Good luck today Racer xxx
my this thread is getting hard to find now....!
Well done, George! A woman after my own heart! An excellent excuse for new clothes.
Hugs. Barton.x
Just a very short message for racer, George and anyone else facing scans, results, etc. Good luck to all of you! Glad your scans are over, George, but sorry about the coffee spill! Racer, good luck with the next lot of pills!
Hugs to all. Barton.x
Oh and im in the 'Ratty club' too..I find the third week( week off my chemo) is worse...anything that my oh does which normally might irritate...well it really bugs me...poor chap. Im also more sensitive about things and more likely to just' come out with it'
anyway, I do hope you manage to get some adjustmentxx
Moijanxx
Yes, Bousy, was very pleased to see you, wondered how you were!
Barton has said it all really, ...cant add much..you might be better on a reduced dose..and or alternate weeks. Cape seems to work very well for people...Have some hope it does the trick for you...I do hope the pain is less and may even go away...horrid stuff pain....its bad enough being ill without that too! Xx
i had heard that rads do help with pain from bone mets.....maybe the benefits will increase with time.xx
hugs, Moijanxx
Hello Bousy, that is the dose I was started on. I think I did about 7 cycles (I think) at that dose, then was reduced to 1800mg twice a day. It helped a lot. It is worth asking your Onc if you could have a slightly reduced dose.
Sorry you have no appetite, and are feeling ratty. I hope you get good news when you get your Tm results on the 9th.
Hugs. Barton.x
Hello Moijan, I could see your original post, but as you say, it now seems to have diappeared and I can only see your attached copy! Weird! I don't think trousers can be a banned word - perhaps they meant to delete,mine where I said sh*T, but they usually just edit!
Hugs. Barton.x
Hi everyone,
I know how you feel. I'm on my fifth cycle of cape and haven't felt too good all the way through it. I'm on the max dose of 2000mg twice a day. I was fine on first 4 cycles. As I have secondary in my spine, I've had a lot of pain. After radio before Christmas, this has eased so onc said to try and wean myself off morphine tablets. I've cut out morning one and now the evening one. Trying ibuprofen again. I had a CT scan last week and TM blood test. Get results on 9th to see if it's working. Last time TM was so high they wouldn't tell me results. I'm just worried it won't work. Also have had no appetite and I get ratty. Lost quite a bit of weight.
Hi Barton, im getting a little paranoid! The post below...I posted it and then edited it, checked and saw it wasnt anywhere on the thread! Fortunately, I was able to 'go back' on my ipad and found the copy...but thats really weird...do you think maybe we arent allowed to say words like 'trousers' on the forum?
Oh, its gone again...well ill jolly well paste it here----!! On this post....have we a ghost?
.............................................................
Yes Angela, Barton is right....I spoke to someone i hadnt seen for years and when I told her, she said 'well, youre still here arent you? ' as if that made everything better...!
Yes, people can be a right pain in the 'trousers' frankly.
re. Your cape dose, forgive me if Barton has already mentioned this...,
it sounds exactly the very high dose I was put on initially...they made me fill out a journal and after id had diarrhoea whilst in the library, and a session of uncontrollable vomiting.....I wrote 'life isnt worth living'!
And The onc hurried to reduce the dose AND made it one week on and one weekoff...It was so much better after that and worked well for two years..!
the other thing is, Cape was wonderful, because it was a tablet...all under my own controll and what I didnt realise at the time was that there are very few tablet chemos. that are taken by mouth...I was free to travel and do lots of stuff I cant do at present......so hopefully your onc will be able to sort a suitable dose...they always start with the largest dose to see if you can tolerate it....
lovely Barton and I have had DVTs so its really important to. Drink gallons if you can and be as mobile as you are able.
that said...they tell me excercise makes us feel better..and it does...now im having to inject myself every day with blood thinners...ive got a bit lazy again!
i really wish you well on Cape, I miss it madly xxx
Moijan💜💙💚
Yes Angela, Barton is right....I spoke to someone i hadnt seen for years and when I told her, she said 'well, youre still here arent you? ' as if that made everything better...!
Yes, people can be a right pain in the 'trousers' frankly.
re. Your cape dose, forgive me if Barton has already mentioned this...,
it sounds exactly the very high dose I was put on initially...they made me fill out a journal and after id had diarrhoea whilst in the library, and a session of uncontrollable vomiting.....I wrote 'life isnt worth living'!
