ANA Discussion Forum

Pre-Treatment Options => Pre-Treatment Options => Topic started by: ANSydney on October 29, 2016, 04:50:59 am

Title: New diagnosis from Sydney Australia
Post by: ANSydney on October 29, 2016, 04:50:59 am
Hi everyone,

I’ve just become a member of the exclusive club that nobody wants to be a member of, but everyone is so friendly.

I’ve been diagnosed with an acoustic neuroma that is “approximately 3.75cm in oblique transverse diameter, 2.4cm in oblique AP diameter and 2.1cm in the cranio-caudal height”. I’ve translated that to 2.4x2.1x2.65+1.1 IAC extension.

I’ve got about 33 dB hearing loss in the right ear, but 100% speech discrimination. There's a slight bit of tinnitus which comes and goes. I’ve also got altered taste on the right side of my tongue. Occasional dizziness, but very mild. That’s it for now. I’ll let you know how things progress.

I’ve been doing a lot of research and I’m not rushing into anything.

It looks like, once you’ve been diagnosed, the only way is down:
1)   If you choose to watch and wait you will slowly decline
2)   If you choose microsurgery, there’s an immediate hit and that’s about it
3)   If you choose radiosurgery, nothing happens at first, things get worse about 6 months to 12 months out and then things get better.

It certainly is a good thing to have a good feeling for probabilities.

My main conclusion is that it’s an information minefield.
Title: Re: New diagnosis from Sydney Australia
Post by: v357139 on November 04, 2016, 07:43:36 pm
Hi there sorry you had to join our club, but take heart.  There is a wealth of information here, and we can help you get through this.  Regarding wait and watch.  Some people wait and watch, and never need surgery.  The tumor does not always grow more, and does not always cause more damage.

I can be difficult to navigate the choices and come to a decision.  I myself had a hard time deciding, and I took 9 months to decide.  You've done some good research to start.  I suggest you see a few different doctors and ask their recommendation.  Best to talk to experienced AN doctors with good track records.  Best to talk to doctors that are very experienced in radiosurgery about that approach, and ones that are very experienced in surgery, about that approach.  Different doctors can have different opinions based on what they are good at.

You may also find it helpful to PM a person who has commented on this site.  Many people are willing to talk, and talking to someone who's been through it can help a lot.  Feel free to PM me as well.
Title: Re: New diagnosis from Sydney Australia
Post by: Tumbleweed on November 05, 2016, 06:35:23 pm
Regarding wait and watch.  Some people wait and watch, and never need surgery.  The tumor does not always grow more, and does not always cause more damage.

The overwhelming majority of ANs do in fact grow more, so I wouldn't count on one that is already substantial in size to suddenly stop growing.

ANSydney, my experience and that of others on this forum is that symptoms typically worsen for the first couple of weeks to as long as a couple months after radiosurgery. Somewhere around the 3- or 4-month mark, it's not unusual for symptoms to worsen again. Typically by the time the radiosurgery patient is 12 months past treatment, things calm down and generally improve (although hearing typically doesn't improve, it can for the lucky few).

I'm guessing your tumor is too large along the oblique transverse axis for radiation treatments, but you should ask doctors anyway before you rule out that option. Dr. Steven D. Chang (highly esteemed Stanford Medical Center doctor) is a great resource: sdchang@stanford.edu. He will review your MRI and give his recommendation for free. Since he performs both CyberKnife and microsurgery, I regard him as unbiased as to the type of treatment he recommends for each patient on a case by case basis.

Good luck!

Best wishes,
TW
Title: Re: New diagnosis from Sydney Australia
Post by: Jet747 on November 05, 2016, 09:27:51 pm
ANSydney,

You list a few options...there is actually another, surgery and radiation.  The surgery is sometimes called debulking surgery.

This is the approach I took.  In a nutshell the surgery is done to drastically reduce but not 100% remove the tumor.  This gives you a good chance of retaining your hearing and minimizing some unpleasant effects if certain cranial nerves are damaged.

Your medical team then follows up in 6-12 months with radiation to kill the remaining tumor.

I'm definitely not a Dr. and don't portend to understand the idiosyncrasies of your case. 

It is just an avenue you can explore with the help of your Dr.'s.

Good luck down under!  Feel free to PM if you have any specific questions.

