My fiancé was diagnosed with CLL in early February 2022. He's 36 years old, asmathic but otherwise a very fit guy. Since then he's had partial to paralysis and neurological symptoms. He hasn't been able to have biopsy because his blood counts were very low - basically no hemoglobin, no wbc and no platelets. He's had to have multiple transfusions over the last few months.
The started him on Venetoclax and obinituzumab after giving him prednisone. His paralysis improved for a while and the lesions on his brain shrunk quite a bit over the last couple months.
But now we're back in the hospital as inpatient(I stay on the hospital with him because of how severely he's deteriorated) and awaiting his biopsy as his blood counts have improved.
My question is does anyone here have a similar diagnosis and what was your treatment like?
Also, does venetoclax and obinutuzumab cause infertility? We don't have children and we weren't able to do any sperm preservation before starting his treatment because it had to be started ASAP. We have an appointment with a fertility clinic, but I would like to know if anyone has been advised about fertility by their doctor. Our doctor said they don't think his fertility has been affected but he doesn't know for sure.
I'd appreciate hearing from anyone who's had a similar presentation and what life was like afterwards. Thank you.
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Blue-bird_
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We are all very sorry to hear your story. Unfortunately many of your questions are extremely difficult to answer. CLL is a rare disease see: cancer.net/cancer-types/leu....
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With only 20,000 new diagnoses in the USA this year, and very few under 40 years old, plus CNS involvement there are almost no statistics that might apply to your fiancé's case.
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I hope he is in one of the major research hospitals for CLL and under the care of one of our world class experts cllsociety.org/newly-diagno...
His combination of rare factors would challenge our best and brightest.
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I wish we could help you more, beyond praying for some relief and answers.
I cant advise you medically but I wanted to say how sorry I am that your fiance has cll so young. It sounds as if the drugs are working. It seems as if he has had cll for a while before being diagnosed. The important thing is to get his blood numbers to how they should be and he is being given the best drugs.I presume the cll has caused brain problems and a neurologist is involved.
I hope the biopsy gives the doctors enough information to monitor treatment.
I was diagnosed age 43 but didnt need treatment.
If you lock your post you will get more replies. Press the more button when you post and it will bring up a lock option. Anne uk
CLL with CNS involvement is a rare complication of an orphan disease, so you really do need to find a CLL specialist as Len recommended. CNS involvement is complicated by the blood brain barrier, which blocks most drugs, but venetoclax is not only an extremely effective CLL treatment, it's also small enough to penetrate the blood brain barrier, per these references:
I've actually heard more about ibrutinib being used to treat CNS CLL, but per the above, we don't yet have a gold standard for this.
With respect to your understandable concerns about treatment causing sterility, venetoclax and obinutuzumab are both targeted therapies, highly selective for B cells, so while it would be wise to take steps to avoid conception while your fiancé is undergoing treatment, I'm not aware of any reasons to suspect there's any risk of sterility. Combination venetoclax treatments generally are time limited to one to two years, depending on the protocol, though with CNS, your specialist would, I expect, be focused on setting the treatment time based on measured results, rather than going by general protocol use. I hope that your age/fertility can accommodate a year or two of a delay in your plans for children.
If you haven't already been convinced of the importance of finding a CLL specialist, per the US SEER data for CLL, seer.cancer.gov/statfacts/h... the median age for a CLL diagnosis is 70, with the median commencement of treatment roughly 5 years later, so conceiving children is a rather rare occurrence with a CLL diagnosis, though we do have a few members who have done so successfully. (With only 0.3% of those 20,000 US CLL cases per year occur in those under 34, with another 1.6% occurring in those in the age group of 35 to 44, you can appreciate how rare your fiancé's situation is in both having CNS involvement and wanting to become a parent.) This, plus the general advice not to attempt conception during cancer treatment, means that there is next to no information regarding risks to a child if conception occurs during treatment. CLL specialists keep in touch with each other, so if your current doctor isn't recognised as such and if the CLL specialist you find isn't aware of similar cases to yours, they should be able to find out through their network.
This situation has been especially stressful because all we've been told is no one knows. I don't hold that against anyone, of course. I know my fiancé is one in a billion anyway, just didn't think he'd also have a one in a billion case of cancer!
We're in England and have been transferred to King's College Hospital in London. His case was sent to them and they did admit that they haven't seen this presentation before. But it's a cancer research Hospital, so it's the best place(according to our original consultant) for him to be.
If it's useful information to anyone, he was given Venetoclax and it did seem to get into his brain and his lesions did begin to go away. But after about 6 weeks, he had an MRI and new lesions have started to appear. That's why we're back in the hospital to hopefully confirm whether the lesions are indeed CLL or a didn't type of cancer.
We're just keeping our fingers and toes crossed that he doesn't also have some rare, untreatable cancer in his brain. If it is CLL though, it's a shame that the Venetoclax didn't work.
