Not ready

[CoolBreeze]

I just realized, I have the fiducials inserted into my liver for the SBRT NEXT WEEk!! That is way too soon, somehow I thought June 7th was months away.

I have to call and remind them that the biopsy was extremely painful for me and I'll need something special for the insertion.

I skipped chemo today because it knocks my white count to nothing, .05, and I need all the immune system I can get for this.

Wish me luck I'll post about it if anybody is interested.

[Midwest Alice]

Good luck, sent up a prayer for you

[karen z]

Much luck and my thoughts and prayers are with you.
And you are right, June 7th can't really be next week.
Please keep all of us posted as all of us are interested.
k

[Barbara H.]

I will be thinking of you. These procedures are not fun.
Barbara H.

[NanaJoni]

Good luck with the procedure and hoping for minimal pain. Please post on how it goes - we're always interested and it may help someone who will have to go through the same thing.

[BonnieR]

Of course post about it. We are interested and we care about you
Keep the faith

[LoisLane]

Ann following every step of your journey. Keep us posted and let us know
how the procedures are going, healing thoughts going out to you!

[suzan w]

Good luck and all good vibes sent your way! Of course, keep us posted! We are family!!

[JennyB]

Good luck Ann look forward to hearing how it went.
I'm with you I can't quite believe its June in 2 days!!!
Hugs
Jenny

[Mary Anne in TX]

Of course we want to hear about whatever impacts you. Prayers for smart, smart doctors and nurses making this an easier experience for you. Prayers and love...

[Bunty]

All the best Ann. Please do post how you are doing, and of course your experience will be of benefit to some of us with liver mets.
Cheers Marie

[Mandamoo]

Good luck!

[Pamelamary]

Will be thinking of you next week - may it all go well and as easily as possible. Keep us posted; your story has been very important to many of us.
Love from Australia.... Pam

[Ellie F]

Thinking of you Ann and hoping and praying for a really good outcome
Ellie

[NEDenise]

Thinking of you, Ann!
Hoping for minimum pain and maximum benefit!
Fingers and toes crossed...
Keep us posted!
Denise

[dawny]

Best wishes Ann (try to steal some of the gold fiducials!)

Dawn xx

[jra40]

Good luck - praying for you!

[KirisMum]

Deep breath, honey. Thinking of you and sending hope and prayers. Kiri's liver biopsy was also incredibly painful because they hit her phrenic nerve. Tell them to go SLOW and be careful. ;-) all digits crossed here for stellar results!

[Jackie07]

Good luck Ann. We will all be praying for you.

[Hopeful]

I am not a frequent contributor to threads but I am a big reader of them and follow your (and our other members') progress regularly. Please, post and let us know how you do, and know you will be in my thoughts on June 7th. Best of luck to you with the procedure.

Hopeful

['lizbeth]

Anne,

I'm sure your liver will be just golden!

I'm with you on the pain, none, no thank you!

You are the first I've heard of to do this procedure. We will all be holding our breath to hear how your day goes and are keeping our fingers crossed that you will get rid of those pesky mets.

[ammebarb]

Sending my prayers and best wishes for a painless procedure and great success! I'll be thinking of you.

Barb A.

[KsGal]

Ann! My liver biopsy about made me jump out off the table. I don't know what it is that they use to "numb the area" with, but it sucks! My liver sure as heck wasnt numb. lol Tell them they better give you a twilight sleep or load you up on something good! Put a post-it note on your forehead that says..." need lots of pain meds" so they ALL know.
I've never known anyone who has had this procedure either, but as a liver mets sister, Im waiting right along with everyone else for you to update us after its over. Its brave people like you who open doorways for the rest of us! Lots of prayers and positive energy headed your way....its going to be a grand success.

[Laurel]

Anne,

Remember, "it is the squeeky wheel that gets the oil" so make a fuss so your pain is managed. You have been through enough to complain a bit here and there without fear of reproach.

Prayers for a simple and effective treatment!

