This is my first go on a forum so I hope I am doing the right thing?!
Have just finished 5 weeks of radiotherapy - feeling a little tired but have tried to keep walking daily throughout treatment - althought the inclination to walk has disappeared since finishing treatment.
Feel in a bit of a limbo land now as I don’t have another oncology appointment for 6 weeks.
Can anyone tell me what side effects, if any, I am going to get over the next few weeks.
Am also worried as I have been put on Arimidex and been told hat I will have to have intravenous bisphosphonates as the Arimidex is going to thin my bones rapidly. I don’t want to have them. Has anyone else been faced with the same problem? Would love to hear from you as I don’t seem to be able to find any answers anywhere.
Hi i finished my rads inNOV and the stiffening of shoulder,breast and achey stabbing pain within the breast did get worse over the next coupple of months or so before tbey got better so keep doing youre shoulder exercises keep it well mouisturised with aqueous or e45cream and be carefull in the sun when it arrives at least factor50 take care julie
Ps im on tamoxifen so cannot comment re medication but im sure they will keep check with bone scans reegular and make sure you eat plenty calcium and vit d and fish oils to help prevent this
hi, just got appt for rads today and now ive started to read up on rads i realise i have no idea what is going to happen, eg tatoos?? how many?? side affects?? if any ladies could enlighten me i would be gratefull dont see my oncol till nxt wens…thanks
Avril start putting the cream on now so skin is good before you start.when you go for planning they will go through everything but you will have a ct scan and cxr its just like a big polo mint machine you are not enclosed and can see all around this is to get positioning right so they can see postion of vital organs like heart lungs etc aand plan treatment to miss these organs and so not damage them.I had 5 tiny freckle like tatoos 2 on breastbone 1under each arm and 1on breast but hardly noticable and no more uncomfortable than an injection.they do a dummy run of machine without it swithced on and do numerous marking around breast and armpit with indelable coloured inks.The machine rotates round you changing postions a ouple of times but never touches you so we will know what to expect. When you have actual treatment it is over in less than 5mins it takes longer to get you in right postion and when swwithched on it sounds to me like a dying wasp ha ha a quick zap and youure done.Iwas given a modesty top with velcro fasteners to keep for entire treatment and it pulls down just on the side being treated so always felt like my modesty was protected ha ha what was left of it. They also take a photo mug shot to ideentify they have the right patient each time. Make sure you wear old bras or vest top cos they do get covered in ink.THey finally take an acetate tracing of the markings and photograph them too so they can be put back on if they wash off.Dont use any perfume or deoderant or body cream on treated area just aqaueous or e45 cream and you can also use it as a soap too to wash with. Hope it all goes well for you xJulie
thanks Julie dident realise just what is involved…ill keep u posted
Sky,
I am on Arimidex and my lumbar region showed as osteoporotic on the dexa scan, so I was prescribed a weekly bisphosphonate tablet. I took the packet home and after looking at possible side effects on the Internet and the hassle of taking them, I couldn’t make myself even try them. (I can’t eat an orange on an empty stomach without severe pain.)
I told my GP and she suggested that I try strontium ranelate - trade name Protelos. She sent me away and said check it out on the Internet and let me know if you want a prescription.
I searched for side effects on the Internet and thought the aspartmane in it might be a problem as I get very dry if I have artificial sweeteners so I tried Strontium citrate tablets off the Internet first but got slightly dizzy - I think the citrate bit did that as I had the same reacttion to drinks with lemon skin in them.
In the end I got the prescription for Strontium Ranelate. You can’t have calcium supplements or indigestion tablets 2 hours either side of taking the daily / dose.
It is a powder that you mix with water to make a suspension that tastes a bit like sweet ground up chalk. And it does make my mouth very dry but I can live with that.
Hi Avril
Had my 5th session today of 15. I can honestly say I was scared to death when I went in for my first treatment, but so far it isn’t too bad. Bit tired but could be the travelling I am doing (3 hours) for my 10 min treatment. The staff in Exeter where I am going are friendly and really good at explaining everything. Ask lots of questions and as the other ladies have suggested apply the cream ASAP. Good luck with it all, you’ll be fine.
Hi Avril,
i have just finished my 5 weeks of radio therapy and it has gone well.
As juliebtaurus says they line you up on the machine ( I think different health authorities may do it slightly differently.)
