Thanks for that info, Carolyn - I didn't know that!
Moijan, I think they do that at our hospital, too, but not sure if it is the actual morning of my appointment - that would be much more useful.
Yes, Sandra, That would have p d me off too...I obviously hadnt realised. Actually, my primary got missed, so now attend elsewhere and i currently get copies of drs letters, but im very happy with my onc..the oncs all have group discussions with the radiols /other specialists on the morning of my appointment....I guess thats what might happen everywhere.. They are closely watching an area for me, which will be reveiwed with a bunch of scans in a few weeks.
Have noted some muddly bits in gp letters written by junior doctors in the oncs absence tho
very best wishes,
Hello Sandra, so sorry to read of your progression - worrying, isn't it? However, I'm glad to hear at least someone seems to be on top of things for you. Well done on completing your 6th cycle. I hope the Vinorelbine/Cape combo works for you.
I hope you have a lovely week away for your birthday. It's my 60th this year, too - it seems quite a lot of us on the boards are hitting that milestone this year!
Hugs and best wishes. Barton.x
Well done, marli! Tiredness is an issue I'm afraid - I think it's the stress that the chemo puts on your body - it is designed to kill cells, although hopefully the cancer cells go first! However, it does kill ordinary cells as well, so the body has to work hard to replace the necessary ones!
Sorry you are also experiencing nausea. Luckily, I haven't had that as an se, but I can see how debilitating it could be.
Hugs, and enjoy your week off! Barton.x
Hi Sandra and a very Happy 60th Birthday today 🎂🎈🎉🎁😊🍾 Shoukd we now call you Sandra60? 😉
Have you anything nice planned? If not it sounds like your short break is just what you need to take your mind off everything. It dies me and my OH wonders when we get away as when you are in dufferent surroundings you do manage to forget about the dreaded SBC! Enjoy.
As to your onc, he is a bit of a liability isn't he? Thank goodness the radiologist did interpret the results - as they should do. Chemo does help with aches and pains with your bones as I've found over the years so it could be worth giving Cape a few more cycles on its own before your onc adds another chemo? Just a thought. And if you really aren't happy with him you can get a second opinion to check you're on the right course of treatment but still get care/treatment at your local hospital, you don't necessarily have to change unless you go onto something involving a trial which tend to be done at the larger cancer centres.
Anyway, get on and enjoy yourself on your special day.
I would, but this is not the first time. I had a bone scan prior to starting cape in January, my Onc told me it was clear and the considerable pain I was in was nothing to do with cancer. I saw the Macmillan Nurse 6 weeks later who looked through all my reports and told me that the radiologist strongly felt that there was metastasis in my hip and ribs. When I next saw my Onc I asked him about it and he was very vague and wouldn't comment.
I hope everyone else is getting on well with cape and managing to enjoy life, I am looking forward to a week away next week and a change of scenery.
Hugs to you all
i think cons Radiologists are the most expert at reading the scan....wonder if hed been away, or maybe behind in his checking of scans, my own onc said last week that the rads cons had picked up on Some progression when mine was reviewed on the morning before my appointment....
So, give your onc the benefit of the doubtxx
hoping all. Is going as well as, Moijanxx
Just finished my 6th cycle of cape and the only side effect I have had had been the complete lack of energy to do anything, I didn't even bother to take my anti sickness tablets during the last cycle as the nurse told me I didn't have to. I had my CT scan after the 4th cycle and results after the 5th, my Onc was happy with the results and told me to carry on with cape as the lymph nodes in my chest have shrunk, as there were no problems, my next appointment was with the oncoligy Nurse last Monday. Everything was fine on Monday and I picked up my next lot of cape. When I got home there was a message on the answer phone from the Onc's secretary saying that he needed to see me before my next appointment. So it was back to the hospital today, 25 miles away, and a wait of 1.5 hrs to be told that the radiologist has reviewed my scan and decided that there is progression of the cancer in my ribs and pelvis, my Onc had previously written to my GP saying that he didn't know why I was in pain with my ribs and the pain in my hip had been put down to arthritis, the pain in both areas has decreased since I have been on chemo. They are going to add vinorelbine to the cape along with bone juice but I am not starting it for 10 days as we are going away for a few days to celebrate my 60th birthday tomorrow, at least I have got an extra week off cape while we are away! I didn't have much confidence in my Oncologist before, I have even less now, but at least someone else reviewed my scan and picked up on the deterioration.
Good morning ladies, a lovely sunny morning here today. Hope everyone is doing well today.
