Lynn........first of all, what do I know? As I said below I’m a beginner on cape. On the other hand I also know that we are also subject to other medical issues and chemo can mask that, in the sense that we may focus everything on the chemo. In this case cape. All I’m saying is that your hub could well be right about your symptoms being unrelated to the cancer. It has come on quite quickly, and after 6 cycles one would think your body had made adjustments to avoid sudden reactions. All I’m saying is that as usual we have to be patient and not despair! I’m hoping your scan results will come today.......Thursday?.........and you will move forward quickly. Your onc will sort this. Lower TMS must be good. You may need a break if there is new treatment for whatever this is.
I have a kidney stent because of lymph nodes near my kidney, discovered by chance, and will have an extra week break for it to be replaced on the 2nd. After only one cycle! I am sat in bed here trying to avoid passing out again! Must go and have a banana and my pills! Should I admit that I have chickened out on the big 500mg pills........too big for me who has never taken pills........and take 10 teeny 150s with my yoghurt! Please nobody laugh! At least they are easy. We must all do whatever it takes! I would only admit this pill weakness here! A sympathetic community.
all the best, lynn, and try to keep us updated. Same for ff and your hb and possible transfusion. I think of you as a real pro, ff! You are so well informed and pro active. Let us know of any developments with you. And of course dear Carolyn if you are dropping by. Hugs and love as usual. Love to all. Sorry for rambling,
Hello Mo, just read your post. i had blood pressure very low so had to be very slow at getting up from a chair etc or i keeled over, Also heart rate really beating fast. Make sure you drink loads to raise your blood pressure. i am on 4th cycle now with lowered dose to same as you now and so far so good. i was off it for six weeks because of not being able to stand-jelly legs, dehydration, inflamed gut. in hospital for 8 days,horrendous. i am drinking loads more now and eating more and it seems to really help.
My haemoglobin was 82, it had been going down for some time. It's difficult to know whether synptoms are low blood count or side effects.
Hello everyone, in particular Carolyn. Hope you are doing fine and resting up. We are all thinking of you and sending lots of hugs!
For once I’m going to ask a question and advice. I have just started my cape.........last Saturday......taking 1500mg x 2. Felt nothing for 3 days, but yesterday and today I have nearly fainted on getting up in the morning........everything black, dizzy, etc........and eyes sore. Feeling generally weird and odd. I was prepared for hands and feet, and big D ( which may be developing), but blacking out wasn’t on my list of ses. Saw gp as follow up for uti check related to a urethral stent, and she checked bp. High for me and fast pulse, but she just merrily said carry on. She thinks my body will adjust. There are people on this thread with experience so just thought I’d ask. Otherwise I sit around feeling sorry for myself! I’m a newbie to cape as you can see. I had docetaxel a year ago and didn’t feel like this, but chemos, and we, are all different.
anyway, enough about me. Hope everyone is managing. Wish spring would arrive properly........we need sunshine! Although we are supposed to keep out of the sun! I’m looking for a factor 50.
Again all my love and hugs to you, Carolyn. How are those wonderful babies? Well, not really babies any more! You must be so proud. Always thinking of you.
Bon, How low was your haemoglobin to need the transfusion? I've been very tired and mine is low. FF
I'm sorry to hear about your pain and sickness, disappointing when you have been doing OK. At last you won't have to wait long for a scan and hopefully for results. Will be thinking about you. xxx
I had a blood transfusion a few weeks ago because of low haemoglobin which made me feel a different person for a while but now I'm back to feeling wiped out though my haemoglobin hasn't dropped much. Hopefully things will improve during the break.
Hi again everyone.
I hope that things are still looking up for you Carolyn and that everyone else is as well as they can be
I was supposed to start my 7th cycle last week but I have been having really sore pains in my abdomen, chest and back. I was so disappointed when he said that for that reason he wouldn’t give me the cape until we had found out What was causing it. Even though my TMs had fallen to below 100 for the first time in a long time and I have had few SEs which are all well manageable
The pain is really quite bad at times and I feel nauseas.....today I have started being sick as well.
Has anyone else had similar——- he ordered a scan which came through for Thursday this week so not too long hopefully to wait for answers.
My husband wonders if it is gallstones and not at all cancer related??
Happy news Carolyn! Keep going, you'll show those white coats their predictions are wrong! So pleased for you (((((hugs))))
Keep paddling Carolyn this boat isn’t ready to sink just yet! 🚣🏼♂️🚣♀️🚣♀️🚣♀️ You show them girl! 💪🏻💪🏻
Ramade, Still on E & E. Will be 2 years in May! Praying for more years out of it!
