Breast Cancer Care Forum

Hi jo, you can change your name if you want...ask the mods gelp   loads of love and hugs   Moijanx ... View more

Let us know how you get onxx   M ooh and were you ever admitted to a+e on carbowith high temp? last time iwas the nurses bunged up teicoplanin, another nephrotoxic before asking me or chatting to the doctor. I was on Paclitaxel then tho not carbo..not sure wether kidneys can  cope with both..,theytailor the drug dose to your kidney function...At my hosp.   moijan🤗😘 ... View more

Have just had third of first cycle it’s made me a bit miserable, but the premeds always fix that,,,,not sleeping well.thanks for askingxx   Yes, I almost said ask about the trial first as that will maybe give you some extra months/years as well, they take liquid biopsies (blood)and look for markers in them, I had fulvestrant looked for too...no markers for the trial youmention but yes for fulvestrant...but didn’t work for me.  ,, do they do that trial where you are..I know marsden do ..you might neeed to consider with your onc whether to be referred to another hosp. Or wether to  plodd on...again your choice, has to be, know it’s hard xxx   Moijanxx😘😘😘 ... View more

Hi Bon,   ‘’I was chatting to a friend yesterday about. Our meet up in 2016 we both recal lthat get together with fondness.....and the Tea we had in John lewis   Ah well, maybe again one day xxxx   Moijanxxx ... View more

Ps sounds a good oncxx   i can always reach mine via his pa and get email replies, but never phone calls. He sounds very good at communication xxx   mx ... View more

Are you happier now, that he has stepped in? Helpsa bit doesn’t it xx   iidont know, but I think they are tablets...which might be travelable, it might be good to see how you feel on then.i know some people have had side effects xx   very very best of luck...when do you Start? Would love to hear how it goesxx m🤗 ... View more

No...I wanted to go back to Oz again, I emigrated there in my 20s.   but I’m afraid, I was latterly doing one of my projects...an hnd in fine art and delayed going, then cape failed me, was tied to a cannula....ever since really   if you have travel plans...I’d chat to onc, and if he’s happy, scout around..,there are good companies who will insure us...they alway asked me’how Many times a year do you see your doctor....well, have other doctors for other things so sometimes the answer puts them off, or they will cover anything non cancer related..which as you know.’ Is a bag of kittens’ but we can get insurance..I never skip it, because if I were to become ill in transit, the plane would stop and may put me down in Asia or other - then needing to be medivacced home..,which they do by giving you a plane to yourseef witt doctors and nurses.. .that can cost in the £40, 000  range...apols if you knew thatxxx   Last time I went back to oz....just before I became metastatic, a company asked me for two year printout from my gp and insurance cost me £1060 !  But I went because I really wanted to go.   good luck whatever you choose 🦋🤗   moijan   ... View more

Helen   nice to see you here...how is pac going? Didn’t work for me😰 so on carboplatin   even less pleasant and with novweeks off   moijan  😭 ... View more

Hello Hlarson...   welcome to this thread.  What a lovely positive and inspiring post xx   hope things go well for you on Erib..it killed mine atoepoint but sadly grew back later, but had about 21 months on it.   actually, I got sore fingers which recovered well, I must have got the tiredness,but really I can’t recall...this chemo is an absolute joy, compared to my current one! I recall it very fondly.   alto I began the thread..Withasmile is now likely the current lady who would be good to discuss s/e and strategies if need be...I lost my hair, but it started regrowing almost immediately! I lost my lashes and eyebrows, got them back now tho.     very very best of luck...and enjoy.xx I miss this chemo   xxx   Moijan🙏🤗 ... View more

Hi jojo   I  did lose my hair on Eribulin....but it started growing back..my hosp doesn’t use the cold capwith it as apparently there is no evidence it work...it’s avery busy hosp and cold cap, as you say adds a lot of time to either end   my treatments were about ten minutes with a pre and post flush, I was usually out very quickly indeedxx   good luck with everything   Moijanx ... View more

