Brain mets - Thank you!

Beckie · 06-24-2007, 06:15 PM

I asked for advice a few weeks ago because my doctor was reluctant to let me have a brain MRI without symptoms. Several of you said to insist on the MRI. I had the MRI last Thursday, and my doctor called on Saturday and said I have 2 small lesions. I will see the radiation oncologist this week. Thank you for your encouragement!
I am also thankful for the information and people on this site. Because of you discussing your decisions for your treatments, I feel I am prepared to have an intelligent discussion concerning my treatment. I have learned so much!
By the way, this morning I watched part of a DVD called Reflections on Psalm 23 for people with cancer. I has 13 8-minute programs, and was filmed in Israel. I very much enjoyed it. It is available at visionvideo.com. When I went for my MRI, I told the Lord that if He would be glorified by my having brain mets, I was ok with it. Knowing He is my shepherd and only wants what is best for me makes it easy to have a positive attitude, and rest in His decisions. Now I just look for the opportunities to share.
Thank you so much for being there and for the prayers I know will be coming my way. I am praying for many of you also.

Beckie

Mary Jo · 06-24-2007, 06:33 PM

Hi Beckie,

I'm sorry that you found out you had 2 brain lesions BUT I am happy that an MRI was done and they were found. Now they can be dealt with.

I was also happy to hear of your confidence assurance in your Lord who loves you. Nothing is impossible with God and Peace only comes from Him.

My prayers for continued Peace and healing are with you Beckie.

Mary Jo

juanita · 06-24-2007, 06:44 PM

Just wanted to wish you well on your upcoming rads. I will keep you in my prayers!

Liz J. · 06-24-2007, 06:46 PM

Hi Beckie,

Thank the Lord you got the MRI. You were supposed to find out about this and you did. I am sorry that the lesions occured but by the Grace of God you now have the opportunity to do something about it.

Wishing you the best.

Sincerely,

Liz J.

Lala · 06-24-2007, 07:27 PM

Beckie,

Hugs to you. I am glad you insisted on the Brain MRI. I can certainly understand what you are going through. I have learned the best defense in fighting brain mets is a good neurosurgeon. I had a second opinion as well. There is much to think about while making the decision for treatment. If you have any questions please send me a private message. I had two lesions in my cerebellum that were successfully treated and are no longer there.

The most important thing to remember is that Hope Lives.
God Bless

Shell · 06-25-2007, 10:33 AM

Beckie-

I am sorry to hear your news, but am pleased that you were proactive about your treatment - I agree with the 2nd opinion suggestion and am always comforted by the knowledge of those on this board who are willing to share their experiences.

Please keep us posted.

Kind regards,

kacey · 06-25-2007, 12:07 PM

Beckie, I am so glad that you insisted but sorry your gut feeling was right.
Yes, God is with us through each and every step. With His help we will get through this but what is, is. We are never alone. Bless you and I will be thinking of you as you make your decisions.

Kacey

StephN · 06-25-2007, 12:38 PM

Sorry for your results, but the 2 spots seem very treatable.

Following your instincts and inquiring as to how to get your brain MRI is a lesson not be forgotten. Some of us stage IV fighters have done the same as you with the same results. This is the reason that this web site has as one if its tenats that brain screenings are a MUST.

It can be said that at times we are "led" down a path and that we have to go with that aiming our energy in that direction. Over the years with cancer as my constant companion, I have learned to take my instincts seriously as the message is REAL and must be understood and acted upon.

Our guardian angels do whisper to us from time to time and we just must stay open to those whisperings.

hutchibk · 06-25-2007, 03:45 PM

Beckie - I am sorry that the MRI showed anything, but all is not lost. You are better knowing than not knowing and you are better finding it earlier and smaller than later! Please keep in mind at this time, that now that you know about the brain mets, and that they are small, you have several options open to you to eradicate them. Targeted rads for one and possibly Tykerb/Xeloda would be an option, too. Talk to your oncs in detail about everything. Ask questions that make them think and not rely on their standard answers. I have done a fair amount of research on my brain mets options and have waved my docs off of whole brain radiation for the time being. (I have 5 small punctates about the size of this period . and two 9mm spots). And it turns out that I had a good plan that is working very very well. They didn't love my idea at first, but now, 2 months later, my docs are VERY happy with results so far and are in no rush to do any rads yet. Even targeted. The Tykerb/Xeloda has caused my tumor markers to drop 20 points in 4 weeks and appears to be efficiently crossing the blood brain barrier and keeping the brain mets stable and the 2 larger ones are now "less enhanced" than they were 7 weeks ago. We were ready to pull the trigger on targeted rads if needed, and will if ever indicated, but I advocated for my idea of "watchful waiting" while the new drugs did some work. My doc is impressed with the results and wants to keep it simple and re-scan in 8 weeks. You have several options to make them go away. Good Luck, and keep asking questions!

