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Bone mets - please join in

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Re: Bone mets - please join in

Hallo Macie, I have been on Cape for about 21 months now and it has reduced a 2.5cm hilar lymph node lump to NED and kept a 1cm axillary lump stable- cant have surgery on the latter because I've already had 5 or 6.
I have kept going with minimal SEs because my Oncs have said 1 week on, 1 week off, their research has shown its as effective (Marsden in Sutton) but this may be because of my particular case. It shows that breaks seem to be OK and Oncs wouldn't allow it if it was detrimental. Hope that this helps xx
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Hello Macie, I'm on Cap since about last July.  I had 7 cycles of 4000mg per day, but found I had terrible breathlessness and tiredness that had gradually built up, so Onc gave me a 6 week break (which ended up being 8 weeks, as the 6 weeks started at the end of my rest week, and another week at the end because they didn't know if I wanted to go back on it or not ("stable" result from CT scan following break), so hadn't ordered in tablets for me.  It did me a huge amount of good - and I came back on a slightly lower dose of 3600mg per day, which is working well so far (although tiredness is gradually building again).  Hands and feet no-where near as bad as first 7 cycles, and am now on the last 2 days of tablets on my 10th cycle.  Feel free to join us on the Xeloda/Capecitabine thread on the Treatments & Medical Issues board with any other queries, etc.  Hugs, Barton.x

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Hi Macie,
I am about to start capecitabine next Monday. My onc has told me that..
People who take capecitabine who respond well without SEs do well (obviously!)
People who respond well but get SEs and take a break to let their bodies recover do equally as well
People who get SEs and soldier on through them don't do as well (I presume because it does their overall health no good!)
I'm happy with that I will go with when I start next week!
Hopefully you will take a break, recover from the SEs and the resume.
Good luck
Glo

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Taking all your warm wishes and thoughts with me today ladies 💖💖💖
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Hello again everyone. Lovely sunny day here in Yorkshire.
Glad to see you posting Helen...hope all goes well with your ONC appt today.

Macie i have not had Cape but one of the ladies in my SBCC has been on it for 4 and a half years. She has breaks now and then - the most recent to give her hands a rest.....but I know she has also had an extra week off occasionally for holidays. She also went into a reduced dose for a while and then gradually built it up again....new lady came last time who asked her lots of questions about it

Funnyface thoroughly enjoyed the trip...Graceland was a highlight, but OH spent hours wandering around the naval park in Mobile....there was a nice coffee shop for me to wait for him tho! Like you I was glad to be home but not cos I hadn't enjoyed it.
Hello Clare....lots of info, help and encouragement on here.

Hope Bev is feeling our warm wishes and that her team are on the ball

Good wishes to everyone else with scans, tests, results due....and also for everyone coping with this.
I am seeing ONC tomorrow for 3 monthly consultation, then Zometa infusion
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Morning ladies, a lovely day here in Manchester.
Hope everyone is doing ok, Helen nice to read your posts again....they always bring a smile to my face 🙂
Take care ladies hugs Janette x x
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Good morning lovely ladies. I think we are all still reeling from the shock of our Lulu leaving us. God I hate this disease so much. Our hearts and thoughts are with our wonderful Chris too xxxxxxx

Bev,sending you huge hugs and we are holding your hand and are with you.xxxxx

Tracy,shocked to hear you have been ill. Again we are all here for you and hopefully you'll get cap very soon xxxxx

Lynn,wow! You go girl great holiday xxxx

Now,ladies duelling over Mr Poldark😡 do I have to get my angry eyes out. 😠 we must learn to share. My hubbies will fill in gaps while waiting. All have ehmmmm skills to keep you "amused" while waiting. Not long now for half term chocolate xxxx

Lindyloo,lovely to hear from you xxxxxx a bit of hail and snow today in NE.sunbathing weather yesterday lol,Good old NE.xxxxxx

Belinda,I'll give my onc you "offerings " of his Bob dylan records today haaaa haaaa ( evil laugh) I'm off to see him ad hoc today because he's not doing clinic tomorrow,oh yes he's jetting of on cousins red plane for another holiday!! Now I'm taking bets to see if he actually turns up or remembers he's seeing me today,lol not good odds I think!!

