I thought it was time to share my Mums story so far. This blog has been just so helpful and I am so grateful to Stephen and all who contribute to this so thank you.
I will try to keep this as brief as possible and focus on the important and maybe interesting bits for others going through this.
My Mum, Marilyn, aged 66 was diagnosed in July with GBM. Symptoms were; getting lost on her drive home from work (a drive she has done many many times), text messages were getting muddled, trouble feeling stable when walking down stairs and some speech issues such as forgetting the word for things. The first scan showed a very large tumour in her front left temporal region and a very small one further back on the left side near her speech and communication region. She is being treated in the UK where we are from but I live in San Francisco so I am back and forth a bit (trying to not get fired from my job but be home as much as possible to offer her and my Dad support). My brother is a great support too and lives in the UK.
After diagnosis, she had keyhole surgery on the larger tumour which was a success with 99% resected. We decided to leave the smaller tumour alone as there was a risk of her speech worsening and her symptoms were so relieved after her first op. The plan was to try to hold this smaller one in place with chemo and radiation. As she is being treated by the NHS she didn't get any tumour tissue testing as a standard which absolutely boggles my mind! I had to fight hard for it. The results from the pathologist got back to us insisting there was too much necrotic tissue in her tumour to be able to test for anything.
Mum started on a cocktail during radiation mainly of supplements but towards the end of the 6 weeks had added CBD oil and a few repurposed drugs from the Care Oncology Clinic; Metformin and Mebendazole. Celebrex has been impossible to get hold of for us even with two letters of recommendations from two different oncologists to give to our GP. However I am chasing a few more options now so there is still hope here.
After radiation/chemo her symptoms worsened significantly, in particular her sentence forming and some of her movements. We were told this was just a result of the radiation and to be expected so we were hoping she might start to improve again but in mid November things got so bad she was rushed to hospital. She could not talk and her right side movement was significantly impaired. She was given a high dose of steroids (after not being on any after radiation) as they found she had severe cerebral oedema. This was unfortunately caused by the smaller tumour growing significantly since her first operation. It had grown and a new one was forming next to it and very close to Mums motorneruone center.
Thankfully surgery was an option. She ended up having to wait nearly 5 weeks for the surgery as it was a 'really busy time of year'. It was a very long 5 weeks and Mum got back onto a cocktail during some of this and had been finding the CBD oil particularly helpful. She was not keen on taking THC but is very happy to take the CBD and feels brighter after doing so. The surgery happened on Christmas Eve and went as well as possible. The surgeon was a bit amazed/stumped to find so much necrosis, he said it "was all grey" and he could not see any live tissue. Normally there is some necrosis but he was really stunned to find as much as he did and felt that whatever she has been doing she should keep on doing that! I am not sure what to think here as her original tumour was also full of necrotic tissue so it could just be the nature of this GBM. It was interesting hearing how shocked the surgeon was though and how positive he felt that something was causing it to die.
This time around with the surgery we had asked again for tumour tissue testing but had no luck again due to the necrosis. We also decided to pursue immunotherapy at IOZK in Cologne with Stefaan Van Gool. Mum's tumour was frozen and shipped off to Cologne and they seem to think they can still build a successful vaccine with the tissue so that was some good news.
Mum's NO had wanted her to switch to PCV after she progressed during radiation but we felt it was too soon to give up on Temodar for a whole lot of reasons. With the number of scans she has had in the past few months we are able to see that a tiny bit of growth from her original resected tumour has stayed static indicating something is holding that in place. She started on her first month of the high dose Temodar a few weeks ago. Between days 5-10 of the month she will go to Cologne for her treatment.
The first NDV injection was done on Tuesday. They had her on a drip of Selenium, Vitamin C and Newcastle Disease Virus at the same time as having Hyperthermia treatment. She tolerated it well. She went back the next morning for the same again. So far my Mum and Dad have found the clinic to be really pleasant and they have been well looked after. Mum had a slight fever during the night on Wednesday but is good right now. Attached a picture of Mum undergoing the IOZK treatment...
We are adding and adapting Mums cocktail gradually but this is it below for next week. We have Cimetedine and Sildenafil waiting in the wings and are working on getting Celebrex and Minocycline too. We have not added the COCs other prescribed drugs, Doxycycline and Atorvastatin as there is not enough evidence of efficacy with these. We may consider adding DCA as well -especially as it is accessible although I am concerned about the potential side effects and being so far from home so often it is hard to only hand out the instructions and not be there to manage any potential symptoms.
