Bone mets - please join in

[rosie53]

Carolyn, hope your feeling a bit better lovely, missing my chocolate/letrozole buddy! 😆😆
Hugs Janette xxx

[rosie53]

Morning ladies.
FF, your weather is crazy isn't it! I remember one year going to New York in November, the first couple of days it was sooo cold then 2 days later we were in jeans and tee shirts! It's my 50th birthday in November and we are planning on going to new York again we love that city so much but we have been 4 times now so maybe we should try somewhere else!! There are so many parts of America i want to visit, we have friends who we met on our honeymoon 12 years ago who live in Michigan and would love to see them again, but also got San Francisco, Chicago and somewhere deep south I would like to see too!.....sorry ladies I've rambled on about stuff nothing to do with the C word!
Hugs Janette xxx

[Babsy]

Hi Avrelia, to be honest as you have secondaries the cancer has already spread. I like you have read that removing the primary does help ease the bodies load.  Many Of the ladies on here use an American website called Inspire to get links to research. Good luck with your decision xx 

[funnyface]

Strange weather here! Today it was in the low 60's. Running around without a coat. The temperature is dropping and by 1AM we are supposed to see snow starting. We are in the area for possibly 10+ inches. It is supposed to snow at 1 to 2 inches an hour and is going to be a heavy wet snow! We will  probably lose power on this one! Kerosene  heaters, generator and camping equipment ready!  Lots of food and wine! FF

[avrelia]

Thank you very much guys, that is how I am planning to decide, may be some intuition, combined with doctors opinion. I thrust my oncologist, do not know why, but she is a good person, hopefully a good doctor as well, haha I still remember the day, and I will probably always do, when she told me about my secondaries, because it was explicable that I asked her the question-HOW long do I have, then she told me that it is tooo early to tell-some women live 5, others,10 years,others even 20 years, so she cannot tell me for sure. The only thing she could tell me that I am never going to be an OLD lady, whatever this may mean....Creepey, isn't it? 

Still, I am scared, I am scared if I choose to have the surgery, of course if I have the option to choose, will this be better or not. Have read somewhere that by reducing the tumors inside your body you are making it less toxic or something. But if this makes it worse like, letting these cells invade some other parts of my body somehow....

On the other hand, an intervention is an intervention after all, andeverything is risky....But why is the surgery then A MUST for primaries. That should mean something, they are eliminating the breast tumor, and basically the difference between secondaries and primaries is that the former have some more....Any way sorry for my chaotic and moaning post, but my mood has been like that since my chemo is over. I have to organize myself and just enjoy life, let it happen...

Thanks you all of you for the time spent reading me and replyiing

[funnyface]

Avrelia, I'm not in the same boat with you.I didn't have a double whammy dx like you. I have heard some women keep the breast and feel they can monitor their treatment results by watching or feeling the breast tumor, others want it gone. I think research gives you both sides if the coin too. Seeking other ladies opinions and looking at research is a good idea, so you can form your own opinion. Whatever you decide you are comfortable with is what you need to do. Going into the oncologist office with your decision would probably be best! Good luck with YOUR choice!  FF

[JulieD]

Hi Avrelia,

My history is different, I had primary back in 1999 and secondaries in 2010 so I  can't talk from personal experience. However over the years there have been many women in a similar situation to you.

It seems that generally the medics don't like/want to operate on secondary women at least until they have shown a period of stability. Even then thee are different attitudes. However, if you feel you want it done and would feel emotionally and mentally better to have the cancer surgically removed then I  think you should continue to press for it. You can get second opinions, you can change teams, you can even change hospitals.

Over recent years there does seem to have been a slight change in opinion with some now thinking that operating to remove the original cancer may increase length of survival by lessening the cacer load in the body, though therr is no actual proof of that.

As I  said, I  think it's down to the individual and how they/you feel. Some don't want anymore invasive treatments than necessary and don't want surgery others want shot of the sight/reminder of the disease. I wish you luck whatever you decide.

