62233members
327606posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Bone mets - please join in

Member

Re: Bone mets - please join in

hello JWD,

 

Many thx for sharing your journey. It must have been a shock to find the new 'lump'.

 

As with us all, the phrase scan-xiety is just the pits. Trying distraction techniques is what i do, but it does not always work! Thinking of u.....not long now...

hugggs,

silver..x

JWD
Member

Re: Bone mets - please join in

Hi silverlining
Yes basically I had mastectomy 9 years ago. Grade 1 estrogen poss no lymph node involvement. I had 2 years zoladex and was on tamoxafin for 5 years.i had a saline expander implant fitted. At the beginning of this year I felt a hard lump almost like a piece of plastic along my mastectomy scar near to were I had breast dimpleing last time. I didn't even panic as I thought I've had mastectomy.How naive was I? I'd got my routine appointment the next month so I thought I'll mention it then. The breast nurse reassured me and said she thought my implant had ruptured.So then the scans started ultrasound which showed nothing then Mri which my onc confirmed rupture but was still unsure about lump I asked if she thought it was cancer she said she was unsure and it could be a crack in implant..Im convinced she knew there and then but didn't want to worry me. She did a biopsy and I had results a week later which confirmed grade 1 and estrogen positive exactly the same as before. She did a blood test which confirmed post menopause so started me on Anastrazole. She requested ct and bone scan to rule out Mets. Ct was clear but I'm still waiting for bone results should no more on Thurs. I'm booked to have lumpectomy on 30th July and my implant exchanged then she said definitely radiotherapy but unsure about chemo about chemo. Xx
Member

Re: Bone mets - please join in

dear funny face,

 

That must cause so much pressure at a time when you least need it......

 

How long have you been on your 'secondaries' journey?

 

I'd no idea that you were from across the pond......is it very hot there, too?

hugs,

silver..xx

Community Champion

Re: Bone mets - please join in

Moijan, Not all USA ladies get these drugs ! Yes some insurance companies pay. Others have a huge copay. I'm on Medicare which covers 80% of infusion drugs. You pay for Medicare and then you need a secondary insurance to cover the 20%. Prescriptions fall under your prescription plan which you pay for too. All of this coverage cost me $450 a month for me and $450 for hubby. For prescriptions there is a copay. To get palbociclibthe copay for my first month was $3500. Then $800 a month after that. I was able to obtain a grant to pay my copay. When my grant ran out I had to apply again. There was no money left for any grants for metastatic breast cancer. All the funds were used up. I had to apply to the manufacturer "Pfizer" for assistance.Luckily Pfizer agreed to sponsor me for one year. Sadly then the drugs quit working , I only used 5 months of my assistance. Then it was onto the combo I'm on now. This sent me back to finding a grant again. Luckily there was some funding open for metastatic breast cancer again. I was given a $8000 dollar grant for my compacts. I only have enough money until August or Sept. Then I have to reapply for another grant, if no funds available we will try the manufacturer. If they won't give it to me then I will have to switch drugs. I can't afford $700 dollar copay plus the copays on my other medications plus hubby 's copays and the insurance premiums. Very few people here get these drugs completely covered by insurance. FF

Member

Re: Bone mets - please join in

I already know that some of you have a very negative opinion on stats. but these are relevant to the current chat:-

 

I can't share the Guardian article but it states that the UK cancer survival rates trail 10 years behind European countries...x

 

 

Member

Re: Bone mets - please join in

Hi JWD,

 

I like to form a 'picture' in my mind. am I right in thinking that 'these' are your first secondaries after 9 years? Hoping you have love and support around u....xx

Member

Re: Bone mets - please join in

Thanks for the info moijan.

I’m really fuming about this. I’m brand new to secondaries so I’m probably being naive, but is there nothing that can be done?
Has anyone ever started a petition? There seem to be petitions for everything now.

What about support from local MPs?
Surely this just can’t be right.
I had fec-t chemo last year and I’m eligible. It’s just ridiculous.

In my opinion, there is a lot of wasted money that should be redirected into healthcare.

I watched a prominent UK liver mets doctor on Twitter talking about some life saving/extending treatments that our government won’t pay for, so most of his patients are either wealthy or traveling from countries like Germany, where their governments are happy to pay.

