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My Scan Results

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

So I saw the doctor today before getting my chemo, and went further in discussing how bad my liver is, and what she said was I have multiple mets, which looks like shards of glass all over the liver, near arteries and vessels, and that's why I'm inoperable, it would be a very high risk surgery, but to not ever lose hope that this could change down the road.

She was talking about putting me on 4 more treatments with the Avastin, Irinotecan and 5fu before taking the Irinotecan which will be better for me, no side effects, and just doing it every 3 weeks, which if something should happen like it spread or something grow, she would throw the Irinotecan back in, but she said the disease has been so stable, and for the past couple months, including gaining some much needed weight, she said I was doing fabulously and looked great, and down the road, why change something that is stablizing, and working beautifully for me, there may be RFA, there may be thermaspheres, but she doesn't like to fix things now that aren't broke, so I feel better and confident with this, and know that with a liver that looks like mine, it usually is inoperable, and she told me she had many patients who have lived many years on maintenance therapy.

So, hopefully down the road, while I am feeling fantastic, something great may pop up, but you never know, I will keep this confident and positive attitude, and will still be living the way I been living.

Hugsss to all!
~Donna

coloCan
Posts: 1956
Joined: Oct 2009

and cure all of us. Your last sentence is beautiful, making the most of life as you possibly can. With an attitude like that and your inner strength you'll outlaast us all. Hopefully something will pop up to really help you......Steve

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

You know I hope we all last, we all have inner strength, we just need to get in touch with it more, and not let the darkness take over...

I have been planning for future things, like auditioning for "Seussical the Musical" that my theater is doing, I already did this with another theater troop, and looking forward to being in it again with the kids, with this other theater troop, the one I'm doing the Christmas show with.

Thanks for the comment Steve, you're so sweet!

Hugsss!
~Donna

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

Is good. I was at a Colon Cancer Alliance Seminar over Holloween at UCSF and there was a 15 year stage IV survivor there! 15 years. He said if it were not for the chemo that is around today, he would not have been there. It still breaks my heart to read that there is nothing that can be done for your liver. Have you talked to a liver surgeon or a interventional radiologist? However, if you are stable, then that is fantastic. You are a great inspiration and I hope you have applied to be a model on the colondar.
Marie

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

onc has been doing the talking with the liver surgeon, and he's the one saying the way my liver it is very high risk, since it's it's so scattered, but wow! what hope I have to even know someone has had this for 15 years, bless that person! Yes, they rate Stability as a success, even with this disease, and not looking at it as a death sentence.

Hugsss!
~Donna

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Donna,

I'm glad your onc was able to explain everything to you. Stable is definitely good!
My thoughts, however, are that I know I would personally still want to explore more options for making the liver tumors go away, rather than just be satisfied with stable. Having never had this done, I don't remember the name for it, but I would look into the type of chemo that can be fed directly into the liver, I believe with an intrahepatic chemo pump. It seems like, if I'm not mistaken, that Phil mentioned having this done at Mem. Sloan Kettering in NY.
I don't know enough about it, but am wondering if that might have a more direct effect on shrinking those liver tumors than just the systemic chemo you're getting now. It seems like I remember reading that it's normally used for stubborn liver tumors that don't seem to respond or go away with systemic chemo that's given in the usual way chemo is given.
I think it would be worth looking into, even when your onc says "don't fix what aren't broke". In my opinion, when you have tumors in your liver, things are "broke". You can always check with another onc or google who does this kind of treatment and inquire with them.
I'm not wanting to discourage you from feeling good about your scan results, as stable is definitely good, but my lung tumors continue to be stable and I decided that I want to see if I can find a way to make them go away, instead of just living with them (as I'm not a surgical candidate or even a radiation candidate for my lung lesions right now).

Take care & I'm sending you a PM with a question I have for you on a different subject, so check for that.

Hugs,
Lisa

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Yeah, she knows the liver is broke, but there are things that can also make it worse if tried, and she's so pleased with how I'm doing and just not giving up on me. I am thinking of going to MD Anderson, hope to get a second opinion, they said they wouldn't mind, and would work with other centers with me, they encourage second opinions, though they do have all the advanced treatments that MD has (my hospital is like the 18 out of 20 top elite hospitals)

I may think more of this after the holidays, and after she takes the Irinotecan away, which will give my body time to build back up after all that toxicity, and she even said I could use Probiotics!

