Lani, propeller heads, and WBR sisters/brothers ~ looking for info and ideas

[freyja]

Brenda,
I just wanna tell you I'm following this and thinking of you. I'm so impressed with your approach and methods of attack. It sounds to me like some travel is definitely in your future. I agree that only a surgeon can tell you what's surgically possible, and only a rad onc can tell you what they can really do.
I'm confident in your strength and determination, and you've got a really smart noggin...I think it can take it! Whatever "it" ends up to be. You'll always be Brenda and that's what we want. Your spirit is vibrant and will always shine, even if your memory has a few cloudy spots or you need to get some new glasses...whatever. As long as we get to hear that strong voice of positivity and reason that we love so much.
Love, Celeste

[hutchibk]

You all rock my world...

My cousin is a top neurosurgeon in Texas and he confirmed for me that surgery is much much too risky in this area (optic nerve/pituitary) and that given my specifics, they wouldn't do it in his practice. Also, he said that Gamma/Cyber/IMRT targeted SRS is as well. He confirmed that everything my rads onc is saying is right on as the preferred treatment for these tumors.

The question of intrathecal herceptin is a good one to ask my med onc about tomorrow.

We have to move on these asap as the resulting SEs from any edema (which I don't have) or anymore growth (thank goodness they are slow) could be devastating, as in loss of eyesight. And then there are already the hormonal issues I am experiencing such as "water diabetes" and the potential for hypopituitarism. I will be going to see and endocrinologist within the next week as well.

That being said, I agree with my docs that I don't have the luxury of pursuing anything experimental that would require travel to another state... I wish I could be a lab rat right now, but I have to recognize that time won't allow.

Our plan will probably be conventional fractionation radiation to the tumor field over 20-25 days, but I will know more for sure after I meet with him again on Thursday, after my PET tomorrow. The PET will tell us whether a systemic pharmaceutical change is also warranted.

[freyja]

That all makes a whole lot of sense, Brenda. I can't say I would want to leave home in that situation anyway if I didn't absolutely have to. Sounds like you have access to an excellent team.
Big Love to ya, Celeste

[CourtneyL]

Hi Brenda,

I am so sorry to hear about your progression. Just wanted to let you know I am thinking of you, praying hard and sending healing vibes your way. I too am following this thread and your journey with great interest. I am trying to avoid WBR too and am interested in having something in my back pocket should I need it.

My CA 15-3 tumor markers have been slowly rising and I'm a little worried that there may be some progression upstairs. I go for another Brain MRI this Thursday and we will have a better idea of what could be going on. Please keep us posted on your treatment decisions.

Cheering you on and praying for the best. We CAN do this!

[Darlene Denise]

DAMN! DAMN! DAMN! I want options! Are we sure the Proton Beam can't be used? I'm always looking for a crack in the door!

You are in capable hands guided by strong minds and you will find your way trough this. I'm sorry it is such a sucky, bumpy road that you find your self on. I wish I could wish it all away for you. I wish I were able to help in a more meaningful way, I wish we could all be with you during this, I wish, I wish...

For now, I wish you news of NED on the Pet tomorrow .

xoxoxooDarlene

[hutchibk]

Thanks Darlene... actually I have sent the Proton Beam question to my Onc (there is one at MD Anderson in Houston) - so he will let me know the up sides, down sides, and reality of whether it could be an option.

Lani - I have asked the Boswellia question and it is not supposed to be taken while on Tykerb, which I am on.

Thanks again all... keep the ideas coming!

[hutchibk]

Answers about Proton and intrathecal Herceptin:

1. there are no studies that show superiority of proton beam therapy over other radiation techniques in this setting.

2. intrathecal herceptin treats tumors inside the BBB, these tumors are outside the BBB.

[alicem]

Hi Brenda,

Am I right in reading that it is good news that these tumors are outside of the BBB?

I hope your PET scan went well today. I'm thinking of you my dear!

Alice

[hutchibk]

Hi Alice, I don't know how to answer that... these mets are actually not totally uncommon (in the sella turcica and optical chiasm area), and yes, outside of the BBB has to mean something. I just don't know what it is. I will ask my doc if that is good. I am sure on some level it is, but then again, this location is problematic. Sigh. If it's not one thing it's another...

On the good news side, my PET came back clear! So, these little buggers are all we need to contend with right now, no systemic treatment changes. I just wish they were easier buggers to deal with. Oh well, we will figure it out. They are NOT impossible and there is a proven standard radiation path, but my rads onc has something up his sleeve and I will find out tomorrow what that is.

[Darlene Denise]

Brenda: How do they know for sure they are breast cancer mets and not some other type of tumor? There are other tumors that develop there. I am interested in this for you and me. I have a menginoma that we continue to watch and all of my scans say dural met can not be excluded. We have watched it for 18 months but I am told you can not be 100% sure unless it is removed and biopsed.

With the innovative work at, say, University of Pittsburgh where they pioneered the Endonasal Endoscopic procedure I know they work on this area of the brain, any thought that this could be a consideration?

I wasn't thinking the Proton Beam was better, I was just hoping it could treat that area since it stops at the tumor site unlike focalized rads.

I hope you feel all of our concern and it comforts you in some way.

xoxoxoxoDarlene

[hutchibk]

Hi all...

