Sorry haven't been on for a while. After being diagnosed with the return of the cancer I had ten yrs ago.
The pain got really bad and I was put on Morphine and felt totally disorientated. I was put on Movelat for constipation and completely misread the directions and took 16 sachets in one day!!
It was suggested that I go into hospital for about a week so that the pain could be monitored. I was in for 10 days. They decided to give me the radiation treatment whilst I was in, so I had 5 x 1mins.
I was put on Oxycodone 45mg slow releasing twice a day and Oxynorm 15mg for
breakthrough. I am also on Tamoxifen and Goserelin injection as my cancer is Oestragen based.
I also have a monthly IV of Pamidronate (Aredia).
I was in the Marsden for 12 days and I have to say the staff are absolutely brilliant. Nothing was ever too much trouble. It makes all the difference when it's like that. I didn't want to go in but knew I had to have more pain relief.
I've been home few weeks now. I was also on steroids for pain whilst in there but weaned off last week. I ate so much while I was on them but, now my appetite has gone completely the other way. The thought of food just makes me feel sick.
Has anyone else experienced this and is it perhaps the withdrawal symptoms?
I had to go back up this week as the pain started to get bad again. Both the Oxycodone and Oxynorm have been increased to 60mg and 20mg. I know that the aim is to be pain free but, don't keep wanting the meds increased. I'm not sure how high the dose can go up, maybe I'm not on a high dose.
Does anyone take the same meds as me. It would be helpful to know other peoples doses so I see how high it can go.
Hope to hear from any of you soon.
I was disappointed not to meet up with you. I thought possibly the day was wrong because when I asked at the desk - they said the consultant you mentioned (I cant now remember the name without going back) didnt have a clinic on tues. I was there until about 5 p.m. and met up with another member from the bcpals site for coffee. It is getting to be quite a little club at the Marsden 🙂
I found when my bone mets were first dx that pain was a real problem. It took a few rad sessions and about three lots of bone infusion before i was able to come off pain killers - i resisted the morphine ones! but really for the past 4 years i have been relatively pain free. I do hope as they get you started on the treatment things will start to improve. My next appts at the Marsden are next Tuesday, most of the day and I will be with dippykate. Then the Thursday of the following week I bring a friend who has just been dx with multiple myeloma and we go to the Bud Flannigan ward.
When I say the Marsden is like a second home to me I am not kidding. It has been for the past 17 years lol.
p.s. I keep hoping to meet you on the bcpals site so we can chat more. My photo is also on there 🙂
Don't mean to but in... but hope you two do get to meet up.....and i wish you well with your treatments.
my aunt was dx with bone mets 2 yrs ago 15yrs after BC dx...she is now on Arimidex and now takes her bone strengthning medication in tablet form at home she did originally have it via IV......I wish this kind of support was around for her when she was originally dx.......she can't believe how different things are for me than they were for her regarding support.
Is It Back Hi
(1st para to DAWN)
Yes it was this Tues gone that I was there. I was a bit late with a reply and I guessed that you had already left. Perhaps we can meet up in a week or so. Won't be there Monday so hope all goes well for you.
Was up The Marsden from 2pm til 5.30. I had to see the medical team. I was abit surprised to learn that I had to be on lots more meds than I was told initially.
I was told about bone strengthing and rediation. I did not know about Tamoxifan, Morphine plus all the anti - sickness milpar etc. Thats without the IV 's on Monday, which I think is Bone meds. Gets a bit confusing or is it just me!
Had pain clinic today and Morphine level upped from 7.5mg to 20mg.
and lots of laxitive sachets. ( that'll be fun!!)
Got MRI tomorrow to see weather I have a trapped nerve as a result of a fall I had in January. I'd put the pain I was getting down to that.
Back on the 12th to see the team.
Hi again rosebuds,
I suspect we are talking about different tuesdays judging by the timing of your post here. I was at marsden today for bone scan and thought you mean today as well.
Never mind - I am also there next tuesday but will be in the Medical Day Unit having treatment from around 12 noon till about 5 p.m. As I am attached to a drip I wont be able to come and find you but if you have time and want to meet up come to the MDU - I will be in the room with beds 🙂
Is It Back Hi Dawn
I hope you get this in time. As I said my appt is 2pm with the oncologists.
If you'd like to meet me at the coffee room in O/Ptnts after I've seen them.
Lets say about 2.40 as they might not be on time. I am wearing my hair up in a black clip and am wearing jeans with a green tye dye look top and black cardigan.
If I'm going to be later I'll leave a mssg at main reception.
Really hope you get this.
