Bone mets - please join in

[nicky08]

Hi Sarah

I get really annoyed that consultants quote figures like that, as others have said, as they are often out of date and don't take into account new treatments that are currently being used. Grrrrr. It really doesn't help anyone other than make us, the patient, anxious and scared. As I've said to you on another thread I have been living with mets for 8 years now so 'statistically' I should have been dead for 6 of those!

Hi Lynn, how lovely - a walk on the beach 😊 And I'm glad you are having such a lovely time, it will certainly re charge your batteries, enjoy the rest of it.

Nicky x

[rosie53]

Hi Sarahlouise, please don't think too much about what onc has said about your prognosis, quite honestly nobody knows he/she is just going off statistics!!!!! Which due to new treatments these are now outdated. Cancer is so individual and no one person is the same, my onc has never mentioned the word prognosis all she told me on my first consultation was it cannot be cured but can be treated. 

Hugs Janette xxxx 

[Lynnq]

Hi Sarah Louise

I am on holiday at the moment so not been posting much.   We are having a lazy evening so just thought I would catch up.

i was diagnosed Oct 2012, primary and secondary at the same time.....I have only ever had Letrozole as my cancer is strongly ER+.   

Had secondaries in spine and peritoneal area and skin.   Was told a prognosis of 2-3 years, and the peritoneal

may be a little less.  My peritoneal mets are no longer showing and my bone mets have remained stable, and/or healed.  The one skin met I had was removed and never recurred, so these Prognosis they give us are just numbers....here I am more than three years later - still get anxious and have sleepless nights but proof that they are often inaccurate....

hi to everyone else...due to fly home on Thursday, had a wonderful time, went for a lovely long walk on the beach today - can't believe how well I feel

best wishes to all, 

[Tournesol]

Hi Sarah Louise,

Welcome to the board although sorry that you've had to join us. Re the prognosis, so much depends on how your cancer responds to the various treatments that they really can't tell at this stage, so please don't take it as a given. I think 2 or 3 years is some sort of overall average but that doesn't tell you how you will do. All the best with your treatment.

Tournesol x

[Sarah Louise]

Thanks ladies, it's so nice to hear your stories and to know I'm not alone with this. Unfortunately at the moment it's all I can think about, morning noon and night. I'm not taking anything for granted and spending as much time as I can with the children and husband. I find myself getting teary when the children do something lovely and I have to quickly stop myself before they realise that Mummy is upset.
When the consultant told me the cancer had spread he said my life expectancy is around 2 yrs. Was anyone else told this? It almost felt as if i had neen given up on! I had the knee jerk reaction of " no way, I'm not giving up that easy" and have continued to have this attitude most days. I say most days as of course there has been a few days where I have felt absolutely rubbish and just cried all day.

As for chemo, I asked to wear the cold cap. It was uncomfortable to start with but became more bearable as time went on and so far so good. If my hair does fall out I will be devastated, not just for me but for children. The hospital where I am being treated has a wig shop so I can pop in there if needed. Carolyn.... you really made me laugh tonight when I read about your wig disasters!! 😂
I'm really glad I've found such a welcoming place to talk to others. Thanks ladies xx

[Waffles]

Hi Sarah Louise, I've was only diagnosed with SBC in pelvis and spine 7 months ago and, at the time of diagnosis, and for a few months afterwards, I was in a lot of pain and quite depressed. However, the pain is much less now (due mainly to bone strengtheners and radiotherapy)and, to be honest, I'm much happier and don't think about cancer all the time any more. I think that seems to be the pattern with most of us after the initial shock.
I had been on anti hormonal medication for about 8 y years when my cancer came back so it doesn't work anymore for me as the cancer has become resistant. However, hopefully, once your initial chemo is over you will find that the anti hormonal medication will be very effective for you as you haven't had any exposure to these drugs. These treatments are usually much easier than IV chemo. I certainly had very few side effects. Although, to be honest, IV chemo wasn't too bad for me either when I had it 10 years ago.Like Carolyn, I found the hair loss hard to cope with. I think when I go on to chemo again I might go on one of those Look Good Feel Better courses. At the moment I' m on tablet chemo (xeloda) which I'm not finding too bad at all and it doesn't make your hair fall out.
As everyone has said you get great advice here and everyone is so kind. Keep posting. All the best xxx

