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February 2017 Radiotherapy

Blueleyla
Member

Re: February 2017 Radiotherapy

Hi taz123

do let us know how you get on and what if anything you are prescribed.  I wasn't unduly worried when I first got the results but am beginning to wonder if the treatment with all the possible side effects are worth it. I know not everyone gets all the side effects but we only have one set of teeth and I would like to hang on to mine for as long as possible!

Taz123
Member

Re: February 2017 Radiotherapy

I'm so glad I read this! I'm waiting for the results of my bone density scan and my teeth are already in a shocking state due to bone loss in the jaw, so thank you for the info ladies x
Blueleyla
Member

Re: February 2017 Radiotherapy

Do you know if the ladies taken adcal take it on a daily basis? I have heard there is a tablet that you take once a week. You have to wait half an hour before eating and are meant to stay standing up to avoid reflux

Blueleyla
Member

Re: February 2017 Radiotherapy

Hi Lesley 21

Thanks I think for the information. I really don't understand why they can prescribe it for 5 years of the side effect leaflet clearly state it can cause problems if used for longer than two weeks.  I have already lost one tooth and the dentist is'watching' a whole lot of other ones so I really don't want to do anything to aggravate the ones I still have . Plan to speak to the pharmacist Monday or Tuesday and so I have even more questions to ask. Please let me know how you get on. I will report back when I have spoken to the pharmacist band doctor.

Lesley21
Member

Re: February 2017 Radiotherapy

Hi Blueleyla,  Rubycat has just sent me on here to talk to you about Calceos as she knows I've been moaning about it.  Yes, I was also prescribed it, to take while I was taking anastrozole (minimum 5 years). I started taking it and whether it was a coincidence or not but I had two teeth break.  I read the enclosed leaflet and was horrified to read the warning that if taken for longer than two weeks will cause tooth decay, Also The Not taking two hours either side of drinking tea.  I know that all the others on the "fluffy thread" take Adcal, i googled that, and no warning about tooth decay came up on that.  Mentioned it to my gp on Thursday, she was really unhelpful, just said they're the same, and see your dentist!  I'm going to speak to the pharmacist in my local Boots as she's brilliant, and if she confirms that, as I'm beginning to suspect that Calceos should only be prescribed for short term use and Adcal for long term I will telephone my surgery and insist they change my prescription.   It won't be until Tuesday that I'm able to pop it there, I'll let you know  the outcome.  In the meantime I'm saving for a really good pair of false teeth xx

Blueleyla
Member

Re: February 2017 Radiotherapy

It should have said check up and the level had gone done. Predictive text can be a nuisance at times

Blueleyla
Member

Re: February 2017 Radiotherapy

Hi rubycat and susu

thanks susu, it's good to hear positive feedback at a time like this. I thinks I am still going to speak to the doctor and pharmacist before I start taking them but don't feel quite so panic stricken. I am starting radiotherapy on Thursday also have heamalytic anemia had a heck up on Tuesday and the level has gone done. The consultant thought it was due to the anaesthetic and she wasn't worried but it is something else to deal with . Also have a sick cat who is on borrowed time.

thanks rubycat I have been following the messages on the other thread, you all seem to have great fun, might pop over and join in

rubycat
Member

Re: February 2017 Radiotherapy

Wish I could take a leaf out of your book Sue. Can't keep a lid on my panic at certain times, but will put my big girl pants on!! And take care of you tooCat Very Happyxxx

susu
Member

Re: February 2017 Radiotherapy

Hi Rubycat, mine should be middle of May so not long after yours. I view it as just another appointment to go to and am not anticipating any issues to arise. I am still trying to resolve severe nerve & tissue pain with little success so far so am concentrating on that for now.  Take care  Sue x

rubycat
Member

Re: February 2017 Radiotherapy

Thanks Sue, yes it does help.Cat Happy  Will be getting my knickers in a twist in April, when the first 2 year scan will be done.  When will you have yours? Cat Very Happyxxx

susu
Member

Re: February 2017 Radiotherapy

Hi Blueleyla & Rubycat, like you both I was shown to have osteopenia at my initial bone scan almost 2 years ago now and advised to take calceous. I have taken it twice a day, 7am and 7 pm, ever since with no noticable affects to my teeth regardless of what and when I eat or drink. This is my personal experience and not a medically based one but I hope it helps.  Sue x

rubycat
Member

Re: February 2017 Radiotherapy

This seems to be the nature of the beast Blueleyla - everything happens at weekends!  Even though I'm further down the line, things still happen which absolutely flaw me and send me into the panic mode of first diagnosis.  But on here you will find so much kindness, knowledge and understanding.  If you fancy a bit of light relief, we let loose on the Progesterone, assorted other hormones and fluffy cake in the Going through treatment, hormone therapy strand. Come and join us on there. Cat Very Happyxxx

