MRI: Bad results

[Barbara H.]

Hi Everyone,
I had my routine MRI today, and then my oncologist had to leave for a weekend trip. He said that I would need to wait for my results until Monday, unless there was an issue. Well, unfortunately, the oncologist on call called me 10 minutes after I arrived home with the news that the the area (prefrontal coretex) where I had surgery in May 04 for brain mets shows a small area of regrowth since my last MRI. Stereotactic surgery is not an option because I had follow up stereotactic surgery to the area and apparently you can only radiate an area once. Needless to say, I am in shock, and angry. I am absolutely terrified of taking that Decadron again. I don't do well on it. I've been working out, have no symptoms and feel great. Herceptin put all my markers in the normal range and I was beginning to have hope. Even if I have surgery again I am worried about the fact that they can't mop up what's left. Any insights from those of you who have had recurrances to the same site would be appreciated. With the holidays coming up, I probably won't be able to see my surgeon for a while.
Thanks,
Barbara H.

[Gina]

First of all, keep focusing on exactly what you just said...you feel well, you have started working out, you are becoming more pro-active, plus, you are a valued participant in this support site, you are highly intelligent and have a strong inner intuition that has brought you though something that few people could ever even face...cancer somewhere in the brain for goodness sake in 2004...that is HUGE...something so scary, that even I would not have a clue how to manage it, but you did it. Your markers are down and at least appear to be under control. You, I assume, have regular access to the herceptin. It could be much worse, and you already know that because you have been there and done that and are not going back. Living with Her-2 is about moving forward...just it may seem a lot like what I call puddle jumping...I get myself out of one her-2 mess, just to jump right into another her-2 mud puddle...but somehow, as odd as it seems..., along the way, you get better at jumping..., you get better at shaking yourself off and climbing back out again, and you will climb out of this one too, really, you can and you will.

OK...here are some thoughts...first, if you have recently, say within the last 6 months or so switched from doing weekly herceptin to every 3 weeks, you might want to try to go back to weekly, just to see what happens...I KNOW oncs and researchers and pharmaceutical companies claim the herceptin does not cross the blood-brain barrier, but stubborn me, I am NOT convinced...plus, there is a lot to be said for constantly keeping the overall her-2 burden as low as possible. The reason to consider returning to the weekly herceptin in YOUR CASE only, is that when you have active disease as I have and perhaps as you do, the her-2 constantly increases over the period you are not taking it until..boom, you take the herceptin and the her-2 numbers are washed back down again. Now, this is just what I learned from my own many experiences (7) with recurrences. When you use weekly herceptin, you only have 6 days in between for the her-2 to go back up before whopping it down again. However, when you go three weeks, even though you are taking the higher dose of 6mg/kg you now have 20 days for the her-2 to edge up...remember, it doesn't have to edge up in your bio-chemistry much over normal to start causing little nasties somewhere..most especially in the place where you most recently had little nasties last..for you, that is your prefontal cortex and for many years for me..it was my liver...now it tends to recur more recently and frequently in one bone spot--again and again..oh joy.....so go figure..

