Bone mets - please join in

[Barton]

Joining everyone here to say how sad I am that Helen has passed on (hopefully to somewhere better, without pain and worry). Devastating news. She was so helpful and funny, and cheerful, even when she herself was going through hard times. She helped me a great deal, too, when I was first diagnosed with mets. All my best wishes to her family, and to you, too, Chocolates, as you were obviously so close to her. She will indeed be very much missed. Huge Hugs, Barton.x RIP Helen.

[rosie53]

Orse, that's great news!!! I have denosumab injections, can't say I have any side effects, I use to have it in my arm but started to get a lot of pain in that arm which led to something called a rotator cuff injury it was so painful and I had to have a cortisone injection which has done the trick and it's fine now but I always have my denosumab in my stomach now.

Hugs to all Janette xxxxxxx 

[Chocolates]

Orse, that is good news, thank you so much for sharing.  Mets shrinking is really good - fingers crossed it continues.  I'm on denusomab, it's an injection given in the arm or tummy.  I have mine in my tummy and to be honest not many se's, slight bone ache two to three days after but nothing to worry about.  Some people who have it in the arm complain about it hurting and pain after for a few days so if you get an option opt for the tummy.

good luck to anyone else receiving treatment/scans/ results this week.  

Hxx

[helen44]

Oh Helen you will be sadly missed by all-family, friends and cyber friends. May you rest in peace, free from pain and this horrible disease. I will raise a glass tonight to you and my sincere condolences go to all who loved you. Love Helen xx

[Orse1970]

Ladies

Tiny bit of good news... Saw my oncologist today, after three lots of carbo/gem my mets have shrunk.. Can even see the reduction in the skin mets - thickness in skin shows the mets on a ct.. There is a shadow on my lung 😞 but has been reported as a infection, onc says that's a wait and seen area.. I also have something showing on my pelvic bone and she is giving me injections of densumab (sp?).. Is anyone on this? Can anyone tell me what the se's are???

I also mentioned that I was concerned about my options in future as Eribulin has been taken off the cdf list and she told me as of last week it is BACK on the list... Good news for all..
Thinking of everyone who is having a bad time at the moment...
C xxxx

[Lynnq]

so so sad to hear about Helen.  She was a lovely lady, and as many others have also said she was very supportive to me when I first was diagnosed.

Love and thoughts for her family, and also for you Chocolates...it must have been difficult for you.

[stresshead]

Oh no..the news we were all dreading. I dont know what to say......i can only echo everyone else's thoughts and comments. Helen helped me so much right from the start of my secondary diagnosis. Even though most of us are just names to each other it is like losing a loved one. Helen you were an inspiration to us all. God bless.

Chocs..thank you for keeping us informed....so sorry for your loss.x

[Tournesol]

So sorry to hear about Helen. Thinking of her family and friends.

Rest in peace Helen.

Tournesol x

[pam01]

I would like to add my tribute to Helen who was a wonderfully supportive member of the forum.....There was long time last year when I came to the forum each morning anticipating Helens first post of the morning saying "good morning ladies!" with real pleasure  and missed it terribly when she managed to get away on her trip to America (although I was clearly delighted she managed to go on her dream holiday and really enjoyed it). I will really miss looking in to read Helens warm posts. Deepest sympathies to Helens closest friends and her familyxx

[funnyface]

Oh no! I just read about Helen. I'm so sorry that her effort to try taxol failed. She gave it her all. She seemed to be quite a character. I enjoyed her posts. RIP dear Helen. FF

[funnyface]

We got you Rosie, Orse and Still here!

[LemonDrizzle]

The news we've all been dreading about such a special lady who always shared her words of wisdom as well as her lovely sense of humour. My thoughts are with her family and I hope they can see how well loved she was here.
Thank Chocs for sharing this awful news - sending a hug your way
LD x

[Chocolates]

Ladies I've just started a thread in the dedications and remembering others section if anyone would like to add to it xx

[madge1]

I have just seen the very sad news regarding Helen (catlady). She was a true inspiration and helped me so much when I was first diagnosed with my double whammy!! Even though I haven't posted for a long time I always read the posts daily and she lifted everyone's spirits!!
May she rest in peace and sending love and condolences to her family.
Julie xx

