Hello Linda, so glad you enjoyed the wedding! I hope the weather behaved itself for you.
In regards taste on Cape - I have found that my taste has altered slightly, but nowhere near as bad as IV chemo. Hopefully you shouldn't notice too much change.
Hello Linda, glad your mind has been eased a bit.
Forget about pills for a few days and just enjoy the wedding tomorrow!
Hello Moijan, just a quick note to wish you good luck with your whole body MRI scan next week.
Hello Linda, in response to your question re doses. I was started on 4000 mg per day (2000mg x 2), and was on that dose for quite a while (sorry - can't remember how long). I am shorter than you, but heavier, hence my original dose, I suppose. I was then allowed a dose reduction to 3600mg per day (your current dose) as I was suffering from very sore hands. Since restarting Cape in August, I have been on a further dose reduction, and am on 3000mg per day. I am finding this dose a lot easier, but I am aware that if my TM's continue to rise, my dose will be increased again.
I hope this helps. I think it is worth you trying this dose for a few cycles, and see how it goes. If, however, you have any severe or unexpected se's, please contact your Onc or chemo unit as soon as possible.
Hugs to all. Barton.x
Ps. Good to hear from you, Kirky! Good luck.
your dose sounds about right to me. It's based on body surface area ( how to calculate your bsa here http://halls.md/body-surface-area/bsa.htm )
I make your bsa 1.75 which you multiply by the standard dose of 1200mg twice a day. So you max dose is 2100mg twice a day. Your onc has started you on 1800mg which I think is fairly normal.
I am 5 10" and was on 2500mg but got a dose reduction as was having a few side effects.
Hope all goes well. I'm on cycle 23 now and has kept me stable.
Lots of luck
Sorry to hear aboui hunt the vein and the aftermath. Your veins must be extremely well used after all this time. You wonder how they survive for as long as they do. Hugs while waiting for the results. Hope they are good. Bon x
Hello Linda, the early mornings for the 2 weeks of tablet taking nearly kill me - I really looked forward to my week off!
Regarding your creatinie levels - mine have always been higher than the average, and my GP used to keep an eye on them and now my Onc does. Mine are usually around 120-ish, but once went up to over 160. They wouldn't give me the pills (or my Denosumab injection) that day, and I had to have 2 units of fluid. My bloods had improved by the following week when I had both pills and jab. The moral of that story is - drink loads before your blood test!
Nicky - sorry to read about your hunt the vein experience. Luckily I haven't had that problem yet, but my one really good vein is gradually getting shy! Good luck for your scan results.
Hugs to all. Barton.x
i was never that exact with the timing of my doses just made sure they were about 12 hours apart and either with or within 30 mins of having food. If you eat early one day just have a little treat later on such as a cake or yogurt or a biscuit with a cup of tea and take them with that. You can then 'justify' the treat 😊 I always did!
ps good to hear you've had no more pain, whatever causes it it's not very nice. Also don't write off the fact you can't go for an Indian meal again, there's no reason not to, just do what you feel OK with doing. OK you may have to take the tablets whilst out but I used to do it all the time. The actual time you take each day's tablet is not set in stone, get it to work around what you are doing. If you're late one morning take them later that evening and vice versa
pps thanks for all the well wishes for my scan, it was the usual hunt a vein which was horrible, about 5 attempts so I'm bruised on both arms now as they had to end up using my 'bad' arm which they have done in the past. This then delayed the actual scan so I was there for about 2 and a half hours in total and of course hadn't eaten for hours due to my hospitals regime of no food for 4 hours before a scan. Not a happy bunny but won't be stressing about the results until nearer the time of my onc appointment as I can't see the point after all these years!
Hello Linda - I don't know if you realise, but the pills should be taken within half an hour of eating, not exactly half an hour afterwards - hopefully that will save a bit of anxiety! Marli is right, you don't have to have eaten a full meal - as long as you take them with, or soon after, food, you are OK. I sometimes just eat a coupke of biscuits, or a slice of toast, and have found that is OK. I'm not a breakfast person, so find the morning pills the most difficult. They do advise you to take the pills 12 hours apart (or as close as possible). I take mine at around 6 in the morning (usually going back to sleep for a bit afterwards as I am retired now), and 6-ish at night as I don't like to eat late.
Hugs, and good luck.
Ps hope your scan went OK today, Nicky.
Hi Linda. Don't know whether this is any help but I have my morning ones at about 7.30 after breakfast and second lot at about 7.30 in the evening after tea. I understand from posts on here that a sandwich counts as a meal and you can take them after that. so you can have that after your evening meal. Marli xx
It was a very busy weekend for me so I didn't have a chance to read, let alone reply to any posts! Plus my iPad wouldn't pick up our wifi signal and OH has been using the laptop for work, using my phone is useless and I prefer a bigger screen and keyboard for things like this.