Puzzle solved. Decisions made. Good news all around. Whew. Now if I can just lay still for 20 minutes a day for the next 5 weeks, we are golden! And I have to say, MY DOCTORS ROCK!

NO WBR needed. They have been doing their best puzzle solving all week. The PET is clear, the only thing we see are these two very small spots in the sella turcica and infundibulum (pituitary stalk) next to the optic chiasm.

We will treat with a mild version of IMRT targeted (3D conformal, but NOT stereotactic) rads only to the tumor sites. 28 days of fractionated targeted rads... targeted being the key word. No damage to other tissue or surrounding structures.

We don't know for sure 100% if it's mets or another cancer but we assume it is bc mets. It is too dangerous an area to do biopsy. Even if it were another cancer or adenoma, we would still be treating it the same way.

It turns out that my rads onc is very well versed in Proton and says that there are only a few settings where it is very excellent and appropriate to use Proton and this is not one of them... when it is appropriate for a patient, he doesn't hesitate to send them.

[StephN]

Dear Brenda -
Been following all this as interesting for the fact of the tumor locations. I have heard of skull mets and leptominenges, but not this area.

Do your docs have a theory about them? Such as could they be cells from INSIDE your brain that were picked up by cerebral spinal fluid or blood and deposited there?

As we stubborn types live longer, more of these unusual instances crop up. I am so happy for you and can "hear" the relief in your post!

[alicem]

Brenda,

I'll be adding prayers of gratitude for your fabulous team of doctors tonight. I am so happy for your good news and for the fact that you have a good plan of action. Lots to be thankful for!

alice

[Mary Anne in TX]

Brenda, when does your treatment begin? Day, time etc. Sure am pulling for your team to be in perfect form for this adventure. They have the "perfect patient"! Much love, ma

[Rich66]

Maybe not relevant to your situation but will post here anyway:
Three-Staged Stereotactic Radiotherapy Without Whole Brain Irradiation for Large Metastatic Brain Tumors

Int J Radiat Oncol Biol Phys. 2009 Aug 1;74(5):1543-1548, Y Higuchi, T Serizawa, O Nagano, S Matsuda, J Ono, M Sato, Y Iwadate, N Saeki

Register or log in to get...
› Take home message
› Expert commentary / study in context


ABSTRACT

For tumors >10 cc at baseline, staged RT with a 2-week interval between 10-Gy doses reduced tumor volume by nearly 40%.
Purpose. To evaluate the efficacy and toxicity of staged stereotactic radiotherapy with a 2-week interfraction interval for unresectable brain metastases more than 10 cm3 in volume.
Patients and Methods. Subjects included 43 patients (24 men and 19 women), ranging in age from 41 to 84 years, who had large brain metastases (> 10 cc in volume). Primary tumors were in the colon in 14 patients, lung in 12, breast in 11, and other in 6. The peripheral dose was 10 Gy in three fractions. The interval between fractions was 2 weeks. The mean tumor volume before treatment was 17.6 ± 6.3 cm3 (mean ± SD). Mean follow-up interval was 7.8 months. The local tumor control rate, as well as overall, neurological, and qualitative survivals, were calculated using the Kaplan-Meier method.
Results. At the time of the second and third fractions, mean tumor volumes were 14.3 ± 6.5 (18.8% reduction) and 10.6 ± 6.1 cm3 (39.8% reduction), respectively, showing significant reductions. The median overall survival period was 8.8 months. Neurological and qualitative survivals at 12 months were 81.8% and 76.2%, respectively. Local tumor control rates were 89.8% and 75.9% at 6 and 12 months, respectively. Tumor recurrence-free and symptomatic edema-free rates at 12 months were 80.7% and 84.4%, respectively.
Conclusions. The 2-week interval allowed significant reduction of the treatment volume. Our results suggest staged stereotactic radiotherapy using our protocol to be a possible alternative for treating large brain metastases.

[chrisy]

Brenda,
Yes, your doctors do totally rock - as do you! You've done a fabulous job of assembling a great team.

Bet you never thought you'd be using words like

"sella turcica and infundibulum (pituitary stalk) next to the optic chiasm" in a sentence.

Ho hum, oh to be blissfully ignorant of medical jargon again...

Will be holding you in my prayers, Brenda.

chris

[Jackie07]

Brenda,

Looks like you are in good hands. Sending good thoughts and prayers your way (via I-35?

Jackie07

[hutchibk]

So Steph - I asked the question today, if these are indeed bc mets, how do they get deposited to that area, and the answer is through the blood stream.

But, my doc and I did consider today the possibility that this could be pituitary adenoma instead of bc met. It won't change the way we treat, but it could answer that important question. I will be seeing an endocrinologist for follow-up and short of the biopsy option, she might be able to determine that for us based on the MRI and blood work.

I have to go to the endocrinologist because there can be resulting hormone issues due to the sensitive pituitary being a little squished. I have had polypepsia (excessive thirst) and polyuria (excessive tee teeing)... so as I get even more answers, I will keep you all updated.

[caya]

Sorry Brenda that you have to go through all this. You are a true warrior, and I am sending prayers from Canada.

all the best
caya

[Lani]

Hutch bk

I think the word is polydypsia rather than polypepsia

Drink up!