March 2022 Chemotherapy starters

[NickyC75]

Hello ladies,

It is so lovely hearing from you all. @ML2022  I am really sorry about your break up; I can’t imagine how hard it is for you. It sounds as if you are being really brave and making lots of positive plans with friends and family. 

@maggiemoo I hope you are feeling better. It sometimes feels as if we can’t escape breast cancer. Everytime I think I moved on, something brings it back to the forefront. 

My sister has found the waiting the hardest. With it being over Christmas, everything has taken longer. They have performed biopsies, then a vacuum biopsy, then she was ready for surgery but at the MDT they wanted another vacuum biopsy. Her appointment with consultant is not until 31st Jan, so hopefully mastectomy shortly after. 

I accompanied my sister to her biopsy on Wed. I had noticed quite a large lump had developed on my mastectomy scar. I thought it was scar tissue but when I was in the breast unit I asked a nurse to ring me. Amazingly, they had a Dr available to check it there and then. He said I would need a scan, which they could do immediately. Of course, I was back thinking it was cancer but was trying to be brave for my sister. They did a scan and found it was a huge pocket of blood (took 4 huge syringes to drain) caused by a trauma. I have been playing a lot of tennis (now I am unemployed) and I had really banged it on the corner of the table whilst trying to stop our new puppy from jumping on my son! He checked underneath and my armpit. All seemed clear. It gave me such a shock! 

I had been so long in there my sister thought it was bad news and was so worried for me. I am really grateful they could sort it out there and then.  

I am organising a black-tie ball on 13th Oct this year to raise money for the breast cancer unit (you are all welcome if you fancy a trip to the North-East) and doing the Great North Swim (I am really not a swimmer).  Since leaving work, I feel like a new person. I feel I have found myself again. I will get a job in the forthcoming months and have already been offered three different schools, but I want some time for me. I am taking legal advice too about how I was treated, as I strongly feel I was discriminated against because of my cancer.

I am still on Herceptin, and not sure if it is chemo fatigue or from Herceptin, but I am tired a lot. By the afternoon I seem to have no energy. It is probably the stress, worry and sleepless nights catching up with me from the last year. Playing tennis nearly every day, which I love, although I need to be careful I do not cause another seroma. We have a new puppy called Pepper (a sprocker) so she is I’ll keep me active.

Sending you all my love and best wishes,

Nicky 

[MLT21]

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!💪🏻🥊🫂

[jules_n]

Hello ladies, and Happy New Year to you all. 
I’ve also been finding this time of adjustment and “moving on” to be quite difficult. After a whole year of treatment, making plans and being motivated is such a different mindset! But our first holiday is booked- a ski trip to Austria at the end of this month.
The lump on my neck, which was removed at the end of 2022, turned out to be benign and unrelated, so that was a huge relief. 
I also have restricted movement around my shoulder and chest @ML2022 which sounds very similar to you. I’ve kept up all the exercises and swim regularly too, but it definitely seems to be a result of the radiotherapy. That was sad news about your break up, but wishing you all the best for your newly single life. 
Sending love to all of our March group, thanks for the updates @Sunshinesonia and @maggiemoo 

XX

[Sunshinesonia]

@maggiemoo Happy New Year to you too. Totally understand your feeling anxious for your first mammogram. I was more nervous opening the letter and reading the results thankfully it was good news and I hope 🙏 you have the same. 

That's good you have a holiday booked, something nice to look forward too. We all deserve a better year after everything we've been through. 

Hope everyone else is keeping well. 

Sending lots of love to you all

Sonia x

[ML2022]

@maggiemoogood to hear from you. I'm really sorry you're feeling low. I also find it harder to stay positive now than during treatment because, like you say, it was good to have something active to do about cancer. Booking your vacation is a positive step! Everything we do to resume a normal life is healthy, I think. Now that I've been a year around the calendar since my diagnosis, and I've had my first mammogram (normal!), I'm trying not to think about recurrence. I'm trying to stop thinking about cancer at all, actually, and approach my life without that backdrop. If I get it again, I'll treat it again. But right now I'm healthy, and I want to feel that way.

I do still have what I think is an after-effect from radiation: I'm having bad muscle tightness in my shoulder and across my ribs, and my arm is harder to use - and I started physical therapy for it this week. It's only on the radiated side. Is anyone else having this?

My husband and I separated in November after 30 years together, we just couldn't work things out. I'm trying to put a mental divider in my head between last year and this year, and move on to a better life this year on every front. I've concluded lately that I need to get out more and have signed up for some new activities: a book club, a hiking group, and a writing group. My sisters and I are planning a trip together for next fall. I may take myself somewhere sooner, even if it's just to the beach for a week when the weather warms up.

@NickyC75I hope your sister is doing okay. Has she started any treatment?

