Not coping. Help needed

[Butterfly1983]

Hi Jodie, may I ask what treatments you have had. My mom has secondary bone cancer and brain mets. She was diagnosed in December.  She had WBR and a course of chemo. They said they wouldn’t scan her brain again but have now decided they will 6 months post WBR. X

[Annary]

Yes let’s just enjoy and live in the moment at Christmas and the New Year!! Wishing everyone lots of effective treatments and great results.

Think positive thoughts, try to help as many others as we can and enjoy time with family and friends!! God bless all of us.

[funnyface]

Ruth, Best wishes! Happy to see you posting! You made my day! Enjoy the holidays! FF

[nicky08]

Enjoy your time with your family Ruth. It’s a tough time but I’m sure they will all help you on your road to recovery from the after effects of wbr. 

Nicky x

[Nanofthree]

Just wanted to wish you all a happy Christmas.  Lets all try and forget about this rotten disease over Christmas.  I wanted to thank you all for your words of wisdom over the past few weeks.  I am still suffering with the after effects of the wbr.  I have scans at the end of January to see if the wbr and the Eribulin are working, but I can't even think about going there at the moment.

Melinda, your experience of wbr has given me real hope.

Love and hope to you all.  Let's hope next year brings some breakthroughs in treatments.  Will post more after Christmas.

love Ruth x

[Melinda]

Hi Nanofthree, how are you feeling today ?  I had WBR at the start of the year.  Felt weak and wobbly for a few weeks and very numb inside regarding feelings. This I found was the worst part afterwards, I just couldn’t get back into my life, almost like I had shutdown.  Thankfully I woke up one morning and felt a whole lot better, I returned to work and as a family we are having lots of trips away and enjoying fun things.  I am scared but I try to keep my mind active and not let it bring me down.  Xxx

[Kate21]

Hi Nanofthree, afraid I don’t personally but remember someone posting they’d had it and were doing very well, did you see that post? Isn’t it early days at the moment for you? Try to stay positive as I believe it helps, so many of us are thinking about you, sending you a big hug, much love Kate x

I’ve just looked back through the thread and Melinda posted about her experience on 4th November x

[Nanofthree]

Thank you for thinking of me everyone.  I am doing ok but get so scared.  I do hope I have done the right thing by having the wbr.  The after effects are quite hard and they say these could carry on for a few weeks but I am feeling less wobbly now.  I had my second Eribulin a couple of days ago, which left me very tired but am fine today.  Please does anyone know of anybody who has gone through this and come out the other side with a bit of life left.  I am so scared at the moment.  I dont want to give up yet. Xx

[Kate21]

Hi Nanofthree, it’s really good to see you posting on the forum again, I had, like many others, been thinking about you. I see you have a festive birthday like me. I hope everything settles down for you and you have a happy Christmas and enjoy your birthday. Kate xx

[nicky08]

Hi nanofthree

How lovely to hear from you.  I do hope you cope with the after effecs of WBR, I know from meeting ladies who had this a few years back how it can affect you more after it has taken place than whilst you are having treatment.  I do wish you and your family a very happy christmas and hope you can enjoy all your times together including your big birthday.

Sending hugs

Nicky xx

[funnyface]

Nanofthree, Those are some big milestones. You must look forward to enjoying them!! Fifty years is awesome! FF

[Carolyn52]

Hello nan of three
Wow 70 that's a big landmark birthday ..I'm 66 and it's hard to cope with the treatments so easily.
Since the cape has been reduced I don't feel so well. .not until my platelettes recover I'm on a low dose. .I would have preferred the earlier dose as I felt really well for the first 5 cycles but I must follow what the oncologist says.

[Nanofthree]

Thank you Carolyn.  I wondered how you are getting on.  Is the Capecitabine still working its magic for you?  I kind of withdrew from everything when I started the wbr but now I am determined not to let it ruin my life.  I dont know what is round the next corner, I guess none of us do.  I am 70 on new years eve of all days, then my golden wedding on 29 March.  I need to aim for these.  Just short steps!  Take care and I really hope you, and indeed all you lovely ladies, are ok. Xx

[funnyface]

Nanofthree, You are very brave! Sounds like you are doing well after it. I'm sorry life has changed. I think the changes we go through with this are scary. Things we never thought we would have to do so early in life! Keep in touch if you can. FF

[Carolyn52]

Hello nan of three ..it's so good to hear from you and that you made the decision to have the wbr ..very brave but it can be very successful for a lot of ladies. Hoping you make a good recovery to enjoy Xmas. ..but please keep in touch. .don't do the silent thing as we worry about you.
Sending special hugs ❤❤❤❤❤

[Nanofthree]

Hello everyone.  Sorry to have been away from the forum for a while.  You are right, Carolyn, I did go for the wbr in the end.  Five treatments, finished 12 days ago.  After I thought about it very carefully I dont think I had a choice.  It wasnt as bad as I thought it would be, though the side effects will get worse before they get better apparently.  Main problem is feeling wobbly especially in the morning, but not sure if it is the steroids causing this.  They have now been reduced and that horrid puffy look is going!

i have just had my first treatment of Eribulin.  So far so good apart from the normal fatigue.

