Hi all,
I’m looking for some positive stories. Yesterday I was given the news that my breast cancer has spread to my spine in 2 places. Chemo has been stopped and I’m not going to start on targeted drugs to slow the growth and spread. I’m being put on letrozole, goserelin and bisphsophonates. Is anyone else on these and had effective results for long amounts of time? I’m looking for any hope, I have 10 and 14 year old and am devastated and scared xx
Hi
Sorry to read you have had this news, must have been a unexpected discussion emotionally :-/
There is a lengthy thread (5 pages) of Positive Stories in the Secondary Breast Group here you could have a read through ?
There are several ladies there who also have spine spread and are on similar meds.
Hope this helps ease your fears, G n' J
Thank you so much there are so many positive stories it’s really helping me xx
Im sorry to here about youe diagnosis intoo have same disgnosis but in all my bones as well as spine. Im only been disgnosed since June aged 32(33 now) but if you would like to know anything about tje teeatment just ask
Xxx
Thank you for your reply, are you taking the same tablets as I will be? If so how effective have they been so far? And what have your side effects been like? I’ve been told I’m expected to do well and better than most on these drugs but obviously that’s not a certainty the same as everyone else. I guess I’m lucky in a way that it’s only my spine so far...I hope it stays that way for as long as possible xx
Hiya
I had a scsn in November and results showed considerable shrinkage on diagnosis i had deposits in liver they cant be seen anymore. The rest of had considersable shrinkage
Side effects for zoladex when first had injection I had night sweats fortunately no hot flushes
Lethzole some aches snd pains in the joints and slight thinning back ny hair
Besopbnates the one I'm taking is denasasaub its been mixed bag for ne because ive had loe calcium so unfortunately ive only had injection three times third one yesterdsy so can't comment on that but make sure you have good dental hygiene and they usually tell you to go dentist befire hand for all clear as extraxtions while on them can prove difficult. They probably prescribe you vitamin d and calcium un supplements
My oncologost ie very pleased with how lethzole and zoladex combination working together plhs tolerating quite well.
Im just suffering alot of pain wirh ny back and have crudjed verrbtee due tk cancer so going see surgeon sbout it. I also suffer from anxiety and depression been on medication since 2013 but jss got worse upped. Medicstjon twice since diagnosis once sfter diagnosis snd another time unfortunately my mum got disgnosed with cancer or thyroid she going start very tough treatment plan next week so also seeing physcolggist sorry dor giving you my bsck story =(
If there is anything you want to know add me as friend and we can meesage i was very much in denial sbout my condition wr first lot take in but can emphases with worrry etc cause disgnosis its self and treeatment plan its self xxx
Thank you for replying. I’m due to start my meds next week when I see my oncologist again. He’s given me a week to come away and let it all sink in as it was info overload. I’m hoping and praying I have a positive reaction to the tablets and I can start to try and get back to some kind of normal. I’m so glad to hear you’ve had good results from your treatment and that’s reassured me so thank you very much xx
Hello honey
I was given news like yours last September. I initially thought I wouldn't see my granddaughter, born the same week, going to school. I now think I may even see her going to secondary school or beyond!
The positive thing about the spread being to only our bones is that it can be managed.
Im 55 and on Letrozole, Zolendronic Acid / Zometa) the bone strengthening infusions every 3 months, and Ibrance (palbocyclib, one of the targeted therapies.)
I see these as doing the following:
- The Letrozole will stop the hormones that stimulate the cancer cells growth ... sooooo, no more spread
- The infusions will strengthen the bones that the cancer gas weakened ... soooo less likely to break or crumble.
- The targeted treatment will somehow stop the cancer cells multiplying.
In my book, this is all very positive. PS this is only my interpretation of what these things are doing
My metastases weren't discovered till it was quite widespread. Its in a few parts of my spine, my skull, a rib, my pelvis and my thigh and hip.
My oncologist organised surgery for my leg 3 days after the scan showed how weak the thigh bone was. If the bits of your spine looked weak he/ she would have referred you to orthopaedic folk who would have strengthened it. The fact that you dont need this is positive. The other positive is that bone weakened by cancer can be strengthened by meds and if necessary, surgery.
I feel VERY positive for you. It seems you have found this before it has spread too far and that is great. The treatments available now are amazing and getting more amazing with new advances and research.
Yes, it will (has) change our live's. I see that as positive. It will make you think about what's important to you and do more of that. No-one knows how long they have to live. Even before cancer my mantra was 'life is too short to do ..... ironing, this job, etc'. That means more to me now.
I have a lot of pain from my keg and hip but I found a great pain management team so it's ok. There is help out there for most things that affect us. My pain management team comes from the local Hospice and are wonderful.
I can't walk far but I can now drive again and have a husband who can push me in a wheelchair, lift it over fences etc to get me to the beaches I love.
I know you wrote your first post in Feb but hooe my reply is still relevant. Wishing you all the best.
Lizzie
Hi Lizzie,
thank you so so much for your lovely positive reply, I’m sorry you also find yourself in this awful situation as well. You’re right in that my situation is fairly positive and my oncologist has told me he expects me to do better than most whatever that means!! I’ve found a councillor that will talk to me by phone this week so try and help me deal with my constant anxiety, I’m hoping this helps me feel less anxious all the time. I’m on ribociclib so the same “ family” as your on. I’m waiting for a scan to see how I’m doing and if all the treatment I’m on is working.
thank you again for your positivity
danielle xx
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