I have several friends that live in your beautiful country (Adelaide, Australia) and hope to visit them someday!!!

Best,
Jet

http://www.anausa.org/smf/index.php?topic=21969.0
Title: Re: New diagnosis from Sydney Australia
Post by: ANSydney on November 07, 2016, 08:46:01 pm
Thanks v357139, Tumbleweed and Jet747 for reaching out. It's good to hear from people that are further advanced on this journey.

v357139, like you, I'm not going to rush into a decision.

Tumbleweed, two-thirds of acoustic neuroma tumors  don't grow, so I think it's nice to have a 6-month follow up MRI before committing to a decision. I've heard good things about Dr Chang, but health insurance in Australia won't cover such a procedure, so it is expensive. However, it may come to that...

Jet747, surgery + radiosurgery certainly has its place, however if the radiosurgeons thinks he can safely treat it, I'd rather go for one (or the other). Your 6.3 cm cystic AN would have been a good candidate for surgery followed by radiosurgery. My CPA diameter is only 2.65 cm, which still has room to grow before radiosurgeons get reluctant.

I'll fill you in on my progress, particularly my 6-month MRI which should happen at the end of February 2017.
Title: Re: New diagnosis from Sydney Australia
Post by: Tumbleweed on November 14, 2016, 08:23:22 pm
ANSydney, you obviously have access to different research from what I've seen, as it's been my impression over many years that the vast majority of ANs do grow. However, I'm happy to know that you've seen contradictory -- and more hopeful -- research findings (and in fact, my hypoglossal tumor has not grown for 8 years, which lends some support to your findings, as it's also a schwannoma). As for your assertion that your tumor has room to grow before radiosurgery is not an option, my impression over the many years I've been on this forum is that CK and GK are ruled out by most doctors once the tumor exceeds 3 cm in measurement along the transverse oblique axis. If you wish to keep either of those treatments as an option, I recommend you do not wait to decide on a treatment course and get a deadline for treatment from your chosen doctor. Speaking from personal experience, ANs can have unanticipated growth spurts. (Mine suddenly grew at 5x the normal rate over a span of five months.) If you wait too long before choosing a treatment plan, your options may become limited much quicker than you think. I'm not trying to scare or debate you; just trying to help.

Just my two cents,
TW
Title: Re: New diagnosis from Sydney Australia
Post by: Tumbleweed on November 15, 2016, 02:48:32 am
ANSydney, there are two more points I think you should carefully consider. First, your AN measures 3.75 cm along the oblique transverse axis. The average growth rate for ANs is around 2 mm per year. So, your AN has likely been growing for very many years. Not to discourage you but rather to encourage you to look at your situation with eyes wide open, that your AN might suddenly stop growing when it's apparently been growing for so long is statistically not the most likely outcome. Also consider your age; I don't know how old you are, but tumors generally grow slower or stop growing in older people (whose cells don't regenerate as fast as in people who are young). I'm trying not to be pushy or indelicate here, but I really think you should accelerate your consideration of options now, before your cranial nerve functions are further compromised.

I apologize in advance if you feel I'm being too assertive here, and I realize these important decisions are yours alone to make. I waited longer than I should have to seek treatment, and I suffered irreversible hearing loss as a result. I don't want to see you have similar regrets.

Best wishes,
TW
Title: Re: New diagnosis from Sydney Australia
Post by: ANSydney on November 15, 2016, 05:07:00 am
Tumbelweed,

Thank you for your concern. I'm certainly looking at all my options, but I will not act until I know the result of my 6 month MRI. I've seen and heard of some terrible outcomes.

The main driving medical quote for me is from a paper entitled "What intervention is best practice for vestibular schwannomas? A systematic review of controlled studies" from BMJ Open dated 4 February 2103, The conclusion is:

"The available evidence indicates radiosurgery to be best practice for solitary vestibular schwannomas up to 30 mm in cisternal diameter."

My cisternal diameter is about 2.6 cm, so I've got 4 mm up my sleeve. It's a gamble, but only a small gamble. By the way, once you've been diagnosed with an acoustic neuroma, all paths are a gamble; some of them quiet scary.

I'll be checking my interpretation of cisternal diameter by consulting the Gamma Knife unit here in Sydney.

