CLL Support Association
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THE GOOD THE BAD AND THE UGLY

THE GOOD THE BAD AND THE UGLY

Hi everyone. I have some recent results I wanted to share with you regarding the clinical trial I'm on with IB and Venetoclax.

The good news is my numbers look good almost in normal range. If you were going by numbers alone you would say that the treatment is working wonderfully and I should be feeling really good about it..... BUT.. I have had little side effects up until now. The bad news is I recently went to my Dermatologist to have some red spots on my skin looked at and I was told I have Psoriasis. I also have Basal cell Carcinoma. Yes...skin cancer. I will have to have surgery done to remove the cancer. I'm wondering if anything else will happen now while I'm on the treatment. Im not sure if the treatment caused this or maybe my CLL just sped up the inevitable. I did spend many days out in the sun growing up in California and Florida. Unfortunately I won't be as lucky as some on the clinical trial like my CLL buddy Hoffy and others. But I will keep fighting the good fight and I will not let these things bring me down. Not everyone will experience what I have but i just thought i would share my story with you. I just had a CT Scan and BMB done so I'm waiting on those results. It would be nice to get some good news. 😁

BC

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Skin Cancer is more common with CLL. I know someone on Imbruvica who has gotten a bunch of skin cancer lately as well,

I need to check myself sometime,

Glad you numbers are good though!

Hoffy

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Thanks..can't complain about my numbers. I see my Dermatologist once a year. I'm glad I checked.

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You might want to see your dermatologist every six months instead of once a year. When my dermatologist found out I had CLL, she automatically changed it to twice a year. Don’t know about private insurance, but Medicare pays for two a year for us CLL’ers. Hang in there.

BeckyL

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I was thinking about doing that. I have pretty good insurance but I will need to check and see if I'm covered.

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I also have dermatology checks semi-annually at MDA. I have a long history of pre-cancerous skin issues. Interestingly, MDA did a photo mapping of my whole body at my first dermatology appt. It's amusing to see the comparisons on the computer screen, in my choice of underwear that day, to my live visit. It's a great way to keep track of any changes, especially since I am on my 3rd dermatologist there.

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I'm interested in the photo mapping. I will have to ask my doctor at MD about it.

Thank you

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Mine did too Becky.

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Hi,

I am on the same trial as BCTexas and experience the same exact thing: some red spots all over my skin. I don't know yet if this is Basal cell Carcinoma but I have an appointment next week with a dermatologist to find out. These red spots started as I started the trial one month ago.

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Has your oncologist ruled out possible petechiae?

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It could be Psoriasis.

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i developed a rash near the beginning of this trial. It turned out to be a reaction to allopurinol. was switched to a different drug and it cleared up.

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Which drug did you switch to?

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They switched me to Urolic. And I have had no issues since.

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Urolic

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I had to be taken off allopurinol too. It gave me a really bad rash.

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I’m in IB X 16 months. I too have basal elk ca on a spot near the top of my head, lasered X 2 in dermatologist’s office, checked every 6 months. My oncologist says typical of CLL patients. For the time I’m being given to lead a normal life on IB I am grateful and will work with side effects. Best wishes to you.

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Good to hear you are doing well.

Cheers!

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BC, was petechiae ruled out for the red spots?

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Yes..I asked

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Happy for your numbers, not so much for the carcinoma 😕 A good lesson for us all to check our skin on a regular basis. I hope that this is just a small blip on an otherwise excellent outcome.

Best,

Fell

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Thank you. 😁

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Yes Fell I see the dermatologist twice a year and was told to come back more often if something suspicious shows up.

Paula

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I just wanted to add that I am so impressed with Ibrutinib. I had a few side effects the first week; mostly diarrhea and fatigue but my nodes almost disappeared within 3 days. You would go to bed with nodes and they would be gone the next day. The side effects disappeared after the first week and suddenly on week 3 I started to feel my lost energy back. It's probably hard to regain your energy if you are 80 years old but I am only 55 and it was a shocking event for everyone around me. I am a NEW me.

Just like with BCTexas, my blood numbers went all back to normal after 1 month to the exception of my WBC; it is lower at 3.8 than the minimal range that starts at 4. I was diagnosed with SLL and my WBC was at 25 when I started the trial. That sure explains why I regained my energy back. Dr Choi from UCSD Moore Cancer Center in San Diego explained to me that my blood B cells were tied to the micro environment of my nodes. Ibrutinib goes strongly after the nodes, thus destroying the B cells in my blood too.

