Scan Results - Another Battle

[Lori R]

Hi gang,
I am very disappointed to inform you that I have another liver met. I was SOOOO hoping that I would be a one person testimonial for cryotherapy. The Drs told me it was not a cure but as you all know, deep down I was hoping to be the one that proved them wrong.

The good news is that the cancer remains in the left lobe (site of my earlier met) and also remains as a single tumor. Also good news that the cancer has not spread to any other site (or at least that we are aware of).

I just need a little feedback...the current thinking is that we will go back to see if the tumor is in a location (keeping my fingers crossed) where I can blast the little bugger with another round of cryo..then follow up with Navelbine.

The good thing is that this would be relatively low impact and would hopefully allow me a quiet year to get my daughter out of high school.

Am I crazy for not trying to jump into a T-DM1 trial? I asked about a Herceptin+Tykerb monotherapy program but was informed by my Onc that she didn't think insurance would pay and warned me that Tykerb was not a walk in the park and could be more disruptive than Navelbine. My Dr. is very much a standard care kind of doc...she was saying the Herceptin+Tykerb does not have data to support it.

As you know.....this would be my 3rd round of chemo. They all have been manageable but I feel like I am being put on a highway with no exits. Unless of course, I decide to careen through the median, which I just might do next time this pops up.

KKI If you read this.....should I pound the pavement for a liver resection? Would you please PM me with who performed your resection? I am being told that in the Denver area, there isn't a surgeon that would perform a resection on a Stage IV BC mets patient.

It's been an emotional day and I am very tired. I can't tell if I am being too lax about going with the flow or whether Navelbine really is a good option that I should try before using something more drastic.

I would appreciate feedback and thoughts from the only people I know that have walked in my shoes.

Hugs to you all....Lori

[Faith in Him]

Lori,

Uggh. I wish better news for you. I don't know much about liver mets but I think others have had good results from Navelbine for
them. It may keep things under control until the T-DM1 trial.

Sending you prayers tonight.

Tonya

[ElaineM]

I don't have any great ideas, except to keep searching and keeping looking for what you need. Take good care of yourself and keep putting one foot in front of the other. I wonder if milk thistle would help prevent more mets from forming?

[Ellie F]

Hi Lori
Didn't want to hear this news as had been hoping that you would remain NED.I guess on a positive note it seems to be the same nuisance met that keeps coming back! Damn it!
Don't have any advice but wondered about other local treatments and seemed to remember full of beans had used one.
As for liver resection I have a friend who had a liver met resected 4 years ago and it's not come back, she had a real fight on to get this done in the UK.
Thinking of you.
Ellie

[Pam P]

Lori - I can't suggest a best course for you, but want to give you my support and encouragement. Whatever tx you and your doc decide will be good - you have good options. I've had navelbine and it is very manageable. Pam

[tricia keegan]

Lori,

I'm sorry I can't help with your question but just wanted to say I'm sorry the news was'nt better for you. x

[jml]

So sorry you have to deal with this monster again.

I had a chemoembolization (with adriamyacin) to blast a lesion in my liver ~a month ago. The process was pretty straight forward and the procedure was much like having an angiogram. My scan results show good response, though not complete and we're going to repeat the procedure in 2 weeks, though this time considering using RFA.

I've had a long history with liver mets - since my primary dx 8 years ago. I battled multiple mets in the R lobe for a year, cleaned it up with chemo, but when a single lesion recurred & kept popping up, I had resection. Unfortunately, last October a new lesions popped up in my L lobe and now we're doing everything we can to beat that back.

There's also another procedure called SIRTEX where they use radioactive beads and inject them up in the the liver to block/kill the blood supply to the tumor.

hope this info is helpful and wishing you lots of luck~

[Lori R]

I am overwhelmed by the kind words, support and of course...the first hand knowledge that I knew I could count on. Thank you all!!!! I remain hopeful that with the right mix of treatments that I can be (dare I say it) cured.

