Well I’m one complete cycle done and just don’t know if caelyx is having any impact. At first I thought tumours were getting softer but now I’m not so sure. The pain in my back and shoulders has contiued and is still bad. The painkillers are causing sleepiness, shaky hands…were causing hallucinations but dose lowered. And then I dont know whether some of these side effects might be the chemo. Am seeing oncologist later today.
I don’t feel well…another side effect is having a terribly swollen arm…now almost numb and unliftable…things like dressing have become a nightmare to do on on my own.
And another thing: I have skin mets on mastectomy scar which are now weeping and messy and have to be dressed daily.
As far as I know none of the issues I am facing are touched on by BCC. I’m not asking for special treatment, but it would be nice if you did a leaflet on the impact of regional recurrence.
Good to see you your post but sorry to hear your a bit of a mess, your mets on your scar sound nasty do they hurt?
I have had alot of trouble with my arm for a while now so understand how frustrating it is when you can’t do the simplest of things.
Do steriods make any difference?
I hope you have a good appointment with your oncologist. Get a few answers and a bit of clarity.
I know you have had a thing about not enough information on regional recurrence…it would be nice if there was more info but I somehow think that it would be all to brief just like the other secondaries stuff.
Don’t hold your breath.
Hi Jane,
I hope you are wrong about the lumps and that they are getting softer and will soon fade into oblivion.
We have both been cheated so far this summer and we don’t seem to be getting much relief we are putting up with the pain without much gain.
I realy have a problem with BCC why can’t they help by covering this disease at every angle surely that is what they should be striving for.
Don’t give up we have to help make change the women with this disease are getting younger all the time they have a right to know what we the sufferers know.
Love Debsxxx
You certainly seem to be having a rough time at the moment, but often this is the nature of this bloody disease, it does tend to make us feel dreadful - and that’s just the treatment - and then we seem to lift our head above water and continue again. I hope this is the case and things improve for you.
I have read in a couple of your posts now that you believe you will be dead by next year - where does this come from? Is that just how you feel, or has the onc said as much.
It is important to offer authentic appropriate support, but it’s difficult when one is not quite sure whether we are addressing an emotional ‘voice’ or a physical one.
Not sure I’ve made myself clear here. In any event I wish you well and I hope that the treatment offers you less pain and discomfort.
I agree , there should be no BC issue that is not completely covered - I too find the information currently on offer scant. I think there can be no reason why there is no info on this.
I’m sorry that my writing about my prognosis has upset you. When I last talked to him about prognosis my oncologist said I had months rather than years to live. Of course no one can say for sure how long any of us wll live…that’s part of the hard uncertainty we all live with.
I’ve re-read my post, and I still cannot see how it came to be misinterpreted. I would certainly not be upset by anyone writing about their prognosis - however disturbing that prognosis was, I would recognise that it was their right to do so, and important to keep the forums ‘real’. I was trying to establish whether this was your onc’s prognosis or your feeling about your disease.
You are right the uncertainty is hard to live with, and to some degree that does depend on many things, temperament, perception and of course the level of pain, and the progression of the disease and the disability it causes.
I do hope that the caelyx goes some way to alleviate the symptoms and development of bc for you.
I had my second dose of caelyx today. Its too early to tell if it is making any difference to the tumours. I still have skin mets appearing out of nowhere, but the lumps in my shoulder seem about the same.
I’ll probably be scanned after this 2nd cycle or after three. (A cycle is 4 weeks unlike most chemos.)
My onc…and I…both see caelyx as very much a palliative to try to reduce pain…which can be shocking at times.
Hope all goes well with your second lot of chemo.
I am still copying…my pax is 4 weekly!!!
What is it with your skin mets…I do hope they calm down.
I can’t beleive your still having pain trouble, I don’t think anyone can appreciate how grulling it can be to be in constant pain of whatever degree.
Sometimes you just need to be cut a bit of slack.
I had my third and chemo of this first cycle and I’m looking for the smallest sign that its doing something…
other than making me a little tired and emotional…
My cat who we refer to as the ‘anorexic one’ was partically ill tonight
and I totally lost the plot…
Thank god O/H is very UNDERSTANDING… the call out bill was more of a William…cat now fine!!!(O/H is in the corner rocking)!!
Sorry for the delay in replying to your point regarding BCC publication but this is the reply Diana has asked us to send you.
Regards, Jo, Facilitator
"Hi Jane,
I have talked to the publications and nurses team about the further points you have raised. Although we are adding to our range of drug treatment information all the time we do not have a factsheet on all the individual chemotherapy agents, and so, as of yet do not have anything on caelyx. Our general chemotherapy booklet does talk about some of the side effects you are experiencing though. I may be wrong but it sounds like you are describing lymphoedema in your arm, if so we do a range of information available on this.
Unfortunately we do not have information on locally advance disease, this is an information gap and is on the list for us to write and develop.
I understand it is frustrating when we do not have all the information on every aspect of breast cancer and breast cancer treatment. We are trying to build up our range and really welcome feedback on gaps and potential differing ways for us to approach how we provide information on aspects of breast cancer. Although we do not have the written information (web or print) we do hold a lot of clinical expertise in house and I would strongly recommend talking to one of our nurses on the helpline, or alternatively if you wanted to, we can arrange to call you via PM.
Thank you for your post. Yes the lack of information on locally advanced and loco-regional breast cancer is a gap in your literature and I hope this can be speedily rectified.
Cancer Reseracy UK (CRUK) provides excellent information sheets on all chemotherapy drugs, so as long as people are referred to this I wouldn’t have said there was a particualr need to write a BCC one on caelyx. By the time breast cancer patients get to be given caelyx it is probably our seventh or eighth different drug so we are pretty much connoisisseurs of chemotherapy side effects!
Yes I have severe lymphoedema which is caused by cancerous tumours blocking lymph flow. Sudden onset of lymphoedema may be a symptom of loco regional recurrence. The pain in my arm, shoulder and back is caused by pressure on nerves; my damaged voice by pressure on vocal chords; my wonky eye (horner’s syndrome) by pressure on eye nerves. Unfortunately my hospice mecidcal team is still trying to manage my pain after 4 months. It is very debiitating and won’t be solved by simple tips on lymphoedema.
I have had to find out most of the information about loco regional recurrence, including facts about the condition being in many cases like mine terminal, on my own. It would at the beginning two and a half years ago, been good to have some BCC literature to help me. There was nothing then and there is nothing now for newly diagnosed women. Our cases are unusual but not rare.
At the risk of appearing thick, could I just ask who is Diana and what is her role within Breast Cancer Care?
I was just wondering if, with the wealth of clinical expertise within Breast Cancer Care whether it would be possible to be a bit more proactive rather than reactive with regards to providing information on the most up-to-date drugs. From my observations Jane seems to have been asking for this gap in information to be plugged for a long time without success.
Thanks BoneyL and Belinda. You are spot on: what I am asking for is a proactive approach not a reactive one. I am personally a very well informed patient and your literature is unlikely to add to my knowledge now. But what about all the other women, with new similar diagnoses looking for somewhere to start finding information?
It really is dreadful that I have been highlighting this gap since May 2007…if you were this late with your pink literature I’m sure heads would roll…
Its not a new drug but an old one…they start recycling old drugs when the new ones don’t work! Another old regime which is often used in heavily treated breast cancer patients is MMM. (google to find what the Ms stand for!.)