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CT/PET scan results & the beginnings of a new plan: radioembolism

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Well, I had one of those long deep heart-to-heart meetings with my chemo oncologist yesterday to review Monday's CT/PET scan results and try and come up with a new strategy. The GOOD news of the scan is that the cancer hasn't invaded any new organs. The bad news is that my liver mets have really taken off in the last 2 months and it looks like at least half of my liver is involved now. It was hard to look at the scan pictures as we scrolled through, with the scan from 2 months ago, side-by-side, and see how much my cancer has grown in just 2 months even though I was on Avastin/Cytoxin all that time. We reviewed the chemo drugs I haven't had yet. Most of the approved endometrial cancer drugs left to me are older ones that they don't use unless they have to because they are too harsh or less effective; and the rest of my "targeted inhibitor" options are all super new and reletively unproven for uterine cancer. And we frankly agreed that my cancer appears to be completely chemo resistant. I made it clear that I want to have a nice summer and don't want to roll the dice on something that is going to make me sick and miserable and had less than a 30% chance of working.

I think we both know that it is time that I either throw in the towel and just enjoy the time I have left, or make a bold move. SOOOOOO, although my chemo oncologist has said, and said again yesterday, that radio frequency ablation was counter-indicated because I have more cancer outside of the liver, my husband kept pushing for it. So we got the liver surgeon and the interventional radiologist on speaker phone while we were there with my oncologist. Both opened my scan on their computers for the phone consultation. Both agreed that I had too wide-spread liver mets to do ablation. But the interventional radiologist (who is the surgeon that put in my port) said that he would see me next week to see if I am a candidate for radioembolism. He said that endometrial cancers are VERY receptive to radiation. They run a camera from your groin up an artery and into your liver first to see if you are a candidate for the procedure. If I am, he would do the embolism in 2 sessions 3 weeks apart. For the treatments, radioactive microspheres travel up that same path as the camera did and are shot into the liver. Microspheres is a relatively new treatment suitable for use even in patients with extensive liver involvement.  Radioactive spheres (SIR spheres or Therasphere) are injected into an artery in the liver. The spheres are like very tiny radioactive seeds. After they are injected through the liver artery, they travel into smaller arteries that feed the tumor.  Once the spheres are in the tumor, they give off radiation for about three days. The radioactivity causes damage to cancer cells with little damage to the healthy liver tissue.  It is a highly effective and well-tolerated regional treatment for extensive liver tumors.

Here's a link to learn about this exciting treatment:

http://www.sciencedaily.com/releases/2011/03/110328092409.htm?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+sciencedaily+%28ScienceDaily%3A+Latest+Science+News%29

Apparently, this is another treatment that insurance companies fight due to cost (about $80,000 a treatment), so insurance approval can take up to 60 days. Meanwhile, I am probably going to take a taxoxifen/megace pill regime, even though I am ER- and PR-, since a combo of the 2 of them has been known to work on a small percentage of ER-/PR- women for some unknown reason. & these pills are so easy to take; you still feel good and DOING something makes me feel better while I wait. My oncologist said that this interventional radiologist is VERY aggressive and does things he would personally never do, but also acknowledged that I am a very motivated patient, that over 90% of my overall cancer in my body is in my liver; and on that scale of overall health outside of cancer, I am still a "0" or a "1", which is the best rating.

I sooooo hope I am a candidate for this. This could buy me some time. Otherwise, with the speed my cancer is spreading, .......

Regardless, I plan to keep 'living large' and with joy each day! My grandkids are upstairs sleeping and we're coloring Easter eggs and going to see "Hop" this afternoon! Life is GOOD!

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

Linda,

Tamoxifen often has to be discontinued 10 days before a surgical procedure. Tamoxifen increases clotting. I'd ask my Doctor before the procedure.

Don't feel bad about killing the cancer even tough it is palliative. So was my hipec and it did give me time to orchestrate the wedding. And even now, there is no cancer in the lower part of the body; they are thinking hipec should be done early. I suspected that over a year ago. You can do this.
Love,
Diane

Pat51
Posts: 130
Joined: Feb 2011

I am glad to hear that you got approval from your insurance company for the procedure...finally an insurance company willing to do the right thing!! I hope that this is the beginning of your journey to NED. Keep us informed.

