Scaryfox
I’m so sorry to hear your news.
Hopefully your meds will start to get your pain under control & you can get on with fighting this crap!
We seem very similar…I too have an autoimmune disease ( have had it for 11 years) & am Triple Negative.
I have unfortunately developed more lumpy bits recently around my collar bone at both sides & am experiencing some awful back & chest pains…kind of desperate to start chemo now to hopefully start to get it all under control!
I had my CT on Friday & get my results on Tuesday…I’ll be thinking of you having your scan & have everything crossed that we both get the best results possible!
Hugs
Hxxxj
Thanks both for your kind words.
Hayz, yes we do seem in a similar boat at the moment. Sorry to hear you’re in pain as well. Do keep me posted.
Fingers crossed and hugs from this end too xxx
Hello ladies…I’m so sorry to hear your news but just wanted to let you know Capecitabine (Xeloda) has been a terrific chemo for me. It has held my bone mets inactive for over 2 years now and I have so little side effects I just don’t feel I’m on chemo. So if you do start this treatment I hope it works VERY well for you too. xx
Thanks Belinda,
Is Capecitabine a relatively new treatment? I hadn’t even heard of it until recently. But I guess maybe not if you’ve been on it 2 years at least… glad it’s working out for you anyway x
Thanks Belinda
As you know I’ve been following the Capecitabine thread since my first lump appeared a while back and it has left me feeling very positive about the results that can be achieved with this chemo.
I hope I can have the same success as the wonderful ladies who post over there…especially for as long as the Xeloda Queen has had!!
…and I will have to invest in Udderly Smooth Cream & crocs if my onc starts me on it this week! Lol
Hxxx
Hi again H…I meet up with the fabulous Xeloda Queen every summer, at the seaside.
x
Hi scaryfox, I don’t know how long it’s been available but one of the ladies on the Secondaries forum is known as the Xeloda (Capecitabine) Queen as she has been on this treatment for 6 years…xx
Hey
I had the lymphoedema clinic today & my BCN shouted me in for a chat…I panicked a bit if I’m honest! She asked how I was & the usual pleasantries before saying she had my CT results!
Says obv my onc has to put her clinical spin on it in the morning & she’ll have a poke around at my neck, but the CT showed that my head, abdo & skeleton are clear, raised node on the left looks reactive & the diseased ones on the right have decreased in size & density!! She thinks that my partially numb face is due to radiotherapy possibly damaging some nerves (small price to pay!)…all in all it’s looking positive! At last! I’ve not had any positive news since diagnosis! She also thinks that the extra lumpy bits I’m feeling on my right side is just good tissue reacting to rads.
Will still freak out when I’m waiting to see my onc in the morning, but I’m feeling soooo excited just now! I’m keeping everything crossed that my onc is so upbeat about the results!!
Fingers crossed you get good results too scaryfox! Good Luck for your scan tomorrow!
Hxx
Hayz - that is such brilliant news…
so pleased for you - i hope the onc is as positive tomorrow…
Theresa x
That is GREAT news H! So pleased for you…xx
Good news, v pleased for you… keep us posted… I will too x
Ok…so as I suspected, my Onc put her sobering perspective on things this morning!
She’s not particularly convinced re the wee left hand node & wants to quizz the CT Guru’s at tomorrow mornings meeting! So I need to sit tight & wait for a phone call tomorrow afternoon!..more waiting!!
If it looks questionable then I’ll have a Bone Scan & further radiotherapy. Fingers crossed my Bone Scan will be clear…rads I can cope with!
Hope your scan goes well today scaryfox
Hxxx
Sorry to here that Hayz, more waiting
here are some hugs and stuff
Love Maria
Oh Hayz what a rollercoaster of a time you’re having…Good Luck…xx
Hi Scaryfox, Hayz and all
Really sorry to hear your news Scaryfox and ending up in hosp to boot with the autoimmune disease - well you are really going through it right now. Keeping fingers crossed for you Hayz that the news is good.
Its still a waiting game for me. Had biopsy on node last Tuesday and they also took sample of another odd spot that had appeared in middle of chest. Had bone scan today and boy did that take me back to first time around when it took four goes to get a decent vein! The CT scan is this Thursday - had blood taken too - then get all results next Monday.Really wish this waiting game was over. On the whole I feel very well and am clinging to that but really can’t see what this lump could be if its not cancerous.
