Why not join the Living with metastatic private group? Access group via the link here.
Further Spread
Comments
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Hi bronmeg , wishing you well in your treatment . I too have numerous bones mets. which were diagnosed almost 6 years ago. It is a bit of a pain knowing that you will be on treatment for the rest of your life, but it doesn't have to stop you from living and enjoying life. I make the most of my time enjoying coffee with friends, walks along the beach, shopping trips and being spoilt by my husband . Grandchildren also make life worthwhile. There are times when we get down, but if you can cope with the side effects and get out and enjoy life, then we will not let cancer win. I must say that the constipation can be a bit of a bummer at times.! All the best . Be thinking of you.5
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Thank you @Payne and @SoldierCrab for your thoughts and kindness! I just love yellow roses. They are my absolute favourite. Something about their colour that makes me happy!2
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I was also diagnosed in 2008 at age 50. Coped well with treatment but mets in bones, lungs and liver in 2012. Stopped paid work to focus on my health
Been on a number of treatments over the last 5 years and have lived a good life.
Currently on Eribulin and feeling well. Unfortunately have to change due to neuropathy side effects.
Willing to use my super tp try palbociclib or Ribociclib but oncologist says they will not work for me as I have had metastatic disease for too long.
I am sure your oncologist will find a treatment to help you.
Let us hope new and better treatments are found soon and quickly put on the pbs.
I appreciate the support and lobbying bcna provides.
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You just have to get on with living your life. Let your doctors sort out treatments as that's what they are paid for. It's not just one doctor calling all the shots either. Mine gets into online conferences with other doctors and they discuss each others patients and that treatments to follow on with. Many heads are better than one.1
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No truer words were spoken @Brenda5. Doubts & fears do hit, but we generally learn to rise above to fight again. I shouldn't grumble as I really have had easier than some & I have had nearly 10yrs (so far). It is good to have a reality check every now & again, so thank you1
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- Hi @bronmeg1. I am only new to bcna but have found the group wonderful so far. Like you, I have bone mets. It was my initial diagnosis 15 mths ago. I thought I had broken a rib or pulled a muscle after a nasty chest infection, but no, I had actually broken my spine due to tumors on it. Have primary in lefty and tumors in other places as well. Had a total knee replacement 3 mths before this so it was pretty overwhelming at the time. They did spinal fusion surgery to remove as much of the tumors as possible and stabilize the spine. I had radiation and am still on oxy for pain (also Tamoxifen,etc). Like you, have a wonderful team - Medical oncologist and Radiation oncologist - and am still on 3 monthly CT/MRI scans with a Bone scan coming up in 2 weeks to see were we are at. I absolutely agree that the "Not knowing" is one of the most difficult things. After surgery, I couldn't use my arms much - couldn't cut up food, comb hair, use keypad but the physio said the best thing of all was "the Pool" when I was able. Not necessarily swimming, but simply walking, stretching, using a pool noodle and any other types of things you feel like. They will devise a plan for you but just getting into the water makes you feel good. I believe it has helped me heaps. I am 56 and my girls are only 20/21 so I would like to be around for a bit longer too. Cry as much as you want to and feel as crap as you like, it will change tomorrow, hopefully for the better. Good luck, stay strong, do what feels good for you. Have some Love from Me XXXX
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Hi @bronmeg1. I first had BC in 2013. Recently been told I have mets in multiple bones, liver & lungs. I am beyond despair. I'm 45. All I can offer you is virtual hugs and for you to know there's others out there like you. I'm on Zoladex & Letrozole & start Palbociclib & Denosumab (spelling??!) next Thursday. Let's all stick together. It is very easy to think you're the only one suffering like this. Love and strength, Etta ❤️Xxx2
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Hi Ladies, ive just been reading over this thread as I was just diagnosed with multiple mets in my bones, at the ripe age of 32. Its been found in my cervical vertebrae in my neck, lumbar vertebrae, mid spine, 4 ribs, throughout hips and other bones in that area. Im waiting to have a bone biopsy on friday. Im looking for any info that could help as we are a young family will children aged 7 and 10, with my husband being the bread winner and all family that live 9 hours away1
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Ah @DCP that is rotton news. Family living a long way away can make things even tougher.
