Hi Moijan, well after taking them for four days my platelet levels went from 0.94 to 127. So pretty impressive! My white blood count went from 2.4 to 3.8, Lymphocytes from 0.87 to 2.18 etc. So all white blood cells improving. Having another blood test on Monday 6 March as onc has given me a 10 day break from Cape.
Hi there Racer
So sorry you are going through it xx
Rest assured the physicians will know what to do....., bloods are very crucial in their decision making. I keep reminding myself, ( myself,!) that oncs are very specialised physicians, not just cancer specialists...... I go to mine with all sorts of queries ( you'd be surprised) and as you know the treatment for pneumonia is often the same as for a chest infection xxx
Try to keep your spirits up as high as your sense of humour! Which is refreshing.........
I have said before, the word palliative feels scary, but these ladies are pretty good with pain control ( perhaps I'll ask one about my knees!) and if we are not in pain, we are better able to focus upon being strong against all the stuff we have to deal with XX
Much love and hugs.... keep in touch xx
Hello Helen, I'm not a breakfast person, and generally hate eating first thing in the morning, so I tend to keep it minimal. I change between a yoghurt, or a choc chip muffin, and have tried digestive biscuits (about 3), Cheddars, Jacobs Cream Crackers - anything really. It's a chore for me to find something to eat to take the pills with. Oh, one I quite like is the Rachael's cream rice puddings from Sainsburys. I get the impression there isn't really a minimum - I think it just needs something to get your stomach working so they just don't sit there.
Hope that helps.
Well someone says that they were advised that a sandwich is fine. I should think that a bowl of cereal or a couple of pieces of toast is enough. That's the kind of thing that I eat and have been ok.
What does everyone eat for breakfast?!
We know we have to take the cape within 30 mins of eating but I really struggle with wanting anything to eat in the mornings. Has anyone every been advised on what is enough?
A piece of toast? A bowl of Alpen? A piece of fruit?
Does that do the job do you think? Just one of those I mean, not all 3!
It's not my normal oncology team who have given me the additional advice but a private service which was paid for me by a charity. I'll let you know how I get on and pass on any advice, even though it is addressed at my personal needs. My regular oncologist wanted to know the name of the mushrooms so if I can spread the work within the NHS that's got to be a good thing.
Oh racer, you poor thing! You are having a tough time. In a way I'm glad you are still in hospital, because they are obviously looking after you well. I hope you feel better soon. As Moijan says, I expect ypur Onc is staying away to give you a chance to get over the pneumonia - it wouldn't be fair to load you down with too much right now.
George - I hope your pre-op goes OK today. And, I'm sure you will, but I hope you have a wonderful time in Portugal and come home well rested.
Hugs to all. Barton.x
Hello Racer, you are having a tough time xx
Are they giving you physio? Do drink buckets of water.....to flush out the bugs and the antibiotics can dehydrate us xx
sorry you are getting rib pain...yes the nerves around there serve several systems so maybe it is the pneumonia.......And id agree with you...the onc likely thinks ' lets deal with the pneumonia first' as that can floor you, as you are finding out xx
keep us posted...we are here xx
Glad things seem to be settling for you, but it certainly sounds like you have had a challenging week. You are right to want to remain in hospital, not somewhere any of us want to be, but at least you know you are being well looked after. Perhaps the delay in seeing your onc is for the best. I can only cope with one thing at a time and, at least when you see him, you should be feeling better and ready for the next treatment (it never ends, does it?) Anyway, hope you get a good night's sleep tonight and at least you have escaped storm Doris (not much consolation, I know)
Welcome Babsy, good to hear that your team are looking after you and successfully trying new treatments which have sorted your bloods. I was on Cape for 6 months and am having a little break now
Barton, I have been on 3 hormone treatments: Tamoxifen, Arimidex and Exemestene. Think onc going to put me back on Tamoxifen as the other two seemed to stop working for me. Lots of trial and error as you know.
