AN re-growth--Gamma here I come!!!

[krbonner]

It's good to know that Barker wasn't pushing you for surgery, and was honest about saying he didn't think it was the best option for you.  That must be very reassuring to you, too!  I also met with Loeffler when I was making decisions, and I found him to be very straight-forward and forthcoming.  My understanding is that MGH does at least a couple different types of radiation (one of them being Proton Beam), so I'd quiz Loeffler about the different options and the pros/cons of each, and what he'd recommend. 

Thanks for the update!

Katie

[MLB57]

Follow-up--Hello everyone--After my consult w/Dr Loeffler (he told me 50% chance of GK further damaging my facial nerve because it is already weakened--he said GK would be okay if my facial nerve wasn't already compromised) and he recommended FSR to better protect my facial nerve I  have started 30 sessions of FSR at Mass Gen/Boston MA. I should be donw on Oct 22.

I have the utmost respect for Dr Noren of NE GK Ctr in RI but I had to chose FSR in hopes of a better outcome for my weakened facial nerve. Dr Noren told me his patients who had weakened facial nerves from previous treatment and/or surgery had no further facial nerve damage w/GK, but simply, I was horrifeid to hear Dr Loeffler tell me 50% chance w/GK of hurting my facial nerve so  I am going the FSR route... I hope I have made the right decision... Only difference inevitably, I believe, is the time and $ (unpaid time from work) as I believe either treatment will be equally successful...

Anyone in New England/area considering GK should definitely consult w/Dr Noren--he was very gracious in his time and numerous e-mails and he has a wealth of experiene and knowledge!! and I personally liked him!!!

Best wishes to all!!   Mary from MA

[Sheryl]

Mary - isn't the decision making process the PITS!!  My husband had surgery for a meningioma (another benign type of brain tumor) in May of 2004.  We found out last November, 2006, that it had started to regrow.  For the past ten months we have gone to numerous consults in Florida and Massachusetts.  Another surgery was the first recommendation but that's not an option for hubby.  He finally decided on CyberKnife at the Beth Israel and is all set for October first.  The set up and mask making was supposed to be this Monday, 9/24 but because of an emergency, they had to move it up to Thursday, 9/27.  Luckily the treatment date has stayed the same.  Hopefully soon the constant 24/7 worrying and thinking about this will lessen. 

BTW - I'm pretty sure with BC-BS that all states are reciprocal as long as the physician/facility is a BC-BS provider.  We have absolutely no problem using our Mass BC-BS in Florida.
Sheryl

[krbonner]

Wow, already two weeks into the FSR?  I know you had a tough time making this decision, but it sounds like you made the right one for you.  And that's all that matters.

How are you feeling with 10 treatments behind you now?

Katie

[MLB57]

Hi Katie--I missed you at the brunch but am certainly glad you had a nice get-away with your family!!!

Loeffler at 10 am after my treatment so I don't get back to work until 1:30, so each week I'm losing (unpaI'm feeling okay. Been getting up at 4:30 to catch 5:50 train to Boston--then I walk from North Station to Mass Gen (nice 10 min walk) to my treatment for 7:40 (takes only 15 mins) then back to the train and I get back to Leominster for 10:15 and hop in my car and drive to work in Worc. Every Wed I have to see my Dr id) approx 13 hrs of work--but that's okay as it is a small price to pay to stop my pesky tumor!!! ... 4 more wks of treatment to go!!!  One possible side-effect is fatigue--hasn't happened (yet?)..  and a possibility of the tumor swelling and placing pressure on my already weakened facial nerve--I'm kinda worried about that as my face has tightened up at corner of mouth and right eye muscles are sore and tighter--Dr Leoffler isn't concerned yet (too soon) but he can put me on steroids and stop treatment for week or so if necessary (he said he only had one patient who needed this detour in treatment plan--so we'll see.)
Actaully I've seen so many people in a more desperate situation than I am (cancers with chemo drip  pouches who come in Mon thr Fri and have radiation, bald (mostly women) from either the chemo and/or radiation, etc.) I am thankful I only have a benign tumor.. Started to make freinds with a couple of women and their husbands who have cancer.. It certainly will be an experience i will never forget!!

How are you doing??  Have you had your year MRI yet??  I'm sure it will be clean as a whistle... I hope to see you in November at our brunch!! You'll get to meet the cheeky bloke...


Take care and happy Fall!!   Regards, Mary 

[MLB57]

 Hi Katie---sorry about that messed-up reply--shoulda checked it before posting it!! I like to fool around with the colors and I screwed my message up--I think you can read betweenthe lines--treatments 7:40 am each day then every wed I see Dr Loeffler at 10 am so I'm losing appprox 13 hrs of unpaid time fromwork... But I will be okay financially as it's only for 6 wks...