Finished my first 2 weeks of tablets this morning. Things seem to have been OK without any major se's.
The major problem has been fatigue with a little nausea. For the first 11 days I was so tired I could not be bothered to answer message and texts or even to talk to my husband at times. The most activity I did was 20 minutes shopping and then have 2 hours sleep. Looking back over the last 2 weeks I realise that I was feeling somewhat depressed , which really is not me.
However, reading back on this thread I did find it reassuring that this seems to be normal.
Well let's see what my week off brings. Thank you for your support. Marli x
Hi racer and good to hear from you. I'm glad you got away for a couple of days but sounds like it was a bit too much for you overall, I hope you have managed to rest since and feel a bit better.
Helen - great news and good for you planning a few holidays. We have always done that once settled into a new treatment regime so we're hoping to plan something soon after a few months uncertainty about which treatment to move on to.
Hello racer, in answer to a couple of your questions: Yes, my hair has definitely thinned. I think this is mostly due to the Cape, but it was a little thinner before, possibly due to the hormone therapies. Also, no, no sweet cravings, but I tend to crave savoury stuff! I am actually, off (to some extent anyway) chocolate! I know - weird!
That is wonderful news, Helen! Thank you so much for sharing and cheering us all up!
Wow, you have got a busy time ahead, but the best kind of busy - HOLIDAYS!!! I hope you enjoy every second of them - you deserve it.
Hugs and best wishes - long may Stable Mable reign.
Hi cape Crusaders... dropping in to share some happly news..just done cycle 8 on cape and scan results show no progression :-))) Very pleased.
I have felt very fatigued the last 2 cycles so my onc and I have agreed to move to 2 weeks on 2 weeks off. Not had a dose reduction.
Planning many trips over the net few months.. Spain for May half term with the kids, weekend in Cambridge at a humanist conference, Stonehenge Summer Solstice festival, Camp Bestival with the kids and most excitingly 2 weeks with hubby touring Europe in his camper van in July. I love this chemo, apart from my poorly feet!
Hugs to all xxxxxxxx
Hello racer, thanks for retirement info - yes, really looking forward to it, but still feel a bit like I'm on holiday at the moment!
I am sorry you had so many problems on your short break away. I hope you managed to have a good time some of the time. Bourton on the Water is lovely, although it is many years since I have been.
Good luck on Thursday with your next Onc appointment. Please let us know how you get on. Glad you feel good about the Cape.
lovely to hear from you, but so sorry about the surgeon...must have been traumatic to discover this
recently.....we put our trust in people and then get let down...
hopefully you werent diddled, but do check and see if you are eligible for compensation....
As the other ladies have said, he seems to be doing all the right things but I do know that some people seem to suffer more than others. I was prescribed pyridoxine when my feet and hands became a bit sore, its Vit B6 and supposedly helps. I can't say for sure that it did but I didn't have any real problems with either and only took the tablets when it was bad. You/your hubby should be able to get them from your GP or onc and its a high dose tablet taken about 3 times a day if I remember correctly. Good luck.
To all Cape crusaders - how flippin' cold has it been this Bank Holiday? Brrrrrr. Very chilly today so not doing too much but did go out for the day yesterday to Kew Gardens - beautiful azaleas, rhododendrons and blubells - very uplifting.
Hope you have all been able to enjoy yourselves one way or the other.
Thanks, George. Just more crafting as I need to finish that project. Looking forward to it. Hope you have a good one, too.
What an apt quote, George!
Caffy, hello and welcome again. So sorry about hubbys feet - I know exactly how painful that is! However, he seems to be doing everything right, so not sure what to suggest. I know the Vaseline worked wonders when my feet were bad, but you do have to put your feet up as much as possible a. Because walking whilst squelching and slipping in Vaseline is just horrible (and dangerous!), and, b. Because putting stress on the feet makes things worse. I believe it is because the chemo leaks out of all the tiny capilliaries when pressure is put on them, also when put in hot water. Actually, he could try bathing his feet in chilled water then patting them dry and then creaming them gently. Hope things improve for him soon. Wishing you both all the best.
Marli, love that idea! Just what he deserves! Why are all these dreadful things always perpetrated against women?
