what are some of the symptoms of AN effecting brainstem?

[leapyrtwins]

Tumbleweed -

I could be completely wrong about this, but IMO the clumsiness is related to balance issues.  I found that I was doing some of the same things you mention prior to being diagnosed with my AN.

Question - are you scared about radiation specifically? or treatment in general?  Your post makes it sound like you are doubting your decision to have radiation, but I'm not entirely sure that that is what you are saying.

Jan

[Tumbleweed]

Thanks for your reassurances, Steve. Man, do I need them. It helps.

Sincerely,
Tumbleweed

[Tumbleweed]

Hi, Jan:

I'm afraid of what the radiation will do to healthy brain and nerve tissue. And, yes, I've flipflopped several times in the past 10 days over getting treated. But I am crystal-clear that CK is my preferred treatment. I just want the damn tumor to magically disappear so I don't need to do anything! 

I realize my emotions are all probably very normal. And logically, I've come to the space where I feel I should now get treated and soon. I just get these little rushes of poisonous adrenaline when I think about having beams of radiation enter my brain. I think I've watched too many old news clips about the horrors of Hiroshima. 

Does anyone know how much radiation each beam from a CK machine delivers to healthy tissue on its way to the focal point (the tumor)? Compared to X-rays, for example? Knowing this might calm me down (or really freak me out, depending on the answer!  ).

Thanks,
Tumbleweed

[Kaybo]

Tumbleweed~

When I was 1st diagnosed the ENT/surgeon and the Balance Center both asked me if I had been dropping things - speciafically if I had been dropping pens & the soap in the shower a lot??

K

[Tumbleweed]

Sounds just like me, K. I wonder if I'll get any less clumsy after treatment (if the tumor eventually shrinks)?

Tumbleweed

[sgerrard]

Does anyone know how much radiation each beam from a CK machine delivers to healthy tissue on its way to the focal point (the tumor)? Compared to X-rays, for example? Knowing this might calm me down (or really freak me out, depending on the answer!  ).

That's a sensible question, and I worked it out one time myself. If you have 6 Gy per day, with 150 beams, then the areas away from the tumor each get hit by one beam, or about .04 Gy, usually written as 40 mGy. A typical CAT scan of your belly for a kidney stone (had one) is also about 40 mGy.

So very roughly, the rest of your brain is getting the equivalent of 3 or 4 CAT scans during the week of treatment. You don't want to repeat that every week, but it is low enough to be tolerated well by most people, and should not do any damage.

I don't know if that is really a fair calculation, you would need to get into it with a radiation oncologist to get the true exposure levels away from the tumor, but I think it is a reasonable ballpark estimate.

Steve

[Tumbleweed]

Steve, thanks a lot for sharing your calculations. Your logic makes sense to me. That said, Dr. Chang told me 7 months ago that he would treat my AN with a dose of 11.5 Gy per treatment. So, using your math, my healthy tissue will be getting the equivalent of around 6 CAT scans over the course of 3 treatments.

But it might not be that much, anyway. Dr. Chang also told me at the time that the total biologically equivalent dose is not arrived at by simply adding 11.5 + 11.5 +11.5. In fact, the total would be "only" 18 Gy. So maybe 6 CAT scans spread out over 3 days only equals the same as getting about 3 CAT scans at once. Pure conjecture on my part.

Do you know if the CK machine at Stanford delivers 150 beams, or was that just a wild guess?

Also, how much radiation does a CAT scan deliver vs that which an X-ray delivers?

When I go for treatment, I'll try to remember to ask my RO to put this in terms we laypersons can understand. If I learn anything worthwhile, I'll report it back to the group. Would be valuable to know.

In the meantime, I'm heartened that, by your calculations at least, the dose to healthy tissue isn't equivalent to, say, 100 CAT scans. I was kinda imagining the worst, so you've set my mind a little at ease. Thanks again, Steve.

Best wishes,
Tumbleweed

[jb]

11.5 Gy per day ?    I haven't heard of more than 6-7 Gy for the 3-day Tx.

[4cm in Pacific Northwest]

My brain stem was a letter S before surgery. I had weird symptoms that could not be explained as being AN tumor symptoms but “possibly� brainstem related.

