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

[hutchibk]

So, yesterday's MRI showed two new itsy bitsy critters in my noggin. Crap on a crapstick.

I will meet with my rads onc on Monday to get his assessment and see the pictures. I will have more exact details and measurements then.

The plan is to keep me on Tykerb/Herceptin systemically because I have nothing new extracranially... it is holding me well below the chin and we don't want to upset the entire apple cart. Adding anything new to T/H at this point will probably cause a side effect 'bonanza' that we don't need to deal with just now.

But for options to knock it out of the brain, we seem limited now. There is thought that I probably have more little critters waiting in hiding that we can't see yet on MRI. So, I believe that my oncs will probably offer whole brain radiation as their preferred option at this point. I asked my med onc on the phone if he has experienced WBR to be curative of recurring brain mets, and he said yes he has... he has had a lot of patients who put an end to their brain recurrences with WBR. But, not always of course, for some it was only a temporary gain, not curative. And of course I know there are no guarantees.

I am thinking of asking for another zapping with targeted rads (our good old whack-a-mole method) to buy some more time to do research, get my 6 month PET at the end of Sept to verify we are stable below the chin, and see what's in trials/pipeline, just to be sure I have performed due diligence before I sign on to the WBR route. If you have any ideas, of course I would love to hear 'em!

So, I am calling all my sisters/brothers here who might have ideas that I have not thought of yet.

Especially any and all who have had WBR and can share your experience through treatment, after treatment, any and all side effects (temporary and lasting) including cognitive effects.

Thanks guys... you're the best!

[Lani]

Have you had a brain biopsy of any of your brain mets? If so, you might want to send some of the specimen for testing for Na/I symporter, a marker which theoretically makes treatment with radioactive iodine possible (simple treatment, small molecules so should cross the blood-brain barrier, already FDA approved for treatment of thyroid disorders). The other variable which decides whether one is a candidate for this treatment from what I understand is knowing how much radiation the brain has already had, so it sounds like it is something worth looking into BEFORE deciding for WBR.

Might help you "not burn any bridges"

J Neurooncol. 2009 Jul 19. [Epub ahead of print]

Breast cancer brain metastases express the sodium iodide symporter.

Renier C, Vogel H, Offor O, Yao C, Wapnir I.
Department of Surgery, Stanford University School of Medicine, 300 Pasteur Drive H 3625, Stanford, 94305-5655, CA, USA.
Breast cancer brain metastases are on the rise and their treatment is hampered by the limited entry and efficacy of anticancer drugs in this sanctuary. The sodium iodidesymporter, NIS, actively transports iodide across the plasma membrane and is exploited clinically to deliver radioactive iodide into cells. As in thyroid cancers, NIS is expressed in many breast cancers including primary and metastatic tumors. In this study NIS expression was analyzed for the first time in 28 cases of breast cancer brain metastases using a polyclonal anti-NIS antibody directed against the terminal C-peptide of human NIS gene and immunohistochemical methods. Twenty-five tumors (84%) in this retrospective series were estrogen/progesterone receptor-negative and 15 (53.6%) were HER2+. Overall 21 (75%) cases and 80% of HER2 positive metastases were NIS positive. While the predominant pattern of NIS immunoreactivity is intracellular, plasma membrane immunopositivity was detected at least focally in 23.8% of NIS-positive samples. Altogether, these findings indicate that NIS expression is prevalent in breast cancer brain metastases and could have a therapeutic role via the delivery of radioactive iodide and selective ablation of tumor cells.
PMID: 19618116

^^^^^

Mol Imaging. 2006 Apr-Jun;5(2):76-84. Links
Bioluminescent Monitoring of NIS-mediated 131I Ablative Effects in MCF-7 Xenografts.