Right, I am signing off for a few days as me and hubby are taking a mini break to Portugal: Saturday until Thursday. I have a few days grace then it will be my op, depending on availability of HDU bed (I wish I hadn't watched Hospital on BBC2 as I have convinced myself they won't have a bed for me ) Oh well, going for pre-op tomorrow. The fun just doesn't stop.
Hope storm Doris has clamed down in your areas. Have a good weekend all 🙂
Hello Babsy glad you are more or less ok on Cape, apart from your blood count, but glad that has improved for you. I'm glad your medical team is looking after you so well - they seem to be on the ball. Let us know how you get on, won't you?
Hi everyone, I usually post on bone mets forum but have just finished round 4 of Cape. Was extremely tired during round 1 but had an easy ride on cycles 2/3, but cycle 4 wiped me of my feet. As my bone marrow is compromised I have the added problem with blood counts. Cape is working, alongside other stuff and my lymph nodes are back to normal so I'm pleased with that. I was fortunate to have a consultation with an integrative oncology service who when looking at my medical notes made some more suggestions of what to run alongside Cape. One of the things I've taken is a medicinal mushroom extract from Agaricus Blazei. Within four days my platelets went from 0.94 to 127. Apparently they've had great success in Spanish hospitals with it having brilliant and quick results with blood platelet levels. I was told to take 2 a days.
Hello George, yes, I have had hormone treatment in the past. I was on Anastrazole after my original IV chemo and rads, and stayed on that until the Secondaries were diagnosed. Then was on Cape. It worked so well after 10 cycles, that they took me off that and I was on Exemestane for a few months, before bone mets diagnosed. I have been told that I am only very weakly hormone receptive now, so not quite sure where that leaves me.
Have you had hormone therapy?
Oh Dear Helen and Barton,
this alcohol risk seems to come up every so often....like everyone else, I enjoy a drink, especially when Im out in company.
however, we should remnd ourselves of the risks.....sad tho it is, alcohol is a risk factor for bc...and Breast Cancer Care have put out bulletins such as this one..
My own understanding s that alcohol is full of sugar, which bc cells love to bits. That alcohol can make tamoxifen ineffective and can increase oestrogen levels.......
i will still have the odd drink...but we cant hide our heads in the sand!
My my onc is also reluctant to give too many scans so understandable he is waiting until after your third cycle of Cape. Enjoy your remaining free week I am sure your bloods will benefit from the break. Can you have a hormone treatment?
Hi Helen, glad Cape is working for you. I had a dose reduction after cycle 6 which helped enormously although side effects were not that bad, but it is all relative I suppose. Regarding alcohol, I was never told not to drink it was just that I lost my sense of taste so wine tasted like vinegar, not very nice. Fortunately, taste buds are back to normal and I am enjoying the odd glass or two of wine:-)
Have a good week all
Hello Helen, glad you are doing well on Cape. I'm glad your hands are OK, but shame about your feet. I have had peripheral nueropathy since 2011 when I had my original IV chemo. The Cape definitely doesn't help either. Yes, the effects are cumulative, aren't they?
No idea why you can't have alcohol - it's never been a problem for me as I don't drink (just don't like it!). Is it worth asking your Onc at your next visit?
Hugs and best wishes to all. Barton.x
Hello george, re your query - I had either 8 or 9 weeks off over Christmas, then one Cape cycle, then the second one since restarting was cancelled, so I recovered quite quickly after the one cycle. Onc next Thursday, and, hopefully, my blood will be OK, so should restart next week. I was told I couldn't have another CT scan until I had done 3 cycles back on Cape, so that has been delayed too. To drink, I have bought some Soda water to try, but haven't tried it yet.
Wow - Portugal! I hope you have a wonderful time.
How long has your Cape break been, Barton? I have been chemo free for 5 weeks now and, I agree, while you are on chemo you do learn to adapt/live with side effects but, once you come off it, you realise how rubbish it actually is. However, I am not moaning as it has done its job for me for nearly 2 years now. Long may it continue for all of us. I am making the most of my 'free' time as I know I will feel poorly after op, but it will be worth it (fingers crossed). Off to Portugal on Saturday, until Thursday although doubt I will get insurance so will make sure I don't take part in any adventure sports (as if!!).
