Thanks @annemanc i will widen my search for acupuncture as I am woken up from 3/7 times a night. I started taking Letrozole at night as I’d read online it worked for a lot of people but I slowly started taking it earlier and earlier. Now at 4pm still more hot flushes at night than the day. I just want to sleep for a full night with out waking, I’d even take 1 or 2 wakes ups if I can go back to sleep quickly.
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Hi all.
Hope you’re doing well or as well as can be! Just wanted to share that I had my appointment with the spine specialist today and he thinks the pain in my back is from fatty tissue in the vertebrae and not the bone . So good news , but he won’t treat me until after my onco MRI in summer as any treatment might give a false positive on the scan .
Other news , I had a follow up after my radio with a BC nurse a few weeks ago who referred me to the BC clinic as I have a permanent seroma . Saw a BC consultant who has ordered a CT scan and ultrasound of my mastectomy side to check the chest wall. May need an op for a chronic seroma. Also a mammogram and US on my other side as I noticed a skin change near my armpit. She says it’s a precaution as it may be fatty tissue . Fingers crossed she’s right 
. Didn’t expect any of that when they called me in! Good they are being vigilant .
Thinking of you all post chemo @annemanc @naughty_boob @pinklilli3s @plum1 @frazzledmcsazza @Camy_Radika . Hope I’ve not missed anyone , brain fog still a thing!
Big hugs xxx
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That’s fantastic news about your spine @copperycat I’d been wondering how you were getting on. Must be nice to put that worry out of your mind. I’m sorry to hear about the seroma, it’s good you’re being proactive and getting it removed. Hope all is ok with your son too xxxx
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Hi dear, I am so happy you got good news, hopefully any treatment followed will work for you 
.
I am doing well I lost 5 kg with this intermittent fasting and water aerobics, so hopefully will not stop here , I started with 84kg after chemo and now I am going down. I have to be back fit for the time I return to work, on 22 May will be my first day at work. I feel I have to start don’t know if I am ready but need this now.
I have not got appointments for mammography yet I am waiting, nothing else changes, still pain in my bones and joints. But magnesium glycinate helps me with sleeping.
Hopefully you are all going forward with a positive vibe and plenty of happiness and health 
Big hug to all of you 
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It’s good that they are being so vigilant and will be looking into your concerns. This BC thing is not always so straight forward.
Just getting over my 11th Herceptin and have first Zoledronic acid infusion this Friday. Let’s hope it’s straight forward with no side effects.
Sleep is still not so good, have changed Letrozole to take at 4pm but may change to lunch time and see how it goes. Hot flushes are still worse from 7pm to 7am 
Hope everyone is enjoying the sunshine, even though it’s still a bit nippy
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BCN are running a forum users survey, if you have the time hers the link
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Hi Everyone!
(I thought I sent this message but hadn’t!! Happens a lot these days!!)
I got to ring the bell after last RT session:face_holding_back_tears:
I wasn’t expecting it, they surprised me with it. I cried so much!!! Yet immunotherapy treatment ongoing so will ring it again!!
@copperycat so happy for you about your spine results!! This is such good news!
About the bone pain, I worked out it’s the immunotherapy which I’ll have for another 6 months.
Gives joint swelling and muscles weakness. I bought 3 pillows thinking that it was my pillows but no 
, it’s me.lol
Yet I won’t get stopped. Signed up for the exercise clinic and started working out w weights again using the RWL application (all sorts of level and workouts) sore to start with but slowly getting better and today managed a 30 min workout (at my pace) I’ve got immunotherapy today (currently in the chair!!) so I reckon the joint will swell again sadly 
it’s better when the weather is warm.
Post radiotherapy - feeling ok. I have been very tired and fatigued but then gone to bed for 30 min or 1h 
Skin so far held on, I still use the flamigel. Nothing else much to report except that I am flying on Sunday next week for 5 days in Cyprus and hoping I won’t burn.
For sleep and hot flushes, I take sage (menoforce) and ashwanga, if that helps anyone else? Interesting about the acupuncture and the mushroom
Big hugs everyone 
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Congratulations on finishing radiotherapy! I had my planning scan yesterday, so due to start in a couple of weeks I think. Need to start upping the moisturiser and really work on my breath holds. I’m such a procrastinator, cram for the exam the night before type but it won’t work on this occasion!
Did you find a quick nap helps with the fatigue? That’s hopeful. I do like a nap 
I hope you have a wonderful time in Cyprus, I really admire that you’re having these adventures!
Xx
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Hi everyone
Hope you are all enjoying life post chemo.
@pinklilli3s well done finishing radiotherapy and it’s so wonderful that you have a trip planned to Cyprus. I’m still fatigued 3 1/2 months after radiotheraphy finished 
. I’ve had some swelling at the side of my boobs/under armpit, the breast care nurse thinks it’s from the radiotheraphy and will go down in time. I had been referred to the lymphoedema clinic (everyone is in this health board) and she has chased this up to see if they can see me quicker. I’m also waiting on the menopause clinic, I’m drinking sage tea and changed the time I’m taking the Letrozole but no difference yet. Unfortunately the Herceptin (til end of Sept) and Letrozole can cause hot flushes so hard to know which is causing it.
