Breast Cancer Now Forum

Happy new year everyone. This year has flown by. I hope your best days of your lives are still ahead and maybe even this year. I finish treatment in March (Kadcycla) so prob the last to finish. Getting bored of feeling tired and a bit icky but has not been to bad at least I can work. Now listening to Higgi I think I got off lightly. Can t belive the rotten luck you have had through this. I hope this op sorts it out for good and you can put it behind you, and start exercising. Hope everyone is doing well and retirement to Scotland sounds great.  I think a good legacy for me through this is - I have cut down on wine and am doing more cycling and enjoying  5k your way at my local park. I am quite  weak having been on chemo so long but every bit counts. You definitely feel better doing exercise especially when tamoxifen side effects buggers your sleeping up. Xx 🥳 😘         ... View more

My reasons were the nhs nice guidelines recommend kadcycla for people with residual tumour after chemo before surgery as there was some research to show it is better.  But it all depends on the type of tumour receptors etc. ... View more

Hi my story is a 1 mm residual after with lumpectomy surgery and chemo presurgery. I swapped to kadcycla post op as the science papers shows  it is better though do your own research.  It was only approved for primary breast cancer last year it used to be just for secondaries because it was so expensive.  You only qualify if you have residual after the first line of treatment. My hair has grown back while on kadcycla and I feel OK am working full time I have a bit of neuropathy though not to bad       ... View more

Hi Kit kat I am am triple positive and on my 5th cycle of Kadcycla, on tamoxifen for       (milpharm) for 3 weeks.  It is a raw deal as you have to have everything and a much longer chemotherapy treatment. I still need more time for tamoxifen levels to build up so am having trouble sleeping but not to bad. I am 51 so was perimenopausal, so may be not such a shock for my body oestrogen levels were  lower before. I have done lots of research as I work full time and am worried about been able to do my job. 25% of women stop tamoxifen so your team should take it seriously.  Things can really improve after a year as your body adjusts to lower oestrogen. Can you bear it for a year? If you search on utube for low tamoxifen dose an Italian oncologist did some research to show 5mg is as effective as 20mg with less side effects. This was for DCIS and not invasive cancer  so you could ask your oncology about reducing dose for a while. Good luck hope you find a solution. Xx     ... View more

@Karden there has been grey hair on the red carpet. Looks like grey is the new blond. Mine is a nice silver grey with a bit of salt and pepper. Am going to save a fortune in hairdressers. I hope it stays this colour. I still don t taste food properly must be the Kadcyla. It can be a waste of money going out for dinner some days. I got a letter from hr this week saying they will pay for time of for apointments and treatment but want me to make the time up. No mention of the 5 years of long hours before my diagnosis. So you get compassion for 6 to 9 months then eveyone gets bored and thinks you should be back to normal/ocer it. Love to all.     ... View more

4 days 11 to go it is fine but side effects of fatigue and red/ sore skin should arrive middle of next week if they are on time. 😄 ... View more

Just hanging around for rads they seem to have an issue with the machine. I quite like my silver grey hair so will leave and may add streaks at a later stage. Funny how it grows at different lengths. Am desperate to ditch the wig but not keen to sdvertise my health issues with clients at work. Soòooooo looking foward to starting tamoxifan am leaving it until the end of rads now. Next week is very busy rads,bloods and kadcycla. Hope everyone is feeling good.   Xx      ... View more

My oncologist told me it reduces secndaries in the bone, cancer survivors have a  higher rate of falls ( not sure why maybe nerve damage) so you will be at a higher risk of a fractured neck of femur. Generally I think it is a good idea. ... View more

@Karden Congrats hope you have a bell to ring. The hair comes back quick I have half a cm and gone completely grey though. Just use a wig for work now. ... View more

You should be fine a walk in the park after what you have been through. I start rad for 3 weeks on Monday. Breath holding was fine and arms not at full stretch.  Was fine with my cording.  They set breath on 80 % of your biggest breadth so go for it to protect the heart. I just had a lumpectomy.  Hope everyone else is doing well. I am ticking along. Anyone else on Kadcycla? seems to be making me very tired worse than previous treatment. I guess might be the build up. Roll on February. Nealy there @higgi looking forward to clearing the rad hurdle. Am going to start tamoxifen at the end of my rad. Oncologist is giving me the choice not in a hurry to start that. Love to all. 😘     ... View more

