thats a question that would take us back to times we wold prefer to forget. I suggest you look for a more recent thread where I’m sure you’ll find helpful responses.
I’m just having my second ‘medication holiday’. I started off on anastrozole which had me on the loo with diarrhoea 12 times a day. I’ve just been allowed to stop exemestane for some of the same reasons you were on tamoxifen as I almost felt as bad as when on chemo. I’m going to start letrozole in 4 weeks. It depends whether you were pre-menopause before the op which drugs are available to you, but I’d ask to see the oncologist to work out whether you can change drug, given that the advice now seems to be that you tcan me them for 10 years
Hope this helps and you feel better soon
so it's been a while and I hope alls going well for you all . Just wanting to know ladies , I'm now on tamoxifen and wondering if like me a sudden weight gain has accrued . I'm so down my back aches , my bones ache and I'm a stone overweight . Trying to be careful what I eat , walking is limited because my bones hurt .
any suggestions 💕💕💕
Yes the F word is still on my tongue!!!!
I have done a full week back teaching and I have never felt so tired. I look across the yard and dread having to walk all that way. I had to sleep in the car outside my house for an hour after school one day.
I hardly moved all this weekend and now on Sunday evening I am feeling a good bit better. However any physical exertion drains me.
As you all seem to be feeling the fatigue side effects I am a bit heartened by this. I keep saying that it will get easier as the next few weeks go on.
I always feel the worst one week after Herceptin.....sore hands and feet and itchy.
Maybe this is common I don't know?
Interesting Blueash that your medical team say that some don't finish the 18 treatments. I had actually thought of asking if I could stop. I have done 14. I would love to know if there are any disadvantages of stopping early.
I have to keep saying to myself that I am over the worst. I am sooo happy that my mortgage is paid off. I do of course have the odd wave of incredible self pity when I am in a group of teachers who are full of energy and look great. As none of them know why I was off they never even ask me how I am.
The hair now looks like a mixture of Prince Harry and Lisa Simpson! Sticks out straight and will not lie down. Im still wearing the wig in public and omg I am going to age 10 years when I take it off.
Yes Alex like you the hair is very patchy and I will have to stick the wig till Xmas so the change wont be a huge shock.
People had told me it would be a tough year but it is well over a year now and I am not over it by any means. Aw ladies we have to keep on going forwards. Dont look back cos its not where we are going.
Be good to yourselves! I love hearing how you are getting through this.
I have been discharged by the surgeon. I went back to see her on Thursday following the seroma draining. She had been away then I was so that's why it took a couple of weeks. I have to see the herceptin woman next week - no idea why but I will let you know. The nurses say she wants me to take part in a survey because I have managed all 18 and some people don't.
Then on the 28th I have to see the oncologist and be officially discharged from active treatment.
I'm on zoledronic acid injections 6 monthly for 3 years and exemestane (hormone treatment) for 5 years. I too get suddenly wobbly and out of all energy but it's hard to predict how much I can do before I get overwhelmed.
I have a very sore arm which I'm waiting for an ultrasound on as there appears to be a lump near my wrist, and lots of aches in my legs. Still having problems with my toe nail regrowth and getting ingrowing and very painful nails.
Work are being very good. My brain seems to get full more quickly.
My hair is pretty good now which is great as it's the one thing that really upset me about treatment. I've had a couple of haircuts to make it look like it's got some kind of style. The hairdresser suggested 'Nioxin' shampoo. You can also get conditioner and foam. I got on Amazon. I've got the curls I always wanted and it's getting to be as thick as it was before but it does still feel like baby hair. It's one inch long rather than 18 but everyone says it suits me better.
Are there any plans to meet up as was suggested earlier in our treatment?
I still struggle with fatigue and I was wondering what you put it down to? Are you on hormone therapy? Or is it after effects of all the treatment? I feel I should be coping better with it and others do too!
Congratulations to Blueash!!
What a long long journey you have been on and now you are at the end of it and about to start the next journey on the rest of your life - poison free!!!
Hello to the rest of you as well...
How are you all getting on and are you having any after effects of it all???
Im back to teaching and cant believe how completely drained I am and the kids arent all back yet. I have never felt fatigue like it...my legs are wobbly and I have no strength. I am trying to pretend that Im ok but it is hard. I have a very supportive principal and have been told if I am too tired to say and they will let me go home.
I still have diarrhoea in the morning and a bit of numbness in hands and feet. Anyone else?
My appetite is poor.
I still wear the wig...my hair is 2 inches long but very fine....
.hubby says I look like Sid Vicious!!!
I plan to wear it for another couple of months...my own hair will never look this good anyway.
No-one has noticed it is a wig....
Today I had a breakthrough ..... I went to Tesco in gym gear and felt really great for the first time.
