SHARE Metastatic Breast Cancer
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Hello

Just thought I'd introduce myself and say hello as I've only just found this group. I was diagnosed with metastic breast cancer in my bones in March this year. I'm middle aged and I live in the U.K. I was first diagnosed and treated for breast cancer in 2016. I still work full time and apart from numerous hospital appointments this second diagnosis hasn't yet caused me too many problems.

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Welcome to the group, we are all with you. Everyone has mbc. We try to help each other get through the rough spots.we also talk of our good times, good test results, bad results, family, different meds. So if you need or want to talk about you journey feel free we all are there.

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Thank you :-)

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Welcome! You’ll find a lot of support here!

Stay positive. Try to see this as a chronic disease. Keep busy and keep living your life!

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Thank you. I like being busy, life is so much better when you can be.

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Hello ! I hope you find this group as helpful as I have in the past 8 months ! I was first diagnosed with breast cancer in October 2017 and I too am from the UK , middle aged and have bone mets , but so far have tolerated my meds ( Ibrance / letrozole) and generally feel ok. I hope we continue to do well and that meds become available as and when we need them . x

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3 of my aunts had breast cancer in the 90's, not that long ago, but things have changed so much for the better in that short space of time. Even in the 2 years since my initial diagnosis things have improved.

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Hi Julie and everyone,

I also live in the U.K. and my first post too.

I felt very lucky stumbling on this site and have taken great heart in reading some very uplifting and informative posts.

This is not to criticise the NHS as our treatment is totally funded by the government but I have found out so much more from this site than from my Oncology team!

My MBC is from my first breast cancer (lobular) 28 years ago and was found in December.

I have a mass under my arm, it’s also in my bones/skeleton,eosophgus and stomach lining.

I have tolerated IBrance and Letrozole well todate.

It appears from the posts that in the USA when diagnosed with bone mets you are given bone strengthening shots. I did mention it to my team but was told my calcium levels in my blood were fine. Have you discussed this with your team?Best wishes to everyone.

GiGi

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Hi

I’m in the UK as well

I’ve had 3 injections of denosemab which is a monthly bone strengthening medication..however you have to have a blood test before each injection to check calcium levels..mine were too low this month so couldn’t have it..I take calcium and vit D

I assume you don’t need the injections if your calcium is ok but it’s worth asking at your next appointment

One of the side effects of letrazole is bone thinning as I’m sure you’re aware

All the best

B x

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Thanks, yes I was started on it straight away. My oncologist thinks it's very important and luckily my calcium levels have stayed good :-)

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Thank you for the info. I will bring it up again at my next appointment.

This site empowers you in some way to feel you can ask the questions. It is though such a new drug regime in the U.K. I am not sure the figures are correct but was told it was approx 500 of us currently.

😗

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I've had to go private and I've been told that the regime I'm on wouldn't be available on the NHS in my area.

I didn't want to go private but I just kept getting lost in the NHS system. I actually got my diagnosis after an MRI done by an orthopaedic consultant because I couldn't get an appt with my NHS oncologist. When I did see her,I was her last appointment before going on maternity leave. I was told it could be 8 weeks before I saw her replacement to start treatment as they only had one oncologist doing a single clinic every 4 weeks and he/she hadn't been appointed and the lists were already full. I felt that I just wasn't interesting enough to get seen. I saw the private oncologist the same day and started treatment the following week.

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Julie so sorry to hear what you have been through to get treatment and made me realise how lucky I am. I live in the South East and had no such problems. I was put on a fast track possible cancer system by my GP for my original symptoms last November, a system which I thought was open to all and particularly relevant to patients with a cancer history.

Certainly NICE agreed to Ibrance and letrozole on the NHS at the end of November 2017.

I certainly think if you felt up to it to write to your local MP , it’s unbelievable you could be treated in such a way from a free health system admired around the world. It may help others. You should not have to pay privately for something you have a right to. Hopefully you have insurance to cover it. Thank you for info on the injections.

Keep fighting the good fight.

Very best wishes

GiGi.

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I’m curious what is the South East mean? You are in 🏴󠁧󠁢󠁥󠁮󠁧󠁿 correct? Wow I see how different countries practice medicine. So sad to think that not everyone gets the wonderful treatment we get here. I got all my Ibrance free through the drug companies for one year. But I can’t take it. I’m glad you are getting better treatment.