My hair is starting to fall out now.  Not sure if it will all go but I suspect it will.

So I dont really know where I stand and dont want to, to be honest with you.  I have read some dreadful and frightening things and also things that give me hope.  I suspect I will continue to bury my head in the sand!

Anyway, would love to know how everone is getting on.  Love to all xx

ps.  Unfortunately I am no longer able to drive and cant be left alone in case I have another seizure, so life is very different now. Xx

[funnyface]

Nanofthree, Carolyn is right.We are here for you! Hugs! FF

[Carolyn52]

Nan of three
You have gone quiet on us ..how are you doing? What decisions did you make ? Somehow I think you have had the wbr and resting .
We are all holding your hands ...xxxxc

[Stillhere]

Thinking of you Nanofthree (((((hugs))))

[nicky08]

We will all be a big circle of hands holding you. I hope you get some good answers to your questions today and you have the time to make the right decision for you, and your family. Thinking of you from one old timer to another 😉

Nicky x

[bonariensis]

Hi Nanof3
We are all with you today. Hope your onc can tell you what you need to know.
Hugs Bon x

[Kate21]

Hi Nanofthree, thinking about you today, hope you get all the answers you need, love Kate xx

[funnyface]

Nanofthree, Good luck tomorrow! I like your idea of going away and thinking about things! FF

[Nanofthree]

Hi Carolyn.  Thank you for thinking of me.  Feeling very nervous at the moment.  I havent made any decisions yet until I have all the options they are going to throw at me.  I am so glad you are doing so well.  Long may it continue for you.  Hugs back to you.  Xx

[Carolyn52]

Hello nanofthree
All the best for tomorrow and I hope u have made a decision but ask lots of questions and be sure. ..I'm very deliberately not giving advise to sway you .it's something only you can make which direction to take.
Sending biggy hugs from my special hug cupboard xxf💟💟💟💟

[Nanofthree]

Hi Nicky.  Good to hear from you as another'old timer'.  This is the one thing i have dreaded all along.  Am going to the hospital armed with information tomorrow.  I am certainly going to go away and think about what they say before I commit to anything at all.  This is all such new territory for me I dont know what to think at the moment.  All I know is that I feel ok at the moment and I really dont want that to change so that I turn into a vegetable, unable to do or think for myself. Xx

[nicky08]

Hi Nanofthree/Ruth

sorry to bear you are in such a dilemma but it looks like you’ve had some good advice and the latest post from Jodie sound encouraging. I hope all of this helps you decide the best course of action/treatment for you. Sorry I can’t be of any help but thinking of you

Nicky xx

[Nanofthree]

Hi Jodie. I have pmd you. X

[Jodie.d.]

Hi Nanofthree,
I was diagnosed with brain Mets in 2014 and my prognosis was 2x weeks... Last year, after lots of treatments, those tumours have disappeared. I have since found out this year that all the secondaries in my liver have vanished too.
Don't give up!! Make plans and keep looking in to the future. If you want to message privately I can tell you about all my treatments etc? Xx

[Kate21]

Hi Nanofthree, please do! To me the results on the news regarding the children was too much to ignore. At the study day I mentioned one of the speakers had been involved with one of the families in the headlines although he didn’t say much about it. The fb group if you want to take a look is Natural Medicine Dundee Scotland. It’s worth taking a look just to see the questions she suggests asking an Oncologist prescribing treatment. I wish you well and you’re in my thoughts, please do let us know how you get on Kxx

[Nanofthree]

Hi Carolyn.  I will keep in touch.  Horrible that we are both in more or less the same boat.  The news is still fresh to me so not coping very well.  Still waiting for onc/radiology appointment.  I want it, but I dont, if you know what I mean.  Lots of decisions to make.  Love xx

[Nanofthree]

Hi Kate.  Yes, this is something I had considered, especially in the light of recent news.  It is part of the armoury I will take when I go and see the once, hopefully soon.  Thank you.  Will let you know if there is any hope there. Xx

[Nanofthree]

Hi Debs.  Just looked on this.  Wow, what a positive site!  Thank you. Xx

[Mermaid007]

Hello Nanofthree,

I just looked on breastcancer.org an American site I visit and there is a very active  forum called “ Brain met sisters “ they discuss WBR etc so might be some help to you.

with love

Debs

[funnyface]

Ramade, I guess it is most chemo. I'm sure it is for people who have gone through most treatments. I do know it has had to been a few years since the chemo was used. Believe me it's on my list of things to try! FF