I'm tying to catch up with threads but it's taking a while,as sooo tired at moment ( well I am until I see onc then I'm fighting fit lol)

Clare,welcome to our wonderful ,mad,group of the most fantastic supportive ladies you'll "meet" we are like a huge family always supporting each other through tough and good times.xxxxxx

Huge hugs to everyone,Helen xxxxx
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I'm sorry to hear of Lulu' s passing. This disease never stops breaking our hearts! Saddened, Funnyface

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Lynnq, We did a big tour back in October. We did Indianapolis, Indiana..Albuquerque, New Mexico...Santa Fe New Mexico, ....Carl's Bad Caverns, Bid Bend Park, and the Alamo in Texas, then to New Orleans, Memphis, and Nashville. Hubby drove all if it. We saw a lot of beautiful country, but was glad to get home. My favorites were Carl's Bad Cavern, jeep tour of Big Bend, hot air balloon festival in Albuquerque (500 balloons), and air boat ride in the swamps of New Orleans. I hope you had a good time Lynqq! Funnyface

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Hello ladies I have been on Capecitabine for over a year now 2 weeks on and 1 week off with out a break,but I now feel all the s/e are catching up on me so I am thinking of asking for a break now. Can Ilease have some feed back from anyone that has had a break and for how long,and what effects does it have on the cancer if it is already having quite good results.
I hope everyone's results and treatments go well this week love Macie x x x

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Desi-2 sorry to hear you've not been well on Cape,hopefully they will reduce it and maybe you will tolerate it better.Im on a reduced dose and find se manageable.Hope you're feeling better Helen and not in so much pain from Rads.hope everyone else is doing ok
Take care all
Kaye xxx
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Oops Clare i didnt read your post properly, thought you were asking what NE meant!!
Janette x x
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Hi Lynn, sounds like you had fab time on trip to the US, i would love to do what you have done!!
Hi Clare, welcome to the forum, sorry you have had to join us but we are a friendly bunch and will help you with any questions etc, i don't know what NE means either though but i am sure one of the other ladies will tell you.
Hugs Janette x x
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Hi,

 

I am new to this group and NE caught my eye. Im going through the threads trying to make sense of what this means for me. I have only just had diagnosis and no idea what to expect but such an active forum looks positive. Guess this is a hello from me..

 

Clare

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So sorry to hear about Lulu.. Heartfelt condolensces to her family and friends.xx

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Sorry to hear you have been poorly Desi, hope you get your strength back soon and can re start Cape. Take Care. X
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Hi lynnq. The tiny mets didn't show on the ct scan. That's why they thought I could have stereotactic radiotherapy but they did show on the MRI so have to go with that. Onc says he has several pts who have had wbr 4 and 5 years ago and they are still doing fine! I'll go with that! Lots of love Sheila. Xx

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So sorry to hear of Lulu 😪 . Just thought I'd check in it's been a while. I've read some of you have been struggling and I've also been in the hospice for a few weeks recovering from just one round of Cape! Apparently 3% of people can't tolerate it and it looks like I may be one of them but plan is to try on reduced dose when I'm strong enough again. Hope you're feeling much stronger now Helen xxxx
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So very sad about lulu condolences to her family xxx
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Hi again Roxy, glad you're feeling okay today.....but you obviously need to rest.
Hope you don't mind me asking, did they find the tiny mets when you had your mri. I read so many posts yesterday may have got confused .
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Hello JulieD & funnyface. We were in Atlanta, Chattanooga, nashville, Memphis, new orleans & Savannah,. Hired a car and OH did all of the driving. Did Graceland and Grand ole Oprey and had St patrick's day in Savannah - they really do celebrate it there...OH is Irish so loved it all.
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So very sad to hear about Lulu, i 'knew' her on here for a short time and she was such a support to many. May i add my condolances to her family.
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Hi lynnq, had my first wbr tx yesterday. Apparently a have some tiny mets as well as the ones pressing on the facial nerve so could not have stereotactic tx.

Anyway, I feel OK today. Had a nose bleed last night and a slight headache but nothing too bad...,.,...yet. Very tired though but have been for a while really.

Hope you had a lovely holiday.

Lots of love Sheila. Xxx

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I am so sorry to hear about Lulu and send my heartfelt condolences to her family and friends. She had been a member on here for a long time and, when the forum was in its previous form, her posts were seen more often and read by many more ladies on here. She will be sadly missed.
Take care lovely ladies and be strong.
Nicky x
Ps thank you Belinda for flagging this up as well on a separate thread.