Anyway, think back carefully to when you had your last tumor markers drawn in relation to when they gave you Herceptin. If they gave you herceptin say on a Friday, and pulled your markers the following week, the numbers may not have gone up to their highest point...remember in mets patients with active disease..the serum her-2 numbers are always rising unless herceptin, or something else (maybe oleic acid, for instance, or diet, or something) is knocking them back...and therefore your markers may have appeared within normal range but had they taken them JUST before your next scheduled herceptin, the numbers might have been a bit higher and told quite a different story..this is one reason lots of oncs rightfully do not like to go by markers at all as they feel the data is meaningless..and it can be, unless the numbers are pulled systematically on a regular basis and just prior to your regular herceptin dosing. So try to get back on Herceptin weekly first...before doing anything else invasive or drastic and give it 2 to 3 weeks at least and pull your numbers just before each Herceptin infusion to be sure you are getting a good picture of what may really be going on. Do every remedy you can think of to bring your numbers really low..you want the CA 27/29 to be under 10 and the serum her-2 about 7, if you can or as close as you can...it is amazing how just willing yourself to get the numbers down can sometimes help..I think it works like bio-feedback or positive imagery and we all know that of all cancers..any that are in the brain respond better to positive imagery than any others elsewhere in the body or so at least a couple of studies state. Anyway, these are all Her-2 - lite options to at least try soon..be positive...keep walking..keep working out..keep eating and sleeping well...you just may have to tweak it a bit... Instead of immediately jumping back on the decadron bandwagon..try increasing your vitamin D...acts on simlar cell receptors as the decadron and DOES cross the blood brain barrier..you can use extra sunlight or take some, but not more than 800 to 1000 IU of Vitamin D as in fish oil daily would be good. Try to get a formula, like Solgar's mixed with safflower oil...no soy oil fillers, though, just to be safe. Safflower has lots of oleic acid fyi. (but for D to work, remember you need plenty of vitamin A as retonic acid or palmitate--not just betacarotene...and for A to work, you need Zinc...read some of my other posts re: this stuff or email me at home if you are interested to learn more details. GPopp@Comcast.net .

OK OK...now, if less invasive measures don't seem to be regressing the bit of renewed growth, still do not panic. There are many ways to skin this cat and many women on this very site have beaten back brain stuff left and right and can advise you more specifically than I certainly can on many options, but I did want to share with you something to keep in on the back burner as a back-up fail safe option. I was recently working (a bit out of my her-2 area, it was a friend of a friend--you know how that goes) with a young 29- year old mother with glioblastoma who went to Duke and had a fascinating procedure where at the end of her brain surgery to remove what they could of the tumor, they poured in some substance designed to attach to any remaining cancer cells the surgery did not get and tag them (based on the similar bio-technology that created herceptin but uses a different target molecule). Then somehow something latches on to the remaining cancer molecules and takes them out afterwards...I apologize for not knowing more of the details..but it occurred to me...that if you are certain that the fast -growing cells in cortex are definitely over-expressing her-2...why couldn't you go to Duke and discuss the possibility of instead of dumping the glioblastoma specific target molecule in..why not just bathe the entire area with some liquid "brain-ready" form of Herceptin??? I am not sure this is possible, or if anyone else has even thought about this or if it is dangerous..I am sorry I really don't know, but what I do know, is that the woman with whom I was working, is doing incredibly well and her experience at Duke was beyond phenomenal as far as the staff was concerned...she also received quite a bit of alternative support. In fact, when Michelle, Christine, Audrey, Shoreh and I were at the Cure Conference in San Diego, they actually had the woman in charge of alternative supplements and nutrition at Duke give one of the workshops..it was very interesting and I was pleased that some of these more traditional teaching hospitals are becoming somewhat more open to wholistic alternatives and complimentary medicine.

Anyway, I feel really sad for your news, but for as far as my eyes can see, there is ONLY infinite HOPE in your case, of that one factoid, I am completely certain. After the initial shock, you will get in gear and plow though this episode and climb out of the mud hole yet, again. It is no fun, but it beats just lying there having your face rubbed in it...smile...

Please, please take care,
Gina

[al from Canada]

Dear Barbara,

I'm very very sorry this had to happen to you. Life really sucks some times!!!
Here's what I would suggest to linda if this happened to her (God forbid):
1. get on the phone and make about 45 phone calls to various clinics, hospitals, etc (LA, Dana faber, MD Anderson, U of Philly, Cleveland BC centre, Cancer centres of America, Mount Sinani.......) and get some interest going in your case. I know that I had 4 hospitals in the states ALL have case conferences oon Linda's case within 24 HOURS AND WE LIVE IN CANADA. It's time to consider clinical trials: http://www.clinicaltrials.gov/ct/gui/show/NCT00098605
http://www.clinicaltrials.gov/ct/gui/show/NCT00098605

All from our clinical trial page.
Probably most important is for you to snag an advocate and get them to go with you to your appointments and make your phone calls as you are probably too rattled to remeber a lot of the conversations.

