Aggy.........a huge weight off my shoulders too! I admit I was a bit worried too, but deep down I had a feeling the onc would have given it all a bit of reflection, particularly after the successful surgery. Also we have to remember they are humans too, with bad days, off days, and less than perfect advice. That’s why it helps to be as well informed as possible, and you seem to be that sort of person. You might even be expected to have a view on the choice of chemo, so again being well informed will help. Whichever the other one was there should be a thread here somewhere to browse. People are wonderful with sharing and helping, so use it!
Take care, and I’m so pleased that the appt today went better than expected. That’s one advantage of dreading something..........it’s usually never as bad as we thought! Your mums treatment plan is slowly unfolding.
Best wishes to your mum, and hugs to your little ones,
Just a quick update afer hospital visit, huge weight of my shoulders as there will be further treatment 🙂 you were totally right and I guess I was just panicking 🙂
Onc still didn't tell us what it will be exactly, but they are thinking about cape or different drug given as an injection... didn't catch the name as i was stressed out, but they will post us some leaflets so we can have a read about it all.
Ohh and the onc was like a different person today, we even had a little bit of a laugh and joke 😉
Thank you again for message in the morning, it made my day at work easier 🙂
Hugs, Aggy and mum xx
Good Morning Mo!
Thank you for replying, I’m so nervous before appointment today, I hardly slept... but your message helped a lot,
I think all my worries began after last appointment with the onc, he was so pessimistic about everything, I do hope today he will be more positive, maybe he didn't think surgeons will be able to do so much?
Aaa, we shall soon find out,
I’ll let you know as soon as we get home from hospital
xx have a lovely day, so nice and sunny today 🙂 xx
Aggy........a quick reply after reading your post this morning. I fully understand your worries. You and your mum are obviously close and your worries are natural............but also mean you are there to fight her corner and support her. So it is working for her.
You are concerned that the onc won’t want to start her on chemo. Personally I don’t think she would have been given the brain surgery if there seemed no way forward beyond it. And she is moving further on with the radiotherapy. Why would they bother if there was no way forward? If the onc is unenthusiastic............heavens knows why............this could be gently but firmly pointed out to him. Your mum absolutely deserves a chance on chemo and it is t he onc’s responsibility to give it to her. They don’t have crystal balls when they give a prognosis. She also has the option of a second opinion, which is not unheard of on these threads. The marsden comes to mind. And it is the onc’s responsibility to arrange that for her. But this is all the worst scenario. If two chemos have been mentioned already then I think that is the way it will go. So much has been achieved already! Why would the onc waste it?
anyway, I won’t drone on. I’ll be thinking of you tomorrow with fingers crossed. I’m pretty sure it will be fine, and I hope cape is the choice for her as it is ‘doable’. But people cope on others too. Let’s wait and see. Also she could start on it then have the radiotherapy during a week off, with one more week off perhaps. All things are possible!
So sorry to hear you’ve had some complications... and glad to hear you’ve had a nice time with Anna 🙂 I know what it’s like, my older daughter is very similiar, prefers to stay at home than go out, but she has got selective mutism so going out can be quite challenging for her, which doesn’t mean we’re not having enough fun at home 🙂
thank you so much for all the tips about cape, at least I know what we can expect if this is oncologists choice, to be honest, from what you say it does sound like it’s quite managable, which is a relief, as mum already has enough to deal with. I have been telling her that we talk on the forum, and she is very grateful for that, she knows how hard it is for me to deal with emotions.
Tomorrow we are going to see mums oncologist (first time since appointment before surgery), I am so nervous what we’re going to hear from him... last time he wasn’t very optimistic , he even said there may be no treatment option, so I’m super nervous... if this is the case, I think we will just completely fall apart.... that would be the worst nightmare.... I think, as long as you’re receiving treatment you have hope, what if they won’t give my mum this option...
I do hope we will have some answers soon, next week we’re also going back to Oxford for mum to have the mask prepared for brain radiotherapy, and than the first session will be at the end of May... just keep thinking, would they do so much... surgery, radio if there wasn’t a chance for her to receive chemo for her lung and kidney ?
