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Vicki,

Just to clear any confusion.....

These numbers come from the very first article that I quoted from about

quinidine, this is the same article that was subsequently posted (abstract)

on crew by Barbara F and more recently by Lori.

it is called " Enhanced Proliferation and Potassium Conductance of Schwann

Cells isolated from Nf2 Schwannomas Can Be Reduced by Quinidine.

if you click on related articles(which you should always do) your doctor

will see other articles by same group. Also other papers.

If you click on related articles of Lori's recent posts, you'll get even

more info.

This article says that in vitro , they were achieving at least 50 and up to

80% tumor arrest. That's from memory from the graphs, am I right Marcus?

Interesting what he says about immune system, I would like to know more

about that.

rosemary

on 6/2/01 5:37 PM, vjpcook@... at vjpcook@... wrote:

> Rosemary, Greg and others,

> Your posts re: quinidine are very interesting and I have copied and given to

> Anne's oncologist whom we saw today. He was able to get only 1 article off

> the computer medline that was related to schwanomas. He is interested in

> administering it in combo with Thalidomide. He is concerned about side

> effects because it does effect the immune system and heart rhythm.

> Could you be more specific on the article that mentions its 80% efficacy for

> schwanomas? I would like to refer him to this. He is wanting to help. He

> said to me today that the reason doctors don't jump on this is because they

> may see only 2-4 patients in their whole career with NF1 or 2. But he is

> challenged (and an older man at that which surprised me that he is so

> interested) and definitely pursuing it. Anne is just increased to 150 mg. of

> Thalidomide and so far any outward tumors have not changed either way. She

> needs to get to 200mg. for a couple months. We just hope and pray that her

> leg holds up long enough to give this a complete try.

> Barbara F., your post re: Thalidomide and its use with certain cancers was

> very appreciated by Anne's oncologist. I had it from Nov. 2000. He has a

> patient with multiple myeloma who has been on Thalidomide and seems to be

> having some good results which your post further substantiated. Thanks from

> him to you.

> You know somehow, I believe we have medicinal help in the offing. WE all

> deserve it. Hugs to all, Vicki (in sweltering CA.

>

>

>

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  • 31 years later...

Hi Crew,

I had an intersting conversation with Dr. Short this afternoon on the use of quinidine as a theraputic treatment for NF2 tumors. I thought this was very interesting so I bounced a few questions off her to get an idea of what researches are thinking about this drug. Perhaps you'll find this interesting:

Hello Dr. Short,

would you happen to know more regarding the article below on studies done using quinidine to interfere with schwannoma tumor growth?Greg

Very interesting given that in the adverse effects cited about the use of quinidine, which is a drug used for cardiac arrythmias..is the syndrome of cinchonism, which is the symptom complex associated with toxicity (overdoseage) , includes tinnitus, reversible high frequency hearing loss, and deafness. So as impressive as the in vitro data.....I don't think that it is going to be a viable option of therapy for patients with NF2 who are trying to salvage their hearing....Irony

Yes, but Dr. Short, if you've already lost your hearing, balance, and have problems with tinnitus, would this drug be of beneficial use to the user who say, has an aggressive case of NF2? Do you know if this drug has even been approved? Does "in vitro" refer to lab studies alone?

Greg

You know I was thinking more about the adverse side effects...and it is probably its effect on normal schwann cells that cause the effect...so it would mean that there would be a narrow window of efficacy in someone with hearing. However as you say in your case...that wouldn't be an issue...though perhaps it might have effects on other cranial nerves...though you may or may not know that the VIII nerve is interesting in that it is covered by central myelin (made by oligodendrocytes) and then as it exits the brain by peripheral myelin producing schwann cells...so maybe it wouldn't be as big an issue for other cranial nerves.

P

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Rosemary, Greg and others,

Your posts re: quinidine are very interesting and I have copied and given to

Anne's oncologist whom we saw today. He was able to get only 1 article off

the computer medline that was related to schwanomas. He is interested in

administering it in combo with Thalidomide. He is concerned about side

effects because it does effect the immune system and heart rhythm.

Could you be more specific on the article that mentions its 80% efficacy for

schwanomas? I would like to refer him to this. He is wanting to help. He

said to me today that the reason doctors don't jump on this is because they

may see only 2-4 patients in their whole career with NF1 or 2. But he is

challenged (and an older man at that which surprised me that he is so

interested) and definitely pursuing it. Anne is just increased to 150 mg. of

Thalidomide and so far any outward tumors have not changed either way. She

needs to get to 200mg. for a couple months. We just hope and pray that her

leg holds up long enough to give this a complete try.

Barbara F., your post re: Thalidomide and its use with certain cancers was

very appreciated by Anne's oncologist. I had it from Nov. 2000. He has a

patient with multiple myeloma who has been on Thalidomide and seems to be

having some good results which your post further substantiated. Thanks from

him to you.

You know somehow, I believe we have medicinal help in the offing. WE all

deserve it. Hugs to all, Vicki (in sweltering CA.

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