His lesions cause inflammation in his brain, so before he was taking Venetoclax, he'd lost his fine motor skills, continence, ability to walk, speak, swallow and then it started affecting his breathing. Thankfully steroids and Venetoclax pulled him back from the brink before he needed mechanical assistance with his breathing.
He started to walk and talk and eat again, but now these new lesions have got him paralysed on the left side of his body.
We're hoping to be able to get a sample of his sperm tested and frozen in the next few days. I am 29, so I could wait a couple years to have children, but based on the bit of progress he made recently, it's going to take a few years or more to recover from the brain damage, nerve damage and muscle weakness. Not to mention the emotional trauma. So we're hoping that by freezing his sperm, he can just focus on his recovery without having to worry about my 'biological clock'.
The main goal, of course, is keeping him alive long enough to get him into remission.
I appreciate you all engaging with me. It's been a lonely road so far.
Hi Blue-birdI just wanted to say two things. Firstly I am so sorry for the awful deck your fiancé has been dealt. My heart aches for you both. It is so unfair but advances in this field have been incredible and I just hope upon hope that they will find a solution for you. Secondly, he is in absolutely the right place. King's college is THE place to be with haematological cancers in the UK so that's a real positive and he could not be in better or more experienced hands. I wish you both the very best and my thoughts will be with you. Patrick
Our experience at King's hasn't been great so far and it's only been a few days. Lots of little blips, things being missed and all his investigations being delayed. They've now told me today that I can't sleep in the hospital with him anymore either. So not feeling the most encouraged having him here honestly. I'm just hoping his brain biopsy isn't delayed for too much longer and we'll be able to get a diagnosis and go back to our local hospital for treatment.
One thing this experience has taught me is that doctors are just people.
You two are dealing with so much now. As doctors seem to treat a patient, one day at a time, I suggest that could be a less complicated and more calming way for you. We have plans for our future, but must focus on gaining our strength for our today. Our future will show up and we will be stronger to live it. That's how I choose to live. I'm 73, in W&W and am determined not to anymore be anxious of my days. My tomorrows are better for it. 🙂 Sandra
I had an excellent experience after the standard treatment of Obinotuzimab infusions one year after a severe bout of ITP (1 platelet count), but not from a previous course of Rituxan. I also weened off the prednisone more slowly after the Obinotuzimab than I did after the Rituxan. It took about 6 months. And that took a toll but, apart from cataracts which are only now developing, the treatment was successful. Have you tried to uncover the underlying issues that resulted in your husband's CLL diagnosis and rapid acceleration of the disease? My story in brief, hoping it might be valuable to you: I was diagnosed with CLL in 2015 and was on watch and wait for about 4 years with almost no progression of disease. After several infections and the severe bout of ITP in 2019 I decided I would go all in on my healing journey. Some of the things which I incorporated or re-affirmed: Yoga, meditation, hypnosis, support from spiritual communities, energy healing, removal of mercury fillings, spending time in nature, improving quality of sleep, etc and doing anything and everything to reduce stress.
Stress is something that I believe triggered my cll. Over the years if my numbers changed it was usually circumstances that were difficult to control. My teenage kids causing worry and my Mum deteriorating. My family are grown up now and my Mum is in a carehome.My Dad had cll so I was always likely to have it.
I lead a relaxed life and my cll is in remission. I think stress and worry has to come out and in some it causes cancer, Anne uk
Are you able to get yourself to Dana Farber, Mayo or MD Anderson? I feel for you, I was diagnosed at 57 ten years ago and an immediate Stage IV. Been in constant treatment at Dana Farber and without question, they have saved my life three times. I am so sorry you are going through this, but after 22 months on Venetoclax I have to tell you that there is hope where 2 years ago there was almost none. I feel I have a runway ahead of me now whereas I felt like I was on a down escalator. I’d love to help you get to Dana Farber but not knowing where you are, its difficult. Please feel free to reach out directly or to me at Facebook Messenger. PLEASE DO!
hello Blue-bird, I saw your reply to JerrysGirl and decided to look at your profile. I also have CNS involvement and I am taking Venetoclax and Zanubrutinib. I have vision loss in one eye. So, when I read this part of your reply above:
"If it's useful information to anyone, he was given Venetoclax and it did seem to get into his brain and his lesions did begin to go away. But after about 6 weeks, he had an MRI and new lesions have started to appear. That's why we're back in the hospital to hopefully confirm whether the lesions are indeed CLL or a didn't type of cancer."
it really got my attention. Did it turn out to be a different cancer? How is he doing now? I hope all is as good as it can be.
I have vision loss in one eye and I am afraid of going blind completely. Next MRI is in October.
thanks and all my best to both of you from the other side of the pond....
I think the lesions started to reduce due to the steroids and stayed that way temporarily after he started the V+O. He was given steroids in February but developed weakness in new areas by May. It was b cell cns lymphoma when biopsied in May, rather than CLL Richter's transformation as they initially suspected. But he also has CLL in his bone marrow, none in his CNS oddly enough.