What can happen in 6 months?
1) It could grow >4 mm. This would be sad as then I may be pushed to surgery which is scary.
2) It could grow >2 mm. This would be to proceed with my preferred intervention, which is currently radiosurgery
3) It could grow <2 mm. This would buy me another 6 months to increase my knowledge base
4) It could not grow at all. More years to increase my knowledge base, but more importantly, medicine's knowledge base (eg. pharmacological solution)
5) It could shrink. If this continues, no treatment would be required.

I don't know the probability of each, but I suspect the closer to the middle of the five, the more likely they are. My 6 months MRI will tell me what is happening.

By the way, I'm monitoring my symptoms all the time including monthly formal hearing tests and daily informal hearing tests (relative measure only) using http://newt.phys.unsw.edu.au/jw/hearing.html . Any significant degradation would be cause to accelerate the decision making process. I'm also taking a quarter of aspirin a day since it may help and is well tolerated (and has other benefits).
Title: Re: New diagnosis from Sydney Australia
Post by: Tumbleweed on November 15, 2016, 08:05:32 pm
ANSydney, it sounds like you know the risks and are taking them on an informed basis. The only other thing I might ask is, seeing as radiosurgery is your apparent preferred treatment course, have you consulted any radio-surgeons yet and asked them 1. if you are currently a candidate for radiation, and 2. what their cutoff is (in tumor measurements) at which point they would refuse to treat you with radiation? Seems like that would be good to know, so you're not proceeding (delaying treatment for six months) under false assumptions. Every radiation practitioner has a potentially slightly different cutoff for radio treatment, and it typically has more to do with the location of the tumor with respect to the brainstem than with a simple measurement. Some people on this forum were rejected by most radiation specialists because of their tumor size/location but then managed to find one doctor who would agree to treat them with radiation. But the options become narrower (as you already know) as the darn thing grows.

I really do wish you the best. No matter how you slice it, it's a tough row to hoe.

Best wishes,
TW
Title: Re: New diagnosis from Sydney Australia
Post by: v357139 on November 15, 2016, 08:51:18 pm
AN Sydney,
I'll share my experience in case it's of any help.  Mine was 2.7 when I was diagnosed.  I waited 9 months to get my second MRI.  Mine did grow to 3.5 or 3.6 in that time.  It is rare for it to grow that fast, but it does sometimes happen.  There is the 2mm average per year, and then there is also the range from no growth to fast growth (mine).  6 months sounds reasonable to me.  If you are going to wait, always good to discuss that with an experienced AN doctor, to be safe.  Also if you are going to wait, it would be good to consult with all the doctors you plan to see sooner rather than later.  Good to get as much as you can done upfront, just in case it grows fast, you don't want to have to go into hurry up mode.  I had a great surgery result, but I was a bit lucky.  If I had to do it again, I would have tried to decide sooner.

If you are considering radiosurgery vs surgery - I think it helps to talk to experienced radiosurgery experts about radiosurgery, and experienced traditional surgeons about regular surgery.  That is the best way to get the range of expert opinions on the pros and cons, in my opinion.

Let us know how it goes.  All the best.
Rich
Title: Re: New diagnosis from Sydney Australia
Post by: ANSydney on November 15, 2016, 10:02:00 pm
Thanks Tumbleweed and Rich, the question of how much a tumor will grow before radiosurgeons refuse to treat it is an interesting one.
Title: Re: New diagnosis from Sydney Australia
Post by: caryawilson on November 18, 2016, 12:53:12 am
ANSydney,

You are right.. "Information Minefield".  The club is small, and so the sample size is either limited or over too great a duration.  Sounds like you got your hands on it.  I have heard of unique stories where ANs have shrunk, so I guess it may make sense to wait for the follow-up.

However, if your 6 month MRI shows "no growth", don't you still need to seriously consider treatment or else constantly worry that it may start growing anytime?  At this point, I agree no rush in making a decision on the specific treatment, but isn't the only decision to move forward with some type of treatment?   Just curious.....

I was lucky / unlucky.. At 4.5 cm, the only treatment was immediate surgery. 


Title: Re: New diagnosis from Sydney Australia
Post by: ANSydney on November 18, 2016, 01:29:09 am
Hi caryawilson,

If my 6 month MRI shows no growth then I would reset the clock. That is, go anther 6 months.

