Abemaciclib, finding ways to handle side effects

Hi

I have been searching for advice / info by users of abe ... for a while, I read your post and just joined as a consequence! I had breast cancer with lymph nodes approx 2010 prog to mets sacrum around 5 years ago. With prog beginning of this year to v small increase to sacrum and the muscle around my eye. I have been taking abe.. for a couple of months. The diarrhoea is relentless and I attempt ( not v successfully) to manage it by taking Imodium am/ pm when I take the abe.. thinking about access to toilets is now a priority when going out.  If v v occasionally I have been unsure or know I won’t be able to access easily then I have to admit have not taking tab am to manage this. Bad I know ! I knew re spicy foods high fibre to avoid but found your comment re IBS interesting. Do u get much nausea ? I find I am able to manage this ok. 

I have read stuff re diet but not excercise, I gets v tired so tend to conserve energy for practical things though want to prioritise walking my dogs at least u can go at my own pace 

all the best to you too x

Hi,

I have found that cutting out dairy and wheat has really helped the (potentially explosive!) diarrhea. A real game-changer.

My friend sent me an IBS, LOW FODMAP diet sheet, which I could send you a link for. Yesterday I broke my rules and had a Latte, boy did I pay for it. I have a drop of milk in my single morning tea which so far has been ok.

I use Almond and oat milk and rice crispies as my bland 'calm things down' comfort food, though there may be better things. I'm a real newbie and it's very much trial and error. Funnily spices and many fruits (low FODMAP) veg don't have a particularly bad effect, dairy and gluten do. I eat leafy lettuce and salad, quinoa (which I couldn't even pronounce before this) and rice salad. No bread. There are loads of nice things you can eat on the LOW FODMAP diet and it's been worth sticking to it as the difference is huge.

I do experience nausea when the diarrhea is acute. I find that taking Immodium intants when I get a threatening twinge, can sometimes head things off.

I now have high creatinine in my bloodstream, which is apparently another common side effect of Abema, so I'm steering clear of red meat and am careful not to exercise too vigorously as that can also raise creatinine levels. 

Good luck, I hope that you find this helpful. I have certainly had a much better experience since sticking to low FODMAP foods.

Very best wishes,

Andyv

Ah thanks so much for this info ! Weirdly I use dairy as a comfort food probably where I am going wrong ! I had cut out all dairy for a couple of years but when it became apparent that I oestrogen suppresants no longer working (progression of cancer) I just went back on dairy. So it won’t  be difficult to stop dairy again. I would really like the Foomap.

I love bananas esp when I have nausea my appetite is poor. Each time I go to oncologist I have lost weight - ok at present as I have a fair bit of padding. I have vv reluctantly have given up the job I loved which was so difficult but I now realise the side effects would have worn me down at work never mind the issues with sacrum etc

I have mild water retention and have just had horrendous systemic thrush being treated. (No sugar now ) i think it’s all around my severe diarrhoea. I will try foodmap- I have to get a handle on it.

and my very best wishes to you too

Hi there, hope all OK with you

I can't find link, although just Googling Low FODMAP diet gets some helpful info. I'll just jot down the list I use, it's not comprehensive so looking at other sites/ advice probably good. I notice some lists more extensive.

Some advice says to use these restrictions when flare-up then experiment with including more foods. I haven't done that as I find enough good stuff in the list and don't want to risk dire rear. (sorry, sick humour) 

This is just something which works for me, I might run it by the Macmillan dietician just to check.  I have found it helpful

Very best wishes and good luck

Andyv x

GOOD FOODS:

A. GOOD VEGETABLES

aubergine

bamboo shoots, bean sprouts, bell peppers, bok choy/ pak choy

carrots, celeriac, corn, courgettes, cucumber, 

lettuce, leafy greens

olives, 

parsnips, potatoes, pumpkin

seaweed, spinach, squash, swede,

tomatoes

yams, water chestnuts

2. GOOD FRUIT

bananas

citrus, cranberry,

strawberries, blueberries, raspberries

grapes, kiwi, kumquat, passion fruit, pineapple, rhubarb

3.GOOD PROTEIN

meat, eggs, fish,

nuts, seeds- pumpkin, sesame, sunflower

4. GOOD DAIRY

lactose-free dairy, hard cheeses

5.GOOD GRAIN

gluten-free flours, corn-based foods,

oats, quinoa, rice

REASONABLE FOODS:
1. REASONABLE VEGETABLES

avocado (although this also appears on BAD FOOD list so ??!!)

asparagus, broccoli, brussel sprouts, celery, 

fennel, green beans, sweet potato, sweetcorn

2. REASONABLE FRUIT

cherries, melon (except watermelon )

3. REASONABLE PROTEIN

almonds, hazelnuts

4. REASONABLE PROTEIN

almonds, hazelnuts

5. REASONABLE DAIRY

tofu, chocolate, soft cheeses

6.REASONABLE GRAIN

spelt

BAD FOODS:

1.BAD VEGETABLES

avocado, artichoke, beans, beetroot

cabbage, particularly savoy

cassava, cauliflower, chicory, 

garlic, hummus, leek, mange tout, mushrooms

onion, peas, radicchio, shallots,

1A. BAD PREBIOTICS:

fructooligo- saccharides (FOS), inulin, isomalt, maltitol, mannitol, sorbitol, xytol

