Hi. New here. Anyone had a positive experience with Zometa and letrozole. Scared. Bone and lung mets. Feel quite well at mo but only had zometa once and had ‘flu like’ s/e’s from that. Nine yrs since primary dx with bc. Is there life after mets? Be grateful for any advice. Thank you.
Sorry for late hour. Don’t expect any replies in night. Just still trying to get head around things. Just had baby granddaughter too. Sorry again.
Hello Carrie
Welcome to the forum …it’s scary at first with the dx but it becomes the new normal way of life!!
I did eleven years from primary and felt like I had been hit by a juggernaut when given the dx!
Letrozole is the first line treatment and zometa for the bones …I have been on this since October 2015 and many ladies here continue with this treatment for years with a good quality of life.
There are lots of threads here to work through and even join the secondary private forum for gardening club, book club etc etc .
Carolyn xxxx
Hi Carrie.
You have come to the right place for support and practical advice and sharing of experiences. All of us with mets know exactly how you are feeling right now, which most friends and family will have no idea about. There is a very active thread called Bone Mets please join in which is worthwhile reading and joining in on. Us mets ladies, and the occasional gent, post regularly on there and most of us have bone mets but some have other mets as well. It’s where you can ask questions and get good answers rather than trawling through the Internet and reading very scary statistics.
Depending on your type of BC your treatment plan will reflect what is the best way to treat you. Being on hormone treatment and a bone strengthener is quite common even though you may be panicking that you are not on a more harsh regime. One of the ladies on here, JulieD, has been on a similar combo for about 6 years and is stable. We all tend to have scans of some sort a few months into a new treatment to make sure it is working well with follow up scans to confirm this every few months. The first infusion of zometa does often give flu like symptoms but it seems that subsequent ones don’t so this will probably be as bad as you will feel on this current treatment and next time around you shouldn’t have so many side effects.
There are many ladies now living with secondary BC for many years and leading pretty normal lives (other than the extra appointments we have to have!). Some choose to keep on working, other either reduce their work hours or stop working depending on their own circumstances. So it doesn’t mean having to stop what you love doing especially if you are not in pain from your bone mets or any way affected. I have had bone mets for 9 years now, the last 4 with liver mets and, other than having to give up work a few years back, continue as I used to do - but take more holidays!
I hope this helps and over time you will learn to live with this diagnosis but it does take time to adjust to the shock of it all - we all know what it’s like and sleepless nights are one of the bad ‘side effects’ - especially really on after the diagnosis.
Giod luck with your treatment and have a look at the Bone Mets thread - if you have loads of time on your hands you could read it all but it’s very long!
Nicky x
Welcome Carrie! Don’t worry about when you post! I’m from the USA so it always looks like I post at a wacky time! Many ladies don’t sleep well at night, so they might post too! Here is some good news in this for you. Most times when your cancer has taken quite a few years to show its ugly face again, it’s slow growing. My cancer is ER+, PR-, and HER2 - and very slow growing. My primary was 1995 and secondary 2005! I have lung mets most nodes in my chest. I also have one bone met in spine that appeared sometime in this journey. I’m 62 and was 51 when I started with lung mets. My oncologist told me that it wasn’t an immediate death sentence, but thought I had about 2years! Now 11 years! Sooooo sit back try to relax a little and enjoy that grand baby! I suspect you have many good years! FF
Thank you so much you wonderful people. You are an inspiration. Funnyface, my once said that as my mets came nearly 10 yrs after primary, this could indicate slow growth. Let’s hope so. Thank you all for your words of support. Will let you know when I’ve seen onc on February 1st whether it’s def letrozole? Took tamoxifen and aromisin originally. Xxx
Sorry funnyface. That should have been ‘onc’.
Hi ladies I have felt reassured from some of your comments my
Mum got diagnosed with bones mets in around august last year and was put in extemasane and everolomis apologies for my spelling x
She reacted Badly to the everolomis and ended up nearly in respiratory arrest before Christmas . They stopped the drug at the beginning of December and she can see the lumps on her skin growing again and naturally we are worried. Yesterday I had to take her in as she has cracked a rib as despite telling her they where going to give the drip to strengthen. Her bones they haven’t and the reg thought her bones may have become brittle.
We have been told they are now going to try her with a hormone injection begins with f but has to have a ct scan first . We are at st James in Leeds
My other concern is that I am a nurse and have supported ladies in the community palliative with mets and I am over thinking x
I am so pleased to hear you ladies have been living with cancer for years
Can you give me any advice on what to say to my mum to help x
Hi Dedi, I am too new to mets. The women on here are marvelous, sharing their experiences. They have certainly inspired me. I am realistic enough to know that not all treatments work for everyone. However, there is hope. Everyday is bonus in situations like this. Still waiting for my biopsies results to see what treatment I will start on, so a bit uneducated at present. I’m sure someone on here will relate to your mums problems and point you in right direction. I wasn’t able to have my last bone treatment as my calcium levels were too low. I’m now taking extra calcium tabs. I do know, there are many treatments to try. Can’t be of any more help at moment. Still
Very new to me. Hope your mom gets what she needs. X
As I said before, I am still coming to terms with mets. Your comments have been very encouraging. One thing I forgot to mention is that we have a holiday home in Scotland, which is 5 hrs away from home. I mentioned this to my oncologist and he said as long as I felt well enough and obviously attend my appointments, I should be fine to travel. Let’s say I am on zometa and letrozole, do you ladies agree it might be possible. I have severe calcium deficiency and, despite all the hype, where our holiday home is situated it is on the whole very good weather. My oncologist says sun good with protection. It is also good for my frame of mind and will be back regularly to see children and granddaughter.
