Survey: Did your AN shrink after radiation treatment?

[Tumbleweed]

Thanks for the links to info on honokiol, Paul. I haven't had a chance to read up in depth yet, but one thing that caught my eye is that honokiol is anti-angiogenesis. By inhibiting VEGF, it prevents new blood cells from developing in the tumor. Without new blood supply, the tumor can't grow or eliminate waste, and it dies.

That's the theory, at least. But I should note that I tried taking large doses of several anti-angiogenesis supplements (Wobenzym -- AKA Flavenzym -- bromelain, curcumin, resveratrol, and more; at least one of these was specifically a VEGF inhibitor) when I was first diagnosed. I took them concurrently prior to getting CK, hoping to avoid treatment, and instead of halting or slowing my tumor's growth, it grew at 5x the average rate over a five-month period.  That's what impelled me to seek CyberKnife treatment.

So I've got to say that I'm dubious. What works for controlling cancerous tumors doesn't necessarily work for controlling ANs, which are benign and very similar to healthy tissue.

Please don't get me wrong: I always appreciate it when someone posts links to new research concerning the control of ANs. But I've done the VEGF-inhibitor routine before and found it entirely ineffective for control of my AN. But maybe honokiol  is different...

Sincerely,
TW

[Tumbleweed]

By inhibiting VEGF, it prevents new blood cells from developing in the tumor.
TW

I meant to say "new blood vessels."

Best,
TW

[PaulW]

I found the link to the paper showing what happens to tumour size after Gamma Knife.
Its an interesting read, and shows a large variation in how the AN reacts


http://www.ajnr.org/content/21/8/1540.full

[producer]

Just a quick add to this interesting thread.  The pubmed paper on Honokiol concludes that it inhibits growth and promotes shrinkage  in schwannoma cells by targeting the ERK pathway.  So its not based on its anti-angiogenesis effect.


chris

[producer]

What would the equivalent dose of Honokiol be for a 75kg human?  On the paper it says dose was 7mg/mL(IC(50). What on earth does that mean?

[PaulW]

I am not a pharmacist nor a doctor.
I believe it means you need 7mg of honokiol per litre of blood plasma, to achieve 50% of the maximum therapeutic dose.
So if it is injected intravenously you will probably need about 14mg. presuming you have about 2 litres of plasma in your blood.
If you swallow it who knows how much actually gets into your blood.
Could be nearly all of it, or nearly none of it. Depends on how your body processes the substance.

There is no hint as to how it should be administered, nor long term affects.
Interupting processes could be bad for AN's and bad for you too..

I am sure injecting Jet Fuel into your blood will probably stop your AN from growing too.

There really is not enough information to safely attempt the use of this substance from the paper provided.


 

[ppearl214]

Folks
Not to be a buster here, but we are beginning to go off-topic (topic being:  Did your AN shrink after radiation treatment?).  Can we please get back on track to the topic?  Suggestion would be to continue this topic in a new thread.  Also, for all newbies on this forum, this current discussion has not been noted by the ANA as a treatment option for AN's and recommends that all those seeking treatment options do so with an experienced AN treating physician/facility/option.

Thanks.
Phyl

[producer]

Noted.  Thank you 

[Tumbleweed]

Thanks, Phyl. While I appreciate all of the posts (the ones about honokiol are especially interesting), this thread is supposed to be a survey. My goal was to present, in very compact form, an overview of regimens that people used to shrink their tumors post-radiation. Compact so that people could quickly peruse the entire thread and recognize any potential commonality among protocols. The thread is definitely getting watered down by off-topic posts (we're on page 3 and only one other person has reported their tumor shrank). So thanks again, Phyl, for reeling it back in.

(I do appreciate everyone who expressed support for my endeavor.)

Best wishes,
TW

[ppearl214]

TW:

Agree.  Thinking the Honokiol discussion can be done in a different thread as that is new research that has just emerged but still warrants further medical research, I agree with you about a compact location for those seeking to find out if there is a commonality for post-radiation shrinkage.  Although we have not determined this to exist (and Dr. Medbery is noting the same on the RS forum as well), this survey does help to present that although it can occur, although not to be expected, it is interesting to see if one's lifestyle choices do/can contribute to the shrinkage of post-radio AN's.  As it stands right now (based on inputs here), not seeing it...... but the survey is definately worth it, so I thank you!

Phyl

Thanks, Phyl. While I appreciate all of the posts (the ones about honokiol are especially interesting), this thread is supposed to be a survey. My goal was to present, in very compact form, an overview of regimens that people used to shrink their tumors post-radiation. Compact so that people could quickly peruse the entire thread and recognize any potential commonality among protocols. The thread is definitely getting watered down by off-topic posts (we're on page 3 and only one other person has reported their tumor shrank). So thanks again, Phyl, for reeling it back in.

(I do appreciate everyone who expressed support for my endeavor.)

