Hello! My brother has had CLL for a long time, years. About a year ago, the 'watch and wait' period was over and he needed to begin treatment. First, was chemo, and it wasn't effective. Then they went the Ibrutinib route and it seemed to work like a charm, white count went down, spleen returned to normal size and was feeling okay, with few side effects. Then came the back pain, the horrible back pain. Turns out there are lesions on his spine and the jury is still out as to what it is - PET scan is scheduled to figure it out - another cancer (possibly prostate) or some other infection. Does anyone have any experience with this? is it normal to develop another cancer along with the CLL? I assume it might be. Any positive stories of survival? or, is this a really really bad sign. I just want to know what I need to prepare for.
BEST,
Abe
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AbrahamB
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I'm really sorry that your brother is having these additional problems after seemingly getting his CLL under control and yes secondary cancers are regrettably a real issue for us but at the moment he remains undiagnosed of one so let's hope it's something less sinister.
Obviously, it's impossible to talk of further treatments and survival rates for an undiagnosed problem and I really hope it doesn't become necessary. Sending him and you very best wishes. Please let us know how things go.
We have some more news now. From the biopsy in his spinal lesions, they were able to tell that it came from the lung. BUT, after a every scan imaginable on every part of his body including a full body PET, they couldn't find any tumors, not even in his lung. We are taking that as a good sign that nothing is large enough to show up. And the doc is treating it as lung cancer. BUT, the bad news is he has to stop taking his Imbruvica which has been working wonders. And the roller coaster continues.
In 2011, I had a swollen lymph-node on my neck. I went to an ENT doctor who did an ultrsound of my neck. While he was looking at the swollen lymph-node which turned out to be CLL, he also spotted a mass on my thyroid which turned out to be papillary thyroid cancer. It was not a good day -- but it wasn't the end of the world.
Remember that CLL is a cancer of the immune system, so I am not surprised by the presence of other cancers. I have also had squamous cell carcinoma. As a result I see a dermatologist every six months. I am also careful where I travel. I want to avoid countries with high rates of TB. I think in terms of having a weakened immune system and what I can do not to test it.
CLL patients are at a higher risk of secondary cancers...
In my case I had a Richter's transformation... where CLL turns into a very aggressive form of lymphoma... this as it turns out originated in my spine...
The median survival is about 6-8 months... that was 3 years ago...
Recently, I was diagnosed with colon cancer, which was removed over Christmas... my prognosis is 92% survival at 5 years...
Yesterday.. I met with my hemetologist and my ALC has dropped 22K in the past 6 weeks and sits now around 66K ... 😄
Secondary cancers MUST BE pursued vigourously and surveillance is key...
So as I sit here sipping my morning coffee on a snowy day, I will let you decide if my story is positive...
Thank you CLLcanada. I'd say that's positive. I've heard a lot about Richters transformation and all I hear is nothing but negative. But for you to be given 6-8 months and now to be sipping your coffee 3 years later is amazing. I'm so sorry you have gone through what you have and I wish you the best. Good luck and god bless!
Surveillance and early detection is the key with all cancers...
Many CLL patients attribute everything to CLL...huge mistake, chances are there is more going on, that needs to be pursued...your brother is on the right track...
Hi Chris...I watch and read your posts all the time and you have answered on some of mine. Just went to my Hematology/Oncologist last week and had CT of my neck, chest, and abdomen. Have new nodes I can feel in the back of my neck. Chest node that is being watched seems to not have grown larger. CT did show a lot of adenopathy. My question is; back in the late 90's I had a blood draw that showed my lymphs a little high, yet it wasn't until 2002 that my lymphs and neuts became upside down. I read that with CLL lymphs can show a potential problem as far out as six years before anything becomes obvious. What do you know on this? In 2001 I had a squamous cell removed and after treatment with Efudex the biopsy showed clear edges. Do you know if there any correlation with all of this?
General practitioners don't get too excite about a single high WBC... perfectly normal if you are fighting an infection... but 2 or3 raised WBCs over say a year is a red flag... that's assuming you see a doctor on a regular basis and many people don't ...so CLL could easily be missed for years... it was in my case.
So... unless you are followed fairly closely by a GP these things never get picked up until other symptoms, like enlarged nodes appear etc...fatigue in my case etc.
SCC might be related but there is no way to tell. Unlikely in very early stages.
Chris I am one of your biggest fans and fellow coffee lovers! So glad to hear how well you are doing! I find the beauty of a snowfall transforms the world into a soft and peaceful place. Enjoy friend.
I was dx in 2007 stage 2 w&w. Just had melanoma removed from my leg , got it all. I am very thankful. I went to the doc every year or so to be checked, they got it early. I was told that cll did not cause my melanoma.
Glad to know you are ok. There are a lot of papers linking CLL to melanoma. It is something all of us need to be aware of. Below is a recent meta-analydis of various studies showing the link. The other skin cancer of concern for CLL patients is squamous cell which unfortunately can be more aggressive and metastasize more quickly in CLL patients too.
Melanoma Res. 2015 Dec 1. [Epub ahead of print]
Increased risk of melanoma in patients with chronic lymphocytic leukaemia: systematic review and meta-analysis of cohort studies.
Olsen CM1, Lane SW, Green AC.
