All -
I hope this finds you well. Dad is hanging in there. Not doing great, but not significantly declined so we're happy.
I came across a Facebook post with MRIS showing a sizable tumor shrink. She says they follow the ketogenic diet and a number of supplements, as well as clomipramine. I searched here and don't see anything except one post mentioning not to take clomipramine while on boswelia, but that's it.
Does anyone here take it or have thoughts on its use for GBM? I'm very unfamiliar with it.
Thanks as always.
Annie
Annie,
ReplyDeleteClomipramine (also known as chlorimipramine) is a "tricyclic" antidepressant, an older class of antidepressants in more common use prior to the advent of selective serotonin reuptake inhibitors (SSRIs) such as Prozac (fluoxetine) and Zoloft (sertraline).
It was investigated several years ago, most notably by Geoff Pilkington at the University of Portsmouth in the UK, as a possible treatment for glioma, but these studies were in vitro. Pilkington tried to get a proper trial going for clomipramine and glioma, but did not have much success. You can read the reasons for that in the news article below.
http://www.bbc.com/news/health-29440314
In the article, Pilkington states: "A lot of patients I know have survived for very long periods of time on that drug [clomipramine], but there's not a shred of evidence from a controlled clinical trial," he says.
Annie I saw the saw post I'm luckley enough that she is a member of our uk group.
ReplyDeleteShe put up pictures of two MRI scans a few months apart and in the latest scan it shows the Tumor disappearing.
I also read a paper about combining clomipramine with a certain type of blood thinners improves response.
The profferers states that the lack of evidence is due to "there is no money in selling old drugs"
The only problem is you need to have at least a dose of 200 mg in order to start to see any effect. Prof Pilkington is very responsive and does respond back if you email him.
ReplyDeleteDear Noha,
DeleteI saw your post re clomipramine and Prof Pilkington. My husband has a GBM which has now recurred after surgery and radio/chemo and I''m trying to find anything I can to help him. Pls can you let me have his email - we actually live quite near Portsmouth.
He has an email listed publicly on this web page:
Deletehttp://www.port.ac.uk/school-of-pharmacy-and-biomedical-sciences/staff/prof-geoff-pilkington.html
Thank you so much for your input. Has anyone tried this or had success with it? Dad is currently taking prozac as part of his cocktail. I'm hesitant to toss in another antidepressant, or another anything really, without compelling reason. The facebook post showed two pictures but not sure if the result was attributed to the clomipramine or a combination of things.
ReplyDeleteThe interactions checker at drugs.com also considers there to be a potential for major adverse interaction between fluoxetine and tricyclic antidepressants such as clomipramine.
DeleteI showed those two pictures to a Neuro oncologist who commented that only one image is not enough for him to draw any conclusions as to whether the tumor is shrinking or not especially that while the tumor bed is collapsing, there is increased thickness of enhancing borders so he can't tell whether tumor cell volume is increasing or not. Don't get me wrong.. It might be working but we can't tell from the images shared on the Facebook page whether it really is or not. Best of luck.
ReplyDeleteI've spoken to a couple of people in my uk glioblastoma group who have been in touch with the dr from Portsmouth, he actually sent them over his research to them who in turn sent it to me I would be happy to foward it to anyone who wanted it?
ReplyDeleteHaving contacted Professor Geoff Pilkington my wife has decided to give Clomipramine a go. We would see this as an alternative to DCA and hope it will be more tolerable for her.
ReplyDeleteStarting at 25mg/day she is now up to 125mg/day after several weeks. The target dose is 200mg/day. Extreme fatigue seems to be the biggest side effect and lasts around 2-3 hours per day mainly in the morning.
https://soundcloud.com/user-959768434/episode-5-reboot-part-1
ReplyDeleteThis is a link to a recent interview with Geoff Pilkington mainly about clomipramine. Nothing new in it. The interview starts at 18:30 into the podcast.
For other's info, the soundcloud link doesn't work anymore, but there's a link from this page:
Deletehttps://theconversation.com/profiles/geoff-pilkington-299568/articles
jo jo, I don't have the mental capacity to do the extensive research that many people do on here but I do believe in trying things to stay alive for my children. My dx is oligodenroglioma 2/3. I'm not up for a debate with anyone but I would like to share one of the main things that helps with my energy levels. I take ldn 2mg upon waking and 2mg midday. Inevitably if I forget to take it I am in bed and can't move so I know it works for me. The only side effects I have read about are nightmares and inability to sleep well which is why I take it at the times that I do. I have mine compounded in NYC and my integrative dr prescribes it. Having the ability to physically keep up with my children is the gift that LDN has given me. $75/mth WWW.ldn.org Prayers for you
ReplyDeleteHello Michelle,
DeleteI new to this site. I am 41 diogonosed last October with GBM. I live in NYC; have 3 small kids too. I don't currently have an integrative med doctor. Can you recommend one please?
Philip
Phildefonte@gmail.com
My wife has now been taking Clomipramine since July. Fatigue continues to be an issue although that could be partly due to very low haemoglobin. We have removed Celebrex from the cocktail to see if the haemoglobin levels increase. The latest 6 monthly scan shows an improvement on the previous one.
ReplyDeleteLatest Cocktail:
Clomipramine 200mg/day
Prazosin 15mg/day
Metformin 1000mg/day
Chloroquinne 250mg/day
Minocycline 200mg/day
Longvida Circumin 6 Capsules/day
PSK 9 capsules/day
pterostilbene 4 capsules/day
Milk thistle 2 capsules/day
Brocolli Sprouts 2 capsules/day
Cannabis oil at bedtime. For a period of 3 months.