Pat

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Tommorrow I go in for the 'mapping', a sort of dry run of the radioembolism, but without the radioactive material. They will shoot some kind of dye up there and watch how it circulates through my liver and look for any shunts (openings) the cancer has created that lead outside the liver and measure for the coils they will need to use to plug those up. If any of the shunts are to large to safely plug up, then I am out for the radioembolism & can't have it, so tomorrow is a BIG DAY for me.

The manufacturer of the radioactive beads offered a CD on the radioembolism procedure on their website, so I emailed them to see if there was a CD on the mapping procedure. I got an very interesting email back from the SIR-Spheres plant in Australia, and we had a brief email exchange. What I wanted to share with you is this.

He said "Your question about clinical trials of SIR-Spheres in the treatment of liver metastases from uterine or ovarian cancer is a good question. In US the FDA has approved SIR-Spheres for the treatment of liver metastases from primary bowel cancer. However, in Europe, UK and other countries, SIR-Spheres are approved for the treatment of any type of liver cancer. This includes gynaecological cancers. We are certainly aiming to broaden the FDA approved indication of SIR-Spheres beyond just bowel cancer liver metastases. However, we have to complete a 2 large clinical trials in primary liver cancer (known as HCC) before we can move on to other forms of liver cancer such as ovarian and uterine liver metastases. I’m sure we will get there eventually."

So it is comforting to know that this procedure is being done in other parts of the world routinely for uterine cancers that have metastacized to the liver. So if you find yourself in this position (God forbid!) don't be too afraid to give it a try.

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I will be thinking and praying for you tomorrow as I sit in my chemo chair for day 2 of my 5th cycle. I hope everything works out that you will be a candidate for the radioembolism.

As usual you have an interesting note about clinical trials for gynecological cancers and go to the liver. Thank you for the information. You always teach us so much.

Sending you cyber hugs, and will be cyber holding your hand as you go through your mapping. In peace and caring.

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Hope mapping is finding all the right places and no danger zones!
Annie

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I'll write a longer post tomorrow when I'm not so beat. But I wanted to let you know that I had my "Mapping" today (hepatic angiography), and I AM an anatomic candidate for the radioembolism and have an appointment June 1st to do the right side of my liver!! I was in surgery about 2 hours this morning and they plugged up 10 small shunts with various coils to keep the radioactive beads I will get on June 1st enclosed within the liver. At the close of the surgery, they add a radioactive contrast and then I had to have a 40 minute special type of scan that follows the path of that radioactive contrast through my liver and to see what % leaks out of the liver. Acceptable for the treatment is 20% leakage; mine was only 7%. I had to stay in recovery for 5 hours flat in my back to be sure that the artery incision by my groin was closed.

It was a FASCINATING procedure, for which I was awake the whole time, and I have other todbits to share about the process. But I need to stretch out now. I'll post again tomorrow. Just wanted to say "YIPPEE!!"

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I am so happy that everything went well today and you are anotomically a candidate. That is such wonderful news. Your procedure sound very much like a cardiac catheterization, but they went to the liver instead of the heart. I think the laying flat on your back for 5 hours would be very hard to do, too. I hardly ever sleep on my back.

Putting in 10 shunts sounds like a lot. I guess that is because they want to keep the radioembolism beads only on the right side of the liver. Glad you had acceptable leakage for the treatment. Everything sound great, and you have a date ----- June 1st. I am so happy for you and wish you very much success with the treatment. I can't wait to hear more of your post. Celebrate each day until then. In peace and caring.

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

By now you would have had the mapping...

How did it go?

