This Is MS Multiple Sclerosis Community: Knowledge & Support

At the anti forum I tried I had an interesting thing brought up and Bob this is kind of directed at you.

My lesions are healing. They are definitely healing. I have heard of people getting worse on Tovaxin which we did expect in the trial with some, but with those using Tovaxin is it allowing the lesions to heal?

I know the disability letting up is a good sign but it has nothing to do with what the MRI says as we know.

Maybe Tim could weigh in?

I know for a fact that im getting the real stuff and have seen my MRI's courtesy of my neurologist. They show no disease activity but the all the lesions between 12 - 15 are still there. They dont seem to be healing. My neuro told me that the goal of Tovaxin was to stop the progression of the disease and nothing more. I think ill try HICY if I dont see anything happening with my current lesion load. I want to reverse the damage not keep it at the same level. Ive also heard that the new drug in phase 1 RTL1000 has been shown to reverse the damage of MS but we wont know more until phase I / II have been completed and trial results are posted.

Actually another question I have about HICY is in regards to brain volume. Were you able to recover any or does it simply eliminate any further loss of brain volume?

So Tovaxin does not let the body heal lesions? Wow that makes HiCy even more important. I wonder why?

I know in studies with regular Cyclophosphamide (it may have been HiCy) it helped to stop brain atrophy.

I unfortunately do not know if it had any effect on allowing the brain to regain volume.

I would bet Bob probably has read something on that as well!!

Hey y'all.

It's HOT in Texas, 100 degrees and the power went out at work, phew!

For those who have the good response to HiCy, brain atrophy stops.

I've not read anything about it being regained but would guess it's the same as everything with HiCy, earlier the better.

Including Tovaxin this treatment would be my number 1 option, even if it only buys you 3 or 4 years before the data is out and improved.

I truly believe with the addition of Copaxone, you'll be pleasantly surprised how long it lasts.

Mel continues to do well, in fact she has her blood work done today, last month the hematocrit was below normal, but she's a lot better this month with the anemia, hopefully it'll be low normal.

Her hair (baby fuzz) has started to grow back - hey Chris, she had this weird thing, went to bed with NO hair on body (we both clearly remember her showing a friend her legs saying she'd not shaved since baltimore) and the next day she woke up with literally an INCH of hair all over. Did you get that? Very weird.

She currently does not have any MS symptoms at all, at Christmas she was bed bound.

Long may it continue.

How about you Chris, still doing well?

Great pics btw.

Mel's follow up is next month.

We'll post MRI's too.

Ya I am getting better and better. I was wondering how you all were. You need to update your blog!!

I still hate the heat but physically it always bugged me. I look forward to next summer to see what I am like physically.


Same thing...I was blotchy all over in my hair...specially my face whiskers. Then I shaved my face / head one day and it was all back the next shave darker than before and courser. I am normal now though but I am staying bald till 6 months just in case lol.

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But wait a minute, there is a feature there that is being ignored by everyone:

Revimmune, and also SCT, induce stem cells via the use of neupogen.
Tovaxin does not offer that feature.

In SCT it is done before all the chemo and treatment to rebuild the damaged bone marrow after radiation by being reinstated via an IV.

In the case of Revimmune it is done post neutropenic phase to "restart" the immune system by stimulating the still functional bone marrow, but there is every reason to think that to the extent a stem cell can migrate to and perform some of its healing magic in a brain lesion that will happen.

Now before you go and get all "there's no proof a peripheral stem can get to the brain and heal anything" I offer there is research suggesting exactly that can happen. You can look at the references at cellmedicine.com. Not only that but how do you think (in the case of SCT) the stem cells that were saved up ahead of time get into the marrow to rebuild that when it has been destroyed completely?

This is a well known phenomenon, not some whacko fringey thing. It is done all the time for cancer in that the bone marrow, the seat of immunity, is totally destroyed in order to stop leukemia, then rebuilt with a simple IV of stem cells saved up ahead of time. What reason would be offered for the brain being different? The BBB? but in MS the BBB is open, exactly where the damage is.

The body sends these things where they are needed

This is one of tha main reasons I imagine it could help a person to have a stem cell transplant completely independant of the immune system ablation.

I have often wondered if a person got some neupogen just for the purpose of generating the stem cells, then just let them go where they needed to (don't harvest them and try to increase them in the lab, just let them do their thing where they are) if that would help people.

Shoot there are people going to China and spending 30,000 dollars to get stem cells, neupogen is a lot cheaper than that.
Anyway there is a very unique quality to reviummune that offers regenerative properties in the stem cell phase that does not existin other therapies
marie

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Hi Bob,
Of course, that's my point: revimmune has a regenerative component to it, it stimulates the production of stem cells via the neupogen phase of treatment. The neupogen is given to regenerate the peripheral immune system, but the fact remains it probably does some healing in the brain too.

In the HSCT for MS group treated by Mark Freedman in Ottawa, two years after the stem cell transplant people had sudden unexpected improvements. Dr freedman thinks that is a late benefit of the stem cell treatment that was part of the therapy. Of course these were just standard stem cells taken from the hip grown in the lab and readministered after the chemo and radiation to rebuild the immune system, but the late development of improvment suggests some kind of lengthy process; BTW nerve regrowth (like if you cut a nerve with an accident to your thumb) takes about 2years so it matches up nicely.
see it here http://www.thisisms.com/ftopict-5609.html

I am just pointing out that revimmune because of it's stem cell aspect (even though the numbers are not enhanced in the lab like they are in HSCT) has a regenerative element to it. It's all good

Those of us in the SPMS phase may have to wait a bit until they let us in, but I am thinking it is going to be good maybe. Let's all hope anyway,
marie

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Hey I gotta float this boat somehow

I was gathering evidence while you were writing back here it is:

TO support the idea that hematopoietic stems result in brain regeneration

found here http://www.sciencedaily.com/releases/20 ... 071615.htm


Ehhh???? pretty cool...........