There is a closed group for young women, give them a tap and they will let you in--sadly, there are a number of people in your situation.
About the only advice I can give you is try to organise any family visits so they are staggered and everyone doesn't arrive at once. This will be a long haul for you and will need support once you get going with your treatment. People's natural instinct is to rush to help as soon as they can; its good to have someone who arrives a bit later when the dust has settled a bit.
Good luck in the coming weeks Mxxx3 -
Hi @DCP I am an old chook of 62, and have been on this medical merry go round that is metastatic breast cancer for nearly 5 years, like you I have many mets in and around my spine and lower back area,there are also a couple of nasties in my liver as well, anyway, this is about you not me, so, my dear what can I say to you, first things first, as Zoffiel has said this will be a long haul for you,have the bone biopsy on Friday, hopefully you will get the results very early next week, unfortunately these things take time and we all have to play the waiting game, then there will be a visit to your oncologist to decide on what treatment plan is best for you,. will hubby be able to come with you, this is one time that you really need a second pair of ears as there will be a lot of information to process, my partner took a notebook and wrote things down because you will not remember everything, its very early days and you must be thinking so many things,can I suggest ringing the 1800 no, here at bcna the cancer nurses are there till 9.00pm this evening, so perhaps after your kids have gone to bed and things are a bit quieter give them a call and speak to one of them, and ask away, there are a lot of support services available you just have to know how to access them, when you get a treatment plan up and running please let us know how you are,
know that we ARE all here for you, you can come here anytime, ask questions, vent, whatever and someone will always answer you, you are not alone in this,try and take it one day at a time, one hour at a time if need be, you will get there,
sending you a big hug,
wendy55
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Sorry to hear your news. I too have numerous bone mets but was diagnosed 6 years ago. with my initial breast cancer diagnosis 20yrs ago. Life has not been too bad even though I have been on different treatments. In the last 6yrs , I have still been able to get out and enjoy life. Coping with treatment just becomes a different way of life. Try not to let the cancer beat you. I love going out with friends for coffee or lunch. I live near the coast so enjoy w. alks along the beach . There are days when things get you down , and I think everyone get anxious when its time for scans. There are alot of different treatments available now so if one treatment starts to fail there is usually another drug available. Hope things go well for you.2
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Hello @DCP, @bronmeg1,
Sorry to hear your news. Please dont hesitate to contact our helpline on 1800 500 258 if you would like to speak with a cancer nurse for information or support. We are available Monday, Wednesday & Friday from 9 am till 5 pm EST and Tuesday and Thursday from 9 am till 9 pm EST.
There is some great information on our website that you may find helpful. BCNA also offer a free counselling service if you feel you would like some further support. It is a professional one-on-one counselling support to women and men with metastatic breast cancer, and their families.This free and confidential service aims to help people diagnosed with metastatic breast cancer and their family members cope with a range of concerns they may be experiencing, including:
- uncertainty about the future
- concerns about their loved ones
- issues related to financial pressures
- communicating with family or health professionals.
The program is open to people in all states and territories. See the link below to further information.
https://www.bcna.org.au/metastatic-breast-cancer/metastatic-breast-cancer-telephone-counselling/
Wishing you both well in your treatment1 -
Thankyou so much for all the lovely advice, it’s very comforting to know that there are people out there to lean on and offer support and advice. Bone scan is all done, after an awful run in with a the CT nurse which lead me to walk out of the scan room in tears after some very hurtful comments. Now resting at home1
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One thing off the ''to do list' @DCP
There are a few of us here who have some techniques for dealing with snarky cows. Some of these methods are decidedly not PC. Some are.
You are in for the long haul and it's unfortunate you've had to deal with a bitch so early. There are ways of managing these people.
Firstly, get yourself a collapsible folder and take it everywhere. Get a month a page diary and a note book. Put them in the folder. It doesn't matter where you go, take that folder. Get business cards from all your consultants. In the folder. Every single person you deal with, in the notebook. Xray, ultrasound, whatever, who, what and when. In the folder. Ask for copies of every single test. In the folder. Starting to get the picture?
You meet someone like that again, get out your trusty folder and document it. Ask their name. Write down what happened. They will either behave or steal the folder.
It's easy to get bamboozled, keep records. Best of luck. Marg xxx2