He has to turn people from England away, even though he could help them. He works for the NHS but these treatments, such as SIRT and chemosaturation, he carries out privately.

If we can’t have the same standard of care as other places in Europe, then I believe the government has a responsibility to be honest and let people know that their lives are only worth a certain amount.
That if you want to be sure of receiving any treatment you might need, then you need to take out private insurance.
Because if their lives depend on being able to access life saving treatments on the NHS the answer could very likely be NO 😡
I was definitely naive when it comes to this. I thought private healthcare was more about waiting times.
In hindsight, I obviously very much regret not taking any out.
Xx
Community Champion

Re: Bone mets - please join in

Ftf

 

i have battled with Nice about these drugs....they told me that the trials showed no evidence that they worked with people who had had chemo before.that was because chemo treated ladies were excluded from the trials!)

 

 

actually there IS  evidence now that they do  (in. The USA).

 

Publicising the drugs initially,  said that they were sooo pleased to be able to spare future bc sufferers from going through chemo...and giving extra years to these people, So they  can see their kids, grandkids grownup.

 

I wrote and said that there are thousands of us ladies, who now felt disadvantaged...who’s drugs eventually. Run out and prospects were poorer. That’s when they wrote and said there is no evidence they work for Us!

 

You can read all about their decision making on the Nice website.

 

i am afraid it’s all down to money. The USA ladies get them as their insurance pays!

 

much love to you

 

Moijan..

JWD
Member

Re: Bone mets - please join in

Thanks silver lining will keep you posted.xx
JWD
Member

Re: Bone mets - please join in

Thanks Feel the fear for your support and advice hopefully bone scan will be clear. I was on zoladex injections after my mastectomy and I could get quite weepy and very fatigued but you just put it down to everything you have been through.My emotions were all over the place at times with highs and lows.xx
Member

Re: Bone mets - please join in

Weird....I've just been reliably informed that my oncology's department protocol will be changing...Denosumab will be administered 1 x every 3  months! Not sure i rest easy with this cut back......Any thoughts...x???

Member

Re: Bone mets - please join in

Hi JWD,

 

Snap!....being very new to the forum. There is a wealth of knowledge here...best of luck with your bone scan...do let us know.....x

Member

Re: Bone mets - please join in

Thanks for all of this Nicky. I appreciate it so much. I’m building up a folder. My oncology appointments are very long. 🙄
I’ve sent emails off to a couple of renowned liver met specialists and have had replies stating that they agree with my current line of treatment.
Im very keen on the idea of surgery of some sort or radio ablation maybe. I’m terrified about this lesion that’s next to my portal vein. I’m obsessed with it. It’s tiny now but if this treatment doesn’t stop the growth it could end up being a huge danger to me I think.
Although my oncologist hasn’t mentioned anything about it.
How absolutely terrible that chemo gave you heart failure. I can’t imagine what you went through. You’re obviously made of tough stuff.

I’m confused about my pathology report too. That’s something else I need to clear up at my next appointment.