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South east of England, sorry Clair I had forgotten when writing I was on a UK site.

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My whole journey has been a catelogue of disasters and awful treatment.

I first noticed a crease below my nipple in spring 2015. I saw the gp 4 times and got the all clear from a routine mammogram before I was referred to a consultant. As I had 3 aunts with breast cancer I knew the symptoms but my gp told me that I wasn't the type of person to get cancer and everyone got creases as they get older.

I eventually saw the breast consultant in April 2016 and was diagnosed immediately.

The chemo nearly killed me, My oncologist wouldn't talk to patients without an appointment and the nurse told me to eat marsh mallows. I was so ill. When I eventually saw the oncologist she shouted at me because the nurse had been wrong and she stopped my chemo.

Then after my radiation treatment had finished I saw the registrar who told me I had a 20% chance of dying in the next 5 years and told me a very unsuitable story about the death of one of his patients! This was before the mets had been found!

The hospital where I was treated has a reputation for poor standards and treatment and those are just the high lights!

Not knowing when my treatment for the mets was going to start was the last straw. Luckily I have private health insurance through my husbands job and it's a different world.

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Hi Julie, what a terrible journey you have had. What area of the U.K. are you in?

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I'm in the back of beyond on the English side of the English Welsh border. Though I'm now seeing on oncologist based in a neighbouring authority in the midlands.

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Hi, Gigi!

I was diagnosed with MBC (primarily in areas of spine) in November after 17 years. Also on the Ibrance / letrozole combo with monthly shots of Xgeva. God bless you on this shared journey!

XO Linda in Seattle

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Thank you Linda. I feel really blessed to have found this site and the support everyone gives.

GiGi

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Thank you. I feel really lifted being part of this community and grateful given I am on the ‘other side of the pond’ that I am able to access the love , kindness and information on this site.

GiGi

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Thanks :-) yes I was lucky enough to be put on them immediately, and my calcium levels have been stable.

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Can you give me more info on your injections for bone strengthening. I see my onc in a week and want to find out as much as possible. I had to have my ovaries removed at 42 and had been taking calcium and vit D tablets to counteract bone thinning. I was taken off these 6 months before diagnosis as a blood test showed there was too much calcium in my blood. I now understand this can be a sign of bone cancer spread. I gave up milk and too much dairy years ago on cancer medical advice so a good candidate for osteoporosis.

Very happy to hear you are now in good hands.

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I have a denosomab 120mg injection in my arm on day one of the cycle with a calcium and vit d tablet every day. I've always had a low calcium diet because of lactose intolerance.

Interestingly before my cancer diagnosis I was seeing an immunologist and she found low vit d levels. I now believe that all the minor problems I had with my immune system before diagnosis was to do with the cancer developing.

We have the braca genes in the family, I've been told that one of my cousins had her overies removed as a precaution. I'm waiting for the results of gene testing, but if I have the genes too I think I will have to bite the bullet and have it done.

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The Drs at Memorial Sloan Kettering in NYC recommended monthly Prolia injections at a much more reduced dose than the biyearly dose. It seems to be common practice here in the US

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I can immediately see that there is big differences in the approach :-) what is prolia for?

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Prolia is an injection used twice a year for woman with osteoporosis. It reinforces the bones thereby strengthening the bones.

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Thanks, that's interesting

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It’s used for treatment for prostatic cancer as well

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Wait! Interesting and I gave not heard about monthly injections of Prolia. I gave had 3 at 6 month intervals. First one before I was out of remission and in MBC. Then oncologist said it was probably best thing I did to protect my bones. ( I had taken Forteo fir two years previously). So I thought, okay then I get second shot. Now after third shot I am concerned about jaw deterioration. So is Slone saying this reduced dosage is better for jaw protection? If nit what are thoughts? And what is dosage? I am intrigued and need more info !

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The increased frequency is strictly for metastatic bone disease. I don’t know their exact protocol but you could probably google it. The jaw necrosis is a risk factor on Prolia but only if there’s an insult or injury.... tooth extracted etc.

Hope this helps!

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I don’t think that risk factor is totally accurate as I just had dental consult last week on this

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GiGi, hi and welcome. I would like to know does your stomach bother you since it’s in lining also esophagus? I have not seen to many that have it there. Thank you 🙏.Oh and how did they find it in stomach?