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First thing in AM Lanzoprazole (x1) 30mg
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Before Breakfast Levetiracetum (x1) 500mg
Wild Alaskan Fish Oil (x1) 1125mg
Selenium (x1) 200mcg
Broccoli Sprout Extract (x2) 1000mg
During/After Dexamathasone (x1) 2mg
Breakfast Metformin (x1) 500mg
Zinc (x1) 50mg
Boswellia (Wokvel) (x1) 333mg
Curcumin (Longvida) (x2) 1000mg
Ashwaganda (x1) 125mg
Coriolus PSK (x2) 1200mg
Honokiol (HonoPure) (x2) 500mg
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Before Lunch/Mid Wild Alaskan Fish Oil (x1) 1125mg
Morning CBD oil 100mg
Pterostilibine (x1) 50mg
During/After Vitamin D3 (x2) 4000IU
Lunch Green Tea Extract (x1) 725mg
Pterostilibine (x2) 100mg
Boswellia (x1) 333mg
Ashwaganda (x1) 125mg
Mebendazole (x2) 200mg
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Before Dinner/Late Flaxseed oil (x1) 300mg
Afternoon Curcumin (x2) 1000mg
During/After Levetiracetum (x1) 500mg
Dinner Metformin (x1) 500mg
Milk Thistle (x3) 450 mg
Coriolus PSK (x2) 1200mg
Vitamin D3 (x1) 2500IU
Chloroquine (x1) 250mg
Honokiol (HonoPure) (x2) 500mg
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Bedtime Melatonin (x1) 10mg
Does anyone know of any reason to not take a very high dose of Vitamin D3 for extended periods?
Whilst supplement shopping today I read the label on the back of one of the Vit D3 5000 IU bottles that said to only take once every other day and to be wary of taking for continued periods. I am not sure what side effects there might be and again I am sure whatever they may be are most likely insignificant compared with the potential benefits in this case.
Has anyone got any good methods for organising supplements? Any recommendations on pill organisers? I noticed Ben Williams uses them in the survivngterminalcancer doco. There are a whole range on Amazon. It makes sense to prepare a weeks worth ahead of time.
I am so grateful for this space to share and discuss. Thanks so much Stephen -I am not sure I can say thank you enough times!
Best wishes to all.
Alison
Edited to add IOZK cost breakdown:
Alison, so sorry to read this. Coincidentally, I just asked my doctor about 4000IU for my wife and he said, "I take 4000IU myself on a daily basis." And he weighs maybe 145 pounds. He said that 4000IU should be fine for my wife, who is a heartbreaking 90 pounds. Of course, this is just one doctor but I thought you should know.
ReplyDeleteQuestion: Where are you getting the Newcastle virus and (if you don't mind, and I totally understand if you do) may I ask how much it costs? We're trying to watch every penny but want to also take advantage of everything that would be of substantial benefit.
Hi Logan,
DeleteGood to hear about the Vit D3, thanks! Mum is taking 6500IU as she takes an extra one in the evening too but as some folks are taking 10000IU a day and are doing OK I am hoping this should be fine. I figure that as she also lives in the UK it is making up for the lack of sun also!
We decided to go with the virotherapy/immunotherapy treatment at the IOZK in Cologne (Koln) after choosing to compare Unifontis and IOZK. The IOZK is where Stefaan Van Gool is based and after reading up about him I felt positive that they were at least very advanced with their treatment. Unfortunately, it is so damn expensive and they gave us an estimated total of 45k Euros for the full treatment. We are working out ways to fund this. I am actually wondering if they offer some kind of payment plan..I will try to find out.
Here is the cost breakdown that was emailed to us.
And I am also going to attach the pdf too. (potentially in a new thread as i can't see where to attach it in a 'reply'!)
Immunologic oncologic diagnostic tests at start 3000
Virotherapy in combination with locoregional radiofrequency hyperthermia (1 day) 800
First vaccination cycle
GMP DC production conform AMG §13 (8 days) 8800
Virotherapy in combination with locoregional radiofrequency hyperthermia (6 days) 4800
Second vaccination cycle
GMP DC production conform AMG §13 (8 days) 8800
Virotherapy in combination with locoregional radiofrequency hyperthermia (6 days) 4800
Immuno-monitoring
Monitoring of specific T cell response in vitro with Elispot 4800
Immuno-monitoring of the immune responsiveness 2000
The virotherapy with NDV must be 800 Euros and include the Hyperthermia. They do this alongside the Temodar and then after Mums 6 month cycle they come in follow up with the vaccines and she has to be at the clinic for 8 days I believe.
I have not visited the clinic as I returned to SF just before Mums first appointment with them. But my parents are pleased with the service so far, however have found some things to be super vague and it can be hard to get answers to some questions. This could be to do with the language barrier perhaps. I wish my German was anywhere near as good as their English!
We never looked into Dr Nesselhut and this may be a better option for just acquiring the NDV and sounds like it is 600 Euros a pop from Stephens response.
I hope that helps! I am happy to share any info if it helps others too.
I really wish you and your wife all the best and hope her symptoms start to lift with time after the radiation.
This is outstanding information - thank you!
DeleteResearching now...
Alison, I would also love to get some info on the Necastle virus and price on that treatment clinic. As for the pill organizers I use weekly ones for my husband. I use a double one for all prescriptions meds and the multivitamin and use a single one for am supplements and pm supplements. That has been working great. I'll try to post a picture here when I'm at home on my computer. Can you tell me what supplements you had your mom on during the radiation? My husband's NO said "no antioxidants" but I'm a little hesitant to stop any supplements. Also, for the CBD, which strength are you using?