Best wishes,
TW

[Tumbleweed]

Like you, Phyl, I'm thinking it's not likely a common cause for shrinkage will be found. But if it can, this is one of the most likely places for it to happen. Where else is there access to thousands of AN patients at once? If a reliable protocol for shrinkage exists, this is one of the most likely places to find out about it.

Of course, the problem is that dramatic shrinkage happens so very rarely that  the few people who have had this happen must see this thread and choose to respond to it in order to get any useful data at all. And the data are likely to be so few as to render a firm conclusion unlikely.

But it's worth a shot. It's much easier than mailing out survey forms to thousands of AN patients (assuming you knew their contact info and they opted in to participate). And any results are immediately accessible here to all interested parties.

So hopefully more people who have had their AN shrink will come forward and participate in this survey. Assuming there are more people and they're on this forum.

Best wishes to all,
TW

[Tumbleweed]

I just did a search in this forum on the word "shrink" and quickly perused the most promising results. I found three other people on this forum who have had their tumors shrink:
JimC -25%
Mark -20%
...and the grand prize winner: KathyG -95%

In Kathy's case, her tumor had been filled with a lot of fluid prior to treatment. When the tumor stopped producing fluid following radiation, it collapsed.

This makes me wonder whether Phyl and I also had tumors that had higher fluid content. It may be that those of us who had the highest percentage shrinkage simply had tumors that initially had more fluid in them compared to the average AN. This relates to the question of vascularity (prominence of blood vessels in the tumor) posed by someone earlier in this thread.

Best wishes,
TW

[ppearl214]

Interesting stats and theory, TW.   I've never inquired specific to my AN re: fluid content as for me (and me alone), just wanted the thing zapped and done... and now, pushing 6 yrs later..... zapped and done.  Now, I know that is not the case for many (as I can only speak to my own experience), I could inquire to my radio-onc re: the fluid content (in his opinion) yet, I've also learned that one that has radiation performed on their AN may never know since we have not had it surgically removed for a biopsy to be performed to definatively define the makeup of our particular AN. We know many, pre surgery, were told they had AN's but once in surgery, were determined to have different growths, so in my case and as it pertains to my post-radio shrinkage, not sure if trying to find out if my AN's fluid content is possible since no biopsy was performed on it to make this determination.

I had coffee... sorry.
Phyl

(P.S.  Just saw Dr. Medbery's updated response on the RS forum.... see below.  He was responding to my comment/question that shrinkage may occur but not expected and known reason:)


Buddy Medbery
#6 Posted :a day ago
Rank: Administration
Groups: Administrators
Joined: 10/28/2011(UTC)
Posts: 47
Location: Oklahoma City, OK


I think that is a fair statement. If you look at the graph, you that a lot of the tumors actually do shrink in volume, and I must say that I have never formally analyzed our results in that regard.

There are a couple of things that make that series a little unusual:
1. THeir control rate was lower than most people get, which may be in part because
2. They treated tumors up to 4 cm in size, which most of us don't do routinely, and
3. doses were as low as 10 Gy, with the lower doses in the larger tumors

SO I think the trends in size are interesting, but I would be reluctant to take much more from this

Clinton A. Medbery III
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
(405) 272-7311
buddy@swrads.org

[frenchjoey]

Hi Guys!
Thanks for this thread and this discussion. I think it's most interesting and will prove very useful once you get more data. I was also thinking of starting a thread collecting statistics regarding symptoms before and after GK or CK for people like me who have had the treatment recently (one month tomorrow). What do you think? Of course we're not doctors but I think our experience can create an enormous data base that might one day help doctors make some kind of unexpected connections between An shrinkage/symptoms and age, alternative medicine, diet, food supplements, the texture of the AN, medical history etc etc. Maybe I can think of some kind of quick and short questionnaire that people could fill in and the, who knows, some interesting statistics may come up...... 
Let me now if you think it would be a waste of time.
Cheers,
Joey
P.S. TW, I asked my homeopathic doctor about taking spirulina and he said that I was taking such small doses of it that it couldn't possibly counteract the positive effects of radiation but that in the long run it was helping my body fight the side effects of the treatment.

[Tumbleweed]

Phyl, I doubt your doctor would be able to discern the past fluid content of your tumor without a biopsy. In KathyG's case, it was probably surmised on a cause-and-effect basis that it had been filled with fluid; that is, the only explanation for such dramatic shrinkage was that it was previously fluid-filled. But I could be wrong, so fire away!

Joey, I remember seeing a survey of pre- and post-treatment symptoms about 6 to 12 months ago in this forum. Responses were all over the map, but the majority of people reported seeing their symptoms/side effects improve within 6 to 14 months after treatment, if I remember correctly. You might want to do a search for that thread to see if it's still active, before starting a duplicate one. If it can't be found anymore, I think it would be a good thread for newly diagnosed and recently treated forumites to read. A helpful guidepost, if you will.

Sincerely,
TW