My husband has MBL - I understand this as stage 0 CLL. He is asymptomatic and well. His iron/ ferritin suddenly dropped and a small bowel malignant tumour was diagnosed and successfully removed.
The Haematologist who manages the CLL commented that it’s unsurprising that he developed a secondary cancer as that is often what CLL patients die from. This has freaked me out.
On this forum, however, there appear to be many who stay well with or without treatment and I haven’t seen that many with additional cancers?
Please share your thoughts on this.
Thanks!
Written by
NixRose
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You touch on an important aspect of CLL , namely the increased risk of secondary cancers.
The main risk is from non-melanoma skin cancers, but some others as well.There is a lot of literature on this topic.
I must tell you that these days I am reading a lot on this topic and finding surprisingly contradictory data .I will not go into details because it will take me 2-3 hours and I do not have such free time at the moment.
Furthermore (as I have mentioned a few times recently) about 1-4% of CLL patients are found to have a second cancer at the time of diagnosis.
The other cancer is not necessarily related to CLL.
The causes are heterogeneous and most of them are certainly not known, but some of them are genome instability(especially for people with mutations in the TP53 gene), age-related weakening of the immune system, change in the microenvironment, changes in a number of other genes, etc.
Your husband is at stage "0" which would suggest relatively weak changes in the factors that determine immunity.
However, it would be interesting if you could share the results of your husband's FISH analysis, and as many blood parameters as possible, as well as give us an indication of your husband's age .Has he had any such "events" before.
The mass in the small intestine of what nature was it (whether it was related to lymphomas or not).
I hope you caught it in its infancy.Tell us more about it.
Thank you Yalokin for taking the time to reply. Much appreciated. I didn’t even know there was a vaccine for Pneumonia. I don’t know the details of my husbands FISH results other than that there Haematologist didn’t not feel there were any of the truely alarming genetic results - my husband is somewhat in denial about it all so not going to ask him.
My husband is 60 and been well up until now- the blood results were incidental although his iron has been low for many years. He had a small bowel neuroendoctine tumour removed. It was caught very early and ironically only because we were monitoring his bloods for the CLL so that is a silver lining. We are going to meet the Specialists for the NET soon but don’t think it’s related to Lymphoma but to be honest I was so distraught I think I missed I lot.
I agree with Yalokin , CLL is considered a cancer of the immune system. Something about CLL interferes with several different functions/aspects of our immunity, but the researchers are still trying to find the root cause.
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We get skin cancer at 5 to 8 times higher frequency than people with normal immunity of similar ages. We are more likely to get Pneumonia (bacterial, viral or fungal) than other people and I believe that is the most frequent cause of death for CLL patients.
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So make certain that your husband gets all his vaccinations up to date, previously 2 Pneumonia vaccines were recommended but now the newest PCV-20 is used alone
, get regular screening (annual or biannual) for skin cancer, get colonoscopies, and see his GP whenever anything strange is happening- don't wait for it to "go away"
We live in Australia so very concerning about the skin cancer. We also love the water but he’s quite good about swim vests etc. I had no idea there was a Pneumonia vaccine - thank you. I will certainly bring this up with him and his doc. Although only Stage 0 his Immunity markers are lower than normal already. We are just living our lives normally at the moment but like everyone on this forum, I guess, I feel like like we are walking around with an unexploded grenade in our hands…
CycleWonder and NixRose, It's very important to get up to date with your non-live vaccinations soon after your diagnosis, as your immune system with CLL typically worsens over time, increasing your risk of infection. This pinned post covers vaccination recommendations:-healthunlocked.com/cllsuppo...
W&W since 2015 with the "good markers" , mutated, 13Q deletion, so on. Just diagnosed with basal cell carcinoma, am scheduled for Mohs surgery. So secondary cancers do happen. The thing is that I have been seen by 3 different dermatologists who did not recognize the cancer. One assured me it was a cyst in 2015. My newest dermatologist said she wasn't buying the cyst diagnosis, took a biopsy and found it was BCC. So I have had it since at least 2015. If you have something odd keep asking about it.
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Horrific CLL specialist visit ! 
Have others heard from the government about being classed as vulnerable because they have CLL? 
Cll diagnosis for my dad
CLL + Bladder cancer + prostate cancer 
Methylation focus on CLL
