Carolyn, so sorry....I know what you mean about bring aftaid to sneeze! I have hairlne rib fractures and we never know do we?
hope you feel better soon. Hugs
Feel better soon Carolyn! I hope you have some extra soft tissues! I like the ones with lotion! Curl up with a blanket and a bag of chocolates! I've been lucky too, no cold in four years! I don't ever remember missing even a year without a cold! I don't know how I've gone this long without one. I work in a germ factory and hubby is always getting nasty ones. I'm not bragging though..don't want to wish it on myself!
Carolyn, you poor lamb! Have txted you. Please get well soon - we need another coffee meeting! Stay warm.
Chris and Ladybird, Sounds like a calm visit with no surprises! Going to lunch is always a wonderful treat. My hubby and I both work and are off Tues. and Thurs. We enjoy going out for a treat on those days instead of during the busy weekends! Good luck with the scan and results. Try not to suffer too much with the notorious scanxiety. It gets us all! FF
Hi Chris, glad to hear all went well at the Christie, I cannot fault this hospital and all the staff they are wonderful arn't they! I had my CT there 2 wks ago and everything went like clockwork. (Didn't get whisked off for lunch afterwards though! 😀 good luck with results, please let us know how she gets on.
Hugs Janette x
Hello Maldives, sorry to hear you had a wobbly yesterday. I hope everything goes OK tomorrow though.
I think Moijan has pointed you in the right direction for the Cape thread.
My feet were terrible after FEC-T the 1st time round, no toenails, hard skin and corns. In the end my GP referred me to an NHS chiropodist which has been a godsend. Especially as since mets I can't seem to bend enough to cut my (now regrown) toenails. Has taken about 3 years to get them looking like human feet again!
Now I keep up with Chiropody every 2 months, a pedicure alternate months, reflexology every fortnight, in fact any excuse to whip em out and have something done.
Coupled with a bit of cream every now and then they've stood up to Cape pretty well, so far, fingers crossed.
Hi Moijan and other ladies with toenail problems! I remember when I was on Cape a few ladies started mentioning that their big toe nails were really bad and ingrowing. I thought it was just me. I think all said it was their left toe but can't remember now it was so long ago. My toe nails have never really recovered from Cape followed shortly by Taxotere and then don't get me started on how Herceptin seems to thin my fingernails so they are like razors - I regularly slice myself! And this is with very short nails as they don't grow long anymore before they split. Toenails tend to be horrible and thick, especially the big toe nails. Sorry for the description but you are not alone. I don't know if any of you remember watching the original Dumber and Dumber film (my 2 daughters loved it so we've all seen it many times). When Lloyd was getting pedicured for his date night they used an electric sander on his clawlike toenails - that's how I feel mine are now - but at least it makes me laugh if I'm trying to cut them.
Morning ladies, oh why does the "onc appt phobia" not get any easier??? Feel like running for the hills 😨 although I got fantastic TM results I do know they don't always go hand in hand with CT results! My appt isn't until 3.45 this afternoon so got to try and keep busy til then!!!
Good luck to those having scans / results and new treatments.
Hugs Janette xxxx
Maldives...here is th cape thread...
its been hidden away!
i dont recall talking about toenails...but as you brought it up...mine are quite awful! Awful toenails on
Awful Feet! And like you, my fingernails...well one thumb...is split down the middle...have to keep applying clear polish to stop it catching on things....maybe I should put some on my toenails too!
actually...am I the only one who cant easily cut my toenails any more?
i have dreadful probs every now and then with an ingrowing big toe nail?
I kind of nursed myself through it last time by putting a paultice on it, but long term I need help.
i am quite ashamed of my toenails/feet anyway!
Hello Maldives, thanks for getting back to us to let us know how you are getting on - it is a relief to hear from you. I won't go in to the details about Cape, because you have said you have previously done it, so you know all the tips and tricks. However, please join us for a chat on the Capecitabine thread if you are up to it.
Good luck with the chance of getting on a trial - hopefully you will be considered a good candidate.
Hello Janette, lovely to see you back, but can quite understand you taking a rest from the Forum for a bit - it can be necessary sometimes.
Can't get over your wonderful TM results! That is so impressive! Enjoy the good news and celebrate.
Hi Maldives, I read your post. I've been at the Marsden for nearly 11years it was just the hospital they sent me to at the beginning. I consider myself very lucky being there. Not sure about trials but they are always at the cutting edge of treatment . I'm going back on Taxol from next Wednesday which I'm not looking forward too !! Need to start to preparing myself...
i was on Cap for 3 and a half years an it worked really well for me. Like you my hands suffered a bit but my feet were the worst. A friend bought me a cream called Udderly Smooth Cream . They told me about it at the Marsden .. I think the extra care one was developed at docs request to help patients with sore feet . Sounds crazy when u write it !!! Sorry if it's something you already know about but I found it helped.
i know what you mean re feeling numb ... I just keep hoping it's a very bad dream .... if only....
big hugs to all of us xx
Maldives, Happy to see you posting! I figured with everything going on you might just pack your bag, catch a ride and go off on an adventure! Gosh, how I'd love too! Now back to reality! I think Nicky had a great idea on the oral bone strengthener. Hope that could work for you! I was wondering why you were taken off of capecitabine? I hope it is easy on you this time too! Best of luck with the Royal Marsden! FF
Janette, Welcome back! It's OK to take a break! Most of the time I love coming here to chat, to be supportive, or understood!! Other times when when we lose one of our "love bugs" I want to scream, stomp my feet and bury my head in the sand so deep my bottoms up. I sure hope I have some nice knickers on if I manage to get my bottom up!! Thinking I need a nice hot pink pair with hearts! FF
PS: Good luck Thursday! One would think with markers that low that your results would be amazing! We still always have that shadow if doubt! I try to walk away after my scan, brush my hands, say scan done, it will be what it will be! Then I go out for a late morning breakfast. I have git better over the years at thus, unless I feel a difference then it's a whole different story!