(CISS) = Completely Improved since surgery
(SISS) = Somewhat improved since surgery

•   Inability to sleep through the night (CISS- after 8 months post op)
•   Constipation (CISS)
•   Weird Sensation of water droplets falling on my head (CISS)
•   Sharp pain between shoulder blades (SISS)
•   Clumsiness after 3 pm e.g. dropping dishes and utensils while preparing dinner etc.(SISS)
•   Injuring knee, back and hip due to unrealized balanced issues eg. catching myself (SISS)
•   Heart palpitations (CISS)
•   Facial flushing after eating (CISS)
•   Fatigue (CISS)
•   Feeling as if I was ADHD  (CISS- I think this was more related to the sleep deprivation issues)
•   Scattered- short term memory issues (CISS- I think this was more related to the sleep deprivation issues)


I honestly have to say that it was at 9 months, after surgery, that I finally felt like my old self again.

Daisy Head Mazie

[sgerrard]

Hi Tumbleweed,

The 150 beams was a wild guess. Unlike GK, the treatment planning for CK allows as many or few beams as needed. They can move the head anywhere and shoot any angle, so the planning program just works out what arrangement will deliver the most zap to the tumor and the least zap to the surrounding anatomy. Tone Control once reported something like 300+ nodes in his plan, but I'm not sure what that really means. 300 beams??

I haven't heard of 11.5 Gy per day either. Maybe it was 7.5? I do know that the Gy per day can't be just added up. My treatment of 3 days x 6 Gy was considered equivalent to 1 day of GK at 12-13 Gy, using some mysterious math known only to the radiation oncologists. I would leave the calculations to the pros who actually know what they are doing.

If you do get some layman explanation of all this at Stanford, it would be good to hear about it.

Steve

[Tumbleweed]

11.5 Gy is what I noted Dr. Chang told me during our initial consultation by phone. (He was one of the doctors who reviewed my MRI for free, bless his heart, and I ultimately chose him to treat me.) It's possible but unlikely that I misunderstood, as I am very methodical. Also, he cited 18 Gy as the total biologically equivalent dose I would get, which I believe confirms a higher daily dose than 6-7 Gy.

I'll know in a couple weeks and will report back to the group after I get treated.

On another note, I'd been having some misgivings about being treated sooner rather than later, but that's not the case any more. Yesterday, for the first time in 4 years, I became quite dizzy and was feeling totally wiped out. That convinced me I should get this thing zapped ASAP. In a way, my worsening symptoms were a blessing, because I now am 100% resolute in my decision to get CK in a couple weeks.

Best,
Tumbleweed

[leapyrtwins]

Tumbleweed -

I am thrilled to hear that you are 100% certain of your decision   IMO that's exactly where you want to be before you journey into any type of AN treatment.

After your last post to me, I have to confess, I was a little doubtful that you were 100% sure.  I almost responded to your post last night asking if you were confident in your choice, but I didn't want to "push" the issue.  Today I know that you are confident.  It's a wonderful feeling, isn't it?

Please report back to us after the CK; we like to know how our fellow forumites are doing.

Best of luck,

Jan

[4cm in Pacific Northwest]

Tumbleweed,

I am assuming that you are travelling for this... (correct me if I am wrong)


First time I was at Stanford I paid a fortune on accommodations and car rental. I was not too in-the-know about Palo Alto and Stanford and wish I had networked with experience Stanford patients, omn the forum, before hand.

Lorenzo told me about Stanford House, where he stayed
http://www.stanford.edu/dept/rde/guesthouse/
(You have to give you doctor’s name to register as a guest and for the medical patient rate)

I just stayed there for my follow up MRI and it was a good choice. I wish I had known more about it before treatment. Still the apartment we rented allowed me shaded and paved places to walk with a walker and my husband to cook as I was having surgery compilations -that you will not have since there will be no incision or craniotomy performed. It was pleasant. The rooms at Stanford House are small but the place is tasteful and restful. There is not a lot of shade to walk in and the paths are gravel. The hotels rates in the summer, close to Stanford are outrageous… so be sure to book your rooms as soon as you know of your treatment dates. Book an extra day that you need- as you can always cancel later if you feel good to return home sooner. If you end up not feeling well and needing to stay longer they may be booked up and you are stuck with no room... You do not want this- thus book an extra day. They were also pretty flexible on check out times, with me, when my medical appointment went overtime. The ENT department just called their front office on my behalf. There is a shuttle bus that will take you from there right to the hospital and ENT departments etc.

Remember to keep all parking, cafeteria, coffee, accommodation, taxi receipts etc. I claimed ALL of these on my tax return. If you rent a car I can give you tips on that one too.

