Breast Cancer Now Forum

Hi everyone - Happy New Year 🫂🥰 Gosh, I can’t believe I last posted here back in November 😳.   It sounds like we are all making changes and ‘getting on’ with life post treatment, so to speak. @maggiemoo yes, I started Abemaciclib at the beginning of December and had issues with my stomach right from the off.  I have posted on a different thread for Abemaciclib - early breast cancer.  Stopped and restarted on a lower dose after a few weeks respite, so far so good (ish).   The really good news is that my mammogram result came back clear and my peripheral neuropathy has gone away.  Oh, and my eyelashes have grown back (yay).  However, I am suffering with some cording in my arm (treated side) again.  Not sure why but doing my exercises regularly.   I generally feel up beat most days and allow myself some off days - i feel it’s par for the course with all that has happened over the last year.  Today is my one year anniversary of the surgery to remove my tumour - where has the time gone!  A few bubbles are in order this evening I think 😁.  With a few projects planned and my son’s wedding in July, I have enough to keep my mind off ‘other’ things for the moment but it is hard not to lapse into the ‘what if it comes back’ thoughts.  Anyway, may all your new journeys be positive ones.  We’ve got this!💪🏻🥊🫂   ... View more

Hi again……. 🙂 it’s been just over a month since last posting.  I’m glad to see that more of us are being offered Abemaciclib.  I have struggled with the initial daily dose (2 x 150mg).  My poor stomach had a terrible time 😔.  I was classed as having Grade 3 reaction to the drug, so stopped, recovered (minus 6.5kg 😁) and am now about to commence on the next lower dose recommended.  Fingers crossed, it makes a difference, as it can only be reduced once more after this.  I didn’t loose any hair except my eyelashes, which are now growing back.  Went off food generally, hence the weight loss.  I have been advised that if I have the same reaction on the lower dose then Abemaciclib treatment will be stopped!  Please don’t let my update put you off - that is not my intention.  I think everyone reacts to drugs differently.  I found EC easy and Paclitaxol harder 🙄.   Apparently, I am the only one receiving this drug at my hospital that has had this reaction to it…….. Keep us posted on how you are doing on Abemaciclib.  I will update you once I’m into my next cycle. May any SE’s be minimal 🧘‍♀️😘 ... View more

Hi @Steph J  Lloyds Direct 🙂 All the best. ... View more

Hi I was using Babe Lash before diagnosis and had lovely long eyelashes.  Unfortunately, the chemo treatment I had, EC and Paclitaxol, meant I would definitely loose ALL my hair (and I mean all), so I saved my money and started again post chemo treatment.  Now I have lovely long lashes again and on the plus side, amazing eyebrows.  For some reason they have grown back quite a bit darker than before.  Every cloud and all that…..  Oh, and I finished chemo mid August.    I hope that helps.  All the best. ... View more

Hi Not sure if this helps anyone trying to get a specific brand of Letrozole.  I did a lot of research comparing the Letrozole ‘generics’ ingredients to the original Femara on the drug database website.  Nearest was Accord brand.  I asked my Oncologist to prescribe this specific brand, which she did.  I went to my Pharmacy and they had to order it in, stating that they might not be able to get it next time!  So, I set up an account with one of the big online pharmacies that deliver your prescriptions (not the NHS one).  It’s very straight forward.  As my repeat prescription specifies the exact brand, that is the one I get every month, delivered free and on time.  Perfect!  The key is that your prescription MUST specify the brand required, otherwise you will always be given whatever generic is available at the time and the ingredients vary tremendously.  All the best. ... View more

Hi there Lovely to hear from you all. I’m now on day two (first cycle), woke up at 3:30am with serious diarrhoea!  Ho hum….. straight onto Imodium.  Stomach cramps this morning.  I will get OH to pick up some Buscopan (thanks for the tip 😅).  Otherwise, everything else seems good.  I too am a little concerned re the hair loss SE reference now that I have a pixie cut. What will be, will be.  I have decided to keep a daily log again, so that I can refer back when I see the Oncologist.  I have a brain like a sieve sometimes or underplay symptoms 🙄.   All the best everyone.  May we all be relatively SE free. 🫂 ... View more

Hi all Well, another month has passed.  I hope that you are all doing well.  My small update is:  Starting Letrozole - absolutely no side effects (one month in) and on Accord brand. Abemaciclib - not started yet as there seems to be a complete disconnect between the hospital and the pharmacy.  It’s a joke tbh!  Speaking to Oncologist this week - think she might be a bit surprised I haven’t started it yet.  Ho hum…… The one thing that I have suffered (prior to starting Letrozole) is serious neuropathy pain in lower limbs and feet.  I suffered peripheral neuropathy on Paclitaxel, which resUlted in my dose being reduced. Now on Pregabalin - what a wonder drug!  I can walk properly again and sleep without pain. Apparently, this is a side affect post chemo which can last between 3-5 months following chemo/radiotherapy treatment🙄.  I love how the Oncologists don’t tell you this might happen.   Anyway, feel lIke I’m back to the ‘new’ me now. Onwards and upwards.  Take care everyone. Hugs 🫂   ... View more

