Why not join the Living with metastatic private group? Access group via the link here.
6mnths to live
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Yes thank you i will Primex. Im waiting to see if im a candidate before i get involved. Thank you for your time .0
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@Me2
So sorry to hear your latest diagnosis, how shocking for you. Let's just hope that they have it wrong & you continue fight & live on for some time. It's good that you have support around you as that helps so much. I hope you aren't in pain, but now you have retired you really need to put yourself first & enjoy life as much as possible.
Best wishes in your ongoing battle.2 -
Thank you for your kindness. Im getting help now with pain management. I have accute lymphadema in right arm and as the tumours are attack to nerve endings it is a constant battle for relief. Im still in shock as i came through my original ordeal quite well. I went to physio for onset of lympnadema only. By end of the following week i had a death sentence. Just a nightmare. Im still unpacking moving into our little place. I feel it redundant to unpack knowing my boy will only have to re pack and deal with that upset in near future.0
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So so sorry to hear your news..I can’t even remotely begin to imagine how you are feeling right now
my doctor said to me this week “never let anyone tell you how long you have left on this planet...even doctors get it wrong”
i have a friend who had an extremely rare cancer ( 1 in a million) in her upper back in 2002....so rare no one knew how to treat her and she was given 3 months to live....I had a glass of wine with her last night....against all odds she fought it and 16 years later as she’s said ‘still here to tell the tale”
hope your timeline is way way beyond 6 months
thinking if you and sending love and hugs
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Hi there @Me2. I was diagnosed with TNBC May 2016 aged 43 no lymph nodes involved scans all clear stage 2a grade 3 (3cm tumor) negative for the gene and 8 rounds of chemo no rads as I took the affected boob off then did i the other as a preventative (is your story similar) ?? . So responding to your post has taken me some time as it close to home for me.
Please know we are all here for you and you definitely need to stay positive that’s for sure. I would give you the money for the immunotherapy trestment if I had it love. Like you this shitty disease has buggered us and so many others financially too. Have you talked to your friends about a go fund me page or similar? Perhaps your local community can help you with this with a fundraising event ?? It totally sucks that’s you’d even have to pay for it in the first place
I have heard about the trials for TNBC and I think from memory @SoldierCrab might have some info or a link to that.? Not sure if it’s the one you’ve mentioned or not but she might be able to shed some light for you. Hang in there love that fat lady has not sung her song yet she hasn’t even taken to the stage Biggest hug to you love. Margie xx4 -
Hi onemargie, my story very different. I do have tnbc no braca. Mastectomy 16 rounds chemo 25 rounds rads, was considered very aggressive. Only had about 5 mnths clear without reoccurance. Wouldnt wish this on anyone . Very very best of luck on your journey. Sounds like youve really got a good chance1
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Hi there @Me2. @SoldierCrab has posted some links to the trials I was telling you about. Take a look and see if there’s something in them you can discuss with your oncol. And bc does leave us all with a shit creek to navigate through doesn’t it and you must feel yours is deeper than some others at the moment but you just have to keep paddling. It’s hard but you just have too. Like @Prime time said “don’t let anyone tell you how long you have left on this planet even drs get it wrong” all of us on this forum will grab an oar and help you paddle too remember that. Big hug. Margie xxx5
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Well all i can say onemargie is thank you. How wonderful to wake up and see your ray of positivity after a tough night. Cant thank all you ladies/warriors for lending me a kind word and support. It means a lot. Im now learning to accept help and kindness from others. Its a huge step for me to be cared for rather than me be the carer. Im the one who always rallies around others. I have been absolutely gob smacked to see my efforts over my life coming back to me at this time. I live in a small south coast town and have been overwhelmed by love and genuine concern. Its been a real eye opener. I thought i was invisible. Thank you all once again ladies, from the bottom of my heart.10
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@Me2 u r never invisible we r all here for u xoxoxo3
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I so hope they have got it wrong too.
I'm same as @onemargie. So it's taken me a while to respond too.
What was your original diagnosis and how long ago.
Please find strength from all of us xxx
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I totally agree Eastmum. Thank you thank you thank you1
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I totally agree Eastmum. Thank you thank you thank you0
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Dear @Me2, I am so sorry to hear your sad news.. all I can I say is stay positive, the mind is a very strong tool.. live, love, laugh... I can tell you my Mum, went on for a couple of years longer than predicted, So keep strong and fight. sending you much love xoMe2 said:To cut a sad story short, battled and i thought i won. Was due for my 6mnth check up, but three weeks ago got a sore shoulder then lymphadema then a black red swollen chest on mastectomy scar. Arm has swollen to capacity wasnt draining. Barrage of tests pet scan last friday result yesterday. Massage lymphnode invasion tumours wrapped around nerves as pain is shocking. Told very aggressive, offered chemo more radiation and maybe i will see christmas. A wave of white knuckle terror. Sadness guilt shock and a million “what am i going to do” things tushed through my head. Im a very strong oositive person but at that moment i was a blithering mess. I never thought it wS going to get me. I really didnt. I was very vigilant in my approAch to everything. Came through chemo (heavy dose as triple neg and wAs very aggressive) did 16 rounds chemo. 25 radiations. mastectomy. Came through relatively well . Just getting my life back. We had to sell our home because of my cancer. Just moved in 4 weeks ago. Still unpacking for god sake. Finally decided to retire and live my life for me. Embraci g the new me and flourishing then wham. All done and dusted. I would love yo hear a ray of sunshine from someone. Has anyone beat the 6 mnth prediction with anything remotely similar. Ie. aggressive tumours, nodes etc i would love to hear from you. Thank you girls x2
