Bone mets - please join in

[Carolyn52]

Thanks mo ...I'm just glad they are now delivered but they are premature and in incubators but visiting them tomorrow.
Hope u keeping ok too ....and holding onto the hair !
Hugs xxx

[Jobey68]

Congratulations Carolyn! More lovely babies 👶🏼 👶🏼💖💙 

[redridinghood]

Carolyn.........what wonderful news!! Twins! As a little girl myself I had twin baby dolls and always wanted them myself. Definitely a drain on the £££ but who cares! When you meet them please give them a little squeeze from me. Babies are what's best in the world. What it's all about.

Your scan. I would say 'no news is good news' as you have heard nothing. But I think the 29th is a long time to wait. Everybody likes confirmation. But I have a good feeling.

Take care, and congratulations. Aren't you clever? Twins!

mo                     xxxxxxxx     (Some of those are for you-know-who.)

[Suze57]

Congratulations Carolyn. Wonderful news! xx 

[nicky08]

Congratulations Carolyn, 2 lovely new grandchildren to spoil 🙂  Hoping that Mum and babies are doing well and you get to see them soon.

Nicky xx

[ramade]

Lovely news Carolyn, so pleased for you. The little ones have the ability to take your mind off cancer when nothing else does.

ramade xx

[Carolyn52]

Hello lindy loo
Thanks ..no scan results yet ...not seeing oncologist to 29th November so maybe will have to wait to then ..I'm working on the theory if they were bad ..they would call me in before that but I honestly don't understand how things work !!

Xxxx

[LYNDYLOO]

Afternoon Carolyn

Congratulations on your new additions to the family

By the way have you had your scan results?

Linda

[jazmia]

hi carolyn .

i am not too bad as finished radio and have chem tablets two weeks out of three then herceptin once every three weeks ,i have to have a ct scan to see if chemo is working ,i dont think it is but hopefully i am wrong ,have not had appointment through yet for scan,i am just so so tired carolyn ,it can not be normal,though i do have a few good days .

just hoping for some good news .

love reneexxxxxxx

[Carolyn52]

Renee
Your grandson sounds wonderful taking on 2 small boys but with so many broken relationships these days it's very normal.
How are you feeling? Hope you are coping with all the treatments thrown at you recently ..
Hugs xxx

[jazmia]

oh carolyn ,

how lovely for you and plenty to keep you occupied,i have two grandsons 25 and 22 and two granddaughters age 25 and 22 ,none married as yet but the oldes grandson is looking at next year and his partener has two small boys 2 and 4 from a previous relationship,but they are wonderful little kids and love my grandson to bits ,the oldest one has just been with aaron and he said to me i dont have a daddy i have an aaron?,how do you answer that carolyn ,very difficult;

love reneexxxxx

[Carolyn52]

Hello Renee

Yes they will certainly drain the purse strings as they are grandchildren no 5 and 6 !! Already have 12 year old grandtwins !!

Xxx

[jazmia]

hi carolyn ,

i am delighted for you ,and hope mum and babies are all doing well ,now you will never have any spare cash believe me

take care and lots of hugs for everyone 

reneex

[rosie53]

Awww Carolyn this is amazing news!! Congratulations so pleased for you.
Hugs Janette xxx

[funnyface]

Perfect! Congrats Grandma! FF

[Carolyn52]

My Twin Grandchildren now hatched.A Girl And A Boy. ..soooo excited can't wait to visit them later. Xxx

[Moijan]

Bon, I have been using your lovely graphic ever since xx

[Moijan]

hi Lauren

yes, it does put you at risk if you add your email address.....also people won't want to email, in case you happened to not be who you appear to be...we get lots of people on here who try to find out who WE are and some who just want to use the forum to pressure sell, sadly.

my gut feeling is that you are a genuine user who really needs some advice and help, and I see some of use have responded....you can also ask the moderators to enable your private messaging then you can chat privately with anyone you choose.

