Breast Cancer Now Forum

Thanks for the hug Sue. I had chemo (EC and Paclitaxol) before rads. I think I am doing ok on letrozole apart from some irritating hot flushes but I am VERY creaky in the morning or when I have sat for a while. Not sure if it is the letrozole/herceptin/zometa but whatever I feel like a really old lady when I get up. Am now taking cod liver oil capsules just in case they help and am planning to take up Pilates and get back to swimming (in fact my very jazzy aqua knitted knocker arrived today) - who knows what will help but got to be worth a try? All ideas gratefully received! I have a follow up with breast surgeon at end of Jan so guess I will hear when my first mammogram is then. Will be a year since diagnosis in April. Do we ever get told we are in remission or is BC so evilly hard to detect as it can appear anywhere that they darent?  ... View more

Hello Sue and Ann   hopping on the thread to share. I too finished rads just before Christmas and feel like it's a turning point. Still having herceptin jabs every 3 weeks till June and letrozole for years but pleased the biggies are over and done. Very pleased to have 5 o'clock shadow eyebrows and that my white fluff hair is thickening daily. Am feeling positive about the new year and determined to pack it with fun and happy times ....... but am also terrified that the cancer will recur. I have a looming feeling that I can't shake off that my life will be shortened by recurrence, whether it's in 2/6/10 years. I feel a pressure to make big decisions about my life so that I don't have regrets on my deathbed and I have a list of music I want played at my funeral and I am updating my will. I don't talk of this with my hubby or friends because people just poo poo it. But it is very real to me. Determined not to let it overwhelm me and am hoping in time it will fade away. I miss my old life, the simplicity and positivity of believing all was well and a life plan that was straightforward. I mourn the loss of my boob and my damaged veins. Sorry for being morbid - I am really ok but just beneath the surface lurks a bit of blackness. X ... View more

Hi Amanda   i am an E cup and had a MX on 1/6, no reconstruction. I was referred for a DIEP flap reconstruction at the same time but it was taking ages to arrange and I was worried that the potential complications could delay chemo starting. So I opted for straightforward MX and recovered really well. Had a seroma which was drained once then was reabsorbed but was feeling good after two weeks and able to start chemo at week 5. I did all the exercises religiously and have always had a good range of movement. My scar is a bit tighter after radiotherapy but hoping this will settle.    I am pleased that my treatment was not delayed at any stage and I have got used to having just one boob but I don't like it. My prosthesis is really natural looking so externally no one would know but I do. I am not sure I can face any more surgery to have a delayed reconstruction but there is no rush to make a decision I guess.    Good luck to you. X ... View more

Another vote for Holland & Barrett 99.9% Aloe Vera. I used it throughout and have had no skin trouble at all. Very cheap too!  ... View more

Hi Leigh just wanted to reply to your Letrozole concern. I am on this and am also having infusions of  Bisphosponates (Zometa) every six months. I am having this despite my bones being very good as, in post menopausal women, it is protective against developing secondaries in the bones and really should be offered routinely to all post-menopausal women on hormone treatment (the only reason it isn't is due to the lack of a decision on who should fund it). I have posted links in the Hormone section - do take a look and if you feel it is a good idea do push your team to prescribe it.    I have been on Letrozole for three weeks and so far am doing ok. Have a few more hot flashes and creaky bones every morning but has these before so can't blame just the Letrozole.   hope you get sorted. X ... View more

Hello everyone  just checking in - can't believe it is six weeks since I finished chemo and four week since I started phased return to work! The time has flown. I have my final radio on Monday so the end of hospital visits is in sight. Yay!!    Radiotherapy is a breeze compared to chemo. I have been lucky and had 8.15 slots each day so easy to park and in and out in a flash. Skin is doing really well too. Onward - withdaily Letrozole tablets, three weekly Herceptin jabs and six monthly Zometa infusions - to a brilliant 2017 for all of us! XX ... View more

Oops! That's so funny - meant to write 'teen' children, not 'tenn'!! Just have two teenagers - thank goodness!  ... View more

Just wanted to add a different view to give you some hope. I finished 18 weeks of EC-P three weeks ago and led a pretty full life throughout. When I felt ok I went to the cinema, theatre, shopping, restaurants, cycling and even caught the bus every now and then. I used antiseptic hand wipes a bit but otherwise did nothing special. I didn't ask my tenn children or hubby to do anything different. Whilst I could tell my defences were low (skin rashes and a drippy nose) I never succumbed thank goodness and I was well enough to have every treatment as planned. Hope all goes well for you.  ... View more