Ghosh M,
Gambhir SS,
De A,
Nowels K,
Goris M,
Wapnir I.
Stanford University School of Medicine.
AbstractOptical imaging has made it possible to monitor response to anticancer therapies in tumor xenografts. The concept of treating breast cancers with 131I is predicated on the expression of the Na+/I- symporter (NIS) in many tumors and uptake of I- in some. The pattern of 131I radioablative effects were investigated in an MCF-7 xenograft model dually transfected with firefly luciferase and NIS genes. On Day 16 after tumor cell implantation, 3 mCi of 131I was injected. Bioluminescent imaging using d-luciferin and a cooled charge-coupled device camera was carried out on Days 1, 2, 3, 7, 10, 16, 22, 29, and 35. Tumor bioluminescence decreased in 131I-treated tumors after Day 3 and reached a nadir on Day 22. Conversely, bioluminescence steadily increased in controls and was 3.85-fold higher than in treated tumors on Day 22. Bioluminescence in 131I-treated tumors increased after Day 22, corresponding to tumor regrowth. By Day 35, treated tumors were smaller and accumulated 33% less 99mTcO4- than untreated tumors. NIS immunoreactivity was present in <50% of 131I-treated cells compared to 85-90% of controls. In summary, a pattern of tumor regression occurring over the first three weeks after 131I administration was observed in NIS-expressing breast cancer xenografts.
PMID: 16954021
^^^

[hutchibk]

This is very interesting... I have treated two of my cats with hyperthyroid over the years with this treatment. Ha. And two good friends of mine have also had it for pre-cancerous thyroid nodules, so I am very aware of what it is.

Thing is, my brain mets have all been pretty deep into their respected brain areas, and I don't know how we could get a biopsy without resulting problems. Hmmmm. I will have to ask on Monday about that. This is something that I am interested in as it sounds as if it could fit the bill of treating only the brain, but not really causing too much havoc elsewhere. The only bugger being the problem of the biopsy.

[Darlene Denise]

Brenda: I suffer from brain holes. Eleven mets now with Cyberknife. I have read your history, but could you recap how many total you have had and confirm you have had 5 sessions of IMRT? How many total grays have you had to the brain? Are the previous mets all gone?

Had any thoughts of Avastin? What about Proton Beam Therapy? Would it/could it be used to save on radiation exposure for later use?

I will be thinking of you and brainstorming (best my brain will let me) about your circumstances.

I have a friend who was sucessfully treated in 2002 with gamma followed by WBR with no reccurences, but it made her very sick for 6 months and she has had cognitive issues with memory and now takes Ritilin. She also only presented with one brain met. A trade off, I guess, to be still with us and no reccurences

xoxoxox
Darlene

[Believe51]

Well Missy, I have had you on the mind even more since finding out this news. I can understand about not wanting to add anything else. If you did, you know I admire the results of Temodar. The important thing here is the body being treated systemically and responding is a blessing. The brain however, is an issue and although I do not compare anyone's journey I most certainly bring my experience up to the base.

Ed has been fighting one of the worst documented case of brain mets in the state for over 25 months. His WBR was aggressive and needed and for a person in such a state, 25 months is our blessing. WBR is something we like to keep in reserve and I have seen the wonders it can produce. My concern for you is to find out how many gray units of radiation total as Darlene mentioned. I would avoid the WBR because you may want to keep that in the box.

Lani and I have some information to share, very recent research too. In the meanwhile find out if there is any edema, this is important. Finding out that there is no edema helps you in the sense that you may be able to postpone such a feat as WBR. You must ask how these things are growing. Are they neat and round, are they distorted? How fast are they growing. Sometimes we are able to buy time by finding the growth rate. We have been lucky with many things in Ed's brain.

I would find out the details and ask some of these questions. I can promise you that when you get those answers the rest of the pieces will fall together. As for WBR, side effects for Ed are mighty different than others. His persistent brain issues are not fair to discuss. He is almost deaf some of that from his music, some from radiation. His extremely high IQ has changed dramatically, memory...again, copious amounts of opiates and narcotics. And most importantly, he has received more radiation to the brain than suggested.