so sorry to hear about mum....it's harder in some ways to be a helper/carer and have to watch than go through it ourselves. My guess is mums onc is being very thorough...try not to second guess/crystal ball as it just feels so much worse then. Also googling won't help either. Try and keep an open mind...they might just want a closer look at how mums cells are developing...to rule out stuff.

you can chat on the helpline above or ring Macmillan `they are excellent.

best of luck, much love and hugs, Moijan💚💚💚

[Babsy]

Lauren, I’ve got cancer in my bone marrow(and about everywhere else ha ha) but the effect of it in the bone marrow is that your calcium levels are great,y altered (take Adcal with vit d for this) it also effects the blood cells being produced. I’m under an integrative oncology charity (www.canceroptions.com) which help with the right type of supplements. My main effect is haemoglobin levels which fall every seven weeks which which means I have two units of blood in that time period. I keep my white cells and platelet levels within the normal range (sometimes exceeding) with a supplement available from Amazon, Mico-Sol, Agarius  Blazei musherooms. There was a study in Spain and Italy which treated stage4 breast cancer patients with this. The results were remarkable and they have been with me. My oncologist wanted all of the details as she wanted to share. They are about 50-54£ a month. I started off with two and am now on 3 a day, following advice. There are always ways to move forward. Good luck, and loads of hugs and kisses B x

[ramade]

Lauren, I'm  not sure which hospital you're at but it won't hurt to keep phoning about your next appointment until you get one. Not sure why they're looking at bone marrow but you'll find out.write down your questions before you next go in. Try not to worry they will get her on treatment and then hopefully she will pick up. I have cancer in nearly every bone in my body but I expect to live for years(maybe I'm being overoptimistic) but there you go.i'm 60.it's good newsthat her other organs are free.being misdiagnosed is really annoying and would no doubt not help your mum to feel better.i was misdiagnosed for 4 years and lost a vocal cord to cancer because of that but it is important to keep looking forward. Stay on thissite because the people on here are lovely and will help you a lot.

Hugs

ramadexx

[Carolyn52]

Hello Lauren

I replied to you on the other thread ..as much help really as a chocolate teapot !! But we are here to support you and your mum ..
Sending hugs to you both xxxx

[Optimissy64]

Hi Lauren

I've responded to your other post on the other thread, suggesting you remove your private email address for your own protectioin. I'm sure you will get a response from other ladies on either of those threads. xxxxxx

[Lauren2011]

In June 2017 my mum had been feeling very unless for some time but couldn't pin point what was wrong with her she was also getting some back ache so she went to her GP which he told her it's muscular pain she went away thinking it would get better. But it started getting worse so in august she went back again and they said we will do some bloods and a x ray just to see if anything comes up anyway bloods come back high calcium and x ray on chest area come back full of small lytic lesions everywhere they could see so they referred her to the breast clinic because my mum had breast cancer previously 10 years before they did biopsys scans etc which showed she had breast cancer but this time it's in the over breast the one she had in before is clear.. she has these cancer spots all over her ribs collar bone shoulders spine and hips but no major organs as of yet! Calcium levels are making her very sick and week she's lost so much weight as she can't eat and on very strong pain meds she's in and out of hosp trying to get calcium levels down too! She is feeling very down and she can't stop thinking she hasn't got long left we haven't even seen a oncologist yet it's been 3 weeks since they finally referred her but heard nothing as of yet! She as been referred to someone else too to check her bloods for cancer now they also want to do bone marrow biopsy is this rountie? Or is there something they aren't telling us? How long did it take you all to see oncologist? And once you did how long until you started treatment and what treatment did they put you on? How long has it been since your diagnosis and how well are you all doing we want to speak to people in same situation life is so cruel to do this to people! My mum is moving in with me as she can't take care of herself anymore she struggles with the most littlest things now picking the kettle up with water in it hurts her. Is there a good possibility she is going to be here for some time or do we need to prepare ourselves for the worst if anyone can relate and wants to talk direct please email me email removed thanks for reading xx

[rosie53]