Both my arms were put back in stirrups above my head even though i was only having my right breast treated (bit like giving birth upside down!)
They then stick what looks like bits of sellotape with wires in all over you, line up the lasers on the machine and then, as julie says, draw felt pen lines all over you!
You then go backwards into to the scanner, which was the same as she described it for me to monitor where your heart and lungs are so that they can avoid them with the beams as much as possible.
They make the tattoos by pouring a little ink on you and jiggling a needle up and down just under the skin. They are, literally the size of a freckle! I only had 3 - 1 between my breasts and 1 on either side of each breast under the arm but lower down on the body sort of in a straight line if you drew one across your nipples and around the side. Does that make sense? I’m not sure?!
Don’t but any cream as they give you the cream free when you go for your first treatment and some more before you leave after the last one.
When you go you lie in the same position as you did you the setting up. They check the machine and you are all in line correctly and then leave the room while you are ‘zapped’ With me they did this twice each session after changing the position of the machine in between. It literally takes no more than 10mins and if you ars worried about any thing they will answer any questions.
I drove myself each time and now have a sun-tanned boob and one week after it finishing am just beginning to feel a little tired but that is all. Hopefully you will fly through it. It is definitely the easiest part of all the treatment. Good luck. SKY
Hi surfie,
You are very brave - I am more worried about my spine than i have been about the breast cancer.
I called in at our local cancer help centre and she told me that if i didn’t take the bisphophonates that i would have to ‘consider the quality of life that i wanted’ and that ‘osteporosis would kill me too’!
I htink that my oncologist wants me to go on intravenous ones as he said ‘the tablets are a pain in the arse to take’.
A friend of mine has emailed me details of 2 intravenous bisps. called Reclast which you have once every 2 years and Boniva which is an injection every 3 months.
So far I am taking nothing but may ask my onc if i can have the 3 monthly injections as the osteoporosis society emailed me and said that Arimidex causes very rapid bone loss of the spine up to 8% in the 1st year!
I don’t want the 2yr one stuck in my body for that long if there are any serious side effects to come! I am scared!
Just like to say I had my rads last mar/april, 22 sessions.
I found wearing a silk vest/camisole top helped with any “rubbing” when I started to get sore spot.
Also on arimidex, and touch wood, no side effects, well apart from mega hot sweats but during winter, they have been slightly welcome lol. not heard about needing any extra tablets for bones etc, and just have the yearly mammogram, first one was just before xmas, everything was clear.
Hi Tally,
Congratulations having a clear mammogram - it must be quite a relief even though it is only early days.
I get really bad hot flushes with Arimidex too - had just finished 3 yrs of them with the menopause and had only had a couple of months free of them when the BC was diagnosed, so it looks like its another 5 yrs of warmth to come!
Hopefully you won’t need a dexa scan for the arimidex then, but I know that it does result in rapid bone loss so it might be worth enquring with your onc.
Sky
Hi juliebtaurus,
Thanks for the info on possible side effects from the RAD.
I have been doing my breast & arm exercises religiously as i am paranoid about my arm after having both cording (axillary web syndrome ) & lymphodema.
I love gardening and I’m really worried that I am not going to do what I used to be able to.
Thanks for the reminder about the suncream. I do remember being told that now right at the beginning of treatment.
Sky
thanks sky, supose after chemo radiotherapy sounds easy…i hope
I’m sure you’ll be ok. I can remembe being really worried before i started. (and at least it is totally pain-free!
Good luck.
I’ll let you know if i get any side effects now i have finished.
how many weeks are you having?
Sky
hi sky, not sure yet have to see oncol dc nxt wens…at least hospital only 15 min drive takes 30mins to find a car parking space tho…
Hi
I’ve just started my RT (3 weeks) only had 2 sessions so far. I was “planned” on a CT scanner as simulator being replaced.
Both sessions so far went OK, apart from delay. I only work a couple of miles form the hospital & luckily my appts are mostly late afternoon. Also OH has managed to finish work in time to drive me & we then go home from hospital.
Despite the 3 tatoos I have they still write on me, I think to make the tatoos larger so they can see them on screen easier. I generally take about 15 mins for my sessions; need to relax and let them get you in postion. On first session I was too helpful & it took a little longer.