Brain swell from WBR can occur many months after actual radiation along with other side effects. For us it did what we needed it to do. For you, I would wait it out, get your details, try to postpone. You have many more years that WBR can be postponed IMO and this may be a constant battle. If Ed could do this in a hopeless situation I know my Hucklebuck will have no problemo!! You will maintain and overcome, I am sure of it.

My mind in in a million places and I am sure I will have more that I need to post. I will get some information for you in the upcoming days. Do not consider Interthecial Herceptin right now, pleaseeeeee. Breathe. I am right here and I love you.

[hutchibk]

Denise, I have had IMRT (same concept/theory as Cyber) - last Sept to 5 different spots. This past June to one little new spot. So up until now, I have had 6 spots targeted.

Marie, my spots are always very small, and never have edema. I don't know about these yet, but the first 6 were sort of round but not very well enhanced, and not uneven on the edges. Does that help? My rads onc said that the first 6 looked to be slow growing.

I am definitely planning to push for more targeted on these, while I start to drill down and study the new info that you and Lani are going to share with me. What time does class begin?

Ha. Love you all. Thanks for being there and being the smartest women in the world.

[Believe51]

Yes, this all helps....push to target them. I feel much more positive than I did last post. 'Rock On With Your Bad Self'!!!>>Believe51

[Patb]

I can't offer any advice but it sounds like you
are getting very helpful suggestions. My thoughts
are with you, you are a fighter and a planner and
with your Dr., I know you will win another one.
patb

[Darlene Denise]

Brenda: I noticed your progression occured after dropping the Xeloda. Coincidence or contributory??

I recall in a pm that I asked why you had elected to drop Xeloda and you mentioned that you would inquire with your onc when he got back from vacation. What was his response? When I consulted at Dana, it was suggested that Xeloda be given with Tykerb for the brain and as I understand it, Tykerb works best with Xeloda.

Also, what about Patupilone? Cleveland clinic has a trial going on. I stay interested in Avastin. Temodar also.

Any thoughts of a second opinion at MD or Dana, etc? My onc is brilliant, but he always wants all of our best resources when making such a decision and encourages me to go get us some good info, so we can make my best choice. As he reminds me, he is a local onc and not exposed daily to the latest treatments, as they are in research settings. I know you are very close to yours, but two heads are better than one. I also have found varied info and philosophy from rad onc to rad onc. Again, I know you love "Patch Adams," but, maybe some other input from a university facility that offers all types of radiation options and equipment? If you find resistance in getting focalized treatment (I did), I found much more aggressive treatment options using SRS at places like UPMC and UVA and I'm sure you would find like thinking at all of the wonderful places you have access to in Texas.

I know all to well the fears and difficult choices this involves. I am not wanting WBR, but I also think it may help with preventing Lepto, so, I am trying to open my mind to this possibility for myself. Several of my mets are in the posterior fossa region and I worry about spread to the CSF, which is why I will not pursue chemo/biological agents alone without some type of radiation treatment.

I think your time to progression and small number has demonstrated that there may not be a whole tribe of micros living up there up there, so, if you go with focalized treatment and reshuffle the chemo deck, perhaps add back Xeloda or bring in Avastin or Temodar and scan closely, that might be a reasonable course of treatment. Even when I saw Dr Lin at Dana looking for novel ways to use biological agents and/or chemo for micromet prevention, I learned it is not ready for prime time and was encouraged to go the WBR route. I'm still chicken to nuke my whole noggin tough. Cluck! Cluck! Plus I have a hard time with the 25% recurrance rate and no over all survival advantage!?

I had 8 treated in 09/08 and was told to expect WBR if progression was soon or numerous. When my next batch popped up in June, I was offered the choice and didn't feel forced into WBR and since I had not used Tykerb yet, that seemed reasonable to stay with Cyberknife and change up with adding Tykerb and Xeloda. I live in constant fear and scan again the end of September.

Anyway, just random thoughts and continued love and well wishes to a classy, smart dame! I wish we lived closer so we could have some martini therapy! I prefer mine in sugar rimmed glass, but, would consider it in an IV bag!

xoxoxoDarlene

[hutchibk]

Denise, the genesis and continuation of my brain mets story and treatments was this: Apr 2007 diagnosed with 3 small measurable brain spots/metastasis, and numerous "punctates".