Love, peace, and better times ahead to us all!

[maggiemoo]

Happy New Year everyone hope it's going to be kinder to us all, 

I am feeling a bit low now the Christmas period is over and anxiously waiting for the end of February when I get my first mammogram and hopefully a good result. I have been in Leterazole for a few months now and not finding the flushes too bad, better even on the Accord brand which I am going to ask the pharmacy to give me. I start abemaciclib today, I think one of you said you were on this, how is it going? I have signed up for the moving on course in February so hope that will help me cope with the stress of the waiting again, I was much better when having treatment because it was a positive step in hopefully  the right direction. I also am going to see the lymphoedema nurse as I seem to have some in my upper arm

Hope those of you who were having tests before Christmas got the best results. 

I booked a holiday in the Outer hebrides for first week in June, should have gone last year, trying to stay positive and have something to look forward to

Lots of love to you all x

[maggiemoo]

Hi @NickyC75  sorry to hear about your sister hope she gets treatment very soon and please wish her the best from us. Do t blame you giving up your job, my kids are all in senior teaching roles some in special schools and I k ow how tough that is without the challenges we have had. Your not crazy not unless we all are ! 

@Sunshinesonia 

@jules_n 

Hope your tests give you the right results. I have finished radio therapy and my  chest is beginning to settle down, wont get a mammogram till end of February another waiting game. The hit flushes with leterazole seem to be easing. Starting abemeciclib in January 

Hope you all manage to have a good Christmas and enjoy time with your families 

Love to you all x

[Shi]

NickyC75 ❤️ so sorry to hear about your sisters diagnosis ❤️ we’re here if she needs   Bcn ❤️ yes definitely ask the question about the genetic testing and also about getting any daughters on early screening too. ❤️ well done on making decision to leave your job, do what makes you happy and enjoy every day ❤️ make each day count ❤️ so many times everything is work, work, work and before you know it years have flown by and then you have the shock of bc diagnosis and it can make you reevaluate everything ❤️ so do what makes you happy, do what makes you smile ❤️ do all the things you may have put off ❤️ enjoy each day ❤️ the knots in the ball of wool do disappear ❤️💕💕✨✨Shi xx

[Sunshinesonia]

Hope everyone is keeping well.

@NickyC75 firstly congratulation on resigning! I know it was a big decision to make but you've done the right thing. 

Yes had my mammogram last week, now waiting for results should be 2 to 3 weeks! 🫰

Then like you will be every year. 

I'm so sorry to hear about your sister, it sent shivers down my spine and brought back memories of that awful day when I received my news. 

Lucky they caught it early and she has you for moral support. 

Send love and hugs  xx

[NickyC75]

Hello everyone, 

Thank you so much for all of your support, replies and sharing of your experiences - it does help and make me feel not as alone. 

@jules_n  I hope you have had your biopsy results back and everything is ok. You are in my thoughts. Xx

@Sunshinesonia i hope your mammogram went well. I went for my first one since diagnosed on Tuesday. She said she would not tell me if there was an issue as I am under a consultant now and he would have to read the results and it might take 6 weeks!! After a checking the images she said we could go and she said ‘See you next year’ so I am hoping that was a sign she could not see anything sinister on my remaining boob. 🤞 

@Shi , your analogy of the wool is very apt. My wool is clearly got lots of knots in! I really appreciate your kind words and understanding. X 🧶 

I also resigned from my job! 😬 I can’t believe I have done it. I have worked there 20 years! I could not cope with the stress and pressure and having cancer does make you reevaluate. People have said that they can’t believe the difference in me - in a good way. It is scary leaving a well paid job where you are established and secure but I know it was the right thing. We sold one of our cars and that should give me a few months to finish my Herceptin and find something I want to do. I am not even sure if I want to stay in education. I have already been offered jobs, as teachers in my subject are difficult to find, but I have not accepted. Luckily I have a really supportive husband. I am still bit nervous about it all but I feel an opportunity will present its self when the time is right. Maybe I am crazy! 

Sadly, we found out yesterday that my sister has been diagnosed with breast cancer. She is 48. It is nearly a year to the day that I was diagnosed. Our whole family are in complete shock. Luckily she found it earlier than I did. She went about a cyst on the other side. At the minute she will need either a lumpectomy and radio or a mastectomy. She is still awaiting results. Hopefully my experience means that everyone is a lot more vigilant about checking their breasts and it meant it was caught earlier. At least I can support her as I have been though it. Does anyone know if we would qualify for genetic testing now? Two siblings under 50. They did not bother testing me, I assume because we had no family history. We have one other sister who is now really worried. Has anyone had this done? 

I hope everyone is doing well. Sending you all lots of love and support. Xxxx

[KimPa]

Hi all - caught up with the thread. Just wanted to give some virtual hugs to all as it sounds like people are having a tricky time. 