Is it back Hi Dawn
Thanks for your support.
It would be nice to meet up for a coffee and chat, but my appt is at 2pm, which is a bit of a way from yours unfortunately.
I cannot find the other website address, so if you wouldn't mind replying with it, maybe we could meet up at another time.
I wish you all the best for Tues, let me know.
Hi again Rosebuds,
so sorry to hear that your news was not so good. I do have quite extensive bone mets - in spine, skull, ribs, pelvis and shoulder for over 4 years now and it is very stable. I am on one of the bisphosphonate drugs to strengthen the bones and after the first 3 sessions have been relatively pain free ever since.
I am also at the Marsden on Tuesday for a Bone Scan - appt. 11.45. If the time is convenient for you and you would like to meet up do let me know. If you would find it a help to chat then I am also on bcpals with same nick.
Is it back? Hi all
Well, yes it,s back. I have it in my neck,ribs and spine. All a bit of a shock although I knew something wasn't right. My organs are clear so grateful for that.
Been told it's not terminal and that the main treatment is radiation for the pain. Also drugs to stengthen the bones, can't remember the name of it.
Seeing oncologist next Tues to discuss treatment.
Very hard to think what questions to ask at the time. Will jot anything down as I think what I want to know
Anyone who has had this or still has it, I would be very grateful for information & support.
Not sunk in yet.
Since Scan Pain Excruiating Hi all
Since my bone & body scan I have been in so much pain. I have spent most of my time in bed as it is less painful.
Today I rung the Marsden to ask if the Nuclear Meds have any side affects. I spoke to my key nurse and she said there are no side affects and that it was probably the condition and suggested that I get on to my GP for some stronger pain killers.
I did and was prescribed Tramadol and recommended I take Paracetamol with them.
I get my results on Weds and am more worried now than I was before. I'm bracing myself for the worst but, hope it's not too bad.
Any advice from anyone would be welcoming.
Is it back Hi Rosebuds
Hope your appointment at the Marsden went ok for you today. If the news is bad, hopefully they can deal with it very quickly for you.
By the way I was under Mr Nash too many years ago until I moved to Brighton, very nice and thoughful chap I thought.
I too had a recurrence after 6 years on the reconstructed breast and had to have further surgery, chemo etc. But 2 years on I am now 'back in the land of the living' and although not feeling brilliant on Arimidex, starting again to feel positive about the future, so there is hope, even after a recurrence.
Best of luck and let us know how you got on.
Hi there Rosebuds
I hope you had some good news today. I'm due back on Thursday. I've tried to read loads over the weekend on different sites and it 's frightening yes but its seems that our medical professionals are taking it all seriously and doing everything they can possibly do.
I read on one post that an oncologist told his patient that not everything you get is necessarily cancer.
Whatever the news - hold on to a positive thought!
is it back? Hi Jane
So sorry to hear your going through it again. I was a bit ignorant because I never once expected it to come back, even 10 yrs later.
I went for all my yearly checks. Last year I mentioned that there was some activity around the reconstructed breast. They did an ultra sound under my arm but was told it was just cysts.
I was fine up until about 6wks ago when I finally got round to having what I thought was a cyst cut out by a dermotologist Consultant. He asked if I had any more, so I showed him what looked just like a spot or a very small cyst and he wasn't concerned about it. But 2wks later it flared up into an abcess type thing for which I was given antibiotics.
Two days later these lumps appeared on my neck. I can't help thinking that having the one cut out has set everything else off.
I also have a cysty type thing on my private part and although I don't want it there I'm hesitant to have it removed just in case.
I am due to see the consultant (Dermi) this afternoon to get the results that he sent of for inspection.
I hope all goes well for you Jane.
Hello there - I'm Jane- I've read loads of your messages before but never posted until last weekend under a diffrent heading. This is what I said then -
"I had BC last June - lumpectomy, chemo and radio. Finished treatment in Feb2007. Starting to feel great, hair really looking good now etc.
Friday evening I spotted a little lump in the same breast. Its obvious and almost seems like a spot.
I went to the walk-in clinic (like a GP surgery) yesterday and he was lovely but inconclusive. Gave me antibiotics in case but suggested I get referred again.
Surely, it can't be back already?"
Since then I've been to the breast clinic and my world, like yours, has been turned upside down.
The consultant was surprised herself because she at first thought it was a spot!! The scan showed it was very much on the surface but they also found a cyst in the breast with thickening.
The initial needle test on the spot threw up a conclusion of suspicious.
They then did a core biopsy on the cyst which drained a lot of fluid and I wait for the results of that on Thursday.