Angela xx
Community Champion

Re: Bone mets - please join in

Hi 

FtF, I really hope you don’t have to battle to get the right treatments although what you have had to deal with for your sone might help you. A good friend of mine, who has had bone mets for over 15 years, also has a disabled sone and has the bit between her teeth for her own treatment as well. All I’d say is make sure you educate yourself about what treatment is right for your type of BC and be prepared to challenge any decisions you don’t think are the right ones. Also be prepared to ask for a second opinion if you don’t agree with the decisions by your own oncologist, a major research hospital will have a wealth of experience that some more local hospitals don’t. All I have done is make sure I know what the next step will be and that has helped me take some form of control, which is what we all lose when we’re plunged into this nightmare. I was like FF with my primary, as most ladies are, you don’t seem to have the time to consider what might be right or wrong and you accept every word your oncologist tells you as you just want to get the cancer out of your body and move on. With secondaries it isn’t going to be gone, it’s with you and you will have more than one treatment over the years so I learnt to know what was coming next.  In fact with my original secondaries diagnosis I probably got it wrong and shouldn’t have had chemo but stuck to hormonal treatments but the thought of the hormonal taking longer to work than chemo was enough to convince me I should go the chemo route. Great news it stabilised the bone mets and got rid of the local recurrence but absolutely bad news it gave me heart failure! This then compromised my treatment options 5 years later when liver mets were also diagnosed. Luckily I was able to get excellent help with the heart failure and get it back to full working order but at the time I thought I was a goner, stress and anxiety doesn’t even cover how I felt. As to why us long term survivors can’t have the new drugs through the NHS it is unfortunately down to cost. Obviously if you have private health cover, like is needed in the US, you can get them but their cost effectiveness isn’t proven yet so NICE won’t put them on the accepted list for all patients. However the new drugs are always given in addition to a hormonal drug (correct me anyone if I’m wrong) so it is difficult to prove how much they enhance the effect of the hormonal in patients who have had more treatments as the drug trials have so far only taken place on 1st line patients, but hopefully in future they will be introduced as a standard for all long term survivors. Even without the newer drugs I have had 5 years out of arimidex originally and about 18 months out of letrozole (which was by then my 4th line of treatment). With your pathology report it sounds like to are hormone positive but I’m not sure about the percentages that are quoted. Usually ER and PR are marked out of 8 so 7/8 is highly positive, maybe the percentages are working out something else as 7/8 in my mind would be between 75% and 88%? Tamoxifen does work in a different way to the AIs (aromatase innibitors). I don’t think tamoxifen worked for me after my primary, but I could be wrong, after all my recurrence wasn’t for 5 years but by then I had my periods back which I’m sure didn’t help.

Hope all this helps with information gathering 😊this is what I’ve done over the years, find out from here as it’s far more up to date with opinions from oncologists all around the country (as we are all around the country ) so instead of getting a second opinion I’ve often had 10 opinions when I’ve asked a question which is great. Long make we continue to share and help others.

Nicky xx

Member

Re: Bone mets - please join in

Hi JWD.
Sorry that you’re in the waiting game. It’s the worst of feelings isn’t it, and we over think every single thing anyone who works in a hospital says to us.
It’s impossible not to.
I’d think your scan has probably been marked as urgent just because of your recurrence. I don’t think they could be keeping anything from you if no one has even looked at it yet.
I know it’s much much easier said than done, but do try not to worry. I’d say they’re just being cautious giving you the bone scan. If your ct scan is clear I’d say it’s looking very positive for you. X
JWD
Member

Re: Bone mets - please join in

Hello I'm new to this forum too. You have every right to be emotionally worried. It must be hell for you. Could you ask for more scans to put your mind at ease. I had mastectomy 9 years ago estrogen positive and had zoladex injections and tamoxafin. Recently been diagnosed with local reoccurrance I had a lump along scar.its still estrogen positive and ct scan clear. I've started taking anastrazole but I'm waiting for bone scan results I rang yesterday and nurse said the results are marked urgent to be looked at as they hav'nt been reported on yet. So I've gone into complete panic. I'm due to have lumpectomy and implant removed on 30th July but unsure of the plan depending on bone scan results. I've got to ring oncologist Secretary on Thursday. I'm usually really good at appointments and ask everything but I failed to ask would the operation still go ahead if the bone scan showed mets. I did ask nurse yesterday and she said she wasn't sure about other options but you know that feeling when you think they are keeping things from you! or is it just me and my mind working overtime.
Community Champion

Re: Bone mets - please join in

FtF, I take the blame for it all! I was too trusting and naive! I was raised that you say Yes Dr., thank you Dr. Never that naive again! FF

Member

Re: Bone mets - please join in

FF, that’s a very shocking story. We’re brought up believing that doctors know best. Most of us just trust them, especially when we’re in a life or death situation.
I was very worried my periods didn’t stop until after chemo 5 and continued on tamoxifen. I was told not to worry. 🙄
And now I’m still worried. I’ve just had another heavy period. I’ve only had one zoladex injection, but it obviously hasn’t worked straight away.