Haha B that is sooo funny.....but true!!!
Hi ladies, hope everyone is doing ok, I don’t post that often these days but I do still read all the posts.
Take care ladies, hugs Janette xxx

[jazmia]

Absolutely great,,,pleased there are more than me out there suffering from this.

take care .love reneex

[bonariensis]

Saw this on another site this morning

[Moijan]

Interesting about ports...they do dopower ports at my hospital, but mine was a rt mastec and Lymphoedema and so my guess is a port would be left side. I bottled out last time....but one day likely will need one....I seem prone to all sorts of infections so. Knowing too much, I'd worry about a port being a infection risk

the other thing is...local hosps near me - nurses etc not trained to use ports....and it's not a backwater!

recently was in with cellulitis and usual nightmare ensued re veins etc.

hey ho

Mx

[funnyface]

Nicky, You can see mine with some of my shirts. Mine is more of just a bump or small lump. Not real obvious. I don't mind it at all. It isn't a power point. My surgeon said the best place to place the port is the right side of chest bc it is straight up into the jugular vein. She said this place met site has the least problems.

[nicky08]

Hi FF, thanks for the info about the seat belts. To be honest I've got used to it over the 3-4 years I've had the port. What I haven't got used to though it its actual siting where it is very visible under my skin and therefore I have to really think about clothes, especially tops of any sort, before I buy them. It is so prominent and if I'd been asked I would have said for them to have moved it before they fixed it in place. If I go onto a hormone/tablet treatment I am going to ask for it to be removed as it will need flushing every so often which will be a bit annoying. I have asked before and I know if I wanted another one put in I could have it done on the other side and have a power port fitted instead so I could have the CT dye injected - that's usually another stressful time when they play hunt-the-vein! At the time I had mine fitted our local hospital didn't have anyone trained to do them so I had to go to another hospital who always use the larger, older type of port. Our local hospital now does fit them and uses a smaller port, but I'd need to check if it's a power port. Either way I know another time I would ask for it to be more hidden. It's currently so obvious the chemo nurses and I have a joke about it that it's like having a target painted to my chest! 

Hiwever I don't regret having one for one minute, life on IV treatment has been a breeze since I had it - relatively speaking of course 😉

Nicky xx

[funnyface]

AlexC., Please don't take this as being nosey. May I ask why they say there might not be a treatment for you?

This is your life and you need to fight for yourself and your babies! Do not let the drs push you around. Please get a second opinion! HUGS! FF

[funnyface]

Alexde, I live in the USA. They seem to give out more ports. I have had my port since March 2006! It is on my right side of chest. They flush it after they access it. If you are on an oral drug they like to flush it at 6 to 8 weeks. Mine works so well when not in use they flush it every 3 months. If you aren't good with needles they can give you Emla cream to put on to numb it. You need to put the cream on about 45 mins to an hour before so you are numb. With the port you can get your bath or shower with no problem. You can swim. Fight to get it!! FF

[funnyface]

 Nicky, Ask your car dealer ship if they have seatbelt extenders and explain about your port. Here in the US most places give them to you. This ma k rd the seat belt buckle in a different spot and the shoulder strap will move over some. Mine doesn't hit my port with this. You can also buy things to pad the shoulder strap. FF

[nicky08]

Hi Alex

Generally I'm doing OK. A few ups and downs in the past 12 months, mainly from getting a HER2 positive result from a biopsy and being treated as such. However on clodpser inspection of the FISH test (which is the more actuate one carried out of the original test inconclusive or weakly HER2) it was found out I was only just over the 'score' for what determines that you are HER2+. Currently waiting to probably start a trial based around hormone therapy having just completed 8 cycles of eribulin. Anyway, enough about me! Just to say if your veins are as shot to pieces as mine are then definitely consider having a port. I had one fitted a about 3 years ago when I started on Herceptin/Docetaxel/pertuzamab and it made the whole IV trearment so much quicker and none of the hunt-the-vein that all of us with lousy veins have to suffer. The chemo nurses also preferred it as it's quick to set up. And, unlike a PICC line it doesn't need flushing weekly and there's little risk of infection. In fact most of the time you don't even know it's there - just make sure it is fitted where you are comfortable - mine is pretty much right underneath where my seatbelt goes across my chest, something I hadn't even thought of when it was being fitted.