I was offered WBR followed by Tykerb/Xeloda. This was one month after Tykerb came into mass access. My docs and I all agreed to approach the plan backwards in a way. We decided to start Tykerb/Xeloda first, monitor me closely, see what that gained us, and then consider WBR if warranted.

Tykerb/Xeloda eliminated the brain mets on its own with no rads, for 18 months, and kept everything below the chin completely stable.

Last Sept we saw 5 of the original spots "wake" up again. They hadn't grown, but they had started to "shine" on MRI. So, we decided to target them with IMRT. It knocked them out and we switched my systemic treatment to Tykerb/Herceptin.

Ty/Herc kept me stable and clear on MRI in the brain until we saw a new spot in June, 2 months ago. (not one that showed up originally, a totally new one). It has continued to keep me stable below the chin.

We targeted that one with IMRT. The MRI last week was the follow-up to see how it looked after zapping that one, and now they see the two new little critters.

I asked him about adding Xeloda back in - if there was any synergy with the Ty/Herc and he says he believes that my fairly lengthy exposure to Xeloda already speaks to potential resistance to it, and if we did add it back in that we would see more really uncontrollable side effects than anything.

Same with adding Temodar right now, or switching to Avastin... but those are deeper questions that I have for them next week. I don't know if he would add either with Ty/Herc, and he is not inclined to upset the whole apple cart and remove me from Ty/Herc since it is holding me very stable below the chin. He also does not believe it is time for trial or experimental anything yet. He has associates at MDA and Baylor in Houston (as well as elsewhere), so I don't have to go there in person, he reaches out for input if we need it.

But, he is not opposed to me bringing in things that I learn here, and mulling them over....

So, what I plan to do is have these two new little critters target zapped (whack-a-moled) and buy some time to look farther, deeper, wider before signing on for WBR. I at least want to get my PET scan done at the end of Sept to verify that the torso is still stable. If it isn't, then we would have to start talking about changing the systemic treatment, which could include things like Temodar or Avastin, etc...

Plus, it buys me more time to get some travel done with my sweetie before I might have to start WBR and all the recovery that will come with that.

Keep the ideas coming girls. I am looking forward to my classes with Marie and Lani!!

[Lani]

If you decide to do a West Coast tour to check out the possibilities, I believe Esther went to Stanford for some Cyberknife treatment (I believe of non-brain mets, if I remember correctly) Dr. Adler, a neurosurgeon at Stanford invented the Cyberknife.
A very thoughtful and down-to-earth radiation therapy MD specializing in breast ca mets to the brain and GBM (primary brain tumors), Penny Sneed at UCSF has 104 articles on PubMed. Here are 20 including some on permanent brachytherapy (implantable seeds) of radioactive iodine, so perhaps she could review your options with you.