JML...thank you for responding so quickly. Is there a reason that a resection was chosen instead of using RFA (or in my case cryotherapy) on the first pesky node in the right lobe? I do love the idea of just removing my left lobe as I can visualize the cancer being gone...but a resection is very invasive and I just can't imagine repeating a resection multiple times.
Who did you work with to identify a surgeon that would perform the procedure and what type of analysis went into chosing a resection over less invasive approaches?
I do have a call into my surgeon's office to see if they can direct me here in Denver. My onc has not been supportive of a resection.
In the meantime.....my Pet/CT is being reviewed by the interventional radiologist that performed the Cryo back in April of last year to see if this latest met is in a location that can be treated again.
I am fine with going through another cryo treatment as it was not bad (OK...freeky but not bad) I am more concerned about continuing to beat up my system with full on chemo. Seems to me that the ole body will just wear out.
JML...any additional insights about choices would be appreciated.

Thank you..thank you...from the bottom of my heart

[CourtneyL]

Lori - I am so sorry to hear about your new liver met. Sounds like you are getting some great advice and I hope you are able to blast it to oblivion.

I just wanted to add that there IS data supporting the Herceptin/Tykerb combo. It just came out at last year's San Antonio conference. I think Lani posted about it here. My onc is an outside the box thinker and he had me on the H/T combo well before the data came out. It did a great job for me for nearly a year. And my insurance DID approve the combo. If your insurance doesn't approve it, GSK has a program called "Tykerb Cares" whereby you can get it at a reduced price. If this is the treatment you want, go for it. It could be your magic bullet.

[jml]

Lori~
I was dx'd in 2002 - Stage IV with a single liver met that progressed to "innumerable,immeasureable" after failing Navelbine/Herceptin. After switching regimens & 49 weeks of treatment, we were able to get me to NED.
After a year of NED, a single lesion in my R lobe recurred. At the time my docs were all scattered-all private practice entities and the communication efforts between any/all was really challenging. I'm now at a major cancer center where communication between docs is immediate & often my clin onc/surg onc/IR have already discussed my scan results by the time I see them. It's so important to have them all on the same page to offer you guidance, so I hope you can find a solution that all of you are comfortable with.
Before switching to my new treatment center, I went to see an IR and we did do RFA in 1/05, but because of the location of the lesion-right next to main portal vein-the RFA was never going to be completely successful. So I had to continue on chemo in spite of the effort to try and erradicate the remaining tumor.
After that I switched to my new treatment center and was on/off chemo for that year trying to keep the lesion down (my surg onc followed along with my progress for that year) until finally in 12/05, the consensus was made that the lesion was recurring more rapidly and it was time it came out.
I think resection was the best option for my circumstances/location of the tumor, as none of the other therapies would have been curative. The R lobe has been clean ever since- though it did not grow back to full size.
The liver resection surgery is big stuff. I was in ICU for a night, then in hospital for 4 days. Going into the surgery I was very fit and strong, but it still took a full month of recovery.The belly incision was pretty painful and slow to heal because I was up and moving around too much and today the scar is pretty substantial. My surg onc says ~4 weeks to regenerate, then 4 weeks to re-integrate with other lobe.
Once I was all healed up, I felt great- back to normal.
My battle since then has been with recurrences to nodes in chest, belly, supraclav, and since last October the L lobe of my liver.
I'm scheduled to repeat chemoembo or RFA next week, as our goal now is to decrease the tumor load in my body as much as we can, however we can, and then get a hold of TDM1 to clean up the disease outside my liver.
I dream of NED...

I believe full of beans had chemoembo to her liver 3x a number of years back, very successfully and she's been NED in the liver ever since.

I truly hope that you and your team of docs can agree on the best treatment approach for you together. Trying to manage all those diff doc's opinions/consults is exhausting and it is such a relief when your doctor says "I've already spoke with the surgeon about your scans and here's what we think..."
Please keep us posted and know that our prayers and strength are with you~

Keep the Faith

Jessica

[Chelee]

Lori, So sorry to hear the cryo didn't take care of all the mets as planned. I can only imagine the disappointment..but at least your gearing up for the next plan of attack. You have gotten some good feedback here. As Courtney mentioned there is now studies backing up the Tykerb/Herceptin combo...came out at this last ASCO conference. In fact I spoke with Dr. Slamon briefly about it at my last appt.

As to the Navelbine I know "mamacze" (Kim) from this board had liver and lung mets back in 2005. She did Navelbine/Herceptin and has been NED since then. :) So I know Kim had fantastic results with Navelbine if you want to PM her. I did Navelbine and can tell you from personal experience it is easily tolerated if you decided on that. Hang in there...with all the good feedback your gathering...your met doesn't stand a chance!