Good luck with Kadcyla and let's hope it knocks the little uggers for six

Nicky X 

[Alexde]

Hi Nicky

i remember you from years ago, I hope you are doing ok.  It’s nice to see a familiar name after such a long time.  You are correct I have got used to feeling well, seeing an onc every six months and having a small injection every 3 weeks.  The I/V is likely to be a problem as I have lymphodema in my left arm and my veins are shot with all the previous intravenous treatment, chemo and then herceptin.  I am going to see if I can get a port fitted.  

[Alexde]

Hi moijan

thanks for replying.  The onc did his best but was over-ruled by the MDT who insisted that NICE guidelines were followed to the letter.  Bizarrely my onc also works for NICE.  We did discuss getting a second opinion but I decided against it because another area will be governed by the same guidance.  I am going to leave going on a trial until later.  I am ok having Kadcyla I just wanted to save it until later.  

Alex

[Alexde]

Hi vercours

Thank you for responding.  It’s good to know someone else that is on the same drug.  I did find a Kadcyla thread on here but not been used for a while.  Like any chemo some people more side effects than others, however I have spoken to a chemo nurse and she told me that patients who had been on herceptin for a long while seem to tolerate Kadcyla better.  I can live with a week of feeling tired.  I have three mets in my bones two in my spine and one in my hip.  One of the areas in my spine showed a small amount of progression, I also have some pain in that area which is being controlled with naproxen.  I intend to continue with my dog agility classes😀

i have have my first Kadcyla this Friday. 

Alex

[jazmia]

hi alex 

i can not give any support as such as not in your position but guess someone on here will answer you,so hang on in there but what i can say is you will have wonderful support from all the ladies on here as they are  great bunch and wont let you down if they can help it,i dont visit the site a lot but always get aswers when i do ..

thinking of you and all my love 

reneexxxxxxxx

[Alex1980cooper]

Hi guys my name is Alex I'm new on the forum but I've been looking on here a while . Got consultant for me Thursday to be told there might be not any treatment for me I have a young family is there any else going through a similar thing X

[Moijan]

Hi Stripey, I seem to think/recall it has been done before....why not start a new thread with that as a title?

may make really good sense if the bc isn't anywhere else, have you had a Whole Body MRI?I recently was given one as apparently they are very (much more) accurate and then if it is true-then you are in a better place to decide...awful if you went through that and then they discovered it was also elsewherexx

[Carolyn52]

Hello stripey

Welcome back ..sorry haven't a clue about rib removal ...think I read in the olden days ...models had them removed to give them smaller waists !! Not much help am I?

[Stripey]

2:32 PM
Hello all,
I haven’t posted for ages, just because I’ve been hectic with other stuff. Sending warm and gentle hugs to you all. I started to read through previous posts but I don’t think I have much I can add other than I really do empathise and send my very best thoughts. The unknown, the waiting, pain, sweats...! I’m sorry everyone who’s having a particularly tough time at the moment.
I’m really sorry to stomp in but in the very off chance...
I wondered if anyone has had or has heard of having a rib removed? My mets are only in one place at the moment (one of my ribs), I have a meeting with a surgeon on Wednesday who has suggested he cited remove the rib.
I had an unsuccessful biopsy a week or so ago (they couldn’t get samples because it was getting too close to puncturing my lung apparently).
I have no idea about this surgery and I can’t find a thing about it for secondary breast cancer anywhere.
Please don’t feel obliged to respond! I’m okay and I think other people on here at the mo need more support than I do. I’d just love to hear from anyone that has anything to say on this?!
Thanks all xxxx

[funnyface]

Chris, I'm sorry Ladybird is in so much pain. Hoping the doctors can get it under control for her and that it doesn't dope her up so much. Does heat help? 

