When my husband was 47 he had routine blood work that revealed an elevated lymphocyte count. His father had died of lymphoma the year before and he was just a little tired, so the doctor ran the test again. Still high (5,000s) so he was referred to the hematologist oncologist, mostly due to family history (and she was a great PCP). He seemed surprised to see this 6'2" 220 lb guy, who felt fine, in his office. We were prepared to do a bone marrow biopsy after the FISH and flow cytometry was run, but the results were clear that he had a biclonal CLL with mutated status, and both d13 and tri12 chromosomal abnormalities. He told us he had a good prognosis. That he'd live a full normal life and something other than CLL would make him sick.
Well, during that first year he began to experience flushes of heat and his energy began to wane. He'd had an active full time job, often taking the stairs in the 3 story winery building he maintained. Then coming home and working in the yard. We found his B12 had gotten below normal and corrected that, which helped. But the progression continued.
Every 3 months we'd get labs and tell the oncologist what was happening. They'd see no increase in lymph# and say "maybe you're fighting something". It must be something else. Two years of this, and eventually he could no longer work full time and we still had no answers, no relief. But at each visit we were told "It's not the CLL."
We had to move close to my parents for financial support at that time. New oncologist, same story continued. I'd ask them, do you really think each time we're here he's fighting a virus? They'd say "It's not the CLL".
Well, the next two doctors left practice and we continued the same routine with each new one. His lymph nodes became enlarged 3+ years ago, and we were told they're reactive. "It's not the CLL." He's fatigued daily, with joint and muscle pain, brain fog - hadn't been able to drive for most of late 2019 and early 2020 - but "It's not the CLL." And no other blood work by primary doctors could identify anything else. We decided on Chronic Fatigue Syndrome.
Then this Spring, just as Covid shut down the world, we got a new oncologist. He ran the FISH and flow cytometry again (which I didn't know you should!).
Things had changed. Now he had a complex karyotype: tri12 still present but d13 had been taken over by the dreaded 17p. That with the enlarged lymph nodes all over and his symptoms placed him at Stage 2. (All others had said "stage 0, maybe 1").
So it's felt like getting on a rollercoaster when you were prepared for the merry-go-round. And we've been on the merry-go-round for over 6 years.
He just did 2 months of Calquence, hoping that would work as a monotherapy. But it hasn't done enough to give him quality of life. So he starts Gazyva (obinutuzumab) on Wednesday this coming week (9/9).
I've researched the heck out of it. I'm stressed that I can't be there with him (I'm his brain surrogate when he's "fogged in"). And I've read so many of your experiences here.
We're at a great cancer center. And he's ready for this (tho anxious). And the doctor is the best we've had to date.
But we're both holding our breath. It's been a long road with a lot of dead ends. At 54 years old, he should still have a lot of life in him! We're hoping he starts to get it back.
Thanks so much for "listening". It's good to be able to say all this to someone who doesn't just give you pity.
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VidaPlaya
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Thanks for the detailed posting - but just a reminder that your post is not "locked" / restricted to only our community, so a Google search could display your personal details to anyone on the internet. Please refer to 12c on this pinned post: healthunlocked.com/cllsuppo....
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You can find past postings on Fatigue and Ibrutinb ( I know your husband is on Calquence a slightly different BTK inhibitor- but we don't have as much history with fatigue on Acalabrutinib)
Great to hear that you have found us through an unlocked post and that you have chosen to post unlocked with an anonymous username to likewise help others.
As you will have read, Calquence or Ibrutinib plus Gazyva are good combinations. Just be prepared for a possible strong first infusion reaction. I had one and knowing in advance it was possible took away the fear factor, though I was very thankful my wife was there as it happened suddenly - just after good observations when my nurse stepped out to get some prescribed pain medication. I'm sorry you can't be there with your husband during his infusions. Just encourage him to have the call bell in easy reach and to use it immediately if he feels he needs to do so. All my subsequent infusions were totally boring and significantly helped my bone marrow recovery.
That is exactly why I'm nervous - to not be an extra set of eyes. I've been his side-by-side advocate for all these years. I've told him to speak up if he feels something, even it's the normal things he feels like chills, fever. Any other sign he should watch for you think?
If he feels anything out of the ordinary, he should not hesitate to call for assistance. 'Chemo' nurses know what to do to get things back on track and a quick response makes for easier, less distressing management. My leg muscles just started violently, repeatedly and uncontrollably contracting. It took me a while to settle down after the nurse stopped the infusion, but I had no further problems with the restart. (I was in a private room for febrile neutropenia management at the time. The Gazyva infusions sorted out my neutropenia which I'd been living with for probably around 14 years!
Due to the pandemic, my wife couldn't be there with me for my final infusions, including one on my birthday. However these were done in a chemo ward, with nurses constantly but unobtrusively monitoring infusion patients.
I’m very sorry for what you 2 have been going thru. So bad like a frustrating experience.