Blueleyla
Member

Re: February 2017 Radiotherapy

Thanks rubycat for the reply. why do these things happen late on Saturday when doctors etc are shut? I have already decided I am going to speak to the pharmacist on Monday and see if I can get another appointment with a doctor before I start taking them. It won't be my one as I will have to wait two weeks to see her but hopefully another one might be able to reassure me. Also I'm not really a hypochondriac! I like to be in control but feel it's just one thing after another been thrown at me.  I am on  Letrozole and thought I was ok re side effects but am very emotional and tearful this weekend which doesn't help. I am so glad I found this site 

rubycat
Member

Re: February 2017 Radiotherapy

Hello Blueleyla - I'm the same as you with osteopenia, but take adcal d3 not calceos (basically it's the same thing).  I'm now 18 months on and had exactly the same dilemma at first as to when to take the b tablets, also making myself wake up at the crack of dawn to take them.  Asked my doc, who said not to worry about what you are eating 'as in care homes, they give them out anytime' - made me feel every year of my aged 63.Cat Indifferent  Also asked dentist, as I'd had two cracked teeth, but she said it wouldn't be the adcal. Also spoke to pharmacist (I'm not a hypochondriac, really) who said I could take the two tablets at the same time!! So don't panic - I know Lesley, on another thread, takes calceos, so I'll ask her to come on here.

It is a lot to cope with this cancer malarky, but we are all here to help each other, so big hugs to you.Cat Very Happyxxx

Blueleyla
Member

Re: February 2017 Radiotherapy

I probably should have said that after the bone density scan I had osteopenia and that I should take calcium and vit d tablets. Is it worth taking these tablets? Had heard that they could cause problems with teeth but when I mentioned it to the doctors she said the daily ones were fine. The leaflet would indicate otherwise. Thought I was dealing with the cancer but it is everything else we have to contend with.

Blueleyla
Member

Re: February 2017 Radiotherapy

Hi 

Has anyone been prescribed calceos tablets? I have just got my first prescription and have read the side effects. Long term use(for two weeks or more) may be harmful to teeth. I am meant to take them, for 5 years. Also they react with certain foods, tea, cocoa, chocolate, cereals to name but a few and they say you should not have these foods 2hours  either side of taking the tablets. I either have to take one at silly o clock in the morning or give up my cup of tea.  Feeling very weepy, probably the result of the Letrozole I know but feeling very very down. 

Taz123
Member

Re: February 2017 Radiotherapy

Optimissy I'm really pleased for you ☺

Jo I had a similar experience, I think I posted on the winter warmers thread though
7oanne
Member

Re: February 2017 Radiotherapy

Hello everyone,

 

First of all Well Done 🍾🎉 Optimissy64 it's soooo nice to hear that you completed your rads and didn't have too many SE. It gives me some hope and confidence that maybe things won't be that bad after all.

 

I would like to thank Patriciamay,Ann-m,Ladybowler and Kimjane also for there kind response the other day when I was feeling quite down and anxious, I think it was just a bit of a shock as the oncologist suggested it would be a walk in the park ( I don't know what park he goes to ) any how Thank You 😘Jo x

Blueleyla
Member

Re: February 2017 Radiotherapy

Thanks I feel quite jealous of all you lovely ladies who have already started , want to join the fun!!!

Optimissy64
Member

Re: February 2017 Radiotherapy

Good luck for next week Chealseagirl65 and also Blueleyla. I feel like I'm in the Big girls' class now instead of the infants.
Optimissy64
Member

Re: February 2017 Radiotherapy

Thanks Kimjane and Helena - I can hear them from here - thought it was tinnitis....

 

Good luck for the 16th Kimjane - it'll be good to get another box ticked off this list of things we have to do.

ladybowler
Community Champion

Re: February 2017 Radiotherapy

Optimissy

 

Hey well done and here are the ding dong bells for you as well.