[Orse1970]

I've just seen the sad news about Helen,,, she helped me a lot when I was first diagnosed with mets.... I am thinking of her and her family...,.. This disease is so cruel... Hugs to everyone who knew and will miss her.. xxx

[belinda]

Dear all, there are some of us in the cyber cafe, raising a glass to our dear Helen and lighting a candle, do join us. X

[Jam]

Please let the family know what a special person Helen was to us all Chocs. We must keep helping each other in her memory. Let's have lots of smiley faces please as we think about Helen 🌞🌞🌞xJanetx (I hope I don't offend anyone with the smiles but I think there is reason to smile when we remember her) x

[JulieD]

Thank you Chocolates for passing on such sad news, I know how hard it is so send you lots of love and a big hug.

Helen will indeed be missed. Her cheerfulness and sense of fun was infectious. My thoughts are with her family and friends.

Rest peacefully Helen. Fly high and free xx

[nicky08]

Oh no, the news I think we were all dreading to hear, but had hoped that Helen's amazing resilience and fighting spirit would once again pull her through. Helen was such a star on here as everyone has said and will be so sorely missed. As one of the early morning users on here I always looked forward to her happy breakfast time posts and will really miss her and them. The only comforting thought is that she is free of pain now and shining down on us. My thoughts go out to her family and friends. Sleep well lovely 2catlady 😿😿
Nicky xx

[Jo_BCC]

Thank you Chocolates for passing on the sad news about Helen.  Would you be so kind as to pass on to her family and friends our sincere condolences from everyone here at BCC.  Helen was a well liked and valued forum user for some time and will, I am sure be missed by many.

Our thoughts are with you all tonight.  Take care,

Jo, Moderator

[edwina64]

So sad to hear the news about Helen....she had a positive impact for all of us on this forum and I can't  quite  believe she has left us so soon. My heart goes out to her family they should be so proud of her. Free from pain and worry now god bless you xxx

[vercors]

I don't contribute very often to this thread but I get email alerts and read every single message. 

Today, I need to come and add my voice to the tributes to Helen. Indeed, for the many years I have been on this forum, she has always been a great support at the time of my secondary diagnosis when I was trying to get my head around this horrible disease. 

Helen, we will miss you greatly. Fly free, painfree away from this wreched disease. xxx 

S. 

[Marirose]

What a shock to read Chocolates post I burst into tears Helen was really loved she was an inspiration to many of us here she was always there with her knowledge to help others it will seem very strange to visit this site without her being here.

Helen I am glad you are no longer in pain may you rest in peace and condolences to all her family and friends and thankyou Chocolates for being there for Helen and Forum friends xxx

[belinda]

Oh Chocs, I was amazed at how many times Helen pulled herself back from the brink. She had such a love of life, such spirit which shone through all her posts. My sincere condolences to all who loved Helen. Gone much too soon but your light shone brightly Helen. X

[rosie53]

Oh nooooo!!! This is the the worst news, I have been praying our truly wonderful Helen would be able to find the strength to get through this latest set back.

I am truly devastated for her and her family, she was an inspiration to us all on the forum always there to lend her support and cheer us up with her cheeky humour, i feel privileged to have been part of her cyber family.

Helen god may you rest in peace 😇

Off to join Chocolates sing Let it Go 

Hugs to all on this very sad day

Janette xxxxxxx 

[Sarn123]

Hi chocs I am so terribly sad to hear the news of Helen as you mentioned when I came on to forum Helen was the first one to welcome me and answer any questions I asked with her wise words. She will be greatly missed by all on here, my thoughts are with her family and everyone who knew her. Sleep in peace helen🙏🏻😢

[Chocolates]

Ladies, it is with an extremely heavy heart that I have to tell you that our beautiful Helen gained her wings this afternoon. Naturally her family are devastated as am I. Helen was always there for us all, when I first arrived on the forum, scared and alone Helen was instantly there. She knew what to say, she knew how to comfort, pick me up and never let me feel that I was alone. Helen was amazing, she was one in a million who loved us all and I know felt our love and support. Her sense of humour was witty and naughty at times, you only have to visit the cyber cafe which she set up to see how she spurred us on to try and live a little of our lives without the big c interfering. We laughed, we cried but ultimately Helen was at the centre, determined that we would never be alone or face any challenges without her holding our hands.
The tables have turned these last few weeks, it's been a privilege to hold Helens hand, to be there when she needed us, to offer those words of support which I know would be an automatic response from her. However, in real terms that support will no longer be there from Helen but I know that she will be with us in spirit.
Ladies, this is still too raw but in time I will come to realise that Helen is now free from pain and suffering and that will be a comfort. In the meantime I'm going to go and play Let it Go loudly and sing along for Helen. I know that that is what she would have wanted.