[sassy]

Praying for you on all fronts! Keep us posted.

[IrvineFriend]

Ann,

You're in my prayers. You really have helped me through my journey and I want to thank you. I really admire you and the input and help that you give others.

-Julie

[3twins]

Prayers for no-pain and maximum results.

[Adriana Mangus]

Hi CoolBreeze,

I'm interested in hearing about everything you are going through.

Please keep us posted. This is it, it will work!!!

Love,

Adriana

[Soccermom]

Praying all goes well, Ann ! I'm always checking up in you so please keep us in mind .
XO Marcia

[CarolineC]

Ann,

Is there anyone you can talk to who has done the procedure and may have some good tips?

I know a woman who was diagnosed stage IV from the start six years ago with multiple liver mets. She takes alot of supplements along with something called Immunocal and there are no more mets. I am looking into taking it, but I don't drink dairy and I don't know if it will agree with me, so I'm on the fence right now. I think that is the key; to make your body as strong a possible. You have abit of time before your procedure to boost it abit.

Remember to keep the big picture in front of you. Your son's graduation and beyond.

Take care.

[SusanN]

Will be praying for peace, strength and wisdom...for all!! HUGS!!

[caya]

Good luck Ann - praying for an easy time for your procedure.

all the best
caya

[tricia keegan]

Keeping you in my thoughts and prayers Ann! xx

[Paula O]

I'm rooting for ya too! :)

Please do keep us posted,

Paula

[Mtngrl]

Good luck, Ann.

I hope it goes well and works beautifully.

[lkc Gumby]

although I have not had any hepatic procedure done, my mom had stents placed and reported significant pain.
PLEASE tell your surgeon , you want this to be PAIN FREE. They can medicate, but normally don't do so.

[Soccermom]

Thinking of you Ann!
Gentle hugs,
Marcia

[sarah]

Lots of luck, hope it's less painful than you expect and results are great, you've been through too much.
hugs and love
sarah

[CoolBreeze]

So ladies, thank you for all your kind words and well-wishes. Yesterday was my fiducial placement.

When I had the liver biopsy, I was not expecting any pain so when it hurt so badly, I nearly threw up and they had to give me IV Zofran. In everything I've done, that was the first medical procedure that had hurt and it really surprised me. I was relaxed and calm and suddenly felt like I was being stabbed.

So I was very apprehensive about repeating that experience, and this lasts a lot longer. When they do a biopsy, as you know, it's similar to a breast biopsy. They use the core needle gun and shoot it in your tumor and remove it immediately.

With this, they do many needles and have to leave them in while they take CT photos and make sure they are in the right place. They put needles in, take them out, make sure it's where they want it before they finally shoot the fiducial into you.

So I called them to tell them about my problems with pain the first time. I got a return call from a nurse who was horrible. Supercilious, rude, pretty much said "it is what it is and if you don't like it you can go somewhere else." Well, I called the doctor to complain and the doctor doing the test called me back. He asked me a bunch of questions about what kind of pain meds I'd gotten before, what my tolerance was, what I take now, etc. He said after 2 years of chemo that the tissue might be different and it might not be as painfulb ut he said he would do his best to control the pain and would add dilaudid to the versed and fentynl.

So, yesterday was the day. I was nervous. I was in pre-op and talked to the doctor again. They they took me to CT scan and did a scan with contrast, with my arms over my head (I *still* have a frozen shoulder problem so that wasn't easy). They left me in the machine, where they did the procedure so they could place needles, take pictures, see if everything was placed properly. And, I wish I could say that it was painless but that isn't the case. It hurt quite a bit at times, and honestly, I don't see how they can do it entirely pain-free. They need you awake because you have to hold your breath at specific times. it felt like he'd punctured my lung after one, I couldn't breathe in except shallowly.

At one point, they put this big needle in my liver that came out about 12 inches and then left to go look at photos on the computer and I'm lying there watching this needle above my head pinning me to the bed - I was like a butterfly pinned to a cork!