The RT itself only takes a few minutes; in fact at first session they told me they were taking a picture & if they needed to re-do it they would come back in & let me know. They did come back a few minutes later; I asked if they needed another piccy; at which point they told me they had already “zapped” one side. I blinked & missed it. Didn’t feel a thing.
Leaving work at 15.30 today for session 3. I have to say I woke up at 12.50 this morning in a little bit of discomfort; not sure if I had just slept awkwardly but felt uncomfortable. As only 2 sessions not expecting any issues until week 2. I’ll mention it as it has been a bit uncomfortable rather than sore during the day at work.
I was warned one of the SE may be the same type of nerve pain I had following my 2nd op in Mid November. I wasn’t expecting anything so early. Hoping I just slept in wrong postition.
Slapping on aqueous as if there was no tomorrow as soon as I get home after treatment, before I go to bed and again in morning after my shower. Have been using it since week before treatment started.
Decided to wear crop tops rather than bra’s from day 1 to hopefully reduce liklihood of my bras rubbing. Whether this will make any difference only time will tell.
Take care
Lynne
Hi.
Yes they redrew on me with their felt pens every time I went so don’t wear anything pale or that you don’t want spoilt as the pens rub off.
I just wore soft t-shirt type bras with no underwiring or seams over the breast and didn’t have any problems with soreness.
Am now feeling quite tired this week (one week on from the end of treatment)
My radiographers said that it would carry on working in the body for another 2 weeks after the treatment finishes and the onc said that I should feel well by 6 weeks after the treatment finished.
Fingers crossed1
Sky,
I too am more worried more about worsening my osteoporosis than about the cancer.
The Protelos (Strontium Ranelate) that I take has a similar effect to the bisphosphonates but has only recently been approved so it is not that well known. I don’t know if it has the same effect on bone mets as bisphosphonate though.
I wasn’t offered injections and your onc is right about the bisphosphonates tabs being a drag to take. If 3 monthly injections had been offered I might have accepted them!
I’ve got another year or so to wait for another bone scan and if there has been further bone loss I will seriously think about reducing or stopping the arimidex.
I am trying to eat less protein and more balanced meals as well. Fruit / veg with everything! Jane Plant’s book on osteoporosis explains it - though not very well.
Regards
Thanks Surfie,
I was beginning to think that I was paranoid about my spine.
I have been really naive about the cancer and assumed that i would have the op & rads and life would return to normal - not 5 yrs of drugs that damage your spine & therefore 5 yrs of another horrible drug to counteract that (with it’s own list of nasty side effects!)
The cording in my arm that I had post-op has returned this week and is getting me down - could it just be the rad that has caused it to flare up again?
I find it very difficult to accept that I was fit, healthy & active and now everthing seems to be getting worse!
Like you, I have seriously been considering not taking the Arimidex!
It might be worth you asking about the 3 mnthly injections. It’s called Boniva. I think that I am going to have to give in & have them, but it goes against the grain. x
Sky,
I imagine that the rads could exacerbate the cording. I believe the two weeks after rads finish is the worst part so hang on in there.
I declined rads because I dreaded losing function in my arm – I am the main lifter in the house as the OH is getting on. It seemed such overkill for an IDC smaller than a little boil.
Good luck with the Boniva, the strontium is supposed to do a similar job.
I was quite naive as well and it took me about 3 months after my operation to realise that this is a disease for life, but it wasn’t until the results of the bone scan about 4 months down the line that it really kicked in how damaging the drugs were going to be. (I started on tamoxifen and found the side effects like cramps in the legs and feet pretty bad but I was switched to arimidex when I got a little clot behind the eye.)
It is a year tomorrow since I had the operation and a couple of months ago something in my head ‘popped’ and I felt normal again. I have to say though that it is with grim determination that I go for a lunchtime fast 20 minute walk and in the weekends (usually) I take a 2 hour fast walk – as weight bearing exercise for my bones.
I would much prefer a lazy ride on my bike in the summer warmth but that is not the right sort of exercise, and not frequent enough. My goal is to get my weight down into the middle of my BMI range instead of just over the high end, then there will be a lot less fat to make oestrogen and I could dabble with chucking the arimidex – but alas the weight is really difficult to lose.
I expected to get osteoporosis as my mum had it and my daughter is osteopenic but to find I had shrunk an inch at the pre-op assessment was a bit shattering – especially as I consider myself quite fit!
x