ReplyDeleteThank you!
Hi Daninha,
DeleteI replied to Logans question above with some information on the costs at IOZK. I would say it definitely seems worth checking out Dr nesselhut too as they may be cheaper. The IOZK may offer other plans that are solely based on the NDV injections. We were able to get tumour tissue to them and just before Mums first 6 month cycle of temodar so we are able to try the full treatment. Although the costs will be a struggle we are hoping to find a way to do it and really believe it is worth a try. I hope this kind of treatment becomes more widely available soon with the number of trials going on and wish the costs could become somewhat more reasonable.
Thank you for the info on the pill organisers, that makes a lot of sense. My Dad was very glad to hear such things existed. I would love to see a picture of your set up if you get the chance.
Mums cocktail has changed so much (as I have learned more and more) but she was roughly taking the following during radiation,
Curcumin, PSK, Melatonin (only 5mg), Genistein, Green Tea, GLA -Borage Seed Extract, Resveratrol and CBD -Care By Design 18:1 spray. She gradually started adding more like Ashwaganda and Boswellia, Selenium, Omega 3, Vit D3 but this would have been closer to the 6th week of radiation. She also did a small fast and didn't eat after 5-6pm in the evening with her radiation happening the next morning at 9-10am. I am unsure about the antioxidants conflict. Mum's NO was happy with everything except said to avoid Echinacea. What is your husband currently taking? My Mum was also on fairly low doses of all of these supplements to start and increased over time.
For the CBD, we use Aunt Zeldas. We use a jewellery scale and weigh out 100mg onto rice paper. The ratio of the extract changes slightly each time but they give you a breakdown of what they send you. It is normally around 22:1 CBD:THC from the 'ACDC' strain. AZ's have been pretty great to deal with. They also recommend easing onto that kind of dose and increasing eventually to 150mg/day. We just want to keep a continual supply (which has been challenging) so 100mg/day is what my Mum is staying on right now. They say to split the dose and take it twice a day, at least two hours after any medications and eat something fat soluble or protein based 20mins before hand.
Hope that helps.
Alison
DCA
ReplyDeleteMy wife (51 yo) started DCA at the start of December at a rate of 20mg/kilo/day. In total she was on it for 24 out of 30 days, before we stopped. She quickly showed signs of fatigue, loss of balance and weakness in legs. 1 or 2 weeks after stopping peripheral neuropathy developed in her hands and feet, the fatigue and loss of balance quickly disappeared. As of the start of February the feeling is back in her hands, but she still has no feeling in her feet.
In one of the posts Stephen suggests starting at a much smaller dose, I think it was 6mg/kilo/day. We will try it again when the feeling in her feet returns.
We did use acetyl L-carnitine 500mgx3, R alpha lipoic acid 150mgx3 and benfotiamine 80mgx2 from the start and continue to do so, apart from the chemo week.
One of the standard DCA doses used in clinical trials has been 6.25 mg/kg twice daily (12.5 mg/kg per day total). The risk of peripheral neuropathy is much less at this dose according to these clinical trials.
DeleteThank you for the DCA info. I had wondered about what to take alongside it, so that is really useful. I guess we would start on maybe 5mg/kilo/day and go up from there a little.
DeleteTrying to add one thing at a time so we can see if something causes any side effects off the get go.
Thanks so much for the info.
Both IOZK (in Koln Germany) and the Nesselhut clinic (in Duderstadt Germany) offer Newcastle Disease Virus in combination with dendritic cell vaccines. The price of a single NDV treatment is approximately 600 Euros at the Duderstadt clinic, although this is on top of the price of the vaccines. I haven't seen a detailed price breakdown for the treatments at IOZK.
ReplyDeleteDad takes 10,000 IU Vitamin D daily. Coincidentally, I talked with breast cancer survivor who takes the same amount. As for pill organization, I have found that what works best for Dad is if I set dixie cups in the bathroom and write MON - AM, MON - PM, TUES - AM, TUES - PM, and so on. It's faster for me to put them together that way - I fix up about 5 days worth at a time. And it's very easy for me to see what he has taken or missed.
ReplyDeleteAnnie
This is great Annie, thanks for sharing. That makes a lot of sense! My Dad is keen to figure out a better system this week.
DeleteI'm having a hard time figuring out how to add a picture here from my MacBook. I'll keep trying but I might have to start a new post.
ReplyDeleteHi Alison,
ReplyDeleteMy best wishes to you and your mother. I also have a relative with GBM who is taking cocktails from Care Oncology and starting therapy at IOZK. Could I ask: is the plan for your Mum to start vaccine therapy (not
just Newcastle Disease Virus and heat shock therapy) while
she is still taking Temodar? I might have misunderstood
but got the impression this wasn't a great combination,
partly because the Temo suppresses the immune system.
Very happy to share notes.