I liked capecitibine when I was on it! I was on the full dose. I wouldn't mind revisiting it. Hope the lower dose helps you, so you can continue on it! Best widgets!! FF
Carolyn........things are looking up!! Improvements! And you are sounding positive and well. I’m having good feelings for you now. An unexpected turn in the road. So thanks for posting and keeping us in the loop. I collected my cape pills today. So many warnings and advice but nurse....who I already know well....... very supportive. Hope they let you go home soon........Easter chocolate bunnies in the shops now..........hubby take note! Always thinking of you,
hi ff, thanks for your reply. i carry immodium in my handbag always now and a box upstairs by the bed and one downstairs in the kitchen. i am determined not to be in hospital again with dehydration and horrible cramps.
How are you doing now?what treatment are you on?
big hugs across the pond
oh Carolyn what a relief for you, so pleased. now get those twins over and give them big hugs
Carolyn, what a roller coaster. Wish they could come up with scan results a bit faster. I hope you have some more good news soon
What good news. You are one strong cookie. Have they mentioned how your lungs are doing? You thought a lot of the symptoms you are suffering was to do with your heart tablets.
Hope everything gets sorted and you are able to go home.
Carolyn, That's crazy! Now, where is the bag of chocolate! Chocolate is a better fix than what they prescribe or maybe some eye candy! Both please! FF
Ramade, Do you take anything for the diarrhaea? I don't know if it would work for you, but the anti-nauesa drug zofran really settled my stomach one time, but constipated me. Just one pill constipated me. I've never taken them again. I wonder if it might help you. Maybe you could give it a try.
Never understand why these meds are a blessing for some and a nightmare for others! Our bodies can be so uncooperative!! Hope you can find a happy medium soon, so you can continue it. Hugs! FF
Loving your sense of humour Carolyn 😂😂 Hope mri shows positive results that can then be helped. Maybe you still have time to squeeze in a cream tea? 🍰☕️ Sending huge hogs 😘
Well waited for 2 weeks for scan results ....shows livers ok. Still in hospital having mmi scan at 2.30 looking first for heart blockage oncologist says easy treatment if it is. ..whoops one week to live and now this
When cape failed last July I was put on taxol for 12 weekly infusions. After 6 I had a CT scan which it showed it had worked. I only managed 10 as came down with neopathy in my fingers. From November last year I have been on tamoxifen which seems to be working. Yes I can understand regarding not wanting to end up on hospital again.
Have a good weekend .
Hi Linda,thanks so much for your reply, i have some Loperidime which i will take when needed, don't want another hospital stay with dehydration that's for sure. Are you on taxol now? they said that would be my last option even though i took it many years ago apparently it might work again. i have become resistant to hormone treatment now.
Carolyn, thinking about you always
Pleased you were able to get the tablets. Like you I started on 1800mg twice a day for 3 months got reduced to 1500mg twice a day I was OK whilst taking it on the week off I got the trots. I was only on it 10 months as it stopped working. Still managed to carry on with life as normal but I did not feel 100% well. I felt tired all the time. The hospital can prescribe something if it is affecting your quality of life.
Thanks Linda, i just started last night with lower dose from 3600mgs daily to 3000mgs daily. Had first dose last night then this morning, already got a churning stomach threatening diarrhoea so i decided to miss tonights dose.
just wondered if you or anyone gets this and what to do.
love to all as always
Carolyn sending you all the love in the world ❤️❤️ Words fail me right now 💔
Thanks Nicky, yes i think it was lovely Moijan. i used to pm with her.
Carolyn, hope you are comfortable now and those nurses are looking after you well
Hello Carolyn. Just wanted to send you a big hug and to let you know that....along with so many others.....my thoughts are with you
Just popping in to send Carolyn a big hug and to say you have cheered many of us up over the last 2 years - chocolate teapot you are not !!! Hope you are comfortable and feeling loved and supported .
Hi to all Cape Crusaders but mainly sending big, gentle hugs to our lovely Carolyn. I’m so sorry to hear the news you have been given and wish you strength to cope. I do hope you are getting good care either in the hospital or maybe a local hospice? Please do keep in contact if you are able. I’m sure all of us are, in spirit, standing around your bed, eating your chocolates (I’m sure there wouldn’t be any grapes!) and helping however we can. Thinking of you and your family.
To Ramade, I’m sure someone else had problems with clots to the lungs whilst on Cape but I can’t think who or when, possibly our lovely Moijan who was on this drug at some point? It is known that blood clots are more likely whilst on cancer treatment but what a shock for you. I do hope you recover quickly and can start the next cycle. Sending gentle hugs to you as well.
Good luck to all of you ladies waiting for scan results, always a worrying time. Fingers crossed for good results all round.
Dear Carolyn ( my namesake...I'm Carolyn too )
So sorry to read your news...you are very brave and I imagine you are still keeping a smile on your face.
