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IMM101 Use

User
Posted 15 Feb 2019 at 17:49

I read an article this week featuring Prof D of the Institute for Cancer Vaccines and Immunotherapy.   He has been trialling the use of IMM 101 for melanoma with great success since 2006.  I took interest because the article mentioned that Avastin had been trialled for melanoma, having been promising for breast and bowel cancer.  It wasn't successful but I recalled an "off-label" use of this drug for a central venous occlusion I had a few years back. Three injections of the stuff into my left eyeball gave me back 90% of my sight in that eye.  So, though not actually approved for that use, it was known to be safe and could therefore be used.

Now, I am undergoing immunotherapy for bladder cancer, which will with luck also deal with my PCa, for which use it is not yet approved by NICE.  Now both these cancers, like bowel cancer and breast cancer and melanoma are "solid cancers" and it is becoming clear that immunotheray treatments for one may be beneficial for all of them.  Yet the approval mechanism through NICE is incredibly long-winded, largely because these drugs are pretty expensive.

IMM 101 on the other hand is not, as it is actually stuff originally developed for treating TB.  It is based on heat killed bugs  and is simply injected into the skin, once a month, to stimulate the immune system.

Can anyone suggest why an inexpensive safe drug should not be used "off label" without further ado?  Prof D thinks it could perhaps be used as standard with a checkpoint inhibitor like Keytruda, which is alas expensive to give an immunotherapy double whammy.  I shall talk to my oncologist about IMM 101 next week, but he is a cautious fellow and I don't have great hopes of a Eureka moment with him, but maybe more adventurous oncologists elsewhere could take a leap of faith?

Food For Thought?

 

AC

 

User
Posted 15 Feb 2019 at 23:46

Hi AC,

Yes it is food for thought and interesting.  I'll admit there is too much for me to take in but at first sight my thought is Dr D has invested a lot into IMM101 and could perhaps be clutching at straws.  It seems dis-spiriting to still be trialling after 13yrs. Sometimes people are said to have found a great solution looking for a problem.

As to why a safe drug can't be used off label my initial thought is can it have an adverse effect on PCa.  Silly though this may seem I've been very reluctant to use things the GP has prescribed because I'm not sure if it's been tested with PCa.  By the way I'm hoping I no longer have PCa.

I've used a strong cream called Efudix, which is a chemtherapy drug, quite a lot and sometimes suspect it could have encouraged PCa as it gets into your system and flushes out. That might be nonsense but I've recently been prescribed a new tube after a few years without and thought I wouldn't ask because it's a good cream for sun damage.

It's interesting that you hope treatment for bladder cancer will also fix the PCa.  To learn more of your treatment and how it's progressing will be good. It's given me some more things to read up on.  All the best, Peter

User
Posted 16 Feb 2019 at 00:27
You are allowed to name doctors when referring to or quoting research papers / media reports 😅
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Feb 2019 at 09:58

A PubMed search find loads of Phase II studies using IMM-101 - mostly in pancreatic cancer - but I cannot find any published research showing 'great success' in any cancers. Most studies seem to say that IMM-101 is as safe and well tolerated as other drugs ... but that really isn't enough.

I don't think a researcher touting his own [?unpublished] research is a good basis for therapy. NICE does take a long time: but there's fairly good reasons for that.

User
Posted 16 Feb 2019 at 11:33
Avastin was developed to treat ovarian cancers, but someone somewhere thought it might be useful as an injection into the eyeball for age-related wet macular degeneration. It works as well at about £40 a pop, compared with its peer, Lucentis, at around £700 an injection.

How did anyone conceive of that leap of faith?

Cheers, John.

User
Posted 19 Feb 2019 at 15:57
Just to close off this thread, I raised the trial of IMM101 with the young Registrar who was deputising for my consultant yesterday but like Manuel, he knew nothing. If I get anything out of my regular guy when I next see him I'll include it in my new thread on Keytruda.

AC

User
Posted 19 Feb 2019 at 16:14
How is it, sometimes, we know more about this disease than medics?

Perhaps because we have a vested interest?

Cheers, John.

User
Posted 19 Feb 2019 at 20:12

Yes, NICE is long winded and we know that cost/benefit is taken into account. But I feel it may also be that where new drugs are marketed or they are used for other than originally intended purposes, before affects have been fully evaluated over a period of time, there can be widespread catastrophic results. Many of us will remember or have read about the drug originally introduced in Germany as Contergran to assist sleeping. It was subsequently and disastrously given to pregnant women as an anti nausea treatment for morning sickness. It was marketed under several names but became known as Thalidomide . It resulted in thousands of birth abnormalities and was subsequently withdraw for most applications, although it is still used on a small scale today for certain cancers and leprosy symptoms. The case, probably more than any other showed the need for careful consideration and appraisal of new drugs or for different use before being approved for widespread use.

Edited by member 20 Feb 2019 at 02:05  | Reason: Not specified

Barry
User
Posted 20 Feb 2019 at 16:08

Similarly with Stilbestroll once responsible for terrible birth defects then used against Pca (very successfully for 3 years in my husband's case), we must be careful.

 
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