I have lost so much weight that I felt slim and attractive for the first time.......BUT some creepy man kept staring at me. I was buying gin (to make sloe gin) and I heard this creepy voice saying 'where's the party at?)....Yuk but at least I felt like a female again for a while! I told the young lad on the till and we had a good laugh!!!
Enjoy every day from now on ladies!!!!
Well done Blueash at getting to the end of your treatment!!!! It's been a long and arduous journey, but like you say, you now know what's 'drivel.' I rang the bell at the end of radiotherapy and hugged by one of the reception staff 😀. Onwards and upwards as they say. xxxx
Just had my last Herceptin. In our unit there is a bell which you ring when you have finished treatment - I rang it and everyone staff and patients clapped and cheered! It was very emotional, I have been going there every 3 weeks for over a year and have got to know the staff really well. Some have had a babies, some have seen their kids start school and I have been on a part of their journey with them and they have been a huge part of my journey through this BUT I AM GLAD TO SEE THE BACK OF THAT PLACE.
I hope it was just a horrid episode and that life will be - well not quite the same because breast cancer has made me reevaluate what is important and what is really just drivel. Thanks to all of you for helping me through it all.
Aine and - well anyone really, have a look at "toppers" for your hair. As you know I used a cold cap and kept loads of hair so never needed a wig. BUT I am totally in love with toppers - they are wide extensions that you clip in. I only wear one if I am going anywhere but I don't go to work so I might if I did.
I like that one - take no notice of that model she has long hair and is wearing it for a boost. That one is layered and about 8 inches long but they come shorter and longer.
if they are for medical hair loss you don't pay VAT. You have to fill in a form and if you are teeling fibs the tax people chase you not the shop!!
Well I had the seroma drained - 30 ml of deep red liquid came out. They used a syringe and it did not hurt at all because they numbed it. It was just like having a biopsy. Only this time I was not worried about what it might be. It will not be sent to the lab because too soon for any nasties to be in there after chemo and radiotherapy. I have to go back and see the surgeon in a couple of weeks but they think I will be discharged.
Hello Aine & Hazel,
Good luck with the return to work Aine and I cannot believe that asked me to be a community champion!! I have pushed the cold cap lots of times but I was just lucky with it I think. I wear something called a topper if I am going anywhere nice. Just indoors and shopping I don't bother but I went to a wedding recently and if I go to a restaurant I wear it. A sort of wide extension that you clip in and it adds a bit of volume.
I have my final Herceptin on 30th August. Never had a problem with the injections other than that sometimes I get a bruise if they nick a blood vessel is all. One time we had an agency nurse and she gave it to me towards the back of the thigh and high up. Mostly I have had it on the top/front about half way up - when I mentioned it she said it all depends on how you were trained but they have to avoid bone so nowhere near your knee cap.
I do value the friendships we have all made so thanks girls for helping me through it all I will let you know how I get on tomorrow xxx
Well hello to everyone!!!!!
It is really great to hear you all posting this week....good luck Blueash on Friday!
And Haz and Vintage I hope you get some resolution to your swollen joints and feet soon that must be really uncomfortable especially in the summer weather....
Blueash you are now a Community Champion that is just fantastic. You always have such great clear advice...I have appreciated it on many occasions.
I got my nipple tattoo 2 weeks ago. No problem with it and although it was a bit tender for a week it seems ok now. Im getting a 6 weeks top up and again after a year. It looks so much better now - like a proper boob!! I know some people say that the hospital ones fade but I will wait and see how it goes.
I have Herceptin 13 of 18 this week.
Some have been sore and I have been limping badly for a couple of days. The last one they moved the site to further back in my leg and that definitely helped.
I have diarrhoea every morning and then ok for the rest of the day. Anyone else?
I still have episodes of fatigue ... I return to teaching in 2 weeks and am being told by everyone to 'pace' myself.....Im worried but I have to go back and I hope I will cope. Are you all back at work?
Yes we have made it through the past year and should be very proud of ourselves.
We have had to go through hell that no-one can understand as most of it isn't obvious to the rest of the world!
Im still wearing my wig....cant bring myself to ditch it yet as my hair is so thin. I intend to wear it till Halloween and hope it will be ok by then....that is the hardest part for me...I hate people telling my how well my hair looks.....my own will never look that good!
Look after yourselves and be good to yourselves!!!
Aine Big Hugs
Good evening Ladies.
Blueash, sorry to hear that you have a seroma. I hope everything goes well for you on Friday and that you recover quickly.
