Caryn next step - might be option for others

[eric]

Caryn has a single 7cm tumor on her liver. Since she's been ejected from 2 trials recently her Onc has finally agreed to have an RFA (radio frequency ablation) done to remove this stubborn spot. The spot is larger than the 5cm max preferred for an RFA and one end is resting on the portal vein. This is important since the RFA generates heat to kill the cancer cells and the portal vein will attract the heat and therefore limit the impact on the cancer cells. As a result, prior to the RFA, they are planning to surgically drop radioactive seeds in the tumor section by the vein. This should eliminate the section by the vein and hopefully shrink the tumor to the preferred size. Apparently, this "seed" step is used often for primary liver cancer but is new for bc liver mets. I'm not sure if it's considered a trial but I'm happy to have it as an option.

Eric

[WomanofSteel]

Eric, I hope your wife does well with this. I will keep my eyes open for your updates as I have multiple liver lesions the largest which was 10 cm that at last scan had gone down to a little over 7. Maybe it will be an option for many of us with these stubborn mets. Meanwhile I will pray that this is the magic she needs.

[chrisy]

Eric,that is very good to hear that they are willing to try this. It's so refreshing to see that people, when they put their minds to it, can get very creative. It sounds like a good plan. Please let us know how it goes. This has been an approach I've been keeping on the back burner, I'll be interested to hear how Caryn does.

Much love
Chris

[Kim in DC]

Eric,
That sounds like a very good plan. Thank you for sharing it with us. Where is this proceedure being done?

Kim

[Mary Anne in TX]

Eric, I send my prayers and good wishes for this to be super successful for Caryn. ma

[Mary Jo]

Hi Eric and Caryn,

I,too, send my prayers and ask God to please let this be a successful procedure for your wife.

Surrounding you both in prayer,

Mary Jo

[Jean]

Eric,
I too am happy to hear that this approach is open for Caryn....please do let us know how it goes...sending you
and Caryn my prayers.

Jean

[juanita]

i hope that everything goes okay for your wife. i'll add my prayers to the others.

[Esther]

Eric:

I had a lesion that was stubborn and resisted to chemo also, it was 4 cm. It was also by the hepatic artery so the cooling would make RFA innefective.

I ended up going to Stanford and had Cyberknife done on it, and that took care of the lesion.

So perhaps you might look into Cyberknife as well as an option.

[JustwannaBE]

Hi Eric. Since it is just one tumor, why can't they do a liver resection ? Also you may want to investigate another technology called SIRT's. Go to Aboutlivertumors.com and check out either the theraspheres or sir-spheres technology. I met with an interventional radiologist this week about it, however, I am going to go on a clinical trial right now, and can't be on any other treatment. If the clinical trial doesn't work, then I am going to have the sir-spheres radiation procedure done.

[Esther]

When the liver lesion is so close to a major blood source, surgery is not an option because the risk of bleeding is too great.

It is a trickier situation with less options when it is close to a major blood supply. The blood flow makes RFA ineffective due to the cooling effects, unless a combo of treatments is possible and re-section is too risky.

[eric]

Honestly, I don't know why cyberknife wasn't suggested. I didn't bring it up since I was concerned about the vein proximity but obviously that doesn't have to be an issue.

[Lani]

I think that Stanford is the only institution in the country using the cyberknife for prostate cancer. I believe it is the only institution in the country utilizing it for a number of new indications ie, things other than primary and metastatic tumors of the brain. I was happy to hear when Esther went there for treatment of her liver metastasis and was even happier to hear how well it went.

Perhaps you can find out more from Esther about how she arranged a consultation and if they know of anyone else doing something similar near you so you know all your options.

[DanaRT]

This sounds like a good plan. I am hopeful for your wife and will include her in my prayers.

[eric]

Lani - that's a good recommendation but since Caryn has already had the embolization and mapping and is scheduled on Thursday for the seeds, we're going to proceed as planned.
I'm happy that Stanford is pioneering this approach. The more strong options the better!
Thanks all,
Eric

[Rich66]

Is this considered theraspheres or SIR Spheres

[Rich66]

Looks like cyberknife is at UPM:
http://www.upmc.com/Services/liver-cancer-center/livercancertreatments/cyberknife/Pages/default.aspx

[Esther]

Very few Cyberknife facilities are certified to treat liver lesions. It requires specialized software, equipment and training. So while they may offer Cyberknife for other body locations, they aren't likely to offer it for liver lesions.

Because the liver fluctuates constantly due to blood flow it requires fiducials to be inserted around the lesion and the cyberknife uses them to calibrate constantly during the treatment to target only the lesion and spare healthy tissue.

I found it awesome that cyberknife was constantly adjusting to compensate for the movements of the liver due to blood flow.

Cyberknife is completely different from theraspheres or SIR spheres. It is a form of targeted SRS the same as what is used to treat brain lesions.

[jones7676]

It sounds like a wise decision to me...please keep us posted.