I don't regret joining this trial I call the RESET button. Worst case scenario I might relapse but my CLL will rebound from MRD negativity and it will buy me another 5-8 years before I need new treatment again. CAR-T or other new treatments might be fully operational by then. I am watching closely Brian Kopfman's CAR-T experience on CLLsociety.org

My last comment is not to Watch & Wait. I would have started when first diagnosed 5 years ago if the trial had been available back then. I would not wait for the disease to progress and create potentially hard to treat clones. W&W made total sense when the damaging chemo was the only option. The lowest the CLL, the easier it should be for that combination of Ibrutinib & Venetoclax to work.

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I agree with you and although I'm experiencing some bumps in the road I don't regret my decision to be apart of this trial. I'm blessed to have the opportunity to be on this trial and i would say to anyone that has the same opportunity to go for it.

Stay strong!

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At my last visit, last week, we discussed the future and my consultant was very happy with the possibility of a cure coming from IB/Veneto. HE believed that the new thinking is treat first no W & W and with the new targetted drugs. Trials are showing that all those put straight onto IB are still in remission. My results were excellent again and he described my condition as complete remission.

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That's great news!! I hope to be MRD negative soon. 🙏

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My doctor ( he’s young). Feels the same way. He says why wait until you are so sick that the side effects are less easily handled.

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😎👍

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I think you will get good news BC. I saw Dr. Wierda today and all my numbers are within normal range - I'm on the same trial as you are. I'm not in remission yet but he says I will get there. I have had basal cell carcinoma on one shoulder as well as a squamous cell carcinoma removed from the other shoulder shortly before I started treatment. I wondered if the CLL brought those on but like you, I have spent a lot of time when younger in the sun. I told Dr. Wierda that I had developed tennis elbow in my left arm (I've had it in my right arm years ago and finally had surgery on it after years of treatment). It's bothering me quite a bit and he wants me to reduce the dose I'm taking of Ibrutinib thinking that could be contributing to it. But now the issue is the one tablet I'm taking instead of the 3 capsules. They are going to have to figure that out so I can do that. By all means let us know how your BMB and CT results come out. We're all pulling for you!

Paula

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Hi Paula ,

Thanks for the positive vibes. I hope they can figure out how to reduce your dose of IB. Now that they went from 3 pills to 1 I'm not sure how they would do that.

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Me either. They were going to check on it though.

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I called for a refill today. They are now making 140mg tablets for those of us on just one capsule Ibrutinib daily. My prescription shipping Friday will be the 140 mg tablets.

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I'm glad they did that.

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I'm glad to hear that!

Paula

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I have CLL early stage and am on W&W but diagnosed last week with basal cell carcinomas more commonly called rodent ulcers here in the UK. I think maybe not the drugs just the disease as these are slow growing and do not come up overnight. Good luck with everything and glad your nodes are down numbers good

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RODENT ULCERS???

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Cheers to my friends in the UK.

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I see my dermatologist once a year now. I found a spot on my vulva back in 2016. Thought was an Ingrown haïr instead turned out to be VIN in situ caused by the HPV. U CAN CATCH HPV WITHOUT sexual intercourse .. they removed it and i am cured of that but need to get checked every 6 months. Vulvar cancer is rare. It only accounts for about 4 percent of all female reproductive organ cancers. If it's found in its early stages, vulvar cancer is highly curable. Fortunately, most cases are diagnosed in the earlier stages.

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I’m not on the treatment and I had a basal cell carcinoma removed from my calf last August. I thought that it was mosquito bite, but no. All we can do is roll with the punches.

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👍

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Hi,

I am glad your numbers look good and pray 🙏 they continue to look good. My ongologist recommended I see a dermatologist once a year & have a colonoscopy every five years, because with CLL were more at risk. I wish you luck.

Angie

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Thanks Angie.

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I have CLL SLL combo diagnosed in 2016. Even before this I always saw a dermatologist once a year to check me out head to toe because, in part, I was raised at high altitude in central Africa at a time when wearing hats was not in vogue, except maybe in the Bush. Since my CLL diagnosis I have noticed that my dermatologist has to freeze off more pre cancerous blots. It could be a coincidence but I doubt it.

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I think CLL brings it out.

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Best of luck, hopefully good news with the other tests. I’m having a bmb and ct scan next Tuesday.

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Good luck with your tests next week.

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My husband was in a clinical trial in Philly in Jan 2016 (CarT)and we noticed a growth on his temple that turned out to be skin cancer. Before the trial he was on Imbruvica and went back on it in March 2016 when it was determined the trial didnt work for him. He had the cancer removed and has had Photo Dynamic Therapy 3 different times (about every 6 months) along with some places froze off his scale. He goes to the dermatologist every 6 months. He also has the red spots that look like a rash....