 

bell.jpg

 

Helena xxx

Kimjane
Member

Re: February 2017 Radiotherapy

Optimist .... ring the bells ... yeah .. well done!

start mine 16th ...

Optimissy64
Member

Re: February 2017 Radiotherapy

All done - last rads session today- hurrah. Now for that s*dding Anastrozole.....

chelseagirl65
Member

Re: February 2017 Radiotherapy

I got my first session on 14 February.... so a pre Happy Valentines to everyone Heart

Optimissy64
Member

Re: February 2017 Radiotherapy

Ah thanks Helena. I see. Will certainly ring mine this afternoon when i get back. (Does playing a little tune on the full and half-full wineglasses this evening count?!!)  🙂 Should be finished by 2 pm so please do that ringing thing for me.

ladybowler
Community Champion

Re: February 2017 Radiotherapy

Patriciamay

 

I am so sorry that you are troubled and upset at the moment, can I help at all, if you want to pm me please do so, obviously I will respect your decision if not, but I am worried about you.

 

Helena xxx

ladybowler
Community Champion

Re: February 2017 Radiotherapy

Optimissy

 

It was something started by one of the ladies on the radiotherapy threads, if I remember correctly and it was a while ago, when she finished her radiotheray at her hospital they had a bell on the wall that they would ring when someone finished and it is something that the ladies on here do when someone has finished rads they will go out and ring their doorbells in celebration.  I must admit I have had some interesting looks when I have gone out and rang mine, the postman especially thought I had lost the plot, but then I explained it to him, dont know if he really got it but hey ho.

 

So we virtually celebrate on here when a lady finishes this part of their treatment 🙂

 

Helena xxx

Taz123
Member

Re: February 2017 Radiotherapy

I love Cheap Flights too

Sorry you're leaving us patriciamay, hope you reconsider ☺
Optimissy64
Member

Re: February 2017 Radiotherapy

Thanks!!!

 

Got some drinks with friends lined up for tomorrow night as haven't had a drink since N Y Eve - think it will be a delicate little spritzer (or several) for me else I'll be legless after such a long abstinence. Can you explain about the ringing the bells thing - Just a celebration at the end of treatment I guess? 

 

By the way, I love the Fascinating Aida Big C song on one of the threads. Their Cheap Flights is one of my all-time favourites but this comes close.

 

Night night.

ladybowler
Community Champion

Re: February 2017 Radiotherapy

Optimissy

 

Well you need to come on tomorrow because we will be ringing the bells and celebrating your finishing rads, yay ;0

Optimissy64
Member

Re: February 2017 Radiotherapy

Hi Blueleyla

Just to say that I have my final rads session tomorrow and no side effects at all, to the extent that I asked the radiographers if the machine was working, having read so much about what to expect before starting! I do understand that the effects can start AFTER the last session, so am prepared for it, but everyone's experience is different. Just drink gallons of water - I've been peeing for England - and slap on moisturiser afterwards.

Feel some empathy for Patricamay on this thread, as when i first started reading posts it frightened me to death and I started to worry about things that I hadn't even thought about before, whereas right from diagnosis and surgery I had felt postive and lucky in my cancer having been identified at an early stage and genuinely (honest!) relaxed about it all.

 

 I've made a decision to only read the posts that contain informationi relevant to my own situation and to resist the temptation to read about things that don't concern me.

 

Someone on an earlier post said that people who are not having too many problems tend not to post, it is the folk who are struggling who post to ask for advice and support, and i think  this is probably the case. This is only my second post, though I've been lurking about for weeks reading stuff I would probably have been better off not reading! I blame my own curiosity not the Forum. (And I hope to be able to be postive about the forthcoming Anastrozole, but not holding out too many hopes about that.- can't help thinking the surgery and the rads will have been a walk in the park compared to this final stage 🙂 .....) .but thanks to this forum I've bought a Ladycare Magnate so we'll see how that goes.)

Thanks for all the useful tips and good luck to Patriciamay whatever you decide to do.

Blueleyla
Member

Re: February 2017 Radiotherapy

Thanks Donna I start radiotherapy next Thursday so am a week behind. I know from other threads that some ladies do have problems but like everything not everyone has the same experience. I am focusing on 9 March when I will have finished the radiotherapy.  Not sure what happens after that, are we just sent on our way until the yearly mammogram? I think that is when I shall start to worry. I also have haemolytic anemia which has been affected by the surgery and will probably be affected by the radiotherapy so will probably have to have treatment for that once radiotherapy finished. And there was I thinking I might be able to avoid hospitals for a while. Not quite how I had planned my retirement!

