Hi as some of you may know I have been failing ibrutinb for a while now . Although my CT scan is perfect and I have no enlarged nodes or bulky desiese. But my bloods are not great and I have lost weight down from 94 kg to 79 kg this year. The main problem I have had and where this all started was two years ago I had a reaction to my 6th COVID booster which led to all over body rash which both dermatology and now heamatolgy just can't put a answer too . Initially they put it down as vasculitis caused by drug reaction to the jab and I have been on off steroids, antihistamines, antibiotics ever since. It's now just face scalp , chest spots etc, which biopsies have said lymphatic involvement. It's been awful as when I get a outbreak I look like I have pox or something. Went to the today as dermatology wanted pictures taken ready for next weeks MDT meeting and I bumped into my heamatolgist who has been reluctant to change my treatment as I don't seem to meet all the requirements of failing ibrutinb. But to my surprise today He said am I seeing you next week which I am and said would I like to switch treatment? Which surprised me evas although for some time he has hinted when I have my monthly meetings he says let's carry on . I know at MDT my dermatologist has been arguing for some months that in her opinion I need treatment but I have been stuck between two departments arguing it out . Maybe actually seeing me with a facial outbreak today he could see how bad it gets . So looks like I have a decision to make . He says why he didn't want to treat us because I'm a strange case and that my next treatment is veneticlax and rituxmnab 24 months, and he is concerned that it may not still work and clear the skin issues. Although my dermatologist has been saying I need rituxmnab to treat my skin issues. All I know is I have suffered terribly last 24 months with the skin issues and I just want it resolved. Antibiotics and oral steroids do work but only for a short time so the thinking is it's my CLL causing the root problem. As you can tell I'm bewildered feel like I have been caught in a trap for two years. My CLL has never really bothered me before I can handle that but the visual skin problems have really caused me physically and mentally complicated I know but thoughts would be appreciated as I find it strange that my heamatolgist is asking me do I want to change treatment rather then telling me I need too.
Treatment,it's my decision : Hi as some of you... - CLL Support
Treatment,it's my decision
have you posted a question to the CLL Society ask the doctor part of the website? They have great resources and a deep bench of many doctors.
as you already know, your situation is very complicated.
I am still on Ibruvica to, and it helps with my itching. My concern is if you go off and then switch it gives an opportunity for the CLL to maybe grow quickly so I guess when I’m trying to say is maybe you could overlap the two?
sorry about your issues,
I have some small bleeding issues in my face sometimes and it’s socially frustrating so I understand.
There is also another website named groups.io (so?) and for CLL dr. Furman answers questions and he seems to have a very good understanding of complicated immune issues.
I think you’ve checked this before, but I have high IGE and that’s right itching issues for me.
Normal ige is about 200 and I am about 5000
Be well,
Hoffy
be well,
Hoffy
Thanks, I gave asked how about iv infusions etc to boost my immune system to see if this would help .but apparently my levels are good. Basically exhausted with it all researched so much and so many possible conditions and end up going round in cycles . Antibiotics definitely help which is weird basically I'm getting skin eruptions that are recurrent take a long time to heal move around then reappear but now are far more frequent uvb helps as it's not as bad in the summer months I still think it's part CLL part curtanous vasculitis. I mentioned possible folliculitis as it looks so similar and it itchy but they say it isn't. Think that after 7 years on ibrutinb I might as well try another treatment even though I have not totally failed ibrutinb and I think that's why my heamatolgist was reluctant to switch as of course that's my first treatment finished and no guarantee on success with any new treatments.
If you don't have resistance mutations, then cBTKi is something you can come back to.
If you do have resistance mutations then it's time to switch.
I think Skyshark makes a good point. A change may give your body a break and if you can return later, it may be a re-boot of sorts. Hope you get some relief soon.
When you say these infiltrations are "lymphatic" do you mean biopsy shows they consist of lymphocytes? Or is the diagnosis "lymphoid infiltrates"? The 2 are somewhat different. If your organ (skin) is being infiltrated with *lymphocytes* you probably need to treat this uncommon infiltration CLL can do to various organs. Since you are already on a drug for CLL, you likely need to switch.