The spot is also being retested.
However, we talked about removing the lump, doing bone scans and all of those other tests - thorough but terrifying.
I expected it could happen 2 or 3 years down the line but never after 3 months - I have become to think my cancer (which was stage 1 but grade 3) is resistent to chemo and radio therapy.
It's certainly a struggle isn't it and for so many people out there.
I'm very positive today - hysteria has subsided for a while as I take stock of things and move into another phase of life!!!
Take care all of you
is it back Thanks to you all for you replies.
Yes Helen it is awful.
I have bone and full body scan on Tues 15th. I often wondered what nucleur medicine was all about. Looks like I'm gonna find out.
Have been advised to prepare to be up there for most of the day. Why not take a picnic aye!!
My Son knew I had lumps but I played the biopsy results down abit.
He's flying home next Weds eve and I rather thought I wld know the outcome by then, but won't know til 23/5/07.
Are you local to Sutton?
Hallo Rosebuds Sounds like you and I have something in common, sons away, living on our own, and very down at the moment with what we are dealing with.
I am so sorry to hear your news, the waiting is just so hard, isn't it? I have found the support and comfort on theses boards beyond words, and can only hope you find the same.
Please let us know how you get on .
Hi rosebuds I know how scared you are probably feeling right now. I have lumps above my shoulder and in my chest wall which I know are a recurrence of cancer. I am also waiting for the results of scans and am very scared too.
The reason we have these scans is to check whether cancer cells have travelled to other parts of the body...cancer can travel through the lymph system or the bloodstream..that's one of the things which makes it so scary.
Another scary thing about cancer is that it can come back after many years, but you have done really well to go 10 years so far and that is a good indicator for the future.
The swelling in your arm could be a condition called lymphoedema which is very common after breast surgery and node removal. It could have been stimulated by the cysts etc. Your breast care nurse should be able to help you on this.
Thinking of you.
very best wishes
Is it back7/5/07 Hi Dawn
Thanks for your reply. I cannot believe how common BC comes back on people. I am 46 this year.
I, like Helen am under the Marsden at Sutton and am currently under Miss Roche. In 1997 I was under Mr Nash who has now retired.
I have taken down the other website address, hope this is ok, being a newbie.
I can't stand the waitng for the tests but, then on the otherhand I dread knwing.
I live on my own as I said in my 1st post, my Son is in the Army and is coming home on 16th. I hope by then I knw more about whats going on.
I have friends but they don't really know what to say as they have never had Cancer. So it's nice to have people to share the fear and anxieties with.
As the lumps are in my neck, why do they want to give me a bone/body scan??
How scared should you be? Like most of us here I doubt if you have much control over that - this is such a scarey time isn't it. Probably none of us can offer you any sort of reassurance other than that we will be here for you - to help and support you through this time - ears to bend, shoulders to lean on etc....all from people who understand what this feels like.
It sounds like you have been monitored very carefully - and now these scans are so necessary - hopefully to reassure that all is well, but if not then action will be taken very quickly for you. You have done well - 10 yrs without recurrences and if it is any sort of reassurance (?) I was dx 17 years ago and yes, I have had recurrences, but still keep going and have a decent quality of life.
We will be here for you so good luck with the scans and come and talk to us more when you need to.
love & hugs to you, Dawnhc
Is it back?? Hi all
I have started a new thread here for new user rosebuds
Breast Cancer Care
is it back??
posted on 7.05.07 11:49 am
I had BC in 1997 & ended up with a masectomy and reconsruction on my left side.. I was on Tamoxifan for three & half years and also had chemo and redtn treatment.
I have kept up my yearly check ups and although cysts seemed to be appearing in certain places on the skin surface and in my right breast they weren't too worried.
I had one of these cysts removed by the dermotology dept. The scar is much bigger that I would have expected on the size of the cyst.
2 wks later an abcess came up where a small cyst was dorment just under the skin on left breast. Then a couple of days later a big lump appeared under the skin on my neck, same side of the BC.
I had an urgent ultrasound and a biopsy done. I got the results last Weds and was told that the test was 'suspicious'. I just broke down crying I couldn't believe it. They want to do full body & bone scan and I am petrified as I have been in a lot of pain all down my left side for months and my left arm has become quite swollen in the last few weeks.. I put it down to a trapped nerve after a fall at Christmas.
How scared should I be? My Son is in the Army and have had to keep it from him til I knw more.
I have suffered depression for years and in the last year although very stressful I have been able to face life head on. Now, this. I am having very morbid thoughts and feel very down about the whole thing.