I have continued working throughout (the luxury of a job where I can work from home) but have been going back into the office since just after chemo ended in July. For me it’s the sympathetic head on one side with people asking how I am that I find annoying but most people I work with regularly don’t do that any more. 
I’m taking Letrozole and Adcal-3 (bisphosphonate) and enjoying the hot flushes but luckily they don’t last too long and I can laugh about them. I am finding my knees and ankles ache and can feel very dodgy when I get up after sitting down - they take about 5 mins of walking to ease up. 
I have decided I love my short grey hair so may keep it like this - although it’s going a bit mad at mo with various very curly patches!

But with other friends going through this too, what I have discovered is everyone’s experience and how they feel can be so different. So no one should put pressure on themselves - we’ve all been through a tough year and it will take time for our bodies and minds to recover. Love to you all xx

[Shi]

Nickyc75 ❤️ sending much love and support to you too ❤️ step by step, which is what you are doing ❤️ it can feel like unraveling ball of wool and you come across a knot, you undo the knot and carry on unraveling the wool and come across another knot which you undo too and carry on unravelling the wool ❤️ do what’s right for you like you are doing, in your own time and way ❤️ and be kind to you ❤️ we’re always here 👭❤️💕💕✨✨Shi xx

[jules_n]

I’ve just been catching up with all the posts in the past few days, thanks so much to Nicky for being brave enough to share the difficult  times you’ve been having recently. As you can see from all the responses, we all understand something of what you’re going through. 
I’m retired, so don’t have to worry about work, which is just as well. I’m recovering well physically, but “chemo brain” has taken its toll and there’s no way I could cope with the demanding job I used to do. I’m very forgetful, and anything mentally demanding is a real challenge. I also struggle to motivate myself the way I used to and have become an expert at pottering- actually not achieving much! 
A couple of weeks ago I developed a lesion on my neck, and really feared that my cancer had progressed. It was hard to think about anything else. The nurses and oncologist were also concerned and arranged surgery last week. It was such a relief  to have it removed, but I’m still waiting for the results. I was Stage 3, with a large tumour, so I would say that fear of recurrence is the main cause of my anxiety. Having had such a hard time with chemo, I absolutely dread ever going back there again. 
I take my Letrozole tablet at night, along with a low dose of Amitryptilline, which has really helped with the insomnia and night sweats. 
My hair has progressed from the elderly man’s white fluff to looking like a Granny perm! Apologies to all grannies, myself included! I’m keeping it pretty short meantime. 
Sending my love and support to the ladies who are finding it hard right now, from Jules XX 

[NickyC75]

It is lovely to hear from you @Sunshinesonia . I hope your mammogram was ok. I can imagine going back for one could be really emotional. I think my one is in Dec. 

@Sunshinesonia and @ML2022 , it sounds as if the feelings, emotions, worries and difficulty adjusting to the ‘new normal’ are common. I am sorry and send my love to everyone struggling.

I met my counsellor today, who was great and helped me. I think I am going to resign from my job of 20 years. It is a big decision but I need to cut out stress and pressure. We are going to sell my car, which will give me a few months to get stronger and properly recover, then hopefully I will be ready to find a new, part-time job. Money is going to be really tight but hopefully we can get through it.  I keep apologising to my husband too for putting us in this position. 

I still feel like I don’t recognise myself, both physically and mentally. I hate my short, wavy hair and it still makes me queasy when I touch or see my mastectomy scar. It is so hard as I feel I feel I should feel lucky and positive that I have had this second chance and managed to get through the last horrendous year, and there are times I do feel like that, however, this period is really hard. 

I am sending my love and support to everyone. Thank you for your kind messages and support. I cannot put into words how much I appreciate it and how much help it has given me. Xxx

[ML2022]

Good to hear from you again, @Sunshinesonia! Good luck on your mammogram! Let us know how it turns out. We care.

[Sunshinesonia]

Hello all you lovely ladies. Its been a while since I last posted on hear but have been reading your posts and still following you all. Sounds like everyone is making good progress. 

@NickyC75 hi Nicky just be kind to yourself, we have all been through so much. Also don't compare yourself to others and think you should be at a certain stage just because that other person is, we are all so different. 

I have been doing a phased return since Sept but starting back to work full-time next week. I'm finding work so stressful and people soon forget how you were off and are still recovering even though chemo has stopped. 

I have also been going through different stages of grief, looking back at photos and mourning for the person I used to be. Looking at pics of my journey and how I looked like a cancer patient! It's so hard. 

First time in 20 years I had a bit of a falling out with my bestie, because she couldn't understand why I was feeling like this. 

I had weeks of crying then occupational health suggested I start on antidepressants which I've been on for a month now, and do feel better for taking them. 