Sarah, thank you again for getting back to mexx   M   did puta link to cape. Thread on bone jmets thread   good luck with onc discussionx     ... View more

Yes Tessa xxx     i  understand only too well   do pm me if you’d like   love and hugs...and thank you for your responsexx   xxmoijan,   ... View more

Nicky, thank you so much for that info.....what a gem you arexx   Moijanxx ... View more

Sarahnew , thank you so much for sharing about Carbo, I am hoping now for similar resultsxx whereas was feeling quite low...as nothing has worked for me for a year and my liver mets are creeeping along   of course you are feeling overwhelmed.   Xx And of course you will have to choose/make up your mind...and it’s difficult...your onc has given you a lot of choices.... do they have fulvestrant at your hosp?    i was on Cape at the outset and it worked for Me for about 22 months.,,it depends on the individual....there is an excellent Cape thread where you will find a lot of users to discuss Cape with... I thought great- tablets, can travel and that was for me personally a freedom which I miss.   Could you pop back and chat with onc about success rates, maybe for these options.? He sound very on the ball, but I agree with you...needs careful thought.     very best of luck with your decisions       https://forum.breastcancercare.org.uk/t5/Treatments-and-medical-issues/Xeloda-Capecitabine-Your-Top-Tips-please/td-p/645043/page/53     hugs, Moijan ... View more

Hi Bon,   glad you you are enjoying  your breakxx   I too love Devon, have a few relatives down that way, so hopefully, might get there for a weekend soon xx   best wishes, Moijanxx   ... View more

Hi Optimissy,   lovely to hear from you xxx   so impressed, you managed to give up the ciggies...always a toughiexx   hugs and best wishes, Moijanxx ... View more

Hi Rosie/Jannette   no offence at all,, on the contrary...I was pleased to see you shared your views, which I did feel were absolutely valid. I am of the opinion that  none of us, should be trying to influence others around to  our own viewpoint.       I too found the situation really hard as my drugs have not worked for a year now - and so the stats chat, even though they can’t be accurate - it hit me very hard. It Can be hard to stay positive at the 5 year mark!   I Personally feel it’s important that we do make our own choices...after all, whatever we do will have an outcome...good or other, Which we will have to live with... so it has to be our own choice.  would hate people to feel that a cc, or an ex professional(of which, sadly there are many on the forum) had expert knowledge  - we don’t - bc is a big minefield. And this forum is just here for support.   Nice to see you posting - moijanxx ... View more

Hi, I know you asked BLueash, but spotted your query..she may well have other tips when she spots your postl, but I’ve recently done 5 months of cold cap...no ears don’t get frozen, head does feel very cold but I took two paracetamol just for comfort, and I also wore a paper theatre cap over my hair...you might not be able to get one tho,, take a headband, and a spray of baby conditioner with you as they dampen the hair well beforehand. Buy a wide tooth comb...,   there are threads where people give many more tips on this...,I stopped washing my hair for almost the whole period of treatment..it can get very fragile and so if you wash it, use baby shampoo and pat it on, and rinse with no massaging at all, use a baby conditioner and don’t use a hair dryer or hot tongs.....I’m still keeping to those guidelines as I’m on another chemo where they won’t give me the cold cap. I don’t want to lose it again   best of luck   Mx ... View more

Yes Bluash, think you are right about the reason,,..also depending on the type of recon you might need a plastic surgeon...I was about to have a tummy one, but decided not to at the last minute and was really glad later, as that op can take 8 hours...and then they found i had mets, so I would have been struggling to get over the 8 hour op whilst being treated for mets....,.     I had a recon at my primary mastec, after pre op chemo didn’t shrink the tumour, in those days, 2001 It was different..after my recon I had rads which hardened the implant, and I got an infection, so eventually had it removed, ......   ‘’I too welcome you to the forum and you will get support..wishing you well ’moijanx ... View more