Thank you again for explaining everything about cape so well, and in general for being here to answer my questions and being so supportive, it really means a lot!
Aggy.........first of all apologies for my slow reply, but I’ve had a few complications. Nothing much. I had my little Anna to stay with mummy last week.......half term.......and we had fun. She doesn’t really want to go anywhere, just play at home. Even though she is 7 now she still loves the paddly pool and sprinkler! I have a beekeeper friend so we went and dressed up as astronauts to look at the bees. We had fun.
you ask about capecitabine, and I know exactly how you and your mum will feel........a new drug, a chemo drug. It has to be said these drugs are broadly cytotoxic, and kill good cells as well as bad. They all try to kill off actively growing and renewing cells and that includes the whole lining of the gut from the mouth to the other end. This can mean sore lips, mouth ulcers, diahorrea, upset tummy, the lot! But the reality is that everyone is different, and there is a whole spectrum from those with little side effects, to those struggling. But there are things to help.
But as you say the thing is to be prepared. I had docetaxel last year and learnt about loperamide (immodium) for the big d which worked well for me. I eventually took it in anticipation, rather than waiting for an episode. That worked for me. I do get a little d now but not until my week off, and it is not catastrophic, but I do take some loperamide, even at bedtime to anticipate what I have learnt will happen in the morning. Works. But it has only happened in the week off, and not bad. Remember cape is taken as pills every day so the concentration builds up over the two week on. Then you are at the most concentrated in the one week off. So many people have ses in the weeks off. Docetaxel was IV so you get the full dose on day one if you like, and the ses decline into the third week when you feel better. I have had no sickness on either, but there are anti sickness pills which your mum should be given at the start, just in case. I was given cyclazine but have never needed it on either docetaxel or cape.
Hand and foot foot syndrome is typical of cape, but I haven’t been too bad. You can get very sore and peeling feet and hands. For me no foot problems........yet..........but sore peeling fingertips which aren’t too bad. I got in several creams........flexitol for feet which is 25% urea which is good. Even if your mum doesn’t have a problem I have read that it’s best to keep moisturising anyway, which I do morning and night. For my hands I use different things........neutrogena, E45, savlon, anything. Many people recommend Udderly Smooth extra care, only available from the USA via amazon. It has 10% urea. I have some Elastoplast for when I get a split fingertip, but again nothing catastrophic.
You don’t lose your hair on cape, so no need for haircuts!
in the first few days of cape I found getting up in the morning hard, with dizziness and almost blacking out. I learnt to take my time, drink water before getting up and having a few choc drops! It passed, but possibly because I drink a lot more now anyway. It may have been dehydration. I now have the kidney stent so need to drink lots for that to avoid infections.
what else? You should remember that your mum may find cape quite doable. It is known to be doable. Her dose is worked out from her height and weight. Many women carry on almost as usual, taking care as they go. There is the BCC xeloda/capecitabine thread on the secondary ‘treatments and medical issues‘ pages which is very informative. But always remember that people who have few issues usually don’t post on threads, so don’t be too put off. I am coping very well on cape. I just hope it is working! I’ll know after my third or fourth cycle when I have a scan.
So.........stock up on loperamide........ask the nurses or onc when she is starting it. Your mum will have an advice session when she is given the tablets. Immodium a bit expensive from the shops. Get in creams and moisturisers and use them from the start. Ask for a mouthwash, although salt and water work well too. But there are numbing mouthwashes. For any mouth ulcers.........I had only one in cycle one.........I find iglu so good. Discovered it on docetaxel. Every chemist will have it. A bit expensive, but lasts as you don’t use much, and it works.
sorry to go on......and on. But hopefully I can give just those few tips. I have managed very well on cape. I didn’t like the huge pills.........well, only the size of a paracetamol capsule........but have got used to that. Big gulp of water! Stock up on the above......loperamide, creams, iglu....while always remembering your mum is unique. If she has any odd reaction then call the onc sec, or the Macmillan nurse, or the chemo unit. She should be given a triage number too. She must never suffer in silence. Some have to go to hospital for rehydration, or IV antibiotics for example. It may never happen. But they have things up their sleeves!