I also find myself apologising to my partner as sex no longer interests me and I have no desire for it. 

Its also been a year since I found my lump and next month I have my first yearly mammogram. I'm just praying 🙏 for good news. 

Lots of love to you all

Sonia xx

[Shi]

❤️❤️❤️ everyone finds their rhythm, day by day and step by step in your own time and way ❤️ don’t be surprised if you aren’t as tolerant as you were before and you’ll have a different inner strength that comes through, you don’t realise it’s there but it is ❤️ lots of us have had complete career moves afterwards or done something that we’ve always wanted to do ❤️ it’s early days and your not making hasty decisions ❤️ you are doing amazing even if you think you are not and nothing is right or wrong you do whatever it is you need for you ❤️❤️everyone here understands and gets it ❤️❤️💕💕✨✨Shi xx

[maggiemoo]

@NickyC75 @ML2022 

Oh my goodness I wish we could all meet up and have a bloody good hug

I am so sorry that you are feeling this way, i am more tearful at the moment and dont really know why unless it us the Leterazole, 2 weeks done now of RT and i am having pain in my oesophagus and my skin is starting to itch and i think blister slightly.  

It's hard to stay strong all the time. But @Shi  is right in what she says we have all been through so much this year and must be kind to ourselves,  we are worth it. You are worth it 

Take care everyone  big hugs x

[NickyC75]

Thank you so much @Shi  and @ML2022  for your replies. I cried (as I seem to do at everything) reading them, both with relief but also with heartbreak for the impact cancer has had on us all. I am so sorry @ML2022  that you are finding it difficult too, yet you still have taken the time to write such a supportive, lovely message. Thank you ❤️ I am also sorry about the impact it has had on your marriage. I can understand completely. I keep apologising to my husband for how I have changed physically, emotionally and the changes it has caused financially. It has changed everything. I am glad you have lots of good support around you. 💕 

It does help to know I am not alone in finding it difficult. I see a counsellor, as well as a psychologist, and it does help. I thought I was doing really well until I returned to work - then I just imploded. Maybe I need to reevaluate if I now want to work in such a stressful, pressurised job with ridiculously long hours. It makes me feel angry and sad that cancer is now robbing me of my career that I worked so hard for. I am trying not to react too hastily and then regret stepping away in the future. At the minute, just the thought of work gives me such high anxiety that I feel sick. My sister said last night that she is frustrated that I survived the worst year ever but now work is causing me this amount of upset. 

I am aware, through my counselling, about the different stages of grief and that the process is not linear. God, it is hard! 

I also wonder about the side effects of Herceptin and if I have under estimated the impact. I know the majority of people get through it with no problems, and initially I was fine, but it has definitely got more difficult. When I researched the side effects of Herceptin low mood and depression are associated with it as well as just having treatment for cancer. Alongside other side effects I am experiencing, such as diarrhoea, eye problems, broken nails, fatigue, aching body, anaemia… I am on Herceptin until April. 

Thank you again for your kindness, support, honesty and advice. I really appreciate it. Xxx

[ML2022]

@NickyC75, @Shi is totally right. You have been through so much, and you will keep on getting through it, and past it, in your own time and your own way. We each are experiencing cancer treatment and what comes afterwards in our own ways. I agree, it's definitely helpful to know how my situation compares with others. But it's too easy to judge my progress against someone else's, and it's a false comparison. I haven't found anything about this process to be easy. Some of it has been easier than I thought it would be, but it's all been rough going and slow getting over. You are not alone! Your situation, while different from mine in some details, is completely understandable to me. Therapy has helped me a lot, and so has guided meditation. If you're not already seeing a therapist, or seeing one who is giving you the kind of help you need, please do that or switch.

Physically, I'm doing well and always improving. But I have had trouble going back to work, too. I only work part time and I work alone, so it's not a big deal if I need to stop, refocus, and reset my headspace. I've had trouble focusing in general. My marriage is coming apart, and I don't know how much of that is due to changes in me or if it would have happened anyway. I lean on my friends and my therapist and my dog and my cat and on all of you and on the knowledge that it's all going to be okay. And you will be, too. Peace, time, ease, and healing to you, and to all of us.

[Shi]

NickyC75 ❤️ please be kind to yourself ❤️ you have been through so much and after treatments and everything you are doing a lot going back to work and everything ❤️and crying and feeling guilty is all part of the range of emotions and feelings that can catch you unawares ❤️ please do ring the number on here to speak to a nurse and please use the someone like me option too ❤️ remember to do things your way in your own time ❤️ the jigsaw puzzle pieces of you will fit back together and you will slot each piece back into place in your own good time ❤️ you are still you and still amazing ❤️ so cry, shout, do what you need to do for you and no apologies, you’ve nothing to apologise for, you take your time looking after you ❤️💕💕✨✨Shi xx

[NickyC75]

Hello everyone, it is lovely to hear how you are doing. I hope you are all managing with the side effects and growing stronger each day.

