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Re: Gammaknife Managed....check!
I hope you are having a nice restful weekend.
Take care. |
Re: Gammaknife Managed....check!
Denise, So happy for you that you have a Dr. that gets right onto things. Seems it wasn't all that long ago that you posted you had brain mets, and then here you are getting them treated. Way to go. Your picture inspires. Thanks for showing us that you can hit a bump, but then be right back into battle beating the snot out of cancer. Hope/pray your procedure was successful!
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Re: Gammaknife Managed....check!
When I had gamma knife the screws went in at each side of my forehead about an inch below my hairline in front. Of course the back two are placed in the solid bony area behind the top of the ears.
The person who numbed my scalp was a woman neurosurgery resident. She was very adept with the needle and hitting the right spot. The back areas of my scalp were numb for quite a while - maybe a couple of months to fully wear off. I did not feel the screws, only the needle when she began the numbing - sort of like when the dentist is starting to numb your mouth. My front places where the screws went left me with little scabs less than 1/4" in diameter. They barely bled when the headframe was removed. For cyberknife you must have a mesh "mask" made that will fit extremely tightly over your face and bolt to the table so that there is NO movement. The Gamma Knife is accurate to 1mm of the target area, so they can't have the patient able to move the head at all. Just a few details from a patient's viewpoint. |
Re: Gammaknife Managed....check!
BTW - your hair looks adorable.
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Re: Gammaknife Managed....check!
Your picture reminded me of the girl 'Valarie' in the movie 'Pure luck'...
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Re: Gammaknife Managed....check!
Denise,
I hope you're feeling better now. I'm so glad you were treated promptly. Brain mets fully resolved.....check! I love your wit, spunk, and drive. God bless you. |
Re: Gammaknife Managed....check!
Many many blessings to you Denise!
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Re: Gammaknife Managed....check!
Steph thanks for the post of your personal experience.
Your descriptions should help others be realistic rather than imagining the worst in trying to find the description of the screw/screw placement I googled several patient's perceptions of what they had been through and they were quite "imaginative" it seemed. ie, that the screw went through the skull rather than into it. In any case, there is no substitution for personal experience..Steph you have been there and done that and sharing your experience in a way others can quickly access it on this site is priceless. Perhaps a thread should be started regarding: please describe your personal perceptions and experiences of the following procedures: first dose of herceptin first few doses of anthracycline first few doses of taxane first few doses of bisphosphonate first few doses of navelbine first few doss of vinorelbine, and other drugs commonly given radiation therapy whole breast...describe how felt initially, two weeks into it, fourweeks into it, at the end, one month later APBI upon iniiation, during it , at the end of it and one month later SRS brain mets ditto WBR brain mets ditto embolization/spheres for liver mets SRS of mets other than brain (Esther had liver I think) lumbar puncture IT herceptin Then those facing these procedures could have instant information Those with nursing backgrounds, eg Alaka Angel etc could state that --their descriptions might be less "imaginative" as they may have more background knowledge about the whats and where fors Fear of the unknown and loss of control seem to be the common theme and posting a webpage with a medical description of the procedure, what to look out for, why and how it is done (usually on nih, nci website) would be well supplemented by personal experiences Many of you have beem thrpigh so much Making it easy for those who anxious about what is upcoming sould be leaving a valuable legacy Thanks again, Steph oops I forgot to list bone marrow aspiration |
Re: Gammaknife Managed....check!
Yikes!
I certainly hope I didn't scare anyone with my description! The video link Jackie posted on the other thread shows exactly what to expect. It's the same one they showed me when they scheduled the procedure. And it's not scary at all!! Certainly not as scary as the phone call where the oncologist announces that you HAVE lesions on your brain. That, my friends is the scariest thing I've ever heard in my life. Frankly, I'm hoping this procedure saved my life...so what's a little discomfort for a few hours. The whole thing was easier than chemo (even Herceptin), and radiation! And...I don't have brain mets anymore! Sorry if my description sounded scary...blame it on the drugs...or the swelling I guess. I was shooting for humor...and trying to put people at ease...guess that didn't come off so well. Trust me when I say...it was virtually discomfort free...and 100% worth it. Denise |
Re: Gammaknife Managed....check!
I am looking forward to an "all clear" report Denise!!
all the best caya |
Re: Gammaknife Managed....check!