Do take care and give your little ones a hug from ‘a friend’! Let me know which chemo your mum goes on. I’m interested. Cape is very common so she isn’t alone!
I hope you’ve had a lovely Easter weekend with family and friends!
Weather was so lovely, we didn’t do egg hunt as Hanna was really poorly with flu, but Amelia and I managed to renovate their wendy house in the garden, girls absolutely love it and it was so much fun.
Thank you for advice about nutri drinks, seems to do the trick, even though mum is still recovering from op and the virus , she seems to be a little better 🙂
As the doctors are thinking about putting mum on capecitabine, would you mind sharing tips on how to cope with it? Any side effects we can try to avoid? How are you feeling on it? I would like to prepare us as much as possible in case cape will be the choice of mums oncologist. I know everybody is different, but it’s always good to hear from someone who experienced it already
Aggy...........what good news about your mum and her recent brain op! The surgeons involved seem to have done an amazing job. And the decision to localise her forthcoming radiotherapy must be the right thing. People do have full brain radio, but of course it can be damaging so they are doing what is best for her. After the success with the removal of the tumour then local treatment as a backup makes real sense now. I hope you have some success with getting the nutri drinks. I was also prescribed complan, and in fact the ‘original’ non flavour one was very good to mix into mashed potato! It must give a boost! With a low appetite every little helps.
But I can see your mum has the most important ingredient in all this.........you, and a supportive family, including your two little girls who must give her such pleasure. Grandmas love the little ones! Really this is just to wish you and your family a Happy Easter, and perhaps a fun egg hunt with your girls! You are learning such a lot on this cancer journey, not least that there are wonderful treatments out there, and caring hospital staff.
happy Easter to anyone visiting the threads today. Lovely sunshine here in bucks.........getting almost hot! I bought some baby factor 50 sun cream yesterday. Now I’m on capecitabine my skin is apparently super sensitive to the sun. Never used it before........rather sticky!
Awww thank you for advice about nutri drinks, I’ll call her GP in the morning, that propably will help a lot as mums apetite is not great at the moment.
We went to see neurosurgeon today at JR, such a positive visit. He showed us scans from before and after surgery... it’s absolutely amazing what they’ve achieved, I’m not joking, tumor looked the size of a small apple, and they’ve managed to cut it all out...
The surgery went better than they hoped for he said, also today decision was made not to do whole brain radiotheraphy, instead they will only treat the area where tumor was, I am so happy about it, I was so worried about side effects of WBR. Soo today definitely all looks so much better for us 🙂
We also went to see the nurses that looked after mum before and after op, so that was another highlight for mum, she was on the ward for nearly 3 weeks overall , so it’s just like visiting friends
thank you again for advice, hope you are well 🙂
Thanks aggy........it’s just nice to know how it’s going for your mum. A great pity about the virus, but at least you can be pretty sure that is what is causing her to be a bit down. But that will pass. Does she have contact with a Macmillan nurse? She might be able to prescribe ensure drinks for her recovery phase......very nutritious...........or advise her GP to do so. It all helps. I don’t know about carboplatin, but I am on capecitabine at the moment and find it quite manageable so far. There is a busy and very informative cape thread to visit if her plan goes that way. They are giving her time to recover before the chemo decision. Continue to be patient at this very difficult stage, and I hope that virus moves on quickly.
Take care for now, and thanks for the update,
Hi! She’s been feeling low last couple of days, as our whole family has been fighting some nasty viral infection... so not ideal when she has to recover from her op...
Tuesday we’re going to JR Hospital to remove her stitches and than an appointment with oncologist on the 30th, I hope they will have some treatment plan by than as waiting for it is so hard... we received a letter from last onc appointment, and it says they are thinking about putting her on Carboplatin or Capecitabine , ohhh how I wish we would be told already... It will be much easier to cope when we finally know what they will do and when...
thank you for thinking of us, I hope you’re doing well , I’ll update how Tuesday went
Aggy........just to say I hope things are going well for your mum. She sounds a determined lady so I’ll bet she is focused on her op recovery. So sending best wishes.........I’m sure you are busy with mum, and your two lovely little girls, so don’t worry about a reply. Just thinking of you.