Hope the Drs are wrong and you are with us for a long time to come. You are in my thoughts and prayers.
Lots of love GG xxxxxxxxx
Pleased you seem to be getting sorted and able to go back on cape. I was not aware it could cause lung clots. Think the oncologist should tell us it can happen. Only thing I can remember being told it was well tolarated .
Good luck for Wednesday .
Hi everyone,after a long break for side effects i am hoping to get back on 3rd cycle of Cape on Wednesday. Now i just wanted to warn everyone that if you get real shortness of breath like i did,climb 3 stairs and panicking that i couldn't get my breath- this requires serious help. i did not realise and by the time i saw onc they rushed me in for chest x ray and ct scan, result treatment for clots on both lungs which were life threatening.
hope this helps
love to all
Lyndloo, Yes kidney function improved in most areas. I only had a few,days of the changes I made. Hoping when I go back in April it will show more improvement. The levels are hanging on the edge of normal. But I passed! Now to keep up the changes. The loo and I know each other well.FF
Carolyn, so sorry to hear your news, hope you are being well looked after, sending lots of love and hugs
Yes sad as high hopes on it ...chocolate tea pots are lovely but the spout gets a bit tough !!!! It's like having a fireman with a wooden leg !!! Think about that one xxxx
Anyway night night ..sleep well ..I have antibiotics masks on ....phew they will soon fall off tonight. .
oh Carolyn, i'm so sad to read your post. Could you go on a trial perhaps? i do so hope that they manage to help you and make you comfortable at least. i hope your husband is holding up too. big hugs to you both and bless you.
Carolyn..........thanks so much for messaging us here on the threads. We all do like to know what each of us are doing. So sorry about cape, and despite everything you are sounding strong and positive. I won’t start cape until next week..........have had nothing that worked for a long time now. Maybe cape no good either! We’ll see. But like us all I will give it a go. Seeing little Anna on Sunday. Squeeze those babies of yours hard! Lots of photos with gramma! Keep in touch if you can. We love to hear from Carolyn!
all the best to everyone else, including ff, and stillhere! Keep posting.
Sending you big hugs Carolyn, I am saddened to see that you are so poorly and hope that you can spend as much time as possible with your family especially those beautiful grandchildren
Am thinking of you, love Helen x
Thank you for your reply regarding the problem with your lungs. Hope everything settles down and you are able to start the treatment again.
Sending u a hug.
So sorry to hear you are back in hospital and given such awful news. Hope something can be done for you.
Sending a cyber hug.
Hope your kidneys are OK and you are able to stop on EE. It worked for me for 3 years 8 months . Got fingers crossed it will do the same for you.
Carolyn, We love your craziness! It put a smile on our faces and we all need that! I need a chocolate teapot! FF
Stillhere, It's great to hear from you. I'm doing OK. Waiting to here if my kidneys are functianing OK. Other than that hanging in there. I'm still on E & E. It will be 2 years on it soon. That's wonderful the trial is still working. What drug is the trial for? The longest I got out of a chemo was 5 years out of vinorelbine. Good luck. FF
Hello still here. .how nice to hear from you. Cape didn't do anything at all and lM in hospital .liver very swollen. .lungs got fluid but can't drain it ..they say I only have a few weeks . .I accept this as I have not quality of life anymore
So thank you ladies for putting up with me and my useful banter zxxx
Hi Carolyn and FF, it's lovely to see you both still on the forum! Feel a real oldie these days! Carolyn, I'm sorry to hear Cape is no longer working but I hope that there is another option and that you are getting good care in the meantime. Living in pj's sounds good and I hope you are still having a daily chocolate fix?
Hope all still well with you FF? Is your wildlife menagerie still with you? I have a very tame pheasant now.
I don't come on the forum much because I'm still stable on my trial after almost 3 years, I don't know how it's happened but I'm blessed and very grateful. I think I'll be off before long, taxane chemo next probably. Take care everyone xx
Carolyn, It's good to hear from you! Hoping you are cozy with good care, yummy food and comfy PJ's. Wish I could deliver Kentucky fried chicken and chocolate. FF
So very sorry to hear that Cape not working for you and hope the doctors have other things in their kit bag that will work some magic. You do so deserve it . I love reading your posts.. you are always so positive . helpful ,wise (and funny!). Please let us know .
Big gentle hugs from another non sleeper
I was just hoping cape would be my magic pills but oh no ..it's fallen out with me ... never mind will keep in touch as much as possible. ..xxxxx🐕🐕🐕🐕
thanks lyndy, i'm glad you're doing well at the moment. yes it was the cape, i'm so low at the moment that i'm not sure i want to go back on it but there's only trials left i think. maybe i could manage a really low dose. C arolyn i know your dose was dropped i do hope you are starting to pick up now.