Ribociclib/Kisqali with Letrozole - Any one on this combo?
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@airlinegal Thanks for the update, and my best wishes for a successful treatment.
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@airlinegal, it is always interesting to see how different oncs approach treatment. I hope the new approach works for you.
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Thanks for your update @airlinegal !
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I'm getting freaked. 3months ago radiologist reported seeing 'something' on my CT in the general area of my abdomen. I had an endoscopy which was normal. However after CT last week radiologist again reported seeing 'something' which might be dilated bile ducts. I'm having an MRI in a couple of weeks to investigate that. It all seems to coincide with when I started taking kisqali. I've had gallstones for years which could be a factor. Then there's my recent weight loss and gassy issues. I know something's not right and I'm terrified it could be cancer of the bile ducts.
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hey forza, and everyone else, thanks for the kind comments.
I'm still doing really well on my reduced dose of kisquali, still NED.
I had a terrible time with a UTI, ending up in hospital and 5 different lots of antibiotics to try and get rid of it. I got referred to a urologist who put me on to a product called Hiprex which has given me my life back.
my iron count has been really low and have had a couple of iron infusions. they really aren't sure what's causing it..have had a endo and colonoscopy and everything seems normal there. beyond that, life is pretty normal…I'm still eating mainly keto/very low carb, and feel good. ill try to pop in more often just to catch up with you all and answer any questions you may have.
sending you all gentle hugs <3
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@aoibheann The unexplained symptoms are scary, but I hope you get answers very soon and that everything is ok.
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@aoibheann, I had something similar, but it was definitely my gallstone(s) causing the problem. Although the status of said gallstone(s) changes every scan - first scan said I had 1 very large stone, next one mentioned several stones and obvious gall bladder issues, last scan we are back to only one stone and gall bladder looks fine. I also found that ALP blood levels can be affected by gall bladder issues. I also note that until I was told about my gall bladder issues, I had no pain or problems with it - as soon as I knew about it, instant gall bladder attack. I have come to the conclusion I am a hopeless hypochondriac - lol
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@tougholdcrow, thank you
@malleemiss251 , did your docs do anything to resolve your gallstones (medication?) or are they planning to operate? I know my onc is very reluctant to sanction any surgery on me. I thought gallstones could be shattered by ultrasonic waves or something. My own doc (GP) has put me on a sort of FODMAP diet (no wheat or dairy etc) but it isn't making any difference. Fingers crossed for both of us that things will improve.
Hugs
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@aoibheann, they have done nothing for the gallstone(s). I have no faith in the scan readers. I just keep on trundling along. Oncologist did let slip that she is watching my blood work very carefully - it seems my body is a bit different. Good luck with your gallstones - they can create havoc with you body to mention nothing of the pain of an attack - seriously not fun.
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@malleemiss251, well it's good that she is watching you carefully. I hope your gallstones are not causing you pain any more. Did your cancer markers go down and stay down? As I said mine are rising again so whether onc increases dosage to 600mg or changes drug waits to be seen. I'm having an MRI in a couple of weeks though I read that a MRCP scan is better for imaging probs with bile ducts, gallstones etc.
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@aoibheann, my CA15-3 was 10 last time it was taken and CA125 was 5. My liver and kidney numbers are good and my ALP is well within normal range. My neutrophils are just below normal - 1.9 last time taken. CRP is back to 0.8 and ESR is down to 30. Because I have a separate issue with appetite my urea levels are below normal - indicating I am not getting enough protein - they are watching that closely. So am I, because I am doing resistance training and I need more protein to build muscles. I hope you have a very good day.
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@malleemiss251, that's great news about your markers! I'm sorry that you are still having issues about your appetite and I hope they figure out what the cause is very soon. Have a good day too
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It's so nice to hear about your trip @forza :)
I'm currently in a trip mixed between work and holiday. I traveled 2 days after my faslodex+zoladex shots and will come back on the day of my next one. I'll go from the airport to the clinic. I have Kisqali with me and I found a hospital where I can run my tests…my husband doesn't think it's a good idea to do it abroad but I booked and I will see how I feel on the day. I still in my first MBC year so I would be so scared to stop any medication that I wouldn't be able to enjoy my time.
It has been a few months since I reduced my K. does from 600 to 400 because of QT intervals going crazy, however, my last scan was in October and I'm in remission now, 9 months after starting treatment. I'm so relieved yet in hyper-vigilance state of mind and I'm struggling to know how to 'live' 'normally', as the doctor said :)
Much love to everyone here <3
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@radiation_cinderella Welcome to remission and may it remain so for a very long time. Enjoy. I slowly began to feel that I could start living life again, although life is not quite the same. It's the "new normal," and I wish you much love and joy in this phase.
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