Bother

[Bramleys]

I was all set to start taking Acalibrutinib at the beginning of July and was happy with the choice. I have food intolerances, the major one of which is to maize. Acalibrutinib contains maize!!! Bother, Bother.

[HopeME]

Hi Claire:

I’m unsure how sensitive your allergy is but perhaps the maize in the pill isn’t significant enough to trigger your allergy? Maybe the doctor can start your treatment with a low dose to see how you respond. From everything I’ve read Acalabrutinib is an excellent first line treatment choice. I hope it works out to be a good treatment for you!

Best,

Mark

[Bramleys in reply to HopeME]

Thanks for your reply. I will mention this to my Dr.

[Shedman]

I would guess the most likely ingredient might be ‘modified maize starch’ - a useful source of starch that can be used in food etc etc as a binding agent / filler / to create maltodextrin as sweetener/ etc..

Is it?

I read that the main allergy of corn, is to the protein Zein — do you know specifically whether this is your allergy issue? [ie. do you in fact react to everything containing modified maize starch?]

It would be worth an email to the makers of Acalabrutinib to check whether this is an issue.. what part of maize it contains.. whether those with maize allergies commonly react / are unable to take it.

[SofiaDeo in reply to Shedman]

Since pregelatinized modified starch (whether it comes from maize or another source) doesn't generally contain the protein faction responsible for food allergies, I am not sure you will be allergic to the pill. Proteins aren't often used in drug excipients.

Here's the cause of the majority of the maize allergies:

pubmed.ncbi.nlm.nih.gov/110...

Here's the info on the starch component of the pills:

pharmainform.com/2020/11/st...

From what I am reading about the Starch industry in Europe, the protein factions are separated out and not used in the Modified Starches:

starch.eu/ingredients/

Note in the chart that the Starch Slurry is separate from the Protein faction. I am not saying cross contamination is impossible, but it seems highly unlikely, especially in pharmaceutical grade ingredients. The purity for that faction is held to a much higher standard than food. Pharmaceuticals are usually at least 98% pure.

Can you take OTC and other pill/capsule forms of medicines? Modified starches have been used for years/decades in the pharmaceutical industry. IDK if Maize sources are relatively new, or not.

[HopeME in reply to SofiaDeo]

Sofia:

Wow! Great research and problem evaluation. I’m guessing you were an A student during your school years.

Best

Mark

[Bramleys in reply to SofiaDeo]

Many thanks for your reply. You are very well informed. I have struggled with this intolerance for nearly 20 years and suddenly have to learn more about it. I cannot take trimethoprim, either tablets or capsules both of which do contain maize, but can take most brands of paracetamol which also contain maize. It is a puzzle and I have learned more from looking at the sites you provided than I ever have before, but no solution I'm afraid. If I was taking a tablet short term, I could risk trying it. Or if I could have a sample tablet of Acalibrutinib to try, but I don't think that is an option.

[Shedman in reply to Bramleys]

Again: the trick is now to email the makers of Acalabrutinib and ask them the relevant questions..

Do you tablet contain any corn protein?

Is it definitely very purified starch..

Do other patients report that this drug triggers a pre-existing corn allergy symptom?

They might just have a definitive answer - one way, or the other.

—Edit: However, a little more searching, and, much as it may relate to protein contamination of maize starch byproducts, dextrose, maltodextrin, etc, there are a lot of folks affected by such allergic reactions, with medical/allergy professionals puzzled by the mechanism, but observing that these byproducts cause some people severe reactions..

In fairness to you Bramleys , the Calquence/Acalabrutinib manufacturer response might not provide a definitive answer.. but still worth asking them. — I feel your allergy pain each time I spy (my allergy) egg within some food, where the majority of recipes do not require egg.. Of how manufacturers tend to opt for the easiest approach to making their product, or to improving it’s appearance/texture, and to hell with some minority of allergy sufferers.. this has parallels with entirely unnecessary food colourants [oft in pharmaceutical encapsulations], and across all foods.

[Bramleys in reply to Shedman]

Thanks, Shedman. I have contacted the manufacturer who did not know the answer but will try to find out. Sorry to hear about your egg allergy. It does rather eliminate all chance of eating out or anything anyone else has prepared doesn't it. No easy convenience foods or takeaways in this house!

[Shedman in reply to Bramleys]

Well done! Good to hear they will attempt to recruit you via a little homework themselves.. who knows, maybe this leads to future formulations free from cornstarch issues.

I quickly got used to my egg allergy — anything rather than to suffer swallowing difficulties.

I’m not sure which of you and me has it worse; I can eat many things, with most concern at sauces.. whether meat and veg, anything vegan, salads with vinaigrette dressing, even ice cream today oft sees a vegan option, though I’ve given up ice cream long ago, mostly for excess sugar! — and I don’t suffer anaphylactic reaction.

However, COVID19 sees me far less interested in eating out, at least, at eating out indoors.

I hope they get helpful answers on Acalabrutinib for you.

[Bramleys in reply to Shedman]

The drug company will only disclose the information to a health professional. And I don't go out much either any more. We have walked round a few beautiful gardens but that's about it.

[Shedman in reply to Bramleys]

Will they disclose to *your* health professional - your consultant?

Or to one of our key charities?

— worth involving any you can.. I’d do the same if it were of an egg component.

I’ve been out plenty, but I’m very wary of the exhaled air of others.. lucky to be fit and nimble — I’ll walk in the road, cross roads, take a long way around, just to avoid people..