[London1]

Avrelia, I was diagnosed primary Dec 13 and secondaries to liver and spine soon after. I had EC chemo too then tamoxifen and denosumab. At that time I sought surgery but was denied it, then seeking a second opinion had more scans which showed progression so I had docetaxol chemo. After that I had letrozole, and that keeps me stable. I sought surgery again and had a mastectomy July last year. The scar is horrid but less horrid than seeing a diseased breast. I'm monitored with blood tests and the last ones showed an increase in liver enzymes. Last Monday in the bath I suddenly saw a huge red rash like area over the scar and thought the worst, but later found out that it was just bruising even though nothing had happened to cause a bruise.

But despite all I'm very fit and healthy and the surgery was simple with no muscle taken no nodes taken and no need for radiotherapy, so I've had minimal side effects from surgery. Long story but I'm happy I had surgery But in looking through posts beforehand surgery is not often given to people like us who get primaries and secondaries found at the same time. Good luck in whatever you decide!

PS onc seems happy that although a scan coming up may show progression in the liver as otherwise I still have very good liver function I will most likely stay with another type of hormone treatment.

[avrelia]

Hi all, just wondering how many of you are in the same situation as me, I have been diagnozed July 2016 with primary and secondary at almost the same time, had 6 cycles of EC chemo, now on Tamoxifen and Zometa. I have had no surgery yet, and my oncologist is still thinking about that. Haveyou had surgeries, and what are the pros and cons of having one, what do you think. I know it may sound stupid, and we are not doctors and everyone's cancer is unique, but I do really need to listen to your experiences/opinions. Thanks

[stresshead]

Janette...so pleased to hear your news.

Carolyn..hope you are feeling better today and hitting the chocolate as normal. xx

[Carolyn52]

Hello ladies
Drippy nose not too bad today . Yikes horror but I didn't get up to mid day ..not like me !!
No Rudolph nose either so pound shop toilet rolls must be soft !!
Hope everyone else is feeling tickity boo ..i promise no more moaning about my cold here as most of you ladies have more serious problems to deal with !!
Hugs all xxxxx

[Barton]

Yep, you are definitely sick, Carolyn - not fancying chocolate!!!!!! Oh the horror!!! Terrys choc oranges will go out of business without you to support them! Hugs, and get well soon. Send hubby over for some more soft paper handkies - toilet paper is no good - you can't have a decent sneeze or nose blow with that! Sorry, probably TMI!

Hugs. Barton.x

[funnyface]

Carolyn, You sure know how to party!! I truly don't want to join you though! I see a glow is that Rudoph?!?! No, it's Carolyn's nose! Feel better soon! FF

[Carolyn52]

I know I'm poorly ..haven't eaten any choc for two days ..and I've got a good supply too !
Just crumpets with thick Cornish butter ..yum . Probably have a heart attack now with the extra fat !!
Off to bed now with lemsip, cough lozenges and toilet roll ....what more could anyone wish for ..ha ha.
Carolyn xxx

[bonariensis]

Hi Carolyn Sorry you are poorly. Keep warm, don't exert yourself and eat chocolate oranges?? you never know, they might have have something beneficial in them. Virtual germ free hugs B xx

[Moijan]

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

Moijanxx

[funnyface]

Achoo!!! Feel better soon!

[Carolyn52]

Hiya ff
I used up a box of the posh tissues a few days ago ..so using toilet roll now! I blame my son as he had a stinker cold ..didn't come into the house ..but delivered his dog and I bet the dog was carrying the germs somewhere !!
I tempted fate by saying to my sister last week ..I take vit c everyday and have been cold free for years !!
Aagh tissue !!
Xxxx

[funnyface]

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!

[Carolyn52]

Thanks Barton.
I haved texted you but I'm just being a wuss and its nothing to what the other ladies are going through here with their treatments.
I need to pull on my big girl pants and grow up !!
Carolyn xxx

[Barton]

Carolyn, you poor lamb! Have txted you. Please get well soon - we need another coffee meeting! Stay warm.

