Jayrand56, About 4 1/2 years ago I had been on gemcitibine for about 10 months. Hubby and I HD gone away camping for the weekend. I was fine Friday when we left. I woke up Saturday morning extremely short of breath. I couldn't even walk a few feet to the outhouse. I was out of breath even putting socks on. We were due to go home Sunday. We packed up to go home and when I went to hug our friends bye we were all crying. Everyone thought I had taken a turn for the worse and that this was it, including me! I had never been that SOB with my lung mets. Monday morning I called my oncologist and he had me come in right away. They scanned me and there was no change in my cancer. I had pneumonitis. Which is inflammation all the lobes of the lungs. He took me off gemcitibine and all treatments for a month. I had to go on O2. In about 3 weeks I was fine, but my run with gemcitibine was over. FF
Just a lil' question...my onco. never uses tumour markers as he does not believe in them.....may i please have your feedback on this one?
How many of you feel supported in between scans?? I believe there is work in parliament on raising the care of 'all' secondary cancer patients.......not very festive...ooopsie..xx
Hi Magick and Butterfly
Welcome to the forum. I had primary bc in 2009 and was treated with radiotherapy and tamoxifen. 6 years later mets in my pelvis and skull were discovered during an investigation for something different. I was treated with exemestane which worked for 2 1/2 years but I'm due to start capecitabine after Christmas. I had some difficulty persuading my consultant that ex wasn't working any more. Lots of women have the same problem. We know our own bodies.
You mums are lucky to have your support
Butterfly, Welcome. The good news is that it didn't come back for 10 years! This might mean that it is slow growing. I went 10 years and then it showed up in my lungs.I have been here 13 years with it in my lungs.
Best wishes for your mom! FF
Hello Silver, It’s lovely to hear from you! Sorry to read you’re still in pain but so pleased about your biopsy result. I hope you have a much better year ahead, don’t forget to let us know how you’re getting on. Very best wishes, Kate xx
Merry Christmas to you to Silver, i do hope your pain subsides, i found gabapentin works well in lrge doses, and morphine excellent into the vein, but no joy from morphine by mouth or patches.i was wondering if the new cannabis oil would help you, it is available on prescription now i believe. you have all my sympathy, constant pain takes up all your energy. thinking of you.
..dear funny/f........just lovely to be understood, albeit from afar........even my oncologist shows no empathy......where does one go? Thank goodness i've a super rheumatologist.....xx
Merry Christmas Silver! Hoping your pain regimen kicks in and makes you more comfortable. I think when we get other things wrong with us along with already having cancer we get overwhelmed. I find drs and friends don't understand it. You tell them you have arthritis and you can tell that they are like So does everyone else! Yeah, but we have cancer, plus side effects of treatment and other things. Grrrrrr! But somehow we still keep going! FF
To dear Kate21; funnyface; rosie53; bonariensis; Anne30 & ramade.........& anyone else I've missed.....
Just popping by to wish you & yours a very Happy Christmas and a safe, happy, healthy 2019!!
My oral biopsy came back as hyperplasia...so missed the bullet but they are going to be vigilant......
I'm still in a lotta pain, but I'm now on Morphine and Gabapentin.
Inflammatory arthritis just kicked off in my small joints...nae gr8 timing.......but hey ho....ho, ho, ho...here we go....
Love & all good wishes to u all....
I was diagnosed with lobular cancer my right breast in 2015, with DCIS in left breast. Started on Letrozole and denosumab then DCIS progressed and had a lumpectomy in January this year. CT again on the 19/12,so fingers crossed everything is stable.cant have chemo as am neutoopenic. Hope this helps
Thank you Janette and Bon. I find I feel a bit achey a day or so after but it soon settles, like you Bon I just think it’s doing it’s job! When I was originally on Denosumab it was given monthly at my hospital, although my Onc did say not to worry if I needed to miss a dose due to it’s longevity in the body, now 2 doses are given then it’s 3 monthly. Apparently around the time I had problems so did another couple of patients and the policy was reviewed. Interestingly, the Max Fax consultant had said to me that in their opinion 3 monthly was the dose she would recommend, again because of the length of time it remains in the body...years according to them and the Onc who gave me my news earlier this week.
I hope you are both keeping well and any treatments are being kind to you..Kate xx
Good news Kate. Hope you can stay on Denosumab now. Had some yesterday, my bones ache today. I suppose i can feel it doing me good!
Take care Ff. As long as you can see out, don't worry about the detail
Kate21, Bone scan said cancer in t-11, MRI said no sign of cancer, but osteoporosis in T-11 and 12 and broken. Dexa scan of femur said no osteoporosis. Crazy!
I do very well but I'm very careful. I washed windows a few weeks ago and killed my back forcing a window shut. Won't do that again.
Hi FF, thank you, I was treated with Letrozole and Denosumab but cutting a long story short, then got a jaw problem after some dental work and couldn’t have my Denosumab for total of 10 months, consequently some weakness has resulted in my bones..Dexa scan showed borderline Osteoporosis in my spine but my femur was fine, thinking my age is also a contributing factor. I’m back on the Denusomab so hoping things will improve by the next Dexa scan. I’m very lucky with my Oncologist, GP, etc, but she was on holiday and hadn’t met this chap before, very nice but he did confuse me! It definitely was cancer when I was diagnosed October 15, straight to stage 4, my primary has never been found, but I’m just happy, whatever he meant! I remember reading on here about your back, from what I’ve since read sounds like you’ve made a good recovery? Hope you’re otherwise keeping well, Kate x
Magick, I don't really have mets in bones. One time they said I did, then they said no. Last year I broke my back and they gave me a brace to wear until I had surgery. This thread for bone mets has ended up being a place where all of us chat even if we don't have bone mets. My mets are in my lungs and lymph nodes in my chest.
Never heard of Alozex.
Magick, You are doing fine with your English. As you read along you will find differences in my English too. Americans even spell things differently. Ex: We say...The blanket is "cozy". I think I've seen the ladies on here using "cosy". Your English will also improve talking with us. I never did well with languages. I think I would do better if I moved to another country and had to learn.
I was in my younger days learning a good bit of sign language because I had a friend with a deaf brother. I don't remember much. I can still sign the alphabet and a few words.
Have a good day! FF
Kate if they think it's not cancer that's great. Make sure they keep an eye on the arthritic changes. I have osteoporosis from all the cancer treatments. I've lost 2 inches in height. Also last year broke my back and they cemented and pinned it. I'm now on none strengthening drugs. It is called prolia and you get it every 6 months. FF
There wasn’t any mention of infection, only arthritic changes, and my blood results were very good. You too, best wishes, Kate x
I’ve just had my MRI results and while I’ve been NED for almost three years today I was told there is no sign of cancer in my cervical spine (where my mets are) and the scan is now only showing arthritic changes. I said about having been NED (it wasn’t my consultant as she’s away) but he just said again about arthritic changes. Obviously I’m delighted whatever he meant but wondered does anyone know is there any difference? Thanks
You are welcome to join this site. Sorry to hear your mum has cancer. I got my first cancer diagnosis in August 2013 too. When my mum had breast cancer I wish there had been a site like this: I would have joined it. We are a "mixed bunch" meaning we are quite diverse. We can rant, learn to understand different points of view, sometimes even laugh and it certainly helps me to cope a little better sometimes. The site has been a bit quiet recently but there are a lot of people on it. Hundreds of years of experience I guess!
Magick, I'm from the USA and I belong! Also we have had family members join before. How long has your mom had secondaries? Where did it come back at? Mine came back in my lungs 13 years ago. Welcome! FF