Author Topic: New diagnosis from Sydney Australia  (Read 14595 times)

Tumbleweed

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Re: New diagnosis from Sydney Australia
« Reply #30 on: April 04, 2017, 01:10:43 pm »
BTW, since you are hoping to slow down the growth, look up research of Dr. Konstantina Stankovic from Harvard and Mas. Ear clinic, on Tumeric- curcumin and AN . It is promising, but doses need to be very high to work.

I took high doses of curcumin, along with many other natural anti-inflammatory and anti-angiogenesis supplements, for five months leading up to my CK treatments. None of it worked. In fact, my tumor grew at 5x the normal rate during those five months. Another forum participant who was into natural supplements tried much the same routine and also failed to halt her tumor's growth.

I believe natural supplements are a great adjunct to radiation treatments but do not work when taken alone. There are some things that only Western medicine can heal, and an AN is one of them.

My two cents,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

PaulW

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Re: New diagnosis from Sydney Australia
« Reply #31 on: April 04, 2017, 02:39:50 pm »
I took high doses of curcumin after CK... Did it do anything? I will never know...
What it did do after 2 years was give me diarrhoea. I became intolerant to it and stopped taking it. This is a common problem with curcumin.
Both curcumin and honokiol have shown some promise as a natural substance that may have some benefit.. My two cents worth... The theoretical mechanism for slowing growth in AN's for curcumin, honokiol, and aspirin are the same. Curcumin you need massive doses as very little will cross the blood brain barrier. Honokiol, supply is inconsistent, and the amount of active ingredient is between zero and some.. You never know what you are getting and there are a lot of fakes from China
So mini aspirin gets my vote. Few side effects at low dosages, it's cheap and quality is consistent
Let's not forget that aspirin was first used as a natural medicine from the willow bark.
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

ANSydney

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Re: New diagnosis from Sydney Australia
« Reply #32 on: April 04, 2017, 10:24:00 pm »
TW, I think that the curcumin, etc would need two or more years to start to show their effects.

LisaM takes curcumin,etc and has had tumor shrinkage.

For curcumin, honokiol or aspirin, I would take even lower doses than "recommended". I doubt any of them make a difference, but why not try them. Just take a low dose so you are less likely to get side effects.

So, my philosophy is take lower-end doses and give them a 2 year trial, if you can.

Tumbleweed

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Re: New diagnosis from Sydney Australia
« Reply #33 on: April 05, 2017, 11:09:45 pm »
I believe the most effective natural supplement for shrinking a tumor -- after radiation treatments have started to kill it -- is bromelain. Even traditional Western researchers have found that bromelain shrinks some tumors, and a major cancer center (I can't remember which one now, but it was a medical center of the same notoriety as Johns Hopkins) posted on their website many years ago a reference to research on the tumor-shrinking abilities of bromelain. If I remember correctly (it's been years since I researched it), bromelain digests fibrin, of which tumors are partly composed. I took high doses of bromelain both before (for five months) and after (for a couple years) CK. Before treatments, it failed to halt the rapid growth of my AN. But after CK, my tumor rapidly shrank around 70% in volume (after initially swelling due to the radiation). If you want to try this yourself, just be aware that high doses can cause stomach upset and cramping. I found the side effects to be a tolerable trade-off.

Quercitin, resveratrol, curcumin and other natural anti-angiogenesis supplements didn't seem to have any noticeable benefit to me.

My opinions are all based on empirical observations and subjective experience, so take them with a truckload of salt. My tumor shrinkage could have been coincidental or due to some other factor.

My two cents,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

ANSydney

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Re: New diagnosis from Sydney Australia
« Reply #34 on: August 25, 2017, 05:23:49 pm »
I've just returned from the 12 month follow-up MRI (Diagnosis was in August 2107, first followup was February 2017 and this is the latest). I've got the MRI CD so I'll be able to take measurements later today and report.

Before my February 2017 MRI, I predicted the following "I'm predicting about a 10% chance of growth (>2 mm), 10% chance of shrinkage (<1 mm) and about 80% chance of stable size."

