just to wish you a lovely day for Friday for your wedding, sending love and hugs
Carol xxx
Hi Scaryfox
I’m so sorry you have had to join us secondary ladies. But at Hayz said, try not to think too far ahead. I know how terrifying it is, but I saw my onc yesterday and she reminded me as I went into panic mode that she can’t cure me but she does think she can successfully contain the cancer for many years yet. You have many options still open to you - and I’m sure there will be even more before long.
finty xx
Hoping you had a truly memorable day today.
Thinking of you Scaryfox.
Welsh girl
Thank you all so much for your supportive words and wishes… so lovely! Sorry bit of delay replying as I had no internet access! Back online now.
Had results Thurs, cancer secondaries in lots of lymph nodes (very lumpy neck) but doesn’t seem to have reached other organs yet. Can feel the lumps growing daily though, very scary! Surgery not an option apparently and as triple negative, limited options. Have started Xeloda… feeling very strange but then I’m on a load of steroids for the autoimmune thing too… rattling with pills!
Pleased to report we managed to get married, dragged myself to the town hall and chose the shortest vow options as I can barely speak!
Hayz - hope news from the onc was good today?
Best wishes all xx
scaryfox - so sorry to hear the cancer is in so many nodes - I do hope there is a chemo regieme that will help… Congratulations on getting married xxx
Theresa x
Hi, scaryfox, sorry about your dx. I felt the same way after my initial dx in June last year - really scary when the lumps in neck (yes, lots of them, too) felt growing daily. When paclitaxel chemo started, it made a really good effect on it. About 3 courses into it, they’ve all gone!!!
Unfortunately, 1 of them had come back with my recent liver mets diagnosis, measured 14mm on the CT scan. 1 FEC chemo down, it seems to have got a little bit smaller.
I’ve heard a lot good things about Xeloda so hope it works well for you. And congratulations on getting married!
Hi Hayz, hope your appt went OK and your bone scan comes back clear.
Take care xx
Hey scaryfox
Congratulations on getting married!
I have a majorly lumpy neck too! Definately have a new one on the right hand side now to match the one on the left!
I also have a supersized lumpy blob on the right where I had rads…nice!
I had my bone scan today, so get the results on Wednesday…terrified! I’m pretty sure I’ll be joining you in the xeloda club whatever the results…doesn’t being triple negative suck?! All those hormone therapies available & they do diddly squat for us!
Anyway…are your infected nodes just on one side or both? If mine were just on the left then it would be more rads, but I have a nice wee new node just out of the range treated by them last time…oh joy!
Let me know how you get on with the chemo & get the udderly smooth cream slapped on!
Hxxx
Hi Scaryfox, Hayz and all
Congratulations on the wedding Scaryfox - I hope things come under control a bit more for you very soon.
Well, sadly my news was bad too. Have secondaries in bone, lungs, liver and skin - couldn’t quite take it all in and the news certainly flattened my husband. I was suspicious of bad news of course, but not as bad as that.
Plan is to start chemo (Taxol I think - I must check) and Herceptin, hopefully this Friday. Am scared and will have to tell the kids something this evening. Am going to keep it basic but any tips gratefully received - kids are 8 by the way.
So glad these forums are around and we can get some much needed support.
Love to all
SO sorry to hear your news Twinmummy. Don’t know what to say, but just that I am thinking of you…
Telling kids, what a nightmare. I hope someone can advise you. I could do with some advice myself on what to tell my little boy (he’s nearly 3) and it’s hard to know what/how much he understands.
Thank you Hayz, m1yu, theresa, welshgirl and all for your congratulations! Feels very strange to be married, but then everything is strange right now from all these crazy pills not to mention all the new diagnosis’s.
Fingers crossed for you Wed. Hayz…
Dx
Twinmummy I was so sorry to hear your news!
I thought it was just one little lymph node they were checking out. Did you have any other symptoms?
Telling the kids is just plain awful isn’t it? They shouldn’t have to be dealing with this at their age. I have 3 wee ones & have kept my eldest up to date with what’s going on. My 3 & soon to be 6 year old are too young to really understand, but I’m not hiding it from them. They know Mummy has lumpy bits that’ll probably need more chemo and that’s as much as they understand really. My 10 year old knows more about what can happen & how it can spread. He asked lots of questions when I was first diagnosed so is dealing with it all relatively well. He has asked a few times if I’m going to die & I’ve been honest & told him that my cancer can’t be cured & yes, I will most probably die of BC, but hopefully we can find something that’ll work for a long time. He seems quite happy when I tell him about the ladies who’ve been on various chemo’s for 6 years + & that it’s just all about finding something that works for you.
