@plum glad to hear you are home and recovering. I did not have full node clearance but did have some nodes near my armpit cleared. I am five weeks into recovery and still have sore arm and sore armpit area. So you are not alone and I think you have had more done than me. I think it will just take quite a while to recover. Just to add although my arm is sore it is on and off and quite low level so it is easy to ignore most of the time now. I hope you will feel the same in a few weeks.
I have had a break in Phesgo between Chemo and now. So if I manage the next 12 cycles I think that will also take me into 2025. A bit sad about that too. @plum1 weāll be in it together.
I have some weird post-chemo side effects. My legs and hips are sore all the time. I have been trying to do around 6000 steps a day as keep being told exercise is good for reducing reoccurrence risk. It is a struggle. As is getting out of chair and off the sofa. I am finding it mentally harder than chemo. At least with the immediate chemo side-effects I could see them ending each cycle. I have no idea how long I will need to put up with this pain and neither do any of the professionals I speak to. My hair is coming back but it is quite sparse. Am feeling quite low this week and have been in tears quite a lot. Hoping this is a mental and physical blip and I will feel better soon. At least I can drown my sorrows in chocolate come Sunday!
I hope the radio silence from everyone means you are all out enjoying the weekend. I will try and up my game tomorrow and do my gratitudes and find some positivity from somewhere.
Sorry @plum1 i never replied to your earlier message about auxiliary lymph node clearance. If Iām honest I hesitated as I was finding the recovery tough and didnāt want to bum you out with my negative experience! After the first week (where it was numb) my arm ached all the time from nerve damage and I got horrid cording right down to my wrist. Butā¦ over the last week itās got tonnes better! 8 weeks seemed to be the turning point for me. I didnāt have any chest pain though. Would massively encourage you not to overdo it at the start, after I rested my arm lots it improved.
Sorry to hear about your ongoing treatment, and yours too @frazzledmcsazza itās so tough. I felt so similar @frazzledmcsazza and was struggling to get out of chairs etc. Over the last few weeks Iāve upped my exercise (doing gentle weights w a personal trainer and the couch to 5k running programme). Itās really helped me physically but more importantly mentally. After every thing my body has been to it feels nice to treat it to some exercise. Which is weird as I was always the person at school who hated PE!
Sending you all love. Iāve got 19 daily sessions of rads starting in a week, then 2 years of abemaciclib (targeted therapy). Also on tamoxifen now which am finding ok so far. Xxxx
Hi @annemanc and @frazzledmcsazza, thanks for your replies. I guess the big takeaway is I need to be patient- definitely not one of my virtues, but if I have a two-month mindset rather than two-weeks, maybe Iāll be less impatient and feel like everything is on track as it should be! I popped out to run a couple of errands yesterday at a retail park nearby and felt wiped out after about an hour, so today is going to be mostly reading on the sofa.
@frazzledmcsazza Iām sorry youāre suffering with your hips and legs, do you get any relief with heat pads or muscle rub? I wonder if a gentle swim (or float!) would give you some relief? Re: the hair regrowth, Iāve been taking biotin gummies and itās probably a placebo but my hair has filled back in quite quickly- scalp massage is also meant to help generate growth.
@annemanc Iāve never been a gym bunny but Iām finding that Iām also desperate to get to the point when I can restart c25k and also thinking about a personal trainer for a few weeks once Iām ready for it. I read that being a healthier BMI helps reduce risk of lymphodema so thatās another motivationā¦ the presence of a numb bingo wing is also quite annoying
The good news is my bonkers surgeon rang me last night to say all the nodes he took this second time were clear so I had half a glass of pink Prosecco last night! I think mum thought I didnāt react enough to the news- yes, itās good, and reassuring, but thereās still plenty of stuff to get through- especially since goalposts keep being adjustedā¦
@plum congratulations on the good news. I know what you mean about everyone thinking we should celebrate more, but as we all know that is tough in the midst of the side effects and future treatments. I know what you mean about being patient. I think it is just hard when you donāt know how long you need to be patient for!
Thank you for you words of encouragement too. I will have a look at things that might ease the pain. I cracked last night and had some paracetamol which helped.