Given that the greatest predictor of future growth is previous growth and I've had no progression of symptoms, I'm going to change my predictions to be slightly better.

So, I'm predicting about 2% chance of large growth (>2 mm), 6% chance of small growth (>1 mm), 80% chance of stable size (less than ±1 mm) and about 12% chance of shrinkage (>1 mm)

ANSydney

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Re: New diagnosis from Sydney Australia
« Reply #35 on: August 25, 2017, 05:24:54 pm »
I'm also going to start a prospective study an those under observation that are taking aspirin. I will include myself in that study.

ANSydney

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Re: New diagnosis from Sydney Australia
« Reply #36 on: August 26, 2017, 02:44:26 am »
Here are my MRI measurements for the three times. All dimensions are AP x ML x CC:
27-Aug-16: 2.35 x 2.32 x 3.13 cm (diagnosis)
25-Feb-17: 2.48 x 2.44 x 3.18 cm
26-Aug-26: 2.48 x 2.53 x 3.19 cm

According to the AAO-HNS 1995 definition, my tumor is 2.50 cm. According to the Tokyo Consensus 2003, my tumor is 3.19 cm.

Today's MRI was done without gadolinium contrast agent. Various T2 weighted MRI scans were good enough to determine size. I'll check these dimensions soon, but for now a 0.00 x 0.90 x 0.01 mm growth in 6 months is good enough for me. I've been on aspirin therapy for almost a year. Looking forward to size stabilization or shrinkage, which may never come.

I try to keep the "environmental" conditions before each MRI the same, however yesterday I was sick with the flu. Being sick meant my hydration level, food intake and sleep were altered. I wonder if these have any effect. Constant environmental conditions check will have to wait until the next MRI in February 2018.

After I vomited and went home yesterday, I went straight to bed. But a pulsing "tooth" pain occurred on and off. I new it was trigeminal nerve irritation. I drank more water and this just made me go to the toiled more often. I realized that I was tending towards hyponatremia. So I go dressed, drove to the supermarket and bought heaps of Gatorade. My pain disappeared and I stop urinating all the time. Hydration at last.

WhiskyJoe

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Re: New diagnosis from Sydney Australia
« Reply #37 on: August 28, 2017, 06:10:35 am »
That amount of growth is de minimus and could be attributed to measuring inaccuracies, so I'd say your tumor is stable.  Congratulations. 

What quanitiy of aspirin are you taking each day?
- 9 x 5 x 7 mm tumor
- diagnosed 9/16
- tinnitus, severe single-sided hearing loss, equilibrium problems, semi-facial spasms
- translab surgery Friedman & Schwartz UCSD 9/18
- 100% of tumor removed

ANSydney

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Re: New diagnosis from Sydney Australia
« Reply #38 on: August 28, 2017, 05:20:05 pm »
Thanks for the congratulations WhiskyJoe. I agree, any size change is negligible.

I'm on 1/4 aspirin a day. That is, I take an Aspro Clear 300 mg and break into four pieces, drop a piece in a glass of water and have it at lunch time after it's dissolved. So my dose is about 75 mg/day, which is close the to the baby aspirin does of 80 mg that others are taking. This dose looks like a good value that's high enough to have an effect, but low enough not to cause potential problems such as stomach bleeding.

I've been thinking more about measurement inaccuracies and can see why the conventional wisdom is that there's about 2 mm of measurement error. There are many things that can affect the measured value, most of which are not how well you can wield a ruler. There's where the MRI slices happen to "cut", the tilt or angle of the head during the MRI, hydration level, time of day and how much sleep you've had the nigh before. There's also so many factors that could affect observed size such as blood pressure and the list goes on.

I can see why some authors only consider growth greater than 2.5 mm as evidence of growth.

ANSydney

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Re: New diagnosis from Sydney Australia
« Reply #39 on: September 09, 2017, 05:07:06 am »
Saw my neurologist to get the radiologist report today. As my measurements indicated, there has been no growth, with "stable appearance and dimensions".

