Small sores that will not go!

[Jooby59]

Just want some advice please. It’s my third month on Ibrutinib and all going really well. However, I have a few small sores on my hands, one on my nose and one on a buttock that just will not heal up. Saw a GP on Friday, never met anyone so bored by what I was saying 😠 and he prescribed Fusidic Acid cream to be applied 4 times a day. Now I know it’s only been a few days but there is not much improvement and the one on my nose (which is weeping & sore) seems to be getting worse!! Am I being too impatient? Has anyone had this? I know someone on this fantastic forum will help me. Thanks x

[WinJ3]

You need to see a dermatologist.

[Jooby59 in reply to WinJ3]

Mmm easier said than done - I waited 3 weeks for this GP appointment! I will see how it goes this week. Thanks for replying though.

[Newdawn Administrator]

Hi Jooby,

I’d side step the GP and ask if your haematologist could advise or refer you to a dermatologist. If you’re on Ibrutinib the oversight should be available. If necessary go through the Specialist Nurse first.

GP’s sometimes haven’t a clue about the serious side effects.

Best wishes,

Newdawn

[Jooby59 in reply to Newdawn]

Thanks - I will do that. They are only really small cuts/sores and not spreading but they just won’t go away!

The problem here is that you can hardly ever get to see your own GP and have to take whomever will see you - and that still takes weeks! x

[AnneHill]

Have you a list of phone numbers for the haematology helpline? They will speak to you and they will probably want to take a look at the sores.

I am in the uk and am shocked by the lack of knowledge about Ibrutinib and its side effects.

If I want a general appointment for a GP I have to wait 3 weeks but if I want to see someone tomorrow I can ring at 8.30. I am trying to see my own doctor to get continuity but unless its something they can treat, like an infection for instance, its a waste of time as you have found.

I have had red, painful patches but not weeping. They did clear up on their own but I had them looked at when I had a hospital appt.

I hope you get it sorted, Anne uk

[Jooby59 in reply to AnneHill]

Thanks for your reply. I will definitely get them looked at by someone else. The GP situation here is getting ridiculous - my own GP is extremely good when he is there!! Same day appointments are now being replaced by email contact - can you believe it??? x

[HailMary-USA]

Jooby, I have had success healing open sores with topical zinc oxide ointment from the first aid section of the pharmacy. (A thick white substance which is the primary ingredient in Desitin diaper rash ointment.)

But I have never been on Ibrutinib and have no medical background.

EDIT-- now that I've learned that Fusidic acid is prescribed for bacterial infections.

Will share that for 2 instances of skin infections over the past 4 years (one pre-diagnosis of CLL and one post-dx), I was prescribed a course of oral antibiotics which quickly cleared the infections.

Each instance of mine was just one localized spot of infection. Very spoiled here by easy access to physicians including walk-in urgent care centers open 12 hours, 7 days a week.

Worried that your non-healing, multiple infection sites may need further evaluation for a systemic approach. Especially with one area getting worse. The nose, lips, eye areas are especially critical for arresting infections ASAP. (So I have been told by medical providers.)

Please be vigilant and pushy about getting some speedy medical attention for this matter.

Wishing you good luck and quick relief.

Best wishes from Mary

[Jooby59 in reply to HailMary-USA]

Thank you for your informative reply - I will give them a day or two more and then seek further help. x

[Hoffy]

Oregano oil worked great for me with Imbruvica mouth sores. One drop on your toothpaste and toothbrush and brush her teeth after about a week the sores went away for me. Even one drop can be strong sometimes so rinse it with water first before brushing. For me it was cheap natural and work great!!!

Be well,

Hoffy

[Jooby59 in reply to Hoffy]

I started using this for mouth ulcers/sore patches a couple of months ago after someone on this site recommending it and it is BRILLIANT. I use a drop twice a day and my sore gums have never reappeared - and I had suffered for years. x

[Hoffy in reply to Jooby59]

Yes, It was one of the best suggestion I ever got. Use it 1 week and then I was done.

Be well,

Hoffy

[michaeledward in reply to Hoffy]

Shortly after beginning Ibrutinib treatment 5 years ago, I developed horrible mouth sores. I've been taking 500 mg of valcyclovir twice a day ever since. I going to give oregano oil a try. Thanks for the tip.

[joanne17]

An open sore is an emergency situation. You need to get to a specialist ASAP

[Jooby59 in reply to joanne17]

Not quite an emergency yet but I will definitely seek further help. Thanks x

[Redlion]

I have observed that the healing process of minor skin cuts, abrasions etc is significantly impaired and I put this down to a CLL side effect as I had it both before and since starting treatment. Since starting Ibrutinib it also affects nails and cuticles, nails become brittle and tend to crack and split, and cuticles tend to over grow and often become detached from the nail. In May/June this year I collected some fairly nasty bramble scratches to my arm and it was only within the last month that I can say that they have completely healed although the scarring is still very much visible.

[annmcgowan]

Hi I agree with Newdawn. I am on ibrutinib 20 months in and doing well.

When I need to I contact my haematologist or his nurse specialist, especially over GP matters. On these occasions the GP has responded well.

Good luck

Ann

[tonyfrench]

I've had "thin skin" ever since I started on Imbruvica (April 2018) and my left forearm is showing the "Battle scars" too

[Hoffy in reply to tonyfrench]

I know people that switch to 1 or 2 pills and many of their side effects go away. WBC is still good just less side effects. It is worth discussing with your Doctor.

The needed Dose is suppose to be 2.5 mg/ KG. For example if someone's weight is less than 130 lbs technically 1 pill is enough (= 140 mg) .

Be well,

Hoffy

[michaeledward in reply to Hoffy]

My understanding is that the recommeded dose of Ibrutinib is 420 mg per day unless side effects are intolerable.

[Hoffy in reply to michaeledward]

420 Mg is correct. 3 pills. Some people over time go down if the side effects get too difficult.

Be well,

Hoffy