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-   -   Brain MRI for possible brain mets (https://her2support.org/vbulletin/showthread.php?t=28389)

lu ann 06-07-2007 03:13 AM

Brain MRI for possible brain mets
 
I had an MRI of my cervical spine May 30th to find the origin of the numbness and tingling in my left hand. A 4mm spot was seen in my cerebellum. I had an MRI of my brain Tues., June 5th and will get the result Fri., morning from my rad. onc. My last brain MRI was last fall with negative results for brain mets.

I had an appt. Mon., June 4th with the surgeon who put the catheter in my left pleural area for home drainage. The ex-ray prior to the appt. showed more air in my lung, but I still have allot of fluid surrounding it. He upped the home procedure(husband does this for me) to 3x per week instead of 2x. His goal is to have room for the lung to re-inflate and lessen the area for fluid to build up.

My youngest daughter was admitted to the hospital yesterday with possible mononucleosis. The test came back negative along with several other tests. She also had an ultrasound of her splien, which is enlarged. I will find out more today.

It just goes to show things don't wait for us to be all better before they happen to the rest of the world.

Please pray for us.
Love and Blessings, Lu Ann

Mary Jo 06-07-2007 03:59 AM

Sending love and prayers your way Luann.

Mary Jo

Caroline UK 06-07-2007 03:39 PM

Lu Ann, this must be a tense time for you. The waiting is hard, and you have the added worry over your daughter too. I'll be thinking of you tomorrow morning, please let us know how things are when you are able.

Love
Caroline

Lolly 06-07-2007 04:52 PM

Lu Ann, I'll be thinking of you and your daughter and sending prayers your way.
<3 Lolly

chrisy 06-07-2007 05:12 PM

Well, LuAnn, yes I guess lifes little speed bumps wait for no man. Or is it no scan?

I haven't been following closely, but it sounds like although you are still working on it, that the situation with your lungs is improving? More air would seem to be a good thing to me!

The spot seen on your cerebellum should be quite treatable. I'll be praying with you that the brain MRI turns up nothing new.

Much love
chris

Becky 06-07-2007 05:54 PM

I'll be thinking of you and your daughter. Best wishes for both of you.

RhondaH 06-07-2007 06:00 PM

Lu Ann...
 
Done. Take care and God bless. BIG huggs.

Rhonda

rinaina 06-07-2007 06:34 PM

Sending lots of prayers your way for both you and your daughter.

juanita 06-07-2007 06:37 PM

How long has your daughter been sick? My son had mono last fall. First test was neg, but the second about 4 days later was pos. Hope that everything works out okay.

Carolyns 06-07-2007 06:48 PM

lu ann,

Sending prayers your way.

Love, Hope, and Peace,

Carolyn

Lala 06-07-2007 08:58 PM

LuAnn

I am thinking of you and you are in my prayers for strength and full recovery.
I too had mets in the cerebellum. After Stereotactic Radiosurgery the mets in the brain are gone. There is Hope! Hang in there!

Hugs,

lu ann 06-07-2007 10:01 PM

Julie has been complaining off and on for sometime now about different aches and pains. I make an appt. for the doc. and she finds something else to do and I end up canceling it. I guess she felt so horrible this time so she cooperated. I've been feeling achie in my lower extremeties since My surgery May 9th. I thought it was pulled muscles in my legs causing a cramping feeling. This reocurrance hasn't been so bad for me until I get these bouts of pain. I could not go see my daughter in the hospital today because I could not walk from the parking lot to her room in the hospital. If I was a patient I could of had a volunteer push me around. I just can't imagine what it would be like being disabled and dependant on others to help with mobility. I can walk, but not without pain and it is unbearable. I will post my results when I get home tomorrow.

