Hello everybody. Wishing everyone with scans coming up, or waiting for results, good luck. I, too, am supposed to be having a CT scan soon in order to get a baseline for the new chemo. The dye is called Contrast, and, I think, is iodine. You have to tell them if you have an allergy to iodine.
Thank you all, again, for your best wishes.
Good Morning Linda,
Can I share some experience regarding the scan report. This was happened in July last year, lymphoma nurse refered me back to GP bacause I had serve pain in my arm for long time and I have been taken strong pain killers. Then I had a CT scan and Pet scan(with dye,may be worng name) I was in Emergency by accident due to I nearly fell when I I had the biopsy. They insisted to keep me in hospital for one night. The doctor and oncologist came to see me. I was confused so I was brave enough to ask the scan report, the doctor said: 'we are not suppose to give you the report, but you asked so he printed 2 pages out of 9 pages. I hope this experience will help.
Thank you all your brave ladies share precious experiences here.
Good Luck with eneryone.
i expect (hope ) something else might be offered, but my cells keep changing their dna...am now waiting for that wonder drug which is targeted at us mets Ladies....the one which is supposed to remove something from our bodies, .....chemo brain today and had a visit to a+E, thankfully not too long a visit this time.
love and 🤗
BARTON, very best wishes for your next chemo, whichever it is. I hadn’t got a choice really, only taxol or not....but sometimes that’s the way of things.
keep us in the loop sweetie....there we are, BARTON, Nicky and I, we should start a new thread called
‘new adventure down the chemo route! Would be a new venture....I’ll see what comes upxxx
write formally, but politely and explain that you would like copies of all your gp letters as previously requested. If you write then they will have to give them to you. Otherwise, you could ask your gp to print them off...this is all your right, they must give them to you. And when you go, take an advocate who can act as a witness.
lindy, it may not feel like it, but you are in charge of your care...and you have as we all do...a right to copies of anything. The tumour markers are not always relevant, I’ll be getting mine..but onc has warned me they will rise at first. So not to worry. You can also have copies of your blood results. So ask away.
Sorry to hear that Cape has stopped being effective for you. It's a good chemo that does give many months, or years, of stability to so many ladies who are on it. With your experience of the regime and the SEs I'm sure you will continue to pop in on thus thread, just as I have done some 3 years after finishing Cape. It's always good to share what you know especially to newly diagnosed secondary ladies (and gents).
I hope the new chemo/s are kind to you and they sort out the little uggers. I have found it very unnerving when I change treatments as its a case of better the devil you know! Take time to settle in and share any info you have, Vinorelbine has been mentioned as a chemo I would have but it's not something I'll be starting just yet - I think (still waiting for The Plan!)
Moijan - the port should give you so much less stress and pain once its in place, I know they can be used almost on the day they are fitted. It is so much quicker for the nurses as well, they prefer them almost as much as us patients do as they no longer have to hunt-the-vein. Just relax when it's done, they will probably give you a sedative unless you are having it done under GA (which isnt very common). A bit of bruising afterwards but it should be good to go. A long time ago there were discussions about having numbing cream to apply before its used each time but I've never needed it and I don't think many of us do (correct me if I'm wrong, please). You'll get used to the access procedure so you can keep a check on anyone doing anything differently especially regarding risk of infection.
Hi to everyone else on Cape, or other treatments, hope things are going well and SEs noit causing too many problems.
Hello Kate, Linda, Phoebe and Tatyana. Thank you all so much for your kind words. You have all been just as much support to each other and everyone - just a bit newer to the thread . I'm sure you will all continue to be (as well as everyone else who posts on this thread and others).
I'm sorry to be leaving you, but, as I said, I will look in on you - help when I can, and to make sure you are all behaving yourselves
Hugs and best wishes. Barton.x
Very sorry to read you’re having to change your treatment Barton. Hope the new one works well for you, and is kind to you. Best wishes, Kxx
Oh Barton, so sorry to hear that Cape is no longer working for you. You have been an inspiration to so many over the past 3 years and have helped so much. All the best on your new chemo.
love Bon xx
Oh, Barton, so sorry it has stopped working for youxx must be quite a shock after all that timexx
goodluck on the new drug I too am having a portocath fitted, on my next week off. Let usknow how it goes,
everyone tells me that their port insertion was the best thing they ever did. Met a lady today having her first chemo the day after her port insertion...she said it hadn’t hurt at allxx
love and hugs,
Just a short note to let everyone know that I saw my Onc this afternoon and was told my run on Cape is over after 3.5years. My TM's have been rising quite steeply recently and I have been told it has stopped working (had worked that out for myself ). I had been researching Vinorelbine, as last time I saw Onc (different one), I was told it would probably be Vin. However, I was told today I would be having weekly IV doses of Doxorubicin for 6 weeks, then probably Vin)- but no idea how often. I am having a portacath fitted next Tuesday, then first dose of Doxo the following week.
Anyway, I wish all of you long and successful runs on Cape, and I'll keep an eye on the thread, and help if I can.
Hugs and best wishes. Barton.x
Thank you BARTON, sat with fingers in bag of frozen peas...but a bit more unpleasant than cold cap, so was being rather inconsistent.
lovely nurses. As always...having port inserted on my week offX
Hello Lindyloo xx
have three monthly whole body mris now so one due in about 8 weeks.
how are you, tho?