I just wondered if anyone is struggling going back to work? I was doing a phased return but have just had to go off sick again for a month. I returned as my money was about to stop, rather than I felt ready. Mentally I was struggling as I felt to anxious, not sleeping or eating. I just felt I had lost my confidence in everything and found myself crying all the time, which is not good in a school.  On the second week of my phased return I started a very, very heavy period for 9 days. I just felt wiped out, in pain and a mess.

I could not get through to my dr but the chemo nurse rang my oncologist. She said to get checked out by a gynaecologist but she suspects it is a period, which I should not be having. I am on Tamoxifen. I may need injections to fully stop my ovaries. The hospital saw me quickly and I had a camera and biopsies in my womb and a pelvic ultrasound to rule out anything sinister. I am still awaiting results.  I will also have a new appointment with my oncologist, who had signed me off but should not have as I am still on Herceptin. 

Physically and emotionally I just feel I am struggling. When I spoke to a nurse I just started crying. I am been prescribed anti depressants and am still seeing the hospital psychologist. I just feel I have ruined my body, my career and all of our plans as a family. I can’t see how I can go back to my job. 

I was diagnosed exactly a year ago and finished chemo nearly 4 months ago. I thought I would feel a bit better than I do. Has anyone else been feeling similar? 
Love to you all xxx

[ML2022]

@MLT21Thanks for the update. It sounds like things are going well for you overall (except for the botched RX for Abemaciclib). That's great that you got relief for the neuropathy. My onc was pretty accurate about the potential side effects BUT hearing about them and experiencing them are completely different things, aren't they!?! I'm now 6 months past my last chemo and I feel 99% recovered. Maybe even 99.5%.

Onwards and upwards indeed, everyone!

[maggiemoo]

Hi @MLT21 

Just started second week of RT, been on Leterazole for three weeks have lots of hot flushes which they say will reduce in time, I cant take anything for them apparently. Will start Abemaciclib in January,it needs to be started within 3 months of radio therapy did you have RT after chemo 

Coping fine with RT but very tired mainly due to getting up at silly o'clock to get to hospital for treatment

Not feeling bad generally and looking forward to Christmas

Take care x

[MLT21]

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 🫂

[MLT21]

@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

[maggiemoo]

Hi all 

@MLT21 seems we are very similar, just waiting to do the RT after which I will start Abemeciclib, already started letrozole a week ago, feeling dizzy this morning not sure it that is from this or that my hubby has had man flu this week and I seem to have a slight sore throat so might have got something from him. I know what you mean about Guinea pig ,but I am told Abemeciclib has proven good results, I will push for ct scan after RT 

Has anyone got a downy hair growing on their cheeks mine started after chemo ended and hair started growing back, does anyone have tips to get rid of  it 

Also has anyone travelled yet and had problems with passport Phil not looking anything like you, I am going to see my daughter and grandson in Guernsey next week before RT starts 

Hope you all are enjoying some sunshine  x

[ML2022]

@MLT21Congratulations on finishing RT! Sounds like you're doing great! Don't be surprised if the radiation site gets worse over the next 2 weeks, that's what happened to me. The peak worst time was 12 days after treatment stopped. But then it got better fast, maybe within a week it went from worst to okay. Now it just itches a lot. And that breast is still bigger and heavier than the other one, which annoys me but I can't really do anything about it except try to ignore it.

I don't know anything about abemaciclib. I've had really standard treatments, no one offered me anything other than surgery/chemo/RT. Now I'm on daily anastrazole (hormone blocker). I gained 5 lbs in the first week I was on the anastrazole, and it hasn't come off yet but I'm not gaining more so I guess I can live with that if I have to. I haven't had any serious hot flashes from it; I'm post-menopausal anyway so there may not have been a lot of hormones left to block. I finally have enough hair not to bother with wigs anymore. It's still too short for my liking but I'm willing to be seen in it. And I saw my primary care dr for the first time since I was diagnosed and that made me feel like I can live a normal life now-- something about NOT seeing an oncologist after so long. I do feel changed, though. I'll be glad after my next mammogram; I can't help but be a little nervous about it. It's in a couple of weeks. It's a year now since my cancer was found on my last mammo.

Weekend's coming up! Hope you and all the rest of you lovely ladies have a good one. Yes, it helps a lot to know we're in this together.

[MLT21]

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

[jules_n]

Hi again @maggiemoo 

I’ve had similar treatment to you, but no lymph node surgery. Everyone seemed to be happy that the nodes had completely responded to the chemo.

