My long and detailed post to everyone disappeared when I had to correct a spelling mistake. My profile shows I've made two posts so goodness knows where it's gone.
Essentially thanks to funnyface for details of the kyphoplasty, sorry to hear that sammycat is having problems with the letrazole kisqali combo and good luck to Gina starting on the combo
You sound really positive! I find the fizzy water really helpful. I start my next dose on Friday at 400 mgs so will let you know.Good luck I'm sure you will be fine with the tablets. I'm sure I would be if I could get the pain under control. Sitting here typing with tens machine on. It's really good and wish I'd tried it before. Hate pain meds as they make you crazy!! Look forward to hearing from you at end of week.
Hi Sammy cat, Funny face and Lulu
Thanks for sharing your experiences
I was diagnosed with secondary BC in March of this year, after initially presenting at my GP any the end of February with ongoing lower joint pain and back pain (three months).
The primary was left breast ER+ . I was started on Zometa and Zoladex the week later and then Letrozole.
Thankfully the pain has subsided and so far no side effects from the Letrozole, except for a few hot flushes.
I am currently mobilising well with two crutches and get pick up a good speed. So now having been feeling well and putting back the weight I am anxious about taking the Ribociclib.
However I have an action plan:
I will carry fluids around with me like fizzy water with lemon and mint or ginger ale (I have learnt
to make mine own).
Eat small amounts and often.
Take medication with food.
If I still feel poorly I will reduce the dose down to 400mg and inform my CNS.
I will give myself a task to do every day (usually in my greenhouse).
I will feed back to you my progress by the end of the week.
Hi Gina and Funnyface
You two have really been through it! Just can't believe what you have both been through. The back pain is so awful but I just keep getting told it isn't the mets that are causing it!! They just say it's the weight loss.
I really don't like the letrazole kisqali combo as I just feel really ill all the time and I was shocked to see what it does to your blood results. I keep saying that if my back didn't hurt then I would have no problem taking it. Nothing gets rid of the back pain and I am now having an epidural in August with yet more steroid injections. I have also developed crazy anxiety which is something really alien to me. Do any other of you feel this way? I think a lot of t is that I don't actually believe what the Oncologist tells me as he said I had it in T10 and T11 but when I read MRI result unknown to him it said also T12 and L1 and multiple other bony mets!!
Thats my moan over for todayso please keep in touch and Gina please take the meds as we are all so different
Lululu, I have lung mets but all along when I got a CT for my lungs it would say compression of spine. I never asked about this just assumed it was normal old age. Then my oncologist left the practice and I got a new one. She one day mentioned something about my bone mets. I'm like what bone mets? I've never bee told I had bone mets. She researched my chart and said I had them for years but only in one spot in my spine. Then last autumn I was in tremendous back pain.I couldn't get in or out of bed had to have an ambulance come to get me out if bed. My back would also go into these pulsating spasms. Sometimes if you just touched me lightly anywhere it would send shooting pains into my back. X-Ray and CT said there was nothing wrong. Finally after 3 months MRI showed it was broken at T-11 and T-12. The MRI report said it was osteoporosis not cancer. (Bone scan had said cancer 18 months before this). Orthopaedic surgeon said it didn't look like cancer. I ended up needing surgery. I had a procedure called kyphoplasty. They do two small cuts. Then place two balloons in your vertebrates to raise them a little. They fill them with cement and sometimes do some pinning. This was done in same day surgery. In and out. It took a couple hours. I walked out without the pain. I was a little sore from the surgery, but not the excruciating pain I had. I also have lost inches. I'm now on bone strengthening meds. By the way, my back had broke from having hic-ups for an hour. Every hic-up hurt so bad I was crying. You can break it coughing or sneezing too. Crazy!
I recently applied for a "Wish" from an organization and had to send a doctor a report. On that report it said my breast cancer was ER+, PR+, HER2-. My old oncologist had told me I was PR-. Now, I want to ask about that! Also, my old oncologist had never put me on tamoxifen after my primary BC. I asked him one day why I wasn't on it and he said he would have to check my hormone status bc he couldn't find it in my chart. A couple days later he came back and said you are ER+ but now that 5 years have gone by you don't need it. Plus he said it wasn't necessarily the protocol for my age. Hmmm another 5 years and I had mets. I think he messed up. I thought I was in good hands! I trusted what he said. So I definitely want to know if I'm PR- or PR +! I don't think it makes much difference in treatment, but who knows in the future.
Sorry this was so long. I wanted to tell you about the back procedure I had and how easy it was. I was so scared and was amazed at how well I did. Good luck! FF
Hi all, I was diagnosed with bone mets in autumn after 6 months of agonising back pain.
One of GPs I went to regularly assured me my cancer hadn't come back (breast cancer 2009) as the x-rays didn't show that, only collapsed vertebrae. She was quite dismissive until I managed to see a GP who was so concerned about the state I was in, she ordered an urgent scan. Three days afterwards, yes, extensive and agressive bone mets in my spine. Oncologist was getting worried by December as I continued to deteriorate losing weight and inches and admitted me to hospital for a few days. The worst thing from that time? The pain! Like some torture I had to go through as the medication continued to be changed and increased.
