UK based warriors, what was your second line of treatment offered after Ibrance and Letrozole?

[R7777]

Hi, my Ibrance+ Letrozole stopped working after 2 years 3 months.

If you have the same diagnoses and the same drugs for your 1st line of treatment and live in the UK, please let me know what was your second line. Thank you.

My dx is MBC ER/PR+ HER2-

age 47

postmenopausal ( oophorectomy)

lesions bones, liver, lungs

Many thanks and wishing everybody all the best!! 🙏

[GollyG]

Hi there, I went on a clinical trial after that regime failed for me. It turned out I was on the placebo but the useful thing was I learnt a bit more about my disease through enhanced blood tests - so I have gene mutations that made Fulvestrant and Piqray a good next line for me. Good to know how to target individual disease - maybe see if your team would do further investigations on yours?Best of luck,

Gill

[R7777 in reply to GollyG]

thank you for your reply Golly! And all the best to you!!!! Xx

[Garden-Lady]

My second line of treatment was Paclitaxel chemotherapy for four months.Now considering whether or not to accept a second round of chemotherapy with a different drug.

[R7777 in reply to Garden-Lady]

thank you for your reply Garden-Lady!

Was there a progression after the first round that you are thinking of the second?

Do you loose hair with this treatment?

[Garden-Lady in reply to R7777]

No, there was regression, fortunately, but further spread elsewhere. We're awaiting scan results.Usually people lose their hair with Paclitaxel. I was very fortunate that I only had a bit of thinning. My hair went all curly (dead straight all my life), and I lost my body hair, eyelashes and my eyebrows thinned.

Now it's growing back.

I may have had a low dose. The possible nausea was well controlled on treatment days, and I didn't have to take anti-emetics the rest of the time. The nursing staff were outstanding and I felt well card for.

I'm also following a herbal medicine protocol with a medical herbalist, as well as having mistletoe injections under the care of a GP trained in that protocol. Amazingly, my oncoligist is quite relaxed about the adjuvant therapies, and trusts me to ensure there is no conflict by consulting the excellent treatment database of the Memorial Sloan Kettering cancer hospital in New York.

I also follow an organic, plant-based way of eating. I did add some venison and organic mutton to my diet during treatment to raise the iron and protein in my body.

[Garden-Lady in reply to Garden-Lady]

I need to add that I have very significant peripheral neuropathy due to six years on Anastrozole, and the Paclitaxel made this much worse. It had caused the numbing and loss of feeling and function from my knees down including my feet, and now the numbing of my fingers. Constant pain like electric shocks. This means that I can no longer walk freely, need sticks, and have fallen several times.Unfortunately, even a consultation with a neurologist provided zero help. The doctors' attitude is benign disbelief, and that so long as my life is prolonged, any functional loss is acceptable collateral damage.

This is my main concern about having further chemo. I don't want to completely lose my ability to walk, or to use my hands. Think about it!

[R7777 in reply to Garden-Lady]

So you think the neuropathy was caused by the chemo?

I’m actually experiencing similar thing. I have a terrible pain down my left arm with pins and needles in my fingers. I thought it was associated neither the cracked vertebras in my neck area.. but neurosurgeon said nothing to operate… I’m puzzle as I don’t know where it’s coming from and I don’t want to be on morphine for ever ( 4 weeks so far).

[Garden-Lady in reply to R7777]

Imho there is a 'conspiracy of silence' regarding the frequency and severity of neuropathy. I feel the doctors have been gaslighting me for several years.

The Paclitaxel definitely made it markedly worse in a short period of time. I don't want to be on morphine either, with its bad effects on the gut and biome!

Please feel free to get in touch with me via my website so we can speak.

[R7777 in reply to Garden-Lady]

Thank you so much for all your info.

I also do loads of supplements and off label drugs. But I am not as fortunate with my onc. Who is dead against anything orthodox.

Where are you based in UK?

I’m in Cambridgeshire.

I’m thinking of going here and have the treatments completely personalised to my cancer

nagourneycancerinstitute.co...

[Garden-Lady in reply to R7777]

Hi, I am in Lancaster. My NHS Trust is Morecambe Bay University Hospitals Trust.If you would like to chat, check my website for details 'carpediemgardens'.

[Andersl]

HiI'm stage iv ER/PR + HER.

Postmenopausal.

I had immunotherapy for a few months then I progressed and went onto Kadcyla. No hair loss. Very few side effects until recently (2 years later). Now getting neuropathy so trying next dose down..

I'd be interested to know what your next treatment is once decided.

X

[R7777 in reply to Andersl]

Thank you for your reply! I have been offered only Faslodex injections.. hormone stoppers. I feel like it’s not enough. I also had my ovaries removed preventatively.

[Andersl in reply to R7777]

It's a patients right to ask for a second opinion. You could ask your GP to refer you to The Royal Marsden or similar specialist and renown hospital. I got a second opinion from RMH after my biopsy. That's when I found out I was stage iv not ii.Xx

[R7777 in reply to Andersl]

oh dear.. hope you are doing well.

So do I just phone up RM oncology department and ask to ge reviewed for a second opinion?

[Andersl in reply to R7777]

You need your Gp to do the referral as its done electronically. However worth phoning RMH just to check process

[Jessie55]

Also Piqray and Fulvestrant. After Exemethsane and Ibrance. Latter lasted for 18 months. Been on P + F for 5 months with no side effects thank goodness. In Lincolnshire

[R7777]

interesting! And you are ER/PR+ HER2- post menopausal?