Thank you also @annemanc for your reply. I am hesitating to post sometimes too as I donāt want others to feel like it stays hard but maybe that is the reality of it all and I feel better for having shared that I am finding it hard and knowing that others also have or are feeling the same. I am going to get my big girl pants on today and look for the good things and try to do something fun to take my mind of it all. I will keep up the exercise and hope that I will turn a corner soon.
And also the sun is shining today which is so good to see.
There are lots of messages to read through here and I still have post-chemo brain fog so apologies for not replying to everyone individually.
Plum1 thatās truly brilliant news, half a glass of prosecco sounds wonderful.
Frazzled, sorry to hear youāre struggling post-chemo with various symptoms, I empathise. My oncologist said it takes at least 6 months to get back to anywhere vaguely near normal energy levels after chemo and radiotherapy, and said a year is more realistic. Iām now over 2 months on from chemo and just over a month after end of 3 weeks radiotherapy and I feel just like you. Fatigue levels probably worse than during most of chemo itself, the same for achy joints and bones. Even my ankles and feet feel stiff in the mornings. I cannot get off the floor without holding onto something. I wonder whether the steroids helped disguise aches and pains. Hair is coming back slowly, I showed it to some friends yesterday who were really kind.
Iāve just been out in the sunshine pegging out washing, lovely but tiring!
How is everyoneās weight? Iām about 5 kilos heavier than prior to all of this. But I need chocolate daily!!!
@plum1 glad your surgery went well and nodes ok. Sorry to hear you are struggling with recovery, just be kind to yourself. Your body has put up with a lot with chemo and surgeries. I can understand itās so frustrating that your treatment plan has changed and will last longer than originally planned but the team would have weighed everything up and you will be offered the best for your situation. I donāt get other peopleās attitude that we need to celebrate the little things, sometimes with this cancer stuff itās hard to think this way. Most people think that because chemotherapy has finished I should be back to normal, but Iām still on Herceptin and it knocks me back a few days every 3 weeks. Have appointments for Zoledronic acid (Zometa) for my bones and that apparently gives you flu like symptoms for a week, something else to look forward to
@frazzledmcsazza I can sympathise with the aches and pains, not sure if mine is post chemo/radiotheraphy, Letrozole or menopausal symptoms. I feel so old, having to push myself up out of a chair, they do ease a bit with exercise. I walk daily and have added some small weight/resistance bands but I really have to pace myself. I used to regularly do weights and pump classes, I feel so weak! Iām also very teary. If I talk about my cancer or the future, I just seem to start crying. Iāve had 5 sessions of counselling through work but it wasnāt very helpful. Iām on a waitlist for Penny a Brohn, hopefully soon. Meeting ladies who have also had cancer on a Menopause Well-being day at the Penny Brohn centre a few weeks ago helped me more than anything else. They got me and they got all the feelings and worry because theyāve had their own cancer journey. The physio at the well-being day said to give yourself 8 months after chemo/radiotherapy to feel more ānormalā (probably never be what we once wereš)
@annemanc sorry you have been struggling with your recovery but Iām glad you have now turned the corner and itās getting better. I will be thinking of you with your radiotheraphy starting next week. Targeted treatment is still treatment and many people forgot that, so be kind to yourself.
@daffodil1 you seem to have very similar side effects lingering as me. My weight is about 7kg higher than before all this started. Iām trying to eat more healthy but when you feel sh*t you just want to grab cake or chocolate. We all have to remember that radiotherapy keeps working in our bodies long after the treatment. Iām over 2 months post radio and still have very achy ribs and taking paracetamol. Itās getting a bit better over time.
Iām enjoying this sunny weather today and hoping for more so I can get out in the garden and do all the jobs I didnāt get to do last year. On the 2nd April it will be a year since I found the first tumour, Iām not sure how I am going to deal with it. Iām grateful for all the treatment I have had so far but with the side effects on going and terrible hot flushes and poor sleep, Iām just so tired of it all. Iām trying a new sleep app called Sleepio which is free to anyone with cancer (MacMillan) and Iām now on restrictive sleep, trying to get better sleep in a restricted time. Unfortunately the hot flushes donāt know about the appš
@pinklilli3s How are you doing? Enjoying being back on the horse?