Fly free Helen, a new star will shine brightly tonight xxxx

[Stillhere]

I have just had a CT scan but no Onc appointment for 3 weeks....can I throw my extra large styrofoam out to Helen? Climb on gently, lovely lady xxxxx

[helen44]

Just managed to log on forum whilst in France and I am so sorry to hear Helen is poorly again. I do hope and pray that Taxol works for you Helen. Sending big hugs to you & everyone else-I notice we have lots of newbies. Love Helen x x

[Orse1970]

Can I attach my styrofoam as well pls???? Ct scan done - results.tomorrow xx

[Jam]

I'm attaching my styrofoam. Good luck to us all x

[Rose_Red]

FF you made me smile. I can't swim so you will know which one I am - the one bobbing with the arm bands and the rubber ring.grab me quick and tie me to Belinda's large styrofoam life jacket. Rosie x

[belinda]

Got a plan, if we rope all the styrofoam together we shall have the equivalent of a large life jacket. Hang on in there all. X

[funnyface]

Oh my! I so hate knowing that so many of us are having difficult scary times. We all do so well when it's smooth sailing and seem to get on with our lives, but when that boat gets rocked and we get thrown overboard, those life jackets seem sparse. I feel like I didn't get one of the life jackets this time. I got a chunk of a styrofoam cooler to stay afloat, I've been trying to paddle and kick my way back to the boat. Maybe my next scan in October will show me the styrofoam cooler was good enough to get me there. Meanwhile I'm waving to those of you in the boat and if you're out here bobbing around with me, kick on over for a hug! Helen, sending you big hugs!!! FF

[Rose_Red]

Thank you to everyone who replied re the e/e drugs. Marirose I have 4 more cycles of Eribulin and further CT scan before Onc decides next plan. I will let you know if/when I go on this combo.
Good luck to all awaiting results and treatments this week I read the posts everyday and take great inspiration from you all. I realise that it is okay to have a downer, to rant against this evil disease, to be anxious, scared, angry but most of all I appreciate the good days. Well off to see Onc again today to arrange chemo for tomorrow. Bye for now x

[Barton]

Adding my best wishes for Helen to everyone elses!  Hoping the Taxol works, Helen, and that you are well enough on Wednesday for your next dose.  Hoping it treats you gently!  Hugs (gentle ones), Barton.x.

[nicky08]

Oh dear ladies, I think we all need to hold each other's hands right now, a difficult time for so many of us especially our lovely Helen whose hand I am holding extra gently.
So many friends and families don't understand not only are we dealing with the side effects of the treatments we are constantly on but also the worries and anxieties we have about every little thing, even if in the end it's not related to this blasted disease.
Keep strong, try to live for the day as edwina has said even though that may seem impossible at times.
Hugs and hand holding to all.
Nicky x

[edwina64]

Hi Jam and everyone...still gave a numb lip and chin and waiting for a scan date. Feeling very low at the moment as it could be very serious and not knowing is a bit of a nightmare! Keep prodding my lip and chin every 5 mins to see if it had improved...mad! Tooth still niggiling . See onc next Tues to get cape for the 1st time it feels like I am waiting forever.  I have lots of questions but not sure I want the answers! Anyway  I am sure you all understand ,oh says we should try to live for today as worrying about tomorrow spoils what we have now, its true but so difficult....hope everyone is doing ok good news please ladies that helps alot x

[Jam]

Love and hugs to Helen. Edwina how's your toothache? Have you had any help or reassurance yet? Good luck everyone else xx

[Tournesol]

Thanks Chocolates for the update on Helen. Really hope the taxol helps and that she's being made as comfortable as possible.
All the best to everyone facing results or having a hard time at the moment.