[Carolyn52]

Hiya Sarah Louise , Think by swapping to bone mets board you will get a lot more support from ladies that have a huge amount of knowledge and kind hearts too,

I think the one thing in common between all of us is " CHEMO"   most of us have had to go that route sometime in our journey. I had mine in 2004 - FEC/CMF which was 12 sessions but if I remember I was ok through it apart from the hair loss which if you are like me - vain -  I hated . Not sure if you have decided to have the cold cap ? a lot of the ladies here have used it and managed to keep some hair and dignity !! I had a nightmare with the wigs .first one I opened the oven door and it caught fire almost . Second one I got paint on when I decided ( chemo brain) to paint the garage doors and the third one the dog ate. BUT by this time the hair had started growing and so I didnt need to risk a fourth one !!!!

I first joined this board in 2004 with the primary BC and met a lovely lady called Sue who was living in Spain and very scared being in a foreign country and we became daily e mail buddies for 7 years and I even went to Spain a couple of times to stay with her . I rejoined in October 2015 when I got the dx of bone mets but  I must confess didnt visit here for many years in between  as I think I just thought I needed to move on and had beaten this deadly thing. 

During the chemo dont be afraid to ask for help from friends and family especially with the kids etc and please use this board at any time when you are feeling down as most of us dont really sleep much and someone will reply to you at any time of the day. Im very familiar with silly night time tv and doing candy crush type games at silly o clock too.

Love Carolyn xxxxxxxxxxxxxxx

[stresshead]

Hi Janette..i took arimidex for 2.5 years  until it stopped working bt apart from usual se's...aches and fatigue iy was fine. Hope it works for you should you go ahead.x

[rosie53]

Hey scoubiesue your exactly the same as me!! 7 year from primary now have mets in my hips/pelvis ribs and spine and mine also hormone dependant I also had radio on my left hip around 18 months ago. 

Hope you are all enjoying your weekend Hugs Janette xxxx 

[scoobiesue]

Hi Sarah Louise. I am sure you will fine the ladies very supportive and informative, It's so comforting to be involved in a group where everyone knows exactly how you are feeling. I had BC 7 years ago and thought I was "fixed". In march 2015 SBC was found in my spine pelvis and ribs. So far I have been treated with hormonals and one session of radiotherapy on my femur. Wishing you well . Sue xxx 

[KazMOr]

Hi Sarah louise, I have only recently joined this forum too....But since I have it is really helped me, being able to ask questions and read about different treatments too....all the ladies have been so welcoming and it is lovely to know that you can share your worries and concerns with other people going through, or have been through, similar situations. I was diagnosed with my breast cancer in 2011 a couple of months before my 40th birthday. I had a mastectomy, chemo and radio and was put on tamoxifen.....all was well until last november when I found out it had spread to my spine....I have now been put on to Letrazole and Zoladex (to bring on Menapause). In december I also had a surgical procedure on my spine. Am due to start Zometa, to harden bones.....I wish you all the best for your treatment and remember all the ladies on her are very supportive ....Karen x x

[scratch]

Hi Sarah Louise.welcome.this site provides answers for most questions.some people have different stages and different treatments but everyone will help you.
As for you take as much help from friends and family to help out with school runs or shopping .you will find the strength to do all this.best wishes with your treatment.sharonx

[rosie53]

Hi Sarah Louise, welcome to the forum, sorry you have had to join us but we are a friendly bunch and are always on hand to help/advice and support. my story in brief,  primary 2007, low grade no chemo needed only had radio and tamoxifen, almost 2 yrs ago dx with mets in my hips ribs and spine,  was put on tamoxifen and have zoladex injections (to put me into menopause)  and denosumab injections but last October changed to letrozole. Please feel free to ask any questions, it's very early days for you, and this disease is an emotional roller coaster but you do find the strength to deal with it, take care I hope your chemo goes ok.