Scaryfox, how are you feeling? Hope the treatment is doing it’s stuff!
Best go & get the kids from school…will let you know how I get on tomorrow! Eek!!
Hxxx
Hi all
Hope you dont mind me joining in I have been following this thread. Twinmummy I was so sorry to hear your news, my girls are 16 and 17 so was a whole different ball game with the delivering news, I wish I knew what to advise you, I’m quite useless when it comes to that. I have also been following Hayz and Scaryfox and wish you well for tomorrow Hayz. I just though I’d let you know that I got a lumpy neck in January, very very fast growing lumps (also triple negative). I only finished chemo and rads a few months earlier so it was quick but Hayz yours was whilst undergoing radio wasnt it? I am going to the Marsden tomorrow to speak to a prof re a new trial they are hoping to set up for us Trip Neg, non gene mutated ladies so I will let you kow if any news comes from that which could help us all. Anyway whilst I was waiting for that appt they put me on Xeloda and I have just finished 3rd cycle. Didnt hold out much hope for it as they said mine is a very slippery little beast and wasnt reacting normally (!!!). Well I had the nodes measured just before starting 1st cycle then they did a scan at end of 2nd cycle. There was marginal shrinkage but nothing to write home about. So I started my 3rd cycle and I have felt massive shrinkage, I prod them daily so I know each and every one of them intimately and they have definately shrunk, some half the size if not more, so theres some good news and hope ladies. Feet have been a bit sore, again I can cope with that if me bumps are going. I am on a high dose 5000mg daily and its very ‘doable’. If I can help with any questions you have I will, there is a lady called Marilyn ‘Xeloda Queen’ on the site and she is great for picking up advice from. Good luck all, I’m thiking of you all. Debs x
Hey Ladies!
Debs…I’m interested to know how your discussion goes re the trial. I’m not allowed to take part in trials, but it’s good to know what’s on the horizon for us TN ladies.
Well…my onc still hasn’t used the secondary word yet…bless her. She said today that she can’t be 100% re the right hand side of my neck with me only being 5 weeks post rads & wants to give it all time to settle down. She will keep a close eye on it weekly though to ensure that there’s no new growth, but she wants me to have a further 4 weeks of rads followed by possibly a week of boosters on my left. Obv if there’s any change then it’ll be chemo, but she’s hoping to hang off on that for as long as possible…as am I!
I was soooo relieved that my Bone Scan has come back clear…left me wondering why I’m in so much pain tho!
…then she re read my CT results & quoted ‘signs of infection in lungs, but not disease’…no wonder I’ve felt pants!! I’ve got a flippin infection in my lungs! Hopefully the antib’s the Dr gave me yesterday will start to take effect…I’d love to be able to walk like a 36 year old again! I’m looking & feeling 90 right now!
Hope everyone is starting to pick up & the treatment is kicking the wee nasties into touch!
Love to All
Hxxx
Hi Hayz, Smiley275, Scaryfox and all
It’s great to be able to talk to you ladies about what is happening and get support.
Scaryfox and Hayz did either of you order the BCC publication Mummy’s Lump to help explain things to your little ones? If not, might be worth ordering as have heard good things about it. Hubby and I spoke to the boys last night - kept it simple saying Mummy’s cancer had come back and needed more treatment, that people were sad for Mummy and more visitors would be around etc to help out. Have had lots of questions from one, not many from the other. All very pertinent and I have answered as honestly as I can. Told them I can’t be cured but that there were lots of different treatments that worked very well for people for a long time etc. It feels good that it is out in the open and they know they can ask absolultely anything and will get an honest answer. It is quite amazing the kinds of things they can come up with. My son who asks the least questions said just to let him know when I was given the final ‘solution treatment.’ Bless…!
Hayz talking of symptoms they were there but I have been feeling so well and didn’t join up the dots. HOwever, the thing that makes me most cross is that 3 weeks before I went to the docs with the swollen node,I went to ask about a spot that had appeared on my chest. It was like an acne spot and I wasn’t too bothered but thought it best to get it checked out. Was sent away with antibiotics which obviously didn’t work but doc did take a swab - still don’t know the results of that… When I went to get the node checked I also pointed out the spot which hadn’t gone away to another doc, who thought it was a cold sore. Of course it was skin mets wasn’t it! Apart from that I was well - I did have the odd twinge of pain in my lower back but I do mean odd twinge - most often after I had been jumping up and down on my mini trampoline to get fit! It seems that that’s an area with a lot of cancer in it. Still find it hard to believe how well I was functioning and feeling when riddled with cancer.
