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Hello,

I have been on Ibrutinib 3 tablets of 180mg every day for 3 years, on a trial ,having previously had 2 infusions of various drugs which didn't work. The treatment seems to work well with few side effects accept the odd joint pain and a lot of itching which no one seems to be able to fix. Tried lots of creams but not really effective. Can anyone help. Also would like to find a clinic nearer to Tunbridge Wells doing the same trial to avoid all the travelling. Then maybe it could be trasferred.

Mike 1724

11 Replies

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  • It would help to know the name of the trial.. also the standard dose of ibrutinib in CLL is 140mg x 3... is you trial dose different or is it a typo?

    ~chris

  • Is it the itching for which you are requesting solutions? You don't say if you have a rash, cracks in the skin or nails, or just general itching.

    For the typical Ibrutinib related cracking and breaking fingernails, and splits in the skin around the nails, I have found it helpful to use shea butter, applied as often as possible if I don't plan to use my iPhone or anything else I care about. I add drops of Oil of Oregano for its antimicrobial benefit to help prevent infections in splits or cracks. Though that was keeping things at bay, it wasn't eliminating the symptoms totally.

    I started taking vitamin B2 because a deficiency causes symptoms similar to many we experience on Ibrutinib; for example, dry cracking skin, inflammation in the mouth, dermatitis, itchy eyes, etc. Not sure if I had a deficiency or if it's the drug that causes depletion of this and other vitamins. As a vegetarian turned vegan, it could be that I don't eat enough sources of this vitamin.

    After a month on B2, my nails are considerably smoother and stronger and growing instead of breaking off, and my skin is less itchy. Though I can't tell you for sure that there is a correlation, I'm going to assume there is and continue to take the B2.

    As for ointments, I have found Boiron's Calendula cream to be very effective in alleviating itches and rashes and bug bites. I won't use cortisone cream. Even my grandsons, who poo-poo my alternative potions and think me weird, stop scratching and complaining of itchy bites shortly after my applying the cream.

    Hope you find relief.

  • Hello, can you tell me the best place to buy the Boirons calendulas cream in the south of England or do you buy it on line? Mike

  • Sorry, Mike, I live in New England, not the South of England, and am not familiar with your sources. If you have delivery from Amazon or other online sources, you can order it. With free shipping, I find prices online beat local health food stores. And since I hate shopping and spending time scurrying around, I am an online-shopping junkie.

  • Ok.Thats good. It is on Amazon in $ of course with a longish , expensive delivery date but I will shop around. Many thanks again from across the water. I will let you know how it goes.

    Regards Mike

  • The bottle seems expensive, but lasts a long time when using only a few drops a day. Hope you can find some where you are.

  • Mike try CBD oil for the itching or dry spots, it will help if not fix. It's the best skin medication out there but you won't hear or get from a doctor. Also take CBD/THC oils under the tough as much as you can daily, this is known to attack bad cells and tgere are testimonials you can google that are very interesting. Might help. I'm dealing with Richters Transformation and aggressive Lymphoma, I'm hitting the oil a few times daily in between chemo treatment with the hope it helps, might never know but I don't care at this point. Everyone out there needs to study up on the benefits of CBD and THC.... Keep the research going!!

  • Hi Mike, Have you investigated Pembury Hosp? Some folks on this site use consultant there, I trot down to Eastbourne under care of Dr Grace, they might have similar trial. Worth trying even if you draw a blank! We are a resourceful gathering on this site.....also Higher Nature near Burwash is an excellent facility which might well stock calendula cream. I was put on steroids short term for extremely irritating rash, also took Piriton. Found some relief from old and very cheap remedy of adding oatmeal to bath (in a muslin bag!) Once you get over feeling an idiot sitting in dilute bowl of porridge, its actually very soothing!

    Good Luck.

  • Thanks for that. I checked to see if any other hospitals in the area were running the Admire trial and drew a blank.I also found some Calendular cream (5% anyway) at a homeopathic shop in Tunbridge Wells. It didn't seem to have any effect. The bath is out at the momens since we only have a shower,! All good thoughts .Thank again.

    Mike

  • Hi I'm interested in your post as I'm about to start ibrutinib 3 tablets a day not sure what dose yet. It's good to here it's working well any tips welcome

  • Hello,

    It seems to work for me. I feel much more energetic and over the 3 years I have been on Ibrutinib apart from a few joint pains, which only last for 2or3 days .If too painful paracetamol fixes it. The main side effect is itchy skin, legs,back and chest. This comes & goes but is very annoying. Tried various creams and find a hemp based cream works best but not always.

    Nothing really to worry about and if you can overcome these minor agrevations it should work well. My lymphocytes have dropped down to 9 having been 200 or so to start with. Total White cells have come right down and immunity is ok. Did have one or two spikes downwards with the immunity to start with but recently good. You have to watch out for colds , chest infections etc which may need antibiotics as soon as any wheezing is noticed.

    Good to have your GP on side and accessible.

    Good luck and let me know how it goes. Where do you have to go to see the-consultant

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