Omg I am getting a lot of joint /bones articulation pain too! I have been very active and out it down to the fact I hadnāt been so active but did think I could be chemo related/immunotherapy related. I will ask when I see them for the next immunotherapy sessionā¦ the worst pain is round shoulders/neck. Going to see oste and trying to do yoga. Realised Iāve lost a LOT of weight and muscle mass. Also looking at changing pillow.
Enjoying the weekend indeed. Riding as much as I can, took customers outā¦
RT scan is Tuesdayā¦break is over. Hope I can avoid this bone pain or skin irritation but that if I do, I can recover quickly.
Please take the paracetamol!!! Itās no sign of weaknessā¦itās help Yiu feel better and so you can sleep. If you can sleep, your body repairs. I still naps and will take them whenever my body asks for them! I will.loe in etc but try to wake up by 9amā¦ @annemanc I am starting RT on 8th April and have 10 sessions. Wishing it goes as smoothly as possible for you
@plum1 currently using neck electric blanket! Helps a lotā¦ Biotin is proven to help. I lost a lot of hair recently post op as my body went on strike, and it needs a tidy as i have hairs in various length booked a haircut, itās more of a hair tidy though ahaha
Congratulations on this fab news of nodes clearance!
@daffodil1 brain fog is real I nearly forgot the name of the horse I rode (not my usual one!) I had to repeat the question and make a very long sentence to allow me time to find the name in my brain
Anyway on the good news front, I donāt have the brca gene! Got the call from the genetician and cried after the call, of relief and joy! @naughty_boob when is your last day at work? Iāve booked a holiday to Cyprus for after RT. I am treating myself to a luxury hotel! Even if I am in pain, I might as well be in pain away in the sun (factor 50 ofc) was told post RT and chemo weāre highly sensitive to sun. Bring on the pima colada!
Hi Everyone
I went to the osteopath today and I had a lot of ribs that were misaligned as well as my pelvis, the osteopath thought that the ribs and neck, were probably linked to the operation, ei, I had been trying not to use my right arm and ākinkedā myself.
I thought I would mention it as this might benefit some of you. I feel tons better after the manipulation, I went home and had a bath and now resting xx
Lovely catching up on all your news. I know its not always good, and sending love to everyone whose not feeling the best, and also to those with some good news , itās always a boost to hear!
Iāve not been around much as Iām having a few issues at home with my adult son whose been having a recurrence of his epilepsy even though he has been seizure free for 4 years. itās a stressful time. Eating my body weight in chocolate ! will indulge for a few days then it will be back to healthy eating.
Also have an appointment with my BC surgeon in a few weeks time to check the seroma I have that is rock hard after radio. And will see a spine specialist in a couple of weeks to check my back.
@pinklilli3s thatās interesting about your pelvis being misaligned. I had one on one pilates sessions after my op and was told the same thing. Unfortunately had to stop going because of issues with my spine - need to sort that out first.
Hello ladies
Hopefully you are keeping well and had a lovely time with your family for Easter , this year orthodox Easter is on May so will take more a few weeks for us. @plum1 I am glad your surgery went well, hopefully you are feeling better. I used loads of pillows under my arm to feel more comfortable, my lymph nodes are removed too, and I did the exercises they recommended me every day 3 times per day, even you feel pain do not give up. I recovered my arm movements in a month but a I continued with arm exercises, I had corded where the lymph nodes were removed but I didnāt give up the exercises.
In time you will be better, and inflammation will not be so painful, but pain you always will feel under arm, but something similar as a muscle fever doable.
My hair start growing is very dark black and grey, as before I had blonde hair. Is very strange now is almost 2 cm growth, I have appointment in a month for hair cut. The hairdresser doesnāt want to bleach my hair, so I donāt know if I will use a dark colour to dye my hair or I will take a risk with a lighter. My oncologist said I can dye the hair, but hair dressers is not happy to do now.
I am with energy levels around 6 on a scale of 1-10, but some of the days I am more active.
I am on Zoladex injection to induce menopause and tamoxifen to block the estrogen, all this causes a bad joints and bones pain, doctor said will always be in pain but tolerable, hot flushes start on chemo so noe them are not to bad, mostly in the evening and night, during the day i am freezing .