In answer to your questions my liver mets got picked up on a CT scan I had requested. I hadn't had one for about a year as my bone mets had been very stable for about 4 years. I had some hip pain which didn't show up on an X Ray so insisted on a CT to check my bone mets. This showed the bone mets had increased and that I had lesions, a few, in my liver. I had not had any liver pain or any symptoms and because I hadn't had a blood test in ages, certainly not a liver function test, there was no other signs. My liver function results were raised at times, especially on Capecitabine, sometimes to the extent I couldn't have chemo, ie had to delay the next cycle. If ever they have been raised, and by that I mean quite a bit above the normal range,I have felt that my liver wasn't coping very well and generally felt uncomfortable. Currently they are at the low end of normal so I am hoping that eribulin has continued to work well, I will find out in a week or so when I get the results of my CT scan which I'm having later today, eek, scanxiety awaits.
Hope you are feeling OK and it was just a bit of indigestion. Definitely ask your oncologist any questions that you feel comfortable with. I have got used to asking about my LFT results and understand them reasonably well so much so that my current onc knows that I want that info just as much as knowing what my other blood results show such as wbc, neuts etc. In fact the other month when I had a raised temperature and had to get checked out by the chemo ward the onc on duty told me one of my LFT's was raised. When I asked him which one, and what was the reading he was quite flummoxed and said he'd never been asked by a patient for so much detail, so he had to go away and check.
Hello Marli, sorry you are suffering from dry skin. I tend to use Nivea Extreme Hydration body lotion for dry body skin, and find that very good. It smells pleasant, and soaks in nice and quickly.
Afternoon everyone. Hope you are all doing well.
Looking for some advice regarding dry skin. Noticed yesterday that skin on chest was very dry and then checking this morning most of body feels dry.
Is this a SE of the cape. Have applied Aveeno to chest this morning in hope that it helps. Anyone else have this. Any advice much appreciated..Marli xx
I've now come to the end of my treatment options just got to get myself in a positive mindset. I still don't feel that I am on deaths door. I'm going to a two day conference in Birmingham this Saturday and Sunday called, I Can Do It. It is all hahouse authors so I know they will be inspirational, including Anita Moorjani. I've got two tickets but am only using one as my husband does not want to attend to see the "quacks" so if anyone wants other ticket let me know.
Hello Oggy, lovely to hear about your birthday and retirement party, and what a wonderful surprise it must have been to have your daughter turn up!
Glad you are doing OK so far on Cape. Good luck for your future cycles.
hi Maria i have just started my second cycle of cape and was worried too but the comments and support on here settled me. As it happens no major s/e just dizzy and tired. I started using e45 the week before on my hands and feet ....like obsessively 6 /7 times a day, have got better now just do it twice a day and have had no problems. Its a scary club to be in but this link I find really useful not least because of how long people have been around.
To others on here sorry been quiet had the most fantastic retirement/birthday party surprise last friday, my daughter turned up from san francisco (not seen her since the diagnosis) so been a busy week, although she is gone again today.I am determined to get out there feb time for long holiday results permitting
Good luck Maria ... and thanks again to all on here
Hello Marli, so glad you are on the ball! Well done. You could very well be right, re work load, but it's a shame he had to lie to you! Sorry you are having to go through six-monthly operations re your stents - you should have been told that, surely? I suppose it depends on how necessary they were. They probably wouldn't have spent time and money on something that wasn't entirely necessary. It would have been good to have been prepared for that, though.
My liver mets have increased and decreased over time, depending on treatments, so my next CT will show what's happening. When first dx with liver mets I had a few small ones scattered around which all responded to Capecitabine to the extent that I was left with only one visible one (the others had shrunk in size and didnt appear on a further CT or MRI) The one that was left was the one they could monitor and it was when this increased slightly in size they knew Cape had stopped being effective. It shrunk again on subsequent treatment but the last lot of HER2 targetted treatment didn't work effectively and it continued to grow to about 4-5cm, eeek. Since then eribulin has reduced it after 3 cycles and I now wait to see if it continued to shrink after the last 5 cycles. Other smaller lesions had appeared before starting eribulin but none of these were mentioned in the last CT report, or seen on the scan itself, so had either gone or were too small, which is a relief. I don't mind replying with this information on here as it may be of use to someone else. My hospital isnt particularly big, it serves a town rather than a city, and the scan detail I see is the one that radiology send to my oncologist and he justs turns the screen round to me so I can read it! I expect all oncs get similar info, it just depends on how much your oncologist wants to tell you, I'm sure they think most of us don't want to know. However over the years my onc has got to know me and knows there's no point pulling the wool over my eyes. I have often suggested certain things to him, that I've learnt from here, that he hasn't thought about - quite scary really when I often know more about the current status of say a drug than he does. With regards to scans it is likely your GP weill also get a copy of any reports and images, either electronically or by letter so you can get them from your GP, again I think you are entitled to them.
ps Hi Barton, I'm going to enjoy a few weeks away from medical institutions before my next treatment starts so I'm not stressing. That's until scanxiety starts again in a few weeks for my scan results.