Community Champion

Re: Bone mets - please join in

Nicky and FtF, When I first started with mets I had lupron injections to shut down my ovaries. At 4 months tumors were still growing. Oncologist decided I wasn't hormone positive enough and that no hormonal would work for me. I went for a 2nd opinion and that oncologist felt lupron wasn't enough bc it only shuts down your ovaries and not your adrenal glands. He said if I ever wanted to try hormonal and my Inc wouldn't do them to come see him. Take a big leap over 10 years of chemo and palbociclib came on the market. I wanted to try it. My onc said, NO! He said he would only give it to me if I had my lung tumors biopsies again. He said we needed more evidence it might work. We got in a big argument. I said I wasn't risking having my lungs biopsied again. They were in great jeopardy of collapsing 10 years before, so I wasn't risking it. I said when you give me chemo it's a game. You don't know if it will work so I want to take a chance and see if this works. He finally agreed I could try it, but with a big attitude! Also proclaiming it would never work. Well in  Oct I had a scan and was stable so we continued. In Dec he quit. In April was when the scan told me how great it was doing. He never got to know! Now I'm on E & E, another hormonal and its working too. Pablociclib was my 6th line of treatment. I look back now since I'm doing so good on hormonal and wish I had tamoxifen after my primary. At the 7 year Mark I asked him why I didn't have it and he said bc you weren't ER positive. Then he looked it up and said OH, yes you were. Then he said it was bc he decided it wasn't protocal for my age and no lymph nodes. My surgeon was furious when I told her all this when I had my port placed. She said I should have had tamoxifen and I probably wouldn't have mets. She said but no sense crying over spilt milk! So please fight for whatever you think you need. I thought he was doing whatever I needed. Obviously he wasn't!!

Member

Re: Bone mets - please join in

Thanks for that Nikki, my original diagnosis was a small lump at side of my breast, cancer in 5 of 7 lymph nodes and sentinel node, as you say hopefully more answers tomorrow x
Member

Re: Bone mets - please join in

By the way no one has ever mentioned how strongly ER I am. Last week I requested my original pathology report from last year’s mastectomy and it seems I’m 7/8: 34 to 66%/ strong. Whatever that means.
I know the tamoxifen clearly wasn’t working. 🤔
Member

Re: Bone mets - please join in

Thank you for taking the time to explain HER2 for me Nicky. There’s so much to get my head around in a short space of time. My oncologist probably shouldn’t of suggested HER+ would be the best outcome.
Thank goodness for this forum. 😳 imagine the state I could of got myself into without you ladies. It’s slightly worrying that I need to come here for fact checking, but I’m extremely grateful that I can.

I think it’s absolutely disgusting that you can’t have access to these new drugs. Why won’t they allow you to have them? They worked for FF for 21 months. I can’t see how they can justify not allowing them.
I’ve had to battle for my disabled son for the past 27 years. I’ve got a feeling getting access to the treatments I might need over the coming years is also going to turn into a battle. At least I’ve got practice. I just hope I’m as good at fighting for myself as I am for him.
Community Champion

Re: Bone mets - please join in

Hi FtF

I agree with what FF has said.  I am also HER2 negative and have been living with mets for over 10 years now.  After one of my liver biopsies it was decided I was HER2+ but in hindsight we all realised that it was so marginal I wasn't benefitting from any treatment that was specific for HER+. I have however always benefitted from hormone treatments (as well as chemo when I've had to have it)  There's alot to take in when you are first diagnosed with secondaries, far more than with primaries as other treatments are more appropriate and of course it is long term rather than a set amount of cycles.  I only understood what HER2 meant when I was investigating it for myself.  From what I understand we all have HER2 receptors on our BC cells.  However it is only when these are over-expressed (ie there's too many of them) that you are treated with a Herceptin related drug.  In the same way if you do not have a high level of ER or PR receptors you are unlikely to benefit from hormone blocking treatments.  In my case my test results came back as possibly HER2+ so they conducted another set of tests at gene level and this still came back as marginally over the cut off point between what is HER2- and what is HER2+.  I hope this explains it a bit and may make you realise that you don't need to be HER2+ to get excellent treatment.  Being HER2+ means you have another set of receptors that need blocking.  In fact the press always seem to pick up on Herceptin/HER2+ as alot of research has been done to level the playing field between HER2- and HER2+ however there has been more recent drugs that are now being used to boost the effectiveness of hormone treatment.  I, along with other long term secondary BC survivors, can't actually have these newer drugs (in the UK/on the NHS) as they are only for the first line of treatment (ie the first hormone treatment you have after your mets are diagnosed) so we haven't benefitted from the enhanced performance they give.

