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4lindsay
Regular
Joined: 12 Apr 2008
Posts: 31
Location: Seattle
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 Posted: Tue Mar 17, 2009 12:43 pm Post subject: Re: silent |
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Hi Tammy!
I was really glad to log in here today and see you had posted...I was just thinking of you last night and wondered how you were doing. Do you know if they plan to do any surgery first; because typically they don't use gamma knife on a lesion larger than 4cm. Maybe they came out with some new technology recently, who knows?
Your saying is so true:
You never know how strong you are
Until being strong is the only choice you have
Take care and keep hanging in there!
Dianne
Mom of 23 yr. old Lindsay, Dx 2/8/08 oligoastrocytoma gr. 2, first surgery (biopsy) 2/9/08, 2nd surgery (total resection) 12/4/08 |
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Tammy
Senior User
Joined: 27 Nov 2007
Posts: 115
Location: New Brunswick, Canada
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| Posted: Tue Mar 17, 2009 1:46 pm Post subject: Silent |
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Hi Diane, how are you and Lindsay making out these days? I have no idea what size they start and stop at. My pharmacist is the one who is setting everything up. Her husband was the doctor treating me when I had problems with my kidneys, so he has a few connections. I made a mistake about Québec having the only gamma knife. Québec is second to Manitoba and Toronto now has one.
The doctor is interested in my case because of the size of my tumor.
You never know how strong
you are until being strong
is the only choice you have.
Take care of yourself,,,,Tam xx  |
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4lindsay
Regular
Joined: 12 Apr 2008
Posts: 31
Location: Seattle
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| Posted: Tue Mar 17, 2009 2:49 pm Post subject: Re: silent |
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Tammy,
We're doing well. Lindsay is starting college on March 30th and is both excited and nervous. It's going to be a lot of hard work after having 2 brain surgeries but if anyone can do it, she can! Her next MRI is Apr. 10th so we're beginning to get those little anxiety twitters already. This will be the first one since her Dec. 4th surgery.
Update us when you have more info on what's next for you.
Take care!
Dianne |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5617
Location: Tennessee
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| Posted: Wed Mar 18, 2009 6:57 am Post subject: Re: silent |
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Tam, don't be scared of the gamma knife. The name is much worse than the treatment itself. It is non invasive and much better than whole brain radiation. It is one of several stereotactic radiation treatments available. It uses beams of gamma rays pointing from several directions at the tumor. Since they are able to use lower levels of radiation, the only area that gets the full dosage is where the beams cross.... the tumor.
I know this explanation will not take away all of your anxieties; those are normal. I just hope it can give you some peace.
Let me know how things go.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54 |
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Tammy
Senior User
Joined: 27 Nov 2007
Posts: 115
Location: New Brunswick, Canada
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| Posted: Mon Mar 30, 2009 9:39 am Post subject: Silent |
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Hey everyone =) Hope all is well. I am so mixed up now. and I am here to vent, let loose or complain which ever it is I am doing it..lol. I really do not know where to put my head. The oncologist I have now wants to watch and wait and only have another mri done in a years time even though there is a slight growth, it's now measuring 7.0 x 5.2 x 6.4. My Pharmacist and her husband know some doctors in Quebec, they both are friends and I know they want nothing but the best for me. My friend's hubby is a Urologist so I felt he would not guide me into the wrong path as he him self has dealt with a brain tumour, not the same as mine but I see it as a brain tumor is a brain tumor. He mentioned 2 doctors he knew personally, I have mentioned this to my family doctor. My family doctor has not heard of either of them of them as they are out of our province but he took the time and looked up their contact information for me. *yes I do have a great family doctor* after debating on what to do I finally made the decision to email both doctors. I received and email already from one and this is his response:
Hello Tammy,
I don't know if you got a response from Dr Fortin already, but anyhow, here is my opinion. Here in Sherbrooke, we favor surgical resection for glioma, even partial resection,whenever possible. After, if the tumor is really low grade and non progressive, observation can be an option, but I understand that yours has grown slightly, so it should probably be treated. For oligodendrogliomas, it is important to know the 1p 19q codeletion status, because that can confer sensitivity to chemotherapy, which would be the favored option. The standard chemotherapy drug is Temozolomide (Temodal), which is taken orally.