Yes I know. Did say this and really got nowhere so felt easier to wait and see the onc. I think it is more to do with workload. Have been very disappointed my treatment by Urology across the board. Had to have kidney stents inserted to help keep kidneys healthy during chemo. They didn' t tell me they needed replacing every 6 months. Communication has been very poor. Onc is aware of my thoughts. x Marli
Hello Marli, your consultant cannot, by law, refuse to let you have a copy of the report. So what that the report has technical words in it - has he/she never heard of Google? If I don't understand a word or phrase in my reports (and I sometimes don't), I use Google! If you want the report, you should insist when you see him/her.
I rang Urology to ask for reports , especially of the minor operation I had 2 weeks ago . Was told the
Consultant did't send reports because of all the medical language used!!Offered me a clinic appointment though. Am going to ask the Onc next week for copies.Marli x
Hello Linda, no, not a private patient! Couldn't afford that! No, everyone has the right to see anything written about them and all I have done is exercise my rights. I had to fill out a form, which was readily available in the Onc department. I know a lot of people really don't want to know any details (and I fully respect their choice), however, I would rather know everything I possibly can. Some hospitals routinely offer the chance of seeing the actual scans, but I have only ever been given the chance once. The excuse I have been given before is that it needs an expert to spot it - but when I finally got a look, there seemed plenty there, to me! I think the real reason is that they just can't afford the time of going through stuff with me.
Ps - Hello Nicky, good luck with getting on your trial. Shame about the greater travel distance, though.
Sorry I haven't got back to you sooner but I've been a bit busy for the last few days and not able to log on - I can't cope with using my phone for looking at the website as the screen is way too small so I use my laptop or iPad. I know you asked me, and Barton, about scan reports etc. Everyone is entitled to have copies of all their reports and letters but most of us don't ask, in my case because I don't actually want to know! I do go through my CT images and report with my current onc when I have had one done which is helpful but at the beginning didn't even want to do that! I do get reports from my cardio oncologist (for heart related appointments) and also copies of any reports when I've had a second opinion for oncology (usually from The Marsden where I have been on several occasions) I think it's down to personal choice and also the fact that most patients don't know they are entitled to copies.
I have had great treatment at my local hospital and they have been totally on the ball about what is best for me and, if they can't offer it (ie NICE don't allow it on the NHS) they have referred me for second opinions to research hospitals where I can get the right drug/treatment. This is likely to happen for my next treatment but will now mean I have a lot more upheaval as currently I only drive about 5 miles to my local hospital whereas any changes will involve a lot longer. Having said that if I can get something that is very suited to my type of BC then I will travel for it rather than go onto something that I might not benefit from as much.
Hello Linda, yes, I get a copy of the written report that goes to my Onc. I also ask for copies of all reports after my Onc visit at Clinic appointments (which reminds me, I haven't had a copy for at least the last 2 visits!).
I do have bone mets - in several places actually. Hips, some ribs and pelvis. Possibly other places, but they only scan my torso! I also have some soft tissue mets, but, as of my last CT scan, no lung mets.
Good luck. Hugs. Barton.x
Hello Linda, so glad you have got a started delay on the Cape pills - it means you will be able to enjoy the wedding properly! Well done!
I ask for copies of scans, etc but my Oncs secretary keeps forgetting to send them. I keep having to ring and request them. She is very nice about it and always apologises.
Good luck, and let us know how the wedding goes.
I see from your other post that all went well today at the onc appt. It will be good to have a bit of a break between treatments in any case as I feel at times when I've gone straight from one to another that my body hasnt had time to recovery fully. Make the most of it and enjoy the wedding.
Whilst on Cape I was able to get on with everything as usual. It did take a couple of cycles to feel perfectly OK on it, I think my body was just getting used to the trickle feed of chemo each day so its not surprising. Just listen to your body and get the dose changed/reduced if you feel you need it ie you are not coping well with side effects. Also a break of an extra week here and there I'm sure will not affect its effectiveness. I did have a drink, or 2, whilst on Cape and have also done so on any other treatment I've been on as and when I feel I want to. I decided long ago not to allow this disease to change the way I live my life so carry on doing all the things I used to do including not changing what I eat and drink plus exercising which ever way suits me at the time - currently lots of walking but not long distances, just regular walks of a mile or so which I find good for clearing the mind. It's kept me (resonably!) sane over the past 9+ years of mets.
Hello Maria, sorry you have had to join us, but welcome.
In answer to your two questions - firstly, the blood. I have been on Cape for just over 3 years now (with several breaks inbetween) and have had no serious issues with it affecting my blood. I have had 2 blood transfusions over the 3 years, but widely spaced, and the first was well over a year after starting. I do have problems with my Creatinine levels being high, but I did have had that problem for many years before Cape. I have to make sure I drink lots each day. However, drinking lots while on Cape is recommended anyway as it is an extremely drying chemo (hence a lot of the hand and foot problems).
Secondly, the question about your hands and feet. The best thing I can suggest is to read back over this thread. There is lots of really good advice on here going back over many years. The main thing is to keep moisturising as much as possible.
Good luck, and keep in touch.