And The onc hurried to reduce the dose AND made it one week on and one weekoff...It was so much better after that and worked well for two years..!
the other thing is, Cape was wonderful, because it was a tablet...all under my own controll and what I didnt realise at the time was that there are very few tablet chemos. that are taken by mouth...I was free to travel and do lots of stuff I cant do at present......so hopefully your onc will be able to sort a suitable dose...they always start with the largest dose to see if you can tolerate it....
lovely Barton and I have had DVTs so its really important to. Drink gallons if you can and be as mobile as you are able.
that said...they tell me excercise makes us feel better..and it does...now im having to inject myself every day with blood thinners...ive got a bit lazy again!
i really wish you well on Cape, I miss it madly xxx
Moijan💜💙💚
I know, Angela - I have a very good friend at work who has helped me immensely at times, but even she says very tactless things sometimes (one of the worst was when I first knew I had to have chemo. I said I was distressed about losing my hair and she said "I don't know why, you never did much with it anyway"!). She has witnessed all my previous treatments and how upset I get, and she still has no idea how absolutely soul destroying it is sometimes. I find one of the worst things is when people ask how I am, and I have to say I'm fine (even though I feel like sh*T) otherwise I end up crying!
Try to be kind to yourself.
Hugs. Barton.x
Hello Angela, sorry you are feeling so tired and angry. I told racer the other day (who said she was being moody and also wondered if it was the Cape) that I hadn't been moody, and wasn't sure if it was the Cape or "just" stress. However, I was just thinking on the way home from work today, that racer said she was on steroids (I think). I know they can affect your mood. Are you also on steroids?
The other reason could be that you are still trying to accept your new situation (I have had 2.5 years now to get somewhat used to the idea)- it is incredibly stressful, and no-one should punish you for feeling moody/angry/distressed/worried/sad, etc, etc, etc (you get my drift I expect). I am lucky, all my friends and relatives who know about my Secondaries have been as understanding as someone can be who hasn't been in the same situation, but I think, although it would upset me too, it is their problem, not yours. Keep telling yourself that, and hopefully you will gradually accept that you are not in the wrong, and have a perfectly good "excuse" for being angry.
Sorry to ramble, and I hope I have made sense!
Hugs and best wishes, and to all Cape Crusaders. Barton.x
Hi Angela
Unfortunately you will meet many people who are so insensitive and say all the wrong things. I find even friends who have recovered from treatment for a primary BC still unwittingly say things that I thought they, at least, would understand and therefore not say them!
If you do wnt to repair the bridges with your relative maybe do it when you feel able to do so and possibly by email? I gave up telling friends and relatives over and over again the same details so I tend to communicate anything to do with my treatment or current state of health via email and keep the actual conversations for more normal things. You could tell them exactly how you felt at the time, that way they may get some understanding about how tired you are and although you probably look OK that you are not feeling OK. Only if you feel up to it. Also after I started on Cape in 2013 my OH and I decided to take lots of short mini breaks in Europe, places I was comfrtable with their health care system and knowing I could get back from relatively easily. It's also easier to get travel insurance for Europe than further afield. Whwn I was first diagnosed I told my husband that I felt too much pressure in planning things too far ahead and for too long so we started with the one night away in the UK and progressed to trips further afield as and when I felt better. I found out by accident that if you book any flights on BA using part or full airmiles you can cancel them with only a small administration fee to pay. This has helped us plan ahead but we both understand we may have to cancel nearer the time but then have a backup plan of something else in the UK. I have only been able to do this due to my spending at a certain supermarket who give you vouchers which you can exchange for airmiles! Also we always book a hotel either in the UK or abroad that is last minute cancellation - again, the pressure is taken off. It may cost a few pounds more than the non cancellable rate but I'd rather that than fret about it or lose lots of money if we had to cancel. I have also taken my holidays in the 3 month gap between scans as, when they are stable, there is no reason not to. Obviously its early days for you but hopefully you can gradually adjust to the dose of Cape (or get it reduced if you are struggling) and feel more like getting away from it all. It has helped both me and my husband escape reality many times as there are no real reminders about hospitals, blood tests, oncology appointments if you are away from home.
Nicky x
RE down days...