The biggest issue: DON'T PANIC!! We've come a long way. BE POSITIVE, you will beat this on your terms, just research them and hunt them down, take no prisoners. This isn't a time to panic, it's time to do homework.

You are without symptoms so the urgency isn't there yet. Also, let's reach-ouyt to our brain mets friends on the Board to help with your course of action. This may not be the thing you can do alone so it is very important to get your advocate and move forward.
I'm sure that all of us will be praying for you as well.
Hang in,
Al and Linda

[lu ann]

Dear Barbara, I'm very sorry you are going through this. The above posts have given you many options. I'm not familiar with the other hospitals Al mentioned, but Cancer Treatment Centers of America has a Tomotherepy Radiation unit that is used on areas that cannot be radiated by traditional methods. Their phone no. is 800-577-1255 or you can check their web. at cancercenter.com. They will provide transportation for you and a travel companion to come to their facility for a second opinion. I went to their hospital in Zion, Illinois which is just north of Chicago. I went for a second opinion and stayed for 6 weeks. The care I received there was unmatched by anywhere I have ever been. If you would like more info from me you can e-mail me at ludysmith@yahoo.com. Blessings, Lu Ann.

[Lolly]

Dear Barbara; You've had a big shock, the news we all dread. But you can get through this, we're here to help. Yes there seem to be options for you. Something to ask about may be Cyberknife treatment. Here's some info on this method of precise radiation that I took off the Brain Metastasis page from this site (Go to Index, go to Brain Metastasis, go to Cyberknife:


"Lesions that have previously undergone the maximum allowed dose of radiation can be treated"


CyberKnife



How Does it Work?
The CyberKnife uses a miniature linear accelerator (LINAC) mounted on a robotic arm to deliver concentrated beams of radiation to the targeted tumor from multiple positions and angles. Through the use of image guidance cameras similar to those used for cruise missile guidance, the CyberKnife system locates the position of the tumor in the body and uses its robotic arm to deliver highly focused beams of radiation that converge at the tumor. Thus, the tumor receives a cumulative dose of radiation high enough to control or kill the tumor cells while minimizing radiation exposure to surrounding healthy tissue. The CyberKnife is the only system available which can also compensate for patient movement to ensure highly accurate delivery of radiation during treatment.

Because of its high precision and accuracy, the CyberKnife at Georgetown can non-invasively achieve a surgical-like outcome for lesions of the brain and spine. The CyberKnife is the first and only commercial application of robotic stereotactic radiosurgery for the spine and the spinal cord.

The patient lies on a table and wears a custom-fit mesh facemask or body immobilizer while the robotic arm (http://www.serverlogic3.com/lm/rtl3.asp?si=24&k=robotic%20arm) delivers the radiation. Most treatments typically last about an hour per lesion, after which the patient can get up and go home the same day. Patients being treated for extracranial tumors or lesions may need to undergo placement of fiducials, or "markers" near the tumor, prior to treatment.

How is CyberKnife System Different from Other Stereotactic Radiosurgery Systems?
The CyberKnife system uses the combination of a robotics and image guidance to deliver concentrated and accurate beams of radiation to intracranial and extracranial targets, many of which are inoperable. The robotic arm is highly flexible, allowing access to tumors in difficult-to-reach locations.

The CyberKnife, unlike other stereotactic radiosurgery systems, is able to locate the position of the tumor without the use of an invasive stereotactic head frame or stereotactic body frame. The CyberKnife system compensates for patient movement during treatment, constantly ensuring accurate targeting.