Chelee

[PatE]

Hi Lori,
I also had a liver met, it was treated by Cyberknife in August 08 and I have been NED in liver ever since. I had 3 treatments lasted about 45 minutes each, I felt no pain actually felt nothing at all. The only side effect was nausea once but I ate a cookie right after treatment so my fault!

I have been on Herceptin since August 2008, but in July of 2009 my muga scans started dropping so they stopped Herceptin. I was off Herceptin for 4 months, then my Pet showed a spot on the spine (L2). Again I opted for Cyberknife, I was just treated in May so won't have another scan until August. My Onc didn't recommend any treatment to the spine but I wasn't comfortable just letting it sit there and possibly grow/spread.

I think you have to follow your instincts, I agree that Herceptin/Tykerb combo has received positive response. The one thing I have learned since beginning this BC journey is that I have to fight for myself and if the doctors aren't aggressive enough then find one who is. I really can't say enough good things about the Cyberknife, its an amazing machine and I think it could change the way cancer is treated in the future. It has been a blessing for me. By the way, since my last CK treatment, I feel fantastic so I believe with all my heart that I am NED again.
I now take Herceptin weekly and my echos are in the 50s.
Blessings to you, I know you will overcome this too so hang in there.
Pat

[Rich66]

Some liver met info here,:
http://her2support.org/vbulletin/showthread.php?p=221053#post221053
If chemo is being considered, there is some research there about using Cytoxan during cryo to modulate the immune system to "unmask" an antimetastatic effect.

If you end up going in, maybe taking a tumor sample and testing it for chemosensitivity would be helpful and more informed than guessing about what chemo to use.

Regarding surgery, has lobectomy been considered?

Mom just had a cryo consult and was told benefits of local therapies drop after 3 cm. But cryo does allow for more probes..allowing bigger tumors to be treated.

[Lori R]

Thank you all so much, due to your input I feel so much stronger (fiesty might be another word) and able to push for myself.

So...here is what I am thinking...

#1 Cryo - I will receive the feedback from the IR next week. If he is able to freeze I will do a repeat of Cryo. I am continuing to investigate surgeons in Denver so I can have that option in my hip pocket. This may lead me to changing practices to a more University based practice. There is the article Rich provided regarding the use of the equipment to eradicate via electricity. Might be an option as well.

#2. Cryo + chemo - Rich thank you for the heads up regarding the combination of the cytoxin "booster" to possibly assist with the perceived immune system boost generated by Cryo. I will definately ask the IR about this approach. I am all for stimulating my own immune system. Of course, I have no idea if the earlier cryo assisted in that regard and may have prevented further spread of the disease.

#3. Chemo ...UGH....Ugh. This is where I get very fuzzy. Rich..I like your idea of getting further testing to see which chemo would be best. Not quite certain how to do that. I will need to search the board for locations. Again...I'll ask my onc and if no help, that is yet another reason to move to a new practice.

#4 Immune System - Courtney...I will PM you about the U of W vaccine. I was wondering if it would make sense to get the cryo which is supposed to generate an immune response and then at the right time, slip in some super charged T-Cells. Out of the box so the U of W folks might not be interested.

#5..Circulating Tumor Cells...I had a CTC run about 8 months and was relieved to receive a score of 0. The test, however, was performed after cryo and a few rounds of Abraxane. I had the CTC run this week to determine if it is a good marker. I will keep everyone posted just as an FYI on CTCs.

I guess that is it for now....headed down to Colorado Springs to spend time with my younger sister and her family who are visiting. So...I am checking out of cancer research for the next 3 days!!!! Yahooooooo!!!!

Lots of hugs....I will keep you posted. I SOOO want to beat this and be able to provide support to other Liver Mets gals about their options.

[Rich66]

Info on chemosensitivity testing HERE (http://her2support.org/vbulletin/showthread.php?p=222355#post222355)

[Sheila]

Lori, never the news we want to get...stay strong, stay ppositive...and I agree with Pam, navelbine was not a bad drug at all...wished it worked longer on me!

[Joan M]

Lori,

Sorry to hear about the liver recurrence after the cryoablation. But it seems like you're developing a plan to handle it. Perhaps you can check out radiofrequency ablation, even though I know you mentioned that the IR doc had recommended cryo instead.

Let us know.

Joan