[Moijan]

Hi Chris,

send Ladybird lots of love and hugs from us.xx and praying for a pain free few months for her

MoijanXx

[Moijan]

Hi Chris,

send Ladybird lots of love and hugs from us.xx and praying for a pain free few months for her

Moijan😘

[Carolyn52]

Chris

Poor ladybird ...sending hugs that the morphine helps the pain ...
Xxxx🐞🐞🐞🐞

[Ladybird2]

Ladybird's had her morphine increased at the suggestion of the Macmillan nurse. I have to supplement her pain patch with a syringe of liquid morphine.
Early results appear to make her dopey...I hope this will improve as the pain is still troubling her.
Never a dull moment!
Chris(topher)
X

[Moijan]

Hi Jellytot, a few years back I had a brain MRI....was clear of cancer but showed some blocked tiny vessels.....as others have said...keep an open mind until the scan is properly assessed....might not be cancer, other things can cause lesions in the brain......try to keep an open mind, and also try to distance yourself a bit until you actually 'know' the score..... our minds[mine included!] are absolutely brilliant at focussing upon worst case scenarios [wcs] my mind has an honours degree in this and it's usually way off beam.

lots of love....try to focus on today nothing is changed from last month......until you are told otherwise.

Moijanxx👩

[Moijan]

Hi Alex

just a thought here....I'm sure your onc is correct, they usually are, but have you sought another opinion? [blast this preemptive text] Maybe he explained why...you haven't elaborated ... but sometimes there are trial etc elsewhere that you could ask about? Why are you not able to retry herceptin if kadcyla stops being useful?

i am not on kadcyla so can't really answer your questions but there are threads re kadcyla elsewhere on the forum you could read, if no one here is on it.

All I'm saying really, is keep questioning, keep researching...your onc will understand.

Much love to you.

Moijan👩

[Hayeswen]

Jellytot

I just wanted to add my hugs to you . Like you I have only started the journey this year so we must take hope from others that we have lots of treatments. I seem to get low when I am alone or with my husband and kids I have a different face for my friends and at work but everyone is right in that we must enjoy normal and treat ourselves. Wishing you the best Wendy x

[nicky08]

Hi ladies

Lots to take in at the moment with many of you struggling.

Firstly Jellytot, it is no wonder you are all over the place. The jump straight into the menopause is bad enough (I remember it very well with my primary BC when my ovaries were shut down with Zoladex) let alone all the other anxieties you have, especially the 'abnormal' head scan. It doesn't help that you have to wait 2 weeks before you have an appointment to discuss further as no doubt you are full of questions. Can you bring this forward? Is there a BCN you can speak to and, as has been suggested, maybe the local support from a hospice or Macmillan nurse who can help. I'm sorry I'm not much help with this, other than understanding how awful the waiting can be, but just to let you know we are all here for you when you want to offload. As has also been suggested, if it does turn out you need trearment for brain mets, there is an active thread on here with ladies dealing with the types of treatments etc. 

Babsy, good to hear from you and that you have found your contented space, long may it continue for you and your family. Enjoy the sea air and getting out on the beach, all that ozone must be helping!

Alexde, welcome back. You've had a good long stint on Herceptin so the fear of the unknown won't be helping you! Kadcyla is a well tolerated chemo, there is a thread on here somewhere that you might want to find and read as there are a few ladies on it. I was on it last year when I had progression in my liver but as I turned out to only be very weakly HER2+ it wasn't effective for me. However when I used to have my chemo on the ward the lady next to me had been on it for a couple of years and other than feeling tired the day after the infusion she didn't suffer with any side effects. Hopefully it will work well for you as well. What you might find difficult to adapt to is having to go back to an IV drug, I hated it when I first came of hormone drugs, which of course you take yourself every day, and had to go to longer times on the ward.

Hi to all mets ladies, and gents, sorry if I've missed anyone's post or news. 

Nicky x