@plum so glad you now have a date for radiotherapy. I found this website helpful for breath hold ( I had to do it for both sides so had to get to grips with it)
https://www.respire.org.uk/
I signed up for the Sleepio app (it’s free for those with cancer) and it didnt recommended having a nap in the day. It also stated that if you wake at night you need to get up after 15 minutes. Some things were helpful but the 15 minutes made me even more awake and I’m not sure it really takes into account medication or illness interfering with sleep rather than insomnia for other reasons.
I had some really great news this week, my genetics results were negative🎉 I was so relieved I cried my eyes out on the phone. I had asked them to call, rather than send a letter for an appointment as I just be worrying. It came in a month early so even better. Have a trip to Northumberland planned in a few weeks so I can go with this weight lifted off my shoulders. I now know that my treatment plan has a finish line now.
Love to you all
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some incredibly good news! that’s awesome. The adjustments for me is real, one day or week am fine and the next one I am not, but at least there are more positive than not. I had immunotherapy Tuesday. Let’s see how my body reacts this time. I started the exercise clinic as well along with RWL (app) fitness programmes and I am already starting to see some positive changes in the last couple of weeks I started.
with regards to menaupose I take a cocktail of vitamins amongst which Menoforce works quite well for me. I went to holland and barrett and asked for advice. All the best with the end of your treatment!
@plum1 i did have naps! not everyday, but definetivly the 2nd and 3rd week I felt more tired. I would just stop, lay on the sofa, put an alarm for 1h or 30 min or just lay there for 20 min, then go out to walk the dogs. Did me the greater good!
This week I feel better, but yet again I just had immunotherapy so let’s revisit this statement in a few days! the warmer helps helps massively.
big hugs to all xxx
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Hi Everyone. Its been quite a while since I last posted. I have been having a hard time (aren’t we all?). I had a lot of issues post chemo with muscle weakness and peripheral neuropathy. My oncologist finally did some tests around four weeks ago. it turns out the problems weren’t anything to do with chemo and I also now have Hyperthyroidism. I have started treatment for that but it is slow progress and I can barely walk or stand at the moment. I am mainly trying not to think about it as it just reduces me to tears. I have been on the meds now for three weeks and feel like there isn’t really much progress. So my life is basically work (I am lucky to be able to work from home), sleep, repeat.
I have started back on herceptin again and had my first infusion for Zoledronic acid infusion. I didn’t know I was having this until I went in for the herceptin. I also thought it was going to be an injection so when I had the cannula fitted I was sent right back to chemo and burst into tears. I ended up back in A&E that night as my temperature shot up and I was vomiting. The herceptin was like a mini-chemo. Upset tummy and massive brain fog for the week and crappy taste again, just all at about 20% of the hideousness of actual chemo. So all in all its been a bit of a sh*t show since I last posted. I am literally clinging on by my fingernails at the moment.
I have my pre-appointment for radiotherapy in a couple of weeks. Things move slow in Kent!! But I am grateful in some ways as I just need something to get better before another thing gets worse.
If i really think hard and make myself focus there are some positives. My hair has slowly been coming back. It seems much thinner than before but as long as I don’t stand under an overhead light it looks okay if a lot greyer than pre-chemo. I found out that docetaxel is more likely to cause permanent hair loss and that it is recommended to cold cap for that drug even if you lose all the hair as it protects the follicles. Hoping posting that will help some future patients. Filing it under things I wish I had known!
It seems from all your posts that it is a very mixed bag of good and bad news. I think everyone is doing amazingly and you all seem very positive despite any of the setbacks you are experiencing.
@daffodil1 - like you I gained weight during chemo. I am sure it will settle over time especially once you become more mobile and active.
@naughty_boob Belated congrats on the negative genetics and I hope you have a fun trip to Northumberland in a few weeks. Look forward to hearing what you got up to.
@plum1 I think you are starting rads soon, so I will be thinking of you when I get mine in the coming weeks. I hope there is good news on the seroma soon.
@pinklilli3s enjoy cyprus and drink a pina colada for me. Best holiday drink ever.
@copperycat - I hope you get some positive news from your scans soon.
@Camy_Radika - good luck for your return to work in a few weeks. I hope it goes well.
@annemanc - Good luck with the rads. It sounds like you will be out the other side soon.
I hope I haven’t forgotten anyone and have got the right messages with the right people. I’ll be blaming post chemo fog if I haven’t. Big love to all of you. XXXX
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Oh @frazzledmcsazza this bc thing is not easy, is it? So sorry to hear how rough you have been feeling but pleased that you have had a diagnosis and treatment in place. I hope with the treatment some of your symptoms will settle soon.
I’m still on Herceptin and yes, you’re right it is like a mini chemo, feeling rough for several days. I had my first Zoledronic acid infusion last week, I was so pleased it wasn’t on either of the two wards I was on for chemotherapy. I went on my own, I felt brave and confident. I’ve found it hard doing things without my husband, he’s like my comfort blanket when out and about in the world. I was shown into the ward and saw beds and normal bedside chairs and then turned the corner and saw a blue chemo chair. On my goodness, did the anxiety kick in. I began to cry and the nurses looked shocked and asked what was wrong. I was shocked, surely I’m wasn’t the first person to have flashbacks from chemo. I will take someone with me next time, al least it’s 6 months away!
