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-   -   Caryn next step - might be option for others (https://her2support.org/vbulletin/showthread.php?t=35694)

eric 09-22-2008 04:24 AM

Caryn next step - might be option for others
 
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 09-22-2008 05:37 AM

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 09-22-2008 10:44 AM

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 09-22-2008 11:05 AM

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 09-22-2008 11:17 AM

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

Mary Jo 09-22-2008 11:45 AM

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 09-22-2008 02:19 PM

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 09-22-2008 03:59 PM

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

Esther 09-26-2008 01:31 PM

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 09-26-2008 01:41 PM

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 09-26-2008 01:51 PM

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 09-26-2008 06:14 PM

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 09-26-2008 06:31 PM

eric
 
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 09-26-2008 06:50 PM

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

eric 09-27-2008 08:06 AM

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 09-27-2008 09:41 AM

Is this considered theraspheres or SIR Spheres

Rich66 09-27-2008 11:32 AM

Looks like cyberknife is at UPM:
http://www.upmc.com/Services/liver-c...s/default.aspx

Esther 09-27-2008 10:45 PM

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 09-28-2008 06:48 AM

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

eric 10-12-2008 03:18 PM

Caryn update
 
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 10-12-2008 04:25 PM

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 10-12-2008 04:51 PM

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

Kim

chrisy 10-12-2008 08:48 PM

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 11-06-2008 07:36 PM

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 11-06-2008 07:57 PM

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 11-06-2008 09:18 PM

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

jean

Mary Anne in TX 11-07-2008 06:26 AM

Just LOVE that GOOD NEWS!

Kim in DC 11-07-2008 06:39 AM

Eric,

That is great news! I love your persistance!

Kim

Joan M 11-07-2008 11:02 AM

Eric,

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

Joan

freyja 11-07-2008 11:14 AM

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

chrisy 11-07-2008 11:54 AM

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 11-07-2008 12:29 PM

Eric,

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

juanita 11-09-2008 04:55 PM

glad to hear that you got good news!

flynny 11-09-2008 05:08 PM

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

eric 11-20-2008 10:45 PM

Good news and not so good
 
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 11-21-2008 09:53 AM

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 11-21-2008 10:16 AM

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 11-21-2008 10:23 AM

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 11-21-2008 05:14 PM

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 11-21-2008 07:50 PM

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


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