Very pleased that your bone scan came back clear Hayz. I have an appointment with chemo nurse tomorrow and treatment starts Friday.
‘Speak’ again soon. xxxx
Just a quick hi to all, good news about your bone scans Hayz! and to say thanks also to smiley275 for joining the thread - you gave me some hope as I am feeling so awful with these lumps growing and getting harder daily.
Oviously I’ve only been on Xeloda a few days… desperate that it kicks in soon as my other condition (the autoimmune thing) is making my life hell - and probably won’t respond well to treatment until the cancer subsides (if it does!) cos my immune system is going crazy trying to fight everything!
Thanks also for advice about the book - i think they did give it to me first time round when my son was too small - will have to get my hubby to read it to him as the disease has rendered me virtually unable to speak cos my throat muscles are weakened 
Thankfully I can still touch-type, justabout!
And thinking of you all x
love an hugs to all you lovely girlies
Carol xoxox
Hi all
Thought I’d update you on what Prof said yesterday re the trial. Firstly he said stick on the Xeloda, its working and if its not broke dont try and fix it. Made me giggle a bit as Ive never felt so broke in my life! He said one day it may well stop working and thats when we make the move to try something else, but as treatment options are limited he wants to keep them up up his sleeve for future treatments and not break off something thats currently working. He said in the past trip neg ladies without BRCA gene mutations have been trialled on a parp inhibitor only and it proved fairly unsuccessful, however they have now started trialling a parp inhibitor alongside a platimum chemo and its looking promising so far although full results wont be available for a significant period of time. He said to get on the trials is limited in itself, but he did say he hoped something else would be available by Xmas. I kind of lost the thread of what he was saying there as I was still processing something else he had said, seems to take yonks for my brain to process things these days by which time I’m ten minutes behind everyone else! Im seeing my own Onc this afternoon so will ask her and if she doesnt know I will ask her to explain it fully when he writes to her outling our meeting. Im having pain in my kidney area so am going to ask her about that too, Im sure she thinks Im a Dot Cotton though and a complete hypocondriac, but every twinge or mark could be something sinister as you well know only too well Twinmummy. Im so glad you feel better that all is now open and you can speak honestly and openly with your little ones. Like you I cant understand why I have cancer but feel relatively well, nothing seems to make sense with this disease does it? Scaryfox, Im praying you have the same reaction that I have to Xeloda, aim for that 3rd cycle and watch them go! Hopefully that may then help with your autoimmune prob and also your voice and neck muscles. Thinking of you all and thanks to Carol for your lovely last post x
Sorry meant to say has anyone heard from Mand67, I have been hoping and praying that node didnt turn out to be a nasty, fingers crossed for you Mandy if you’re reading this x
Thanks for your reassurance Smiley! I am wondering how everyone’s lumpy necks are? Any news?
I saw onc thurs, he felt lumps and thought they were ‘stable’ - but im not so sure! Thinks i have tolerated Xeloda very well (just finished 1st cycle) - have sore fingers & tiredness but no tummy probs - but needs to do blood test in a week to check I’m ok… he said i have had a 10% lower dose than he would normally prescribe because so ill with the Dermamyositis, if it turns out i am well enough to do a second cycle, he will up the dose to normal level. Then do a scan to see if shrinkage.
Not sure what happens if i can’t do a second cycle, or it doesnt work, did mention another drug but i was a little dippy (chemo brain?) and cant remember.
Hope everyone OK x
Great to hear from you Scaryfox
I’ve been wondering how you’ve been getting on.
Well…I’m still no further forward! Supposed to have rads planning on Tuesday & start on Thursday, but I have 3 new lumps on the right hand side of my neck & 2 on the left.
They’re causing me a heap of discomfort (must be pressing on nerves) & I have a constant stress headache worrying about it all.
I have an apt with my Onc on Tuesday morning, so I’ll see what she says then. I also have the Dental Hospital on Monday…I’m interested to see if they can find any reason for my numb face…or if that’s down to my lumpy neck too!
Will let you know how I go.
Good Luck with the blood tests…hopefully the Xeloda is doing it’s job & you start to see some shrinkage!
Hxxx
New lumps - sorry to hear that, sounds like you are as lumpy as me now! Hope all are zappable. I have the one big one and a few smaller ones on both sides, I’m too afraid to count/ask exactly how many showed up in the scan!
I had a weird numb face after the biopsy - it swelled up and i looked all piggy, the doc said that cos the neck lymph drains the face it can get congested but that it would work out a way of sorting/draining itself again. It did go down, though now is a bit puffy cos of the steroids I’m on.
Do keep me posted - I will also after thursday’s appointment/bloods!
x