Breast Cancer Now Forum

Kadcyla started last Friday . All went in ok 😃    Have be kept weighted MRI for 4th Feb and they will use that as a baseline for me . The CT and last MRI showed no fluid at all. Waiting to see if symptoms subside with treatment . They seem to think two to three cycles before any results.    I really didn't want to change but felt with the symptoms I had no choice . If it got a hold it can get really nasty so I went for it . Now O pray it does the job ❤️    How owe are you ladies getting on ?  ... View more

Hello  Just thought I'd update you since my last post .   ive had more consistent symptoms of the abdominal swelling and occasional nausea. I have felt so bloated after a meal and I am finding those days it's affecting my breathing . So after talking things through with my GP I've decided to take the plunge and change treatments.  So I start Kadcyla next week .. 😃 Not sure about next scan think it's still booked in Feb . 😃 ... View more

I am sceptical on what this consultation will bring about.  Simon Stevens says "The new Cancer Drugs Fund offers a route for sorting out the wheat from the chaff, so that patients in England get faster access to the genuinely most promising new treatments. For those drug companies willing to price their products affordably while sharing transparent information about ‘real world’ patient benefit, the new CDF will offer a new fast-track route to NHS funding.”   what does he mean by " real world " patient benefits ? WHERE does  this information come from , WHO decides if it's "Promising" and How is it determined if it is promising.  If we go back to the Sept 2015 National Audit , completed on the CDF we can read that virtually no data was collected or shared between hospitals of funded paitients of the CDF after its initial creation in 2011 .Plus less than 7% of hospitals provided an outcome report .. In July this year NHS England and Public Health England finally established a data sharing agreement allowing paitients data to be tracked . But this won't be of any use yet so this adds more importance as to this " real world " benefits ? It's so vague .  The other issue is as always money .. What do NICE consider affordable and what criteria do the drugs have to meet in order for them to be considered affordable.  The statement regarding "fast track routes to NHS funding" is little more than window dressing . I have changed treatments within two days onto drugs funded by the CDF now as it has stood for three years . Mr Cameron said: "Other European countries are doing better than us at giving people longer, happier lives with cancer. "We want to get more drugs to people more quickly and in the UK today there are some people – thousands of people – who want a certain cancer drug, whose doctors tell them they should have a certain cancer drug, who don't get it." Where we were once leaders in Cancer Care and the envy of the world with our NHS we are now way behind other countries in Europe and even some , what were considered third world countries are doing better than us ..     ... View more

Hi there    last October I started to get a distended abdomen .. Not much else . Went to GP as advised by my team and after a few GP type first line treatments , I had a CT scan . This showed clear but the Onky was sure it was Peritoneal mets . I wanted something more tangible so went for weighted MRI but again nothing . Also nothing  in the bloods every one within normal range including CA125 tumour marker test hey say gives good indication of protein produced if mets in peritoneum . He still believes it's mets there so I am now awaiting another weighted MRI in Feb .. In the meantime I've been on a gluten free diet , changing all my GP type meds , co codomol , Movicol etc one at a time to see if that helps. Had this for three and a half months now so I'd have thought something would show by now .. I'm sorry your having to wait round after the Crimbo Holibobs .. Me too .. You do have company 😃.. I will also be changing to Kadcyla if we get the tangible proof im after as Her2 positive xx I had a hysterectomies my back in 2009 so no overaries for me .. But if you feel better with them gone then I'd push for it . It's key hole surgery .. Cancer is as much phsycological as it is physical xxx  ... View more

Personally I am pleased to see the ribbon with black on to choose from. ill look forward to it becoming available soon to buy and bring secondary breast cancer a little further into the open 🙂 ... View more

I'm just wondering with the BBC having completed and screening a drama starring Sheridan Smith 'The C Word' about Lisa Lynch it might be a good idea to use this in some way to launch a new pin? The drama is in relation to Lisa and her dx of Breast Cancer then treatment and mamogramme being told she is in the clear then finding she has secondaries two years later . Deadly and incureable she dies after it spreads to her bones and brain in 2013 . It's recent ,relevant on TV and stars a popular actress might even be screened near October . ... View more

