Still new to the forum but I have started with Ibrutinibe.

[2017cll]

First hi to all, them this post is for let you know about my jurney with IB, the ups and downs and I will use this post too see my milestones achived. So from 14-10-2020 I start with 420mg daly dose today 19-10-2020 I've to say I see same improvements on my lumps without side iffects apart from light headache some mornings or naights. 22-10-2020 will go back for blood work. Now i would like to ask your opinion on food intake since the doctor told me to avoid arange of sevilhe !! and some other plant I can't remenber the name, so your imput is apreciated, thanks.

[caven]

Avoid grapefruit, too. See for additional information the article 'Grapefruit is one of the weirdest fruit on the planet' (an easy read for lay folks such as most of us HU/CLL members) that describes grapefruit drug interactions ~~ none of which are positive for humans!

See: atlasobscura.com/articles/g...

Caven

[mrsjsmith]

Hello,

Also Seville oranges, St. John’s wort and fish oils. You should have a product information sheet inside your package. I assume as you are in Europe yours are also from Janssen ?

Two and a half years now and only minor side effects. Wishing you well.

Colette

[LeoPa in reply to mrsjsmith]

Fish oils? Does that mean sardines and wild caught Mackerel are forbidden too? What about cod liver?

[mrsjsmith in reply to LeoPa]

Not fresh fish but ‘avoid supplements that may increase your risk of bleeding such as fish oil, vitamin E or flaxseed’

But are you on Ibrutinib ?

[LeoPa in reply to mrsjsmith]

Thanks! No, I'm on W&W but learning all I can in advance so I'm ready if and when I need the knowledge. Hopefully never 😊

[ANA4 in reply to mrsjsmith]

Thank you so much for above information as I used to take flaxseeds to avoid high cholesterol. From above I have to stop taking flaxseeds while I’m on ibrutinib

[mrsjsmith in reply to ANA4]

It’s difficult to keep a sensible balance but I was surprised at how much easier I bleed now. Something as innocent as a blister from new shoes left a trail around the house. Is there something else you can take ?

[virdieblue]

No grapefruit or starfruit. I don't know of anything else.

Virginia

[2017cll]

Thanks for the replys @ mrsjsmith I don't have the information sheet only be given a weak dose.

[mrsjsmith in reply to 2017cll]

That is very unusual, you should be given patient information with every prescription. Ask pharmacy or look online and McMillan have a very simple fact sheet. macmillan.org.uk

[GreyB]

I was told to avoid seville and blood oranges and no orange marmalade, no grapefruit and no starfruit, not that I have ever seen a star fruit. I started on ibrutinib a few months ago and the swelling in my neck and a lump under my armpit disappeared after a couple of weeks

Hopefully will be good for you

[morepork]

Pomegranate and its juice is another food mentioned to be avoided while on Ibrutinib.

There were also mentions of drug information inserts with our dispensed Ibrutinib.

Well there are no inserts given with the Janssen Ibrutinib as dispensed in NZ.

In fact I have never been given drug information inserts with any of my dispensed medications, so I look the information up online.

[mrsjsmith in reply to morepork]

Morning morepork,

I find that very worrying. I don’t think of the NHS as being super efficient but looking through what I receive there is an information sheet in every single prescription. What would someone without a computer do ? I find them very useful and often double check.

Colette

[morepork]

Hi Colette

Yes you are right, and I am going to ask the local Pharmacist about the practice here (not to include such information). Although my Ibrutinib is dispensed from Australia via the hospital pharmacy here so I should ask the haematologist as well.

Cheers

Stephanie

[debdetermine58]

WELCOME!!!🙋‍♀️🤗😊 2017cll Good Luck to You!!! Wishing you a great Health journey☘🏋️‍♀️🤗.

[2017cll]

A update with some consernes, hi and thank you for the reply now after 7 days I gotI ask another visit to the doctor and after I complain about some lumps that came ofter 6 days on Ibrutinib we send to test again this time for LNH agressive, I know this lumps are not related with CLL becouse they apear after most my lymph nodes got away at was amazin in only 5 to 7 days on the bigest lump it have a brusing and on my knee a smale one with brusing and star to apear on other places, so I ask if any of you have experienced anithing similar, thanks for any reply.

[MsLockYourPosts Passed Volunteer]

Do you have the results of a Flow Cytometry test, which would have been the test used to make a diagnosis of CLL back in England? It would seem unusual for your doctor to start treatment if your diagnosis has not been confirmed.

It seems that there are some basic questions that you need answers for. How was your diagnosis made? Blood test or biopsy? What concerns did your doctor have to cause you to start treatment? Lymph nodes? Low hemoglobin or platelets? An absolute lymphocyte count that was doubling? You said something about low dose in another post. Were you started on a lower than 420mg dose of ibrutinib, and if so, why?

Is your current doctor a hematologist specializing in blood cancers or a general oncologist? I hope that you we’re not misdiagnosed, but if your original diagnosis had been ALL, and you were not treated, I don’t think you would still be with us. ALL is very aggressive. Please let us know what you find out. I hope that there is a simple, treatable solution for your issues.

[2017cll]

Hi MsLockYourPosts, I don't have any, but in 2018 I done a biopsy on my right groin since the lymph are the biggest at the time and this been confirmed in Addenbrooke's Hospital, so I been on wait and see, were in Portugal since the lymph are in so danger of causing more health issues with the spleen being the most problematic about 7cm bigger in size and because I have a mutation it could develop to other more aggressive Lymphoma. About the concerns of the doctor: first the spleen over the size easily if I have a accident it could split, then the lymph nodes in the main areas; groin in both sides golf balls with left leg getting a 10cm ou so of lymph, arm pits both sides golf balls maybe in the left bigger and neck well how I describe it maybe close to two necks so a big concern for me and of course the doctor, the reason for me to joint to this forum and ask about Ibrutinib. Let me say I'm glad that I start Ibrutinib since this is not the first defence in England at list for me.

[MsLockYourPosts Passed Volunteer]

The Flow Cytometry was probably done as part of your biopsy in 2018 if the doctors said that CLL was confirmed. Based on your description of your spleen and nodes, treatment certainly makes sense. I hope that the Ibrutinib starts doing it's job and the nodes and spleen start shrinking very soon.

Your doctor is probably testing to rule out a transformation to DLBCL (Difuse Large B Cell Lymphoma), not ALL. Let us know how your tests come out.

[2017cll]

Thanks again MsLockYourPosts, Ibrutinib is working at lest in most lymph nodes are gone and the spleen I still can touch but not maybe as big, will let know about the test.