Hello, I’m new to these forums. But I’ve been on this site for information to help understand my mother’s situation. My mum was dx in 2009 with breast cancer with lymph nodes effected. Her surgery and treatment (Rads & Amridex) went well until last year. In Nov 2011 she started experiencing alot pain and tiredness - then in Feb 2012 they told us she had secondary cancer to the bones and liver. The Onc said theres a handful in the liver - for the bones it’s all around her back. We’ve been told there’s no cure but it can be managed. The Onc did not give prognosis but the BC nurse says 2years. She’s started Capecitabine (Xeloda). They have also given her steriods and bone strengthner. First cycle was 1500mg per day - then 2nd cycle reduced to 1000mg per day. She was just about to start the 3rd but her blood counts are low. They want to give her a blood transfusion - so have kept her in hospital. The other problems she’s had is dry, cracking and darkening of skin and swollen feet. She was taking cocodamal but not anymore, which we thought was a good sign but now her temp has spiked - I’m worried and scared we will lose her. We only lost my dad 5 years ago to cancer and I’m not sure if I can handle losing my mum as well. Looking for help and advise.
Thanks!
Hello rose and welcome to the BCC forums
I am sorry to read about your Mum being ill, I am sure your fellow users will be along with shared experiences and support very soon, in addition our helpliners are here to offer you information and support and a good listening ear, the lines are open 9-5 Monday to Friday and 9-2 on Saturdays on 0808 800 6000
Take care
Lucy
Hi Rose70,
I am in a similar sitiation to you well i’m 26 and my Mum was diagnosed with Breast Cancer in 2007 had a full masc and all lymph nodes removed apart from two unaffected. In December 2010 we received the bad news that unfortunatley the cancer had returned to both the Rib Bones and Liver. Like your Mum a handful in the liver and several lesions on the Ribs. My Mum is at The Royal Marsden hospital and currentlu undergoing a new trial drug which she has been on for just over a year now. Things are going well shrinkage in the Liver and no change in the ribs. Please make sure you come on here and talk I find its better to let whatever you feel out in the open. The hospital will take good care of your Mum i’m sure and if you need a chat private message me. How long is your Mum’s treatment for? Ongoing? Its a horrible disease but positive thinking goes a long way and I know sometimes its easier said than done.
Love to all and sending you a big hug
xxx
Hi there Rose,
Your poor mum, she sounds like she needs to get her pain medicines managed, not sure cocodamol would work on the pain she will be experiencing on her feet. It sounds like all the symptoms you mention, low blood count, red and swollen feet etc are all side effects from the Capecitabine Chemo. They wont restart it until her counts are up, so it may give her a well needed break. It also can feel like you are walking over hot coals on the feet and mine unfortunately started to peel and crack up. I hope they have told her to moisturise at least twice a day with a good, non perfumed moisturiser. I use Hemp from the body shop for hands and feet but others get a product called Udderly.
Check out the other bone and liver postings, they are very helpful and you will see many are managing very well, once they find the correct combination of drugs. Living 5/10/15 yrs.
Do check it out they will give you insspiration as I feel this is just a set back for your mum caused by the drugs, unless she was admitted for something else you haven’t mentioned
Take care
Clare xxx
Hi Rose, I’m Jane and in much the same situation as your mum and on Capecitabin & bone strengtheners, but having really bad side effects. Have come off Cape for 5 weeks then going onto half the dose.
There is no cure, but it is perfectly managable with treatment. Think of it as a chronic condition, not a terminal illness and take no notice of the 2 year prognosis. There are lots of ladies who will tell you that they are years down the line with their liver and bone mets.
My blood count is also low, which is normal. The white cells will come up on their own and may take a few weeks. I had a blood transfusion 3 weeks ago, and cant tell you how much better I feel. Previous to it my life was just bed to sofa and and back again.
I also had loads of temp spikes and felt really ill, and it turned out I had a urine infection, because I wasnt drinking.