I’ve been on Letrozole, the Accord brand, since mid July, and had my first bone infusion (Zometa) around that time. I had sore, swollen joints in my hands, and aching legs, but couldn’t be sure which treatment was to blame, or possibly a combo of the two?? I took paracetamol and ibuprofen for a couple of weeks and it pretty much resolved after that. I take the Letrozole at bedtime, along with 2.5mg Amitrypteline prescribed by my GP to help with the insomnia and night sweats. Still get aching legs at times, but it’s not too serious, and I  walk a lot, swim, do yoga etc.

I’ve just finished 3 weeks of radiotherapy without any real problems, just a bit tired at times.

I haven’t been offered Abemaciclib, treatments really seem to vary across the country don’t they? Good luck with your radiotherapy, after all you’ve gone through already I think you’ll find it quite straightforward. Hope you don’t have to travel too far every day XX

[maggiemoo]

Hi everyone, just checking in, finally had my clearance, but cancer cells were found in some nodes, now waiting for radiotherapy to start and been put on letrozole, any if you on that and hiw are you managing, when radio therapy is done I will also be put on abermaciclib for 2 years, I also am on a bone treatment every 6 months for 3 years

Feeling ok though and enjoying this lovely sunny day 

X

[NickyC75]

Thank you @ML2022  and @maggiemoo . We are having an amazing time and making lots of special memories. 

Thank you for the tips about the scar. I have religiously used Bio oil on it but just slapped it on every day. Looking and touching it makes me feel a bit queasy but I need to get over it! I will definitely be giving it a go.

I am also getting a lot of downy hair on my face. I feel I am growing a beard! I can’t remember what it was like before hair loss so maybe I am noticing it more. It is a side effect of Tamoxifen I think. With my very short unstyled hair, beard, black tie nail, extra weight, one boob… I am not feeling very glam on holiday 😂 my husband keeps saying that is just one short period in my life and it will pass so I am just trying not to think about it. 

I am thinking of you @maggiemoo  as you get your operation. I hope it all goes well and your recovery is quick.

Lots of love. X

[ML2022]

@NickyC75have you tried scar massage? It really helps flatten and smooth scars faster than they would do it on their own. There's tons of stuff on Youtube about it, or your medical team might teach you how. I did my lumpectomy and port scars basically just rubbing them back and forth along the incision line, not across it, with olive oil (or any massage oil or slippery cream), with good pressure but not painful pressure, several times a day, especially the lumps and wrinkles.

Good luck going back to work in Oct! And I hope you're all having a fantastic vacation together.

[ML2022]

@maggiemoo @NickyC75 @MLT21 @jules_n and all,

LOL, my hair is only a few mm long, too! And it's starting to curl so it sticks up all over. I can see thin patches that I hope will grow in but honestly I was starting to thin already anyway so maybe it won't. Color seems about the same as before, more gray than not, but I'm 65 this week so no surprise there. And yes, the unwanted hair has come back with the wanted! Too bad we don't get to choose which comes back and which doesn't.

Good luck, @maggiemoo with your surgery! Please keep us posted on your results. I also keep imagining I feel suspicious things. My first post-cancer mammo is in October and I know I'll be worried until I get the results back.

We are enjoying a light rain, the first after a long hot summer. Ease, comfort, and best wishes to all of you.

[maggiemoo]

Hi all

Enjoy your holiday @NickyC75  you deserve it

I am booked in on Tuesday for my op.🤞 it will not be cancelled again.  I am a little nervous and not looking forward to that period of waiting for results,  I also keep imagining I can feel someting and then it's gone.   My hair is coming back I have almost 2 mm now 🤣😂, eye brows growing too and looking very unruly now, unfortunately getting unwanted facial hair too

The sun us shining here hope it us with you too, enjoy your Sunday x

[NickyC75]

Hello All,

It is lovely to catch up with how everyone is doing.  @ML2022 and @MLT21 , it sounds as if you are getting stronger every day. @maggiemoo  Fingers crossed your surgery will be rearranged quickly and that is another major hurdle completed. 

@ML2022  My hair is definitely too short for my liking. I bought a good real hair wig and I have only worn it about 5 times. It was just too hot over the summer. I do hate my hair this short but I know it will grow and it is a small sacrifice to make.I did put a semi permanent dye on it as it came back with lots of grey. I have about 2 inches already. 

I had the meeting with the oncologist about the seroma (my scar from my mastectomy looks lumpy and awful, especially when I see how neat they can be). He said the seroma was only small and not worth draining. He called it a ‘dog’s ear’ - which is really attractive! The only other option would be further surgery, which I don’t want. Keeping it there will give me more skin in case I decide to have a reconstruction in the future. 

I did not realise how upsetting it would be going back to the breast clinic and waiting in ‘Waiting Room 2’. I surprised myself as I cried the whole way there. The tears were just flowing from my eyes, without me crying, if that makes sense. I was so nervous they might find something else. The surgeon was lovely and gave both sides a thorough examination, which put my mind at rest, especially as I had swollen lymph nodes under my arm whilst I was in Ireland and thought it was back! 