Thank you again ladies. You have given me hope that I may manage a ‘normal’ life, once I get used to the regime once again. Your comments that so many of you manage to get away for breaks in between treatments especially inspiring. I do love my home in Scotland as is right by sea and, even if I am very tired, would rather be tired there. Husband can work from home a few days a week when not traveling around Europe. He will be cutting that down anyway. I too have bad knees and other problems which they say at moment are due to arthritis. Docs in Scotland very good - had to visit them last year for severe knee pain. Other people around me in Scotland very helpful too. Feel a lot better about future, however long. At least I know I have possibilities. Funnyface hope you get to Florida? Will be in touch soon all. Xxx
Oh, and happy Burns night. Got my haggis, neeps and tattiies. Xxx
Hello ladies. Sorry to come on here again with my anxieties. Supposed it’s only natural as I get to find out what treatment options are available on Wednesday. Was told probably letrozole if biopsies confirm same kind of cancer as primary which was hormone receptive. Just worried as it’s been a while since biopsies and thought if this was the case perhaps onc would have informed gp and got me started. Could be it’s not same which onc said was rare. Just worried as thought they would let me know sooner? They def had biopsies results by now but contacted GP and not heard anything yet. Still quite trying to get head around all this as I know you have been through this. Once I know, I will probably settle more into regime, whatever. If I have to have Chemo straight away I’m sure I’ll cope. Have already been told I will probably have to have adjuvant therapies incl tabs, zometa, Chemo and radio. Wish me luck for Wednesday. Let you know. Xxx
Thanks FF and Nicky. Yes my onc did make it clear that this would probably be sessions of tabs, Chemo and maybe rads. Think the stats I got confused. He also said 30% make it to 5-10 yrs. with appropriate and responsive treatment. He did however say that mets such as I have, breast recurrence, possible lung (they not totally sure about that) and, the most important at moment spine, will usually be original cancer. But as I say, did caution may not be. As I know you all know, this time around, meetings with onc are worse than treatments. You never know what they going to find next? However, this site is invaluable. Nothing can change things really. Important thing to carry on and live each day to the full. We look at these docs as ‘gods’, and I’m certainly not diminishing their wealth of experience and dedication, thoroughness and humanity. But we are all different, and they can only work with the information and experience they have. Have to say, my team are great. Thanks again. Be in touch soon. Xx
Hi ladies. Not sure. If my last post went out. Anyway bad news. It turns out the Ca is different and triple negative! So it’s straight to chemo. Thanks for all your help and support.
Thankyou for the reply x my mum had to come of the everolomis which she was admitted to hospital for as it damaged her lungs so much she was severely poorly . The ductirs have yet to put in her another drug and she is struggling as she can see the cancer growing on the outside of her remaining breast . They forgot to book the cat scan so now get next app is on the 20th Feb x
It’s just the waiting is really upsetting and she’s drinking more alcohol and won’t go to see the gp or counselling . I know she’s frightened but I did tell her about the inpirationsl stories on here I think that gave her some hope .
It’s so confusing that different consultants use different drugs and we as in their expert hands and they dint think they need to rush .
Do a few weeks really make a difference .
I have had 6 months if work as she had been so poorly both mentally and physically going back next week . I am actually a health visitor and it’s a stressful job hoping i can support my mum bra single
Mum myself and cope with work
I just wish she would come on this site or use the support offered
Any ideas would be appreciated on how to get to to access support
Thanks you
Thankyou for your words of kindness x I hope that Meir my sister don’t fall victim as both mum and gran have had breast cancer and my gran ovarian x
Your right about the onc app they are worse than treatment I dare not let her go alone as she doesn’t take it all in . Sadly my dad died in 2011 of a brain tumour and her sister in. 2005 so she has little in way of Support apart from me and my sister x
It’s hard going but I am hopeful that she will at least live another 5-10 years xxc
Thankyou such kind words x my sister helps but mum doesn’t like to talk to her so I get the brunt of it and then my sister goes mad xx
I am of back to work next week so she may have to go to some appoiemts on her own x but they are not settled on a treatment yet and she gets mixed up with what they are saying so I feel responsible xx
Yes they haven’t called it mets on her skin as it’s localised to get breast area at present but it stopped her healing properly after her mastectomy last year xx
I will be asking more questions when I go with her n t time as we will have the results for the cancer markets and the extensive full body ct scan xc
You ladies are amazing xx
Treatments have come along way in the last ten years and thankfully people are able to live with chronic cancer rather than it being a death sentence x