So a year now and no growth. Looks like I'm in the majority with no tumor growth after diagnosis.

Next MRI in 6 months.

v357139

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Re: New diagnosis from Sydney Australia
« Reply #40 on: September 19, 2017, 06:05:02 pm »
BTW, since you are hoping to slow down the growth, look up research of Dr. Konstantina Stankovic from Harvard and Mas. Ear clinic, on Tumeric- curcumin and AN . It is promising, but doses need to be very high to work.

I took high doses of curcumin, along with many other natural anti-inflammatory and anti-angiogenesis supplements, for five months leading up to my CK treatments. None of it worked. In fact, my tumor grew at 5x the normal rate during those five months. Another forum participant who was into natural supplements tried much the same routine and also failed to halt her tumor's growth.

I believe natural supplements are a great adjunct to radiation treatments but do not work when taken alone. There are some things that only Western medicine can heal, and an AN is one of them.

My two cents,
TW


Interesting.  I took curcumin also, and I think I took honokiol.  My tumor grew from 2.7cm to 3.5cm in 9 months.  Is there causality there, who knows?  But they sure did not work.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

ANSydney

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Re: New diagnosis from Sydney Australia
« Reply #41 on: February 26, 2018, 02:06:00 am »
Had my fourth MRI last Saturday. From what I can gather, it is now slightly smaller. All dimensions are AP x ML x CC:

27-Aug-16: 2.35 x 2.32 x 3.13 cm (diagnosis)
25-Feb-17: 2.48 x 2.44 x 3.18 cm
26-Aug-17: 2.48 x 2.53 x 3.19 cm
24-Feb-18: 2.36 x 2.54 x 3.01 cm

Note, the CC dimension is reported as the height in the aspirin study, but the diagonal here.

Also, my last hearing test last Friday was slightly better than the past few months.

These are my measurements and we'll see what the radiologists report says.

In any case, it certainly is not growing.

SP

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Re: New diagnosis from Sydney Australia
« Reply #42 on: November 26, 2018, 09:05:04 pm »
Hi AN Sydney!

These measurements indeed show a heartening downward trend. Will the 6 monthly MRIs be ongoing for you ?

Are you doing anything else as far as self treatment/management goes ? (besides the aspirin).
I've had some challenges post CK and am looking to research and implement as many self care strategies as I can.

Be well,

Stella
2.9 cm Left-side AN (Aug 2018)
2.9 cm Left-side AN (Aug 2017)
3.2 cm Left-side AN (Aug 2015)
CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)

ANSydney

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Re: New diagnosis from Sydney Australia
« Reply #43 on: November 26, 2018, 10:28:50 pm »
Hi Stella,

I would say that the tumor size has basically stayed unchanged, which in itself is heartening. I'm going to continue the 6 monthly MRIs for a bit longer, but if it's still stable in 1.5 years time would feel comfortable to stretch it out.

I'm not doing anything for treatment. Even the aspirins have stopped. Maybe I should start them again.

By the way Stella, thanks for your support when I was first diagnosed. It was very valuable. As all others when first diagnosed, I was like a deer in headlines. As I mentioned at the time this whole situation is an information minefield. I'm much better across things now including how to do my own measurements and how knowing how many tumors grow following diagnosis (a lot less than is thought by others).

AN Sydney

SP

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Re: New diagnosis from Sydney Australia
« Reply #44 on: November 27, 2018, 12:05:54 am »
Well unchanged is good, especially in an AN case!

I'm glad my musings on my journey were helpful. It's nice to have your support on my journey too.

I think it's great that you are confident in your measurements; I've sure had my challenges in the way measurements were reported from one MRI to another, it was so hard to get consistency.

Totally agree with the information minefield; we make the best decisions we can with what we know (or can find out) or sometimes even gut feel.

keep well,
Stella
2.9 cm Left-side AN (Aug 2018)
2.9 cm Left-side AN (Aug 2017)
3.2 cm Left-side AN (Aug 2015)
CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)

 


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