Hugs Janette xxxx 

[Sarah Louise]

Hello! Just popping in to say hello and introduce myself. I'm Sarah, 34 yrs old and mum to 2 young children. I was diagnosed in late December with breast cancer and more recently been told it's spread to my spine and pelvis. I started chemo last Saturday. The plan is to have 6 sessions of chemo and then an operation to have my overies removed and the cancer is hormone dependant. Would love to talk to people in similar situations xx

[KazMOr]

Hi Chocolates, I am based in Essex....but went to Queens Hospital for the Star Ablation Procedure I had on my spine....I am also stuck indoors doing housework today, If you find that magic wand can you let me borrow it please....Hope you all have a good weekend x x

[Chocolates]

Hi ladies, some good news on the thread this week. KazMOr, really good news for you.  Can I ask where you are based and where you went for your treatment?  All sounds very positive.

Janette, so sorry you are struggling - good idea to go and talk it through.  We shouldn't suffer, and we want a good quality of life.  Fingers crossed you get appt soon and can make a change for the better.

had some scans this morning to check internal working of ovaries etc.  All fine as far as she can see, but despite bloods saying 100% post menopause in Dec my ovaries are now back to working normally.  This could be the pattern for a while.  Just got to put up with it I think.  My cancer is not hormone receptive so doesn't have a bearing on that but don't really want an op as in my mind it may upset things if you know what I mean.

she scanned my liver, spleen, pelvis, pancreas as well and said all looked normal which was great.  Gall bladder is completely blocked though and not working.  No surprise there considering the pain I had last July.  I self diagnosed that one and cut out chocolate etc from diet and have been pain free since, and lost a couple of stones.  However, I suppose I need to think about that one.  At some point it's bound to flare up - I'll see what my onc says.

anyway have a good weekend ladies.  Blustery and wet down here so housework on the agenda today - it's never ending. I wish I could wave a magic wand and it would all be done.

lots of love and hugs,

hxxxxx

[redridinghood]

Yes.......KazMor.........well done! It's so nice to hear good news, and such interesting good news too. Thanks for sharing with us. Have a good weekend..........but hold onto your hats everyone! Gales!

mo

[JulieD]

Great news KazMor! xx

[scoobiesue]

KazMor amazing news. Enjoy your celebration Have a lovely weekend ladies. Sue xxxx

[Waffles]

Great news KazMor! You must be delighted. It sounds like you are getting very up to date treatment. Best wishes xxx

[rosie53]

Hi KazMor, great to read your appt went well, your treatment is something I have made a note of for future reference.
Hi scratch, well I have left a message with my oncs secretary to see if she can get me an appt ASAP to discuss changing my treatment, I really don't think I can continue with letrozole much longer, I am stuck with another horrible headache again today!!
Hugs Janette xxx

[scratch]

Hi Natalie.I was on letrozole for about ten months.it didn't work for me.i got progression.so now on docetaxol.but u I just wanted to say I agree with you I didn't feel like me at all.i had same prob as you and I felt I was about 90yrs old and detached from
things good luck for maybe a different hormone
.sharonx
things.good luck for maybe a different hormone.

[KazMOr]

Thank you Marirose, I am very lucky to have a great medical team and I am definitely over the moon. I havent celebrated yet but i will do x x

[Marirose]

Hi Janette

I don't doubt simvastatin does't work I was clear of cancer then and metformin may work for some maybe it saved me from being worse we will never know.