Hi Angela and Racer,
yes George is right and her advice contains lots of good suggestions.xx
when I read these kinds of thoughts on a thread, it makes me reflect upon wether we go through a kind of bereavement process, when we travel the cancer journey? If we have ever lost someone, we tend to find things we 'should' have done, or should' have said as if we need to beat ourselves up...it seems the same with bc!
My own example was having been sent away from the breast unit treated/feeling like id been a hypochondriac...I left it a year until I found a large tumour..before even checking my breast. It is really strange how that became 'my fault' well, that was 17 years ago and im hyper alert now,but always wondered..what if id asked for a needle biopsy?
Really, we, none of us are able to control everything and also, we are all doing the very best we can...so It is a bit unfair to beat ourselves up. What we have to try to do, is stand back and see he process for what it is....and as George says, collect good experiences, maybe even note down positive thoughts, like
'well done me, for asking that question' or ' I handled that chemo session well'
it is a tough journey, the one in our heads xx
hugs, Moijanx
Hi racer
I am on a break from Cape at the moment as waiting to see if I can have an op. I was started on quite a high dose which was reduced after 6 cycles. I did feel tired at first but side effects did settle and, when on lower dose, I got on very well with Cape. However, considering what we are going through,we are entitled to feel moody at times and, although I like to keep busy, I am a great believer in the odd duvet day (with 3 children, this might not be an option!)
Things that have helped me were, on a practical level, moisturisers- I tried them all- Udderley, Aveena, Vaseline, Flexitol, etc and Loperamide for the dodgy tummy. Also, I had counselling, took advantage of free complementary therapies and used a Headspace app to calm the old nerves/worries. Penny Bhrohn ( not sure of spelling,) also run some non residential and residential courses which are good.
It is great that the days are getting longer and brighter. January is not the most cheerful of months.
Hope all goes well for you. Sure you will feel better once you are further in to your new regime; it is such an anxious time when we change treatments, waiting for results, etc. Keep us posted.
Have a good week all Cape Crusaders 😊
George X
Hello racer, I'm glad you are feeling more comfortable. Yes, Cape makes me hungry too! Not so much thirsty as I have to drink lots anyway for another problem, but it is a very drying chemo - hence the sore hands and feet. I haven't noticed being moody, though! Could that just be all the severe stress you are under at the moment?
Glad you are not needing anymore transfusions - they take so long, don't they? The one time I had to have blood, though, I felt so much better a couple of days afterwards. I hadn't realised quite how exhausted I was all the time until I felt better.
I hope the week on, week off regime works for you and that you continue to improve.
Hugs. Barton.x
Hi there everyone....had to search for this thread! Hope everyone is doing well?
Moijanxx
Hi george
Ive done a quick update on the Kadcyla thread. Basically I've had a liver biopsy just to confirm receptor status and am currently on Kadcyla. A scan after a couple more cycles should show if it's working or not - fingers crossed it is! In the meantime I have had a second opinion at The Marsden this week to find out what else is available as and when Kadcyla fails me - always one step ahead is my motto!
Thanks for asking
Nicky x
Hello George, that is great news. As Nicky says - you have a plan! I hope everything works out as scheduled. I hope the scans go ok next week (breathe in, and hold your breath - I get flashbacks when they do CT scans on "24 Hours in A&E" on Ch.4!).
Yes, everything OK with me at the moment, thanks. TM's were down to 50 at my last blood test, even after the 8(?) week break I just had. So very pleased.
Let us know how it all goes.
Hugs. Barton.x
Hi george
Ive also been wondering how things are going with you. It sounds like you have a solid plan in place and fingers crossed the surgery goes ahead soon. Great news about the TMs, it is a good indicator for many ladies, especially if they have been done from the beginning. Keep us up to date with the op details, we can bring cyber grapes when you are recovering!
Nicky x
Hello George, glad you posted as I was beginning to wonder if you were OK! Wonderful news re your TM's! So your op is going ahead soon then? Please let us know when it is and how you get on. I think you are probably on a rest from the Cape at the moment to prepare for the op. I hope your hands and feet are feeling the benefit of the rest.
Best wishes.
Hugs to all Cape Crusaders. Barton.x
Hello Angela, try and rest as much as possible - not always easy, I know. My sense of taste doesn't suffer too much - not nearly as much as when I did FEC-T in 2011. Only two things tasted normal then - milk and pineapple! So I know what you mean. I haven't lost my hair on Cape, but it has thinned a little.
Hugs. Barton.x