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I'm so sorry to hear this dreadful news about Lulu. She was a wonderful ,supportive ,lovely lady who was a great friend to many on here. She will be so sadly missed by us all.
I send all my love to her family at this extremely sad time.
RIP lovely lady xxxxxxxxx Helen xxxxxxxx
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Lynnq, Wondering where you were in USA? I live in Pennsylvania. Funnyface

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I have passed on the condolenceslove and support on the BCC site to Lulu's sister and family. As you can imagine there have been lots and lots of people expressing thier sadness and telling how much of a support and inspiration Lulu was. I hope that the outpouring of love will be of some comfort to her family

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So sad to hear about Lulu. Only 'talked' with her a few times but it is obvious she was well loved. Heartfelt condolences to her family and friends x
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Hi Julie, thanks for letting us know about Lulu.would you pass on my condolences to her family? She was a very brave strong lady. R.I.P Lulu. Xx

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Oh Julie i am so sad to read about Lulu, i wasn't very familiar with her as i have only been posting on here since April last year.
Please give her family my love, my thoughts are with them.
Hugs Janette x x
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So sorry to read this news about Lulu Julie, please pass on our sincere condolences to Lulu's family and friends from all of us here at BCC, she will be sadly missed and has been a valuable member here for a long time

Lucy BCC

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Lynnq, good to have you back and pleased to hear you had a good holiday. Don't overdo the washing, it can wait! Where did you go, what did you do? Glad you enjoyed it and had energy.

 

I'm afraid I have sad news about Lulu. She died this afernoon. She was at home and had her family around her, she was comfortable and peaceful. She will be missed by many.

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Baggy I colour in his chest! Omg I had my ovaries removed years ago but think they returned last night while watching him unlace that dress!! Lol
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Sorry Chocolates but I missed your reply at the weekend. Yearly scans show just how well you're doing on this treatment - it's fab news x
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Hello everyone. Back from our holiday in the deep south of the USA....had a good time, felt really well most of the time, hardly any aches .... I wonder if adrenaline keeps me going when away....been achey and tired since I got home but expect jetlag and the overload of laundry have contributed to that....refused to wash clothes on hols....told OH to take sufficient with him.

Just done a quick read through all of the posts since I was away.

Helen...what a time you have had....glad to hear that you're home from hosp and that they have finally discovered the cause of your pain....hope the rads blast it away quickly.
Bev....so sorry to hear your news - hope you had a Good weekend away and that your treatment plan can be sorted soon
Sheila. Hope you're doing okay as well. Any results from the MRI?
Marie welcome ... These posts keep me going and I am sure you have discovered how helpful they are already.
So sorry to hear about Chris & Lulu...my thoughts are with them.
Stresshead - I have had chest pains on Letrozole...ended up in A&E one time, but they found nothing untoward and put it down to really bad reflux.
I have my zometa infusion on Thursday and also my 3 monthly consultation with the onc....i have been stable now for almost two years. Like Macie and Helen44 I feel a little guilty because so many of you have had real problems just lately. Hope I can inspire someone.
To anyone else who I have not mentioned hope you're all well and warm wishes on the way. Anyone waiting for results, scans etc. hope the waiting isn't too bad.
Take care xx
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Ye olde Ross Poldark also has his own website,
http://robin-ellis.net/
I see a gap in the market for a "Romantic Cornwall with Poldark" colouring book.
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Do any of you know that the judge in last night's Poldark was the original Ross Poldark? I didn't know but hubby had seen it somewhere. Xxx

 

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Belinda, the colouring book looks lovely. Thanks for the tip - I've just ordered that and the secret garden for my daughter's birthday.
Stillhere, your mantra makes more sense than my 'not snuffed it yet'!
Oh Helen, poogate sounds horrible, I'm sure BG will help you to find some positives from it though. Hope you're feeling a bit better today and on your way to becoming pain free. Can't wait for your next instalment of your hospital story!
Hoping everyone is having a good day
LD x
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He's mine, mine all mine! Pistols at dawn again but I think we all been shoved off the perch by a certain auburn -haired beauty last night, nooooooh!! I'm only 3 times her age.......
To everyone having a hard time, please be strong with my mantra...where there is life, there is hope...lots of best wishes. Xxxx
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Oh,Belinda,I've just had a look at book. Oh sooooo pretty. That may be in basket today hee hee xxxxx hugs,Helen xxxx
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I am glad to say that Ross is definitely mine, I will let Chocolates have George Warleggen ! Marie

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Good grief, Helen! That sounds absolutely disgusting (poogate, I mean). Yeugh!!! Other ladies seem to have been nice, though. Glad someone was treating you as human, not like your Onc! Glad you are home safe. Take everything easy. Chocolates and Marie, how did the pistols at dawn go? Who won Ross? Good luck to anyone having tests, results, treatments, etc. Hugs. Barton.x

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Oh my goodness Helen, sounds more like a Bear G challenge going to the hospital bathroom.
Has anyone treated you to the new Johanna Basford "Enchanted Forest"? If not do treat yourself. 🙂
I have always found pain gets worse but then gets better after rads so hope you start to feel the benefits soon.
Good Luck to everyone waiting for treatment to start, results, appointments this week. X
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Good morning lovely ladies,who keep me sane and positive. I've missed our chat so much xxxxxxx you are all fantastic xxxx

Pain a bit rough at moment after rads. I opted for a trial of one off high dose instead of 5 smaller doses!
Nurses at hospital great and friendly even scary one but communication dreadful between staff. Sometimes waiting two hours for pain meds. I did take my own stash in and didn't tell them. Macmillians nurse said that was okay as I knew how to control my sickness symptoms .