Here are 20 of the 104:
Gamma Knife Radiosurgery for Brain Metastases from Primary Breast Cancer.
Kased N, Binder DK, McDermott MW, Nakamura JL, Huang K, Berger MS, Wara WM, Sneed PK.
Int J Radiat Oncol Biol Phys. 2009 Apr 2. [Epub ahead of print]
PMID: 19345514 [PubMed - as supplied by publisher]
Related Articles
2:
Prognostic factors and grading systems for overall survival in patients treated with radiosurgery for brain metastases: variation by primary site.
Golden DW, Lamborn KR, McDermott MW, Kunwar S, Wara WM, Nakamura JL, Sneed PK.
J Neurosurg. 2008 Dec;109 Suppl:77-86.
PMID: 19123892 [PubMed - indexed for MEDLINE]
Related Articles
3:
Effect of composite sector collimation on average dose fall-off for Gamma Knife Perfexion.
Ma L, Verhey L, Chuang C, Descovich M, Smith V, Huang K, McDermott M, Sneed P.
J Neurosurg. 2008 Dec;109 Suppl:15-20.
PMID: 19123883 [PubMed - indexed for MEDLINE]
Related Articles
4:
Phase II study of erlotinib plus temozolomide during and after radiation therapy in patients with newly diagnosed glioblastoma multiforme or gliosarcoma.
Prados MD, Chang SM, Butowski N, DeBoer R, Parvataneni R, Carliner H, Kabuubi P, Ayers-Ringler J, Rabbitt J, Page M, Fedoroff A, Sneed PK, Berger MS, McDermott MW, Parsa AT, Vandenberg S, James CD, Lamborn KR, Stokoe D, Haas-Kogan DA.
J Clin Oncol. 2009 Feb 1;27(4):579-84. Epub 2008 Dec 15.
PMID: 19075262 [PubMed - indexed for MEDLINE]
Related Articles
5:
Distinguishing recurrent intra-axial metastatic tumor from radiation necrosis following gamma knife radiosurgery using dynamic susceptibility-weighted contrast-enhanced perfusion MR imaging.
Barajas RF, Chang JS, Sneed PK, Segal MR, McDermott MW, Cha S.
AJNR Am J Neuroradiol. 2009 Feb;30(2):367-72. Epub 2008 Nov 20.
PMID: 19022867 [PubMed - indexed for MEDLINE]
Related Articles
6:
Surgical resection and permanent iodine-125 brachytherapy for brain metastases.
Huang K, Sneed PK, Kunwar S, Kragten A, Larson DA, Berger MS, Chan A, Pouliot J, McDermott MW.
J Neurooncol. 2009 Jan;91(1):83-93. Epub 2008 Aug 22.
PMID: 18719856 [PubMed - indexed for MEDLINE]
Related Articles
7:
Radiation therapy of pathologically confirmed newly diagnosed glioblastoma in adults.
Buatti J, Ryken TC, Smith MC, Sneed P, Suh JH, Mehta M, Olson JJ.
J Neurooncol. 2008 Sep;89(3):313-37. Epub 2008 Aug 20. No abstract available.
PMID: 18712283 [PubMed - indexed for MEDLINE]
Related Articles
8:
Brain metastases in breast cancer: clinical and pathologic characteristics associated with improvements in survival.
Melisko ME, Moore DH, Sneed PK, De Franco J, Rugo HS.
J Neurooncol. 2008 Jul;88(3):359-65. Epub 2008 Apr 9.
PMID: 18398574 [PubMed - indexed for MEDLINE]
Related Articles
9:
Gamma knife radiosurgery for brainstem metastases: the UCSF experience.
Kased N, Huang K, Nakamura JL, Sahgal A, Larson DA, McDermott MW, Sneed PK.
J Neurooncol. 2008 Jan;86(2):195-205. Epub 2007 Jul 13.
PMID: 17628747 [PubMed - indexed for MEDLINE]
Related Articles
10:
Management of newly diagnosed single brain metastasis using resection and permanent iodine-125 seeds without initial whole-brain radiotherapy: a two institution experience.