Hi all An upbeat general vibe on the jungle drums,   I guess it feels like we are coming out the other side. @higgi  great news it was such bad luck , I expanded my cording exercises with some UTube advice videos that seemed to help. @PaulineS27  fingers crossed no radio that should be the plus side of going through a mastectomy.   My cording is very stubborn doing the exercises but I have full range of movement so not to fussed.  My tumour bed and lymph nodes were all removed from the same wound under the arm.  My tumour was very close to the axilla hence two nodes pre chemo.  I have had virtually no pain but I think my arm and axilla are all numb.  The surgeon thinks the numbness will go over time, the surgery was very difficult so think I was pulled about a lot.  Not sure if I should be pleased or worried ………………………..seemed to escape the pain. My RXT starts 5th July for 3 weeks.  I am told due to the Kadcycla they don ‘t want to give me higher dose radiation over a week,  as was hoping for just the week,  as the research seems to show it is just as good.  Well thanks to the postings here am not to worried about RXT just another hurdle.   I guess  more fatigue to come but it all feels better in the sun when you can see people.  It all very routine now scans , bloods. Have just accepted this my life until I finish the Kadcycla next year.  @Woodybird     5 k great idea think I ll wait until after radio it is good excuse.  I am getting on the bike. So frustrating trying to get back my old strength and fitness.  I lost a stone through all this,  must have been the months of diarrhoea so I need to  keep that off.  Weight loss -the only plus side, my skin seems to have improved as well . My hair has come back white so am fed up to the back teeth with the wig,  so I only where it for work.  I am told my the white skin head look is very trendy and is a better look than the  wig. 😊 So glad to see everyone seems to be doing well.  @Karden one more to go so near.  I am doing some glamp camping with girlfriends this weekend, trouble is they have booked wine tasting at a vineyard and I am trying to ensure this big cancer scare means I am healthier and that means less wine 🤔 .  I guess you are supposed to spit it out anyway, seems a waste. xx 😘 ... View more

  Well have been really hit with fatigue since surgery which I was not expecting as a lumpectomy seems much easier to bear than the mastectomy/reconstruction.  Seems to be getting better, I guess I got off too lightly through chemo. I was feeling sorry for myself until I listened to a Macmillan talking book on fatigue. The advice was don 't stand in a shower it is to tiring and use a towel dressing gown so you don't tire yourself out drying yourself. Well I am no way near that bad, so I cheered up.  It is the concentration, decision making and thinking for work that seems to be the biggest issue. People defiantly getting on my nerves a lot less tolerable. @grannyp So I have been quite open as I thought I should have an explanation  for my grumpiness and short temper. 😃  @PaulineS27  glad your surgery went well my underarm was painful.  I seem to have ended up with cording it seems really common, so I keep doing the exercises and Utube videos still a bit restricted. @dipitdee  hope you are felling better not much fun on top of everything else. Starting Kadcycla tomorrow so hoping it is not to bad and that goes on until the new year.  My sleeping is getting a lot worse but I think that is menopause kicking in. @higgi  the Herceptin injection was fine for me.  I think you need to make sure the nurse gives it over 5 minutes and not to rush it especially if you are a skinny one.  I would try once more and say it really hurt last time.  If we give out prizes for the most complications that might be your good self so well done!!!!!!!!!! Sounds like you have been coping amazingly well. The good thing about these chat rooms is you always find someone having a tougher time and it puts thing into perspective and I start to think how lucky I am.  Though I guess the cancer was bad luck - but could have been worse..................... 😉 I guess that won’t work for the person worse off………………………….hope I am not sounding insensitive. We are so getting to the end of this but I think you have to allow months to get back to fullish normal.  Xx 😘 ... View more

@Karden thanks for cording advice will check it out. Not sure I have any yet but it may still happen.  I had no sickness on EC they gave me dexamethasone, endansetron, domperidone and one for three days aprepitant.  The slight horrible feeling was relieved  by small regular snacks. @PaulineS27 good luck for surgery I think you are the last may be- in the December group. @Guest user hope your leak has stopped. @grannyp glad things are getting back to normality I think my general confidance has taken a knock through all of this.  Saw my surgeon  this  week, 5 lymph nodes cancer free though two had signs cancer was there , margins are clear  so no more surgery (thank God) but they found 1 mm of residual cancer, can you believe it so near to full clearance.   At least I have kept most of my axilliary nodes.  Overall a good result from chemo.  I see the oncologist on Tuesday so I am hopeing this will mean I meet criteria for kadcyla which seems less toxic  and even more targetted, fingers crossed and waiting for RXT start dates in 4 weeks.   Hope everyone so doing ok. xx       ... View more

