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mikayla's avatar
mikayla
Member
10 years ago

Taking a step!!

Hi all ,

Well this is a big step for me I must say been thinking about it for along time must do this it might help well here I am finally nervous but blogging lol... Must say can't do it without tears. I was first diagnosed in 2001 with early stage bc after radiation and lumpectomy and 5 years of tamoxifen was given my cancer free clearance but that all changed on the 28th on May 2015. after having a ct scan for what was a precaution for chest pains etc they had discovered a tumor in my chest. No one really expected it to be sbc was told a whole range of scenerios none of which included bc. After a multitude of test and biopsies was found to be sbc which had been making itself at home in my sternum,ribs,lung and spine. Bummer...  So off we went to chemo for 12 weeks had port inserted which was amazing. That was until I developed a staph infection and had to have it removed which left me on antibiotics through a pick line for 4 weeks.

So anyways now I am on Denosumab and Zoladex injections monthly and a letrozole tab daily. Would like to know if anyone else is on these especially the Denosumab and what effects they are feeling I have been on them for 4 months now and not really liking it everything creaks and cracks and aches getting tingles down my the bottom part of my legs.

I have read a few post mentioning the monaleesa trial what exactly is that. I too have horners syndrome have seen that mentioned before as well.  Well that's me in a nutshell today Yah for me finally did it... Hope some one is out there ..

5 Replies

  • Whoops, only just saw this..

    The first post is always the hardest..  I promise :) :) :)

    Your creaks and groans could easily be from the Letrozole rather than the Denosumab.  For me I found the Letrozole turned me into a very very slow and old turtle until I could wind up.  I have been off it for ages now and as long as I am on Denosumab (3 1/2 yrs now) I am fine.

    I have had a couple of breaks from the Xgeva (Denosumab) and found that within a few months I ache like crazy..  First jab back on and I am much better.

    I am unsure if you know that Xgeva can steal your vit d and calcium and to maintain levels I have been taking magnesium, liquid vit d and 122 mg calcium.  I also was taking glucosamine to assist with my joints...  they are all safe with this medication and will not interfere.  I am checking one more that helps with inflammation as I cannot remember and just waiting on the answer and will let you know.

    Hoping your aches subside and you can stay on this drug and keep your visitor at bay for a really long time

    hugs, Sharon xoxoxo

  • Hi Brenda5,

    Thanks for the reply. Sounds like the same sort of thing my doc tells my that they usually give the injection three or six monthly but I have to have it monthly as my sternum is in pretty bad shape I think. But he is giving me this month off it to see if my symptoms improve.  I seem to be ok until the evening then it all goes pear shaped usually but you get that . Hope your dads doing ok sounds like he is a fighter that's for sure. Hope is all good with you too.....

  • Thanks Rowdy,

    Think this site is going to be good for me... Enjoy your weekend and have fun.... Thanks for the message...

  • My dad has the same sort of thing. After beating testicular cancer and then prostate cancer, its now in his ribs and other bones. He is 75 so has the (I think) zoladex and possibly other one too as injecitons at home by nurses who come and do it and then he has daily tablets.

    Mostly he says he just has pain which he also has a 3monthly injection for or something like that and he is very tired and lethargic. Hard to tell though at 75 if its just getting old or its the meds. He's doing alright though. :)

  • Good morning and welcome to the site and your first blog. I'm so sorry to hear your bc has returned. I can't answer any of your quostions but I'm sure there will be someone who will jump in later and help.

    Hope your day is good it is Friday Yay, weekend for me no work,