This delta variant has me making more effort still; chance and being unlucky might take a long time to regret.

[Bramleys in reply to Shedman]

I had not thought to ask one of the charities. I think they did mean 'my health professional'. I am very naive - I thought all these things would be solved for me and when it came to my turn of needing treatment it would be easy.

[Shedman in reply to Bramleys]

I think you’re doing well with this matter. Our allergies can make us rather special cases, just as multiple co-morbidities can really complicate treatment plans..

My egg allergy sees that I am 8/1000 adults with the egg allergy..

..combine with CLL? Much rarer.

Do you know the statistics for corn allergies?

6 years ago I was still taking PPI (omeprazole) to reduce stomach acid. Happily for me, discovery of egg allergy and avoiding egg since, has allowed me to stop those PPI drugs — the gastro medics were not happy.. felt that my EoE was still present, that I still should take the pills..

4 years ago I got my CLL diagnosis.. and I learn that PPI meds are not advised with some CLL treatment options.. Glad that I resolved my reflux issue / PPI meds / egg allergy.

It is mostly worth a little effort, pressing helpful agencies to grasp your unusual/rare issues, and to send an email to pursue answers.. broaden awareness, maybe get more attention paid, and maybe get answers.

But we all may struggle with medical matters — stress before consults, before blood results, mid treatment, at any time.. I’ve had my meltdowns even on cusp of getting the best/latest medical scan..

One day at a time. You are doing rather well in pursuing this possible drug issue. [fail to insert applause emoji]

[Bramleys in reply to Shedman]

Haha - you read my mind - I don't know how many melt downs I have had this week alone and I feel so stupid and embarrased.Not glad to hear that you have had meltdowns too, but glad I am not the only one.😊

[Shedman in reply to Bramleys]

You touch on another aspect: whether to meltdown alone or in company? And I don’t really count a few tears as a meltdown - always when one runs out of patience with health/medical or related life/administrative situation/hurdles/explanations..

Almost in the CT scan, I came over all world weary: why this scan? why now? why not await later scan that was due at end of treatment?

Nobody has told me? (or had they? - I was confused)

Why, why why.. why me?

I fear, for very many of us, this is to be expected - certainly no medic had me feel guilty of it. They know what to expect, sometimes, perhaps unexpectedly.

But most of my meltdowns, with fundamental loss of confidence and optimism, have occurred alone, at home, insufficiently bolstered by a large slab of dark chocolate.. .. aware that other people are having a much worse time; my old version of treatment, using chemo (B+R), resulted in prolonged chemo brain fog.. which is easy to blame, but my life has a lot of changes the last 5 years, so who knows?

One day at a time. We are all in this together .. much as some of us have less common issues.. Stay strong inbetween!

[LeoPa]

Never heard of anyone being allergic to starch. Many are allergic to plant proteins.

[Bramleys in reply to LeoPa]

Its an intolerance I think. Lots of us have it and it is such a nuisance. Thanks for your reply.

[LeoPa in reply to Bramleys]

Unless you have severely deficient amylase production you should digest starches in such small quantities without issues. Can you eat potato? Carrots? Beets? Those contain lots of starches.

[Bramleys in reply to LeoPa]

I can eat other starches, thank you LeoPa.

[LeoPa in reply to Bramleys]

Welcome, then its the protein. We nailed the bugger 😊

[SofiaDeo in reply to LeoPa]

I think it more likely that if there is up to a 2% maize protein contamination, which is the upper acceptable limit for most pharmaceutical excipients contamination in the US, sensitive people may react. There are different "brands" of the modified starches, and one brand can have a slightly different contaminant profile. As evidenced by Bramleys' reaction to trimethoprim but not paracetamol. The different suppliers, as well as percentage of the modified starch used in the different medications, will affect the amount of allergenic plant proteins in a specific medication. So some brands/medicines may be OK, and others not. I don't know of any way to determine whether or not Bramleys will react to acalabrutinib until they try it. So perhaps treat the first few doses like a Gayzva infusion and be in a clinical setting with support available.

And get & carry an Epipen if you don't already do so. Because if you don't react to a batch of anything that is 98.5% pure, its possible to react to a batch that may be, say, 98.3% pure. Since the US requires 98% or more purity, there will be slight varations within legally acceptable batches. So its possible to suddenly "react" to a medication from a batch a year or so later, that has a slightly different purity.

[LeoPa in reply to SofiaDeo]

Yes, I think it must be protein intolerance if anything.

[Bramleys in reply to SofiaDeo]

On reading one of the sites you gave me, it sounds as though it is the 9kd lipid transfer protein that is the problem. It is also found in prunoideae fruits (peaches, plums, cherries etc) which are also a problem for me. I am in UK but think the standards in pharmaceuticals are probably similar. All these intolerances bubbled up after my hysterectomy 17 years ago. As I said before, I have learned more in the past 24 hours than over all that time. Thank you again.

[SofiaDeo in reply to Bramleys]

My understanding is that the UK purity requirements are a bit more stringent than the US, at 98.5%. And if you also have problems with other foods containing that protein, you seem to be on the "more sensitive" side of the spectrum. The UK formulation uses the maize based modified starch, as well as the US. Hopefully it will turn out to be OK for you!

[Bramleys in reply to SofiaDeo]

Thank you! 😊

[2016miniman]

Drink a lot of water every day!