Thank you @bordercat, that’s really useful.
@lola25 I had chemotherapy. One tumour 3cm 15% KI grade 3 and some limited nodal involvement (had complete response from chemo). No oncotype as I had neoadjuvant chemo due to nodes.
I would have qualified for Abemaciclib and was due to start in January, but was worried about the side effects and QOL. Luckily I was able to access Ribociclib under my insurance. Apparently there is no or little difference in the effectiveness (ie chances of being alive at five years/recurrence) and therefore a no brainer for me to push for Ribo. However as mentioned above Ribo is available for patients with no nodal involvement unlike Abema so this is a massive change. You have to start Abema within three months of the end of treatment and Ribo within 12 months.
The studies are based on you taking one CDK 4/6 alongside an AI. The issue for me atm is the AI
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Just a quick update to say finally after 4 week break,my ALT is down to 79 and can restart ribo, albeit at 200mg. The 4 week break has also given my neutrophils a chance to recover. Felt tired with high ALT but no other symptoms.
Just wanted to post to say not to worry if you have to have treatment break, hopefully with time things settle and everything recovers.
Hope everyone ok.
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That’s good news x
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I thought you might find the below graph useful to show when you’re most at risk from infection
I’m on day 14 (red) and my neutrophils today are manageable but lower than two weeks ago (green phase). I didn’t appreciate that we are given the “week off” to allow our immunity to recover.
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Hi everybody - hope everyone is keeping well.
At last I have started again after nearly a six week break. ALTs reduced eventually and I have commenced on 400mg today 
And the sun is shining 
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Fantastic news. Pleased for you, all the best.
Another sunny day. Love to all
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Hi all, I feel a bit of a fraud posting on here but I have found the information useful. I have secondary breast cancer and have 600mg a day. My neutraphils are 1.2. The thing I suffer the most with as a terrible rash. I am on 5th dose of Ribo. Has anyone had the rash and it has gone on its own accord or did you have to reduce the dose.
Lee
Hi Pug, I just don’t understand the “to qualify for” bit in her email.
Hi all
Just had my first yearly check in (all clear ! 
)
Onco has said NICE are approving this beginning of June (published on the NICE website guidance coming out then)
My next check up is mid/ late June to discuss consent etc
He did flag it was “harsh” but not as harsh as chemo to the body
How did you all decide yes?
I was up for it but now wondering if this has more risks than I anticipated
Any personal exp welcome
X
Hi
I’ve had no rash so can’t help sorry.
My neutrophils were under 2 this round. I’m now on cycle 3. I’ll report if I notice one.
My worst symptom is fatigue but that could be Letrozole.
Sorry to hear you’re going through this x
Hi
No brainer for me. Side effects have been impact on neutrophils and fatigue.
If I had a choice I would take this over Letrozole any day but I don’t really have that choice if I want to improve my chances of not having a recurrence or secondary.
The medication is incredibly expensive for the NHS and it’s a huge step in the fight against breast cancer and recurrence. It will save lives
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Thank you for this
My onco did stress in regards to “distant” reoccurrence this is a game changer
I was just surprised he also stressed the SE and to think about it.
Mainly:
Fatigue
Diarrhoea
Risk of infection (but not as bad as when I did chemo)
So curious what women here encountered
And same re Letrozole - hate those pills ! X
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@leelaloo1 Not sure why you feel a fraud, everyone welcome and equally valid 
I have not had a rash but I do sometimes get really itchy scalp and neck, occasionally with little ‘bumps’. I was told to try taking an antihistamine and that did help. Hope you get it resolved soon.
Wishing you all the best
@idcand49 Glad the yearly follow up all good, always a stressful time. As @jbb says, no brainer and it will save lives.
The 4 year clinical trial data was released about 11 months after my last radiotherapy. So, apart from AI/Prostap/6 monthly Zometa, it was a long time since ‘active’ treatment and did have concerns about ‘starting’ again. Monitoring for the first 6 cycles is quite intense, especially if working and/or hospital is a long drive. However, it is such a game changer though, that it was an easy decision to make. I had 2 grade 3 tumours, no node involvement and so oncotest showed no benefit for chemo. So always had that niggle as intermediate risk. Ribo has at least 1.5 x benefit of the AIs, possibly more.
I started last December, my main issue has been high ALT (liver enzyme). This resulted in a 4 week break and a reduction in dose to 200mg. During this time, I was really tired but still able to work/do things out of work etc. Just had my first cycle on lower dose and not had the tiredness, so fingers crossed ALT behaving. Will find out on Tuesday.
Like most folks, also have low neutrophils (dropped to 1.2). This, fortunately hasn’t caused any issues. I had a cold in December, but no worse than previous colds. Last week, we had a family trip to Italy for a few days and all good.
Apart from the benefit, the main thing that helped my decision making was that the data shows all the side effects are reversible, when you stop. When I had my 4 week break, my neutrophils recovered. For most people (not all) this drug is just another weapon in stopping the cancer recurring, it is not ‘curative’ e.g like surgery/chemo/radiotherapy etc. Worse case scenario, if you get side effects you can’t tolerate, you can dose reduce or stop altogether. It makes sense to try, worse case you stop and then in the same position as if you hadn’t taken it. I hope my ALT behaves and I can stay on it, but if not, then I know I tried. For me (everyone is different though), that is really important, that I did everything I could to try and stop it recurring.
All the best
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Hi everyone, me again!! So after a five week wait for ALTs to return to normal I started cycle three on 400mg but within four days had to stop again because the ALTs elevated again.
As this is my first line of treatment my oncologist has decided to stop Ribo and start me on Palbociclib instead - apparently it’s kinder to the liver 
I did have a CT scan after just two cycles and been on Letrozole since January and there is a reduction in all the tumour sizes which is amazing because I was so concerned that I had missed out on so much Ribo
So I will be leaving this group now - it has been so helpful while I have been on the Ribo journey and wish everybody the best and a healthy future.
Take care everyone xx
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Thank you for these words
I’m all up for more amoury & see how I get on
The hospital is close (phew!) and I work M-Thu so can either make up time or perhaps have bloods Thu & make up the time
Did you lose hair?
My hair is finally getting thicker again after chemo
X
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@puglover56 Sorry to hear that ALT misbehaving. Really encouraging CT results though. Glad you have an alternative treatment. Wishing you all the very best.
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@idcand49 No hair loss. Good luck!
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Hi there. I periodically get rashes and itchiness, and my BCN advised taking antihistamines which help. Fexofenadine (sp?!) was her recommendation. I am on the 400g a day (3 weeks on, 1 week off) routine. I would talk to your breast nurse and see what they advise, hopefully you can get some relief.
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