Hugs. Barton.x

[rosie53]

Hi Carolyn, aww sorry to hear you have the dreaded lurgy! You keep cosy on the sofa with the "poorly blanket" hey and you know what they say.....feed a cold starve a fever, so every cloud 😆😆
Hey FF, I'm always up for a pub lunch!
Hugs Janette xx

[Carolyn52]

Hello ladies
Hope everyone is enjoying a nice lazy Sunday morning ...I've not been on for a few days as I have a cold ..first one in three years so guess it was my turn to get one !!
Eating like a gremlin ..but afraid to sneeze to much as I might break a rib or something !
Lemsip and a toilet roll are my best friends at moment !!
Xx☺☺

[funnyface]

Jeanette, Maybe you, Chris and Ladybird could have a hospital and pub meet up!  FF

[funnyface]

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

[rosie53]

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

[Ladybird]

Hi Ladies
Chris checking back in for Ladybird.
Visit to Christies Salford yesterday went quite smoothly. Onc asked if any pain and reckoned her leg pain was due to sciatica.
Blood sample taken and ct scan booked....what more can you ask!
Whisked her away for a nice pub lunch in Cheshire.
Good to hear the good news from others.
Thanks for the comfort.
Xx

[JulieD]

woo hoo! Great news Jeanette!

[funnyface]

Getting my horn out for  Janette! Toot, toot, toot!! I want chocolate too!! FF

[Barton]

Janette - such good news! Brilliant - so pleased for you! Good news is always welcome.

Hugs. Barton.x

[Barton]

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.

Hugs. Barton.x

[rosie53]

Thanks Carolyn, oh I think a spot of chocolate is definitely called for! 😆😆
Janette xxx

[Carolyn52]

Whoop whoop ..my letrozole / choc buddy ..brilliant news bet u r going to celebrate later tonight !!
It's always nice to hear good things with treatments .
Carolyn xxxx

[rosie53]

Stable Mabel reporting in! 😆😆 all good with CT and markers in normal range!
Hugs Janette xx

[Carolyn52]

Jeanette
All the best for your scan results . Aagh such a late appointment ..why don't they do them first thing in morning !!
Maybe a bit of retail therapy ..nice latte and a Danish pastry would help today before you go !!
Hugs xxxxx

[kirky_68]

Hi Moijan

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.

[nicky08]

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.

Nicky x

[rosie53]

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 

[Moijan]

Maldives...here is th cape thread...

its been hidden away!

https://forum.breastcancercare.org.uk/t5/Treatments-and-medical-issues/Xeloda-Capecitabine-Your-Top-...

[Moijan]

Hi Maldives/Sue,

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!

[Maldives]

Hi moijan
Got the toenail thing mixed up. I thought it was donba 58 lol. Sorry donna.
I know it seems like a never ending circle.
But thats what it takes to keep me alive so i just get on with it. Its funny when they said my last scan everthing was stable, i knew it wasnt. Thats why he did all the tests and i was right. It pays to speak up if you dobt agree with something.
Thanks for the support
Huggs sue xx

[Maldives]

Thanjs barton.
I couldnt find the cape thread. What is it under? Sue xxxx

[Maldives]

Thanks for the info is it donna. I cant see everybodies names on my phone. Its all blurred ir its my eyesight lol. Thats just old age lol. Are you havibg trouble with numbness too. My lips gone now and my teeth. They are hoping the cape may take the pressure off the nerve being effected. I hope so. Didn't start cape today. Had a bit of a wobbly day start it on friday now.
Look after yourself and thanks for takibg the time to write to me. Sue xx

[Maldives]

Hi funny face. I dont know why i was taken off the cape. I think my onc is still trying the hormone blockers but they just arnt working.
Ive taken letrezole tomoxifen so far. Ive had vec and cape chemo. I had a good run until my first leg op. It seemed to stir up the cancer. I might go back on letrozole after tge cape unless he keeps me on it. The royal marsden is a shot in the dark i think. Fingers crossed. My nails are terrible too. They split right down the finger and my toes.
Take care xxx

[Barton]

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.

Hugs. Barton.x

[Barton]

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.

Hugs. Barton.x

[donns58]

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

[funnyface]

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

[funnyface]

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!