Brain MRI for possible brain mets

[lu ann]

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]

Sending love and prayers your way Luann.

Mary Jo

[Caroline UK]

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]

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

[chrisy]

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]

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

[RhondaH]

Done. Take care and God bless. BIG huggs.

Rhonda

[rinaina]

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

[juanita]

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]

lu ann,

Sending prayers your way.

Love, Hope, and Peace,

Carolyn

[Lala]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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

[pattyz]

Lu ann,

I was and have remained of the same opinion for myself: No WBR!

With my second dx of brain mets (six months after the first two were treated with SRS) there were 14 newbies scattered throughout my brain. In cerrebellum as well as one on my pon/brainstem.

I was lucky in that all were under 1cm and I remained nearly asymptomatic. My choice was for a series of focalized rad tx's. We treated in batches of 4 twice. Going after the largest, most potentially dangerous, first.

The final six were done with two CyberKnife tx a few days apart.

This was over the course of a year+! So, depending on the size of yours and locations, and nerve! you could do this as well.

Yes, I've now 'used up' my total rad amount, too, as it is cumulative... but, I have had miraculous luck with Xeloda/Temodar for my current 8 brain mets... nearing two yrs of that combination.

My first dx with brain mets was in Sept. '02. I had the support of my partner (in every appt I had) for my decisions. I think this helped get the treatment I wanted. For the most part, I was calm and clear as to my choices, so I didn't sound like a raving idiot! That may have helped, too.

If you still get 'no' for an answer and are ok with the wait, try for a third opinion...

Wishing you very good luck in pursuing the course of treatment YOU choose for yourself, with much hope of long lasting results.

hugs,
pattyz

[Lala]

Lu Ann
I sent you an email. You are in my thoughts and prayers.

Hugs to you,

[MCS]

Oh Lu Ann,


such much fear and unknown. Just be as well informed as you can be even if it scares the hell out of you. information gives you power over your decsions and ability to handle whatever my come

I will think about you. please post as you've said so that we can be with you in spirit

MCS
Maria Singer

[lu ann]

My husband spoke to my rad. onc. yesterday about our concerns. She spoke to the head of the dept. today who agreed that my best course of treatment would be whole brain rad. at a mild to moderate dose. The most severe side effects I would have would be fatigue. I can't imagine being more tired then I already am. I will have to start wearing depends to bed, incase I don't wake up to go p. I usually am up every 2-4 hours at night to go.

We heard from C.T.C.A. about our insurance being accepted. Someone will be in touch to go over things with us further. I need to know from another provider what treatment they think is best.

I will keep all informed
Love, Lu Ann

P.S. I forgot to add. My husband asked my rad. onc. my prognosis. She replied that I am a hard case as my cancer is growing at a very slow rate. She said my body responds well to rad. tx. and along with chemo I could live a long time. I just don't want to be miserable in the meantime. Quality of Life is Sooo Important.

[Lala]

Lu Ann

You remain in my thoughts and Prayers.
Hugs to you

[MCS]

Lu Ann

Yes try to touch base with joe or Christine. I am shaking my head as I read your threads. Hang tough. Ok. We are all thinking of you and your daughter

Lots of love

MCS ( maria)

[Esther]

Lu ann, I received SRS treatment at Cedars Sinai in LA, and The MD"S there said I could always have WBR in the future. Having targeted rads does not preclude the option of WBR.

I would get a second opinion from a major cancer center on this, because I don't believe their information is correct. SRS does not rule WBR in the future if needed.

[Barbara H.]

Lu Ann,
I would get a second opinion. I was also told to get WBR and refused. That was three years ago. Good luck and keep us informed.
Thinking of you.
Barbara H.

