Palbociclib : Hi everyone, just left... - SHARE Metastatic ...

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Palbociclib

Hi everyone, just left the hospital after getting CT scan results with questions that it's too late to ask - can anyone help?!

So, scan showed reduced breast tumour and no change in bone mets but a nodule in my lung was detected. Doctor said thinks it's nothing significant. Question is, if Palbociclib is working well on known tumours, can fresh cancerous growth appear elsewhere? I assumed it either works on everything or it stops working and that's when other tumours might pop up!

Grateful for any insights!

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Hi GollyG

I’m on same drugs with many bone mets and I did ask my oncologist if it mattered how many mets there were for the drug to work and she assured me that it would work on all of them

I did have a nodule on my pleura which has recently disappeared I assume from the pablociclib

However I’m not a doctor and if this is preying on your mind I strongly suggest that you contact your oncologist tomorrow and get an answer to your question

There’s nothing worse than worrying about a scan or blood result and quite often there was nothing to be concerned about anyway!!!.. you don’t need to spend time worrying needlessly

All the best

Barb xx

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Thanks, you're right, just hard to speak to the right person at hospital. Really appreciate your input 👍

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I would ring your breast care nurse tomorrow ( I’m in the U.K. so don’t know what your procedure is) to get an answer from your onc. as you will only worry about it ! I cant tell you the answer as mine was bone mets ... but I do know that no change in bone mets is often the case if you have only been on the meds for a few months. Mine wouldn’t scan after just 3 months for bone mets only, as they take time to show any change . But after my 9 month scan , my bone mets had healed over .Hope it goes well for you too x

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Thanks - I didn't know that about scanning bone mets, encouraging to know they might heal in time. I'm GB too and so far mets in bones only which is why especially alarmed by the lung news. Will track down a nurse tomorrow! ☺

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Hi GollyG. Congratulations on the reduction in the breast tumor on your CT and stable bone mets .....that is always a big plus and wonderful news. I wouldn't worry too much about the CT identifying a nodule in your lung. That is extremely common and usually the CT report will report them as opaque ground glass nodules. If they are reported as solid then they worry more. I have one myself (opaque) and what is important is that it be monitored with each subsequent CT which it will be. I don't know your age but my oncologist told me up to 80% of people over the age of 50 will have them seen on a CT. They just weren't identified as readily until the popularity of CT's has grown.

Believe me I know it is hard not to imagine the worst with this disease. Take care.

Sandra

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Hi GollyG, I agree with Teddielottie’s comment to call a nurse if there is one in the practice you go to, however Last week I got the very same news. All my tumors have either resolved or decreased by half with only 3 months of Ibrance/Palbociclib—except for one bone mets lesion on my pelvic bone which doubled in size. My oncologist who helped develop Ibrance was not concerned. She said to stay on therapy and we will track it with the next scan. I must admit from time to time I get concerned but tumor markers and rest of scan points to improvement and so I reassure myself that my onc has likely seen this before. Best of luck to you!

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Thanks everyone for sharing experience. I spoke to nurse this morning and this is what she said:

nodule is 'non-specific' and 'not suspicious' - no info on whether it's solid or opaque but guessing from your info, Sandra, that it's opaque.

on question of whether you can develop new tumours while others seem to be responding to treatment, she said evidence of new tumours would reveal that the palbociclib was no longer working... Anyway, the important thing I need to learn is to take the good news and not fret about the rest!

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Excellent! I'm so glad you were able to get things clarified.

Sandra

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Yes new ones can appear and they dont worry about those lung nodules if they are small. Hang in there. Love and prayers.

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Thanks for kind support

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Don't sweat the lung spot. I've had them come and go. They really can be nothing. You have to make sure to watch them, but don't worry until it's time to worry.

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I'm going to make that my motto! Thanks

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I read you can get blood clots in your lungs from Ibrance. Be careful!

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Yeah, though guessing a clot looks different from a nodule on a scan? Don't know, googling 'false positive ct' comes up with lots of stuff. Should probably stop googling. .. ☺

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Yes a pulmonary emboli ( blood clot) looks completely different on a CT and because it is serious would be tagged immediately by your radiologist. As Diamags said...don't worry until it's time to worry. And yes.....even though the urge to google everything is strong it is best not to. You have to build trust in your oncologist and know that they are there to do the very best for you. Take care.

Sandra

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