Melatonin 10mg/day
We hope to add Celebrex 400mg/day in a couple of months if haemoglobin levels increase.
This could be due to the way clomipramine and other TCA's are metabolized by the liver's cytrochrome P450 enzymes (2D6 and 2C19). Doing a PGT test can determine this. Some of the other meds here can also cause fatigue such as melatonin. Also consider that if the hemoglobin is dropping it could be a signal that the cancer stem cells are also dropping. It is very important to be under the regular care of a doctor while taking these medications. We have instead been using imipramine at 25 mg then 50 mg a night and may take to 100 mg.
DeleteIt's now 23 months since my wife's GBM diagnosis. The latest MRI shows improvement from previous one. Cocktail is little changed apart from Celebrex back in at 200mg/day.
ReplyDelete29 months on from my wife's Diagnosis and the MRI continues to be stable.
ReplyDeleteacetyl L-carnitine has been added to the cocktail and has noticeably improved energy levels.
Prazosin has been reduced to 10mg from 15mg.
Molecular pathology was IDH1/2 - No Mutation, MGMT Unmethylated
Latest Cocktail:
Clomipramine 200mg/day
Celebrex 400mg/day
Prazosin 10mg/day
Metformin 1000mg/day
Chloroquinne 250mg/day
Minocycline 200mg/day
Longvida Circumin 6 Capsules/day
PSK 9 capsules/day
pterostilbene 4 capsules/day
Milk thistle 2 capsules/day
Brocolli Sprouts 2 capsules/day
Melatonin 20mg/day
Acetyl L-carnitine 1000mg/day
It is now 3 years since my wife was diagnosed with GBM, without progression. The MRI remains stable.
ReplyDeleteChloroquinne was removed from the cocktail in February.
There has been a noticeable change in her skin colour and fatigue is not a major issue.
Hi there,
DeleteFirstly I would like to say thanks for sharing the cocktail and providing updates about your wife. It's reassuring to hear that her stable condition is achievable and I am happy for you both!
My father was diagnosed of GBM about 2 months ago. I would like to add clomipramine to my father's cocktail after I came across Dr Pilkington's work as well. I emailed him but he did not recommend that my father to take clomipramine now due to my father's circumstances (69yo, almost 4 weeks into radio/chemotherapy). Would you mind to share your wife's profile - just so i have an idea of what Dr Pilkington would consider to be a good candidate for clomipramine.
Also, does your wife show any lethargy from taking the clomipramine?
Many thanks
Elsa
Hi Elsa,
DeleteMy wife is now 54. She has never had any seizures and does not have any other medical conditions.
Fatigue continues to be an issue, but it is tolerable.
My mother sadly has GBM and we are considering whether to try clomipramine.
ReplyDeleteWe have tried it previously, but this attempt was thwarted by the oncologist who insisted we stop!
Unfortunately during the month she was on it (at a low dose - the highest dose reached was 75mg), there was tumour progression, but presumably this was for unrelated reasons.
I have had some correspondance with Professor Pilkington myself. Here are some of his answers to my questions:
Q: Is the clomipramine likely to have any effect on the tumour (good or bad) at lower doses than 200mg?
A: No, the 200mg dose should be reached.
Q: You mentioned the existence of a test to determine a glioblastoma tumour's sensitivity to clomipramine. Does this mean that some variants of glioblastoma will not respond to the drug?
A: We are developing a mitiochondrial DNA mutation test since it appears that patients who carry a specific mutation in their mitochondrial (not nuclear) DNA may respond better to clomipramine. This test has to be done on fresh biopsy tissue.
Q: If the drug is effective, can we expect the tumour to shrink?
A: It has been reported that tumour mass has been reduced following treatment with clomipramine.
Q: Does the drug reach all areas of the brain at the required concentrations?
A: No, studies have been carried out in lab animals which show that different concentrations of the drug and its metabolic product reach the different regions of the brain in different quantities.
So my mum's tumour location is described as 'R temporo-parietal' - given the above, I'm not sure if the drug will reach it in sufficient quantities.
Thanks for posting this Q and A with Professor Pilkington. It's particularly interesting that response to clomipramine may be associated with a specific mutation in mitochondrial DNA.
DeleteMy wife's tumour is in the same area on the left side.
DeleteHi Jo Jo,
DeleteHopefully it will reach both sides of that area of the brain in the required concentrations then.
Glad your wife is still doing well - looks as if your cocktail might be working.
Are you based in the UK? I'm having great difficulty in sourcing many of the supplements people are using from within the UK, especially PSK and cannabis oil - any help greatly appreciated.
I ordered one kilo of PSK from Oriveda, enough for a year. There's a post on the blog about it. Send them an email about buying in bulk and they'll return a price. orders@oriveda.com
DeleteThanks Jo Jo. I contacted Oriveda today and they stated that they do no sell PSK, but do sell "PSP aka Turkey Tail". So is that what I need?
DeleteI've been reading through various posts about mushroom extracts and find it all very confusing.
Assuming you're in the UK, where do you get your 'off-label' prescription meds from, if you don't mind my asking?
Apologies about the PSK. We're using PSP, I'm not sure if it's similar or not. We initially ordered 'Coriolus PSK/PSP Polysaccharide' from amazon, but I see it's not listed anymore.
ReplyDeleteGP prescribed Clomipramine and the other meds were ordered from alldaychemist.
We're in the UK.
This article describes the differences between PSP and PSK
Deletehttps://oriveda.wordpress.com/coriolus-versicolor-turkey-tail-the-facts/
It's almost 3½ years since my wifes' GBM diagnosis and the tumour remains stable. There has been a slight improvement when compared to previous MRIs.
ReplyDeleteThe cocktail remains unchanged.