RunningMum13
Member

Re: February 2017 Radiotherapy

Hi ladies, so sorry to hear the distress some of you are going through at the moment. We are all here to support each other so please reconsider leaving the forum, we can do it together!

 

Regarding the radiotherapy, as has been mentioned all side effects, no matter how tiny, have to be stated, think of the list of them on our daily tablets! The benefits outweigh the risks, otherwise the treatment would not be offered.

 

I've been for my first session today and there is absolutely nothing to worry about, most of the time was spent (gently) manhandling me so my tattooed dots were correctly aligned. I was given some aqueous cream to use to wash with rather than moisturise, the staff look at the condition of your skin at each session so will quickly see if any other moisturiser is necessary.

 

We can do this ladies!!

 

Sending you all a big hug

Donna.xx

swampy1901
Member

Re: February 2017 Radiotherapy

Hi Patricia

 

I hope you will reconsider and stay with us. The nature of this horrible journey means that there will be down times, negative times and good times too - which is why I feel it's so important to all of us to be able to chat and let off steam. 

I don't know what has upset you but we are always here for you.

 

Hugs xx

Kimjane
Member

Re: February 2017 Radiotherapy

Hi Patricia

 

i am so sorry you are in such a bad way ... I think having negative times is part of the course with events in our lives and we support each other.  If you would like to chat via email just let me know xx

Patriciamay
Member

Re: February 2017 Radiotherapy

Thank you -

 

I am really really upset at the moment, about something I have seen.

 

My oncologist has been very clear to me about my prognosis and I want to retain my positive outlook, and you lovely lot don't need anyone being negative.

 

perhaps I will take a break.

 

xxxx 

Kimjane
Member

Re: February 2017 Radiotherapy

Dear Patricia

i am sorry you are feeling so distressed and unsupported on other threads.  Perhaps you may reconsider but if not best of luck and will be thinking of you xxx

Blueleyla
Member

Re: February 2017 Radiotherapy

Dear patricamay

 

i am so sorry to hear you are leaving the group. I am sorry you have found some threads distressing. I have to say I haven't really read many of the other threads apart from one that lady bowler posts on. That one seems to be a hoot! They are always posting. Perhaps you might reconsider and stick with this thread. It's good to be able to post how we are feeling as we are all going through something similar and can empathise with other ladies.

 

if you don't come back I would like to wish you all the best for your radiotherapy and the future.

love

stephanie

Patriciamay
Member

Re: February 2017 Radiotherapy

Hi all

 

I just wanted to let those ladies who are on the radiotherapy gang for February, I am going to withdraw from being atively involved in this forum.

 

I am finding that some of the posts (not on this string), but else where very distressing, and some of them are actually in-accurate, so I have decided this isnt the place for me.

 

I do wish you all the very very best.  I feel quite distressed while writing this, as I wonder where I can get some support.

 

Good luck to you all.

Kimjane
Member

Re: February 2017 Radiotherapy

Hi Runningmum ... hope your first session went well today x

Kimjane
Member

Re: February 2017 Radiotherapy

Hi Jo ... like you I was upset after my oncologist explained possible side effects from radiotherapy... came on this forum and was guided by the ladies.  The side effects don't apply all the time everyone is different.  My treatment is to the left so they especially pointed out heart etc.  As Patricia mentioned I have also taken risks all my life ... cycling without a helmet, dashing across the road and not using a crossing, drank excessive alcohol at times, too much sugar and so on.  Pleas don't worry I am sure we will all come through this time of our lives and I can't speak for others but certainly I feel more compassionate and have a clearer view of life, so this has to be a good side effect x

Patriciamay
Member

Re: February 2017 Radiotherapy

I feel angry. Bedtime I guess. Night all
Patriciamay
Member

Re: February 2017 Radiotherapy

Well I am going to say no one took me through all the risks it was a bit brushed off if I'm honest.

ladybowler
Community Champion

Re: February 2017 Radiotherapy

Jo

 

