I consider myself fortunate, now in year 12 on BTK inhibitors with low, but adequate blood counts and a reasonably good quality of life that includes travel and a range of physical activities like biking and kayaking. This after Fludarabine/Cytoxan/Rituximab x 5 with only a brief response. Starting on one of the first phase II trials of ibrutinib in 2012, now on acalabrutinib, it's been a good run. My big problem is the immunocompromise that accompanies CLL and its treatments, especially the FC regimen that damages bone marrow stem cells.
One non-life threatening, but bothersome problem for me is the many warts on my hands, feet, elbows, and other areas, typical for unrestrained human papilloma virus (HPV) due to weakened immunity and my known B and T cell defects. These are really annoying and disturbing to me. I've tried all the known, unsatisfactory treatments offered by dermatologists ranging from freezing with liquid Nitrogen to Curad patches, fluorouracil, and Duct tape. Aggressive freezing works sometimes, but can cause a lot of pain and bleeding. And the treated warts recur later on: The virus is still there! It seems the warts are taking over!
In my dreams I'm funding a start-up with interested virologists and lab investigators to develop an effective treatment, perhaps an antiviral(s) against HPVs - all 150 or so types!!! Find some common point of attack! Warts are a very common skin problem, but for me they are out of hand (and feet, and elbows.............)
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Bluesinthenight
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Hey Jeff, I have non-mutated IgGH, normal p53, and a SAM-HD1 deletion/frameshift mutation. Nothing else of note. The SAM-HD1 mutation is of unknown prognostic significance and is only 7% of known cases from what I've read in the literature. No one knows what to make of it.
Funny 🙂but not so funny, right...My daughter had warts on her knee and we tried absolutely everything, just like you said. They were spreading and it got to a point I decided to try any remedy I would come across. Guess what - we managed to get rid of it by applying a clear see through nail varnish all over the wart. Every single evening I would apply a new layer. It looked like dry skin, as it was see through, so not too bad and didn't make her too self-conscious. I felt like nothing was happening but I kept on applying the nail varnish for weeks and weeks. Sometimes the dry varnish would peal off, sometimes I would peal it off before applying a new layer. It seemed to be getting smaller...then one day, after weeks of us doing it, I pealed the dry varnish off to apply a fresh new coating and it was gone...this was last year and they are still gone. I even made an appointment to see a dermatologist but it was gone before we were able to ask for her help. She confirmed they were definitely gone and was surprised to hear about the nail varnish procedure 😁my daughter is not immunosupressed but perhaps worth trying?
I am with you on this one, I had fcr in 2015, now on acalabrutinib and I have the wart plague. Seems petty being that we are alive and thriving, but hate them and feel very self conscious. Think I may try the nail varnish on one, anything worth a try.
have you talked to your consultant about coming off treatment if your levels are low enough. I know they are now saying that intermittent treatment for BTK may be viable for some to reduce the risk of resistance and give you a break from BTK side effects.
MovingForward4423, I once came off my BTK inhibitor (Ibrutinib) because of mouth and throat sores that were never definitively linked to the inhibitor, but thought to be a possible cause. My counts were good, and I was otherwise feeling well after 6+ years of the Ibrutinib. The mouth sores were gone within 2 weeks and I was well for 7 months off the drug. Then my counts dropped - Hgb fell from 15g/dl to 7g/dl and of course, fatigued with modest activity. Eventually went on acalabrutinib 5 years ago, but it took a 4 months to see counts improve significantly. I need RBC transfusions for a few months while waiting for a response to the acalabrutinib. I'm not sure why my response was so slow to the second BTK inhibitor, but I am loathe to go off it now that my response is good and counts are stable, even if the warts might improve.
No resistance found on multiple testing and I continue to respond to Acal. Feeling well other than warts. But the new drugs in trial do look good, especially the one (can't remember the number - no name yet) that may work regardless of BTK, gatekeeper, and PLCg mutations/alterations.
I have suffered with dreadful warts all over my hands for 10 years. It started with one on a finger that was frozen three times but kept recurring. I tried every over-the-counter remedy but they continued to get worse. I went to a dermatologist and eventually had them all cut off, but they recurred in about six months so I paid to have them all removed again but they came back! I hated my hands and sold all my rings. Then a friend told me he had read about HP Warts from Natural Healing Oils and even though it is expensive, I decided to give it a try. It has taken six months (and 4 bottles)of applying it with a cotton bud twice a day but they have all gone! I can hardly believe it add only wish I had tried it before.
That's how I feel about my hands. Natural Healing Oils (NHO)...Did you need to cover the warts once you applied the NHO to keep it on the warts? Or just apply and use your hands/fingers normally? Thanks for sharing this!