Vintage, I'm also having problems with fluid retention, particularly in my feet. I've been plagued by numerous ingrowing toenails on my big toe in both feet which have required antibiotics each time. They are now talking about the possibility of removing the nails I invested a lot of time, money and effort to avoid losing my nails during chemo but I can't keep taking antibiotics all the time. One of my local cancer charities has a podiatrist who provides treatment for people who have had chemo as it often affects the nails. She said that it's more a case of the skin growing into the nail rather than the other way around. I'm not surprised as my big toes are huge and fat!! Really they're enormous, I've had to buy some wide fitting shoes. I really hope the fluid retention disappears once I've finished my herceptin. I've found that the fatigue and joint pain have improved, I'm still getting my herceptin by infusion, number 17 on Friday. I have joined a gentle exercise circuit based class run by macmillan and nhs in my area and also joined a gentle walking group at my local Maggies but my feet have prevented me from going to either of them for the last 2 months.
Nice to hear from you all.
I am still taking the Claritin and don't seem to suffer much in the way of aches and pains BUT I also take a high grade fish oil because it is supposed to be good for inflammation. It is this one:
Before I took it I was a bit stiff but that might have been the chemo.
I've had a seroma drained too. The one In my tummy was infected so I went to surgery for that but the one in the breast was pretty much done on the ward and was much less painful afterwards. It didn't really hurt being done either.
good luck 🙂
Last week I went back to see the surgeon and I have a seroma/hematoma that needs to be drained! I said I did not want to be pulled about but she said it will not go by itself because it would have done by now. So this Friday I am getting an ultrasound on it and then it will be drained/lanced.
Apart from that I am feeling great - just one more Herceptin to go and then I am finished active treatment. I still have about 10 pounds which I would like to see go but they say it is the Herceptin making me hold on to water.
I had my mammogram yesterday! I have to go back and see the surgeon next month and I canot believe that it has been a whole year since my diagnoses, surgery, chemo, rads and Herceptin (still got 4 of those to go).
Thanks so much for keeping me sane on the awful journey - I don't know how I would have coped without this thread and our sharing.
I would like to say that we will all keep in touch and perhaps we will but I suspect that some of us will be glad to see the back of all of this and not want reminding. I get an email whenever someone posts so if the thread does stay alive at least I will know and I will return if anyone does post. I wish us all well for the future xxx
I've finished my treatment apart from hormone therapy and zoledronate injections. I've changed tablet from anastrozole as it was making my diarrhoea with my Crohns really bad. I start the new tablet next week. Here's hoping. The injections just make me feel like I have the flu for two days but the oncologist suggested taking a full dose of paracetamol the day before, day of and day after injection so I'll try that. Oh and I've nearly finished the clexane injections for my blood clot. The oncologist said to take aspirin afterwards.
I've given up the brass band for now it's too much like hard work now I'm back at work full time. I have started Pilates. I've found a beginners class especially for people who've had breast surgery and it's the calmest hour of the week. I'm walking the new dog more as well and keep finding new places to take her that are pretty and I enjoy going to. It's great having summer and people's able to walk in the woods. I've also joined a local walking group.
i did indeed go on my holibobs , absolutely amazing , returned yesterday to resume radiopherphy Monday . It will be last week so il be ringing that bell when I leave . Little concerned as every ache and pain I get now I think what if. I've had back pain now on and of for three weeks , back feels sore .mentioned it to consultant he just said nothing to worry about as I'd had scans . But is it normal to have this acheyness . Have I pulled a muscle , everything just flys through my head . I'm having a bone X-ray Tuesday but he's tells me that's to check my bones as I'm on the tablet now . Not tamoxifen but the other one .
its been a long year and my hairs growing back curly and very dark , living life to the max and 😊Xx💕
This video explains it really well but I did not get the monitor and see my breath in the box as shown here.
I just had a verbal coaching session but it was very easy once they explain it.
Was it your left side? Mine was in the left and you have to but able to move your heart out of the way by holding your breath for up to 20 seconds details here:
Once you get the hang of it it is easy but just practice a bit before if this is what you will be having. With me they used to say
"breath in....breath out"
"breath in ...breath out"
"breath in and hold ...............................breath out"
If you can't hold your breath they have to make you a shield so that must be why they are so fussy at the planning stage.
The machine moves around you and you get blasted from about 5 different directions but you don't feel a thing.
What a rotten thing to have happen. I had something similar in that I had to be reassessed from my original planning session and I too had boosts. Of course I was not going anywhere so there was no time pressure.
In my case I had the planning about two weeks before I started the rads - just to recap they stopped my chemo after 4 instead of the planned 6 because my blood counts went too low. So he prescribed the rads to start on a given day about a month later and I had a phone call to attend the planning session. When I turned up for the first session of rads they put me back on the planning CT bed and re planned me. I was able to carry on and have the rads that day because it was the boost area they wanted to re-do. Apparently the surgeon leaves a marker behind in the tumour bed (I just had a lump removed) in case they ever want to see where it was for any reason.