I was probably the first at my local hospital trust to go onto the Letrazole/Kisqali combination and starting on my 5th dose. I'm on strong pain medication (Oxycodene) so don't recognise the joint pain that some complain from Letrazole. I'm in a lot less pain but it's a constant background hum and I cannot walk very far unaided.
Initial prognosis was 6 months, which has been extened to two years. I don't dwell on this, just putting it out there. I've lost over 4 stone and 5inches in less than a year as my spine collapsed. Hate, hate, being short at just over 5ft. I used to be almost 5ft 7" as a teenager!
My bones are now healing due to the monthly zometa infusions! Letrazole and Kisqali are stopping the cancer from spreading. I am being referred onto a back surgeon to see if surgery can help with the pain. I need to come off the medication if surgery is the preferred option but only for a max of two weeks.
Sorry for the long preamble, when I only wanted to say that;
Kisqali is very well regarded by my oncologist and the cancer nurses. My side effects; being physically sick after taking them the first few days, feeling tired, sledgehammer tired. I've learnt not to take them on an empty stomach but occasionally feel nauseous. Also, the week off from the tablets usually morph into two weeks because my blood count for neutrophils (type of white blood cells) is low. I'm constantly being reassured though that isn't unusual.
Do ask any questions, but of course we are all different and have different needs for our bodies. I am in a much more positive place than last summer.
I also work in healthcare so that is why we overthink these drugs!! My honest opinion is that I personally don't want to start the the next course!! The thing is I have very bad lower back pain since original chemo . Despite steroid injections it is no better so maybe if I could at least sit down and rest I would not feel so bad!! I am blaming the tablets for feeling bad but maybe it is the constant pain I am in!! Who knows! Don't find anyone who can answer that.My Oncologist has said he will reduce the dose to 2 tablets for the next course. I think 3 is too many as I weigh eight and a half stone and I am 5ft 7 so sure it is too much as they would prescribe the same amount for a 15 st woman. I think the Onc. thinks I am making a fuss about nothing.
When I am taking them I get very shaky which is weird. Like you I don't like to take drugs and know too much to just take them without question. Have you got bone mets?
Sorry to have woffled on. I would say to you to give them a chance and if you have no other pain in your body you will probably be fine.
I expect like you I just want to get back to my old lovely working sporty life and can't believe any of this.x
Hi Sammy, I don't have bone mets. They thought I did but now,say it is just osteoporosis from all the cancer drugs. I do have lung mets plus lymph node involvement in chest. One pill leads to another! Hate it! Hang in there. Seriously just tired of it all, but it could be worse.
Hi Funny face. So sorry for the delay in answering you. I have ben off the site for a while as I was trying to get life back to normal!! I will have a look at the site you recommended. It's a very difficult journey and so nice to talk to others in the same situation. Hope you are getting on. Have all the mets in your organs now gone and are you just left with the bone mets?? I've never taken so many tablets in my life as what ever they give you it just causes more and more side effects therefore more meds!! Still if it all works it will be woth it.
So good to hear from you. I am so interested to see how others get on with this drug. I have not been able to find anyone who is taking it. I have had 2 cycles so far. I will not comment yet about my experience on it as everyone reacts differently but will be so interested to see how you do. I am taking 3 200mgs. tablets a day with the horrid letrozole! Be interested to hear more about you as well.I keep been told by my Oncologist that I am very lucky to be on it and that it is a 'wonder drug'!! Do hope so.
All the best to you. I know how you feel. I sat and cried before I took my first 3 tablets!!
Welcome Sammy! You will find the bone met thread very active where most of us hang out. Ribociclib is a very new drug, but I do believe someone here is on it. I did pabociclib/letrozole for 21 months. Letrozole made my knees so painful I tried crutches. Pabociclib weakened my legs muscles. Since coming off this combo my knees are back to normal and my legs are regaining strength. This combo really knocked back my lung mets. I asked to try ribociclib, but the verdict wasn't out yet last year if it would work after pabociclib. I'm willing to give it a try. I feel whatever they give us is a gamble. You never know what will or won't work. Everyone responds differently. You could also try an American site called Inspire. This can be a very lonely journey. Others just don't understand. The ladies here do. I wish you the best. Come join us on the bone mets thread. Hugs, FF
PS I am from the states so you might find me posting at strange times or saying things differently.
Hi. I was diagnosed last Setember with secondary breast cancer with mets in bones,liver and lungs. I was originally diagnosed in 2011 when I had large local removal of lump and radiotherapy.
I have completed six cycles of EC chemotherapy. I have just been put on a new drug ribociclib together with Letrazole. I am very anxious to hear from other ladies wh are on this drug to compare notes and experiences as I am feeling very alone at the moment!