Not sure Ibrance working

Hello

Sorry to hear your news, i can't really help you with your query but hopefully by me replying to your post it will bump it back up to the top and someone who can help will see it.

The only other thing i can think of suggesting is to try posting in The Breast Cancer Group maybe there will be someone in their with a similar experience or can help somehow. Failing that have you spoke to your breast care nurse, i have always found them very helpful and quite reassuring when anxious about anything.

Sorry i wasn't able to help more but please continue to post for support.

Thanks for your reply.

I will do as you suggest.

xxx

Hi 

I have secondaries in my bone and liver. I am on Letrozole and Ibrance, with some progression in my bones, but an improvement in my liver. Slightly different story as I have had access to 5 cycles, but vomiting in 4 cyles, so feel like I have only had 1 proper cycle on the ibrance. My tumour markers have steadily gone down and my oncologist is really pleased with the results. 

I am not sure if you have looked at the research and palbociclib is an amazing drug, although your oncologist would have stated that at some time it will stop working. It aims to slow down or stop the cancer/tumours growing. We all know that we are passed the stage of being cured. Try not to panic. Go armed with a lot of questions and discuss options. 

I think that the positive things are that you have reduced tumours markers, your lungs are stable. That is really important. Ok it has progressed in your bones, but discuss with your oncologist what this means. 

I am not sure how progressive it is in your bones and whether you are experiencing a lot of pain but want to give you a little bit of my story. When I was diagnosed, I had excessive pain in my ribs and spine. I could barely walk, get in or out of bed, I had been misdiagnosed with rib strain and I was in a bit of a sorry state. Believe it or not, I was still going to work and had just got back from a month holiday in florida which is where the pain started. 

Fast forward to a diagnosis. Advanced Breast Cancer with mets to my thoracic spine (4 different places), a couple of my ribs bilaterally, femur, pelvic, left bone at the bottom of my skull and for good measure - my liver. Fast forward to now.. I have barely any pain, I learn to pace myself, no more breathlessness and I feel bloody great despite some progressiveness in my bones. I honestly can't feel the difference. The cancer in my liver is stable which is a big plus. I receive fantastic support from my oncologist, nurses, local hospice community nurse. I really recommend to get yourself referred if you haven't already. They can assist with pain relief is this is something that is an issue for you. 

It is important that you get the advice and options from the oncologist. Best of luck, we are all on a nightmare journey, but learn to embrace each challenge and be kind to yourself. If you aren't happy with your oncologist, just get a 2nd opinion. 

Best of luck Sharron 

Hi Sharron

I have just seen your post, I dont know how I missed it earlier.

Thanks so much for takiking the time to reply, particularly as it seems you have enough on your own plate.

Since my post, I discussed with oncologist and he was reasonably upbeat about continuing wth Ibrance which I have done. Like you I had bad pain ( in my back) at time of diagnosis but this has improved significantly to the point where I dont need analgesia regularly.

Main pain and discomfort is on waking in bed but I am still fully mobile, thank goodness. I have found that sleeping with a pillow under my knees minimises pain and discomfort. Not sure why but as it helps I continue.

However, having continued with Ibrance, I suffered a mild stroke 2 weeks ago and have subsequely been taken off ibrance and so am only on Letrozol. Scary does not begin to describe the prospect of the key treatment being withdrawn. I am seeing oncologist on Monday and parying he has a creative option for me. A whole raft of scans will be happening in next wek to clarify any progression. 

I feel my oncologist is knowledgable and straight talking which suits me well.

I send you lots of love and light on your journey xxx

I am feeling very scared this morning after a awful long night of being sick and mouth full of ulcers and cold sores.

I am on my second week of Ibrance along with taking Anastrozol. 

I have Mets In every bone according to Onc. I have tolerated medication no problem so far apart from mouth ulcers which are so sore.

The sickness last night was awful.  I felt so scared the treatment is not working or maybe I cant tolerate it.

Should I ring Oncologist and let them know what's happening because I am not coping

Hi Mounties

I'm not on the same treatment as you but can relate to the same issues. I've had 4 sessions of EC and have had ulcers, cold sores and a small amount of sickness for the first few days after treatment. 

Have you been given any antisickness medication? May be worth a try. Your oncologist can also give you mouthwash for the ulcers.  You sound completely run down and being hit with so many things in one go is just so hard. 

If you are concerned then call you oncologist or Breast Care Nurse to see what you can do. It may be the dose you are on is too high for your body to cope with, or a normal side effect that will settle.

Try not to get distressed, there is no reason to suggest this is because the drug isn't working but try and speak to someone today for some reassurance.  

Hope you feel better soon.

Sending you some love 

Vicky

Thank you Vicky. I slept much better last night. Thank God.

I actually rang the Macmillan helpline last night and spoke to a nurse who had the most soothing voice. She advised me to contact my clinical nurse specialist today to talk about the cold sores and ulcers.

Like you she also said the treatment could be too strong.

Hope you're ok xx

Love this post and your positivity, found this helpful & encouraging.