Hi Kitty123 Thank you.  I can cope with the diarrhoea aspect as I had the same SE with EC.  Imodium became my new best friend.  It’s comforting to know you aren’t experiencing any other SE’s.  My Oncologist wants bloods done two weeks before starting and two weeks after, then monthly, which is different to what Lilly recommends.  I will revisit this at my next appointment.  If you get time, please keep posting on how you are  doing on this drug.  Thank you again. Take care. ... View more

Hi all I follow a Breast Surgeon on Instagram who has had BC twice.  She has now retired and makes it her mission to myth bust and gives good advice, along with evidence backing up her research.  She posted a site in the US that has a database full of details around herbs and contraindications with drugs (along with a host of other useful info). https://www.mskcc.org/cancer-care/diagnosis-treatment/symptom-management/integrative-medicine/herbs You can really look carefully at what supplements to take before spending lots of money and whether it will stop the effectiveness of any drugs you are already taking.  A pharmacist and botanicals expert manages and continually updates the database with assistance from other MSK Integrative Medicine Service experts, providing you with objective and evidence-based information that can be helpful in judging a product’s: traditional and proven uses potential benefits possible adverse effects interactions with other herbs or medicines It’s well worth a look. All the best. ... View more

Hi Yes, just completed whole chest and supraclavicular RT (10 days ago).  Lovely and brown but now peeling slightly on the boob where I had boosters.  No skin reaction in the collar bone area.  No pain, just slightly itchy.  Continued to wear bra and / or crop top (need support).  Used Biafine (specifically for radiotherapy and burns) twice daily.  Hope that helps. 🤔 ... View more

@maggiemoo it certainly sounds like we are in similar ‘journey’ (hate that expression).  It would be good to share Abemaciclib experiences as time goes on.  My Onc has said that it can be stopped at any time or dose reduced if SE’s a problem, which is some comfort.  The info provided reads like it’s being on chemo for another two years 😔.   I too have/had downy facial hair and the JML Flawless Facial Hair Remover (shaver) is perfect for the job 👍. Ha ha, hadn’t even thought about passport photo and looking very different.  I’m sure the facial scanners at passport control reads your face rather than the hair style - let us know how you get on and have a lovely time in Guernsey with your family.   @ML2022 Thank you for the tips and things to watch out for post RT.  At the moment I just look very tanned on my left side and neck and a sore nipple!  I will keep slapping on the moisturiser.  I’m very tired though, not sure if it just the sudden stop to daily hospital visits or as a result of RT.  Also, welcome to the very short hair club.  Mine is about 2 cm long now.  I did buzz it a month ago because I looked like a fuzzy peach and it was growing in all directions.  Now it’s back to being as straight as it was before, only white 😳.  I have been told that it looks like a style - kinda short pixie.  There is a race on with my baby granddaughter to see who has more hair in a years time!  I think she may win….. 😂 Take care all. 🫂x ... View more

Hi all It sounds like we are all doing reasonably well considering, which is lovely to read (hear).  I had my last RT session (X18) today - whoop, whoop.  It was probably the least worst treatment tbh.  Everyone keeps telling me I look so well!  I think it’s the suntanned look that’s doing it 😂.  Had a CT scan and DEXA scan a couple of weeks ago, in prep for the next stage.  I did have to push for the CT scan though.  Having been offered Abemaciclib along side Letrozole, I pointed out that I have gone through a year of treatment (surgery, chemo and RT) and I have no idea if any of it has worked and now they are offering me a new drug for Primary Cancer at high risk of reoccurrence (having ticked all the right boxes🤔).  At my RT review this week the radiographer hadn’t heard of Abemaciclib, so couldn’t advise if my recovery from RT would be affected or not😳, which was slightly disconcerting.  I’m seeing the Onc next week for results and prescriptions, so It will be interesting to see what the care plan is going forward.  Pre the Abemaciclib offer it was a case of being handed back to GP care and a yearly mammogram for 5 years.  Not so sure that will be the case now.  I know all our treatments are different, but I do feel like a Guinea Pig sometimes.  Does anyone else feel this way? Anyway, it’s always good to see your updates and how you are all doing.  It stops me feeling so alone. Take care everyone. 🫂xx ... View more

Hi Caz1960 Just popping over from the March 2022 group 👋.  I recently asked the exact same question as you.  I will be starting Abemaciclib in October alongside Letrozole.  Oncologist said I fit the criteria (like you) and held off starting me on both meds until after my radiotherapy; 3 down 15 to go!  Chemo finished in August.  Onc also said that it gives an additional 4-6% OS rating and the trial papers appear to back this stat up.   It’s a bit daunting when the SE’s listed appear the same as Chemo though.  Happy to keep in touch.  Feel free to PM me. We’ve got this 💪🏻. ... View more