I am 4 months after chemo and 2,5 monts after radiotherapy, I can say if the bones pain would not be in place , I think I can said I am recovered and me back but unfortunately will never be the same.
I hope you are doing well and I am here if anyone wants my support @copperycat , @naughty_boob , @annemanc , @daffodil1 , @frazzledmcsazza@pinklilli3s@plum1 , hopefully I mentioned all of you
At the moment I start using for my hair shampoo from MoGoo, as my scalp started be so icy when hair comes out. Hopefully this will work. I used castor oil before, but pharmacist said to use MoGoo, but let me know if you have any recommendations.
I am on my 3th week at the water aerobics class and is suitable me better than gym or pilates, is more mild movements for my bones.
I hope to return at work in May but I will have a chat with my boss to see exactly, as they can wait me to be back to work.
All my best health wishes to all, and big hugs
PS. My son turned 18 years old last week, I feel so oldā:star_struck:
Iām healing, but have got a seroma that Iāve had drained twice and can already feel is back, so thatās annoying. Iām on a 2-week course of antibiotics as there was a little bit of bacteria when they tested it.
Iām still on weeks 1-2 exercises as with the seroma Iām struggling to lift and lower my arm further- the seroma sort of moves and makes the lowering of my arm really horrible, sort of crunchy?! I donāt know how to describe it any other wayā¦
Iāve got my first appt with the radiotherapist tomorrow to talk things through, and a physio appt booked for a couple of weeks so I know Iāll need to have my arm raised for that so hopefully the seroma stops refilling soon!
Otherwise Iām ok, feeling really creaky in my knees and have really achey feet (hand and foot syndrome?), I hobble a lot when Iām first out of bed, it feels like plantar fasciitis. Hopefully it will start to ease soon too, Iām 3 month post-chemo now. Start my Kadcyla next Thurs, so maybe it will end up lingering. Iām sat here freezing under a heated blanket so itās almost reassuring to know that itās also āa thingā. (Why are there so many āthingsā?!)
Hi @Camy_Radika , good to hear your update. Iām in the same position as you hair wise. I have about 1.5 cm. I did the Look Good Feel Better course for hair and they had lots of great tips. I know it fills up quickly, but if you donāt manage to get on it, they have a great website with loads of information. On the course they recommended Faith in Nature shampoo and conditioner with Rosemary. Iāve been using it and my hair feels nice and soft. For scalp care they recommended rosemary oil, diluted ( never neat) in hot water and applied with a soft face cloth to the head. Also Wileda hair tonic.
I also would like to dye my hair as itās salt and pepper gray and I usually have red hair! The LGFB course recommended waiting until 6 months after chemo and having 2.5 cm of hair. Canāt wait
I have an appointment with a consultant at the breast clinic on Monday as I have a Seroma that is rock hard after radio. But I also have found some skin puckering in my other breast near my armpit. Not sure what it is but thought it best to get it checked. Iām hoping itās nothing serious
Hope your son had a lovely birthday! My daughter was 25 last week, how did that happen xx
Started RT and starting to feel achy towards end of week one. I genuinely feel like ive aged by 10 yrs internally, I know I shouldnāt say it because what you think, happens, but I feel my body creaks in all sorts of way it didnāt before!!
Iāve go every 3 weeks of Pembro still till 3rd October and that can also give bone /joint ache.
I am not letting it dampened my spirit though. I have a little Cockapoo boarding at mine and I couldnāt be more thankful as she forces me to walk and go out!
I decided to take part in the dog walking challenge for stand up to cancer. Am not saying it to get any money from you but to say that it was nice to have a goal to look forward to. Having mini goals helps me feel normal.
Ibe also had a mini haircut! Hair is coming back but have lost my eye lashes again and seems to be loosing my eyebrows again too. Amy downen said itās also happening to her so am going w the flow and hoping theyāll come back stronger!
Big hugs to everyone. All the best to all of you still going through treatment
Hi everyone, happy weekend!