Even if the skin problems aren't considered "CLL", you may want to consider just switching. I had awful GI and skin problems on ibrutinib, even though bloodwork and lymph nodes were "responding beautifully." But I was miserable.
You can always stop the new treatment. I wonder if part of the problem between the two docs, is the dermatologist knowing rituximab can be used to control certain skin problems, while the hematologist knows rituximab can cause some. Please push your hematologist to at least give it a try! It's awful to try to live with constant severe skin problems IMO.
I think you are right on the battle with my consultants . More the heamatolgist who keeps saying it's strange that although my bloods are now very high the wrong way CT shows no enlarged bulky desiese. My derm has been very vocal in calling for treatment for some time now saying it's very clear in her opinion what the causes are ie CLL involvement in all of the 8 biopsies I have had in the last 18 months.Thanks
Praying for a quick and the best treatment ever for you
Hi cartwheels,
This discussion and my reply today may be useful for your consideration:
healthunlocked.com/cllsuppo...
Len
Thanks very interesting 👍
Hi, I had skin issues on my face that made me look pretty horrid. Thick bumpy eyebrows and ears, huge nose and red rash on my face. Venetoclax and Rituxan cleared it and I have been in remission for 5 years.
That's so very good to hear ,any ideas why like me you had the skin issues
what sort of 6 booster injections?
COVID ones, but can't remember what was the 6 th one
COVID injection was mRNA stuff, with lots of side effects, as we learnt recently.
good luck! You’ve had a rotten time. Some very interesting responses x
I wish I had the knowledge to assist with your dilemma. After I got two Covid boosters I got enlarged lymph nodes leading me to diagnosis of Sll/Cll. After biopsy and pet scan it was changed to CLL. I was prescribed Brukinsa mainly because I’m anemic. Last scan didn’t show enlarged lymph nodes. Since on the med I have dark spots and red blustery looking spots on my body. Dermatology said it’s benign. The spots are horrible and concerning. I have a few on my face and dermatology says it’s aging. I was hoping she’d give me an ointment to put on the spots but she didn’t. I found a urea cream and have been applying that. It seems to reduce appearance of the spots. You’re losing weight which is probably alarming and because of that I tend to think that maybe you need treatment. There’s a lot of target therapy meds available for CLL and they seem to have good results. Perhaps you will approach that subject with your oncologist. Hope someone with more knowledge will give you some input. Best to you.
Thanks actually just had my dermatologist phone me up to tell me she will present my pictures and results of all my biopsies which clearly show CLL involvement to the MDT meeting in November. I informed her that actually my heamatolgist asked me yesterday would I like to start new treatment and he has moved my appointment next week from out patients to the cancer ward at the hospital. She had asked me to send her details of what happens.
She sounds very thorough, which is great.
Good luck with new treatment.
Colette
I'm sorry you have to deal with all the skin issues along with the CLL & doctor challenges. I sympathize.
I'm not qualified to comment on treatment options or what route is best for you. I have recently come to realize that when your case is 'complicated' and reactions or symptoms are 'outside the norm' especially when it involves doctors from different specialties, getting a consensus and having treatment options laid out is more than challenging. They hold off, & delay while using more standard medications and testing, testing & more testing.
It appears in cases like this, doctors have an aversion to saying honestly: We don't know & can't accurately predict outcomes but here's option A or B ... makes me want to bang their heads together!
My view is that QoL matters. I hope the responses others' have provided mean you can decide which option seems best for you & tell the doctors.
Good luck 🤞
Thanks very good words and I totally get what you are saying. I think I will opt for treatment,I really have had enough of looking in the mirror and seeing what I see and it's getting worse and more frequent. Standard treatment has only plastered over a ever gaping wound .
I had terrible skin issues with my CLL until I was treated with acalabrutinib. All clear now.
On "watch and wait", but started to suffer with eczema
Psoriasis post-treatment
Skin cancers/lesions - Example images
CLL and Skin Cancer
Time for treatment decision