Just apply it and it dries really quickly. You don’t need to cover it at all and I never experienced any pain, unlike most of the other products I had used!
"There have been several studies which have shown that a simple supplement of zinc can improve and clear warts. Zinc supplements (usually tablets) can be bought over the counter at most pharmacies. They have been shown to be safe and effective, in particular in people who have not previously responded to treatment."
Treatment: You can buy zinc supplements over the counter. We will tell you which dose needs to be taken.
Zinc supplement tablets, 15mg zinc
Adults and children One to two tablets daily
Effervescent zinc tablets (which dissolve in water), 15mg zinc
Adults and children more than 30kg (around 5 stone)
Daily dose 15-45mg e.g. 1 tablet, 1-3 times daily
Other options include jelly chews with zinc (2 chews contain approximately 5mg of zinc, but
check the packet) which may be suitable for smaller children.
Children less than 30kg (around 5 stone)
Daily dose 5-30mg e.g. 2 chews, up to 3 times a day.
Acknowledgment: The Trust would like to thank Oxford University Hospitals NHS Foundation Trust for allowing us toreproduce part of their leaflet on Oral zinc for warts.
Note: "Zinc is considered to be relatively nontoxic, particularly if taken orally. However, manifestations of overt toxicity symptoms (nausea, vomiting, epigastric pain, lethargy, and fatigue) will occur with extremely high zinc intakes."
Zinc toxicity - PubMed National Institutes of Health (NIH) (.gov) pubmed.ncbi.nlm.nih.gov › ...
Hi, I recently had my first skin check and explained that I have this re-occurring wart on my middle finger. I went on about how my past doctor gave it two treatments and it still came back.
He took one look and said that is because it is not a wart it's a [?something?] . He told me it has to be treated as a wart and if doesn't heal it is the other thing. I too went through all the permutations.
So I've settled on periodically taking my dremel tool and sanding it almost flush. He did not feel that was a danger as long as I used a clean disc and cleaned the finger after, adding moisturizer and bandaging it.
I do not suggest anyone do this. Dremel tools are not toys and placed in the wrong place, not operated properly, or sudden loss of control can lead to serious permanent damage.
The point is you may not have a wart after all, doctors can misdiagnose until they get the correct diagnoses.
Thanks, Spark_Plug. I have more than 30 warts on my hands, feet and elbows, and biopsy (pathologic analysis) has shown them to be common HPV warts. But I do something similar to what you do with the Dremel tools to at least keep them less cosmetically obvious and bothersome. I use coarse emory board/files to remove as much of the surface callous that develops and increases the size of these lesions. The abrasion process provides more contact for anything applied to the surface of each lesion. The problem is that these warts extend deep below the surface and the virus persists. Superficial, surface control is just that: I can flatten them out, but they eventually increase in size again. Many people likely have the virus in skin locations, but their immune systems keep it at bay. I view currently available treatments as control measures, but not eradication ones. But some control is better than no control!
I did have those as a teen, not fun to have all these extra "fingers" not a real attractor. At that time they used a gel media they then froze with a nitrogen wand. And the treatment was a success.
The one hanging just outside my nostril was the most painful, in so many ways. One day my boss tried to tell me, "hey, uh, wipe your nose you've got something hanging".
My quick explanation did nothing to help, when I said, "No, it's not... (he did not give me the chance to finish "...what you're thinking". ) - He walked away in disgust. You may have to read the exchange out loud a few times before you realize the misunderstanding. I needed to re-tell my room mate a few times before they could stop laughing and explain it to me.
Hence, my first trip to the doctor for true wart removal.
I had similar issues with warts and verucas on hands and feet. Mine started prior to treatment but worsens following FCR treatment in 2018. I tried various strengths of salicylic acid without sucess.
Upon referal to a dermatologist I had them frozen but ended up with huge painful blisters which had to be treated at a burns unit. Once healed the warts returned.
A different dermatologist prescribed Aciterin which can be used for of-label for persistent warts. I was unable to proceed with this treatment due to high cholesterol which makes it unsuitable, the listed side effects also make this treatment concerning. I was then offered surgery on a limited number of warts but was advised that there was a likelihood that they would return.
Following much searching I found a reference to a Spirulina supplement being effective in wart treatment. Over time taking Spirulina tablets daily my warts went away. I continued taking the supplement for another year without the warts recurring, until I was advised to stop upon commencement of treatment with Acalabrutinib, Although there was no clear guidance my Haematologist was concerned about interaction. Since I stopped taking Spirulina I get the occasional wart but find Bazuka Extra Strength gel an effective treatment.
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All good things must come to an end
6 months post FCR and let me introduce Brewster to you all!
Calling all CLLrs in Ireland
COVID TEST - NO ANTIBODIES AT ALL?
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