His weakness completely resolved once the lesions went away after treatment. He started chemo in June and was cancer free by August if I remember correctly, so the treatment can help quite quickly provided that your cancer responds to whatever you are given.
Have you had a brain biopsy or lumbar puncture to confirm that it is CLL in your CNS, rather than an infection or secondary cancer? Many of his symptoms did resolve after he started steroids, but they tend to delay steroids until all the tests are completed, because they may not get a useful sample otherwise.
If the blindness is caused by inflammation in your CNS, it could be reversed after the treatment starts working. My husband never had vision loss, but he did have weakness down his entire left side, incontinence, loss of speech and ability to swallow, which have all mostly resolved. He has to do physio to regain strength but he can move everything again.
I had vision loss (Jan. '24), saw an ophthamologist, got referred to neuro-ophthalmologist, (first appointment in Feb. cancelled due to her illness) when I did see her, she took blood and ordered MRI's (April '24) called same day and said to go to Emergency, had MRI's, got admitted to hospital, had IV prednisone while in hospital, lumbar puncture confirmed CLL in CNS. 8 days in hospital.
I had six more lumbar punctures, with chemo (some inpatient, some after release from hospital.)
As I left the hospital I started Zanabrutinib.
I was on Zanubrutinib for several weeks, then added Venetoclax (with IV fluids for first two days of first two weeks of ramp up period to forestall possible tumor lysis syndrome.)
I have had three MRI's, the first in ER in April, then two more....apparently the IT (intrathecal) chemo did not work.
All three MRI's show that the CLL (found in CSF, cerebral spinal fluid) cells are in the optic nerve of the left eye.
It is visible on either side of the intracanalicular segment of the optic nerve.
If you look at a diagram of the optic nerve with labels it is easier to understand. The optic nerve passes through the bone of the skull....picture a train going through a tunnel....you see the engine on one side and the caboose on the other but you can't see the train cars inside the tunnel....that is what shows up.....sorry if TMI or too much detail....I am writing this down as an exercise as much for myself as for others to understand what is showing up.
I also have "thickening" of the skull...calvarium and base of skull and signals in vertebrae as well.
So, as someone noted in reply to your post, there is not a lot of literature because there are not a lot of people who have this. (although autopsies show that it is more than diagnosed while people are living....)
I was told I have CLL/SLL with CNS involvement.
Sorry if this is too long. I am very happy to hear that your husband can move everything again. I appreciate your reply and your information. What an amazing world that we live in that we can communicate like this......thank you.
oh, I was also given oral prednison for a while ....but eventually tapered off of it....and none now.
This amount of detail is exactly right :). My husband was inpatient for about 10 months and I stayed in the hospital with him, so I'm aware of how much goes on and you can't help but track everything because the staff seem so nonchalant while your life is hanging in the balance. I'm certainly grateful to have found this forum to discuss the many concerns with people who also have an interest in the outcomes.
Have you noticed any change in your condition? I see you're only a couple months into Venetoclax. My husband's biopsy showed CLL in Feb 22 and was clear by August 22. He only took Venetoclax from February until he started chemo in June, so it worked quite quickly for him. His chemo was methotrexate, cytarabine, rituximab and thiotepa, which also got his lymphoma to remission by August 22. Hopefully they will be able to tell you relatively soon if the current treatment is effective.
I was told the venetoclax wasn't effective for his CNS lesions because it wasn't CLL in the end. It's been a couple years since he's had Venetoclax and still no CLL in his bone marrow, even though he didn't complete the full 24 months. They are expecting his CLL to return, because it is chronic, at which point he will start Venetoclax again. But so far so good. He went on to have a stem cell transplant because his lymphoma was aggressive and all his scans have been clear since, too. It was a long road of treatment, with the hospital leaving us wondering many times, but he achieved remission eventually. Venetoclax seems to be effective, so hopefully it will address your CNS issues as well.
re: change in my condition question: I never knew I was sick....the only presenting symptom was the vision loss. I guess I would have to say that I think most of what I have been feeling has been side effects of the medications. I am struggling with diarrhea from the Venetoclax. The vision loss is keeping me from driving and grocery shopping. I did have one episode of very noticeable shortness of breath at the beginning of January shortly before the vision loss but had just climbed several flights of stairs outside in the cold and leaned onto a tree. I don't want to seem ungrateful for the opportunity to take this targeted therapy orally, but since eating was one of my favorite things, the gastrointestinal issues are making me less than happy. I try to remind myself that there are others much worse off for so many reasons (people living in war zones, dying of famine, etc.) but I am not always able to keep the big picture in mind. If I were true to my religious upbringing, I would "offer it up" as the nuns used to say.
Take care and thanks for your kindness and interest and your information.
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Very worried about Mom
Reaction to Venetoclax?
Aggressive CLL - Richter's Transformation 
CNS involvement with CLL