[rentrac]

Dearest LuAnn,
I don't know much about Ohio geography, but have you considered the Cleveland Clinic for a second opinion? They are world renowned, and even if they aren't very close, they should be an excellent source for an opinion. I've been going to UNC for my second opinions; I call them my Greek Chorus. They are too far away for me to consider them for providing my immediate care, but they're on top of all the latest treatments and research. Consults from these big centers include review by experts in all relevent fields - radiologists look at the imaging studies, radiation oncologists, pathologists, oncologists, etc. It paid off for me in unexpected ways: a sharp eyed radiologist noticed something on the very edge of a neck-to-thigh PET and suggested an MRI of the brain. Thanks to him, we found 2 brain mets and at a size small enough to allow Gamma Knife. I had no obvious symptoms at the time, and probably would not have for another couple of weeks.
Know you are in my thoughts and prayers.
Rentrac

[Joe]

Luanne,

Feel free to call Christine anytime. I will email you our phone number. Here is a link to Gamma Knife "Centers of Excellence" in the midwest.:

http://www.irsa.org/midwst.html

You may also wish to get a second opinion from Dr. Keith Black's grou[ at the Maxine Durnitz Neroulogical Center in Los Angeles. De. Black is perhaps the nation's best neurosurgeons in the US.


Regards
Joe

[hutchibk]

LuAnn - another perspective from someone with brain mets...

We found my brain mets in April on MRI. I have no symptoms at all from the mets. There were two that were 9mm (one in the rt celebellum area and one in the rt parietal area) and several punctates, which look like the period at the end of this sentence. At the time, my docs went back and forth and finally agreed that WBR would be the prudent way to go. We also knew that we were switching my drugs to Tykerb/Xeloda. I was not ready for WBR, didn't think that is what I wanted to do at that point. I was leaning towards the targeted 'whack-a-mole' method, wanting to save WBR for last resort down the road. So, I asked my onc and rads onc if they were comfortable with us doing 'watchful waiting' for a month or 6 weeks to see what the Tykerb/Xeloda might do. They agreed that it would be a reasonable way to approach it. So that's what we did. I had an MRI last week, and it showed that there was no growth at all of the brain spots. They had remained completely stable on the Tykerb/Xeloda, and that one of the 9mm spots was less enhanced, which the radiologist said was a positive thing. Along with that great MRI result, my tumor markers fell from 37.5 to 17.5. My onc and rads onc both agree that we can continue 'watchful waiting' for another 6-8 weeks and do another MRI before we make any other decisions....

[Ceesun]

Luann, I am thinking of you and hoping for a positive result. I am glad and encouraged to hear that some of our sisters are doing well dealing with brain mets. YOU WILL Too! Ceesun...Cathy

[rentrac]

Lu Ann,
Thinking through options and then waiting for the next decision can be agonizing. Just wanted you to know you're in my thoughts and prayers daily. Let us know how you're doing.
Warmest wishes,
Rentrac

[Adriana Mangus]

Lu Ann:

How are you? Have you talked to Steph from Seattle? she has experienced this type of procedure; she's really nice and knowledgeable about this whole thing. I will keep you in my prayers....

[Soccermom]

Dear LuAnn,
Just wanted to let you know that you'll be in my thoughts and prayers. Hoping that you are able to find the treatment that nails those mets!

Marcia

[Esther]

I second what Joe says about Dr. Keith Black. He was one of the neuro-surgeons I consulted when I was first panicked about my brain mets in my cerebellum in January 06. I chose to receive my brain mets care there.

He is brilliant! He thinks outside the box, and explains his opinion and just gives you his opinion straight out. He is also an incredibly talented surgeon.

My success in dealing with my brain mets, and as of last Wed being able to say I am NED from 3 lesions in my brain, is due in large part to Dr. Black's phenomenal team at Cedar-Sinai's Maxine Dunitz Neurosurgical Institute.

Also Dr. Black and his team are all active in their particular hobbies, Dr. Black skydives and mountain climbs, Dr. Yu skiis, etc. They understood my need for a high quality of life continuing the sports I love. Just weeks after surgery to remove a lesion in my cerebellum this March, Dr. Yu cleared me for spring snow skiing. Now that's an understanding surgeon!!!

