Cycle 19 started

Hi Emotions  and welcome to this forum. You will find people with every sort of cancer or treatment here, but we are all part of this club we didn’t want to belong to. 

Cycle 19 sounds like you have been navigating this for sometime. I joined the club in 2022. Hopefully others will come along to welcome you. 

Hi Emotions I just replied to you on the other forum.  Welcome to the incurables.  I find it so helpful for me to write down on here my thoughts and feeling.   Everyone on here understands are are so supportive.  What chemo are you on, is it a tablet and the injections?  I am on targeted therapy Ribociclib, exemastane and denosumab.  I find it strange so many different treatments for secondary breast cancer.  I have hormone positive lobular breast cancer with extensive bone mets.  Welcome to this forum.

Lee x

Hi Lee,

Thank you for the lovely welcome. 

I am finding this forum really helpful already. It makes such a difference being able to talk to people who truly understand what living with secondary breast cancer is like. Family and friends do their best, but it is different speaking to people who are walking a similar path.

Interestingly, I am on exactly the same treatment as you – Ribociclib, Exemastane and Denosumab. My Ribociclib was reduced from 600mg to 400mg about a month ago because my immune system was struggling, but thankfully things have settled down since the dose reduction and I am coping well at the moment.

My secondary cancer is also in the bones, as well as my spine, lungs, liver and lymph nodes. The biggest issue I am dealing with right now is pain in my neck where some of the disease is. I have developed a horrible burning, sunburn-like sensation across both shoulders. Unfortunately, even the stronger pain medication such as Oxynorm, OxyContin, Gabapentin and Paracetamol is not touching it.

I have spoken with my oncologist, and they are arranging an MRI scan to see whether there may be some nerve compression in my neck causing the symptoms. So at the moment I am back in the familiar waiting room of scans and results. It never seems to get any easier, but I suppose we learn to live with the uncertainty.

It is strange how many different treatments there are for secondary breast cancer, and yet here we are on exactly the same combination. It is reassuring to hear from someone who understands.

Wishing you well with your treatment, and thank you again for making me feel so welcome.

Take care,

Nicole x

Hi Nicole,  my ribociclib was reduced from 600 to 400 as well.  I got low neutraphils and terrible rash.  Much better on 400.  I had radiotherapy on one of the tumours on my spine as it was pushing into the spinal cord.  It is much better now.  I have tramadol for the pain, did have morphine but didn't like it much.  This is such a great bunch of people.  Big hugs.

Lee x

Hi Leelaloo,

It sounds like we have very similar diagnoses and are on very similar treatments. I have also had radiotherapy, but unfortunately in my case it didn’t help with the pain.

At the moment I’m taking Oxynorm liquid every 4 hours, OxyContin slow release every 12 hours, Gabapentin 400mg, and Paracetamol. Unfortunately, despite all of that, I’m still in agony. None of the pain relief seems to be making much of a difference at the moment, which is really frustrating.

I’ve never taken Tramadol before. Can I ask how well it works for you? As our conditions and treatments sound so similar, I’m wondering whether it’s something I should ask my oncologist or pain team about. Although I do appreciate that everyone responds differently to pain medication.

It’s really nice talking to someone whose journey is so similar to mine. It makes you feel a little less alone, and it’s reassuring to share experiences with someone who truly understands.

It would be lovely if we could stay in touch. Wishing you all the best with your treatment, and I hope you’re having more good days than bad.

Take care,

Nicole x

Hi Nicole,  tramadol works really well for me, but it does make me extremely nauseous so I take cyclizine which works well.  I do clinical hypnotherapy through Penny Brohn on zoom each week.  One week it was about managing pain and it does work for me.  I also find keeping active and trying to walk even if in pain helps.  The longer I sit or stay immobile the worse the pain.  They offered me gabapentin for the nerve pain in my feet from neuropathy but prefer to stick to tramadol.  I also do Shabashi, which is like Tai Chi on zoom through Penny Brohn which is nice and gentle and slow.  I am more than happy to stay in touch. 

Lee x