CLL TREATMENT

[Dsingh]

Has anyone used Disulfarm Effervescent for CLL ?

[AussieNeil Partner Administrator]

Never heard of using this drug, which is used to discourage the drinking of alcohol, in connection with CLL. I can't even find any hits on an internet search of the two. Do you have the drug name correct?

Neil

[Dsingh in reply to AussieNeil]

It is one drug and named correct.

Our GP prescribed it .

Fingers crossed

[AussieNeil Partner Administrator in reply to Dsingh]

Given your wife was informed she wouldn't need treatment for her CLL for 20 to 30 years and I can't see any side effects that would explain its off label use for CLL, I wonder what your wife's GP was trying to achieve? Did her GP explain what improvement was likely?

[Dsingh in reply to AussieNeil]

Trying to get lymphosites and WBC low .

[AussieNeil Partner Administrator in reply to Dsingh]

Doesn't sound very promising. From 1975: ncbi.nlm.nih.gov/pubmed/115...

"We found no significant increase in aberrations in vitro or in vivo with disulfiram and conclude taht if it is an inducer of aberrations in lymphoctes then they must be induced with a very low frequency indeed".

[Dsingh in reply to AussieNeil]

Hi neil

I am worried and trying to get her to remission.

Trying everything to curb the problem.

[AussieNeil Partner Administrator in reply to Dsingh]

The reason that watch and wait is used with CLL is because early intervention was not found to extend life expectancy. Any medication comes with a risk. According to this article, there are significant risks with disulfiram:

sciencedirect.com/topics/ch...

I appreciate your concerns for your wife. However, given the current rapid progress with new CLL treatments, we are close to reaching the point where effective medications will mean watch and wait is a thing of the past. We may have reached that point now - we just need time for data proving that to be gathered.

From what you've shared, there appears to be a very good chance that your wife will have access to treatment that will enable her to live out a normal life expectancy when she needs treatment, given it is likely decades away! I3q deleted CLL is the best possible prognostic factor! would hate for her to have her health worsened by unnecessary treatment.

Please ask her specialist for their opinion on this proposed treatment from her GP. You and your wife should be respecting the advice of her CLL specialist, not a GP, who is most unlikely to have experience in CLL treatments.

Neil

[Dsingh]

Hi Neil

Thanks for advise.

Will definitely consult her specialist before taking any medication.

Can you please check on the below link and advise.

Regards

nature.com/articles/nature2...

[Cllcanada Top Poster CURE Hero in reply to Dsingh]

Interesting findings in breast, colon and prostate cancers in the lab, but not a single mention of activity on B cells... which would suggest it would not have much use in CLL/SLL.

~chris 🇨🇦

[AussieNeil Partner Administrator in reply to Cllcanada]

Thank you Chris. Those are exactly my concerns. You would think that they would include at least one blood cancer if the researchers suspected there would be the likelihood of a response. As I quoted above, in earlier research "We found no significant increase in aberrations in vitro or in vivo with disulfiram and conclude taht if it is an inducer of aberrations in lymphoctes then they must be induced with a very low frequency indeed".(My emphasis).

In other words, taking disulfiram exposes the patient to the side effect risk with a very low likelihood of any reduction in lymphocyte count. Furthermore, if there is an effect, it will also accelerate clonal evolution. Given 13q deletion is the best possible deletion, clonal evolution can only result in tougher to treat CLL sub-clones.

Neil