Hi girls - need your help! I went to a BCC young women forum and they told us about a charity that would help for having weekend away or a bit of a besak in general. Cant remember the name!!!! Can anyone help? Trying to see if we can go awway for a couple of days just to change the air after the dx. Thanks xxxxx
Welcome back Janette - we all need to take a break at times so there's never a reason to apologise. Just come back into the family 😊 Good luck with the scan results but hoping that the fact your TMs are so low that you are not stressing too much.
Maldives. Sorry that you had a long time between scans, I had the same when I was very stable for about 4 years, ie no changes whatsoever. I asked for a CT as I had some pain in my hip and my oncologist was go smacked to see progression in my bones and also into my liver. A CT will show changes in the bone (or maybe it's only the newer machines?) and mine are always reported on even though the emphasis these days is how my liver is doing. Our hospital only uses bone scans for diagnostic purposes, not for checking how treatments are working so I suppose all places have their own ways of checking.
Just a quick question about your bone strengthen. I see you are going back onto zometa, did this stop for a while? Also, have you considered having Denosumab instead. It would mean not having to have an IV every 3 weeks, just a very quick (less than 1 minute!) subcutaneous injection. Just a thought as you will be on oral chemo rather than an IV one you'd only be going into hospital to be hooked up to have the bone juice.
Hi Maldives, have bern reading your posts with interest......am so sorty about your jaw / face problem....you have enough to contend with, but you do sound a little chirpier....I know things cant be at all easy xx
these awful spells, often go round in circles dont they...and then a little gem before another round xx have my toenails ( those that have survived) crossed for you and hope things are on the up and up
Hi Carolyn, how are you keeping my fellow choco-ohlic?? 😀
No don't seem to do bone scans anymore, think iv had 4 since dx 3 years ago. My onc told me that they don't tend to do them so much now.
Hugs J xxx
Evening Natalie , thanks very much . Your TM looks amazing !!! Well done you !!
fingers crossed CT will be good too.
Evening ladies, sorry I've not been on for a while I've been having a little break from the forum, it really got to me the loss of Marirose and Ellie (as I'm sure it did most of you too!)
Anyway, I hope you are all keeping well!!
Donna, welcome to the forum, sorry to hear things are not great at the moment, there is always someone on here to give advice or even to just sound off to when everything gets a bit too much! good luck with your treatment.
Well it's onc appt Thursday for CT results 😨 so the usual jitters have kicked in! But I did ring my bcn last week for my TM results and they are now at 19!!! I was so pleased to hear that, but don't like to get too excited until I've seen onc for CT results!
Take care ladies, hugs Janette xxxx
Have replied on your other thread. I hadn't seen this post from yesterday so weren't aware you are at The Marsden - they will I'm sure sort out the best plan for you. I had a second opinion there last week and they are certainly cutting edge with what they can offer, should my current treatment not work or fail in the future. One of the recommendations of the senior Prof there (at the recent oncology conference in Copenhagen) was the importance of a re-biopsy therefore I am sure they would be open to that suggestion should you want to request one.
Good luck and let us know how you get on. We are all in the same boat here, all with SBC and the uncertainty and worries that it brings us and our loved ones. At least here we can rant and explain how we are feeling knowing that there is complete understanding from you fellow SBC friends.
Hi Paula, many thanks for reading my message . I'm glad it's at least given you some positivity.... we all need plenty of that !! It's strange how we all have treatments in different formats !! Each onc has their own way I suppose. I'm very lucky I've always been at the Marsden from day one an I think they have always helped me manage the ups an downs . However today was different ....an I truly feel like the very first time . Hopefully I will get my fighting outfit on tomorrow...Sounds like your doing well ....an managing treatment well which is so important. I will be watching out for your updates in future....
ive cried all day an feel totally exhausted so hopefully I may get some sleep ....
Thanks for taking the time to message me an sending u buckets of positive thoughts.
Wow, your history has given me hope that you are surviving SBC for so long. I have extensive mets to lungs, liver, several lymph nodes and bones. Unusually (I think) I had the lung and liver tumours 1st and then bones a few months later.
We are all different, I seem to be doing your treatment in reverse! After Tamoxifen for a couple of years i switched to Letrozole and Zoladex when progressed, more progression switched to Exemastane and then Xeloda since last June.
I am not one of the many ladies on here that have had liver mets for years and there are a few but it's 15 months since diagnosis and I feel better now than I did on DX. The liver and lung mets are asymptomatic and give me no trouble and I've had size reduction on my last scan.
Everyone is different and responds to different treatments. DO NOT LOSE HOPE, there are loads of treatments out there and I'm sure your ONC has the situation under control.
I know evey time I've had progression or changed treatment I've had a good cry and a few days of doom laden thoughts but once treatment is underway and something is being done I start feeling better and more in control.
Sending you a big hug at this scary time and wishing you all the best.
Hi, thanks for the reply anyway. I'm hoping there is someone in a similar situation that has had some positive experience!!! Hope your treatment continues to go well. An thanks for your support..feel like I'm falling to bits!!