As to how you are feeling emotionally as I said earlier there's alot to take in and suddenly being plunged into the menopause doesnt help!  I had zoladex injections for 2 years after my primary diagnosis and I do know its not much fun! For ovaries to be shut down almost immediately is difficult especially with all the other emotions going through your head.

 

Member

Re: Bone mets - please join in


I think my emotional state might have something to do with the zoladex injections I’m on. I wonder if anyone else has experienced this?
I know I’m going through a difficult time but I’m genuinely not one for crying. Since I started the injections I seem to be on the verge of tears constantly.
Member

Re: Bone mets - please join in

Thanks for the advice and tips FF.

I started running about 8 weeks ago so I’m hoping this helps. It’s an nhs thing called couch to 5k. I can manage about half an hour running every other day now. I started this before my secondary diagnosis just to get a bit fitter. Who’d of known how important it would turn out to be.

I’m feeling optimistic about the meds, improvements at 6 months would be wonderful. Maybe I’d be eligible for surgery then.
Community Champion

Re: Bone mets - please join in

Feel the Fear, I was on letrozole/palbociclib for 21 months. My first scan at 3 months was stable. The second scan at the 6 month mark showed lots of improvement. Letrozole killed my knees with pain. Palbociclib made my leg muscles weak. I had some friends this happened to, too. I would suggest doing some leg strengthening exercises. My legs have gained some strength back, but not all. This combo worked 21 months for me. FF

Community Champion

Re: Bone mets - please join in

You are welcome. I was hoping you would log back in soon. I wanted to ease your mind some! FF

Member

Re: Bone mets - please join in

Ahh FF, you’ve got no idea how you’ve brought me to my senses. That’s exactly what I needed to hear. I thought you were her positive as well.
Thank you so much for letting me know. 😀

I think my oncologist was referring to me being able to have herceptin if I’d been positive.
You’re obviously doing very well without it. Especially with your recent good news.
Thanks again FF. I might get my appetite back enough to have a late lunch now. 👍
Community Champion

Re: Bone mets - please join in

Feel the Fear, I was told ER+, PR+ and HER 2- is the least aggressive. Then ER+, PR -, HER2-.

 

I was told I was ER+, PR- and HER2-.  Then my new oncologist wrote on a letter I needed that I was PR+. I questioned her about it and she said that there was no difference in treatment and that being PR+ would actually be better. Lol still never gave me an answer on it. 

 

I have had mets for almost 13 years and I am HER 2 negative!!!

 

FF

Member

Re: Bone mets - please join in

Thanks for the support ladies.
Annie, it’s brilliant that your mets are shrinking.
I would love to have surgery at some point. My biggest lesion is just over 1cm. My oncologist said it was over 2 but the radiologist said no, much smaller. I have 7 or 8 in total. Most are that small they’re barely visible.

Oncologist wants me to try these meds before considering surgery. I noticed looking at my scan that there’s one lesion quite close to a portal vein. 😳 that’s giving me sleepless nights.
I think I just need to give my head a shake. I’m usually so positive. I’ve even cried on the phone to my Mam this afternoon and now I feel terribly guilty, she’ll be worried sick. 🙄
Member

Re: Bone mets - please join in

Ftf, sorry it wasn't the news you wanted. Try to focus on the positive- you may be her-neg, but you are still er+, which from what I've read is probably the most important element in terms of possible treatments. Totally understand your wobble, I have them frequently and they come in every shape and size! Sending hugs and best wishes for when you start treatment.xx
Community Champion

Re: Bone mets - please join in

FTf ,

 

fingers crossed for the ibrance, seems to be getting really good resultsxx Sorry I have no real knowledge of herceptin, but Ibrance hopefully will work well for you.

 

Moijan

Member

Re: Bone mets - please join in

.

Community Champion

Re: Bone mets - please join in

Hi Feelthefear, how awful for you. I really sympathise with your situation. My secondaries are in both lungs, and I am on Letrozole and Palbociclib, and have been for over a year. The good news is that I have responded well to this regime and my tumours have shrunk. So..yay me, and hopefully....yay you! I have a friend who had a 7 cms liver met, and on this same regime it is now reduced and she is on the surgery list. I hope that these two examples give you a bit of a lift. 

