Saturday 23 July 2016

My husband - introduction

Dear all,

In August 2015, my husband (he is 35) had terrible headaches, his vision was affected,  then left side weakness. So went to emergency and two tumors were found. In frontal lobe 64x41x54mm and in basal ganglias 16x22x15mm. The bigger one was resected and the smaller one was inoperable. 

After month he had radiotherapy with concomitant temozolomide.
After around two weeks after the RT he got hydrocephalus. 
Was given shunt, then got meningitis, shunt was removed. Fortunately, now he does not need shunt.
Whole December in hospital, he was in the intensive care unit with meningitis reaching CRP 300.
He survived.

After that he started taking Valcyte. He is not taking any chemotherapy, because for MGMT unmethylated Temodar would not work much.

His biopsy is:  GBM grade 4, GFAP posit, Olig2 posit, IDH1 negat, IDH2 negat, p53 wild type, Ki67 25%, MGMT unmethylated, EGFR not mutated, KRAS not mutated.

Now briefly:
The smaller tumor got bigger and bigger and was operated 18.7.2016. It turned out to be mainly cyst (doctors surprised), with only really small areas shining (being active). Right now he has 32mg of dexamethasone just after the operation.
The leftovers from bigger tumor - got now very very aggressive, it is diffused, inoperable. And I think there is not much time now left.

My questions:
1. which supplements I can give him here in hospital while on high does dexamethasone?
2. which supplements, drugs would you advise to add to our protocol to which we want to return when he is at home again?

Prescribed drugs:
Valcyte
Keppra

Then he takes (will give precise mgs when at home):
ReishiMax Glp(Nuskin) - 3 times higher recommended dos
Cordymax  (Nuskin) - 3 times higher recommended dose
LifePak (Nuskin) - multivitamin
MarineOmega  (Nuskin) - recommended dose
Curcumin  (LifeExtension) - 3 times a day
Boswellia (300mg) - 3 times a day
Resveratrol 250mg (250mg trans-resveratrol, 100mg Quercetin) - 2 times a day
Melatonin - 5mg before bed (will increase this to 10mg)
Chlorela - 2x a day
Serapeptase -2 capsules early in the morning
Betaglukan
Vitwmin D - 5000 UI once a week
Rick Simpson protocol (should we stop it as we will start with DC vaccines?)
Banerji protocol (Ruta + Calcarea)
Carcinosin 200C
peptides (whole content not revealed) for immune system
peptides with reishi, cordyceps and more (not revealed to us)
Epiquercican (Dr Rath) - 3 capsules a day (lysin, prolin, arginin, EGCG, ..)
probiotics
meditation
avoiding sugar, restricting meat
Can we add milk thistle?
Can we add aloe vera?

We were in Lithuania more than month ago. DC vaccines are ready from my husbands blood (not from his tumor). Day before first DC vaccine he will have tetanus shot to increase the better outcome of DC vaccines.

We also started to cooperate with one scientist at the oncology institute, he now has samples from his tumor. He is expert on mesenchymal stems cells and vaccines and nanoparticles, so we hope to get to some state-of-the-art treatment too.

Any help will be much appreciated. 
Wishing you all lot of strength in fighting this beast.

Hana

16 comments:

  1. I am certain others here have more to contribute but I would suggest two things:

    Vitwmin D - 5000 UI once a week should be daily per https://www.vitamindcouncil.org/blog/why-does-the-vitamin-d-council-recommend-5000-iuday/

    And I would push to reduce the dexa as soon as it is possible. My then-100 pound wife was given 48mg per day and we are convinced it lead to a rapid growth in her tumor based on (a) the depression of her immune system and (b) a rise in her blood glucose levels.

    Where are you located right now?

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  2. Hi Logan,
    thank you for your reply. He will be released from hospital on Wednesday.
    I think am gonna put him back all the supplements for the immune system.
    We are located in Slovakia.

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  3. I agree with Logan, that is a really high dose of steroids. Stephen could better comment on your list, it looks very similar to those I give my husband. I found the hardest thing for my husband was taking the enormous amounts of pills. It seemed to fill him up and he didn't want to eat much. It's a tough balance. The only other thing that you don't have on this list is cannabis oil. Not sure if it's legal in Slovakia. If it is, or you can find a way to get it, my husband has been taking a 1-1 ratio of cbd-thc for over a year and his inoperable tumor has remained stable. Good luck to both of you.

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    Replies
    1. Hi would you mind dropping me a line? I'd love to question you about cbd. thanks so much! jpc14_99@yahoo.com

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  4. I'd agree with the commentary above. Dexamethasone can be essential to control edema (which can be fatal) but at s real cost in longer-term outcomes. See:
    http://www.ncbi.nlm.nih.gov/pubmed/27020328
    Corticosteroids compromise survival in glioblastoma.

    My wife's on a small dose (1-2 mg/d) during radiation, titrated to symptoms (mostly persistent headache). We anticipate she'll be able to stop after radiation. But every case is different.

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  5. If one knew what dose of dexamethasone he needs right now. Post operation MRI said "ischemic edema". They opened big cyst and lot of necrotic tissue is now exposed to immune system and also lot of water was released from the cyst. It is hard to decide what to do as yes, edema can kill too. They now decreased it to 24mg. I hope that on Wednesday his dose will be zero. (Cannabis is illegal here.)

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    Replies
    1. Weaning off steroids should be done gradually. Your husband might need a maintenance level for a while.

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  6. Today they decreased it to 12mg.
    Doctor said that by the end of this week he can reach 0mg.

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  7. article on dex tapering http://www.medscape.com/viewarticle/498465_5

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  8. To inform you: This is how we were given to proceed with Dex withdrawal day by day: 4-4-4, 4-0-4, 4-0-2, 2-0-1, 2-0-0, nothing. So on Sunday he will have 0mg. I will of course supplement him with Boswellia. I plan 2x500mg as I have 500mg capsules.
    Hospital documents revealed he had CRP above 7 so we are concerned as we plan to start DC vaccines next weak. That's all for now with the update.

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    Replies
    1. In my experience that withdrawal plan (sounds similar to the one i was given) is too fast... weening took me months.

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  9. if you'd like to drop me a line for more info: jpc14_99@yahoo.com

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    Replies
    1. Hi OP, by more info, do you mean about dexamethasone?

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    2. I must report (for the sake of others) it turned out some dex was needed

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  10. Yesterday he had MRI. We looked at the CD (not having description from expert yet) but I see and know if has grown. And much. And in two months. Not sure we have another two months. And not sure what to do now.
    2 days ago he started classical DC therapy with metronomic cyclophosphamid and MGN-3. It's immunotherapy which takes some time to see results.
    Do yoy know of SMPF therapy in India? Is it good treatment worth to proceed?

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