[Kate21]

Hi Nanofthree, I have little knowledge of your diagnosis but wanted to say I’m very sorry to read your post and the position you are in. Before I say this I’m not trying to advocate my holistic ideas which I follow for my diagnosis, or encouraging you to break the law, but I wondered with all the headlines in the news this past week or so would it be worth considering, or at least researching to see if FECO could be an option for you? I really don’t know much about it but did read when it was announced the government were putting restrictions on its use that some cancer patients (I believe when other treatments fail or to help with side effects) are one group that can be considered to use it. I don’t even know if it is recommended for your diagnosis but when I attended a study day run by a charity fairly recently there was a gentleman there who was singing it’s praises for his. There is a fb group that has a lot of information about it if it was something you wanted to research. The same fb group also has a very useful list of questions to ask your Oncologist when they recommend a new treatment. Again, I just wondered if it was something worth you looking into and understand if my post is removed. I hope which ever decision you reach brings you comfort, sending love, Kate xx

.

[Nanofthree]

Yes, I would be interested to know this too.  Have been doing lots of googling this weekend.  I know the hospital don't like us doing this, but tough.  I need to go armed with questions. Xx

[ramade]

Just wondering with you saying about a return to cape ff, are there many things we can revisit after a time lapse, does anyone out there know?

Ramade

[Carolyn52]

Nanofthree
I'm being a bit sensible as I don't want to prejudice you into making the wrong decision here ..so not actually quoting facts and things i read on Google! I do hope you decide the best option . .keep in touch as we are all holding your hand. ..
Xxx

[funnyface]

Nanofthree, I would push to try cape again. I too have had cape. It's was about 4 years ago for me. I'm afraid of WBR. I guess if cape didn't work then I would be accepting the end. Each of us is different and its just how I feel. I've had plenty of years to think about it. FF

[Nanofthree]

Hi FF.  What would you do if you didnt want the wbr?   Would you try for a chemo that crosses the blood brain barrier?  I never realised that wbr could be so devastating. Xx

[Nanofthree]

Hi M elinda.  As you can see from my other replies to posts I have never felt in such a quandry.  I am amazed that you are back at work after the wbr.  I am so worried that if I go for it I will never be the same mentally or physically.  I dont want to end up a shadow of my former self.  I really dont know what to do. Xx

[Nanofthree]

Hi Carolyn.  I have spent all day wondering what to do about the wbr.  I am due to see the radiologist next week.  A lot to think about.  I hope you dont mind me asking, but are you happy at the decision you came to, and do you now feel some hope about all this?  At the moment I have never felt in such a bad place or so scared. Xx

[Carolyn52]

I hope that more ladies come forward to offer you advice as there must be many reading. Most times we take the treatment regimes our oncologist offers but personally I felt I needed to pause and do a bit of googling. It's a big decision to take ..ask loads of questions. .I felt with so.many family occasions I wanted quality of life rather than quantity.
Hope u make the right decision and keep in touch with us ..we will support you xxx

[Melinda]

Morning Nanofthree,

I can offer you no advice as the decision is yours to make but what I can tell you is my experience of WBR.

i had 5 days of It in January this year.  The making of the mask, one of my fears as I am claustrophobic was nowhere near as bad as I imagined.  The treatment itself was very quick and totally painless.

For at least 4 weeks afterwards I felt so low I just didn’t know how to get through the days.  But I did.  I think it was the combo of shock, steroids and treatment.  I returned to work full time and the depression lifted.  

I am now on cape and feeling fine, I also have zometa and blood thinning tablets.  I have liver met as well.

Big hugs to you xx

[ramade]

Nanofthree, so sorry to hear your news. As everyone has said talk through with oncologist carefully until you feel you understand all options. if you are unfortunate enough to see one who stands up after a few minutes signalling to you the consultation is over, stay sitting until you are happy to leave. Also you canask about trials, there are always quite a few going on.

So sorry also for your news Carolyn, i hope the twins are still lightening your days.

much love to all as ever

Ramade xx

[funnyface]

Nanofthree, You might have to fight to revisit cape but might be worth it!! Best wishes! FF

[Nanofthree]

Hi FF.  This has really given me food for thought.  I do neeed to have a good talk about this.  Who knows, maybe I can revisit cape.  It is worth a try isnt it.  A friend of mine who had wbr ended up dying of a stroke.  I dont want to go down that road.  Lots to think about.  Thank you. Xx

[funnyface]

Nanofthree, I don't have brain mets, but agree with Carolyn. I've already told my family NO WBR for me. I don't want to upset you, I just know I won't do it. I would definitely be having a heart to heart with my oncologist. You might be able to revisit cape. Sometimes after a few years the drug will work again! Big hugs! I'm sorry you are going through this. FF