Hi everyone Well, it’s a month since chemo finished and I’m beginning to feel relatively normal again.  @ML2022 I seem to be the opposite to you re brain fog - mine has definitely cleared.  Please talk to you health team and see what they advise.  Obviously we have all had different drugs, so it could still be a delayed SE.  Saw the Oncologist yesterday and she has recommended that I take the ‘all singing, all dancing’ (her words) new drug Abemaciclib along side Letrozole once my RT has finished.  Are any of you lovely ladies taking this drug or about to? I’d be interested to know.   My port was removed yesterday and I am sore today.  It served me well and I will miss it, sort of!  I really hope you are all doing well, as well as can be expected.  I do keep up with postings on here but life takes over………. Keep safe and well. 💪🏻🫂   ... View more

Hi I’m about to start Letrozol and have started researching the drug along with reading about SE here on the forum .  NICE (medicinal forms for Letrozole) details the different drugs available and cost.  The most expensive are: Femara - 30 tabs - £90.92 Consilient - 28 tabs - £84.86 Cresent - 28 tabs - £67.89 Dr Reddy’s - 28 tabs £73.13 ALL the other brands listed are pennies by comparison.  Accord is showing 28 tabs @ £2.75. It definitely seems like the lowest (generic) cost drugs are farmed out to us, which quite frankly is disgraceful, especially as they seem to cause the most and worst SE’s, from what is being reported.  I think it’s time to bang the drum and get the best prescribed.  All the best. ... View more

Hi K8 This is a really good site re clean eating and cancer https://www.rebeccakatz.com/recipe-box-menu My little bit of advice regarding changing your diet is to make sure that you are getting all the nutrients/vitamins/minerals, as it is generally not recommended to take these in supplement form while having chemo and RT.  I was ‘fit and healthy’ prior to my diagnosis and generally ate a healthy balanced (less sugar and processed food) diet, so felt that I didn’t have to change much.  However, I’m a believer that there is always room for improvement but didn’t want to impact the family too much.  Always check with your Oncologist / BCN as they may have some good suggestions.  I am coming to the end of my chemo now and have had very few SE’s.   I hope that helps.  All the best.   ... View more

Hi Caz1960 Like you I had EC and then moved to 12 x weekly Paclitaxel.  I was given Filgrastim on round 3 and white cells went sky high with serious bone pain in lower legs.  Onc decided to monitor my bloods rather than give me any more Filgrastim.  So far, bloods remain normal and I have three rounds to go……..  I’m happy 😁💪🏻. All the best. ... View more

Hi everyone I haven’t posted for a while but have dropped in to catch up on progress regularly.  It is good to see that we are all coping reasonably well considering….. I have just 4 x Paclitaxel to go, so end of chemo is in sight 😅.  I have had relatively few SE’s over the course of treatment and feel very lucky.  I can’t sing Polybalm’s praises enough.  All nails bar the one toe nail have remained strong and healthy.  My hair (white peach fuzz) started to grow back two months ago but I fear I may be shedding again since being on the PAC, which is to be expected apparently 😳.  I went on the Hair Loss, Scalp Care & New Growth Virtual Workshop at Look Good, Feel Better (book online) and the lady running it is very knowledgable and scientifically trained/qualified regarding hair / hair loss / regrowth.  She busts some myths and recommends many (cheaper) products to use.  Seriously, don’t waste your money on lots of products making claims to help regrowth, thickening etc.  She explains why very well and answers all your questions.   @KimPa welcome to the group. We seem to be on similar treatment pathway timings.  I have appointment booked to see the Radiologist in a couple of weeks.  I’m interested to see if they are going to recommend the 3 weeks (15 days) RT or the 5 day RT.  I have been doing my research and the resulting outcomes are the same.  It has now been approved by the NHS as the recommended approach.  I’m looking forward to the discussion with my Radiologist.  Has anyone in this group had or is having 1 week of RT?  It would be good to hear your experiences.  This week I went to see a Lymphodema Specialist Nurse as I had some numbness in my arm, back and ribs. I thought it was a SE of the Chemo but the Onc said not and referred me.  The nurse was very good.  I came away with exercises and self massage techniques to help the drainage and they work! Yay.  I just have slight numbness in my armpit now, which is where I had full ANC.  I felt a bit of a fraud as the difference in size comparing both arms was 1cm, but she said it was good to start the process earlier than later so the numbness doesn’t worsen and cause other issues (Cellulitis).  Phew. Anyway, I’ve prattled on enough.  It’s been good to catch up with you lovelies.  We are beating this 💪🏻.  Keep strong.  🫂   ... View more