The feet problem is a well know side effect of Cape and you will find all the info you need about it on this site, I am surprised the hospital havent sorted this out, as it is such a common problem.
If your mum is in pain, that needs to be a priority to get sorted, Cocodamol isnt really the drug of choice in this instant, but your mum is in the right place to get it sorted.
I know its difficult and you are scared and frightened,and its only a few weeks since this diagnosis, but try to be positive. Once your mum has her transfusion and gets sorted, I’m sure she will feel much better. Once you have come to terms with this, both you and your mum, this will become the new ‘normal’ life and it is livable, there will be numerous ups and down, which you have to deal with, but you just have to keep positive.
It may do you some good to find someone to talk to, and not bottling all this up. There is a number on this site that you can phone and talk to someone.
Hope things improve soon
love and hugs xxx
Hi Hun, I can’t tell you not to worry - you all will anyway, but we are here to “hold your hand” through this… I plan HAD 2 tumours in my liver ans one in my hip, I was premenaupausal, had FAC chemo, then lumpectomy then 6 weeks of rads. My CT scan after cycle 3 of FAC showed that both tumours had disappeared!!!..My hip tumour is shrinking every time I have a ct scan ( every 3 months)
Your poor Mum sounds like she needs lots of TLC on her skin, Potmaid mentions a very good moisturiser.But, you mustn’t forget to look after yourself… Your Mum needs you strong and capable to support her through this nightmare, so my prescription to you is…Do things which make you happy, talk to your pals and get lots of support and have the odd pamper day for you, and your Mum. Please don’t take the Oncologist’s 2 years as a deadline - with medical advances and very good treatments out there you may be pleaseantly surprised. I was diagnosed 15 months ago and doing very well,and have absolutley no intention of croaking it in 9 months!!! message me if you want…xxx
Horsie5050, You made some good comments which has made me realise a few things too.
Both myself and Rose need to take on board your comments regarding you mustn’t forget to look after yourself. Mum’s need us strong and capable to support her through tough times ahead, Horsie5050 prescription was spot on.
I have a really unsupportive fiance and for the past year I have only now become strong enough to decide enough is enough you need to think about number one and making the most of each day. I thought at first my mum would go within six months and the fantastic ladies on this website proved me wrong as well as my mum because a year and 2 months down the line she is fighting strong and don’t have any intention of going anywhere.
Love to all
Jenna x
Hi Jenna, you really must look after yourself, we don’t know how long we have on this planet, make each day a good one and make it count. I have made a conciuos( not sure i’ve spelt that correctly) to not mix with negative, pessamistic people or people who spend their time judging others… Who wants to be friends with a moaning Minnie??? Get rid of people who do not love you for who you are and will support you. Then you have loads of time and energy to spend with your pals/family who are a positive influence on you, nurture those relationships, and be so grateful for what you have…Be a good friend to those you love and as sure as eggs are eggs it will all come back to you by the bucketload.
Me - I’m on a billy-basic budget as I don’t work, but by golly I enjoy my life and love my friends dearly. Life isn’t perfect for me, stage 4 cancer and 3 young children means I have learned to cry in the shower where no one can hear me, but…Dr Horsie’s prescription to you and Rose is…Laugh, love and enjoy your life!!! pm me if you wish, I’m always about…xxx
Hi All,
Thanks for the supportive responses, these forums are a god send. I felt so much better sharing my problem and worries with you. My mum was given two units of blood and antibiotics for her cough. She’s feeling a lot better now and today we will find out whether or not she gets her 3rd cycle of Cap. She doesn’t have any pain anymore and seems to be abit more mobile.
Also I want to know your opinion on wearing gloves while preparing food. I know while handling the drugs you should but we’ve now been told by another patient she should wear gloves while handling food because of the toxic medication. What are your thoughts?