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Last September I started to get acid reflux. I thought it was due to rich food and too much alcohol! Occasionally it would make me physically sick. A little tummy pain but nothing to complain about. In November after seeing my Dr she referred me to a hospital for a gastroscopy/endoscopy. Originally they thought it was probably H Pylori but further testing on samples taken showed it was lobular cancer mets, a mass in my axillary,peritoneal and serosal deposits and bone mets throughout my skeleton.

I started Ibrance in January after they had successfully treated the HPylori.

You are quite right it’s not a common place to find breast mets.

All my initial symptoms disappeared after HP treatment.

Thankfully I seem to tolerate Ibrance well although I am experiencing considerable hair loss. I have told very few of my diagnosis, so wonderful to have found this forum.

GiGi

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You are very knowledgeable in medical terms. Are you a Nurse? I’m glad you are doing better. The reason I ask is I have always had stomach problems so I get concerned when I have them. Yes I took Ibrance for 3 weeks and my hair loss was horrible. I couldn’t take it because my blood work went crazy. I’m glad you found us, we talk about everything from soup to nuts. Don’t be shy ask anything and you will find out. Again welcome.

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How did they treat the h pylori?

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28 years wow! I thought 17 was a long time. I hate to keep asking you things but what type do you have? I’m Her2 Negative. Thanks again.

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I can really see that! I'm so grateful that everyone has made me feel so welcome.

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Welcome to the group, Stay connected and use all the resources you can. Best of luck.

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Thank you :-)

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Hi Julie

I also live in UK

Diagnosed with MBC in April after clear for 24 years..my metastasis is widespread in bones with a few small pleural nodules

After the initial shock and ranting I’ve taken letrazole and Ibrance

However I had to stop Ibrance after 2 weeks due to low neutrophils and red blood cells..restarting Ibrance lower dose today and hoping my body deals with it

There are new treatments all the time so we have to keep taking the medication

B x

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I can imagine your shock after being clear for so long. I was still sort of expecting it. Exactly 2 years after my first diagnosis.

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I hope you are finding inspiration on this site.

I will have everything crossed your bloods behave on the lower dose.

I was lucky enough to be on Aramidex for over 12 years with no problems. A new Consultant decided I should come off it and here I am, I appreciate his point of view but wonder...

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Welcome! I also have plural nodules, and effusion. I had to stop it also and now take Faslodex injections for now. You in England have it return so late, you are 24 and the other lady 28 years later. My that’s a long time, I’m so sorry. You sound positive and that’s great 😁.

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It’s very rare to have mbc after 24 years..especially as original tumour was tiny..no lymph spread and I was told I was going to be ok

It’s such a horrid nasty disease and I’m full of hate but I’ll just take the meds and carry on..like the rest of you ladies out there

B x

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At least I know my survival has been a bit of a miracle for the last 28 years. My breast cancers were 7 years apart and on both occasions I had radical mastectomies, chemo and radiation, both times it had spread to my lymph glands.

First cancer was lobular and second ductal.

I had my ovaries removed at 43 on the advice of an American lady I met by chance, herself a breast cancer survivor, who was on vacation in UK but worked for a prominent USA cancer specialist. She suggested ovary removal and had undergone this herself.

My UK doctors refused but after researching USA info I went ahead when the surgeon she suggested was visiting the UK and on meeting him discovered he was British! I genuinely believe although it was horrid going through the menopause so early it has contributed to my longevity on this journey.

7 years after my second breast cancer I was found to have lung cancer in my left lung. I had a lobectomy and chemo as this too had spread to lymph glands but no radio because of the previous treatment on that side.

I feel very blessed to still be here, in spite of my grim prognosis each time and to have seen my children grow up and have grandchildren.

I had to force myself sometimes (and particularly in the middle of the night) to have positive thoughts. I personally found by going into my worst fears, imagining the worst and then putting those negative thoughts and fears in a box ,shutting the lid tightly really helped me.

I have kept my diagnosis this time to immediate family and a few friends as I need to keep my emotional strength up. MBC is not something , unless you have experienced it in some way something most people understand. The few I told at first I ended up comforting!

To you and everyone who posts, thank you. This site has become a beacon for me.