Well done for posting the information about the cold cap, luckily I was advised to use it and kept most of my hair. Thinned and lost two small patches above my ears. www.cancerhaircare.co.uk work with www.lookgoodfeelbetter.co.uk on their hair courses. They advise using cold caps if appropriate for your treatment plan and to continue even of you lose some hair as it helps with re growth. I found the charity searching Paxman cold caps, it’s a shame the cancer centre didn’t promote this.
Well done for continuing to work, you’re a superstar.
If you want to ‘talk’, you can click on my name and send a direct message or you can continue to post here.
Thinking of you
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Thank you dear,
I am so sorry you have a bad time, hopefully soon you will feel better 
, I know all we have and had lots of tuff days but look at me know I am 6 months post chemo and 3 post radiotherapy and i can said I feel good, except the joints and bones pain, but I live with, but now when i read yours problems I remember all mine i had.
So what I want to said is will come sunny days for you all and try to remain positive and think not to long till you will be better.
I don’t know yet how I will work, and hopefully I can manage.
Big hug for you all, good luck with radiotherapy I seen some of you will start soon @plum1 , enjoy the holiday for all are going @pinklilli3s @naughty_boob , @daffodil1 @annemanc @copperycat good luck with the scan🍀 @
This Sunday we celebrate the Orthodox Easter 
, I am busy this days.
God bless you all 
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Hello all,
So nice to hear all your news, really sorry some of you are having a hard time. @frazzledmcsazza thyroid issues are v hard, I had an overactive thyroid for years. Anything to do with your metabolism can make you feel rough. I hope the meds kick in for you soon.
I finished my radiotherapy yesterday, so happy! Like @Camy_Radika and @pinklilli3s I’ve upped my exercise and feel good from it. I like that when I get an ache or pain I can blame it on running rather than my treatment. Still waiting to start Abemaciclib so slightly nervous about that.
Xxxxx
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Thank you @naughty_boob, @Camy_Radika and @annemanc for your replies. I really appreciate the message and the support. It has made a big difference to how I am feeling.
I hope everyone enjoyed the bank holiday weekend and hopefully the sun is shining where you are today to help ease back into the work week. At least it is a short one.
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Hi @frazzledmcsazza, sorry you’re now dealing with thyroid nonsense on top of everything else! I was diagnosed with hypo (under active) in summer 2020, I think it was a consequence of chemo. It really played havoc, I’d be fine one minute and then could literally feel energy draining from my body and would have a need to lie on the floor before I fell, even if I was sitting at my desk. Definitely evened out once I was on meds and I’ve been stable for a little while now with no increase in dose so hopefully once you’ve got some meds in your system you’ll start to see the difference 
I start rads on Monday. Got my appts through and luckily they’re all in the afternoon so don’t completely interrupt the day. 15 total, I’m having 3-4 areas zapped. Trying to seriously practice my breath holds but I’m crap at it. Can’t seem to stop the air escaping at some point- I saw someone mention a nose clip which I think I’d find really helpful but I’ve not had the offer!
The seroma has mostly settled but feels a bit more prominent today, can’t tell if it’s paranoia or if I’ve angered it somehow. I’ve also got one in my boob which no one is worried about but I don’t like feeling it when I’m trying to moisturise my scar…
Hope you had a good bank holiday weekend x
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Congratulations on finishing! How are you feeling? Do you have any tips? Did you have to do the breath hold? x
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Thanks! It’s nice to have finished. Everyone has different experiences, but I found radiotherapy easier than chemo. I moisturised each night and did my stretches etc.
It completely depends where you live, but my top tip is that if you’re close to the radiotherapy centre ask for early morning appointments. The sessions overrun as the day progresses, so afternoon ones often mean lots of waiting about while if you’re in at 8 you can be out 10 mins later. I found waiting in a room w very poorly looking people (sometimes on stretchers) one of the hardest things about it as I don’t want to think of myself that way.
I also found it super helpful psychologically to have other stuff planned for later in the day (a swim or a walk w a friend) so that rads was just one thing rather than my entire focus. I didn’t have to hold my breath as I had my right boob zapped
Best of luck xxxx
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The radiotherapy staff will know if air escapes and can ask you to take small breath to top up if you can. If not they stop the therapy and restart when you can hold your breath again.
I found day 3/4 I became very tired and sore (5 days, high dose, both sides) and found it hard to hold my breath. They staff advised to take painkiller for the next treatment.
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Thank you @naughty_boob and @annemanc, sorry for my slow reply. Currently on my way in- have felt a bit wobbly this morning but I’ve been hit with the after effects of my Kadcyla the last 24 hours- absolutely drained and a 3-hour nosebleed this morning which got tedious quite quickly. If I have another one that doesn’t stop I’m to take myself to A&E. So that’s made me feel a bit queasy and now a stuffy nose- although I suppose that will help with the breath hold!
XX
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