We are now on a family holiday between Herceptin injections. It has felt nice to fly away from everything and it made me realise how isolated I have been since my diagnosis (with not being at work and basically isolating through chemo). I took my son out of school and we have taken him to an elephant sanctuary and beach holiday in Thailand (I cleared it with the oncologist first). After the rubbish year we have had we just wanted to do something memorable and life affirming. The insurance was not too bad considering. 

My energy levels seem to be improving and I will look to start a phased return to work in October.  I am not sure if it is Herceptin or Tamoxifen but I have put on a lot of weight. I have upped my exercise but nothing seems to be shifting. Before the holiday I was doing Pilates 5 times a week and playing tennis 3 times. Thinking I will have to start jogging too.

I am looking forward to the Breast Cancer Now Moving Forward course, where hopefully I will meet lots of other ladies who understand and I can get some good advice.

Take care everyone. It would be lovely to keep in touch. Xxx 

[ML2022]

Hi @maggiemoo, I just wanted to reply and say how glad I am that the chemo drugs are clearing out and you're beginning to feel better. I really hope you get your lymph node surgery soon. It'll be a relief to get that over and done with. Seems like so much of cancer treatment is waiting and that's really hard to do.

I'm feeling physically almost normal now so happy to report that there's light at the end of the tunnel! Hair's still too short for my taste but at least I know it's back. I'm learning to manage the anxiety over future cancers, but that will take more time for sure.

Best wishes to all of you!

[maggiemoo]

Morning all 

Glad to hear you are all moving on, I am 6 weeks past chemo but still have not had lymph nodes out operation cancelled a second time this time because surgeon is I'll, my own us on holiday 

I seem to be negative at the moment, only to be expected I suppose until I know the nodes are ok 

I feel much better in myself though now the chemicals are clearing away 

Keep well everyone x

[ML2022]

Thanks, @MLT21, I called my oncologist's office and they will get back to me. Good luck with the new drug! I'm not taking it but my cancer wasn't metastasized, at least not that could be detected. I've just started on anastrozole and so far, no problems with it. And congratulations on the port removal! I was so happy to get mine out. I was also sore when they first removed it. It's been 2 months now and it still itches underneath where the port box was, and the scar took some time to heal because not all the stitches dissolved like they were supposed to. Still, small potatoes! We can take this!

[MLT21]

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. 💪🏻🫂

[ML2022]

@NickyC75that's so annoying that they left you out of the staff handbook! And rude, besides! I hope they straightened that out.

I have a question about chemo brain, wondering if anyone has experienced what I'm experiencing. I'm almost 4 months post-chemo and I've noticed MORE trouble, not less, with two specific things. One is driving. I can drive on the open road just fine, but in town with lots of things going on I'm finding it hard to see all the parts of a complex picture, like if there are pedestrians crossing at a 4-way stop and multiple cars waiting their turn to go, or at a construction site with flaggers, and judging the changing distance between me and another car if everyone is slowing down quickly. I haven't had any close calls, but I have to focus really hard in those situations. And the other thing is dyslexia/getting things backwards. I don't normally have dyslexia, but I get numbers and letters backwards now, and especially my clothes when I'm getting dressed, even when I think I've looked carefully at them before putting them on. Strange! Anyone else having these kinds of things? I didn't think to mention it to my oncologist when I had my follow up last week, and I wish I had.

[NickyC75]

Well done @ML2022  I am really happy that you are at this milestone. Hopefully you are getting stronger each day. I know what you mean about looking back. I keep stopping and saying, ‘I can’t believe that all happened’; chemo also seems to have happened ages ago too. 

As for anxiety, I feel the same and am worried I will miss the signs if it does come back. I do this my counselling is helping. I think about it every song me day, even if it is just fleetingly. This last week I have felt more positive and have kept busy. Upping my exercise is definitely helping my mental health. I am playing tennis at least twice a week and have started doing beginners Pilates five times a week (I am just doing a class on YouTube with a girl called Nicole). I am looking forward to the Moving on Course at the end of Sept.

I think the thought of returning to work is difficult. Normally I am preparing to go back in Sept but am hoping to start a phased return in October. I am a bit upset as the staff handbook for the year is out and I have been deleted, despite me being a Head of Dept and Assistant Head! I am sure it is an oversight but it has really upset me.  I am going to bring it up with HR at my next meeting.

@ML2022 it has been a rough ride, to say the least. It is still frustrating that everyone thinks it is over and it is just time to move on, but I know it is because that they have never experienced it. 