Jean · 06-25-2007, 04:30 PM

Dear Beckie,
I am sorry to hear that your MRI showed activity.
I am keeping you in my prayers.

Hugs,
Jean

Esther · 06-25-2007, 08:43 PM

Hi Beckie, I live right near you in Riverside. Where are you going for your brain mets treatment?

I chose to get my treatment from Dr. Black's team at Cedar-Sinai's Maxine Dunitz Institute.

Beckie · 06-25-2007, 10:36 PM

Esther,
I have Kaiser insurance and go to Riverside Kaiser for chemo and really love my oncologist and the department. I go to Ontario for radiation. I went there for my back and arm last year and was very pleased with the treatment. I have an appointment for Wednesday afternoon and will see what they have to offer for the brain. Yes, I will be very involved in choosing my treatment.
Hope to see you in August.
Brenda, depending on where mine are, and their size, I think the watchful waiting sounds like a very good option.
Thank you everyone for your input and your prayers.

Beckie

pattyz · 06-26-2007, 05:01 AM

Brenda,

It takes 'nerves of steel' to take the approach you have to your brain mets...not to mention going against the flow of 'advice'.

I so understand as you know.

So happy to hear that you have made an impression with your good results and may you continue to have excellent response from the treatments of YOUR choice!

Yea for you!!!

hugs,
pattyz

hutchibk · 06-26-2007, 08:12 AM

The key to watchful waiting in my case was the impending Tykerb/Xeloda. Since we knew that it should efficiently cross the blood-brain barrier, we had a decent chance that it might get us somewhere with the brain mets. Also, the other key is to have MRIs often. Mine are scheduled at 6 weeks apart. If I were not switching to Ty/Xel, I would not have have asked for this approach. And my plan is to do targeted rads if the next MRI only shows stable disease and not noticible shrinkage. But at least I was able to wave them off of WBR. If things go the other direction, I will go to MD Anderson and talk to them about targeted rads in combo with Temodar, etc. But for now, we are not losing ground and are giving the drugs time to work if they're gonna. It was a calculated risk, but I also asked my docs to tell me up front if they thought it was a really bad idea, and both of them said that upon further consideration chances were very slim that we would see very much progression in such a short time, that the spots were not in dangerous places and that there was no swelling around any of them. A lot of details were taken into consideration before we all agreed that this approach was OK.

Esther · 06-26-2007, 03:53 PM

Brenda what I admire about you is that you are making your own informed choices. That's great, whatever the future brings you, you know that you are doing what is right for you.

Esther · 06-26-2007, 03:55 PM

Beckie, good to hear you have everything under control and you are happy with your medical team. I'm looking forward to the gathering in August, would love to meet you there.

Catherine · 06-29-2007, 11:31 PM

Wow, once again I am in awe of the information and support on this site. When do you ask your doctor for a brain MRI? I am a 14-month survivor and feel good. Still on Herceptin til the end of this year.

Do I need to ask for a brain MRI now. Or will I get a "feeling" of symptoms if this should occur in my body? I am stage IIb.

BECKIE,
So glad that you insisted on the MRI. Not the kind of news you wanted, but sure sounds like from our friends on the board that it is treatable. Keep up the good work of asking for the best treatment and tests available. We are all behind you.

hutchibk · 06-30-2007, 10:12 AM

I had no symptoms at all. We found my mets incidentally. We had a planned MRI of a known bone spot in my neck at C3. I asked my onc if I could go ahead and get one of the brain since I would be on the table anyway. It had been 18 months since we had MRIed the brain and I wanted to be sure all was still clear. He agreed it would be prudent since we were there anyway. We are both glad that I suggested it!

I think it is becoming time (at least for mets patients...) that if our docs aren't scheduling brain MRIs at least once a year, that we must start INSISTING upon them. The key to keeping this stuff under control and giving ourselves as many options as possible is finding reoccurances as early as possible!