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Palbociclib Not Working

9 REPLIES 9
Member

Re: Palbociclib Not Working

Thank you for responding.I will let you know how I get on.Maybe things will become clearer.

once I see onocoligist.

So sorry you have to deal with this on your own.

It can be lonely.I have a lovely family who are there for me,but sometimes you need to talk to someone who actually is going through the same disappointments,and the horrible reality of this awful disease.

You take care and keep in touch.xxx

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Member

Re: Palbociclib Not Working

Hi Walsh

 

Try not to worry too much, ( I know that's a stupid thing to say because I worry all the time !!) about the timing of the scan results. They can report on them very quick these days and it sounds like your hospital may be super efficient.

 

I had my PET CT scan on Monday 15th Not due to see onc until 31st (2 weeks later) and my nurse on holiday from 25th. I wanted my scan results before 31st but couldn't change appointment because of short staffing due to holiday etc. Anyway I rang nurse up on Wednesday 17th and she was able to give me the result over the phone. 

 

I haven't yet seen the report but they never show me that the oncologists seem to prefer to give me very minimal info, pretty sketchy and basic, if I need detail I ask the nurse. I will insist on a copy of the report on Wednesday

 

Like you I feel I have failed early on. My onc was very positive when I got started on the letrozole/palbo combo - saying it was a miracle drug and would give me years and not to worry and just go on and live my life as normal. Well I'm in too much pain to even get out of bed some days even though I've increased my morphine. I'm on my own with two teenage boys (my ex filed for divorce as soon as he found out about the cancer - don't even go there it's been a nightmare) and it's a real struggle, emotionally mentally and physically.

 

I can image you must be so worried especially about the liver met. But hopefully if this treatment has stopped working there will be something else, even if it's chemo. 

 

I'm dreading chemo. I dont know how I will physically do chemo. But I will try anything to give myself a bit more time

 

I will let you know what the plan is going forward so at least you will have some info about possible treatment options before your next appointment in August.

 

I am thinking of you and keeping my fingers crossed for you. X 

Member

Re: Palbociclib Not Working

Hi,ruby doo 3

thank you for sharing this information,Yes I am a bit scared to as I have only been on Letrozole and pablociclib since April,I feel I have failed at the first hurdle,have an appointment with onicoligist on the 15th August,to discuss scan results(13th August).Again seems odd that I have appointment with Onocoligist so quickly,your breast care nurse is giving you some idea what your choices will be,that’s good.Just Wondering if I have no choice As one liver met getting bigger.Hate the idea of chemo so soon,as I feel very well ,and I know chemo can make some people unwell.

Will be thinking of you,on Wednesday.

good luck

Walsh

 

 

 

 

 

 

Member

Re: Palbociclib Not Working

Dear Walsh

I was diagnosed in November 2018 with ER+ stage 4 after my spine fractured. I have Mets in Spine (mostly lower thoracic area), sternum, soft tissue in chest wall where original tumour was removed (left side), left hip and pelvis. I am 50. I have had rads to spine and left pelvis, as well as spinal decompression surgery. 

After all the doom and gloom I felt a bit more upbeat about my prognosis as my oncologist got the funding through for Palboclbib which I started end January 2019, alongside Letrozole. My onc said that the treatment could give me one, possibly two years, disease free progression.. The 

Ist 3 month scan was inconclusive in bony mets areas as to whether it was working, and showed I also have primary papillary thyroid carcinoma. My last scan about 2 weeks ago conclusively confirmed progression in all bone areas, with new Mets in right hip too - I half expected this as I have had significant increase in Mets pain recently.

My nurse told me that the letrozole failed, the Palboclbib is designed to boost the letrozole and make it last longer and hopefully give patients more time before cancer becomes resistant to the treatment. Obviously in my case I had less than 6 months before it failed. 

I see my onc on Wednesday but my nurse has said I have one of two possible other hormone treatment s before we go down chemo route - fortunately at the moment there is no evidence of disease in lungs or liver.

I will let you know what the next plan is. I have read that sometimes having a break, doing chemo and then coming back to the hormone treatment works better. But I'm not sure how true this is. I will push my oncologist for an answer on this as I am worried about my options being limited as treatment has failed so quickly.

I hope you get some answers and a plan going forward asap and I hope, whatever it is, that it works for you and slows this horrible disease down a bit.  Thinking of you x 

Member

Re: Palbociclib Not Working

Thank you again for taken time to reply to me.

xxx

Community Champion

Re: Palbociclib Not Working

Hi Walsh

I've replied to your question on another thread but I just wanted to add that the reason you often go from a hormonal treatment to a chemo treatment can be when some mets are not responding well to hormonal treatment.  Chemo tends to give a more rapid response (after all it's a much tougher regime) and can get things under control quicker. It doesn't mean this rules out having hormonal treatment in future, it will all depend on how you respond to different treatments.

Nicky x

Member

Re: Palbociclib Not Working

As far as I know very similar.Thank you for your positive vibes need them right now.xx

Member

Re: Palbociclib Not Working

hi thinking of you and sending positive vibes, is palbociclib the same as ribociclib as i also had to miss 2 weeks due to low blood cells and am on cycle 3 so wondered if this is a common occurrence x

Member

Re: Palbociclib Not Working

I’m sorry to hear this. I can quite see why you’re anxious. I cant really say anything particularly helpful apart from that I’m thinking of you. You need to trust your oncologist I suppose but it’s difficult x

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Member

Palbociclib Not Working

Hi anybody,

Have extensive liver mets,bone mets in pelvis,hips and spine.

Only been on Palbociclib Letrozole for 3 months early scan which was taken on cycle 2,(missed to weeks due to low white cells)

scan now shows some liver mets smaller,but one has got bigger,mets in bone only one area got bigger.They say will give me another scan in 6 weeks time,and it will give them a bette4 idea and that I will have been on the treatment for over my 3 cycles.Onocoligist thinking chemo if mets not got smaller.Can anyone tell my straight to chemo and not another targeted therapy.So confused.i am scared I have no choices but to have chemo,only.