@dipitdee  The Kadcyla is good clever  stuff it was only agreed for primary breast cancer just after we were diagnosed so I would say anyone getting it is a lucky duckie.  A  year ago it was only used for secondaries must be very expensive. What does cording feel like? is it painful or just restricts movement.   I am getting shooting pains with some small movement and wandering if I am getting it.  I seem to have a good range of movement,  ok doing the exercises. Can t advise on drains as did nt get any. ... View more

Sounds promising @higgi glad to hear. My surgery is done and dusted. Feeling very good very little pain. My tumour was close to the  lymph nodes so they managed to remove tumour bed and 5 lymph nodes through one excision under the arm. No drains or fluid. I still have a pressure dressing on  but frantically exercising to avoid cording. Lymph nodes were clear when checked but they want the detailed pathology report. This is good as had two lymph nodes pre chemo.  Hopefully will  collect on pensions after All. 😁 Just RXT left to go oh and a year of herceptin etc. I have hired a watt bike for a  year so on a mission to get back to my old fitness. On the whole recovery excellent but muscles definatly really weak despite yoga and cycling all through treatment in smaller doses  than usual. Love to all I am taking less frequent postings as a good sign, we are moving on but lovely to hear how everyone is doing.  ... View more

Thanks @donkeywoman  hopefully day case but may stay in. Yes I find been with people all day quite tiring. I guess you have to build up your social stamina. It is hard to know what is treatment and what is menopause. I guess you have to pace yourself and don t expect to much, don t be hard on yourself.  Great you are back at work. ... View more

Well no wonder they give us all this horrendous treatment it seems to do the job. Great news @higgi  just need to the sort the bloody duct thing but that is some news to pep you up and keep you  going. 🥂 @PaulineS27  how are you? You must have had your surgery by now? Hope you are having a speedy recovery. @Karden  I do feel for you back in chemo land at least you know you can do it and will be through the other side. So near the end. @Pyewacket Glad radiotherapy is going well it sounds most peeps have found RXT not to bad which is great news I am not worried about that bit now.  I don t live to far from the centre which is a huge bonus. Well I have enjoyed my treatment mini break,  under the knife on Monday but fairly minor,  compared to others.  I have a mind to tell my surgeon to watch out for the thoracic duct when she takes out the SA nodes.   Still can t taste much so that must have been more herceptin rather than taxol.   Stomach still not right.  Slept through chemo but now the medically induced menopause has really kicked in so sleeping really badly going to put of drugs until I get  realky  desparate. Hope everyone is doing well and  roll on some good weather. Xx   ... View more

@higgi   really sorry to hear that, you seem to have had more than your fair share of complications. ☹ 🤞 . Really hope it resolves with the pressure bandage.     ... View more

@higgi  what a nightmare junior docs are still training so that sounds totally inappropriate and distant lack of specialist knowledge that should be completely disregarded really was the last thing you needed. We have a 24 hour nurse help line for the Marsden, you might have something similar.  They can help bypass a/e as waste of time. I am having lumpectomy with SA node removal and query full axilliary dissection depending on histology in theatre. So getting off lightly for surgery though as we are all learning plans change. Hope you get some reasurring advice soon difficult over a bank holiday. Xx           ... View more

@higgi well done biggest hurdle cleared.  Wishing you a speedy recovery. Niamh My hair is coming back white but just a short fuzz. I was given a present of Grow Tonic by Umberto Giannini I keep slapping it on but have no idea if it makes a difference.  It includes caffeine and pea sprouts so you could make your own. I recommend a "tapping" app. It is the only mindfulness/ meditation that works for me. It includes tapping on acupressure points and is very physical.  I definately feel anxiety levels going down after a session. Anyone lost a nail having finished chemo, a couple of the toe nails looking very dodegy.  Now just on Herceptin and Perjeta and really hoping most previous side effects were the taxol. It would be great if the diarrhoea stops. I am feeling better with more energy. 🤞 @Karden Will definately be doing post op exercises.  I think they might help prevent cording. Last thing we want coming out of this journey is s frozen shoulder.  I have 2 weeks treatment free now until surgery just a pre op meeting so hope this heat wave comes soon and I can recharge the batteries  before next hurdle. Bye for now. Niamh Xx ... View more