Love and Blessings, Lu Ann

rentrac 06-08-2007 05:06 PM

brain mets support
 
Dear LuAnn,
Hang in there regardless of the results of the MRI. I was very suprised when I suddenly had to face brain mets in mid April - one in the right cerebellum and a small one in the left temporal lobe. Gamma Knife turned out to be an amazing form of radiation that nuked them to the point they are now half the size they were and still shrinking. The hardest part has been the side effects from the Decadron I've had to take to keep swelling and inflammation down. I sure hope your MRI is clear, but try not to panic if it isn't. My prayers are with you as you face this.
Rentrac

lu ann 06-09-2007 01:58 AM

Bad news
 
I will be starting whole brain radiation June 25th. There are mets close to my optic nerve and in my cerebellum. I'm not looking forward to this treatment, but the rad. onc. thinks this is the best route to go, to clean up any unseen mets. If I were to have a treatment to just focus on the mets seen, I would not be able to have WBRT in the future, if needed. If there is anyone out there who have experienced WBRT, please tell me your long term side effects. I've gone on line and it appears that I am in for some very severe brain damage.

Thanks, Lu Ann

rentrac 06-09-2007 04:26 AM

re: brain mets
 
Dear Lu Ann,
Have you gotten a second opinion from a different radiation oncologiy group? I don't know how many metastases you have, but Gamma Knife may be an option. It is VERY precisely focused on the mets (I could have done the macarena while doing it,and wouldn't have been able to move a hair on my head!), and its use on multiple metastases is growing. The treatment is coordinated by a team made up of neurosurgeon, physicist, radiation oncologist, etc. My head was placed in a frame (with the help of Versed) that made me look like I had stuck it in a carriage lamp. After that, I was wide awake, felt absolutely NO PAIN, and the team would use that frame to position my head in a large metal hub with lots of engineered windows for focusing the radiation. Everything was completed on the same day, in time for lunch. Considering the damage you fear from WBR, it seems like it would be worthwhile to see if you are a candidate. After Gamma Knife, I'm having MRIs every 6 weeks to check for any other metastases that aren't visible. I know of some patients that have been doing this for 10 years or more... one or a few tumors at a time. I call it the "Whack-a-Mole" phase of treatment.
I had Cyberknife for a mediastinal met, and chose to take the 7 hour drive to Baltimore's Sinai Hospital for the treatment; there were a couple of sites a bit closer, but I have relatives there I could stay with. It was definitely worth the drives to get the treatment. Stereotactic radiation - both cyber and gamma knife, has been easier than any other treatment I've had.

Why don't you try Googling Gamma Knife and read up on it? I'm a firm believer in second opinions.
warm wishes and hugs your way,
Rentrac

Susan2 06-09-2007 08:29 AM

I had WBR a year ago and I had the same concerns as you. However, it was at a lower daily dose over a longer period of time with higher doses targeting the known spots. the only side effect that I had was hair loss. If you have any questions, please feel free to send me a private message.

Best of everything,
Susan

Jade 06-09-2007 09:07 AM

Dear Rentrac

There is nothing funny about any of this, however, you made me laugh with your 'whack a mole' comment. The visual it created! Perhaps the procedure should be renamed 'whackamet".
From my heart, I wish you and Lu Ann met-free, peaceful, happy days.
Love,
Jade

Mary Anne in TX 06-09-2007 09:57 AM

Lu Ann, God bless your husband for being your "at home clinic". I do so agree with you that life just keeps on keeping on no matter what's going on with us. Sometimes I think it does so to remind me to keep on keeping on with life too! I hope the report for you and your daughter is sooooooo good when it comes. Thank you for sharing your update with us so we know what is happening with you. ma

lu ann 06-09-2007 10:29 AM

I've gone on the net and read that the side effects are just horrible. I don't want to risk having brain damage, dementia or blindness. The doc did say that my hair would grow back, but that is not what happened to several people on this board. It's not just the vanity involved, but the comfort. We have cold winters and I am always cold. It's in the 80's today and I have on a sweater.

If there are others out there who had whole brain rad. please tell me your experience.

I will be contacting Cancer Treatment Centers, Monday for a second opinion. I owe this to myself.

Thanks to all
Lu Ann

chrisy 06-09-2007 11:15 AM

Lu Ann - Talk to Christine
 
Lu Ann - have you talked to Christine Druther (Joe's wife and founder of this site?) She has had both targeted and WBR and can certainly talk to you about her experience. Please contact her, I know she would love to help


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