It is difficult to give a reasonable opinion without having seen the MR images. If you wish, you could send us a CD containing all your MRIs, and the pathology reports. That would help us give you a second opinion. We have also seen some patients even from New Brunswick in consultation, so that could also be arranged if that's what you want.
David Mathieu MD FRCS(C)
Neurosurgery/Neuro-oncology
Medical director, Gamma knife radiosurgery
Centre Hospitalier Universitaire de Sherbrooke
Associate Professor
Department of Surgery, Division of Neurosurgery
Department of Nuclear Medicine and Radiobiology
Faculty of Medicine and Health Sciences
University of Sherbrooke
Qc, Canada
If anyone knows anything about this place or doctor I would appreciate your info =). I know no-one can make up my mind or my decision as my parents and hubby has said, it's just I am REALLY having trouble deciding on where or what to do, I with I would get a sign or something..
Anyhow thanks for the this place Jim, I really do need it allot of times, and Thank you to all who has been reading or posting here as well. It helps having people like me, even if it is inside this little box. I treasure it,, =)
Well I really should go and rest, not up to par since last night..look like a goofball wearing shades in the house, dang headache...Thank you for your time xx.
~Tam~
You never know how strong you are until being strong it the only thing you can be. |
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4lindsay
Regular
Joined: 12 Apr 2008
Posts: 31
Location: Seattle
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| Posted: Tue Apr 07, 2009 1:59 pm Post subject: CD of MRI's |
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Hi Tammy~ I was wondering if you had a chance to look at the CD containing your MRI's? It's a little confusing to figure out how to open them and manuever around but there should be a help key also. Curious...
Take care!
Dianne |
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Mama 2 2
Senior User
Joined: 29 Nov 2007
Posts: 107
Location: Sunshine Coast, BC
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| Posted: Wed Apr 15, 2009 1:30 pm Post subject: Re: silent |
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Hey Tam,
Sorry to hear about all the confusion! I hope things are starting to get a bit better for you?? Waiting is so hard, and though it's stressfull to have the MRI's, I always like to have them so we at least can know where things stand - I would have a hard time waiting a year - unless the tumour had been stable for a long time, and it doesn't sound like this is the case for you.
I hope you are well and getting some beautiful east coast sunshine now! Things are a bit sketchy here, but I'll post about that on my own thread . . . keeping the spirits up though!
Let us know how you are doing my friend,
~C~
_________________
Our Story: http://www.cancerforums.net/about7982.html
www.caringbridge.org/visit/eliasminatsis |
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Tammy
Senior User
Joined: 27 Nov 2007
Posts: 115
Location: New Brunswick, Canada
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| Posted: Wed May 20, 2009 7:21 am Post subject: Silent |
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WOW...I have been reading other posts and, I didn't realize I have not posted in some time. I missed some really important things..I am sorry I missed the posts
HI TO ALL MY FRIENDS!
Reading your posts, some are great and some are so sad...I want you to know that even if I am not posting it does not mean I am not thinking of you ALL!!!!!!
I had a chance to see the cd of my images and like Jim (Brain man) said it is pretty easy to read, I popped the cd in and the images can right up. Mind you it is very difficult to look at knowing that it's your brain that has that large blob..... It did scare me when I seen how large it really was. It takes most of the right lobe and it's growing into the left lobe, I cried when I did see that. After sending it away for a second opinion, I received feedback from the doctors right away, I am going in the next few weeks to discuss my surgery and treatment. Since I am going out of province there is some talk about who is going to pay for surgery, but the doctor who called me said not to worry about anything and he will help me anyhow I am going to Quebec... There was a chance that if I was treated right from the start that my tumor would of not grown...The doctor does suggests surgery and treatment. He has told ne that he can not take it all out BUT he can get most of it.... That's a good thing right??. He has just came back from Japan from meetings and the feel with a oligo the best it surgery...God, I hope with all my heart that I am doing the right thing.
