Oil of Oregano & or Omega 3 oils while in treatment for CLL

[ncosto]

I'm 4 months in to ibrutinib treatment and feeling much worse than I did before starting treatment. I've been experiencing multiple fissures on my fingers. one of which got infected and has now settled in my bone. If the next 6 weeks of antibiotics don't clear it then it's hand surgery. And, I've got a sinus infection that won't quit. I'm seeing all of the specialists but am getting suggestions from the "alternate healers" in my life to add Omega oils and Oil of Oregano to my daily regiment. Just wondering if anyone has had an experience with the oils, while on BTK treatment.

[Miller1960]

Hello

Sorry to hear that you haven’t been feeling well since starting ibrutinib. Your infection on your finger sounds terrible, glad you are getting antibiotics.I’m also a person that uses alternative medicines to support my immune system. I’m sure you’ll hear from some of our more knowledgeable people on this support forum. My understanding of omega fatty acids is that it can be complicated on a compromised immune system, activating our white blood cells. It could make us more vulnerable. Not sure about the oregano I know it’s great for colds .

Keep us updated on your recovery.

Miller 1960

[lankisterguy Volunteer]

Hi ncosto,

As you probably have seen in your instructions for Ibrutinib, it acts like a blood thinner, so most CLL experts advise NOT to take Omega 3 Fatty acid capsules orally or aspirin since both are also blood thinners.

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The splits that start at finger nails and brittle nails with ribbed lines are common side effects of Ibrutinb and the other BTK inhibitors. I switched to acalabrutinib and later pirtobrutinib when Ibrutinib gave me lots of skin and nail issues. That reduced the symptoms slightly to bearable levels.

I still have the nail splits in very cold dry weather, and must use vasiline on the finger and thumb tips and cover it with cheap cotton gloves overnight every night until the weather warms up. Hand creams and reduced hand washing is suggested by my dermatologist. Phototherapy (light box treatments)are also helpful to calm my skin problems.

>

Len

[AussieNeil Partner Administrator]

This case study shows in figure 8 (attached), dermatitis and petechiae associated with ibrutinib use

Ibrutinib-Associated Nail Plate Abnormalities: Case Reports and Review

pmc.ncbi.nlm.nih.gov/articl...

I would not recommend taking omega 3 when taking ibrutinib or any other BTKi, because there's an off target effect of BTKis on the kinase in platelets, which affects clotting effectiveness. That's why it's not uncommon to have petechiae (pinpoint-sized spots of bleeding under the skin) or bruising when on BTKis. You don't want to increases your risk of internal bleeds.

See Dose-response effects of omega-3 on platelet aggregation: an observational study

pmc.ncbi.nlm.nih.gov/articl...

Topical application (rubbing on the affected skin) oil of oregano or omega 3 is probably preferable to taking them orally or taking antibiotics,

You could also try taking biotin or see if you can switch to acalabrutinib or zanubrutinib See healthunlocked.com/cllsuppo...

Neil

Ibrutinib can cause dermatitis, nail spitting and petechiae

[ncosto in reply to AussieNeil]

Thanks for the detailed response AussieNeil. I had done my research on the side affects of my drug, related to the open sores on my hands and feet. I am aware and am under the care of a oncologic dermatologist to help deal with these side effects. As I have a very rare form of CLL, the team of doctors is not yet ready to switch me off of the ibrutinib as it is the only BTKi drug with enough data to know that it crosses the brain barrier to the central nervous system. I was hoping to get some first-hand experience from others about use of the oils to boosts the immune system. I am not assuming use of these natural remedies will resolve the skin issues.

[Vlaminck]

I have taken both and, in fact, regularly take some omega 3 (cut back on it some because read it can cause lowered levels of platelet and that's my latest issue). But I am not on treatment. Oregano is pretty darn powerful, especially as an essential oil. My daughter in law took it when she had sore throat and worried strep and it cleared it right up. I google every supplement I take (like "oregano oil leukemia ncbi") just to check no special disadvantage. Neil just posted about effects of your medicine on nails and hair. See above. Good luck.

[mrsjsmith]

Hello,

When I started on Ibrutinib I soon developed split nails and skin around the nail that was painful. I am lucky that my local pharmacy is run by a Frenchwoman and she recommended Hexomedine that is a liquid antiseptic that I found to be amazing and cured the split skin, never to return. My hairdresser, also French, uses. You should find on Amazon.

Hope you find something that works because mine were painful and the difference with this liquid is it dried the split skin, unlike an oil that will just keep moisturised.

Colette