Hello again lovely ladies. I 'chatted' to you in here last year when my husband started taking Cape for his Bowel cancer mets. I'm a BC survivor, hence being in this forum! I hope you don't mind me gatecrashing again! My poor hubby is really suffering with his feet, he says it feels like walking on hot coals. He's just had an extra week off but should start again today and is not keen. He uses Aveeno cream and Vaseline, and a heel balm. Any other tips on what he can do? I try and be patient but he is pretty fed up and therefore grumpy about it!!! Wishing you all a lovely bank holiday, hope the weathers better than here in Cornwall! Xxxx
Gosh George - that is pretty heavy stuff to deal with. Hope all is well with you. I did wonder if any of the many ladies on here had been affected. Such an evil man- my friend has suggested that he castrated and have them sewn on again, then removed and so on and so on. Marli x
Thank you for that information George, it all helps to reassure me.
It is 3 months since I was told about my mets and that has really stressed me out. In the eight years since my first dx have never been stressed, just been able to accept everything that has been thrown at me but due to all sorts of complications this has been very upsetting and scary couldn't wait to get the chemo going.
Managed to get baking done then have had a good sleep.
Next job is to prep evening meal and try to do a little ironing. Marli x
Oh George - that's awful - I have been reading about his bizarre behaviour and experiments! A real crook. How he was allowed to get away with it for so long is totally beyond me.
I have had a lovely day crafting today - first time for absolutely ages. Hope everyone else has had a good day.
Hugs to all. Barton.x
Thank you Nicky that is very reassuring. You are right about an infusion being more predictable. With the cape it is being drip fed over a period of time. I have had chemo twice before - 2009 ans 2014 and expected a few days of feeling unwell, although I never had sickness.
I have had 3 days of feeling rubbish. Today am only a little better but have made soup and intend to bake rock buns. Will also cook Sunday lunch so if I achieve that will be pleased with myself.
Hope everyone is feeling well. Marli x.
One thing I did forget to mention in my post regarding what to expect from Cape was that it took me, well, my body a few cycles to adjust to the tablets. I think we forget that it is chemo, just because we dispense it ourselves doesn't mean it goes unnoticed by our bodies. To be honest in those first couple (3?) cycles I did think that IV chemo would be far better as the rough days all come together soon after the infusion and you get to know the pattern of SEs so can lead your life around them. I think once my body adjusted, and I had a dose reduction, it did get a lot better so don't believe that it will be like this all the time. Your body has suddenly started having chemo so it's no wonder it's complaining a bit! Hope that the fatigue and nausea subside, if the anti emetics don't give much relief try a different type next time, sometimes you have to find the one right for you.
Hi racer, sounds like the onc you saw is more on your case than the previous one. Hope you have managed to get out a bit over the weekend, even if the weather has been trying to stop us! Look after yourself.
Hi to all other Cape crusaders - Hooe it's all going well with you and you're getting good results from the peachy pills.
You're no wuss, marli! Don't ever think that. Any chemo has side effects - just because you are suffering after 3 days does not mean you are a wuss - it just means that it affects you differently to other people.
I can't really help, except to say rest as much as possible and keep taking the meds (hopefully your hospital issued you with antiemetics?).
Wishing you all the best. Hugs. Barton.x
Thank you George for your reply. Good to hear that you are enjoying your break.
No major problem at the moment after 3 days except for fatigue and a feeling of nausea. . Is this fairly normal so early in treatment? Makes me sound a bit of a wuss. Marli x
Hello George, so glad to hear you are OK, and thoroughly enjoying your Cape break! Well deserved. I do hope you have a wonderful time in Valencia! You lucky thing (am very slightly jealous!). Have a lovely long weekend.
I'm OK, thanks, George. I bit the bullet, and resigned from work on 12th April. I had planned to resign on Tuesday 18th, but had forgotten I would be off that week. I took my resignation letter in with me on the Wednesday, but had a bit of a meltdown at work in the morning - mainly due to sheer exhaustion (one of my se's causing worry and hence loss of sleep, etc) (an se from my mets, not from Cape, I hasten to add), and was offered immediate termination of employment without having to work my notice. My resignation letter had stated that I was resigning for health reasons. So you are now speaking to a lady of leisure! I have to say, I couldn't have done it without PIP, and a fairly good pension from a previous employment. I realise how lucky I am.
Weekend plan is for some crafting, as it's a friends 50th birthday next Sunday.
Hugs and best wishes. Barton.x
Wondering where George is lately. I hope you are OK, George? Please let us know how you are getting on. Hope everything is well with you, but worrying slightly as you have been so quiet!
Hugs, and best wishes, Barton.x
Hello racer, lovely to hwar from you again! Thanks for keeping us updated. I'm so glad you stuck to your guns (you go, girl!), and insisted on continuing with treatment. It is obviously having some effect, and, as Moijan says, this Onc is much more sympathetic to your wishes. Perhaps you could do as Moijan suggests, and try the two weeks on and one off next time - go with what you feel comfortable with, though.