Lindsey N Dianne, Hope all is well with you both thinking of you often,,,,Lins..~you better be doing well in university!!!! *BIG SMILES*
Cheals,,,hugz..There is a litle note in your thread for you, hope it's ok......Thanks for all the sunshine, its sure is uplifting, I am hoping all is well with you and I think of you often, Please take care of yourself. That's goes for everyone here..... xx *HUGZ*
Jim I hope all is well with you...xx, You are in my thoughts....
A house is made of walls and beams;
a home is built with love and dreams
Tam~ |
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4lindsay
Regular
Joined: 12 Apr 2008
Posts: 31
Location: Seattle
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| Posted: Wed May 20, 2009 9:47 am Post subject: Re: silent |
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Hi Tammy ~ I'm so glad you sent the CD away for a second opinion! I agree, if the tumor had been resected as much as possible while it was smaller, it would be more manageable. No promises that it wouldn't have re-grown but it would have been smaller and easier to deal with.
Thanks for thinking of Lindsay. She's doing very well in college; pulling 100% in her classes and is very relieved to know that her brain still works great! Getting ready for a trip to Europe in 6 weeks so we're getting excited about that.
Please keep us updated when you go for surgery so we can be praying for you...prayer works!
Take care Tammy!
Dianne |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5617
Location: Tennessee
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Tammy
Senior User
Joined: 27 Nov 2007
Posts: 115
Location: New Brunswick, Canada
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| Posted: Fri May 29, 2009 9:13 am Post subject: Silent |
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Hello Friends...
Hope everything is going well for you all. I want to share my good news I have received!  ...I went for the second opinion and I received good news...
The doctor I went to see told me he can removed 70% of my tumor with only a 8% risk. I was so happy to hear that. He feels by removing most of the tumor it will benefit me!! Thank God someone finally on my side! He said by removing most of the tumor there will not be as much cancer to treat, and that my chances will be much better!!  On the other hand...he also showed me what he is concerned about...There is a swelling in the center of the tumor and that questions him...so I am scheduled for another mri in 2 weeks to see if there is more enhancement in the T1 pictures. I think I have that correct....he talked about T1 and T2. The doctor also informed me that my tumor in not shaped like a egg as I was told before and it is not well defined - it is like a splat and scattered very deep in my brain. Another thing, I can not have the gamma knife as my tumor is to large, but with all that said....I have more faith now and I certainly believe in second opinions now!! I am so thankful for the woman who contacted my mom about this doctor and for my friends getting me through to see him, Also for everyone who pushed me toward that second opinion!!!!....There is still some faith...I cross my fingers that my next mri does not show more enhancement...but if so ...I am still so grateful that there is a doctor who can help me have a better chance!
For everyone who reads this,,,there are chances for fighting this nasty, sometimes you have to go the extra distance and at times you can get lucky,,,never give up hope...Easy to say I know, *actually I can't believe I am saying it*.I have my good days and today is a good day for me! I still get down and I still cry, I cried last night, I am still scared, trying to live knowing what I have in my head...But now I do have more faith in fighting this nasty! I give so much Thanks to and for doctors who go the extra distance...
Take care my friends, I look forward to hearing other good stories as well...I hold my fingers crossed not only for me but for you as well...
You only know how strong you are, until being strong is all you know!!
~Tam~ xx |
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Trigggl
Regular
Joined: 20 Dec 2004
Posts: 32
Location: LR, Ar
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| Posted: Sat May 30, 2009 11:16 am Post subject: Re: silent |
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Tammy,
I wish I had seen your story a lot sooner (like a year). I'm a little ticked (angry) on your behalf. Having a tumor that large and effecting you that much, I'm very surprised that it wasn't treated aggressively and immediately. I'm not a doctor, but I would have never advised you to wait. They should have at least taken enough out to relieve the pressure that was causing problems and then to quickly get you on a treatment.