Dagnew E, Kanski J, McDermott MW, Sneed PK, McPherson C, Breneman JC, Warnick RE.
Neurosurg Focus. 2007 Mar 15;22(3):E3.
PMID: 17608356 [PubMed - indexed for MEDLINE]
Related Articles
11:
Phase I trial of gross total resection, permanent iodine-125 brachytherapy, and hyperfractionated radiotherapy for newly diagnosed glioblastoma multiforme.
Chen AM, Chang S, Pouliot J, Sneed PK, Prados MD, Lamborn KR, Malec MK, McDermott MW, Berger MS, Larson DA.
Int J Radiat Oncol Biol Phys. 2007 Nov 1;69(3):825-30. Epub 2007 May 23.
PMID: 17512132 [PubMed - indexed for MEDLINE]
Related Articles
12:
Treatment for posterior fossa dissemination of primary supratentorial glioma.
Smith JS, Parney IF, Lamborn KR, McDermott MW, Sneed PK, Chang SM.
J Neurosurg. 2007 Apr;106(4):567-74.
PMID: 17432705 [PubMed - indexed for MEDLINE]
Related Articles
13:
Standard treatment and experimental targeted drug therapy for recurrent glioblastoma multiforme.
Chang SM, Butowski NA, Sneed PK, Garner IV.
Neurosurg Focus. 2006 Apr 15;20(4):E4. Review.
PMID: 16709035 [PubMed - indexed for MEDLINE]
Related Articles
14:
Prognostic value of detecting recurrent glioblastoma multiforme in surgical specimens from patients after radiotherapy: should pathology evaluation alter treatment decisions?
Tihan T, Barletta J, Parney I, Lamborn K, Sneed PK, Chang S.
Hum Pathol. 2006 Mar;37(3):272-82.
PMID: 16613322 [PubMed - indexed for MEDLINE]
Related Articles
15:
Diagnosis and treatment of recurrent high-grade astrocytoma.
Butowski NA, Sneed PK, Chang SM.
J Clin Oncol. 2006 Mar 10;24(8):1273-80. Review.
PMID: 16525182 [PubMed - indexed for MEDLINE]
Related Articles
16:
Efaproxiral: should we hold our breath?
Sneed PK.
J Clin Oncol. 2006 Jan 1;24(1):13-5. Epub 2005 Nov 28. No abstract available.
PMID: 16314614 [PubMed - indexed for MEDLINE]
Related Articles
17:
Radiosurgery in metastatic brain cancer.
McDermott MW, Sneed PK.
Neurosurgery. 2005 Nov;57(5 Suppl):S45-53; discusssion S1-4. Review.
PMID: 16237288 [PubMed - indexed for MEDLINE]
Related Articles
18:
A phase II study of concurrent temozolomide and cis-retinoic acid with radiation for adult patients with newly diagnosed supratentorial glioblastoma.
Butowski N, Prados MD, Lamborn KR, Larson DA, Sneed PK, Wara WM, Malec M, Rabbitt J, Page M, Chang SM.
Int J Radiat Oncol Biol Phys. 2005 Apr 1;61(5):1454-9.
PMID: 15817350 [PubMed - indexed for MEDLINE]
Related Articles
19:
Stereotactic radiosurgery and interstitial brachytherapy for glial neoplasms.
McDermott MW, Berger MS, Kunwar S, Parsa AT, Sneed PK, Larson DA.
J Neurooncol. 2004 Aug-Sep;69(1-3):83-100. Review.
PMID: 15527082 [PubMed - indexed for MEDLINE]
Related Articles
20:
Phase II study of temozolomide and thalidomide with radiation therapy for newly diagnosed glioblastoma multiforme.
Chang SM, Lamborn KR, Malec M, Larson D, Wara W, Sneed P, Rabbitt J, Page M, Nicholas MK, Prados MD.
Int J Radiat Oncol Biol Phys. 2004 Oct 1;60(2):353-7.
PMID: 15380566 [PubMed - indexed for MEDLINE]
Related Articles