2. BAD FRUIT 

apples, pears, figs, watermelon

papaya, persimmon, raisins, currants, quince

blackberry, dates

stone fruits: apricot, mango, nectarine, peach, plum, prune

honey,

high fructose corn syrup e.g. fizzy drinks

3. BAD PROTEIN:

pistachios, cashews

4. BAD DAIRY 

soy

5 BAD GRAIN

wheat, barley, rye, bulgar, semolina, couscous

lentils

just found this link, which is a bit more comprehensive

https://www.ibsdiets.org/fodmap-diet/fodmap-food-list/

Hi

Having a bit of a shitty day (literally) feeling a bit shot. I have upped my immodium.  It’s a relief to me that I could maybe control this to some extent. Fingers crossed. Thanks for the link and your list - realised its not FOD not foodmap ! 

I just hope that this med is effective in halting progress for a good while - I keep saying to myself it must be it has to be as NICE has approved it. And they put meds thru the wringer before approval. Is it your understanding that it’s approx 6-9 mths keeping progression at bay ? 

Hope u are ok too 

Hi there,

I'm so sorry that you're having such a tough time

Are you on 150 twice daily or 100 x2 daily? I'm cut down to 100 x2 because of low platelets and neutrophils.

I haven't been given any specifics timewise for how long progression can be delayed, I'll ask at my next Oncol appointment. I was given the impression that it could be longer than 6-9 months, I'll ask for clarification.

Abemaciclib certainly seems to have some good write-ups, the only problem being that it's quite recently approved so not much advice re diet etc.

Sending very good wishes and sincere hopes that the diet helps with the dire rear. I do understand, it's so horrible when it's happening, just sitting there while the world falls out of your bottom is NO FUN . Biggest hugs and hopes for BIG IMPROVEMENTS in the bottie department. Hang in there and well done for coping as you're doing in what sounds like a thoroughly shitty situation. 

Respect and admiration and hopes for real improvements, Big Hugs from Andrea x

Hi 

Thanks for your kindness x I am on 150 x2 - my onc hasn’t said 6-9 mths it’s just my trawling thru research the times do vary and their doesn’t seem any definitive but v wide margins which does make sense given all the variables. 

I have always found the American website breastcancer.org really amazing for info. I was checking it out last night and under abe ( listed under Verzenio ) they had this info : 

• You should not take a type of medicine called a strong CYP3A inhibitor because it increases the effects of Verzenio. This class of medicines includes antifungal medicines such as Nizoral (chemical name: ketoconazole). !!!!! I am on Nizoral x 4 a day and Fluconazole an anti fungal.

Going for my injections today will ask this might go some way to explaining my vast use of loo paper ! I wonder whether u shouldn’t make this thread into a group ? The search engine would then direct people to my woes and your brilliant info lol 

We cannot be the only ones on this med.

XXX 

Hi,

I was informed that the most common reason for reducing the dose to 100bd was severe diarrhoea, and that a significant number of people on the drug had dosages reduced for this reason. It sounds like a good idea to question the possible negative interactions of your anti fungal meds with Abema. I get the impression that many staff are on a steep learning curve as it's relatively new.

Thank you very much for the American link, I'll certainly have a good look at  it.

I think that prognosese are particularly tricky, mine have varied from 15 years to 2, so I tend to take them with a hefty dose of salt.

I think that making this into a group is a great idea. I've also contacted the Macmillan nurse to investigate if there's any dietary advice available,   if not it might be worth seeing if we can request that some clinical specialists put something together. 

Onwards and upward en? Take care and best wishes xxxx

Hi all,

I hope members of this group don't mind me posting here, but following the above discussion, myself and the team felt it appropriate to share a recent response from Donna, one of our Ask an Expert Nurses, which addresses the topic of this discussion:

Thanks for your message.

I’m not sure from your post if you’ve had a chat with your specialist team about the diarrhoea. If not, I’d suggest doing this without delay as they’d wish to know and see what they can do to help. It’s also important to tell them you’ve been doing the low fodmap diet.

Whilst you feel that cutting out certain foods works for you, we’d strongly recommend that anyone experiencing any bowel symptoms whilst on Abemaciclib, speaks to their specialist team. This would include the lady who responded to your post. Bowel side effects can become very serious if not treated appropriately. It’s also very important that the specialist team rule out the possibility of infection.

A healthy balanced diet is the current guidance for patients on treatment unless they have a medical need to be seen by a specialist dietitian. The low FODMAP diet is a complex diet with different stages and it’s not standard practice to recommend this to all patients on treatment. It should only be undertaken with the support of a specialist gastroenterology dietitian and is specifically designed for people with ongoing gut symptoms. There’s little research on the use of low FODMAP for treatment induced symptoms.

I’m a little concerned as you’ve mentioned cutting out dairy, as there can be long term health implications from doing this, if not necessary. The low FODMAP diet doesn’t give a recommendation to cut out dairy entirely.  If you decide not to eat dairy, you need to make sure you are getting a good source of calcium elsewhere in your diet. I’d suggest asking your specialist to refer you to a dietitian to discuss things further.

I hope this is helpful.

Best wishes,

Donna

Macmillan Cancer Information Nurse Specialist

I hope this helps,

Jimmy

Community Team