KazMOr what wonderful news for you you must have a good medical team around you I bet you are over the moon congratulations. I hope you celebrated your good news. 

xxx

[rosie53]

Hi marirose, yes your right about metformin being a diabetic drug and simvastatin is for cholesterol. I have been chatting to a lady on the secret Facebook page who's onc has prescribed simvastatin as part of her cancer treatment. I had never heard of this (and I work in pharmacy) but the Mail's article had some valid points on the treatment of simvastatin with cancer.
Hugs Janette xxx

[Carolyn52]

Thank you for posting Marirose - you sound like you have a wealth of knowledge with all these things and I salute you for taking so many pills and being so positive. I hate taking any tablets as whatever I take - I get the side effects !!!! BUT needs must to survive this dreadful shadow we have hanging over us !!

Carolyn xxxxxxxxxxxxx 

[KazMOr]

Hi Ladies, I had my follow up appointment with my Spine Surgeon Yesterday. He was very pleased with how the procedure went. I even got to see the xrays they took during the procedure, ive even took photos so i can show people....He said that he had managed to zapp quite a lot of the area and filled it with a small amount of cement.....I told him that I had been pain free since the procedure, which he was very pleased with. He has told me that I do not have to go for any more follow-up appointments with him but if or when something occurs, which he could help with, I can go straight back to see him.....All in all a very positive outcome, so I came home in a very happy mood yesterday xx 

[Marirose]

Hi Girls

The tablet you are talking about is Metformin 500mg x 2 a day for type 2 diabetes. I read the report on FB I have been taking it for about 10 month now I take it with food. My chemo e/e caused my blood sugar to rise I was only border line before that and it caused me to have to go on this medication. Not helped with the cancer I got 5 more mets before Xmas. I have started on Capecitabine now.

Simvastatin is for cholesterol I have taken this for a number of years until I was changed to antivastatin a stronger tablet. 

Infact it is driving me up the wall taking so many tablets with food before food 10-12 hrs between meals seems to be all I do these days.

Best wishes to you all xxx

[scoobiesue]

Hi Janette I took arimadex for 5 years during my primary. I tolerated it very well. However lots of people find the aches and pains difficult to manage. Hugs. Sue xxx

[rosie53]

Hi, well it is something I will definitely be bringing up with my onc.....I'll try anything!! Also think I'm going to discuss the possibility of changing my hormone treatment, don't think I can tolarate letrozole much longer 😣hate the way they are making me feel, from the aches and pains, fatigue, headaches and generally "not feeling like me" was thinking of maybe suggesting arimidex?  Anyone got any thoughts /opinions on these??

Hugs Janette xxxx 

[Carolyn52]

I read the Mail everyday and missed this article. I did read a few months ago about a Diabetes pill ( I cant remember what it was called )  at a cost of 1p a day was looking promising but all the Clinical Trials did not prove it and I dont think anything is progressing on that score now. This pill has not been approved for cancer treatment only diabetes but the lady that wrote the article had seen positive results in her cancer being put into remission.  

Simvastin would be brilliant if it does help fight cancer as my hubs has been taking it for years for his heart problems and its a fairly easy pill to tolerate.

Carolyn xxxxxxxx  

[rosie53]

Hi Stresshead, it was something that was mentioned on Facebook  (secret Facebook) it's an article from The Mail it's worth googling and having a read. I will certainly be speaking to my onc about it. 

Hugs Janette xxxxxxx 

[stresshead]

hi Janette..i was interested to see your post on simvastatin. My husband used to have that for cholesterol bt changed due to side effects (mainly stomach problems i think). What is for any particlar type of secondary (i have skin mets). If you get any frther info please post it..like most people i will try anything. Lots of love. x

[Sameelee3]

It's called;

The Problem of Pain; A slow Motion Catastrophe. 

I entered the word "Pain' into the search box. I tried to cut and paste a link, but couldn't do it into the box here. Let me know if you find it; if you can't I might be able to get a link onto my Facebook page. x

[Sameelee3]

Hi Janette, I have the R4 app on my phone, so use that, but if you go to the BBC website, you can find R4 there and access yesterday's schedule. I will try to get to the actual name of the programme for you and post it here. x

[rosie53]

Hi ladies, has anyone heard of simvastatin being used to help fight this nasty disease?  