I would continue this until my age was such that it would make surgery or radiosurgery more problematic.

In the mean time my knowledge is increasing and more importantly, a pharmacological solution for slow growing tumors may come along. (What's wrong with very low dose bevacizumab ?)

I may get growth further down the track, but that would not be any different from immediate action. (There are several papers that show an initial watching period does not change outcomes.) Or I get shrinkage. The following is the abstract for "Vestibular Schwannoma: spontaneous tumor involution". Penido Nde O1, Tangerina RP, Kosugi EM, Abreu CE, Vasco MB. 2007.

The natural history of Vestibular Schwannomas (VS) is yet not totally known, but most of them have the tendency to slow growth, sometimes without any kind of symptoms during the individuals entire time. About 69% of diagnosed VS do not grow at all and 16% of these can even regress. Considering tumors that grow, about 70% have grown less than 2mm an year. Advanced radiological diagnosis, especially magnetic resonance imaging with gadolinium helps us diagnose small and less symptomatic tumors. Treatment of choice still is complete tumor resection. Surgical approaches have improved considerably and have helped preserve facial nerve function and hearing. Considering VSs natural history, there is a possibility for conservative treatment for these tumors, because their growth in the first year after diagnosis predicts tumor growth behavior in the next years. Surgery should be done in cases of tumor growth, patients desire or symptoms worsening. Moreover, in terms of postoperative sequelae, there is no difference between patients who underwent surgery immediately after diagnosis and those who underwent initial conservative treatment for these tumors.
Title: Re: New diagnosis from Sydney Australia
Post by: caryawilson on November 18, 2016, 11:13:07 am
ANSydney - Thanks for sharing.  Very informative.
Title: Re: New diagnosis from Sydney Australia
Post by: ANSydney on November 18, 2016, 03:37:41 pm
Please note, "About 69% of diagnosed VS do not grow at all and 16% of these can even regress". It's a poor way to word it, but the regression rate is not 16%, but 69% of 16%, which is 11%. Still, not negligible.
Title: Re: New diagnosis from Sydney Australia
Post by: caryawilson on November 19, 2016, 08:46:59 pm
ANSydney,

Do they believe tumor size may be a factor in those "11%" that may regress?  I wonder if small, medium or large have a greater propensity?

Title: Re: New diagnosis from Sydney Australia
Post by: ANSydney on November 19, 2016, 09:19:15 pm
caryawilson,

Of the 11% that did regress, it's difficult to see if small, medium or large would be slightly better.

The literature has mixed answers; some say that size is important, while others say that size is not important.

If anyone knows what shifts things towards regression, I'd love to know! (and maybe a few others!)

I think I've only heard of two cases of tumor regression on this forum. Not sure what the class size is (for just wait and watch, no treatment).

All I can do is speculate. The remainder of this post is just speculation and my thoughts. A tumor, in my mind, has a hard time to survive. It needs to provide its own vascularisation. The larger the tumor, the harder it would be to provide vascularisation. At any one time I suspect parts of the tumor are growing and parts are dying. A larger tumor would also grow more since the growth aspect is exponential. It's a dynamic process. If the growth outdoes the parts that die of the tumor grows, and the converse would be true.
Title: Re: New diagnosis from Sydney Australia
Post by: ANSydney on February 24, 2017, 04:54:30 am
Tomorrow morning I'll have my first follow up MRI, 6 months after the first MRI. Tomorrow, or soon after, I'll learn if my tumor is growning, staying the same or shrinking.

I'm predicting it has not grown (more than 2 mm) and will do the same at the 1 year MRI.

This is not wishful thinking, but knowing that only generally about 20% of tumors grow (more than 2 mm). In my specific case, I have two things that make the odds of growing even less than generally. The first is that I first noticed hearing loss more than 3 years ago, so given that Stangerup et al 2006 had no growing tumors more than four years after diagnosis, it appears that they reach their maximum size after about four years of symptoms appearing. The second favorable factor is that I have not had symptom progression over the years. My hearing PTA has only dropped about 7 dB in over 3 years and other symptoms are stable.

The most significant factor regarding future growth is growth in the first year. I don't know this yet.