Tournesol x

[Marirose]

Thankyou Chocolates for the information regarding Helen lets hope the Taxol works for her. 

Sending Helen lots and lots of best wishes via cyber vibes 

C good luck with your results on Wednesday I went through what you are going through last week I was convinced they would change my treatment but every thing was stable so I hope it is good news for you. My skin mets vary from being very red and angry to settleing down to reducing in size wish they would go away but no chance of that I have had them 18 month now apparently yhey don't show on the scans so someone said in another thread. Again good luck xxx

Rosie your e/e drugs are everolimus and exemestane I have had 14 courses and still stable but it is hard at the start let us know if you go on this treatment xxx

Love to everyone else xxx

[LemonDrizzle]

Good evening everyone from a very rainy Lake District - every time we've been up here for a week or more this year it's rained lots so don't book holidays in the north if I'm away!
Thinking of you Helen as always and praying the taxol works x
Good luck to anyone having scans or receiving treatment/results this week
LD x

[belinda]

Thinking of Helen. XXX

[rosie53]

Thank you Chocolates, keeping everything crossed for our lovely Helen.

Hugs Janette xxxxxxx 

[Orse1970]

Hi Stresshead

Thanks for the reply..

I think I go thru periods of coping with this disease and times when it just totally overwhelms me.. Right now I am on a real downer... I noticed a real improvement in my skin mets bet cycles 2-3 but since I have had my 3rd cycle they don't appear to have changed and tbh sometimes I think they may have got worse - doesn't help that my little one accidentally elbowed me in that area and I think I have a bruise (cud be more skin mets, but is more purple than the red of the Mets - I'm hoping at least)..

Have you spoken to your oncologist about your concerns re treatment?? I wud have thought that if not working by now they wud have altered your Chemo? Did you get a second opinion? Sorry your having such a worrying time, it's the not knowing that really gets to you..

I really worry as I'm tnbc as well as being allergic to tax so know my options are really limited..

Let me know how your getting on..
(((((Big hugs))))))

Good luck to everyone else on here that is facing tests/treatment/results
Keeping my fingers x'd for Helen..
C xxxxx

[Chocolates]

Ladies,

Helen is still with us but very very poorly still. She needs all our positive thoughts and vibes. If she's up to it then she'll have another taxol on Wednesday. She sends all her love to everyone and thanks you all for your continued support.

If I hear anymore I'll update you as I get news

Hxxx

[Janet_BCC]

Hi Rose_Red

I've attached a link to a thread which may be about the two drugs you mentioned:

http://forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/everolimus-and-exemestane/m-p/8...

I hope this helps!

Best wishes

Janet

BCC Moderator

[Rose_Red]

Thinking of Helen and others having a bad time at the moment.
I had my CT scan last Wednesday following my 6th cycle of Eribulin (day 1 dose only ar 20% reduction) and the Onc confirmed today everything stable - what a relief. He has agreed to a further 4 cycles and then another scan and review. He mentioned the possibility of going on to two drugs both beginning with E in the future. I remember seeing a post on here where somebody mentioned being on e/e and was wondering if they could tell me what the drugs are called. My OH was taking notes but we couldn't work out afterwards what the Onc had said!!! Rosie.

[sallyhennypenny]

Just wanted to add, I'm thinking of Helen too, hope taxol works xxx

[sallyhennypenny]

Hi easytiger, sorry I've not replied sooner, I haven't logged in for a few days.  I found that immediately after the 5 radiotherapy blasts, I got slightly worse - but I was told to expect it to do that - and then within 2-3 weeks I was noticing an improvement,  this continued over the next few months.  Now, a year later, I get the occasional ache or throb in that area, but it's almost unnoticeable.  The scans I had later on also showed a "healing response" so they tell me.

I really hope your Mum finds it just as good.  Those 5 days were long and scarey (I wasn't allowed to move at all at first, I don't know if your Mum had the same experience).  I was very lucky that there were 3 particularly kind and encouraging patients on the same ward, with different cancers, and that helped me alot.

Lots of love to your Mum, my children have been a huge support to me through all this, I'm really proud of them, I bet your Mum is too.  If she has any more questions and I can help in any way, let me know.

SHP