Anyway, it took about an hour and then I went to recovery. He wanted me to get to my "baseline" level of pain before I left but I'm not there yet still so that was foolish. Doctors! They wanted me there at least an hour and after an hour I knew I could walk so I said I was ready to go and they let me.

I came home and slept a few hours. Ate a bit of dinner, watched TV. Felt like I'd been kicked in the side by an elephant and couldn't take a deep breathe. This was annoying because my red cell count is low and I take in oxygen by deep breaths every few minutes! But I went to bed early and slept well and woke up today feeling like I was kicked by a horse. The breathing still hurts but is also better. So I think I will recover.

I don't want to do it again, I definitely don't. But it was not quite as bad as the biopsy, probably because of that tiny amount of dilaudid he added. I don't think versed and fentynl do anything to me at all, I've never felt them, never noticed them the three or four times I've been given it. If I do have to do it again, I'll either have him give me more or just take some of my own before I leave the house. :)

Next step is to let the fiducials "settle" or "scar in" and then I have a PET scan on the 17th. Then they will start the planning for the radiation, which will likely be at the end of June.

[Lien]

How did it go, Ann?

Hugs

Jacqueline

[Jackie07]

That sure was tough! Glad you 'survived' the procedure. Take it easy now. We are all rooting for you.

[michka]

CoolBreeze, I am so happy it is over. You are really courageous. My oncs explained the procedure in details and I thought I would never be able to do that. I am sorry you had to suffer.
Now they can shoot at the stupid met and it will never come back! Michka

[Paula O]

I'm so glad that procedure is behind you and hope it is very successful.

Cheering for ya,

Paula

[NEDenise]

Wow, Ann!
Another hurdle jumped...on to the next one!
Keep going strong...and thanks for taking the time to share the details...it's so important for those who follow to know what to expect.
Hope that horse morphs into a soft cuddly bunny next time it kicks!
Denise

[vballmom]

I'm so glad this step is behind you. I'm sorry that you had so much pain! I hope today you are already feeling better.

[lkc Gumby]

Congratulations on getting through this procedure. I Knew it would be painful, from my Mom's experience ( She said she would never have it done again too) But You did it, and now that's past. The soreness should resolve , but if you have continued difficulty breathing or shortness of breath, please let your doc know straight away.
As for the rude nurse, I am continually astounded by the lack of compassion in health care workers in the medical field towards patients that especially need gentle kindness. I truly hope and pray that you are now headed in the direction of a good and efficacious treatment plan.

[SusanN]

My prayers are with you beautiful girl...you are AMAZING...sending you HUGE HUGE HUGS!!! <3

[norkdo]

Praying for you, Ann. xo

[KsGal]

Hey Ann...just wanted you to know I was thinking about you this morning and sending prayers. Are you starting to feel any better?

[Patb]

Thinking of you and what you went through. I hope
each day is a little better and mainly that the procedure
works for you. Take care
patb

[KDR]

What hell! So glad this is behind you and wish you a peaceful recovery.

Karen

[ammebarb]

Thinking of you too, Ann, and keeping you in prayer.

Barb A.

[CoolBreeze]

Thank you ladies. I so appreciate your kindness.

Yes, today I am not hurting anymore and silly me, I spent the entire day cleaning out a room. My husband and son were using that spare room as their computer room and I decided that I wanted it back as my scrapbooking room, so I'm taking it over.

I took all their stuff out, picked up soda cans, found a bunch of missing spoons, cleaned up broken electronics, moved books, and started putting my scrap stuff away.

When the pain in my side starts,, I sit down. But I haven't had this kind of energy in years, probably because I'm so far out from chemo, so I wanted to do it while I can.