Rose x
haya. Tell your Mum that it is illegal to prepare food whilst on chemo!!! She should be lounging around on setee’s, eating whatever she fancies and being waited on hand foot and finger by you lot! she needs to be banned from the kitchen and told to rest. if none of you are around to prepare a meal for her then a luverly take-away which is delivered to the door is a second choice!
Seriously, she should be resting and enjoying some pampering from you lot, not cooking for you! xxx
Hi, I’m new to this site as of today! You all sound so lovely and supportive so I thought I would join in! I’m 29 and was diagnosed after I found the lump myself last July. Unfortunately it had already spread to my lymph nodes and lungs, I started FEC chemo in August and completed it in December but it was not effective and in January a ct told us it was now in my liver and spine too. I then started taxotere in feb and after the first and second cycles I was admitted to hospital with neutropenia sepsis, so I thought enough was enough and decided to knock the chemo on the head and enjoy the summer, and maybe try again in a few months! Luckily for me the ct i had in march showed the lungs and lymph nodes were now clear and the liver and breast Tumor had shrunk, it was only the spine that had got slightly bigger. I’m now on tamoxifen, bone strengthener, and herceptin. I was wondering if anyone had, or knows someone that is on a similar combination and how they are doing? I have no symptoms whatsoever and thanks to the cold cap I still have the majority of my hair, there are a few thin bits underneath that’s all.
Hello Pinkgem29
Welcome to the forums, I’m so pleased that you are finding it so supportive and I’m sure many of the users will be along to support you soon.
You may also find the helpline very useful. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 9.00 to 2.00.
Best wishes
June, moderator
I too have bone and liver secondaries. Getting on for 6 years (bone) and 3 years (liver). On capecitabine since Jan.2011. Good quality of life except for hand/foot syndrome. Oncs prescribe Diprobase cream but I also buy Udderly Smooth, which I find slightly better and odourless 
However, I am very concerned to read the comment above, that patients on chemo should not prepare food for other people. This kind of statement MUST be checked with your oncologist/bcn/medical team before posting.
Can anyone else give an official viewpoint please?
There is absolutely no problem in preparing food for others whilst on chemo if you feel up to it. I am on vinoralbine orally. Nobody has said not to prepare food. Just follow basic hygiene rules. Takeaways should be treated with caution , only using tried and trusted ones. It’s the fact that ones immunity is low so are more susceptible to bugs and infections.
X Sarah
Thanks Sarah
There are two issues here. One is the effect of chemo on the patient’s immune system. Regarding capecitabine, I would be surprised if every oncologist in the world gave the same advice… so ask YOUR medical team!
The other is the effect of a drug such as capecitabine on people other than the patient. My hospital’s official guidance is: (applies to oral chemotherapy generally)
“Your chemotherapy drugs should not be handled by anyone who is pregnant or planning a pregnancy.
It is safe for you to handle these drugs if you are taking as part of your treatment. However, they may produce side effects (skin irritation) if handled by others.
Relatives/carers should wear disposable gloves to handle these drugs.”
But if your hospital etc has different advice, please ignore the above!
Hi All,
@horsie5050, we’ve tried banning my mum from the kitchen but it’s not worked. She loves cooking but the great thing is she’s got her appetite back and she seems to be eating well.
@Sarah, thanks for the clarity for wearing the gloves. It’s really difficult not knowing if we’re doing the right or wrong things, especially when you’re told by the other patients taking Cap. But we did speak with the chemo nurses and yes she can prepare food but must wear gloves for her protection.
I only posted this because I wanted your opinion - was that wrong to do?
Ah well, if your Mum is happiest baking away, let her! at least you can enjoy the fruits of her hard work. I am sure you’ll all keep an eye on her and make sure that she stops when she is looking tired.
I didn’t wear gloves during my chemo, having said that, I didn’t cook either!!!..step Mum flew over to Saudi where I live and took over -it was bliss… No, you’re not wrong to post questions on this forum. No question is wrong and there is always some other poor soul who has gone through what you or your Mum is going through, it really does help to talk and for us to share as well. Take care, and hugs…xx