Paldor et al 2016 in their meta-analysis found no correlation with growth when looking at age, sex, hearing loss at presentation, vertigo, initial tumor size, location (ICA or CPA) or tumor side. They found that tinnitus and imbalance may be predictive of growth, neither of which I have.

So, I'm predicting about a 10% chance of growth (>2 mm), 10% chance of shrinkage (<1 mm) and about 80% chance of stable size.

I'll let you know which category I'm in once I know. (Surgery scares me more than the tumor.)
Title: Re: New diagnosis from Sydney Australia
Post by: ANSydney on February 24, 2017, 06:45:54 pm
I had my 6 month MRI done this morning. I was given the films straight after the MRI, which is somewhat surprising. Last time I had to pick them up a few days afterwards, together with the radiologists report. This time, straight away, but no disk and obviously, no radiologist report.

Looking at the films, it's hard to tell if there is growth. It looks about the same size. The disk is so much better for examining the tumor and taking measurements.

There certainly isn't rapid growth. It looks like I'm in the category that I gave an 80% chance, which is stable (0 - 2 mm) growth. I'll know, and I'll fill the community in, the definitive answer once I get the disk later this week.

Title: Re: New diagnosis from Sydney Australia
Post by: caryawilson on February 24, 2017, 06:57:28 pm
In the US, while NOT standard procedure, you can get the MRI disk immediately after the finishing the procedure.  The report needs to be provided by the Doctor, but you can get the film immediately.  For myself, and my Dad with cancer,  I have requested the disk, 30+ times, and received it every time.

Great to hear.  Congrats.
Title: Re: New diagnosis from Sydney Australia
Post by: mrwva17 on February 24, 2017, 09:56:24 pm
Sounds positive so far. Looking forward to and hoping for a great official report for you!
Title: Re: New diagnosis from Sydney Australia
Post by: riabovamd on February 26, 2017, 11:33:14 pm
Helllo,
Here is my humble opinion (I am a physician, just had mine AN removed last month).  Your pest is considered large, if you sit on it it will cause facial nerve damage and increased intracranial pressure.  It is completely removable with surgery so it should recur.  If you opt for radiation it might recur.  I highly recommend surgery by experienced surgeon (over 2000 cases done)in tertiary center.  You will be back to normal self in 2 weeks and for the rest of your life.  I recommend House clinic Dr. Schwartz, if you consider US locations.  I was back to work in 2 weeks. Good luck.
Title: Re: New diagnosis from Sydney Australia
Post by: ANSydney on February 27, 2017, 02:46:16 am
I got the MRI disk today and did each measurement 6 times to be sure. Looks like 0 to 1 mm growth, which is great. I'll call that stable. I'll see what the radiologist's report says. If it's in agreement, I can go another 6 months to again check its natural growth. I'll provide an update/confirmation once I've got the radiologists report.
Title: Re: New diagnosis from Sydney Australia
Post by: ANSydney on February 27, 2017, 03:05:28 am
Hi riabovamd, thank you for your thoughts. I'm monitoring my symptoms very closely. If they get worse, that would be a trigger to move to interventions. (The other trigger is significant growth).

I'm doing formal hearing tests once a month. I also do informal hearing tests daily. I'm on the lookout for signs of dizziness, vertigo, double vision, facial numbness or anything out of the ordinary.  In the previous radiologist report is stated that the fourth ventricle and grey matter looked normal. Nothing looks different in this MRI done 2 days ago.

Is there a way of self monitor cranial pressure? That is probably the greatest risk at this stage; hydrocephalus.

My dilemma is that I have very few symptoms. My hearing is still Gardner Robertson Class II. The only other symptoms is the right side tip of my tongue has altered taste. Both are mild. I have no dizziness or any debilitating symptoms.