I'm very glad to hear that you will be able to get up to 70% removed. Then, hopefully they'll give you the best treatment for your situation. I was on PCV.
http://www.google.com/search?hl=en&q=pcv+oligodendroglioma
After some Google research, I just found a Wiki page.
http://en.wikipedia.org/wiki/Oligodendroglioma
One of the things that it says:
"Nevertheless, a retrospective study on 1054 patients with anaplastic oligodendroglioma, presented during the 2009 ASCO Annual Meeting, suggests that PCV therapy may be superior in efficacy to the newer temozolomide therapy. Median time to progression for patients with 1p19q co-deletion was longer following PCV alone (7.6 years) than with temozolomide alone (3.3 years); median overall survival was also longer with PCV treatment versus temozolomide treatment (not reached, vs. 7.1 years)."
Me:
It appears that Temador is better for short term, but PCV for long term. The key word is "appears". These are things you can discuss with the man/woman with the degree and then you can always make your own decision. Either way, I think it's best that you get on something and soon.
I can't believe they had you waiting a year between MRIs! I've been stable for 4 years and I'm still getting one every 6 months. Don't let the doctors there make you wait for anything. You shouldn't have to endure symptoms because THEY want to wait to see if it will go away on its own.
Give them h-e-'double hockey sticks'. (politely, of course)
_________________
Greg --> 5 years and counting
http://trigggl.wave.prohosting.com/
http://cancerforums.net/viewtopic.php?t=365&start=0&postdays=0&postorder=asc&highlight= |
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Tammy
Senior User
Joined: 27 Nov 2007
Posts: 115
Location: New Brunswick, Canada
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| Posted: Wed Jun 03, 2009 10:45 am Post subject: Silent |
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LOL Greg,
I know I should of went for a second opinion alot earlier, I am not a well out spoken person....But I am happy now that I have went. My next mri june9th should show if it is still swelling. I have 2 types of doctor teams, one team was a really die hard *watch and wait to see what happens* and the other was a *get rid of what we can so there is less to treat* I am from a small town so ther were not many options for me. I am now getting in control of my situation and learning to be more aggressive towards my nasty problem. I am normally the silent type but changing slowly. I do beleive I might be in a depression at the moment...I am very sensitive, happy at one moment sad the next and have no feel for the need to eat, usually I can eat but not hungry at all, lost my energy as well. My new doctor is showing me he is a *take the action he is able to* doc and I am please for that, just hope its not to late for me having a longer life span. But time will tell..Hope you are doing well, thank you for your reply and I look forward to more.
You are all in my thoughts (my online family) LOL...
_________________
~Tam-xx~
Life shouldn't be about you waiting for that nasty storm to pass, it should be all about you learning how your going to dance in the rain..
Diagnosed with an Oligodendroglioma Gr 2, in 2007. |
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Trigggl
Regular
Joined: 20 Dec 2004
Posts: 32
Location: LR, Ar
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Tammy
Senior User
Joined: 27 Nov 2007
Posts: 115
Location: New Brunswick, Canada
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| Posted: Tue Aug 04, 2009 5:14 pm Post subject: Silent |
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Hi all,
I am very tired lately so not here very much, so this is a quick note to say hi to you all and to let you know even tho I am not here very often, I have not forgotten about any of you. The new specialist I have seen will be working along with my surgeon here to remove up to 70%. Thats great news for me. I am nervous for the being awake for it but if thats what has to be done so be it right?! When I know more I will be back, Thank you for all the wishes and prayers, I beleive it plays a great role in people suffering. I am struggling with depression but no matter what I will conqeur it =) Take care everyone and thank you for the tip Trig xx..
Thinking of you all always xx
Tam~
_________________
~Tam-xx~
Life shouldn't be about you waiting for that nasty storm to pass, it should be all about you learning how your going to dance in the rain..
Diagnosed with an Oligodendroglioma Gr 2, in 2007. |
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