Tomorrow I have chemo again, darn. So there goes my energy. It was nice while it lasted! If this SBRT works and I can get off chemo for a while, my whole life can be like this again! Even though I know it won't last forever, it would be wonderful...... :)

[BonnieR]

My theory is that you should not waste a feel good day by cleaning!!! But if it gave you satisfaction....go for it
I just wanted to drop in and tell you how much I love and admire you.
As a former nurse, I am appalled at the way you were spoken to. I really hope there is someone in authority to whom you can complain and report her. She has no business in patient care
Meanwhile, keep keeping the faith

[Hopeful]

Ann,

I am glad you got the good day you had yesterday, and spent it in a way that was meaningful to you. I wish you the best of luck with your treatment plan and will be watching for updates from you.

Hopeful

[cheery]

Glad for your update and to hear your energy level's up, even for a day.

Quick question out of curiosity, I've just seen a radiation onco and he was telling me SBRT is non-invasive as it does not involve putting in probes. But you've got probes put in? I'm scheduled for SBRT in mid July if liver scans are clear:) guess you're going to be trailblazing the way for us.

[CoolBreeze]

Cheery, the actual SBRT is non-invasive. It's just a radiation beam, you can't see or feel it. Other things they do for liver, like ablation, need open access to the liver and they use probes to burn away tumor, etc. There are side effects to SBRT though - it can cause gastro problems, chest wall pain, fatique.

What I had wasn't a probe, it was a marker. They put them around the tumor so that it can be tracked through your breathing cycle. It was invasive to put those markers in, but only minimally, not like a surgical procedure (which I have also done).

Now I don't understand your sentence - you said you were going to have SBRT if your scans were clear? My understanding is they are destroying tumor tissue, they won't do it on regular tissue, which is what will happen if you get clean scans. They need to be able to see tumor to do this procedure. They do it on people like me, who have only been partially successful with chemos, or people early in mets who only have a met or two that they can get to. They like the tumor to be around 3 cm; that's the size they say they can destroy easily. So I am confused by what you just said - maybe you are having something different? How would they do SBRT with no tumor?

[cheery]

Thanks vm for the clarification, Coolbreeze. Hmm..there was no talk of needles to be put in during the discussion with the radiation onco. I'll have to give him a call on this. Having read your posts, the needles don't seem very friendly:(

And sorry for the confusion re the liver scans. I'm trying to zap off one tumour so the clear liver scans should show no other complication than that one tumour. He was telling me that he'd an earlier patient who had to abort as her MRI scan was not favourable.

The side effects, as I understand, is dependent on where the tumour is. Mine's on the edge so it might give me mild bone fractures as the worst case scenario. FYI only.

ETA - my initial tumour was 4.5cm and he's going to burn off all of it though it's now 1cm. This is to ensure we get all the diseased tumour tissue.

[CoolBreeze]

Yeah, Cheery, I'd be curious to know why yours is different than mine. Everything I read says fiducials are always placed when SBRT is in the liver but it might be that yours is so easy to get to that it isn't necessary? (Mine is wrapped around the portal vein)

Or, maybe you are having a different type of radiation procedure? There are several things they can do for us liver metsters now, maybe you aren't having the gamma knife/cyber knife type thing?

SBRT is a very high dose of radiation, so you only need a few sessions, unlike the kind that you get after lumpectomy where it's a low dose with lots of sessions. I think they said I would have five "fractions," done a couple of times a week (I think).

I would ask anyway, it's worth a question.

And if they say you have to do it, don't freak out. It is not a fun procedure for sure but it's not the worst thing that's ever happened and you'll be fine. Maybe you respond to versed and fentynl better than I do. The versed is supposed to make you forget and I have never, ever forgotten anything they've done to me on it. Lots of people seem to feel like these procedures are only painful afterwards.

If your liver biopsy was painless, than this will probably be painless too.

Good for having your tumor shrink so much! That's awesome. I bet this will kill it dead, never to return. :)

[JillaryJill]

Ann, you are an amazing lady. You are in my thoughts.

[CoolBreeze]

Thank you! I got a call to set up the next set of appointments and it won't happen until the 27th, since my doctor is going on vacation. And, I realized that even after all this, I may not get the SBRT depending on what the PET scan shows. Now I'm nervous - I'm prepared to get it and don't want to hear I can't.