[Lani]

One of those 20 which might intrigue you:

Neurosurg Focus. 2007 Mar 15;22(3):E3.Links

Management of newly diagnosed single brain metastasis using resection and permanent iodine-125 seeds without initial whole-brain radiotherapy: a two institution experience.

Dagnew E, Kanski J, McDermott MW, Sneed PK, McPherson C, Breneman JC, Warnick RE.
Department of Neurosurgery, The Neuroscience Institute, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA.
OBJECT: Whole-brain radiotherapy (WBRT) after resection of a single brain metastasis can cause long-term radiation toxicity. The authors evaluated the efficacy of resection and placement of 125I seeds (without concomitant WBRT) for newly diagnosed single brain metastases. METHODS: In a retrospective review from two institutions (1997-2003), 15 women and 11 men (mean age 55 years) with single brain metastasis underwent gross-total resection and placement of permanent low-activity 125I seeds. Primary systemic cancer sites varied. Patients were monitored clinically and radiographically. With neuroimaging evidence of local recurrence or new distant metastasis, further treatment was administered at the physician's discretion. By the median follow-up evaluation (12 months), the local tumor control rate was 96%. Distant metastases occurred in three patients within 3 months, suggesting synchronous metastasis, and in six patients more than 3 months after treatment, indicating metachronous metastasis. Treatment in these cases included radiosurgery in seven patients, WBRT in two, and resection together with 125I seed placement in one. Two patients who suffered radiation necrosis required operative intervention (lesion diameter > 3 cm, total activity > 40 mCi). All 26 patients who had been treated using resection and placement of 125I seeds had a stable or an improved Karnofsky Performance Scale score. At the last review, nine of 16 living patients showed no evidence of treatment failure. The median actuarial survival rate was 17.8 months (Kaplan-Meier method). CONCLUSIONS: Permanent 125I brachytherapy applied at the initial operation without WBRT provided excellent local tumor control. Local control and patient survival rates were at least as good as those reported for resection combined with WBRT. Although the authors noted a higher incidence of distant metastases compared with that reported in other studies of initial WBRT, these metastases were generally well controlled with a combination of surgery, stereotactic radiosurgery, and, less often, WBRT. Twenty-four patients (92%) never required WBRT, thus avoiding potential long-term radiation-induced neurotoxicity.
PMID: 17608356 [

[alicem]

Hi Brenda,

I just wanted to let you know that I have been thinking of you and saying a prayer for you every night. I hope you get some good news and a good plan on Monday. Call me if you need someone to talk tol I'm a pretty good listener. I think you have my phone number, or else just pm me.

Once again, thank goodness for all of the "smarts" here at the forum!

Love, Alice

[hutchibk]

I will know more tomorrow, but these two little critters are right smack in the middle of the brain, and I don't think are "resectable"...

The other problem is that it seems that the brain is "seeded" at this point, and they just keep hanging out until they are big enough to see on MRI. The ones that we have already targeted are gone daddy gone, so I don't know that I need a new type of machine to get them, like Cyber as opposed to IMRT because IMRT is working magnificently...

I think it's a matter of deciding how to kill the seeds...

I will know more tomorrow. Thanks all. Keep posting Lani! Every little bit helps.

[Lani]

I would make sure you know the difference between IMRT and Cyber and gamma knife. As I understand it, and I can be quite wrong let me say, IMRT is just applying different software instructions to external radiation therapy in order to better shape the beam to put more where you want it and less where you don't. Cyber and Gamma knife are more pinpoint acccurate in my understanding. This may become important if you don't want areas affected that might be part of your "noggin" and to keep areas amenable to other treatments eg, radioactive iodine in the future if needed.
Again, I might be wrong, but I would certainly seek out knowledgeable,experienced and specialized radiation therapists. I was shocked to find out that radiation therapy MDs at UCLA are expected to treat ALL kinds of tumors, whereas those at Stanford are pretty much all specialized to treat one or two kinds
You can imagine the difference in their expertise let alone their ability to advise one kind of treatment vs another based on experience. I was told it is because UCLA is very short of radiation therapy MDs. Try to find out all you can about the department you think might treat you and you might want to get several opinions.

[hutchibk]

OK, so here is what I learned today:

I have a 1cm tumor sitting in the sella turcica (gesundheit) pushing on the pituitary gland, and a 6mm one directly above it, sitting next to the sella/pituitary stem, pushing on the optic chiasm of the optic nerves. There is no edema around either one, but it sounds like they are a bit complicated when it comes to treatment. Crap.

He says they are fairly slow growing. We went back to Nov 08 and didn't see them, but could see them barely (in retrospect) on the March 09 pictures, and then a little bit more on the June 09 pictures and of course, more enhanced on last weeks pics.

I guess this might explain some of my weird symptoms the last 3 months... excessive thirst (electrolyte imbalance?), mild appetite, mild mental fogginess - all due to a pissed off pituitary gland, and mild eyesight blurriness - due to a pissed off optic nerve.