My wonderful Onco does not place undue importance on receptors , but looks at other indicators as well. His reasoning is that it gives rise to anxiety, and so long as other blood markers are good ( neuts, white blood, bone marrow) and I feel 'well in myself' we just mosey on. At the moment I am very happy with this and my motto is to never ask a question I don't want the answer to! But blinkered, perhaps, but it is a coping strategy that has worked well for me so far. 

Wishing you every bit of good luck. 🍀🍀🍀. X

Member

Re: Bone mets - please join in

Afternoon ladies.
My oncologist just rang with my biopsy results as they weren’t ready for my Friday appointment.
The receptors haven’t changed since my original diagnosis. So the liver bc is oestrogen positive, her negative. My oncologist said it was worth testing to see if the her had changed to positive. He said this would be the best outcome.

Now I’m absolutely devastated that I’m still her negative. I don’t know whether I’m just looking in the wrong places, but everyone past the 10 year mark seems to be her positive. I’ve totally wiped myself out. I’m having a proper wobble, I wasn’t expecting to react like this. 😳
I started letrozole on Friday and he’s starting me on palbociclib on Monday instead of Friday as originally planned.
Member

Re: Bone mets - please join in

hi riversidedawn,

 

I'm a newbie to the forum but 3+ years in with bone mets.

 

My oncologist has said he'll only give me a CTscan torso once a year & I'm emotionally troubled by this; especially knowing that many of us are asymptomatic when new mets are found....sorry to go on.....bee in bonnet!! x

Community Champion

Re: Bone mets - please join in

Hi ladies, I haven't been on for a while. I switched off notifications as can't keep up with all the messages taking over my life!!!

 

A little good news story for you, especially those struggling. I was diagnosed with bone mets Christmas 2017 and have been on Palbociclib / Letrazole plus Zometa and Zoladex since January.

 

Had my first 3 month MRI scan end of March which showed reduction in all three tumours (vertebra, sacrum and pubic bone) and the larger vetebra one has started to re-build itself. 

 

Well, just had the results from my 6 month MRI which shows stable although there is some activity, but no growth and no new tumours. 

 

It is really reassuring to have these regular scans as it makes the stress of living with the diagnosis and hardship of the side effects so worthwhile. x

Member

Re: Bone mets - please join in

I certainly felt better when I had a treatment plan in place. I was diagnosed in March breast lymph nodes and bones all at the same time. No surgery.Zometa Anastrozole Ibrance and Calcium tablets. First scan was a few weeks ago results on August 6th (delay my fault as I’m away). Feel fine so far and breast pump seem to have all but disappeared. I know it’s hard to believe in those horrible early days but most of the time I accept the situation. I imagine we all have pit moments. I think it’s also important to like and trust your team. I love mine but I can really understand why you’d swap if you didn’t. It does seem that treatment varies. We’re all treated as individuals. Best wishes to everyone coping with all this. We’ve been in Devon for a week - baking hot! We’ve had a lovely time but we are a little worries about how our garden will be when we get home. We left it in the hands of our son!
Community Champion

Re: Bone mets - please join in

Hi Zana

Sorry you have to find yourself in the place no one wants to be but you have come to the right place for advice and support. We have all experienced that absolute shock you get when you are told you have secondary BC (or mets as we tend to call it) so we all understand how you are feeling right now. The main advice would be don’t Google anything! Statistics will be out of date and there’s a lot of info out there that is also out of date. I have had bone mets for over 10 years now and I don’t think any statistic has been changed in that time despite new treatments being used. 

Bone mets are usually treated with a bone strengthener which can be an injection (Denosumab) or intravenous (IV) such as zometa and occasionallytablet form. You will then also have another treatment based on what type of BC your primary was and this will generally be systemic ie it will treat any areas of BC in your body which is why the operation to remove your lymph nodes is not taking place right now. This could be hormone treatment or chemo or Herceptin depending on what your primary was.

Good luck with your appointment tomorrow and feel free to ask any questions you might have on here, there will always be someone who can help. Also, once you do get a treatment plan in place you will hopefully feel more able to cope as it does make you feel something is being done whereas when you are left in limbo not knowing it preys on your mind.