GiGi

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Try L Theanine ! 200 mgs .First thing in morning on empty stomach. Helps with attitude!!

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Welcome! This board is like a second home to me. I try to check in every day to see what everyone is up to. I was dxd 2014 w lung Mets. Now on Ibrance and being switched to Faslodex instead of letrozole for some activity on scans. It makes a huge difference having women (because I haven’t seen any men in the board) who are walking this walk with you.

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I've felt very alone since my diagnosis in march. I have lots of good friends who are supportive but they aren't going through it and It's difficult to explain. I'm sure lots of contributors to this site will understand what I mean.

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You are not alone anymore. We all get it. That’s why we’re here ❤️

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😊

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You are so right. Most of my friends are like Oh your done with Chemo so your all better? I’m like what? but then realize they have no clue. Of course family understands because they are living it with you as is the women on this site. One friend thought the same until a close family member was diagnosed with stage 4 bone cancer.

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I think it's because friends and family so desperately want us to be better. When the treatment is over they think we will be back to our old selves. They don't understand that it doesn't work like that.

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Your right, that’s because most people don’t get Mets. Most people usually just get a smaller stage and do get cured. When I tell them I will be on something until a cure comes there like why? I don’t want to be rude so once I explain it usually registers with them and they say I’m sorry 😐. I’m like it’s okay I will live to see and have the cure medication. I always felt I would live to see a cure for some kind of cancer. I’m thinking that will be Leukemia! I’m hoping ours will be a close second.

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Part of my problem is that I look so well. I look healthier than I have done in years. I get tired more quickly but that's all, but there is a lot going on in my head and I have to be careful what I say so I don't upset people. So many people ask me how long I will be on the treatment. I say until it stops working and leave the rest for them to work out, not everyone does :-)

There is a cure there - not far away and we are getting closer even with the current meds. People just don't understand what is like to be waiting :-)

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Thank you for your response. I have told very few and only those who need to know because I have not known what to say.if I need to as my hair is giving me away , I will use those words.

GiGi

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I started to lose my hair and it upset me far more than the diagnosis. I've realised how vain I am! So I thought I'd try a caffeine shampoo and it's definitely slowed the hair lose. My hairdresser saw the initial amount of hair loss and is very surprised that the loss has slowed, Though my arms and legs are virtually hair free again

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Haven’t heard about caffeine shampoo. More info!

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The theory is that the decline in female hormones after the menopause leads to a build up of testosterone in the hair follicles causing hair loss, which the caffeine in the shampoo counteracts.I have no idea about the validity of this claim, but it seems to work for me. I'm in the uk and get the shampoo from larger branches of Boots but it is cheaper on Amazon.

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Unless you are in the medical field or have mbc most people don’t know that stage 4 is mostly incurable. Yes there is Ned or remission but that’s rare, if you have it in more than one place. I’m like everyone else here hoping that magic bullet is right around the corner. One pill or treatment and nothing more to take. Until then we take what we have and do what we can. I’m not going to take something that makes me so sick every day I can’t get out of bed. I do wish I could have taken Ibrance but there are other meds. Those of us who are Her2 positive or negative can take more than say triple negative. So I feel blessed if I have to have this it’s Her2 Negative.

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Hello, Julie!

Welcome to a great support group! You are in all of our collective prayers!

XO Linda in Seattle

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Thank you :-)

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Welcome to the group. Was re-diagnosed in 2016 with Mets to bone. Was disappointed as I was ok for four years. On faslodex and ibrance in hope it works as long as possible. Good luck to u and best wishes for continued good news.

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Thank you :-)

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Hi again

I have private insurance..Bupa..so there was no problem getting Ibrance..however my oncologist did say it was available on NHS anyway.. I live in Nottingham

I can’t believe you had a problem obtaining Ibrance that is so unfair and discriminatory to ladies who just happen to live in a particular area

Sorry for rant

B x

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I'm not that far away, I'm over on the the Welsh marches. Yes, I can get the Ibrance but not faslodex and denosumab together, which the oncologist thinks is the best combination for me. Though I am now seeing an oncologist in a different health authority area. With the different health authorities, treatment availability is such a lottery, so I'll join in with the rant! :-)

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Wow just saw this, you can only get one kind? I take Faslodex but my wbc won’t let me take Ibrance. Wish you the best. That’s 😞. I will pray for you.

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