Let us know how you get on when you see your onc, Barton. Sure uggers will have been behaving. Hope you have found a drink that you enjoy
Great to hear from you, George! So glad you are feeling well on your Cape break - I'm with you there. You don't really realise how cr*P you feel until you start feeling better. I definitely have more energy now, but of course worried about what the little *uggers are doing in there! Probably having a field-day!
Glad you said when your op is - I keep forgetting! Please do keep in touch and let us know how you are doing.
Racer - take it easy as much as you can (probably very difficult with young children). Glad you managed to enjoy your night in the posh hotel, even though you couldn't enjoy a special breakfast. Hope they let you out of hospital soon, but not before you are comfortable again.
Hugs to all. Barton.x
sorry to hear you have been having such a rough time with your bloods. Hopefully, thinks will settle down soon and they will finalise a plan. I know it must be very frustrating. Pleased to hear you got to stay in a posh hotel; important to treat ourselves while we can.
Barton, hope you get things sorted too so you can restart Cape again. Regarding drinks, I tend to drink fizzy water with a slice of lemon as I find it very refreshing.(I have to admit, I am partial to a glass of red wine now I am on a chemo break. Needs must ). Looks like op going ahead 2 weeks today, depending on availability of HDU bed. Yikes. Making the most of being chemo free, feels good to get my body back if only for a short time.
Hope all goes well with treatments.
Good to hear from you, racer, but so sorry you have been feeling so unwell. Another night in hospital - you poor thing. I hope they are looking after you properly. Sorry you had to wait so long for a bed.
Such a shame about your 2 days in Somerset - I bet you were looking forward to those. I hope you managed to get your night in the posh hotel, as you don't say.
Glad I'm not the only one struggling with what to drink. I can drink milk, as long as it is either really cold or really hot - can't drink it in the inbetween temperatures though (I know, I'm really odd!). I like hot chocolate, but of course that has way too much sugar, so have to limit myself to one every few days. Oh well, back to the water. Actually, I don't drink that "straight" - I add a tiny bit of lemonade, which flavours it a bit without adding too much sugar or artificial sweeteners. That is quite refreshing.
I do hope you are put of hospital soon, and that they sort your blood out for you - my problems are nothing compared to yours.
Hugs and good luck. Barton.x
Hope you are OK, racer. You have been silent for nearly a week.
This thread has been very quiet recently.
I'm still off Cape at the moment due to the high Creatinine in my blood at the last test. See Onc next Thursday. Have been drinking like mad (no, not alcohol!) to try to help, but to be honest, get so sick of coffee and water. It's difficult to think of different things to drink that doesn't have sugar in it (don't take sugar in coffee or tea). Anything that flavours water has sugar (or worse, those artificial sweeteners) in it. Have thought of lemon, but the acid attacks your teeth! Tried tonic water (for night cramps really), and liked it, but when I researched what can cause high Creatinine levels, quinine came up! I'm feeling like I just can't win! Can anyone suggest anything?
Oh racer, so sorry to hear you are suffering so much! Re sleeping in your bed - have you tried sleeping sitting up, propped up by a load of pillows? That is what I have to do when my back is really bad - it really helps. It might take a night or two to get used to, but I found it so much easier for getting in and out of bed for the loo, etc.
I hope you manage to sort out your bloods, etc, for the chemo next week. I know how frustrating it is being in a kind of limbo, with nothing happening. Your mind goes to all sorts of dark places. Try to stay calm, and think positive thoughts.
Oh racer, I'm so sorry to read about your hospital visit, and bringing up blood - that must have been very frightening. I hope they have sorted you out now, though.
I hope you feel better soon. Good luck with the antibiotics - hopefully they will head off any infection.
poor thing! Glad they sorted you with antibios tho.
does it help to sleep with a pillow between your knees? I find that helpful. My chiro told me to do that and havent had sciatice since. But your pains poss have a different cause.