If you have any other logistic questions about Stanford or the SJC airport there is a group of us that can inform you of the ins and outs.

Also know that the most affordable and best cafeteria on campus is at the children’s cancer hospital- and it has a beautiful cheerful patio. The coffee in the cafeterias is awful and you are better to get your coffee at the various n campus coffee bars.

The Courtyard Cafe - located on the ground floor of LPCH.
Open 7:00 am - 7:00 pm, Monday - Friday and 7:00 am - 3:00 pm, Saturday and Sunday.

Here is a link for food
http://cancer.stanfordhospital.com/forPatients/amenities/cafe/default

Off campus (restaurants there are pricey)
http://www.paloaltoonline.com/restaurants/

I packed breakfast items for Stanford house. There is an eating area with toasters and microwave downstairs. Also for an extra $5/ night you can get a little fridge and microwave in your own room.


Internet connection while in the hospital area
http://cancer.stanfordhospital.com/forPatients/amenities/cybercafe/default
The Stanford House has free wireless

PM me if you have any questions. I was not a GK patient  as I am from the “crater lake size hole-in-the-headâ€? group  - nevertheless I can give you tips on parking, food on campus …and what you should pack to reduce costs ahead of time. Steve would also be a good contact for you. Those California Gamma Rays left him with such a kind, gentle and SUNNY disposition… I am glad he and I are within the same Greater Metro area… I have met him and I think he would be a good buddy for you to have at the end of your cell phone while at Stanford…

Keep moving forward…

Daisy Head Maizy

[sgerrard]

Tumbleweed,

If your effective dose is 18 Gy (versus my 12 Gy) then it makes sense that your daily dose would be higher, so you probably did hear it right. Your AN is bigger than mine.

I was wondering how long the "no symptoms" period might last, and was tempted to say something, so in a way I too am glad that the AN "spoke up" and reminded you of what it is capable of and why you are doing this.

I'm not much help on resources at Stanford, since I stayed with a friend in San Francisco the whole time, who served as my full time guide. Feel free to contact me if you like, though, as Daisy suggested, if you want a supporter during your CK experience. If you PM me, I can send you my cell number.

Steve

[Tumbleweed]

Thanks so much to all who have offered their help. I was pretty wiped out for a few days, so I didn't log in to the Forum during that time.

DH Maizy, I really appreciate the long post you wrote. There's a lot of useful info in there. My wife and I decided early on to bite the bullet and rent a room at a nice Bed & Breakfast. She looked at the accommodations at Stanford and decided that, while nice and more affordable, I would get more sleep if we were in a smaller, quieter place. I always have a terrible time adapting to sleeping when I travel and stay anywhere that is not really quiet. (It's not uncommon for me to get only a few hours sleep per night when I'm away from home.) I'm sure the Decadron will be a huge help with my insomnia!  Anyway, she booked us into a B&B that sits on a 1-acre plot. She is my angel, always thinking of what will be best for me and my healing. I'm sure we'll put all your excellent info on Stanford resources (especially the cafeteria and off-campus restaurants) to good use! Thanks again!

Thanks, Steve, for your generous offer to share your cell phone # and be a support. I may take you up on that. The reason I've used an alias on this forum is that I am somewhat famous and feel I must carefully guard my identity to keep word from leaking out about my condition (it would destroy my career, for reasons I won't go into). I'm sure you would be very discreet, Steve, but for my own peace of mind, I've only told immediate family and a few of my very closest friends about my AN. That's one reason I appreciate everyone here on this forum so much. It's a place I can get (and give) support and important information, yet still stay anonymous. I'll have a wireless Internet connection at my B&B, so I will probably log on to our Forum from there.

Steve and Jan, you're both right-on about my "relapse" having a silver lining. Part of me was thinking, "what's the big rush in getting treated? I've been doing pretty okay for the past 4 years." One taste of the old symptoms reappearing and I was ready to get zapped ASAP! There is no doubt in my mind now that I am on the right track. Especially since I'm still feeling a bit fatigued and off-balance.

Something really wierd happened to me about an hour ago. I'm wondering it anyone else has experienced this: suddenly out of nowhere, my field of vision on my right side (my "good" side) was obstructed by a large, black shutter opening and closing rapidly three times. It almost looked like the wing of a huge blackbird flapping open and closed. It all happened in about 1 or 2 seconds and then ceased. Scared the s**t out of me!

I cannot wait to get CK at this point!

Best wishes to all,
Tumbleweed