I just wanted to share something for those of you with aches and pains - I spoke to my nurse on Thurs about my creaky knees and hand and foot syndrome and she got some Vitamin B6 / Pyridoxine tablets sorted for me. Iāve only taken two so far, Thurs and Fri, but already feeling an improvement, so worth a try if youāre suffering!
Hope you are all doing well. Making progress with my physio, got my elbows on the floor this eve
Sarah x
Thanks I will give it a whirl! I went to see a Chinese acupuncturist on Thurs (as Iād tweaked my back) and he recommended taking a teaspoon of ground Reishi mushrooms each morning, in hot milk or water. Apparently itās good for your liver and is anti inflammatory, so helps with recovery from chemo and rads. Iām halfway through my radiotherapy now and theyāre happy for me to take it, so Iām going to give it a go.
Thanks @plum1 will ask at my next appointment, Iāll try anything. Never sure what is causing my aches, post chemo, radiotherapy, Letrozole or the 3 weekly Herceptin.
@annemanc well done for half way through radiotherapy. Do you get hot flushes? Does the acupuncture help? I read a few people saying it does but itās hard to find a local practitioner.
@pinklilli3s How is your radiotherapy going? I had 5 days but high dose and both boobs and Iām still suffering which very achy ribs and swollen boobs! I was told they would shrink but not me. Glad you are enjoying the dog sitting. Well dons for doing the stand up to cancer dog walking challenge, I walk our dog twice daily is itās so good to get out listen to the birds and experience the unpredictable weather
I am due another haircut post chemotherapy, even though I kept most of my hair with cold capping I still find my scalp is still sensitive. The bald patches are now like a long buzz cut and the hairdresser cuts the hair around longer to hide it. I generally only have a wash and cut and a very light blow dry with hands. I am still shedding and think it could be the Letrozole. My hair appears to have darkened, I was a dark blonde and now itās more brown. Luckily I still only have the odd grey hair, I thought that would increase with chemotherapy.
Thanks @naughty_boob. Iāve found the radiotherapy ok so far physically, been tired but itās more doable than chemo. Nine sessions down, ten to go.
I get hot flushes but theyāre pretty sporadic and thinking about Iāve not had any since my acupuncture on Thurs, exercise seems to keep them at bay too which is a good incentive to keep moving. Iāll be starting zoladex injections soon though (to switch off my ovaries) so am preparing myself for more when that starts.
My acupuncture guy said he does acupuncture specifically for hot flushes, which i reckon Iāll take him up on if they increase. Xxxx
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 Iād 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, Iād even take 1 or 2 wakes ups if I can go back to sleep quickly.
Hope youāre 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 wonāt 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 itās a precaution as it may be fatty tissue . Fingers crossed sheās right . Didnāt expect any of that when they called me in! Good they are being vigilant .
Thatās fantastic news about your spine @copperycat Iād been wondering how you were getting on. Must be nice to put that worry out of your mind. Iām sorry to hear about the seroma, itās good youāre being proactive and getting it removed. Hope all is ok with your son too xxxx
If Iām honest I hesitated as I was finding the recovery tough and didnāt want to bum you out with my negative experience! After the first week (where it was numb) my arm ached all the time from nerve damage and I got horrid cording right down to my wrist. Butā¦ over the last week itās got tonnes better! 8 weeks seemed to be the turning point for me. I didnāt have any chest pain though. Would massively encourage you not to overdo it at the start, after I rested my arm lots it improved.
so I had half a glass of pink Prosecco last night! I think mum thought I didnāt react enough to the news- yes, itās good, and reassuring, but thereās still plenty of stuff to get through- especially since goalposts keep being adjustedā¦
booked a haircut, itās more of a hair tidy though ahaha
I nearly forgot the name of the horse I rode (not my usual one!) I had to repeat the question and make a very long sentence to allow me time to find the name in my brain 
xx
is very dark black and grey, as before I had blonde hair. Is very strange now is almost 2 cm growth, I have appointment in a month for hair cut. The hairdresser doesnāt want to bleach my hair, so I donāt know if I will use a dark colour to dye my hair or I will take a risk with a lighter. My oncologist said I can dye the hair, but hair dressers is not happy to do now.
.
but unfortunately will never be the same.