Good luck, and keep in touch.
Hi Racer, very well done....what a star!
sounds as it this onc is a little more creative...yes when things improve try the two weeks on, one off, if its on the table....the sickness could be the cape...I used to get that, so antiemetic might be a good thing to try.
so pleased you are still positive....keep plodding on....its what we all do reallyxx
i had an mri yesterday..so am awaiting results...oh and another blasted wee infection too! But generally am just like you....feeling my way forward, listening to my body and travelling hopefully. Xx
Thanks for updating us, marli. Sounds like you had a fairly successful meeting with your Onc - I like the way she thinks (mine started me on a high dose - 4000mg a day - for about 8-10 cycles, and then had to reduce it because I had severe breathlessness, to 3600mg per day).
I never suffered from nausea with any of my chemos, either, but I did (and do) get the big D, as George calls it!
Keep in touch.
Thank you Barton and Nicky for your replies, much appreciated.
After seeing the onc. I was a little happier although the CT did show a little change which could be explained apparently so need to see what the first one after first round is finished.
Someone some time ago mentioned that higher dose tablets were quite big so I had been worried that the tablets would be difficult to swallow them. Thankfully they are just the size of paracetamol and are no problem. She said she has started me on a lower dose of 1650 for the first round and then will probably raise it for the second. This seems to be the opposite to what appears to be the norm.
Nicky- your comments about being sick were comforting - I was never sick during my first 2 lots of chemo in 2009 and 2015. My horror is diarrhoea. I suffered for 15 months, and it was hell.
Keep you fingers crossed for me please. Marli x
Thanks, Nicky! You gave a much more comprehensive reply than I did - so much more useful information.
I hope you manage well, marli. As Nicky said, you can always ask for a dose reduction, or a break, if you are suffering from the se's. I have had both over the (nearly) 3 years that I have been on Cape.
Please ask anything you like - we will do our best to answer your questions, but if we don't know the answer we will always refer you to your medical team for the answers.
Hugs and best wishes. Barton.x
Sorry you have had to join the secondary part of the forum but I see you have already had a warm welcome from Barton. We are a friendly bunch and most often join in a relevant treatment thread or dip in and out of the Bone Mets please join in thread - even if we don't have bone mets or have other mets alongside bone mets. Feel free to join in on any thread.
I have bone mets which were diagnosed in 2008 and then liver mets came along in 2013 to join the party! I started then on Capecitabine and it worked well for me for about 18 months, shrinking my liver mets and stabilising my bone mets. I have an awkward BC that likes to change receptor status so after Capecitabine I went onto a Herceptin based treatment as I was now HER2+ having been HER2- for 10 years! But that's too long a story to bore you with.
I had a real problem with the thought of nausea when I started Cape as I had awful nausea with FEC in 2008. I started taking anti sickness meds but quite soon realised they were the reason I felt so spaced out and stopped taking them, I didn't suffer with nausea at all after that whilst on Cape. Btw they were metaclopromide, which is the one often given and can have adverse SEs for some people - just giving you the heads up. I also had a 20% dose reduction around the same time (cycle 1) but this didn't reduce the effectiveness of the treatment, just the SEs. I did have some diarrhoea after the last tablet of the cycle but nothing to cure any real problems, just one day or night of it so didn't need to take any meds. I did get sore feet but, again, nothing that caused me real issues, I just needed to moisturise well and used a cracked heel balm on my feet which has the active ingredient of urea at 25% rather than the 10% which some moisturising creams have. Boots own was fine and is the same as branded ones. I did get small splits in the side of my fingers at times but used to put on healing plasters, again own brands from various places work well.
Also if SEs get too bad you can ask for an extra week off, this is fairly common, as our bodies sometimes need an extra break to recover especially if SEs are getting bad, and it allows skin to heal. I also travelled abroad whilst on Cape (lots of times!) so don't feel you have to stay rooted to the spot, some oncs don't like the idea of travel whilst on chemo but for goodness sake, we need to enjoy ourselves! Usually your blood counts don't take anywhere near the pounding that other, IV, chemo's give so you are unlikely to have low blood counts which is the usual reason not to travel in case of infection.
Hope that helps. There is loads on info on this thread but it is a looooooong thread to read all of the advice, I've just written down my experience of a very doable and effective chemo.
Good luck with everything.