bump…
Hi again Rachel
for tnbc treatment options + feedback, I would try the tnbc foundation forums (google it). It’s an American site but they are so helpful + supportive + unbelievably knowledgable. I’ve posted on there before + had overwhelming support even phonecalls + emails from a patient advocate! They have lots of parp trials going on over there + seemingly more options. But they obviously pay for their healthcare…
It’s so hard to decide which way to go with treatment coz responses vary so much from tn to tn…
Thinking of u stay strong xx
i will look tina thankyou and i hope you keep on doing great xxx
after news of my progression have just been researching the combo of doxorubicin with metformin looks really promising for tn bc has anyone else heard of this ? metformin so cheap x
There was quite a long thread about metformin before, sometime in the last year. I don’t remember it being specifically about it as a combination with doxorubicin,but it stemmed from a study in Canada.
Worth following up.
Perhaps ask the moderators to find it, or post a direct question, mentioning metformin?
I’ve had a look and can’t find it, will put a question up about it now
Finty found it, and posted on the other thread.
breastcancercare.org.uk/forum/metformin-fights-breast-cancer-for-pennies-t29993.html
is about metformin, not about metformin and doxorubicin.
breastcancercare.org.uk/forum/viewtopic.php?f=24&t=32513&p=561134#p561134
is the thread where I asked about the combination.
Hope that helps fairyqueen.
It has helped me realise I have never got to grips with how to use this site, have now learned how to do a first post, and how to use the search facilities.
thankyou LL, i can actually remember that post so am printing off all i can for my onc xxx
Hi Rachel
Like you I am keen on metformin and discussing again with my Onc, was not keen last time. I searched on google triple negative breast cancer metformin and is interesting articles.
i am also limiting suger as well myself to stop sugar surges
hope helps
jo x
I have recently been diagnosed with secondaries in my lungs, I had thought my original tumour to be mildly receptive to hormones but it appears not. My first onset of disressed breathing was at the end if may and It’s getting worse. Any pointers out there on breathing! I have just started a chemotherapy of gem carbo which I would love to know if others are using and their results on it. I am finding it tough but not sure if thats the drugs or the fact I am having difficulty breathing, cancer seams to be a bit like having kids, they don’t really come with instructions, lots of information but no real instructions on how to make it work properly. Triple negative does not sound good either, I try to look for the positive in everything but I am having difficulties in this,
Hi All
Tina - Hope work is going OK. Been thinking about you. Fill us in if you ge a mo!!
Mrsg2gu - Ive got lung mets too! At the moment they are small but very numerous. I am having no breathing problems at the moment. I am sorry you are. So, no tips! Sorry! But I, like you, like looking for positives in things and TNBC does respond well to chemo - so I hope for you too. Welcome!!
Metformin discussion - nothing to add as ‘i know nothing’, but it is really nice just to hear of other drugs. I will log it in my memory banks!
Hope / Jo - How are you doing? With 4 kids you must be super organised. At least two (usually 3)days a week I can not function at all nd need help. How about you? Number 14 just done. SE tomorrow…
Im OK - but it is hard at times. Kids broken up from school now and I wish I could do more with them! But watching films and making smoothies together is fun. My daughter is still in South Africa - 10 days till she comes home. Missing her loads but do get nice texts telling me everything is OK and she is having fun on netball tour - mating hippos the highlight of the safari!!
I finally got to see my scans on monday and it was interesting. Some nodes are def shrinking and some gone. Felt weard looking at them but did help me get a picture in my head of what is happening.
Love nd hugs to all before I hit the couch for 3 days! Weekly chemo messes with your head!! You just feel better and it all starts again. However, if it is working…
Sadie Xx Xx
Hi mrsg2gu I also have lung met dx in march I’m on carboplatin / taxol have had a very gd response lumps shrunk by 70 percent I’m off for num 4 tomorrow then another scan to see how it’s working sorry no tips on breathing but I no chemo spose to help it I hope it foes tc hugs. Laura xx
Hi ladies
hope u are all doing ok. Seems to only be a few of us posting on here recently I do hope the other ladies are ok.
MrsG sorry to hear about the lung mets + breathing difficulties. Gem-carbo is a popular choice for tnbc + can be very effective. I had very good results with carboplatin alone. Fingers crossed that you see some improvements soon. X
hi to sadie, Rachel, laura + any1 else Reading x
I’m feeling ok + enjoying my treatment break. Quite anxious about not being on treatment tho + naturally worried about my next scan. The local lumps+ bumps defo feel worse (bigger +sorer) but no other symptoms thankfully. I’m trying to cram stuff in before my appts in august so I’m off to Ibiza tmoro for a mad few days with a friend til Sunday. Then were going to Dubai for 10days on 1st aug. Managed to get travel insurance outside Europe so thought I better make the most of it!!