But hopefully the Gazyva will help. I had 9 infusions of Gazyva from March finishing on July 31 and, wow what a difference it has made. My labs are normal. The first infusion can be a little bit uncertain. Often people have a slight allergic reaction as I did but they gave me IV Benadryl and it cleared it up immediately. And the IV Benadryl made me sleepy which was great because I got a nice long nap. I found it actually to be a little bit relaxing. The nurses at Ucsd where I receive treatment are wonderful and I’m sure he will have Wonderful nurses as well. Oncology nurses are very special from my experience.
Sending you and your husband positive thoughts and energy.
Thank you soo much, Sally! It's that first treatment I'm worried about. But the I'm glad he's at a new branch of the cancer center with fewer patients so far, so the nurses will be watching him closely I'm sure.
I just wish I had a scissor lift to go up and press my face the the 3rd floor infusion center windows 😅
I did all 9 infusions on my own. No one allowed in due to pandemic. But I made it thru. Maybe because I slept from Benadryl. Lol. Maybe you can FaceTime with him.
Hello VidaPlaya. I don’t know what the expectations were of only two months of Calquence. I am on ibrutinib and it took about two years to get my labs in normal ranges. That said, I don’t see the harm of adding Gazyva. It will definitely lower his wbc faster.
I assume by d13 you mean 13q deleted Cll. I wouldn’t think 17p would replace untreated 13q, so much as it add to it.
It is not typical to have IGHV mutated Cll and 17p, but it can happen. Having mutated IGHV and 17p Cll at the same time is called having discordant markers as 17p Cll is usually seen with unmutated Cll. It is thought that being mutated still carriers a benefit, that is, mutated IGHV Cll with 17p cases on average do better than 17p with unmutated Cll.
And it’s all changed with the new drugs. Calquence works well with 17p Cll, even more so when Calquence is a first treatment.
I hope the Gazyva jump starts him and helps with the fatigue. Your first doctor who said he could live a normal lifespan with Cll might still be right. He could do well on calquence for many years and have other options if it ever stops working.
We'd hoped to see his fatigue improve, as his counts really aren't that bad (he's ranged 5-8k in all 6.5 years since dx). Onco said if was to help, we'd see it within first 4 weeks. And doctor recommended a port to get his infusions (and for the constant blood draws) and that's what really gave my husband pause. The whole things suddenly became frightening and he decided he'd just want to start the oral med first. Then I think he just reached a point where he was done and in a matter of days decided to go ahead with the Gazyva. (Only 1 month after the date he would have started it with the original plan from onco.)
He is not doing the port, and that took some fear factor out. But that the 17p developed is his driving decider. And yes, mutated. I've definitely read that's a positive addition to have with 17p. But what's odd is that he had an abnormality in 13 - I don't have that original report from 2013, only notes so I may have wrote letter wrong. But no more abnormality with 13, only 12, 18 and 19. Onco said populations can change over time.
If I'd known that those labs should be re-done over time, I would have pushed for it. But then again, I'm comfortable with this doctor and so I'm glad it's him treating him at this point. Also a better cancer center than the one we started out at.
I would definitely recommend getting a CLL specialist on your team. If only for a review after a few months of treatment. It’s really useful to have a second opinion and to have a Connection with someone who really knows what they are talking about. For a start the brushing off the fatigue thing whilst very common by non experts doesn’t usually happen with the real experts. A while back I interviewed prof hillmen (clIck on my name to find the old posts) and he said that fatigue is the most common symotm of CLL at all stages.
I’m 49 so understand the extra stress of fatigue robbing you of your career. I can’t work either.
Hopefully the treatment will help loads.
If you can’t get a CLL specialist from your insurance and if you live in the USA then the CLL society offer a free web based second opinion service and that could be very useful to get a clearer picture and answer more of your questions.
This is why we're on our 4th oncologist (5th if I count a temp doctor we were assigned to for one visit). As I mentioned he's the only one that did new labs and listened. He's kept up on research. Trust me, I've managed my own chronic illness for over 20 years so I don't sit back passively. Every patient needs an advocate, especially when they're too fatigued to think. I pushed to get him in to an excellent cancer center.
But he’s stil an oncologist. Which by definition makes him a generalist. They can be very helpful and interested and listen and be great doctors to work with day to day supervising treatment. But by definition they can’t be able to understand CLL as well as someone who’s running clinical trials, writing for the literature, and seeing many CLL patients.
I wouldn’t suggest you m fire this guy as he sounds like he has done well to retest, etc. But perhaps just arrange to also see someone to help you understand the best course of action in the future and to discuss how aggressively to treat at the moment. So for example if in a few months things have headed in the right direction but not as much as you hope the CLL specialist would have an opinion about whether and when to consider trying venetoclax additionally as well as being able to explain things much more completely than any oncologist can.
I go to the largest blood cancer centre in Europe headed by a published expert but I still got a second opinion both before starting treatment and at the end of my first treatment period. Just great to have another pair of top expert eyes look at your case. Especially when young and especially if you have an unusual or aggressive mix of markers.