Onto the next for all of us! I saw Rad cosultant on Tues and have planning appt on 21st prior to 15 treatments. Starting Letrozole soon too. Ongoing Herceptin and Zometa too. It's certainly not over but am sure the worst is - SO pleased to be finished chemo, especially today as for the past nine weeks I have lost every Friday through the weekly treatment, then felt out of sorts for four or five days. Best of all is having my Hickman line out. It was a godsend for treatment but a hassle to live with. A little trio of scars to join the large red brute that crosses my chest. Hope they all fade with the memories!   I am am troubled by an itchy rash on the outer elbows and each calf. It flares up every now and then but has persisted for three weeks. Asked pharmacist for advice and was told to treat the symptoms as it is probably chemo related but I'm not convinced. Minor niggle in the great scheme of things. Anyone else had the same?  ... View more

My lovely daughter (aged 14) is very squeamish so I was dreading telling her that I was going to have a mastectomy. I was very surprised when she took the news in her stride, saying 'it's not like you need it anymore cos you're not going to have any more babies' !  I took it in the supportive manner it was intended. ... View more

Hi Vintage   last one today!! So pleased! In answer to your question I haven't had a build up of SEs with Paclitaxol - they've been the same throughout. As always I come home from treatment and go to bed to relax, maybe snooze due to piriton, then get up for a small portion of a hearty tea then chill till bedtime. Tonight I made it to book group for a couple of hours which was fab. Ready to sleep now. Expect that over the coming days I will gave mild queasiness every now and then, relieved by a ginger nut, and possibly a bit of an upset tummy. That is it. For me, a dream compared to EC.    Hope ps you find it equally bearable!  ... View more

I had my last chemo today! SO pleased to have two treatments ticked off, and the two big ones too - MX and chemo. Just four more treatments to go - radiotherapy,  6 more Herceptin jabs, 5 more Zometa infusions and Letrozole for ages. Who knows what lies ahead but for now I am just happy to be here.   hope you are all managing the SEs ok and enjoying your weekends.  ... View more

Hi Vintage i haven't had a change but have had ECx3 then Paclitaxol weekly x9 (last one is tomorrow yay). The Paclitaxol has been very manageable, with just a few upset tummies and a vague nauseousness for a few days - nothing like the hell of EC 3! I have  been so well I felt a bit guilty as most of the others on the July starters thread are/were having a hideous time on Docetaxol . Hope that helps. ... View more

Thanks Helen and Sar - interesting that you could have 6-8pm slots Helen! That would be good for me so I'll see what is possible when I go for first consultation. Just want it all done before Christmas so I can start 2017 with fewer appointments! SO fed up of hospital journeys/waiting/treatment!  ... View more

Hello all   I am just finishing chemo and have first appt with radiology consultant on 8/11 so guess I'll be. Dec starter - really hoping they'll fit my three weeks in before Christmas.    Reading your posts I note issues re appointments being on time that are making me worried that my plan to fit radio around work might be problematic. I hoped to be able to arrange first or last appts each day so there is least disruption to my working week - has anyone managed to do this and made it work?    Many thanks ... View more

That's great Snowydog - good to hear it is part of the offer in your hospital. Hoping this is the same for others too.  ... View more

Here is more info - http://breastcancernow.org/news-and-blogs/news/27000-women-being-denied-43p-osteoporosis-drug-that-can-prevent-breast-cancer-spread. Looks like I have found my place to campaign!  ... View more

Hi Lily59   if this article is right http://www.bbc.co.uk/news/health-37432935 it does seem to down to who is going to foot the bill. Health investment for an area is given via a variety of routes - through Public Health England, through NHS England and through Clinical Commissioning Groups (I work in the latter) - so plenty of opportunities to pass the buck on decision making. Where people are getting Bisphosphonates I suspect the hospitals are absorbing the costs as they are paid an agreed price for every patient contact by CCGs or NHSE depending on the type of care. Where people aren't getting them the hospitals will probably be waiting for the costs to be funded - either as an additional payment or for the price to be increased to cover the costs - and it could be a long wait. I will rummage around and see if I can find out any further info.      ... View more