Such good news aggy! Your mum is made of strong stuff! Walking, and eating well...........both so important for recovery, so she is on the mend. At the same time she may have tired days too............so don’t worry. And she is right for you to have the gene test. It shouldn’t be difficult to arrange through your gp. I have friends who have done it. If there is a genetic connection it is best to know. Particularly as you have two little girls. I didn’t know about little amelia. You have your hands full! I have a little granddaughter, Anna, who is 7. Full of energy! A chatterbox too!
you are taking good care of your mum, aggy. And it is so good that she has you to oversee her future treatments. There will be appointments to come. But for now she has come through her brain surgery. As I said before, one thing at a time. All the best for now. I’ll be checking here in case you have more updates.
Thank you so much, every sigle of your replies gives me so much courage...
that there is life after secondary diagnosis,
and that so many women live with secondary breast cancer, and that the doctors don’t give up on people ,
and I’m so grateful for that.
I’ve had a long chat with my mum today, she really wants me to try get my genes tested (I have a strong family history of bc and ovarian cancer from both mums and dads side), so I shall be calling my gp next week to try and get that sorted as soon as possible. I do hope that they will be willing to test me, as I’ve got two beautiful girls to raise (Hanna 18 months and Amelia 6 years old) and I really wouldn’t like them to have to go through the same pain I’m going through now...
And on a positive note - mum is doing great, we never thought she will feel so well after brain surgery, but she’s already walking by herself, no need for help from the nurses, she’s got good apetite (although she’s on steroids so that’s partially the reason) , her speech is getting better and better, so finally a little bit of hope for us.
And you’re totally right, once the treatment starts it make things slightly easier to cope with.
Wonderful news aggy! It does make things better when treatment starts. As you said there will be further plans later but your mum must recover from the brain surgery first. One thing at a time. There will be meetings to decide the best way forward next. That will depend on whether she is oestrogen positive etc which will determine which drugs or chemos will be appropriate for her. Many treatments are quite manageable .......wait and see. She is at the beginning of a journey. I hope she recovers well..........she will need a bit of time. I assume she will be kept in the JR for a while. They will look after her. It is a good hospital.
take care. Hugs to your beautiful little hanna!
Just a quick update from us, mum had her brain surgery today, it took the surgeons 5,5 hours but they managed to get it all out! We now have to wait till she gets better after the op and hopefully oncologist will have some plan how to try and sort the rest out...
I’m so happy I’ve decided to write on this forum, and thank you so much for your reply, it’s so amazing to be able to talk with people in similiar situation... mums onc is from Churchill, that’s where the radio will be, and brain surgery (if they decide to stick to this plan) will be at JR in Oxford, and we live in Bucks as well, so hello neighbour 🙂
I just felt so down after this appointment today... As you’ve said, docs are humans at the end of the day, and they’re all different, first oncologist we spoke to, was full of energy, when I told him we know there’s no cure he very quickly stopped me to say that it doesn’t mean they won’t be able to slow it down significantly, so I think todays onc took a bit of hope from me with his slightly pessimistic approach , but hey, life goes on, we’ve spent all day in our garden and had a long chat about how mum stays positive, and she promised me she won’t give up without a fight.
Hope you’re well and enjoying the lovely weather we have at the moment
Aggy......this is just a quick reply. I think you are still in the waiting room with your mums treatment, if you see what I mean. Obviously the oncs, surgeons and radiologists have not quite settled their way forward. They do discuss patients and use experience as well as knowledge......MDT meetings.......but it can take time. Also cancer is not that simple. They weigh up choices. They want to do the best thing for her brain mets so it is good that they aren’t just plunging in. The same with the oncs. And being human some of them don’t put things very well. I’m sure there is a way forward for your mum, but it may take a bit more time. She unusually has 3 situations.......lung mets.......the kidney........the brain mets. The latter need separate consideration.
i am not in oxford but my onc is based in the Churchill. He comes out to my hospital 2 days a week. I live in bucks. He is very nice, but I too can find him pessimistic at times. After 5 years I am getting used to it!
so stick in there, aggy. I do hope those various doctors will tie things together very soon. Just be patient. At the same time I do understand. For you it is in a way harder that it is your mum and not yourself. She is a lucky mum! The doctors are juggling the treatments and will come to a way forward.
