ruin my life and when I get down, I think about something else!!!
Scaryfox, I hope you are still ok today and the se’s haven’t reared their ugly heads! Please let us know how you get on with it. Thinking of you.
Tina, hope the rads go well for you today and that you feel ok.
To everyone else, hope you are well and happy and have a pleasant and painfree day. Loads of love to you all, Dianne xxxxxxxxxxxxx
FAB news about abraxane approval I’m sure you will be fine on that. Shame about the parps- I am paying privately for genetic testing although no known family history. Want to know now if I have brca1/2 so I can access trials later if+ when I need them. Results guaranteed within 8wks costing £655 for comprehensive testing. My dads mum was adopted +she only had 1 daughter the rest were boys + their kids were boys except me. So it’s possible that there is something genetic going on but due to small, male dominated family, were not aware of it… It’s (another) itch I have to scratch (sorry scayfox!) not just for me but for my little boys future family and my little niece. Should have results by Xmas.