[eric]

The "sirt" went very well as the dr was extremely pleased with how the seeds settled in the most active part of the tumor. She had to deal with nausea, fatigue and some pain but the drugs have helped (even though she hates taking them since they come with their own side effects). Happily she's starting to feel like herself again and we met with the Onc last week who suggested that we let her body recover more before going onto another step. The plan is to do markers and then discuss chemo or the RFA. He (the Onc) feels like he's gotten a pretty good understanding of how her cancer acts and feels comfortable taking a little more time away from a systemic approach. I'll keep you advised.

Eric

[Joan M]

Eric,

I'm very happy that Caryn's procedure went well. Please let her know. It's great that you are exploring these other options. It makes sense since the tumor is in the liver and all chemos affect the liver.

Joan

[Kim in DC]

Eric,
I'm glad Caryn is doing well. Tell Caryn thanks for being a trailblazer for treatment options.

Kim

[chrisy]

Eric,

So glad to hear Caryn is feeling better and that the procedure went well. I hope she can continue to rest and recover so she will be well equipped to take the next step.

Take care
Chris

[eric]

To update you, Caryn's recovering very well and her tm's continue to drop (1500 to 1000 to 500). A PET/CT is being scheduled and the Onc is watching closely to determine when and what we do next. Seems to me that if we got the shrinkage we needed with the seeds, maybe we'll even do the RFA a bit earlier than planned.
I'll keep ya posted.
Eric

[Chelee]

Hi Eric, I'm glad to hear Caryn is recovering nicely. Thats great that her TM's have dropped that much already. It sounds like she has a good onc that is staying on top of things which is great. (Caryn is also so blessed to have you by her side & I'm sure she knows that.) :) Keep us updated.

Chelee

[Jean]

Eric,
Very happy to hear good news from you.
All good wishes,

jean

[Mary Anne in TX]

Just LOVE that GOOD NEWS!

[Kim in DC]

Eric,

That is great news! I love your persistance!

Kim

[Joan M]

Eric,

I continue to pray that Caryn's treatment will melt those mets.

Joan

[freyja]

Congratulations, I get the feeling she's really strong and healing.
Love, Celeste

[chrisy]

Thanks Eric,
I'm so glad that things are continuing, finally, to be moving in the right direction for Caryn. All my best wishes for the next step!

[Jackie07]

Eric,

Thanks for the great news. Caryn is very lucky to have you by her side.

[juanita]

glad to hear that you got good news!

[flynny]

What great news!! Tell her to keep up the good work. We are all behind her!

[eric]

Caryn had a scan and the good news is that the procedure seems to be doing what was intended to the single tumor. In the dr's words, while the radiation is still working the tumor is broken apart, smaller and less active. The not so good is that they found cancer in 3 lymph nodes next to the liver. It's back on chemo, mostly likely Taxol and Avastin. Caryn's most upset about losing her hair again.

[JustwannaBE]

Hi Eric: Thanks for posting the good and not so good news about Caryn. The chemo will knock that stuff right out of those lymph nodes, I know it will. Anyway, I posted on this thread back in September, and have since been on the clinical trial for my liver tumors, and it didn't work, so now we are going to Sir Spheres. I was wondering how Caryn was doing, so thanks again for the positive feedback. I have been on Taxol and it wasn't bad at all for me. I only had some bone pain with it for about a week, which I took vicodin for. After the week was up, I felt really good, however, I didn't take it with Avastin, I took it with Herceptin, but I am sure she will do good. Tell her there are many positive things about loosing our hair.....1) showers take less time and water 2) don't have to shave your legs or your arm pits - which is one of the best positives I think, I rather enjoyed that 3) don't have to blow dry your hair or style it.... The only bad thing was when it was cold, but I put on my ski hat for those times. I am bald again too, and this time, I am not wearing any cover ups when I go out, and I noticed that people really don't stare too much, and I decide to say f it, if they did. My husband says he is not embarrasssed to be seen with me without any head covering, as I ask everyone before going out in public if it would embarrass them before we go anywhere. Heck, if she is into it, get a tatoo on her head...someone mentioned that to me. Keep us posted and send my best to Caryn...she is a fighter and survior, and will get thru this with little problems. And you too are a great caregiver !!

[Mary Anne in TX]

Hi Eric and Caryn! I love the good news and darn the "gotta keep working on it" news! Hey Caryn, my hair has changed 4 times....very different each time. While others gave me "THE LOOK" and the "kind words of sympathy"...I really decided to just love it! Everytime the color changed, I'd just change the way it looked. Thank goodness for gels and mousse! Not much hair at times, but I had fun with whatever there was. You can do this, girl! Get mad and then go get ya a really cute hat for cold weather! Put those shoulders back and walk proud...you're putting the end to some really wicked guys trying to take charge of your body! Lots of luck and love, ma

[chrisy]

Eric, thanks for posting the latest update. It must be so disappointing having such success and then at the same time, a setback.

Last year before I went on the DM1 trial, I was gearing myself for another round of chemo. Although I tried to be positive about the hair thing, I was very very upset about it. I think only someone who has gone through it can understand, but sometimes I'm not so sure even I understand! Sure it's only hair, but for me it was a very in my face reminder that all was not well. Made it very hard to maintain the illusion that I was living a "normal" life.