I'll write again as treatments along to update ya!!  Regards, Mary 

[MLB57]

Hi Sheryl--It was difficult to make a decision--I couldn't believe it at first as I was told that darned tumor was gone (OR reports from surgeons said somethng like "total resection to healthy nerve") but it happens so now I just hope I've made the right decision.. Outcome will determine that.. I wish I had that crystal ball at times like this!!!  But nothing is a gurantee and I am thankful that surgery wasn't my only option.

 I'm sure your husband will be in EXCELLENT hands.. 

Best regards, Mary from MA

[krbonner]

How are you doing??  Have you had your year MRI yet??  I'm sure it will be clean as a whistle... I hope to see you in November at our brunch!! You'll get to meet the cheeky bloke...

I had my MRI back in August, and it was pure and clean!  McKenna doesn't want to see me for 2 years now (unless something changes).  That makes me a little nervous, but he claimed there's simply nothing left on the MRI to start growing again. 

Glad to hear you're feeling good!  See you in Nov!

Katie

[jimmy r]

Mary

I am going to start treatment at MGH in a few weeks. I will be traveling from Maine. I could have the treatmant 5 minutes from my house but i decided to go with Dr Loeffler and his more experienced team.  I have had 2 surgeries and know that my facial nerve is wrapped around the tumor.

I understand that it only takes 15 minutes for the radiation but how long past your scheduled appointment  do you usually have to wait? I will be riding the bus and want to schedule accordingly.

Jimmy

[MLB57]

Hi Jimmy--I requested and am scheduled a 7:40 AM app't every morning and I have never waited more than 20 minutes--they are pretty quick and efficient and I believe my occasional wait is due to the person scheduled before me probably being late... However the advantage I have is having an early appointment --so if you have one later in the day and if other people are late, well you know that domino effect!!  I  had a 9:45 AM app't two weeks before treatment started to make a mouthpiece and have a Cat scan w/contrast--that all took maybe 45 mins... The first treatment was Sept 10 and it had to be at noontime (as several techs were there for the first set-up, etc.) and that lasted only maybe a half hr to 45 mins.  Every Wednesday we all have to see Dr Loeffler and the earliest he can see me is 10 AM, so every Wednesday after my 7:40 AM treatment I wander around until 9:50 and then go to the waiting room and then he sees me pretty much right at 10 AM--and the appointment is very quick (not much to diiscuss in my case yet anyway) and lasts maybe 10 mins or 15 tops...so you may find you may be at MassGen most all day Wednesday...depending upon treatment and app't times... 

If I can shed any more light on anything, please ask... I am into my third week and so far so good... You'll have to sign a sheet listing possible side-effects and one is fatigue... and mine (hand-written)  listed possible further weakening of facial nerve...possibility of tumor turning malignant.. You know they have to cover themselves--Dr Loeffler said he's never had a patient who experienced permanent further weakening of facial nerve with the FSR--He did have one lady who they stopped radiation for one week and put her on steroids and then resumed treatment and she is okay. I am going into Mass Gen every day for 6 weeks to have the FSR to kill the tumor AND protect my facial nerve. Of course there are no guarantees but one surgery was enough for me  even tho mine was uneventful!!! So I'll take my chances...

Take care!! Sincerely, Mary from  MA

[MLB57]

Hi Katie--So glad your MRI was clean!! My first year MRI had a spot and they didn't know if it was scar tissue (that's what they thought as both UMassMed surgeons reports said "total resection to healthy nerve"...) but each year MRI it appeared the spot was larger until June of 2006 when it was definite the thing was growing-- when I saw Dr Barker this year he told me flat out that there had been residual tumor all along (he viewed all my MRIs) and that's why it's growing. SO I am so tickled for you that the MRI is TOTALLY Clean!! That is absolutely great!! You looked great the first time I saw you only weeks after surgery!!  So Barker really know what he's doing!!!  You'll want to have the follow-up MRIs as Barker requests, even if for piece of mind!!!

Yes, I will look forward to seeing you again in Nov at Maxwell's--Take care--Sincerely, Mary

[jimmy r]

Thanks for he info Mary. By the way I had surgery with Dr Barker 3 months ago but he could only get half the tumor out because of the facial nerve. I am waiting to get scheduled ( waiting for nancy to call). I am hoping to start the week of 10/8 so maybe i will see you although i will probably go for a late treatment so i can work half a day in maine. keep me posted.

[MLB57]

Hi Jimmy--Best wishes with your treatment!--and keep me posted--I am at Mass Gen area every Wed (after my 10 am w/Dr Loeffler) until approx 11 am so if you're around it'd be nice to meet up with you!!!   Regards, Mary from MA

Ps--Dr Barker did Katie's surgery as well!!