If the butterfly is chosen then number 11 pink wings up top and black underneath showing the hidden part of Breast cancer. I feel the iconic pink ribbon with black would better though. People associate the pick ribbon with Breast cancer and for it to have black on it would be significant for SBCN. Whereas the butterfly is a whole new symbol to educate people about .. Pleased we are getting more publicity for SBC x ... View more

Hi thee I don't come on the forum too much but your post caught my eye as I am due to start the same combo on the 16th/17th October . I had one fec treatment before and used cold cap and it seemed to work for me so I want to keep going .. I'm not sure if the perjeta responds to cold capping did you use it at all ? I hope your first session went well . If you pm me i will defiantly get your response as I'm not doing too well with the new site x ... View more

Hello stars I have been having a bit of a confusing time of things late Y but that story is for another day . I am off for my first chemo on Thursday morning 9.15 to get the cold cap up and running then drugs from 10.00 so will try to check in on Thursday or Friday to let you know how I'm doing .. Take care everyone x x ... View more

Hi there I was a runner until surgery . I'm just starting back at gym 2weeks post mx and ANC . Just walking and on the bike I also have three dogs so need to get my butt moving every day . I hope I can still do something while in chemo. .. Good luck x x ... View more

Hi there . I'm only just starting my fec - t herceptin , programme but just undergone mx and ANC post op two weeks and doing really well so far. Defiantly not looking forward to chemo . There are some monthly threads running in chemo therapy section for people who are going through chemo to support and share experiences and I think you might find them very useful. Each group usually has a list of regimes people are on and the postings share hints and tips and people's side effects. There is one going at present called September stars for people like myself who embark this month some are embarking again and there are of course previous groups to refer to. Pop on and join or have a look through the window . It's good to share and find comfort as we feel we are not alone some groups are up to 60 ! All the very best and you will get that wedding and look beautiful once this folly is behind you X x ... View more

Quick handy hint .. My onc told me to paint my finger and toe nails before every taxotere (docetaxel) as its possibly the light reacting with your nails and the drug that makes them break and flake .. Ill see if it works can be worth but a try .. ... View more

Pass the boss. Pleased your back and reasonably ok as you say one down .. Did you try the cold cap ? What was the run down on that from anyone would be fab ladies please .. ... View more

Thank you lulu for all the great hints these things really help when shared .. Understand it much more now ... View more

Elma and racheir ill try to stay positive keeping busy so that helps. I notice a few ladies are nor sleeping and are on here in the middle of the night . What is it that keeps you awake ? I notice one post mentioned the steroids why would this be ? Racheir what is neuulasta and what's it for ? ... View more

Welcome katepb .. Pleased most people who have been for the first calling are doing ok. I had visions of being stuck in bed for days or laid up in hospital ! Imaginings cause my mind to go a bit crazy .. I have my onc appt on Monday and boy am I scared . My BCN has try'd. To prepare me for it as I had large lymph node involvement and her2+ and at least two grade three tumours .. Have now had to had bone scan and body scan and have been to told they are doing them for a reason .. Bloody brilliant get the coffin ready !! I'm not giving up that easily .. Bring on the chemo bring on the rads and herceptin and I will deal with it .. After all we don't really have a choice .. Hey ho onward and upwards .. I am on Facebook but the link didn't work for me .. Take care stars one and all ... View more

Good news you got through ok and even managed to have a laugh. Some nurses are worth thier weight in gold .. Take care x c ... View more

Oh well done jo43 .. That's brilliant ... View more

Hi lulu and welcome . Crikey you have been through it and some .. You must know quiet a lot about this breast cancer . I am only just begining this journey along with so many other newbies in the stars and I for one will welcome any tips and hints for chemo and rad treatment .. I know a cure cannot be that far away now so let's pray its in our lifetime .. I had my ct scan today bone scan tomorrow and onc Monday .. Good luck to all who are about to embark .. My thoughts are with you. Pauline ... View more

Hi beam67 It's tough isn't it with kids of a certain age. I am not sure if it gets really real until they see external signs . Myn have been brilliant but I went in for a mx and ANC and they visited in hospital and one does work at a hospital but I think we all have ways of dealing with the news and they might just need time to get used to things . Perhaps chat to your BCN or there is a PDF download leaflet on this site about your relationships with people around you. I'm sure they love the bones of you and will sort through it with you. Love and hugs ... View more