The Benefits of CyberKnife
Because the CyberKnife is non-invasive,it has significantly fewer complications than traditional open surgery and can often achieve comparable or better outcomes.

Other benefits to the patient may include:

<LI class=MsoNormal style="COLOR: #333333; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto; mso-list: l1 level1 lfo1; tab-stops: list .5in">Radiation beams may be adjusted to avoid critical organs <LI class=MsoNormal style="COLOR: #333333; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto; mso-list: l1 level1 lfo1; tab-stops: list .5in">Dosage distributions adjusted to minimize radiation exposure to surrounding healthy tissue <LI class=MsoNormal style="COLOR: #333333; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto; mso-list: l1 level1 lfo1; tab-stops: list .5in">Treatment of lesions untreatable by open surgery or other radiosurgical systems <LI class=MsoNormal style="COLOR: #333333; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto; mso-list: l1 level1 lfo1; tab-stops: list .5in">Lesions that have previously undergone the maximum allowed dose of radiation can be treated <LI class=MsoNormal style="COLOR: #333333; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto; mso-list: l1 level1 lfo1; tab-stops: list .5in">Improved comfort due to the elimination of the invasive head frame <LI class=MsoNormal style="COLOR: #333333; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto; mso-list: l1 level1 lfo1; tab-stops: list .5in">Less pain <LI class=MsoNormal style="COLOR: #333333; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto; mso-list: l1 level1 lfo1; tab-stops: list .5in">No blood loss <LI class=MsoNormal style="COLOR: #333333; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto; mso-list: l1 level1 lfo1; tab-stops: list .5in">No scalpel <LI class=MsoNormal style="COLOR: #333333; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto; mso-list: l1 level1 lfo1; tab-stops: list .5in">No sedation during treatment <LI class=MsoNormal style="COLOR: #333333; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto; mso-list: l1 level1 lfo1; tab-stops: list .5in">No recovery time, usually performed as an out-patient procedure
Lower risk/fewer complications than traditional open surgery
What will the CyberKnife Treat?
The following are some of the conditions that will be treated by CyberKnife at Georgetown:

<LI class=MsoNormal style="COLOR: #333333; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto; mso-list: l0 level1 lfo2; tab-stops: list .5in">Intracranial tumors and lesions <LI class=MsoNormal style="COLOR: #333333; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto; mso-list: l0 level1 lfo2; tab-stops: list .5in">Extracranial tumors and lesions <LI class=MsoNormal style="COLOR: #333333; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto; mso-list: l0 level1 lfo2; tab-stops: list .5in">Spine cancer and spinal cord tumors <LI class=MsoNormal style="COLOR: #333333; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto; mso-list: l0 level1 lfo2; tab-stops: list .5in">Malignant tumors (primary & metastases) <LI class=MsoNormal style="COLOR: #333333; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto; mso-list: l0 level1 lfo2; tab-stops: list .5in">Benign Tumors <LI class=MsoNormal style="COLOR: #333333; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto; mso-list: l0 level1 lfo2; tab-stops: list .5in">Acoustic Neuromas <LI class=MsoNormal style="COLOR: #333333; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto; mso-list: l0 level1 lfo2; tab-stops: list .5in">Schwannomas <LI class=MsoNormal style="COLOR: #333333; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto; mso-list: l0 level1 lfo2; tab-stops: list .5in">Meningiomas <LI class=MsoNormal style="COLOR: #333333; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto; mso-list: l0 level1 lfo2; tab-stops: list .5in">Pituitary Adenomas <LI class=MsoNormal style="COLOR: #333333; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto; mso-list: l0 level1 lfo2; tab-stops: list .5in">Arterial Venous Malformations
Functional Disorders (Trigeminal Neuralgia)
New Soft Tumor Treatment for CyberKnife - Called Synchrony
Two years after its installation, Georgetown’s CyberKnife continues to prove its mettle and versatility in battling hard-to-treat tumors and lesions. While two-thirds of cases involve the central nervous system – the original focus for the stereotactic radiosurgical device – Georgetown’s physicians and researchers are also among the most experienced in the world at using CyberKnife to ablate soft-tissue tumors, treating more than 50 lung, pancreas and liver lesions to date. But because such tumors may move with the patient’s every breath, they pose special operational challenges.