Sorry you have bern having a rotten time, love, Moijan🛌💊. 🎀
Hi ladies, especially all those struggling at the moment. I keep an eye on this thread, having been on Cape/Xeloda in 2013 to offer any advice. I saw that Bousy is now coming off Cape, I'm sorry it hasn't worked for you but there are other treatments available. You mentioned eribulin and couldn't find a current thread. There is one, but it's hidden in the Living with Secondary BC section rather than this treatments section. Also, as it has been mispelt (Erubulin) it wouldn't come up on any searches. I've bumped it up for you, hopefully you will find some useful info there.
Ps also found this other thread in the Treatments section which I've now bumped up as well x
Hello Bousy - you are, of course, welcome to stay with us as well! I'm not trying to get rid of you! We are all always here for you as well. Please do keep in touch.
Thanks for your good wishes.
Thanks Barton. Hope everything goes well for you. Have looked for threads but none current. Will keep on bone mets thread.
Hello racer, sorry to read you are still having problems with your bloods. I'm with you today - I had Onc appointment this afternoon, only to be told that my Createnin level has shot up (is usually always fairly high, but has gone up to 162 this time). I had to stay for a bag of IV fluids, and Cape has been held off for 3 weeks. I will also have to have an Ultra Sound on my kidneys before then.
Good luck for the Cape next week - hope your platelets improve. I expect the transfusion will make you feel better too.
You stamp your feet if you need to!
Hello Bousy, so sorry to read that Cape hasn't worked for you. Wishing you good luck with your new treatment. Sorry, I can't help with advice on Eribulin as I haven't had it, but I'm sure someone will be along shortly to help. There is probably a thread to read for advice, etc.
Hugs and best wishes.
Been to see oncologist today to see if cape is working for me after 5 cycles.
Not good news I'm afraid. TM has gone up again. The tumour on my liver has grown from 21mm to 39 mm. The one on my lung only grown 1mm. Bones are quite stable with denosumab.
So I'm off cape and trying Faslodex hormone injections for 3 months to see if that works followed by another CT scan. If that doesn't work then going on Eribulin. Anyone any advice on eribulin?
Thought I would be on docataxel but they think that could have caused my perforated bowel last March.
Really hope this works.
Hello Sandra, so glad to hear you are feeling so much better on Cape! You have had such a good result so quickly! I hope you continue to improve. I'm also glad you feel so well on the Cape, but please be prepared (lots of hand and foot moisturisers) for the possibilty of sore hands and feet. Everyone is different, so hopefully you will be OK.
well done...an excellent positive approach...was wondering about your onc, they all have their own way of dealing with cancer patients and of course.......we...with metastases, find the word palliative hard to deal with as it is avery scary wordxxx
I was chatting to an onc nurse at a different centre recently and she referred to us( metastatic ladies ) as palliative during our conversation...I mentioned. that my hospital refer to our stage of illness as
'chronic cancer', which, of course, it is...and for me, I find it so helpful to think of it that way....xx
Sandra, doctors dont always use the best words.....But you have every right to all the information about your care, and if you feel you need to change......then you have a right to make that choice xxx
Enjoy the fact that the Cape seems to be working, Long may it continue xx
Hi, I started my first course of cap 11 days ago, and apart from feeling a bit nauseous I feel great, in fact better than I have done for a few months. The lymph nodes in my neck have all gone down, although i can still feel them, and I no longer feel like somebody is trying to strangle me! My breathing has improoved and i was able to join in the singing at Church last week, somthing that i had struggled to do when i was there a few weeks ago. I am amazed at how quickly the cap has worked especially as my oncologists, who is still not giving us much information, asked me if i would prefer to be passed on to the palliative care team rather than start chemo. I am due to see him again on the 15th, which is a bit longer in between chemo than the week, and if he still doesn't provide us with the information we have asked for I am going to ask to change onc.
I hope everyone else who is on cap is getting on ok an i hope you have a good weekend.
Yes Racer, well done...have a good weekend.......and eat/drink frequent smaller meals, if not that hungery xxx