As for work, I was meant to be back this wk but last thurs they gave me the option of terminating my contract for a payoff. I decided to go for it as I know they would have gone down the medical (in)capability route on my next absence. All happened very quick + last minute so have been a bit in shock but I’m sooooo glad I don’t have to go back.
Thinking of you all will catch up properly when I’m back from Ibiza. Love to everyone
tina xx
Hi ladies
all very quiet o here?! Hope things are ok? Lets get this thread going again…
I got back from my Ibiza mini holiday late last night. Had a fab time but I’m shattered now + my back has gone! Go to Dubai next week but I’m increasingly concerned about the soreness, lumps + bumps on my side. Gona get an onc appt + scan booked for asap when I get home. Thankfully I’m feeling well so don’t want to cause a fuss now + risk the holiday…
Would be great to hear how you are all doing 
tina xx
Hi Tina
I think you need to change your username to ‘Jetsetter’ - Ibiza and Dubai - lucky you, I can’t tell you how envious I am of you. How long are you in Dubai for? I’ve never been but it looks fantastic - just go steady though or you’ll need another holiday!
The most exciting thing I’ve done of late is a trip to the casino. We were given a free £5 bet and my friend encouraged me to put it on my lucky number on the roulette table - number 13 - and yes it won - £175!! Having been on a bit of a downer all week (told my chemo was not working - lumps and bumps definately growing again) I felt like I deserved this win.
Anyhow thats my update. Hope everyone else is doing Ok
And thank you Tina for getting this thread going again
Linda
x
ps hope you’re back is on the mend
Hi Tina,
hope you remember me, I have been posting on behalf of my best friend Heather who has had a similar experience to yourself with recurrences…she was much encouraged by your last scan results, I am sorry to hear you are worried again. We work together at a school for children and young adults with disabilities and in the last few weeks she has felt well enough to return to work 3 mornings a week. She is having same chemo as Sadie, Taxol/Avastin 3weeks on, 1 week off and hopes to finish end of sept, but may continue if the s.e. are not too bad, then ‘they’ say they will keep her on Avastin and see how things go… I was reading a discussion on another thread, Heather was free of symptoms for just a year before her recurrence. Her tumours have shrunk considerably and she feels and looks well, but on pressing her onc for a timescale they said, months to years, but five is optimistic. What do they know??? ps onc said she could only work in the office but she ignored them and is back in the thick of it, and having a very good time xxxxx
Hi JetSet Tina - Glad you had a fab time! Another holiday round the corner. You deserve it! Sounds like a posotive but difficult decision to make about work. BIG PICTURE - im sure it is the right thing. LITTLE PICTURE - im sure you will miss it! I have been chatting to Claire / Poppet on another thread. I think you are up to date with her. Hugs Xx Xx
Hi Linda - Oh how difficult for you! Even though the Taxol / Avastin is not working are you still on it? When do they review you? I am SOOOOOOOOO pleased you won the money! Well done. Spend it all on YOU - on something you would not normally buy yourself. Go for it. Please keep posting here - esp when you are on a downer. Maybe we can help nd ‘listen’. Hugs Xx Xx
Bestfriend - Great to hear from you. Heather sounds well. Work!! Oh my! I am a million miles away from that. Time scales are so hard. Ive not asked. My Bestfriend died within a few weeks of being told ‘five years’ and I want a lot more then that. I am 100% ME and so statistics dont include that!! Anyway - just my way. Hugs to both Xx Xx
Thanks for kick starting this thread.
Hugs and Smiles to ALLLLLLLL
Oh yes - ME!! Chemo number 15 today. Goodness that is a lot of chemicals - even if they are clever - its a lot!! Anyway 13 and 14 were OK(ish). I was worried cos 11 and 12 were horrid! So fingers crossed 15 follows 14 if you know what I mean! My daughter is in South Africa on netball tour. She is only 15 and three weeks is a long time to be away - 4 sleeps till she is home. So, OH and son been looking after me! I loved the sun on Sunday - a bit pink now - woops!
More hugs to all of us in this most difficult situation - knowing you all helps me so much.
