New Book - Useful Information

[Sheryl]

Hi All - wasn't sure where to post this so decided "Useful Information" would be good.  Just received our copy of "Living With a Brain Tumor" by Dr. Peter Black from Brigham and Women's Hospital in Boston.  Had a chance to flip through it and it is a world of information.  When I say "our copy" - both my husband and I have brain tumors - his is a meningioma and has regrown since surgery in '04 and mine is a "wait and watch" schwannoma on the 9th cranial nerve.  We just love to do things together    Purchased it through Amazon.com and added a few other things so order would total $25.00 and free shipping plus no sales tax.  Since we are snowbirds and will be going back to Massachusetts in a few weeks, we've set up appointment for my husband to see Dr. Black.  Hey - I'll take the book and have him autograph it!!!
Sheryl

[ppearl214]

I'm on your heels with that, Sheryl. Was in his office in Feb and saw the flyer for it and need to pick it up (will be there next in August for hearing test, ENT appt and see Dr. Black and Dr. Claus... btw, Kwan likes his ice coffee with sugar and milk... Matthew likes his protein water and Marie... have to find out from Kwan!).

What were you able to gather from the book that you can share with us here? From the synopsis I read on it, it seemed like a very informative read... anything you can share here would be great

BTW, please send warm weather, will ya?

Phyl

[Sheryl]

Hi Phyl and Everyone - Hubby and I are both fighting over the book!!  Should have got two copies - two brain tumors - two books!! From what I could gather from just browsing through, it is very reader friendly; not lots of medical mumbo jumbo - AND, he is very UNBIASED.  Tells it like it is whether it is conventional surgery, wait and watch, or radiosurgery.  A great chapter on "dealing" issues too - makes you feel like you really aren't crazy    Thanks for the info on Kwan, et al, got some chocolate covered key lime coconut patties from Florida - hope they eat candy!!
Sheryl

[ppearl214]

Sheryl, sounds awesome! Will pick it up as well... I wonder if he'll autograph copies of the book for us?   Sounds like a must read.. thanks for sharing this....

...and the candy sounds delish!    FYI... in the waiting room, they serve up drinks and a BIG tray of cookies (choc chunk, oatmeal, etc) and have computers for access during wait time... I've sat there and logged onto this site from their waiting room

Phyl

[MLB57]

Hi Sheryl,

I'm wondering if there is a chapter or section in the book that mentions/addresses radiation options for someone like me who has a re-growing AN w/weakened facial nerve from previous surgery???  I was originally all set to have GK done w/Dr Noren In RI amd recently consulted w/Mass Gen MDs who advised me to have FRS, 5 days a week for 6 weeks to protect my weakened facial nerve... So if you can tell me anything or advise if I should buy the book, your advice will be greatly appreciated!!!

 Much thanks,  Mary...

[ppearl214]

Mary, slight off topic.... have you also checked into CK, regardless if at BI, Stanford, etc?  Curiosity only since it's also fractionated.  Phyl

Sheryl, great question by Mary and I'd be curious on that one as well.  (until I pick up a copy of the book, as well).  Phyl

[Sheryl]

Hi Mary (and Phyl) - The book is divided into five sections:  "An Introduction to Brain Tumors", "Types of Brain Tumors", "Living with a Brain Tumor", "Treatment Options" and "Recovery".  There is also a large appendix with statistics, references and further reading info, centers that treat adults and centers that treat children, and other important resources to access.

In the section entitled, "Treatment Options", there are eight chapters - "Watching and Waiting", "Surgery", "Radiation Therapy", "Chemotherapy", "Newer Therapies", "Drugs for Swelling, Seizures, and other Problems", "Choosing Supportive Care", and "Treatment of Brain Tumors in Children".  All the chapters hit upon the basics and are very easy to understand.  I still haven't read the whole thing, as I flip through it and read certain sections.  What I have noticed is that with all the reading and research we have done and the boards we have accessed, that much of what is in the book is common knowledge for anyone who has done their homework.  Basically is it Brain Tumors 101 but something worth reading and reviewing.  Before you go out and buy the book (which wasn't expensive through Amazon - $11.56 softcover), check with your local library.
Sheryl

[ppearl214]

Sheryl, thank you SO much for that update. So, a terrific book for newly diagnosed?

Question... did he note anything about brain tumors (any and all) and fatigue?  Seems many complain about it pre and post treatment and we've even done an AN survey here re: fatigue....

Thanks!
Phyl

[Sheryl]

Phyl - There are a couple of pages about fatigue - one area talks about fatigue after radiation and another about fatigue after chemotherapy.  Basically in the radiation section, he lists it as a "short-term side effect" and says to "Honor the fatigue by allowing yourself to rest".  He does mention "If you are struggling with severe or prolonged fatigue, your health-care team may prescribe medication like Ritalin or Provigil to help boost your energy level".  Plus, a lot depends on your overall health prior to and during treatment. 

I couldn't find anything on libido - LOL
Sheryl

[MLB57]

HAPPY EASTER EVERYONE!!!

Hi Sheryl--Thanks loads for explaining what's in the book--I'll check out the bookstores so I can flip thru it.. Dr Loeffler said my case was different  because I had surgery and my facial nerve was harmed due to that--but you know there are many of us out there who have had tumor re-growth or residual tumor and we need radiation so you'd think  the brain tumor book would address that(?)...

Hi Phyl----Saw yiour comments about fatigue--Dr Loeffler shook his head (no) when I asked about fatigue with 6 week FSR and I since have spoken w/his secretary(?) Janice who said no one has experienced fatigue.. and no steroids are given... I'm awaiting word via e-mail from Dr Loeffler regarding questions I have (stats, literature,dose,Manufacturer of LINEAC,accuracy, etc).
Will let ya know what I hear.

Hope you have a great EASTER...  Regards, Mary...

[MLB57]

Hi Sheryl/Phil and everyone--Just an FYI--I just called Barnes&Noble here in Leominster and they can order the book for $17.00 (paper back) --so sounds like Amazon deal is better...  Bye for now!!   Mary

[Sheryl]

Hi Mary - The Barnes and Noble book may be hard covered as the one I got from Amazon was soft cover which would explain the difference in price. 

Hey - it better get warm up there or we may delay our trip back for the summer.  I should realize though, especially after living on Cape Cod for almost 30 years, there never really is a "spring".  You usually go from winter into summer!! I know you'll feel really bad but it is quite cool here in S.W. Florida - didn't get out of the low 70s today

[Sheryl]

Geez - sorry didn't read your post thoroughly where you did say it was paper back!!!