Laurie

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I had my mapping YESTERDAY, with an appointment for the SIR-Spheres for the right side of my liver on June 1st.  The 2-hour mapping surgery was fascinating, as I was wide awake for the whole thing.  I asked them to ‘go light’ on the stuff they give you to relax you (as I am a pin weight and usually am out cold if they give me any kind of sedative at all.)  You need to stay awake so that you can hold your breath when they need to have 100% stillness.  They use a local anesthetic to numb the area by your groin that they cut to insert the catheter (a narrow flexible tube) into your artery and then up into your liver.  I had 10 coils/torpedoes/vortexes (ranging in size from 2 mm to 6 mm) inserted into various shunts they uncovered during my mapping, and each time I was asked to hold my breath as they inserted a wire with the little coil on it.  The only way I knew the wires were moving in and out is that sometimes I could feel the interventional radiologist’s hand moving against my thigh as he threaded it in and out of the catheter tube already in there.

You can watch on the monitor and see what’s going on in your body, although I admit that I couldn’t really see all that good with my contacts out!  HA!  It was fascinating to see all the hundreds of ‘real time’ decisions the interventional radiologist had to make as he followed the path of my circulation on the monitor.  Throughout the procedure he was calling out to his assistants for what size and type of plugs he wanted attached to a wire next; and the assistants had to choose the right one from a HUGE assortment of possibilities, over and over.  Fifteen minutes before he estimated he wanted to close, he sent someone to get ‘nuclear medicine’ and someone else joined the team at the very end to administer some sort of radioactive contrast.  I have a Power Port for my chemo, so I assume it was administered through that tubing, but I couldn’t feel that.  I couldn’t really feel ANY pain or discomfort throughout. 

The long time in Recovery was a surprise for me: 4 to 5 hours lying flat on your back.  Someone came in as soon as I got in Recovery and applied a LOT of pressure on the incision and held it there for what seemed like 20 minutes, but it may have been less.  This is how they close the tiny wound, and it worked.  The drugs I got were so light that I wasn’t groggy enough to sleep and can’t sleep flat on my back anyway.  I’d brought a book, but they wouldn’t let me raise my head to read or have a drink or take a leak or anything.  Early in the recovery period hours, I was taken for a special scan that looks at where the radioactive contrast traveled outside the liver.  Each position of the ‘camera’ took 10 minutes, for a total of 40 minutes, so a LONG scan time, but at least it gave me some break in the boring 5 hours of recovery!  At this facility where I go, you have to have less than 20% of the contrast leak out of the liver to be considered a safe candidate for the SIRS-Spheres.  I had only 7% leakage, and they seemed very happy with that.  After 4 hours of lying flat I was slowing propped up in bed in increments and finally taken to a chair to sit for a half hour.  As soon as I could, I walked to the bathroom and could see that I was fine, not at all shaky or wobbly.  I ate a HUGE meal the second I got home, which made me a little uncomfortable for being such a piggy.  But I was ravenous!

So I am writing this “the day after”.  I feel fine, can’t even see ANY bruising at the incision site or anywhere else, at least not yet.  I have to leave the bandage on at least another day and take it a little easy today.  But by tomorrow I was okayed for normal activities.  No side effects: bowels, appetite, digestion, sleeping, all normal already!  I am thrilled to have this process underway!!  I look on this as a fascinating adventure and a glimpse into the world of a surgeon.

I’m to start on a prescription Prilosec immediately and take it 45 days, so that means I’ll be taking Prilosec before AND after the SIR-Spheres, to keep stomach acid down as stomach acid is counter-productive for the SIR-Sheres.  I was told that the day of the SIR-Spheres procedure I would start taking a prescription antibiotic for the next several weeks, and that I would be taking a steroid for 12 days following the insertion of the SIR-Spheres to combat fatigue and help with healing and nausea.  I hate steroids because they make me sleepless, but they insisted steroids were important, and I will do what I must do! 

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

Thanks for sharing the information. Sounds like quite a procedure, with more to come. Wishing you the best for the rest of the procedure. Hoping all goes well for you. I can understand your feelings about the steroids. I don't like how they make me feel, and expecially when you come down off the steroids. I know you will "do what you must". You always do, you are so strong and such a warrior. In peace and caring.

Cindy Bear
Posts: 570
Joined: Jul 2009

you are amazing. How you find the strength, the energy to keep going, and the time to share all of your valuable information with everyone else here. June 1st is right around the corner. I said that you were 10 ft tall and bulletproof... scratch that, you're 50 ft tall.. Hugs and prayers that all goes well.
Cindy

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