Take care and keep holding yourself gently. Xxx

[maggiemoo]

@ML2022 

So happy for you to get through the treatment onwards and upwards now   interesting about lavender I wonder if there is a list somewhere of other things that have oestrogen effects 

Still waiting for a new date for my OP, the antibiotics seem to be working now and cough is getting better, thankfully I did not pick covid up on top

Have a good weekend all x

[ML2022]

Hello all,

I had my 3-month follow up after chemo yesterday-- 3 months! It feels like longer, honestly. Looking back on chemo, that time seems pretty foggy in my memory. It was a good check-up, blood tests were decent, radiated breast is not quite right but it's so much better than it was even a week ago, I could live with this even if it stayed the way it is now. I'll start on my hormone blocker this week. She was very helpful when I talked to her about my anxiety for more cancers in the future and said she'd send me links for resources for living with cancer. I will probably sign up for a support group, too. She told me that I shouldn't use lavender too much because lavender is an estrogen-imitator. I was surprised to hear it. I've been using it every day in my skin cream but I guess I'll have to switch. Have any of you heard that? Also, she wants me to work up to at least 30 minutes of exercise 5 times a week. I'm definitely not doing that now but I'm going to aim for it over the next few months. She said it doesn't have to be full-blown workouts at the gym; walking and stretching and yoga are fine, although she did suggest I wear light wrist or ankle weights on my walks, it's good for the bones. (I think holding on to the dog's leash might count! She pulls really hard.)

What a rough ride this year has been! It hasn't really sunk in that I made it through the active treatment. I hope my life gets smoother and more ordinary from here on out.

[NickyC75]

I am sorry it is delayed @maggiemoo . Fingers crossed you do not have Covid. You never know, they might have a cancellation. I will bet you just want it over and done with.

I am sending all of the gang my best wishes and love. Xxx 

[ML2022]

Oh, that's too bad, @maggiemoo, I'm sorry to hear that! It's so frustrating when treatment gets delayed. I hope you get over the virus infection quickly and that you don't get covid. I'll be thinking of you! Keep us posted, we all care.

[maggiemoo]

Hi @ML2022 @unfortunately it has been cancelled as I picked up a virus which gave me a sore throat and cough(not Covid) my surgeon is now going on holiday for three weeks I am on antibiotics .also was in the same room on Friday with someone who had Covid there were 5 of us and another had proved positive since just hoping I don’t pick it up on top of what I have. As a rule I am hardly ever ill  but I guess my immunity is still low.  They are trying to fit me in to another surgeons list but think realistically I will have to wait 

best wishes everyone x

[ML2022]

@maggiemooI hope your lymph node surgery went well today! Another waiting game for sure while they get results. Thinking positive thoughts for you.

I got my comfort cup in the mail and wore it today. It's a big help but it really needs a liner, otherwise you've got silicone directly against your skin and it doesn't breathe, and that's not good right now. So I'll have to cut out something from an old T shirt or flannel sheet or something else soft that I don't need anymore. My breast is healing really well now just as the doctor said it would. It doesn't hurt very much anymore and most of the dead skin is gone now, and most of the cracking is healed over. I should have ordered it ahead of time because now I don't need it so much, but I didn't know about it and I didn't think I'd have so much trouble.

Better times ahead! Peace and healing to us all.

[jules_n]

Hi @maggiemoo , I was feeling exactly like you at 3 weeks post chemo, wondering if I would ever enjoy food or cooking again! And needing to sleep every afternoon. Just the same as @ML2022 , I suddenly felt much better at the 6 to 7 week point. It was fantastic when the brain fog, lethargy and nausea finally cleared. 

You’ve got more surgery to face now, I really hope that everything goes well and it will be a relief to get rid of those pesky lymph nodes. As you progress post op, I think you’ll notice that the chemo problems are all improving too. Sending very best wishes XX

[ML2022]

@maggiemooI'm sorry you're still feeling such strong after-effects from chemo. It does get better! Another few weeks and you should see a big difference. I think I really felt the shift at 7 weeks, which goes by faster than it sounds like it will. It's too bad that your travel is so long, also @jules_n. I'm lucky because they opened a new cancer center this year less than an hour from where I live. Otherwise it would have been a long trip each way, every time.

Here's a new tip for radiation that my doctor gave me yesterday - he said to bathe my breast with a solution of half hydrogen peroxide and half water, twice a day, and let it air dry. It has helped a lot just since yesterday. He also said that I'm at the peak of post-radiation effects (at 11 days) so I should see a lot of improvement by next Monday. I can get through that!

And please don't worry, if you're listening to me and thinking radiation will be awful. It really isn't awful; we've all been through much worse with chemo. Sometimes I'm so tired of managing all the time. And tired of seeing these physical changes that don't look so good. I know you know what I mean. This is just one more thing, that's all. My breast will heal. My hair is coming back. Everything will be okay.