I am a 59 yr old female who was diagnosed with low-grade, non-Hodgkin lymphoma / CLL. Initially, I noticed a lump on my neck after getting my first Covid vaccine in Mar 2021. I was diagnosed July 2021 following a core biopsy, CT scan and ENT appointment.
I am currently on Watch and wait but my blood cancer is progressive and I have been advised to start treatment in Jan 2023. My BC had been monitored and my platelets have dropped, my hemoglobin has dropped significantly and my white blood count is high. I have been advised to start immunotherapy treatment soon, a combination of Obinutuzumab and Venetoclax.
I also have had a skin cancer growth develop on my left forearm which has been diagnosed as a low-grade squamous cell carcinoma. Has anyone else had skin cancer developed with CLL?
I am anxious about the side effects and any long-term effects of this treatment. Please if anyone has had this treatment can you let me know what your experience has been? Thank you
Written by
Abbey222
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Hi, welcome. Please note your posted question is open to the entire Internet instead of being restricted to this CLL specific community. So this "unlocked" type of post, that "Anyone" can read, generally gets fewer responses than those shared to "community only". I've included a photo to how, if you edit your post, you can scroll down to the bottom and "lock" it.
You can do a search within HealthUnlocked of this protocol, and the skin cancer, and find quite a number of experiences in mostly locked posts.
How to "lock" or restrict a post to CLL Forum members
Abbey and SofiaDeo, I've included a graphic on our home page healthunlocked.com/cllsupport that links to a post healthunlocked.com/cllsuppo... explaining the pros and cons of posting open to internet searches vs posting just to this community and how to make the selection. Abbey, you can edit your post to make it closed to the community if you wish.
We CLL patients are 5X to 8X more likely to get skin cancer than people with normal immune systems. So regular full body skin exams at least once per year are highly recommended. In the USA we try to find a dermatologist that primarily works with skin cancer, but we hear that in UK the NHS is not as ready to have that done by a specialist.
Hi Abbey and welcome. You've been through a worrying time with all those tests and now your diagnosis but I'm glad you've found time to join our really supportive community.
It's very common for people to have their CLL diagnosed as a result of other investigations or routine blood tests, as you did. If you get a chance, when you learn more from your pre-treatment testing, please add that information to your profile. (By the way, your lymphocyte count is important to track, rather than just your white blood count).
One of the important things you can do before you start treatment is to make sure you are up to date with your vaccinations for a number of conditions.
This is especially important as you will be starting treatment with obinutuzumab which will impact your ability to mount a response to vaccinations for some time afterwards.
You'll find very helpful information in our pinned post about vaccinations. Please make sure you do not have live vaccines - the post explains more about that, too.
"People with CLL have a weakened immune system and so we are more vulnerable to infections . . . More advanced disease and treatments can increase our risk of infection and decrease our response to vaccines so early vaccination, wherever possible, is best. However, even at advanced stages of our disease, we may still get some surprisingly good responses."
We have a number of other pinned posts. You will find them to the right of your screen if you are on a pc or laptop or at the bottom of the screen if you using your phone (scroll down).
Thank you for your warm welcome and I find this website so useful but of course I am still learning how to navigate it. Yes, my haematologist has stressed to me the importance of vaccinations and so I am up to date with all mine including covid, flu and pneumonia. I’m glad you clarified what effect the drug Obinutuzumab can have on the body’s ability to mount a response, it all makes sense. Thank you very much for taking time to respond.
Good to hear your haematologist has encouraged you to be up to date with your vaccinations. All the best for an uneventful and very successful treatment.
I am currently on this treatment and doing well. My infusions have been completed since July and my Venetoclax will end in the beginning of February. You can take a look at my profile (which I need to update a little) to see how my numbers have progressed and what my situation was prior to starting treatment. I am have been back on the 400mg dose of Venetoclax since August. If you have any questions or concerns, feel free to ask.
I was diagnosed with CLL in 2008. I am in my fifth season of Chemo (6 months of FCR, 9 months of BR, nearly a year of Ibrutnib, a year of V&O, and I’ve almost completed a second treatment of a year of V&O). I typically get a 2 year break between treatments and I’ve only been in remission once. But I believe my CLL is rather aggressive.
I have been in the hospital several times because of the chemo and had kidney cancer. Each person responds differently to the different chemo. For me the V&O has been the easiest, basically no side affects after the rampup
I have been working full time through all of this. Still go camping and enjoy life. I don’t worry about what I have no control of. I hope you can work through this and continue to enjoy the good things in life.
I found that medication route very easy to travel (both meds).
Thankfully, my numbers remain healthy and stable.
I would encourage you to consider having a port installed as it makes the O infusions very easy, plus if you need any scans during or after treatment that include dye; the port can be accessed for the dye injection.
Ask your hematologist about the Shingrix vaccination also as you did not include that one in your list.
O/V treatment is a great option and is helping many patients. I have my last O infusion next week and will continue on V until a full year passes. So far, very good!
Have the nurses tried the veins in the area of your forearms when you rest them on your thighs, with your hands facing each other? I had I think the last 6 there.
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