Nicky x

Community Champion

Re: Bone mets - please join in

Silver, Your forever home sounds fantastic. I love my hubby but some days I wish we could have three homes. Mine nice and tidy. His could be a typical messy man cave which I will stay out of! Then a house we share. I've often wished on our property that we could have our main house and then a little place for each of us. I better play the lottery. We needed rain too, but 10 days in a row is a lot. The trees and plants look happy again, after the rain. FF

Community Champion

Re: Bone mets - please join in

Zana..was sorry to hear your news..what a shock!

 

my primary was diag in 2001 and I had 12/13 lymph nodes involved, which they removed. I then got an infection around my breast implant and ended up with lymphoedema.....I’m thinking that maybe in your case they think it’s less traumatic to treat wholeistically..I have noticed practice has changed during the years since my intitial treatment...

 

when you see see them again you could ask them to explain whyxx

 

my bc mets were found in 2013 to liver and bones...I have it in my spine, pelvis and ribs...but have Zometa, which they tell me is keeping the bones stable.

 

love and best wishes

 

Moijan💚

Member

Re: Bone mets - please join in

hi tatyana,

 

I'm literally turning green with envy!!! I'm losing plants and tis' breaking my heart. My garden is my pride and joy!

 

'They' keep dangling the proverbial carrot in saying its going to rain 'today' and not one drop of the wet stuff!!! I really miss the rain....for emotional reasons, too.....can't believe this heat wave!!! Bizarre!!!

 

wishing u a relaxing Sunday..xx

Member

Re: Bone mets - please join in

Silver, I don't want to make you jealous, but we had some proper rain on Friday. The garden just loved it!
Ff, please send us some of your rain, you don't want it but we do! I hope you get some sun for your beach trip.
Member

Re: Bone mets - please join in

hello dear funny face,

 

My 'forever' garden is in my 'forever' home.....its my turn of phrase......after my divorce, I went a-searching for a tiny bit of England to call my forever home.........its mine till the end of my time.....just a turn of phrase....

 

Did i hear the word 'rain'......nae one drop here...its upsetting me!!...boo hoo ...hugs...oo

Community Champion

Re: Bone mets - please join in

Ok I have to ask. What is a forever garden? I'm guessing a perennial garden. Lol if it is mine is basically dead. It did well for many years and last year wasn't doing well. This year up popped a ton of gristle in it.I had to pull them out with leather gloves. Two were is later they were back. Same process and now they are back again. Decided to just chop it all off. This is right against the front of my house. I figure next year I will have to rip it all out. Might turn into two bushes and some potted plants. 

 

Raining here for the next 10 days. I was supposed to go to the beach this week. Quite bummed my only time this year at the beach and its going to rain for it. 2018 hasn't been cooperative for having fun! 

 

FF

Highlighted
Member

Re: Bone mets - please join in

 
Member

Re: Bone mets - please join in

Hi Zana,

 

Sorry to hear your recent news. 3 years plus ago, at Dx, they found mets in my lymph nodes so axilliary clearance and a week later mets on both hips.......hang on in there....hugs..

Member

Re: Bone mets - please join in

Hi Zana,
Sorry you've had this diagnosis so soon after your lumpectomy, you must be feeling really battered. You've come to the right place, if you browse through the recent posts on this thread you'll find some really encouraging stories.
I can't help you myself specifically about bone Mets, as mine are in lymph nodes, lungs, etc but none diagnosed in bones yet (doesn't mean they ain't there!). But the people here are very welcoming and supportive no matter what your particular diagnosis is. One thing I've learned is that we're all different and none of us is a statistic, so try to ignore statistics and concentrate on you as an individual.
I hope you'll feel better when you've seen the team, it does get easier when there's a plan. Best of luck and big hugs!
Member

Re: Bone mets - please join in

hi ramade,

 

Thx for answering. I'd never heard of this particular type of mets. before. I guess 'it' showed up on a CT......thinking of you till you wait for the 8th. Waiting is just 'horrid'!!! 

Hugs to you, too,

silver...xx

 

Hoping you have family & friends around you.....x

Member

Re: Bone mets - please join in

Hi Silv, well soft tissue cancer is when it's not in an organ but just loads floating around. mine is in my neck and chest. Don't know what they're going to try next but will find out on the 8th August.

hugs to you

Ramade xx