An increased risk of melanoma has been variously reported in patients with chronic lymphocytic leukaemia (CLL), analogous with other immunosuppressed populations. To fully assess this association, we performed a systematic review and meta-analysis of available evidence from observational cohort studies. All such longitudinal studies of patients diagnosed with CLL that enabled quantitative assessment of the risk of melanoma compared with the general population were eligible. We identified seven studies from a search of all published literature to July 2014 in Medline, Embase and ISI science citation index databases. Data were pooled using a random-effects model. There was an almost four-fold increase in the risk of melanoma in patients with CLL compared with the general population (pooled standardized incidence ratio 3.88 [95% confidence interval (CI) 2.08-7.22]), although significant heterogeneity was evident among studies (I=96.0%, Phet<0.001). The risk of melanoma was higher for men with CLL (3.41; 95% CI 1.49-7.80) than women (2.61; 95% CI 1.13-6.01). CLL patients are at high risk of developing melanoma and the magnitude of the risk is higher than that found in other immunosuppressed populations. Our findings suggest that patients with CLL, as they are also at a higher risk of developing the more common skin cancers, would benefit from regular skin examinations.
Our CLL B-Lymphocytes inhibit T-Lymphocytes to protect themselves. T-Lymphocytes pay a primary role in identifying and removing damaged cells that can become cancerous, hence our higher risk of skin cancers - up to 8 times the normal risk as well as our greater risk for some other secondary cancers.
So yes, we should try and get enough sunshine to ensure we have a good vitamin D level (or take a vitamin D3 supplement) and avoid over-exposure per the usual sun-safe recommendations.
Very true Neil..but many skin cancers can occur where the sun has never shined... the new recommendations from the Mayo Clinic is to get a dermatologist and have annual body mapping
Yes we should all have our skin checked annually and probably more often if we have a history of skin cancers and/or a particularly low immune system - though CD4/T-lymphocyte testing doesn't seem to be done much, if at all, prior to chemotherapy treatment...
Hi Neil....just above these posts I wrote one under Chris' regarding surveillance and early detection. Would you mind commenting and giving me your input too. Thanks much. Carole
Per above, you certainly need to be more on the lookout for any possible skin cancers (e.g. basal , squamous or melanoma) and have them dealt with promptly after a CLL diagnosis, because we have a poorer prognosis if they become established.
2) CLL being a chronic cancer, is often symptomless in early stages and can indeed be present many years before it is diagnosed. A past membership poll showed that most of us were diagnosed without us being aware that we had the condition - either because it was picked up when we were being treated for another health condition or from investigation of an abnormal blood test result:
After I was diagnosed at stage IV with 55% bone marrow involvement, my doctor looked back through my medical records and found it was likely present 2.5 years before (blood test abnormal) and later my haematologist told me that a lump on my thigh was a swollen lymph node. I'd seen my GP about that around 4 or 5 years before my diagnosis and it was dismissed as a harmless lipoma - a growth of fat cells in a thin, fibrous capsule usually found just below the skin.
Thanks for your timely reply, Neil. Yes; it does answer my questions this time, I have so many to ask. Now to be concerned of is the involvement of four or five nodes in the back of my neck. Always something new with this disease. Again, thanks. Carole
Ask your specialist whether those neck nodes are likely to be a problem. Many of us put up with swollen nodes indefinitely, provided they aren't interfering with something vital. Nodes can seemingly have a mind of their own, waxing and waining...
Hi Neil...I've had the node in my chest that is being watched, but it's just been in the last month that these new ones in the back of my neck have shown up. My HCP says they are small, but sometimes they hurt. They aren't affecting anything I do, and I feel fine, so will 'watch & wait', there's that phrase again. Since coming to this forum I've learned so much that I've not known about this crazy disease.
Is this relationship due to the use of various chemo drugs, which create a high sensitivity to sunlight? Perhaps the new meds (like Imbruvica - and later) may not cause the same sensitivities?
Our increased risk of secondary cancers is thought to be due to the way CLL impacts our immune system, in particular the way that it inhibits T-cells . Current treatments pretty well all further impact our immune system, so until a treatment is found that actually restores our immune system, we will need to be vigilant about secondary cancers.
The Consultant Dermatologist was pretty sure the CLL 'caused' my melanoma by virtue of immune dysregulation which failed to prevent the very innocent looking mole turning cancerous. Simplistic explanation but as a non 'moley' person who doesn't sunbathe or use sunbeds with no family history, it was felt to be a strong contributing factor.
I'm also said to be at much greater risk of recurrence.
I'm Sandra en i'm from the Netherlands. By surfing on the web I read your post about your brother. I know time has passed since your post but I would like to ask you a question.
My father has CLL for over 13 years now. For the last two years he is using Ibrutinib. Thats working very welk for him. Unfortunately they now found out he has a second cancer. He, just like your brother, had horrible backpain. They found metastases in his back with cells of lungcancer. They made a PET-scan and saw that he also had a few tumors in one of his lungs.
I'm doing my utmost now to search for others who, more or less, are having the same sort of cancers (CLL with lungcancer) as my father. I'm so curious how they are doing and what kind of treatment they are having?
This is Apurva from India. I came across your post and read about your father. My Father also has CLL from past 8 years and now he has been diagnosed with Lung cancer past 2 months. He is getting chemo treatment carboplatin + permetrexed. 2 cycles done but his blood counts have dropped drastically. Dr says it CLL which is making his counts go haywire.
I am reallly curious to know what treatment is your father receiving now. Getting advise will really be helpful to me.
Hi Abe... How is your brother? Have they considered CRMO as the bone legion problem... My grandson has been diagnosed with this rare one in a million bone dresses.
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