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!
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