Surgery is not possible because of the danger around the optic nerve, and resulting blindness.

Targeted rads (IMRT/Cyber/Gamma) are not possible because of the same danger.

If it weren't for the little one, we could probaby remove the pituitary one surgically with minor problem, but they are so close together that he really impressed on me that that would be risky.

He is very keen to the idea of not painting us into any corners, wanting to leave as many options open for future treatments that might be needed. We talked about two radiation options today but I need to talk to him again tomorrow to get more clarification of them.

We scheduled my PET for Weds to be absolutely certain that there is nothing new in the body. He needs that info to drill it down and help him decide on one of two options.

[Lani]

Could a needle biopsy be done through the nose?

From my reading, pituitary tumors are accessible through the nose. I would surmised (again I could be entirely wrong) only a tiny sample is necessary to test for Na/I symporter (and since ~80% of her2+ mets were positive for Na/I symporter) it would seem to be the safest way to treat your tumors with radioactivity without risking your pituitary or optical chiasm or other important structures. {{Again, this is pure supposition on my part (science fiction, if you will). I have no idea if this is practical, doable, or more likely to be beneficial than harmful. I don't know whether it is something you would want to save up as one last attempt if other treatments aren't as effective as you would like, or something that should be attempted now to protect your vision. I have no qualifications to make my opinion worth anything--having just read a lot of the medical literature and had an active imagination.}}

Otherwise, it would seem your chances of treating this with radiation are too risky and then you are into the realm of "what crosses the blood-brain barrier" or "what can be given intrathecally"?

Stanford is home to one of (what was when I last checked) four MRT machines in the world, which allow biopsies and other surgeries to be done with special instruments while an MRI shows them where they are going.

Normally MRIs cannot be done while operating because of the metal instruments and because they are generally closed cylinders without adequate access or "open MRIs" with poor resolution.

Seems like you might be wanting to check out whether this is just science fiction ie, whether they would still consider you for radioactive iodine teatment and that may involve consulting with neurosurgeons and/or interventional radiologists to see if my understandings about the possibility of a minimally invasive biopsy are just musings or are practical possibilities.

When I last checked, the radiologist who runs the MRT program at Stanford is Dr. Bruce Daniels, who also is an expert in breast MRI.

Remember to check out my previous posts of articles on brain mets, including use of boswellia, intrathecal herceptin, etc.

Good luck!

[GemmaG]

Hi Brenda,
I agree with Marie my love.
Have had WBRT last year, a month after craniotomy. Had 20 treatments. It was the most difficult treatment for me (nauseated for 5 months or so). My hair didn't grow back :-( and....
But good news is, my Brain MRI's showed NED! But my memory sucks! I must have bright pink sticky memos everywhere my house to remember things.
I hope and pray that everything will do good. You are an amazing woman. Rest assured that I'll always be here anytime. We'll all be here for you. I will look forward to read your new post.

Hugs,
Gemma

[Darlene Denise]

Brenda: This sounds like maybe a case for Dr Keith Black at UCLA? At least maybe send your MRIs for their review? Surgical options should be discussed only with surgeons. No one onc or rad onc can be up to the minute on everything being done out there. I think consult with Stanford for Cyber, Loma Linda to see if Proton Beam can be used and UVA for Gamma use. Maybe Joe can help out with contacts as well.

Cast your net as wide as you can on this one!

Hoping for your best choice and outcome!!

x0x0x0Darlene

[alicem]

Brenda -

My first thoughts . . . WELL CRAP!!!

My second thoughts . . . THANK GOD FOR THE MEN AND WOMEN ON THIS FORUM.

What good advice you are getting, I am continually amazed and grateful for everyone here. Friends have asked me why I have been so calm about my cancer. First of all I feel blessed because it was caught early AND it was caught after Herceptin was available for me. Secondly, I look at all of you here on the forum as my secret weapon should I have a recurrence. It really does give me a tremendous sense of calm.

Brenda, let me know if you ever need someone to go to a doctor's appointment with you. I am a phone call away.


Love, Alice