In the end tho, Caryn is such a lover of life; she will push through - hair be dam^ed - and continue to fight. And be the beautiful person she is because beauty is in the heart, not on top of the head.

Love and hugs to you both.
Chris

[Joan M]

Eric,

I'm very happy that Caryn's liver tumor decreased in size and I hope that now that tumor is smaller the chemo can do a more effective job.

She's in my prayers.

Joan

[jones7676]

So glad to hear good news! Now, go chemo go.

[eric]

Thank you all for your thoughts and wishes. A special thank you to Joan who I hope knows how much her thoughts and consideration have recently meant.
Now that I've had a few days to process my perspective has changed slightly. While I'm very sad that Caryn has to potentially face losing her hair again (chrisy, you put it perfectly) and feeling like junk, I'm thankful for the little time off that she's had and the fact that she didn't have to suffer through treatment during our son's Bar Mitzvah celebration. I'm also going to raise the question about RFA for the nodes in addition to a systematic treatment. Additionally, I'm looking through trials that might be worth considering (in NJ this time, so they won't be as physically and emotionally taxing on Caryn).

Justwannabe, I'm glad to hear that you're in a position to take advantage of the Sir Spheres. It wasn't an easy procedure for Caryn but seems to be kicking the butt of this pesky tumor. I do believe that surgeon played a big role in the success and I hope and believe that you'll experience that same success.

Love to all, Eric

[mamacze]

It just warms my heart to hear how Caryn is still coming out ahead in her journey and how wonderful that she attended your son's Bar Mitzvah feeling well. How fortunate she has you helping her with the research especially when she is feeling under the weather. Warm warm wishes and cyber hugs to you both, this last round of chemo may be just the one-two punch those tiny tumors need - thank you so much for the updates Eric!
Kim from CT

[Rich66]

Any further thoughts on the Sir spheres experience?

[JustwannaBE]

Exactly a week ago, I went thru the maa mapping process and it wasn't too terrible. It was done as an outpatient, and they coiled off 12 blood vessels and that process took 2 1/2 hours. All together from the time I checked in and checked out, it took approx 7 1/2 hours. I was not sedated totally (forgot what they called it), but was awake as they tell you to take deep breaths during the procedure. I was given Versed, Phentenal & delaudid. I started getting really sick feeling when I was coming down, so they had to give me some zofran in my iv when I was put in recovery and they kept me there for 2 hours. The next 2 days I felt awful, like I had the flu and chemo at the same time, I took my vicodin and just layed around, and on the 3rd day, I started feeling better, and on the 4th day even better. I am a candidate for sir-spheres and will be having the procedure done on my right side next week, and I can't wait !! Then we will see what happens, and do my left side. I have learned, one step at a time.
Eric - how is Caryn doing ?

[eric]

Kim, reading your post warmed my heart...thanks

Rich, although one set of dr's was against the procedure I'm glad we did it. It really seems to be destroying a very stubborn tumor.

JustwannaBe- it took a while but Caryn recovered nicely from the procedure. The only real side effect that she dealt with for a while was fatigue and that's because the process keeps working for up to about 3 months. The fatigue wasn't bad, just there. Hope you find it even easier.

[Rich66]

On what grounds were they against it?
Also..any mention of intra-arterial chemo to the liver? I wonder if there is any conflict in getting IA chemo followed by spheres or the reverse order.

[eric]

A dr at Sloan was against it because of his belief to attack it systemically. He felt the studies confirming survival benefits of RFA were flawed and misleading. I, obviously, don't agree.
There was no discussion of intracranial chemo. I'm not familiar with it. Have you seen a lot of positive press on it?

[Rich66]

It's intra-arterial delivery of chemo, supposedly preferred by MD Anderson.
http://www.mdanderson.org/departments/ltsg/display.cfm?id=6193B52F-BC8D-11D4-80FB00508B603A14&pn=9DF6DAEE-7AAF-430F-8ADC4CAF62712136&method=displayfull


Regarding spheres, there does seem to be a double-talk amongst medical oncologists of the need to "reduce tumor burden" combined with the neglect of directed therapies that, at least intuitively, could help in that regard. I have, however, encountered interventional radiologists who seem to be open to combining the approaches. In other words, I don't get the impression that it has to be a local vs systemic equation.

[eric]

Interesting read from MD Anderson, thank you.

Fortunately, Caryn's Onc is one open to a combined approach. My feeling is the tumor in her liver was getting increasingly large and burdensome. By eliminating or minimizing that burden we expand treatment options and reduce the current urgency. At this time, I'm glad that we made the decision to move forward with it and I'm thankful to our local Onc and the very creative Radiologist.

[Rich66]

Is it your understanding that sir spheres is a one time treatment, albeit one lobe at a time? How is Caryn doing now?

[eric]

She's doing well recovering form the spheres and meets with the Radiologist early January. I'll have a better sense after that and will certainly let you know.