Your oncologist should have gone through all the side effects and given you a booklet.  Can you give your bcn a call tomorrow and ask her if there is anything she can help with this she may well be able to do something and provide you with the booklet

 

Helena xxx

ann-m
Community Champion

Re: February 2017 Radiotherapy

hi Jo,
Just popping in.
Like anything to do with treatment, all side effects have to be listed, no matter how rare. Sorry to hear this wasn't discused fully with you in the first place, then to find out subsequently can feel quite alarming.
The more serious side effects are rare, but far more outweighed by the proven effect of reducing recurrance. Without rads, the risk of recurrance would far exceed the risk posed by rarer side effects.
ann x
Patriciamay
Member

Re: February 2017 Radiotherapy

Hi running mum good to hear you are up beat, I didn't know that about the first appointment so that's really helpful. Xxx

Patriciamay
Member

Re: February 2017 Radiotherapy

Hi Jo

 

its an extra worry for you having moved over from chemo, I am astounded at times on the amount of time the oncons offer to us, seems wholly insufficient at times.  In terms of your question about risk. I'm going to comment on my personal approach - so really doesn't work for everyone.

 

at one stage in my treatment plan I forced the surgeon to recommend to me their advise.  They aren't supposed to do that, or like doing it  as everything is meant to be informed consent and choice by the patient.  I needed to trust her  and asked for opinion.  I've taken the same approach about risks, weighing up the risk of  receiving the treatment and it's encombant side effects.  As you will know all the risks have to be laid out to us, but my thinking is I have taken risks all my life.  I have laid in the sun without protection, I have ridden my bike while in the phone, I have eaten far too much sugar in my life, and most definitely too much alcohol, at times.

 

The risks have to be listed, it's a shame they don't put % by each one, but I think that is just impossible as the risk factor is different for each body.  Sorry I've gone on, in conclusion, I did think about the side effects for RT, in particular the skin cancer, and for me the risk is far outweighed by the benefit I am going to get.   I also feel that I am much more conscious now about my body, and likely to get care immediately if I thought something was wrong.   Not sure I've helped, but I do know what you mean.  Xx

7oanne
Member

Re: February 2017 Radiotherapy

Hi Everyone,

 

I have just had the first planning meeting about my forthcoming Radiotherapy and I am now feeling quite depressed.

 

At the consultation with my Oncologist last week, he said that because it was too risky to carry on with the Chemotherapy (due to Peripheral Neuropathy), he would set the ball rolling for the Radiotherapy. He said that it would be like a walk in the park compared to the Chemotherapy and briefly mentioned that I may have some burning feeling in the area as well as feeling tired for a while but nothing else.

 

When I saw the Radiologist today, she explained a bit about the procedure and then said that it was on my notes that it had been explained to me about the side effects - both the short term and permanent ones! None of the permanent stuff had been talked about before and I was quite shocked to know that there may be permanent ones!

 

The radiologist was not in a position to tell me about them and said that it should be explained by the Oncologist. She did let me see the pink 'Consent' form that she wanted me to sign though and that listed them - Lymphadema, Radiotherapy Induced Cancer, Scarred Lungs and Heart Trouble were some of them.

 

As the Oncologist wasn't in until next Monday, the Radiologist offered to defer the meeting until next week so that I could have a consultation with him but I have been so anxious about today and to have it deferred another week would have been too much as I had been building up for today - what else would the Oncologist say anyway apart from what I saw on the pink consent form!

 

I need to have the Radiotherapy and therefore have to sign the form in the end but it worries me about the permanent side effects and if they are really anything to be concerned about in the first place or whether they are just listed as a matter of principle.

 

It has been left at the moment that I have now had the CT scan and the three Tattos and I have been given a set of dates for the 15 days of Radiotherapy starting on 1st March, but I still haven't actually signed the consent form - whether they forgot to follow it up and ask me after the scan, or that they want me to sign it at a pre-radiotherapy meeting in a couple of weeks.

 

I am feeling (yet again) that I had been rushed by the Oncologist without everything being explained properly. My last consultation was more about why he thought it best to stop the Chemo and the Radiotherapy part was just a little informal chat at the end.

 

Can someone give me a bit of consoling support about the permanent side effects and whether they are something to be worried about?

 

Jo xx

RunningMum13
Member

Re: February 2017 Radiotherapy

I'm at St James's in Leeds, it's a long shot but just wondered if anyone else is on here? Xx