Thanks for those thoughts. I'll definitely keep it in mind. This doctor has definitely treated CLL before, but we're in a small town - no other patient at center is even on Calquence.
And then there's the underlying ME/CFS he also has had for years - it's really hard to distinguish between the two.
But if we don't start to see some liveable changes with this course, I'll definitely have to start looking for some other input.
Little update - he's had several good days since Friday, even spent a few hours gardening and we slogged ourselves out to the park to enjoy the sunshine yesterday and he's not overly fatigued! That's a first in months!! So maybe this protocol is starting to work, just need Gazyva to kick out the remaining pesky cancer.
The CLL society free remote second opinion service may be just the thing for you. They might for example think that the fatigue might all be CLL as even MBL (CLL precursor) can cause fatigue. How long has he been fatigued for?
I explained a bit in my horrendously long post but he's been fatigued since first year since diagnosis, so around 2014. He did find he was B12 depleted, but that was corrected. The fatigue just got worse and worse, along with joint and muscle pain - by end of 2015 he couldn't work full time, and by end of 2019 could not even do part time either. From October 2019 to early summer 2020 he would often spend 3-4 days in bed recovering from whatever he tried to do for a few hours at a time, like garden work.
I've read the older post thread on this forum "good numbers and severe fatigue" and it was like reading his life story! We've been bouncing back between onco and PCC for years trying to make this address this fatigue that was not part of his life before CLL - he went from the Energizer Bunny to a dead battery in just a couple of years.
That’s my story too. I was Mr energy. But early cll destroyed my life and career. I don’t think you need a chronic fatigue syndrome diagnosis to explain that personally.
The more I read people's experiences here, the more I believe ME/CFS was a dead end. Labs by the infectious disease doctor do show all kinds viral activations, but still, this all started after dx. But you're told for years that "this isn't CLL" causing the fatigue, and you start to wonder. But this current doctor never, ever said "are you depressed?" - just said, "well, you have fatigue and enlarged nodes" (and spleen, but that was same since dx), so he had no qualms in starting treatment. All the others just offered to write a note to our PCP (who, by the way, did say long ago - "you have cancer, that causes pain and fatigue" but we'd still get shut out by the onco at the time.)
Thanks so much for listening and your helpful words!!
His mom likely has some form of it, or at least MBL. As she's in her late 80's though, and can still run circles around us, we've never addressed it. I've seen her WBC, and it's always been slightly elevated. But no health problems! (Seriously, we practically have to hide a baby aspirin in her food when she should have one.)
My husband's weren't elevated before 2013. As I have an autoimmune illness discovered after routine check ups, I've always made sure he got annual blood work. Only 2013 did something pop up as out of the ordinary.
Well we can definitely acquire new mutations over time. I don’t know how, absent treatment, the 13q would disappear, but there is a lot I don’t understand. It doesn’t make much difference, it would be the 17p deletion that drives treatment choice anyway.
A port was suggested to me early on. I didn’t want it because it would just remind me I have leukemia and mess up my golf swing. I had a handful of infusions for my hemolytic anemia but now it’s just a pill a day and blood draws every three months. I am doing fine without port so far.
Calquence and ibrutinib are game changers for 17 p Cll. Most of the older studies with ibrutinib were with people who had been through multiple treatments, so it was a challenging group. Ibrutinb still did a good job, but some did develop resistance.
Resistance is much less likely for those taking calquence as a first treatment. I think I am switching from ibrutinib to calquence soon. They are both miracle drugs to me.
I started with a diagnosis of the 13 in 2012 but had new FISH test in 2019 and was then told TP53 mutated. So yes, markers change so I am now in Imbruvica and all blood work in normal range. Just deal with traveling pains!
The more I read, it seemed only in last few years did they realize that the markers could change - used to be "you're this karyotype" and that was it. So I'm glad that this doctor ran all the tests again!
I've gone 17 years of infusions, including Gazyva, and blood draws without a port and my veins have held up just fine. My advice is to report ANYTHING different during infusions, even an itchy ear. Someone, after having read that advice before his first treatment, thanked me because it was an itchy ear that caused him to report a possible issue to his nurse. You are not being a wimp, or bothering the nurses if you speak up. They would rather react to a false alarm than have a very sick patient! I had no reaction to Gazyva, but I did realize, at some point during my first infusion, that my nurse was watching me like a hawk.
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However these were done in a chemo ward, with nurses constantly but unobtrusively monitoring infusion patients.
but he's been fatigued since first year since diagnosis, so around 2014. He did find he was B12 depleted, but that was corrected. The fatigue just got worse and worse, along with joint and muscle pain - by end of 2015 he couldn't work full time, and by end of 2019 could not even do part time either. From October 2019 to early summer 2020 he would often spend 3-4 days in bed recovering from whatever he tried to do for a few hours at a time, like garden work.
CT thorax results: borderline lymphs
Fatigue, Headaches, Fevers, Numbness Without Obvious Cause? 
New to CLL so confused 
CLL-the unexpected-post splenectomy. 