I don't know if I had boosts because my chemo was cut short or if I was always going to get them. I had 15 of the ordinary and 8 boosts.
I used a cream called Biafine:
and had no burning or redness at all. I used to take it with me and put it on as soon as I came away from the machine as i was in the changing room, again about 4 pm and once more before bed. I had all my sessions at around 9 am and you must not apply anything for 4 hours before the rads.
Make sure you put the cream under your arm as well as up to your collar bone and well down on your chest. I did not put it under my arm because I did not know that the beam went there and it was the only spot that did break down and split but a couple of days of applying the cream made it ok. It is a bit like peeling when you have been in the sun too long xxx
I found this in case anyone needs the info it is a video showing how stick on nipples work:
Well that is a big disappointment for you Blueash.
I am very interested in this because I intend to get a nipple tattoo when I eventually get my review appt with my extremely slow med team - waiting since Feb for an appt.
Please let me know how your silicone one suits you as I have to be armed with information when I do get my appt.
I am hoping for a wee op to even up the implant side with my remaining sagging boob!
Did you have this - I cant remember.
Anyone else got a similar story or any info that would help me please?
Be good to yourselves
Well girls my nipple tattoo is no more! It has faded to the extent that it is no longer visible and the nuse said not to bother with the top up. I went along so she could advise me and photograph it for their records but she thinks it could be the chemo or the rads and says to try again in about a year. SO I am having a fitting next week for a silicone nipple which is glued on and stays in place for ages. You get a ready made one at first to see how you get on with it and if you like it they make a mould from your other nipple and colour it to an exact match.
Hello Benno, just saw your post. The answer is yes, it is normal to have fluid under the armpit after surgery, and it should go away on its own. You just need to give it a bit more time.
I had surgery after chemotherapy (19 January) but only had 4 nodes removed, so no drain. Fluid started building up about a week after surgery, and it was so swollen that the dressings kept coming off. When I saw the surgeon a fortnight later, he confirmed the wound had healed, there was no infection and I could leave the dressing off.
The swelling was uncomfortable though, so the nurse drained it for me. She warned me it would probably come back, but that it should go down on its own eventually. I was advised to stop doing the 'advanced' exercises and just do the 'basic' ones until it had gone down. The fluid did come back a couple of days after it was drained, but not as bad as before. It did go down on its own although it took a while. It took just over a week to go down enough to be able to start doing the full set of exercises again, and about three more weeks to go completely.
I have also had swelling under the armpit from internal scar tissue, which still hasn't completely gone. You can tell the difference because this is firmer than the fluid. If the swelling persists it could delay radiotherapy, because you need to get back full movement in the shoulder joint and arm to hold the position on the radiotherapy machine.
My radiotherapy didn't start until 13 March. This may be because I have had to be referred to a different hospital for it, but when I saw the oncologist there before starting, he noted that there was still some swelling, so he may have delayed it to allow it time to go down. He also advised me to do the exercises 4 times a day which I have been doing ever since, and this has certainly helped with the swelling and flexibility of the shoulder and arm.
Hope this helps set your mind at rest.
I had my surgery before my chemo but I have heard that chemo can slow your healing down a bit. I only had one node removed SNB but I do remember them saying that if they found anything in that one node that would take more and if that was the case I would wake up with 2 drains. One for the procedure which would come out the next day before I went home and one for the nodes which would remain for several days and we ( my husband, my sister or my mum) would be shown how to take care of them. I assumed that meant how to empty them. They even went so far as to tell me about getting a shoulder bag for the drain if it had to stay.
As it turned out I only had the one drain which was taken out before I went home.
As for the rads I was written up for those the same day that they stopped my chemo (blood counts too low to continue). It was about 2 weeks later for the planning and 3 weeks after that that I started so about 5 and a half weeks after I was written up. The consultant said to start not before whatever date so I could recover from the chemo and they rang to give me a planning appointment so that i was ready to start the day he said (if there was availability).
Morning ladies ,
Just a little advice I had my surgery lumpectomy and 14 lymth nodes out on the 6th March , stayed overnight out next day with the drain . So three weeks have passed is it normal to still have fluid around the armpit , I've already had it drained once , In fact it was last Friday , by Sunday it had filled again but not as severe as before , I rang the Breast unit and they assure that this is normal and they are reluctant to drain again as it can cause infection .
Does it take a while to settle , if so I'm happy to plod on but if not think il have to go and see the Breast nurse
also waiting to be told when my rads start , said if I've not heard by the fourth week post surgery I have to ring them up , is this normal procedure because my friend thinks it's bad I have to chase them up xxx