Hugs to little Hanna,
Hello again ladies! We just came back from the appointment with oncologist, I feel more confused than before... sooo kidney is most likely unrelated to breast cancer (which I suspected) , they are now re-discussing Thursdays surgery for brain met, maybe they will stick to surgical removal of the lesion, maybe they will offer radiotherapy only, we shall find out tomorrow... now, first oncologist we saw in Oxford, was very possitive in terms of explaining everything to us, he told us that even though they won’t be able to cure the cancer, they will be able to slow the cancer as much as they can, that there’s chemo and possibly some other drugs that could help. Now, todays oncologist said they will have to see whether chemo is an option as it could mean no benefit for mum. I just feel so down, the oncologist literally took all my hope away when he said that. I’m not stupid, I know mum won’t be cured, but saying they may not be able to try and treat her literally killed me....
Mo, thank you for replying, it’s so encouraging to know there’s people willing to give advice and support and I’m so grateful for it... I hope we will get more answers from doctors on Monday...
Abby, welcome to the threads and I hope you find advice, facts and support here.
I also know that kidney mets are rare.......almost unknown. I was found recently to have hydronephrosis of left kidney, but due to nearby lymph node spots interfering with the flow. Nothing in the kidney. But a decision was only possible after a full round of ct, mri and PET scans. The latter showed the node involvement. It lights up active cells like cancer cells. All these scans are tools and I now realise none give the full picture. In the end biopsies are the only sure way to a certain dx, but not always possible, so we have to depend on our medical teams. To one side I have a friend with prostate cancer, but also with unrelated cancer in both kidneys. He recently had one kidney removed, but the cancer in the other is stable, and he is looking well and driving his car again! It is a journey, a long road, and as you are finding a steep learning curve.
What I have said is just to add to what you already know. I wish you and your mum all the best at this stage of her dx. Please keep us informed if you have time.
Hi Nicky! Thank you so much for replaying, since mums first diagnosis in 2015 I’ve been reading so much about breast cancer and never came across kidney mets, even now I’m struggling to find any articles about it, that’s why I’m so worried about possibility of kidney spot being a new cancer.... we are currently waiting for mum to have a surgery to remove brain met, which should be done next Thursday and hopefully she will be able to start treatment for all the rest shortly after. It’s all so overwhelming and sudden, so hard to believe it’s actually happening... thank you so much ladies xx
Youre right, kidney mets does seem very rare, in fact in my whole time on here since my mets were diagnosed 11 years ago I don’t think I’ve come across anyone with kidney mets from BC. Possibly they could be a primary kidney cancer or mets from another type of cancer which would be more than bad luck. Alternatively as has been said, maybe they are not mets at all. I hope your Mum gets her treatment started for her brain mets nd that any subsequent, and systemic treatment she may have afterwards sorts out any other mets that have shown up.
Thank you so much for replying, we are seeing mums oncologist on Monday so I’ll definitely ask for an ultrasound, I didn’t know there could be an option and I thought that if CT showed spot it’s than definite met on the kidney . Thank you again
I was told after a CT scan that I had kidney "spots". An ultrasound was arranged and my kidneys are fine. Might be worth asking for one.
Hi ladies, it’s my first post on this website. Just wanted to ask if any of you experienced kidney mets from breast cancer? My mum had locally advanced breast cancer in 2015, aged 52, everything was fine, she felt great and we all started getting our life back to normal, very suddenly in Feb 2019 she developed sypmtoms of a stroke, we took mum to hospital and CT scan revieled the worst - tumor in her brain... the very same day she had MRI scan which showed a spot on her lung and left kidney... as you all can imagine we are absolutely devastated, awaiting brain surgery to remove the tumor. But what I would like to ask you, has any of you dealt with kidney mets? I think it’s very rare to get bc mets in the kidney, personally I’ve never came across anyone with bc which spread to kidney, as we now have diagnosis that brain tumor indeed is bc, I’m very worried that kidney has nothing to do with breast cancer and it actually is a new primary , on top of metastatic breast cancer.
Sorry for long post, and thank you for reading.