Well now for poo gate story.💩💩💩 Met two lovely ladies on ward,one got me through some crying under blankets times and was a blessing( we were all teachers and TAs too!!!)
Well,in night you tend to be a bit of a zombie trailing to bathroom. So the younger teacher and I had been doing this and also had shower in morning. We both never noticed "Marks and sticky floor". Well older teacher came back from rads ( she went down very early) and said please tell me you haven't used bathroom or walked through "marks" on floor. We both said yes and showered! Well apparently marks were poo trailed out over ward floor on odd ladies slippers and Zimmer frame and poo was all over floor in shower room/loo. Matched colour of floor in bathroom so apart from sticky didn't notice!!Well you can imagine our faces. We were hygiene gelling our feet,rubbing it on slipper bottoms. Then odd old woman came and sat on my clean freshly made bed and started fiddling with my colouring pens !💩💩💩💩 yikes. So I started to gel wash my pens. Then nurse came in and we told her about "mess" bless her she changed my bed again and moved odd woman to cubicle. The strange thing if you went to loo she'd get out of bed bang on door and say get out that's my loo I have diarrhoea . Nurses even showed her other loos to use. So let's say she wasn't a miss when they moved her and air was fresher. Loo and floor eventually got cleaned at 11:00!
So glad to be home.

Well in off for wig today,yikes !hope they still have Elsa wigs in lol. Hair is coming out in bunches now. I'm hanging on to hope I'm the 25% that keeps it but I think I'm kidding myself oh well it's the last time I'll ever have hair again 😭.💇💇
I'll catch up later. Massive hugs to the most fantastic bunch of ladies I've ever met xxxxxxxx Helen xxxxxx

Chocolate,oh a bed bath from Mr Poldark😻😻 hee heee.
Ladies ,I hope my hubbies have been behaving themselves while I've been gone and you have kept them busy !!🙈🙉🙊
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Helen, Glad you're home! Gosh what a time you've had. I hope you can find a new oncologist after this mess. You deserve better treatment! Rest up and get some strength back. Gentle Hugs! Funnyface

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Hello ladies, lovely bright day here. I hope the sun is shining on Bev in Tenby. Helen, hope the pain is beginning to settle. I know you - your absence means you are struggling. Keep popping the meds - it will get better shortly. I suppose depending on the position it may also up set your tummy. Really hope you feel better quickly xxx
My last weekend before we break up for Easter hols. I'm really tired - desperate to finish. I need to recharge my batteries and sleep, sleep and more sleep. Good luck all for the coming week. Sheila fingers crossed things happen quickly this week. Nicky - how lovely to get away. You are an inspiration to us all. Helen hope we'll have you back this week to keep us in check.
Marie - I have no words - it looks like there is only one way to settle this. I'll meet you at the top of the hill at dawn!!!

Huge hugs,
Hxxx
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Hello,

So sorry for all having a bad time, you are in my thoughts and prayers. Good luck to all getting results this week.

However, I must say that Ross Poldark is mine, I have loved him since I was 15 . I will only share the books, they really are a good read.

Take care, I will have my angry eyes polished and ready if needed.

Love Marie.

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Hi everyone

Just wanted to wish you all the best with treatments, thinking of us all with this horrible disease, and especially Chris, Lulu, Bev, Sheila & Helen at this time.

Pleased you had a good break away in Italy Nicky08 - catch up with you very soon.

Big ((((hugs)))) all round, love Helen xx

 

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Morning Catlady sorry to hear you have not been well. Not been on here for awhile just trying to get on with life. Still working at moment. I am still on same treatment e/e. Due to have 6 months scans of chest abdomin etc. Is there many people on the e/e now. There was a thread for it can't seem to find it now. Nice weather in the North East today might go for a walk after lunch. Reading through the messages alot of people seem to be having a bad time of it at the moment. Cyber hugs to you all. Linda

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Hi Helen so glad to hear you are home and despite everything you still sound up beat. I had radiotherapy  at the start of my treatment it was a bit painful at first but since then it is a miracle  cure, no pain for 18 mths now. Are you able to change your onc? I had a registrar for a while she was nice but when I told her I was in pain she asked how long I said a few weeks and she said she wouldn't do anything unless I had been in pain for a few months. I wondered if she would like to be in pain for months!  Anyway my brilliant breast care nurse sorted it out for me, but it does make you wonder!