Sadie Xx Xx
hi all , quick update from me, just finished first round of xeloda and my lumps have really shrunk(was so scared to tell anyone in case i jinxed it ) no soreness in good breast now and been really tolerable but as we know just how long these things last is anyones guess, got print outs about metformin and tnbc for my onc, am on a week break at mo know se’s will build over time i just pray it can keep this at bay at least for a while, my first grandchild is only 6 wks away love to you all xxx
Hi ladies
Great to hear from you all
Best friend- lovely to hear from you and delighted to hear that heather is doing so well!! Back to work that is fantastic!! Will keep everything crossed that she continues to do so well on the chemo. What a lovely friend you are x
Linda- sorry to hear the chemo is not having the effect we all hope for 
What is the plan of action? There are so many chemo combinations, I am sure there will be treatments that will have a better response. Have you had a second opinion? The lucky win sounds like a much-needed pick me up heres hoping its the start of a lucky streak for you. I know I have been a bit of a jet setter of late and Im thankful Ive been well enough to do it. Im cramming as much into this treatment break as possible! I have just took a payoff from work so that explains the dubai booking! We are staying in ras al khaimah (about 90mins outside dubai) for a week in a 5star all inclusive hotel, and then we are having 3 days in dubai itself in the amazing Atlantis on the palm. We got a great deal and it will be a real treat- but a very hot one! We went in 2008 but it was late june so we know it will be hotter this time round. Just hope all is okay healthwise as the travel insurance policy we have has a £1100 excess for bc related claims!! x
Sadie! So good to have an update from you. I bet you are really missing your daughter but what an experience for her. Im sure she has had a fantastic time and you will have an emotional reunion when she gets back! When is your next scan? You are doing brilliantly on the weekly chemo so fingers are crossed that its still doing its stuff Hope the se’s this week are not too harsh. I had a message from claire but havent spoken to her as yet. Ive told her to call me when she is upto it. Im sure she is really greatful for any advice and support you can offer her. Its just not fair is it x
Rachel- Im thrilled to read some positive news from you |I have been worried. PHEW!! You deserve some good news and from what ive heard, capcetabine is well tolerated so its a win-win situation. X
Im feeling super tired so off to bed in a min. A bit peed off as I dropped my iphone on the kitchen floor earlier and the screen is broken. No doubt that will cost me a fortune to fix! Had a brill few days of partying in ibiza- did allsorts and it felt like we were there much longer. Lots of clubing, eating and drinking to excess and I felt quite normal which was fab. Feeling excited about our hols next week but a little nervous as my side is so sore. the swelling at the collarbone is back too but only noticable on occasions- very wierd. Spoke to my bcn today and she agrees if I am only having local symptoms and feel well, I should go away and follow things up when I get home. I know for a fact I will be back on treatment by this time next month so Im just making the most of this time and the fact that I could actually get travel insurance. Fingers crossed for me ladies
Love to everyone
Tina xx
Me again
Fairyqueen - what good news re the shrinkage. Isn’t it silly that we think we can jinx things - but I bet we all do it!
I bet you’re really excited about being a grandparent - how nice to have something as wonderful as that to think about.
(I’m 47 and never had children, but 2 years ago I remarried - my husband has 4 grown up children and thru them I’ve now got 6 grandchildren!!!)
Sadie
What a wonderful opportunity for your daughter to go to South Africa - but I can imagine it’s felt like an eternity to you. You sound like you’ve a wonderful (and talented) family.
I’m so pleased you’re managing on the weekly taxol - 15 is a lot - are you going to get a break for a while?
They gave me number 13 of Taxol and Avastin last week and then made the decision that that was it - the tumours in my neck are just growing again. I’m upset that I’m giving up on Taxol as I feel that I’ve coped really well on it - and that initially it worked so well,
I’m now waiting for radiotherapy appts and after that a different chemo (Ithink). I’m going to keep smiling and hope the radiotherapy blasts the little blighters.
Hi Bestfriend
We haven’t spoken before, but I firstly wanted to say that I think its wonderful that you are taking time out to support your friend like this - you really are a bestfriend
Please don’t let my disappointing news about Taxol and Avastin get in the way of things - others do so well on it.
I asked my onc about life expectancy and he said a few months to a few years. Needless to say I was distraught but I’ve now come to the conclusion that although he is a loveley man, he is a bit of a
Dr Gloom (so I’m choosing to ignore him!!)
All the best to everyone else
Off to bed now - I need plenty of beauty sleep!!
xx