Hugs Janette xxxx 

[Marirose]

Dear KazMOr

I asked my onc about your star ablation she said it was a new treatment that is very good but not for me. Sending you lots of love and hugs for tomorrow good luck xxx

[rosie53]

Hi sameelee, I would be interested in listening to that radio 4 programme, how do you get "catch up" on the radio? ? 

Hugs Janette xxxx 

[Sameelee3]

Hi KazMor, and everyone else! Just about to look up Star Ablation... never heard of it, but it'sgood to know there are new things coming up all the time.... Did anyone listen to the Radio 4 programme on Pain yesterday afternoon; was really interesting and might be worth a listen on 'Catch up" for some of us suffering at the moment. xxx

[KazMOr]

Hi Ladies, thanks for all the good luck messages for tomorrow. As with any results appointment I am a bit nervous. I shall let you all know how i get on tomorrow x x x

[scoobiesue]

Hello KazMor and welcome.I too am interested in your new treatment. Wishing you well today. Keep in touch and let us know how you get on. Hugs to all ladies. Sue xx

[Waffles]

Hi KazMor, I'm going to mention this treatment to my onc next time I see him I suspect it isn't available yet at my hospital but no harm in asking. Good luck tomorrow. xxx

[rosie53]

PS good luck with your appt tomorrow, let us know how you get on xxx

[rosie53]

Hi KazMor, welcome to the forum, I was really interested to read about your treatment of Star Ablation, I have just googled it and it looks a great option if you have already had radio (so can't have it in the same area again) but I looks like it is only for use on the spine? I am suffering a lot with pain in my left hip area but I had some rads there about 19 months ago so my onc is reluctant to do again
Hugs Janette xxx

[KazMOr]

Hi Waffles, Yes I had it done in the UK, but as my surgeon said "it is a very sexy new procedure" he did make me laugh. I had my surgery on December 15th and have my follow up appointment on Thursday 4th Feb to find out how it went and how much of the bad stuff he managed to Zap!....I am a bit nervous but as i said in my previous post I have had no pain since the procedure, which hopefully means it all went well x x

[Waffles]

Hi KazMor,
Welcome to the forum.Everyone is very helpful and friendly. I've only been a member for a few months but it's a good place to share our fears, worries and good news too. Its also good place to learn about new treatments such as Star ablation. I'd never heard of it before reading your post. I looked it up and it looks like a great treatment. Did you get the treatment in the UK? Best wishes xx

[KazMOr]

Hi Sameelee, we do seem to be in a similar place.I am 44, I too have 3 older children but i also have a 10 year old and i do worry about them more than myself...I also suffered with pain when standing or sitting for long periods....I had a surgical procedure done on my spine just before Christmas called a Star Ablation (if you google it you can see a video of this simple procedure)...It is amazing, as i have had absolutely no pain since having the procedure done...I have also had 5 Rads and am due to have a CT at the beginning of March .... x

[scoobiesue]

Thats sad. My BCN is supportive. She is good but her caseload is too large. We have no support group in my area and I have not been able to make contact with anyone in my situation. Have that chat very soon. Janette I hope to hear thatthe pain is sorted out ASAP. Hugs Sue xxx

[rosie53]

Oh my bcn is a waste of space!  Just before Christmas I went to see my GP to see if he would refer me to a different onc at The Christie who has been recommended to me by a few ladies who are under her, he said he would be quite happy to do that but why didn't I just see how my latest appt with my regular one went. Well still don't feel happy so I might go back to my GP for a chat. 

Thank you Sue for your help / advice hugs Janette xxxx 

[scoobiesue]

Hi Janette My consultant had said bloods are good which I think means TM are lower. He will order scans when I see him at the end of Feb.I think you are right about things having to be difficult before they operate. However I don't think you should have to be in so much pain.I would be discussing my concern with the BC nurse in the first instant.Keep in touch and let me know how you are getting on. Sue xxx