After 8mos. on ibrutnib; blood just about normal and no swollen nodes.
But my finger tips have swelled/angry red and painful... onychomycosis.
Has anyone successfully dealt with this with topical anti-fungals, etc. and without taking the internal meds (with more side effects related to liver,etc.)
I started to have rough, dry, finger tips during the fourth week on Imbruvica, including splits in the skin next to the nail. I awoke one day with splits on 8 fingers. I have Raynaud's, with poor circulation in my extremities, so I'm accustomed to splits in the cold of February -- not when the temperature is around 80!
I've been using two things that have been keeping it at bay, though a split opened yesterday after days of cooking and raking. I started by applying Bag Balm at night, and wear thin cotton gloves while sleeping to keep the greasy salve in contact with my skin. The Bag Balm doesn't have as bad a fishy smell as Vitamin A&D, though there is some slight smell. As effective as it is, Bag Balm has a vaseline-like base, and is too greasy for me to wear during the day.
So I bought a tub of pure Whipped African Shea Butter on Amazon. The brand I have is whipped by hand by women in Ghana from shea nuts. I like this pure brand, which doesn't have other ingredients in it. It's a thick cream with a mild nutty aroma. I spoon about a 1/4 cup, of the butter into a small jar and add 6-8 drops of Oil of Oregano, purchased on the web, which has anti-microbial properties. The small amount of oil lightens the creaminess of the shea butter, helping to spread it on my fingers and hands, and I hope will help prevent infection. I keep one jar of it in the house, and another in my car, and use it whenever I begin driving.
I find that working the butter into the tips of my fingers, nails, and cuticles keeps the skin softer and smoother, and my nails feel stronger and shiny. It took a few weeks of use of the Bag Balm and Shea Butter to lessen the skin roughness. The small amount of roughness that remains fluctuates depending on my activities - I cook a lot, requiring lots of dish washing, and I do a lot of gardening, so I'm not so kind to my hands. When gardening, I apply shea butter to my finger tips before donning surgical gloves, which I wear inside my garden gloves. Sometimes I use it inside the cotton gloves when sleeping, alternating with the Bag Balm.
Even with combinations of Bag Balm and Shea Butter, the skin right next to the corners of my nails feels hard rather than soft, though as long as they are not splitting, I'm happy. Because of the fluctuations in dryness, my iPhone often has difficulty recognizing my fingerprint for sign-in. As the skin changes from rougher or smoother, I have to keep changing the fingerprint input. Pretty confusing for my poor phone.
By the way, I also put a couple drops of Oil of Oregano on my toothpaste when brushing my teeth, which has helped in keeping mouth sores at bay.
Hope this helps! Particularly when under control, I figure this is a nuisance I can handle in exchange for melting nodes and better labs.
Great ideas from starafta, will use them. i garden and got a tiny sore that would not heal. turns out this was Sporotrichosis, an uncommon fuingal infection, frequently from rose pricks. Responded well to oral antifungal, during which i had to stop/ modify intake of Ibrutanib as medication potentiated Ibrutanib effects.
Now i have a wide selection of gloves in my garage, pretty much always put on thin disposable surgical gloves then waterproof , heavy or leather gloves depending on job.
I have been on about 4 months. Like you nodes almost back to normal and blood...OK, not worse not appreciably better.
In the last 6 weeks or so I've been dealing with the cracked dry spiltting skin by my nails. I thought at first it was just dry skin due to moving saesonably to dry Arizona. But after a trip to humid Florida, still dry and cracking.
I'm using lotions regularly, the stuff for dry skin on feet seems to work and also I think may have less alcohol than hand lotions.
Ive also ramped up water consumption to almost a gallon per day....great benefit from initial increase in consumption when I started imbruvica...my chronic dry eye was cured...no more Restasis
There is a laser treatment that claims a lot of success for treating fungal nail infections:
It might be worth seeing if there is a chiropodist or podiatrist in your area that offer that treatment.
so far ive got broken split nails.and badly dry skin on both legs. the nights are hell in bed .as i cant bend to put cream on them or my feet. ive started to use Avon spray dry oil .its been two days useing it seems to be working ,cross fingers
I do not have CLL, but my husband does which is why I joined the group a couple of years ago. If you live with a partner I would recommend that you use separate towels to prevent your partner from acquiring the infection too.
The reason I suggested going to a chiropodist or podiatrist that offers lunula laser treatment is that I have had fungal infections of my toenails for the past few years (luckily my husband has avoided acquiring it too) and have tried various treatments without success. The laser treatment is not invasive and does appear to be working for me. The treatment would work equally well for fingernails too I would imagine.
I feel for you with all the problems you have with your legs and feet. I am sure the chiropodist would also assist with your split nails etc.
Good luck and I hope you feel more comfortable very soon.
thankyou ever so much .its nice to have help .from somone thats been though it x
I am in my 6th month of Phototherapy (light box treatments with only UVB exposure for 4 minutes several times per week) controlling Psoriasis & rash that got significantly worse with Ibrutinib.
Since my CLL diagnosis I've had skin rashes, petechiae, and various skin issues that worsened with every treatment for CLL. Multiple skin biopsies always found abundant CLL cells & T cells in a specific skin layer, and the pathologists suggested many different possible causes including eczema, psoriasis, Seborrheic keratosis, and drug reactions - blamed on the CLL treatment, etc.
Each winter I had painful skin splits starting at the edges of my nails. I tried numerous creams/moisturizers and many topical steroids to get some relief but no miracle cure.
I am now on 1 light box treatment per week, since my arms, legs and trunk have improved dramatically despite current CLL treatment with Venetoclax. I plan to continue weekly phototherapy through this winter in hopes that will also control the skin splitting on my hands.
Len
Hi Suz,
Just a suggestion but you'd be better to remove that post to Len and send your personal email address by private message particularly as this post hasn't been restricted to the community and will be visible widely on the web. Too many weirdos out there!
Regards,
Newdawn
CLL and Hip Replacement Surgery
Best front-line treatment(non-chemo) for CLL with no 17p deleton/TP53?