Sorry to hear you are suffering, Moijan. Hope you get some answers and relief. Re the port - I had one in 2011 for my original chemo, and it was fantastically easy. In my opinion, much better than a PICC, although I have never had one of those (they sound like a nuisance to me!).
Hope everyone else is doing OK.
Hugs to all. Barton.x
Have an appt with onc tomorrow....but saw nurse spec today about a port.
my onc knows about the sore fingers and he will shortly know about all the other bits and peices on my growing list XX
hope you are ok?
Actually, for some reason am feeling less well today...sore fingers feet and nauseous.
Well, actually Lindy, don’t think I did Have memory probs, as was at university the whole time, but did get a bit low in mood and kept getting cellulitis. I found I was pretty sensitive as well.
my treatment, well at leat 5 morecycles and maybe 2 after that.
hope you are having a great weekendxxx
Hi Phoebe, my primary has never been found, last time I said this it was suggested to me that I didn’t have cancer, if only! So will say they are 99.999% sure it’s breast due to my lymph node biopsy, and I have mets in my upper spine, talking to my Onc they don’t seem to do TM’s but I wondered if that was for certain types/stages of cancer and what the reasons are for doing/not doing them? Liver function tests make sense but don’t know if that eliminates reason to do TM’s too or not. Hope your liver function results are good, Best, Kxx
I was wondering about that too Kate as TMs have never been mentioned to me; they tend to look at my liver function tests instead.
Does anyone know if there’s a protocol to follow re tumour markers? Only I believe some Onc’s don’t do them, don’t think mine does, so wondered why? Thanks
Hi Linda, Barton and anyone else with chemo brain!
If I remember correctly (ha ha, is that possible as a fellow sufferer?) capecitabine is changed into the chemo drug 5FU when it enters the blood, after being ingested. 5FU is the ‘F’ element in FEC and is known to cause memory problems, or at least studies have shown that it does. It’s not surprising if, like me, you have had both FEC and capecitabine that your memory is not as sharp. Obviously we are also aging so there will be an element of this as well especially if you are in your 50s, 60’s or 70’s. Having said that I think my memory is better than my husband’s who has the attention span of a goldfish and no excuses. I have always told my daughters, even when I was in my 30s and 40s, to write things down as they would inevitably tell me something that I was meant to remember just when I was in the middle of doing something else as I would forget things - but that comes of being a multi-tasking female.
Linda, no set plan yet for treatment, MRI is still not reported but I did have a second opinion this week so we will see what comes from that. Although it’s probably doing me no good at all it is nice to be off chemo as I had been on one sort or another for the last few years. I’m still taking the exemestane and enjoying a bit of time away from hospitals and blood tests to be honest!
Ps edited this reply once I re read it and realised it didn’t make complete sense. Can’t believe it that there were that many typos or autocorrections
Hi Lozzer, just to add to what Nicky and Lindy have said...when I had problems with my jaw after some dental work I had to have done, I had to stop Denosumab for a while. My Onc explained to me that it stays in your system a long time and had said to me previously not to worry if I missed a month. Think it is often prescribed to fit in with other treatment, and probably like to give it on a regular cycle wether that’s 4 or 6 weekly.Kxx
Hello Tatyana, glad to hear you are feeling ok after your first cycle - long may it continue!
Re the Denosumab discussion - I have my jab 6weekly as it fits in with the Cape cycles. I wasn't actually offered 4 weekly, but as it would mean extra visits to the hosp, wouldn't want that anyway.
Lindy, re Tm's - mine originally stayed around the mid twenties when I first started Cape, then they stayed steady for a while around the mid 30's, but have been creeping up a lot recently. The last time they were done (5 weeks ago - due to be done again on Tuesdays blood test for Onc visit on Thursday), they were 166. That is the highest they have ever been. Like George, my TM's are quite a good indication of how things are going (it isn't for a lot of people).
You also ask about memory problems on Cape. I have noticed my memory is a lot worse the last few years. I think it is more a combination of my previous IV chemos (FEC-T) in 2011, Cape and getting older. I find the problem being rather annoying when everyone else says I am wrong about stuff when I know I am remebering correctly and they are wrong (not everyones memory is perfect, although I have one particular friend who thinks hers is ) - they just assume it is me who is mistaken!
George - enjoy your Hol - I expect you are beginning to get excited now.
Hugs to all. Barton.x
Hi George, don’t know if you’re familiar with Manchester but can recommend Mackie Mayor in the northern quarter if you haven’t already decided where you’re going for the rest of your weekend. It’s different food stalls under one roof in one of the old Smithfield market buildings, there’s all types of food and if there’s a group of you can order from different places and eat togther, like motorway services but it, and the food, are nothing like that!!! They do a good roast on Sundays too!
I started off on Denosumab every 4 weeks as that was, at the time, the standard dosing cycle (this was 4-5 years ago) but this was moved to 6 weekly when I was on IV chemo as it made sense to coincide the times I was at the hospital. Maybe they will give you Denosumab 4 weekly for a few cycles and move you to 6 weekly, you can always ask. There’s certainly nothing unusual about either of those cycles, it’s just what fits in with their policy and what you want to do.