Abemaciclib, finding ways to handle side effects

Hi 

I did indeed consult with my specialist Oncology team and they supported my use of the FODMAP diet. 

As you say the Low FODMAP diet includes some dairy such as hard cheese, it also  includes a number of non-dairy sources of calcium (leafy greens, almonds, fish - to name a few)

My friend who researched and discovered that Abemaciclib side effects are similar to IBS is a practicing GP. She supplied me with the list.

My Oncology team explained that for some people the diarrhea side effects of Abemaciclib are so acute that they are affecting their compliance with taking it at a therapeutic dose. and also, according to my team, dose reductions, for this reason, are common.

This has not been the case with me, however, the marked difference I experienced when cutting out milk and gluten has encouraged me to continue on this path. I understand that staff are on a steep learning curve and evidence is hard to find, however, it seems sensible to offer this as an option for patients to trail, with the warning re calcium as a rider. My team described the diarrhea as potentially life-threatening and sometimes leading to hospitalisation,

So I think that the risks need to be balanced out, ie trialing  FODMAP  whilst taking care to have adequate calcium (supplements are common) : versus continuing to ingest possibly inflammatory foods and risking acute diarrhea leading to sub-optimal drug dosage, hospital admission / serious medical complications.

I have not been able to find much advice re Abemaciclib and diet and would be grateful of any evidence-based information.

Best wishes

Andrea

Hi 

i read with interest the Macmillan post and your reply Andrea.  Just to update u first I went for my injections (faslodex etc) my bloods were all good ! So I am feeling rubbish and yet I am fine ! Mmm ! Discussed diarrhoea, abe has been stopped till I get down to 3 episodes a day. Usual discussion re fluid intake etc. Just been phoned by my nurse to check on me and advised to go to acute onc clinic Monday if not abating. 

I am so used to just asking the oncologis, nurse or go on Internet ( v cautious re sites I read) to get a vast bank of info I especially like reading patients actual experiences/ways of managing. But clearly with abe this is not the case

Regarding dairy, in all the time I was dairy free my calcium levels were good. I used foods high in calcium to supplement. Hopefully any sensible person would do this. I feel strongly in taking control of my cancer is one of the ways I cope. I see my oncologist as the expert but ultimately I have to steer my own ship as it were. 

The aspect of the diarrhoea is that the usual ways of managing it just don’t touch it - so we look for safe ways to see what works for us. So yes it would be so helpful to have advice re abe. 

Best wishes to all two of us xxxx 

Hi 

Oh I do hope that this diarrhoea resolves soon, you are being really brave about it but more than x3 daily must be a nightmare. My dose was reduced because my bloods were off, but my Chemo coordinator said that they do most commonly reduce it because of diarrhoea.

So one way or another you could hopefully have some improvement soon. Massive respect to you for the way that you are dealing with it, and I'll keep my fingers, toes and anything else I can think of crossed that there is improvement 

Very best wishes from the other half of the Abema grotty gut club, may the fawcet be with you xxxxxxxx

Hi

I know it’s really affecting me day to day now I am SO tired I do a bit then rest.  I am determined to avoid having to go to the acute onc clinic ( nightmare parking ) but needs must !! 

I was thinking about why I have just been gritting my teeth re diarrhoea and just trying to manage it myself to some extent.  Our level of tolerating discomfort /pain /emotional stress etc is much higher than the average person  don’t know if y agree ? for me 10 years is a long time to build up some kind of resilience. 

You sound as if you have a research/ science background in the language you use do u find this helps ? 

I have looked up some research re reduction of 150 to 100 and it does not seem to diminish effectiveness so I think I will request this. That or a cork ! 

You are so lovely the way you have embraced my awful saga and are supporting me hopefully it will soon come to an end. 

xxx 

Hi,

Thanks for the kind things you say in your email, I think that you're incredibly brave and stoic, it's good that you are getting some help though. The stressful parking resonates with me too, our place is a nightmare to park. Apparently there was a punch up in the carpark last week, all incredibly anti therapeutic and not what the doctor ordered at all.

. It sounds like improvements in the dire rear could happen one way or another. As my lovely Breast Surgeon always says: ' Just keep paddling '.

I used to be a Neuro OT and worked on Critical Care, also I have 2 doctors as dear friends so I get help and support and useful info. I liked what you said about taking control of cancer any way that you safely can. Absolutely! I have, like many patients, picked my way through sometimes conflicting advice. My Oncology team is good, but they are human and dealing with a complex disease which is, thankfully for us, evolving new treatments at a rapid rate.

I find our discussion really helpful, your research is very useful.and your positive attitude, you're a great role model. 