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I have the same red spots. I'm thinking about seeing my Dermatologist every 6 months now instead of every 12 months since they found something.

Best Wishes from Texas.

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It's such a shame that this wonder drug, IB, which is bringing such awesome results isn't started earlier instead of WW, and I guess I understand the reasons for that. But the fall out for other nastier things to happen like b-cell carcinoma makes you wonder if earlier starts shouldn''t be considered.

I'm sorry you're having to deal with that side of it, BCT, but happy to know you're feeling better overall. Praying for yoi to see even happier days/results!

I started IB 7 days ago. My cervical nodes deflated like a popped balloon the first day! And apart from occasional nausea, heartburn, and feelings of anxiety, I feel great!

I've noticed though, some petechiae on my chest, so I will have my GP send out a Derm referral for a checkup.

All my hopes for brighter days!

Bri

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Thanks Bri...Good luck on IB.

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Yikes...never heard of all these side effects till recently. I live in FL. Out on my boat, beach 4 times a week.... outdoors all the time since I am retired. On w&w but all that changes after 24th. Going to get my final recommendation second opinion for which treatment. I see dermatologist once a year but have monthly acne facials so I am in that office often. Will go twice a year for body scans after hearing this if I end up on ibrutinib. I am lucky to have super high energy even after 11 years on w&w. Thanx for your post!

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Be careful in that Florida sun. I spent 15 years in the Ft. Lauderdale sun. I miss the beaches.

BC

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Just to relate an anecdotal experience, I treated mine (2x about 3cm across)with sodium ascorbate compounded in a cream topically applied. They gradually went away over a three to four week period! I try to catch them when they first come up and arrest their development. I really was averse to having then cut off and decided to try this first. If o can find the info on this I will edit.

jaad.org/article/S0190-9622...

This was not the original study, I'm sure there are others as well.

I drink a lot of coffee for health benefits and recently found this research that caffeine helps to lessen the risk of some skin cancers:

cancerres.aacrjournals.org/...

While this next article is not about treating but possibly preventing UV caused skin cancers as a chemoprotecive agent (one application lasts 4 days with a 15% solution):

pdfs.semanticscholar.org/7d...

As I self treated due to no insurance, I'm not sure how much if any of my experience is related to diet, genetic or environmental factors. Health choices are a personal decision and you should study like your life depended on it...Oh,wait a minute.

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I would like to find out more information. The spot that needs to be treated is on my nose. I don't want a big ugly scare from surgery. 😐

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BC, I had skin cancer removed from the side of my face two years ago. It was just a small white dot that I didn't realize was cancer (it had been there for a couple of years). It turned out there was more cancer below the surface and I had to get 25 stitches in my face. But there's absolutely no trace of a scar; no one can ever tell anything was even done. Just be sure to get someone who specializes in these surgeries and you'll be fine. Good luck!

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25 stiches..ouch! Glad you have no scars. That's what I was worried about since it's on my face.

Best Wishes

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Hi BC,

Thank you so much for sharing this difficult news so we can provide you some support. Although this is a huge disappointment and scary, try to focus on the positive and what actions you can take now.

First, basal cell carcinomas are generally the least dangerous of skin cancers. They rarely metastasize (spread) or become life-threatening.

There are a lot of medications for psoriasis, both orally and topical, which may be an option for you. Your trial doctor will be able to work with you on what you can take. Also, just because you have psoriasis now, doesn't mean you'll always have it.

You said, "I'm wondering if anything else will happen now while I'm on the treatment. I'm not sure if the treatment caused this or maybe my CLL just sped up the inevitable. " You'll probably never know the answer to this but it is what will keep you awake at night, robbing you of much needed sleep. I totally get it because I've had the same fears regarding my husband's treatment. It is important to realize there are always risks but not taking a risk is also a big risk in itself.

Please talk to your trial doctor and find out how this can be resolved while you're participating in the trial.

Big hug,

D.

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Thank you for the excellent feed back. The people here are like family. You show you care about others and I really appreciate it.

Big hugs!!

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OOO!!!

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Hope all goes very well for you, BC, and hurrah for your good numbers! Love and prayers for you going forward.

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😁👍

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Congratulations on the excellent number BC! I'm sure it was a shocker to get the news about your skin. Thamk you for sharing your experience which reminded me to make an appointment with my dermatologist. I hope your procedure goes smoothly and you ha e minimal scarring. Wishing you continued success on the trial, and a thamk you from the bottom of my heart for being a trial participant.

Kim

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Thanks Kim!

Best Wishes

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