Enter Synchrony Software , CyberKnife’s latest advancement and, according to manufacturer Accuray, the first technology in the world capable of accurately delivering dynamic radiosurgery to tumors that are affected by the respiratory cycle. As such, it is particularly well suited for use with lung, liver, kidney and pancreatic tumors.

Synchrony uses a complex system of cameras, motion tracking software, fiber optic sensing technology, infrared emitters and a special formfitting, highly elastic patient garment to do its job. In conjunction with CyberKnife, the system identifies, updates and then correlates external body surface movement with movement of the internal tumor fiducials. Throughout the procedure, Synchrony is monitoring the target and readjusting its calibrations to assure that it is locked on the tumor. The result is that physicians know exactly where the tumor is in real time, and can use maximum radiation without fear of harming surrounding healthy tissues.

While treatment by traditional radiotherapy can be effective, it is also limited and associated with serious side effects – a particular concern with lung cancer patients who already have compromised health and diminished capacity due to years of smoking. By contrast, Synchrony reduces radiation "scatter," allowing for ablative tumor doses with much improved toxicity. It is also faster and more accurate, making it easier on the patient.

Lung cancer treatment with Synchrony is a team effort, relying upon the expertise and experience of a thoracic surgeon, radiation oncologist and physicist. Prior to the procedure, the patient undergoes a series of tests and measurements to allow the team to plot out the most appropriate treatment plan. Treatment usually requires three sessions of one to two hours each, spread out over the course of two weeks.

[Barbara H.]

Thank you for your quick reply to my post. I have an appointment next Friday with Peter Black at the Brigham in Boston. My oncologist will be back in town on Monday and that will give me time to discuss the ideas that many of you have suggested. Surgery doesn't make sense to me unless I can have some sort of radiation or chemo to mop up the cells. I will ask about the lapatinap trial as a possibility.

If anyone has any more ideas I would love to hear them. Gina, I have to understand exactly what I need to do with vitamin A, and D, exactly the dose, what brand? I am taking zinc because I have a cold. Are you saying that it could get rid of the brain mets? I have always had herceptin every 3 weeks. My markers are drawn before herceptin. The last time I looked my CA 27-29 was 17. I guess you consider that too high although it's in the normal range. The CEA hovers around .3-.5. Dana Farber does not give the HER2 serum test.

Again, I thank everyone for their encouragement.
Barbara

[pattyz]

Barbara,
In addition to the previous suggestions/options: You may or may not know that I have had some response from Temodar/Xeloda for my recurrent brain mets. After two rnds the MRi showed nearly 50% shrinkage of a number of my lesions.

I had also posted information on chemos used for brain mets a while back. Am sure it can be called up using the search box.

Since I have 'safely' used up rads and surgery is not an option, this is a last ditch approach to be sure. There is no way to know how much more nor how long of a response I will have. But I am VERY grateful for the response so far.

hugs,
pattyz
p.s. My CA27-29 has been coming back in the teens ever since I became NED in body...but have continued to have brain mets.

[mamacze]

Dear Barbara,
You must feel overwhelmed with the reoccurance and confusion as to what to do next. But you are level headed; collect all the information you can get your hands on then decided on a course of action. I have no practical information to offer you other than to say I will fold you in the arms of my prayers tonight and ask God to give you peace and a clear thinking mind.
Love Kim from CT

[Kim in CA]

Dear Barbara,


You have gotten some good information from the folks here and I pray that you will find be able to sort through things and find the one that will work for you. Just wanted to send prayers and encouragement your way.

Love, Kim in CA