Being in Australia, I don't (without paying) get the opportunity to go to a 2000 cases done center. The best we have is about 100 cases done center. That's one of the reasons my current default intervention is gamma knife.
Title: Re: New diagnosis from Sydney Australia
Post by: Cheryl R on February 27, 2017, 04:34:26 pm
From reading all your posts, I would say that you have probably done more stress on yourself with all your research and looking for symptoms than if you just went ahead and had surgery and get on with your life.
                                             Cheryl R
Title: Re: New diagnosis from Sydney Australia
Post by: ANSydney on February 27, 2017, 04:45:46 pm
I've found the research interesting and worthwhile. I'd like to do more. I'm not stressed by the diagnosis at all. The thought of surgery and some of the things that can go wrong are very stressful. There are some people on this forum that have had very bad outcomes.
Title: Re: New diagnosis from Sydney Australia
Post by: Cheryl R on February 27, 2017, 05:11:26 pm
That is because the ones who do well leave the forum and Facebook.       I have been thru the AN journey for over 15 yrs and been to 5 of the AN symposiums( which are no longer being held) and met and known many ANers over time who have done well.
    Yes many of us may be SSD but the there can be adjustments in life for many health conditions, not just an ANer.       But personally I can only speak from my own experience and not each individual person.
                                          Cheryl R
Title: Re: New diagnosis from Sydney Australia
Post by: riabovamd on March 19, 2017, 10:24:38 am
Hello, I started writing you a long note, and computer crashed, not sure if you got it (in case if I am repeating myself).  So, to reconcile what crashed I shared my own experience with intracranial pressure.  My cyst of 4.7 cm full of crap was compressing cerebellum and brain stem and was obstructing 4rth ventricle. Symptoms of vestibular nerve compression were similar but thousand times milder.  Nausea with vestibular  nerve, and vomiting when changing position due to intracranial pressure.  Every morning for 3 months leading to the surgery when waking up and getting out of bed, I had to run to the toilet and vomit without any relieve. Changing position would make the mass effect (already pressing on the 4rth ventricle )  even more, causing pressure on the vomiting center  of the brain stem, and  increasing intracranial pressure even further.  Also, vision was intermittently blurred to the point that reading was a struggle, sending texts or looking up media on the phone was a struggle.  All that went away after surgery day 1.  You do not want to wait for that feeling. 
Title: Re: New diagnosis from Sydney Australia
Post by: ANSydney on March 19, 2017, 04:05:40 pm
Hi riabovamd. Didn't get any other note, just this post here. I would be interested in anything related to elevate intracranial pressure. As I already stated, your symptoms sounded terrible. My biggest fear is brainstem compression resulting in symptoms, and hydrocephalus. Not sure what the early warning signs are.

I will line up a surgeon in case things go south. Until I get radiological confirmation of significant growth or significant symptoms beyond vestibulocochlear or facial nerve neuropathy, I will keep having serial MRIs (without contrast).
Title: Re: New diagnosis from Sydney Australia
Post by: riabovamd on March 19, 2017, 05:13:38 pm
Morning nausea/ vomiting is a sure sign of brain compression... 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 think you can even contact her for some info.  If you get some advice, pls let me know, too.  Good luck with your self designed  "wait and watch" approach, keep posting.
Title: Re: New diagnosis from Sydney Australia
Post by: Tumbleweed 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
Title: Re: New diagnosis from Sydney Australia
Post by: PaulW 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.
Title: Re: New diagnosis from Sydney Australia
Post by: ANSydney 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.
Title: Re: New diagnosis from Sydney Australia
Post by: Tumbleweed 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
Title: Re: New diagnosis from Sydney Australia
Post by: ANSydney 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)
Title: Re: New diagnosis from Sydney Australia
Post by: ANSydney 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.
Title: Re: New diagnosis from Sydney Australia
Post by: ANSydney 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.
Title: Re: New diagnosis from Sydney Australia
Post by: WhiskyJoe 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?
Title: Re: New diagnosis from Sydney Australia
Post by: ANSydney 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.
Title: Re: New diagnosis from Sydney Australia
Post by: ANSydney 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.
Title: Re: New diagnosis from Sydney Australia
Post by: v357139 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.
Title: Re: New diagnosis from Sydney Australia
Post by: ANSydney 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.
Title: Re: New diagnosis from Sydney Australia
Post by: SP 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
Title: Re: New diagnosis from Sydney Australia
Post by: ANSydney 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
Title: Re: New diagnosis from Sydney Australia
Post by: SP 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
Title: Re: New diagnosis from Sydney Australia
Post by: Cityview on November 27, 2018, 06:21:28 pm
ANSydney

Congratulations on two years watch and wait

Stella- wishing you good health

Just Spreading "Light and Hope" - a motto I've adopted.
When things seem negative I just think of this. Good things can happen.