Very very best wishes and hope that things improve and that you do NOT  need a cork (make it Champagne if you do, because your worth it)

Andrea xxxxx

Hi 

What a lovely reply -  thank you so much  xxx

well it has a happy ending .... my end is happy IT is abating. Only 3 times today!!!!!! I am sure it’s just because I have stopped abe. Me and my bum have made an executive decision - no abe restart for 3 days. No toilet roll in bag in case loos don’t have any !  When I first started abe I trawled for meagre info and I cut and pasted this on my ph notes. I don’t know where I got it from but I am going to use it when I start up again. Note this is NOT a recommendation to anyone I haven’t tried it check with your onc/ nurse prior !!! 

An aggressive proactive regimen of:

- high-dose loperamide/Imodium (4 mg but NOT ever de-escalated down to 2mg (and up to 16 -32 mg daily); 
- "Big Pink" (Petpto Bismol Extra Strength) used in "priming" mode (started on day 4 and also used for immediate relief during loperamide dosing; 
- budesonide (Symbicort) for recalcitrant cases; 
PLUS "adjunct interventions:
- high-dose probiotic (28 billion microorganism count in two divided doses), and 
- electrolyte powder (most of the refractory diarrhea was analyzed to be secondary to disturbed microflora and electrolyte imbalances) 
- at least 12 8 oz glasses of fluid daily, 8 of which should be electrolyte-enhanced

no idea what Symbicort is ? But will find out.

i was an orthopaedic OT until couple months ago ! I would prefer to be a role model of something else !! Just muddling thru ..... 

Do you have any other symptoms you find difficult to deal with ?

Amanda xxxx 

Hi

GREAT news about dire rear reduction, well done. Enjoy your break from Abe 

Thanks for the info re aggressive proactive regime, really good to know.

I don't seem to have any significant side effects now I'm on 100 bd, other than intermittent, sometimes severe fatigue following any significant increase in activity .I really have to pace myself, but I feel pretty good a lot of the time if I'm reasonably careful..I occasionally get diarrhoea, less than once a week,  but it (so far) responds well to immodium instants.

When I was on 150bd I had significant levels of fatigue a lot of the time, lower limb weakness and reduced appetite and joint pain in shoulders.. I also felt bloated after drinking or eating so really had to push myself to drink enough, unusual for me as customarily drink lots of water. My platelet levels tanked then my neutrophils did. I basically felt about 90 years old.. I had diarrhoea sometimes with cramps every two or three days, sometimes with nausea. It nearly always responded quickly to the loperamide (x2 capsules immediately then rarely needed another one if  another episode) So diarrhoea not a major problem but fatigue and muscle weakness most unpleasant. 

I had a break for 2 weeks then restarted at 100bd. The difference was pretty dramatic. As long as I pace myself I have a good quality of life.

I hope that all continues to improve with you, maybe you could reward your self with a glass of Champagne even though you no longer need the cork.

Very best wishes and thanks for the really useful info xxxxxxx

Oh and what are the odds of you being another OT? Small world eh?

Hi

all diarrhoea has stopped I feel normal almost forgot about it all till someone said to me yesterday rather concerned “ when are u going back on your cancer meds “ - it’s been a week now since I stopped I didn’t do what the onc said “ start up again when only 3 episodes a day “ so reluctantly I am going to tonight with 2 Imodium not the usual 1 - and try the regime, my aim at next appt  2 sept is to ask if I can do 100 mg instead. 

I think the weakness in lower limbs as u described is exactly what I found steps/ stairs almost painful with the effort, burning sensation. I realise how exhausted I was ... it’s been a good break but .....fear of progression is like a wolf snapping at my heels....well Birkenstock’s  

all the best x

Amanda 

Hi 

quick one I am going to do “the regime” but NOT  the Symbicort this is an inhaler for asthma ? ??- I will take omaprozole ( not the “ big pink “) for acid reflux i did have this when on the abe but it seemed unimportant it the face of the diarrhoea so I didn’t take anything. But I know one less symptom will make it more bearable. I have Yaklut drinks  for probiotics - not proven to have any in but it is a comforting ritual. And definitely electrolyte drinks I just ate crisps ( for salt ) last time. I will drink loads of fluid as last time. 

So all prepared and ready 

i will report back in couple of days 

xxx

Hi, 

Oh I do hope that you get settled on something that works for you. Good news about the diarrhoea, I hope that continues. Do they have specialist dieticians in your team? (I've no idea if mine has them) as this is quite niche and new territory and it would be good to have specialist support and advice. (Preferably not just quoting  generalities.)

I have found that cutting down to 100 Abema bd has made a huge difference with bowels and lower limb weakness and general energy levels. (Although there is the possibility that my body may be adapting to it I suppose, aargh so many possibilities) I'll soon find out if it's optimal dose to do the job.I know what you mean about progression snapping at your heels, I'm getting PET scan result tomorrow and as I'd had a bit of spinal progression last time I'm a bit apprehensive.

So fingers, toes and everything crossed for you, it would be great to think that we might both be settled on this in a short while, having some predictability for a bit would be great wouldn't it. 

Take care and just keep paddling,  

xxxx Andrea xxxxx