Will let you know…
Take care all xx
Thanks guys
Had my CT scan today, it was surreal. Wierd injection of stuff that made me feel like i was peeing - luckily they warned me first! And a crazy recorded american woman telling me when to breathe - like being in a sci-fi movie.
Apparently I should get the results thursday eve. In the meantime still stuck in hospital, on loads of steroids, having real trouble swallowing and speaking cos of progressive muscle weakness (dermatomyosis).
Can’t beleive just a few weeks ago i was bumbling around like a normal person - my poor little boy is so confused cos his mum can’t play anymore.
Really hoping you guys have better luck! Good luck for Thurs Twinmummy, and your results Hayz, take care all x
LOL ScaryFox…gotta love the whole body hot flush & the sensation that you’ve wee’d yourself that only a CT scan can provide…could live without the horrible metalic taste you get tho!!
I’m so sorry to hear that you’re still stuck in Hospital! It’s just so frustrating…especially when you have kids at home. I have 3 wee ones (3, 5 & 10) & always hate when I have to spend time as an inpatient…I think it makes the time just drag & you can’t relax when you’d rather be with them…and when you think of the mess the house’ll be in when you get home! LOL
I’ve still got everything crossed for you & will be thinking about you tomorrow…lets hope that it’s just one wee rogue node & it can be zapped to death with some rads!
TwinMummy, Good Luck for your results on Monday! I’m just gonna keep everything possible crossed for the three of us!
I got a call from my BCN today…I’m glad I questioned my CT results 'cause when the wee CT consultant went back & looked at my scan he saw the wee left node! Missed it first time it would seem…OMG! What else do they miss??
Anyway, I have a Bone Scan on Monday (so I can be fully re-staged)& get the results on Wednesday. Plan is rads if the scan is clear & obv chemo if (God Forbid) any bone mets are diagnosed!
Here’s to fantastic scan results & some Good News all round!
Hxx
Thanks Hayz,
I didn’t get the metallic taste - though they did mention it. But I hate all this poking and prodding, I prefer the natural approach! Unfortunately not going to be enough now I have secondaries. They seem to think a lot of my lymph nodes in neck and chest are affected, just not sure if it’s escaped anywhere else. But defo. stage 4. Will find out more this afternoon.
3 little ones! Hats off, I’m in permanent awe of anyone who manages more than one… mine is a handful! Luckily husband to be (we have planned a very quickie emergency wedding for Friday if I can still walk) is a very good ‘hands on’ Dad. It is breaking my heart that I will have to leave them both and not see my little one grow up 
That is worrying they missed your left node, hope they make up their minds! And that the results are as good as they can be, and for you too Twinmummy!
XXX
PS - rads in neck - does this affect ability to eat? Worried as i already have swallowing probs from the dermamyositis…
Dear Scaryfox,
Having read your story so far I just wanted to send my support and wish you so many best wishes for your wedding on Friday. I’m sure it will be a very very special day for you and your little family.Really hope you will be strong enough on the day and for all the following days…
Big hugs to you from Welsh girl xx
Hey Scaryfox
Don’t worry if you have to have rads to the nodes in your neck, They have you lying with your head as far to the side as you can comfortably lie so as to avoid your windpipe.
In the 5 weeks of rads I only ever had a scratchy throat a couple of times, but nothing even vauguely painful.
I’m sending as many positive vibes/thoughts & have my fingers & toes crossed that they don’t find any more wee nasties lurking!
I know it’s easier said than done, but try not to think too far ahead. They thought there were more of my nodes infected & possibly other secondaries still to be spotted, but my initial scan came back with only 2 nodes next to each other & it appears that rads worked on them. Take things one step at a time…hopefully it’ll be the odd node…rads…then all gone! You’re not going anywhere yet…even if the results aren’t what you’re hoping for Xeloda has some fantastic results (have you read the thread?). It’s scary being triple negative, but I’m sure we can have the same success on cabecitabine if/when we need it!
I now have the wee node on the other side (& I’m sure a new one on the right…(will quiz my onc on Monday)…I’m really not trusting my CT results…and I’m just praying that my bone scan comes back clear next week!
Let me know how you get on later today…are you on facebook? There are a load of us on there…I find it fab for support too!
Good Luck & have a fantastic Wedding…how exciting! :o)
Hxx