Denise;
Rest, relax and recover!! I too am looking forward to hearing an all clear from you. All the very best and many thanks to you and Steph for sharing your experiences. Cathy |
Re: Gammaknife Managed....check!
Denise -
Your photo is quite reassuring, since you say you have just had the headframe removed. You are NOT doubled over in pain and do not have blood gushing down your face. And the smile looks genuine. LANI - glad you appreciate my experience. Hope others will see it. The thing that goes on our head is called a HEAD FRAME - this is what is then attached to the HELMET that is already in place on the table in the machine. The HELMET is like a big bowl with little holes in it where the beams come through to the area of treatment. The head frame is VERY light weight (titanium, I think?), just a little awkward for trying to eat something (best to drink a shake through a straw), or lie back while waiting to go in the Gamma Knife machine. Being so light weight also means that the screws do not have to go on very tightly. Just enough to keep the frame in place while you wait and to attach in the helmet. The pressure of the screws is a delicate procedure as the technicians would not want to cause a hairline fracture by too many turns of the screwdriver. I did not have a headache and was out merrily driving around the next day. Like Denise said - it is hearing the news that our brain has been invaded by the cancer which is the worst part. Next is the consults to see what are the possible treatments, and last nerve wracking is the MRI after the head frame is on and they are planning the treatment. That MRI will show if there are any new spots to treat. A big sigh of relief when they told me there was nothing new. |
Re: Gammaknife Managed....check!
More on the HEAD FRAME:
This is exactly how mine looked: http://www.gammaknife-memphis.com/images/head_frame.jpg I had posted a pic of me with mine on, but the post is still here and photo is not. Just where the "pins" attach to the forehead is easy to see, and there are two more in the back. The stabilizers on the side do not have pins/screws. This is connected to the helmet, and the machine will make any positional adjustments itself. The patient is unable to move his head or neck on his own once in the machine. |
Re: Gammaknife Managed....check!
I appreciate getting this information.
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Re: Gammaknife Managed....check!
Glad this is over for you, Denise.
Amelia |
Re: Gammaknife Managed....check!
Denise,
You continue to amaze me. I am sure your students just adore you. Your full of personality and you effect many people in such a positive way. Your special! |
Re: Gammaknife Managed....check!
Steph--thanks so much for your detailed descriptions of your experience
I do think it would be good to have a section on different procedures-- MRI CT Gamma Knife Cyberknife lumbar puncture bone marrow aspirate first few infusions of different chemos so people have an idea of what they are in for (their imagination of what it might be like is probably worse than the reality) If it all in one place, people will not have to use the search engine (which it seems people hate to do) and others with different experiences can easily chime in and add to the ongoing list of experiences Anyone else think this might be useful? Again, each thread could start with the website info on nih/nci about the procedure Thanks again Steph |
Re: Gammaknife Managed....check!
I'm glad to hear you're past this hurdle, Denise.
I think Lani's idea is a great one. Would it be hard to set up a new forum just for treatment details? Someone would have to put together a thread for each procedure, with an intro message of the basic information. People do like to see the official information (NCI/NIH as Lani suggested) but then it always seems we are MORE interested in hearing personal experiences. We could help gather the opening info, if there's someone who could set up the forum. As long as we have a good variety of experience, the stories from those who had harder times will be balanced out by those who sailed thru, so I don't think it would alarm people. As Lani said, for most of us our imagined version is worse than the reality turns out to be. Plus, readers will see that the reason the "official" information sometimes seems so vague as to be no information at all is because each person reacts or responds differently -- so it's hard to say what the experience will be like for any one person. In addition to describing the procedure and the personal experience of same, people could add helpful hints -- things that made it easier or helped with side effects (or didn't help), etc. And for the things that are hard to visualize (head frames and helmets!), photos are great. Debbie Laxague |
Re: Gammaknife Managed....check!
Denise, I'm so glad it all went well for you and you are doing fine. Have you been back to teach since this last bump in the road? If so I'm so glad you are keeping all of your eggs in a row.
Gods blessings Lil Girlfriend. I always keep you in my prayers. |
Re: Gammaknife Managed....check!
Denise...you not only amaze me but inspire me more than you will ever know! You photo looks like you just came back from a brisk walk in the park....
may you heal quickly and feel better each day...you are an inspiration of courage and strength to each and every one of us. |
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