[lu ann]

I havn't been on board for the last 2 weeks. I was admitted to the hospital with double vision June 14 and I started WBR the following day. I have 5 more treatments. So far, so good. I know the fatigue will be coming, although I sleep all the time now. The double vision is just about gone. I don't know if it is the tx. or the decadron, but I'll take it. I fell last week from being dizzy and I don't want to do that again. My knees just buckled down underneath me. Thank you all for your cares and concerns. I will be in touch to let you know how things are going. Both my rad. and med. onc. say it's hard giving me a prognosis as my cancer is growing very slow. I guess that is a good way to think about it. Take care and God Bless You. Love, Lu Ann

[Lala]

Lu Ann
You are in my thoughts and Prayers. I hope you are feeling better soon. Hang in there, Hugs to you!

[cafe1084]

Sometimes, when we are at our weakest, that's when our true strength emerges. I'm praying and pulling for you, too.

Steph C

[Soccermom]

Lu Ann,
Sending you strength and love from Mississippi. Wish there was something more...

many warm hugs,marcia

[mslinda]

Sending prayer and good thoughts to you also Lu An.

Take care of yourself and sleep as much as you want.

Hugs,
Linda
S. Mississippi

[rentrac]

Dear LuAnn,

I've been worried about you! Sounds like the last couple of weeks have been too exciting. From your description, WBR sounds like it is a sanity and life saver treatment for you. Symptoms from brain mets are SCARY! Mine were just beginning, and even though I thought I was just getting extraordinarily klutzy (I had a cerebellar tumor), finding out the cause of the headaches, my museum quality bruises from running into things and my inability to pass all the neurological tests (like finger to nose with my eyes closed) took me days to get used to. Decadron is a mlixed blessing too- I felt GREAT at first: super clear thinking and my old energy as well! OF course, that soon changed and it took two tries to get titrated off the stuff. Three weeks later, I'm delighted to be losing the amazing "moon face", the Santa Belly, and the buffalo hump on my back are very slowly going down, and my skin doesn't feel like it's only one cell layer deep... I think it's up to 3 cells deep instead. But for all it's miserable side effects, Decadron sure made life more livable when I needed it. Hope it is doing the same for you.

Know that you and your family stay in my thoughts and prayers.
Warmest regards, Rentrac

[Sheila]

LuAnn
Are you being treated in Ohio or Zion, IL ? Just sending you a hug and lots of love and prayers to overcome this new bump in the road....

[Believe51]

Now and always we send prayers. This week we found out that my husband has 5 lesions on the brain-(ranging from 4-9mm). It is an unpleasant thought that our fight will be a bit more trying. We shall have you in our thoughts and prayers for peace of mind. The candle I just lit has your name on it Sweetheart..>>Waiting For A Miracle>>Believe51..(Marie G)

[caya]

LuAnn,

I am sending you all my prayers and best thoughts for a complete and speedy recovery from your Canadian neighbour.

All the best
Caya

[Sherryg683]

Thinking about you Lu ann, you are in my prayers..sherryg

[lu ann]

I will be finished with WBR July 9. I think i've done well on the tx. Other then the hair falling out and this outrageous appetite I don't feel much different. I was sleeping all the time before. My husband has been doing all the work around here. I'm soo lucky to have his support. God Bless all of you for giving me support. I'll keep you posted. Love, Lu Ann.

[Joy]

love and prayer for you from me, Lu Ann. I'm so glad to hear that you have been tolerating the treatment quite well. And so happy you are sharing your experience with us. I'm also sending a lot of gratitude and warmth to your husband for all he is doing-sounds like a gem who really understands what is important for you right now. How is your daughter?

Rest and pamper yourself!

[Believe51]

Checking up on you and sending you fresh prayers. My husband found out that he has many mets to the brain, not just 5 and the gamma knife is out for now, we will be doing a regime of 15 days WBR and rads to the pelvis. I am happy to hear that it will be over soon and he will be just as happy.

You are so special Sweetheart and I think of you often. Keep up the great work and thanks for the encouragement. Keep us posted!!

Waiting For A Miracle..>Believe51

[Jean]

Sending prayers your way for you and your daughter.

Kind Regards,
Jean