My bloodwork was fantastic she said, potassium was alittle low, but what was interesting, was when I said should I be taking potassium supplements, and the chemo nurse told me not too do that, the potassium should be prescribed, and not bought over the counter, as it just doesn't work then. I had no idea about that, I had to take 2 potassium pills, and prescribed ones, they were huge horse pills.

I got your PM, and hope I helped ya out ;)

Hugsss!
~Donna

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Donna,

Yeah, I did get your pm reply, so thanks for that info!

Go ahead and enjoy the holidays knowing that you're doing fine for now. :)
You take care!

Lisa

TLG320
Posts: 168
Joined: Oct 2009

Marie is absolutely right: stable is good. We have no idea what new kinds of treatments are going to be available down the road. In the meantime, you're feeling good and living life to the fullest, and the treatment that you're on is stabilizing this cancer. Your oncologist seems to be pleased with the treatment and it sounds as though you still have some options down the road with possible RFA or thermaspheres.

Stay positive and have a very happy Thanksgiving this year!

Hugsss and love to you, Donna! You are truly an inspiration!

Tashina

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

...She seemed very happy today with the results and how beautifully I'm feeling, and how the chemo is working, she is pleased, and she's made me feel better as well, never know down the road, what's there, it will be fun finding out though!

Thank you sweety, I hope you have a wonderful Thanksgiving as well! You are all inspirations for me, if it wasn't for you all, I 'd be a basket case!

Hugsss!
~Donna

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

I'm glad to hear things are stable but I agree with Lisa. It won't hurt to get another opinion.

Hey, our minister who is with his wife at MD Anderson 'showed us' the campground where they are staying until mid Dec. It's very nice and a van from the hospital comes all day long picking up and dropping off patients. A guy from our church loaned them his RV so they could afford to go for her tx. Just an idea for you. :o)

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

I would take stable Donna...good for now. Wait and see :)

big hugs

mags

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

That sounds like a lovely thing they do, I'd do something like that for folks too as well, I will think about it more after the holidays and when she takes the Irinotecan away, and I only will have it for 3 weeks, then I'll have more time to maybe go, still alot to bite on!

Thanks Diane, my friend!

Hugsss!
~Donna

Fight for my love
Posts: 1530
Joined: Jun 2009

Hi Donna,I am sure the oncologist wants to have you try something else to see if this is going to shrink the tumors in liver.I think the oncologist is still looking for a way to take care of the tumors until the liver is operative.Hang in there.Stable is good news.Take care.Hugsss.

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

What I think, she's taking it slow and letting the tumors get smaller, as small as they can, these next 4 treatments, before she takes the Irinotecan away and lets me stay on the Avastin and 5fu, to rest my body, and let it heal alittle as well, but it was good to know she was thinking of other options, she really wants them at a certain size. Hope your hubby is doing well, tell him we send our love to both of you!

Hugsss!
~Donna

Fight for my love
Posts: 1530
Joined: Jun 2009

Thank you very much,Donna.Without the friendship and love from the people on this board,I don't think we can make it this far.Overall we are doing ok.After a couple of treatment of Folfox,the oxy starts to kick in.But when my husband feels good enough,he still goes to work.Next Monday,it will be the 3 of 12 treatments,we will be home resting during Thanksgiving.The oncologist asked if we wanted to switch the treatment after the week of Thanksgiving,but my hubby said no,we just want to get through this as soon as possible and I believe we will.Thank you very much for your kind and lovely words.

You know,you still have lots of options,I am sure you have been seeing many people are looking for new options including clinical trials,interferon+lovastatin,and even gene test.I know you are your own advocate.Although you had been through a lot,things are still moving,chemo is still doing its job.You are in my prayers everyday.I hope after next 4 treatments,the tumors will shrink more or even disappear.You take care.Hugsss.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

:)

Will talk to you soon!

-Craig

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Will look forward to it!! **ROAR**

**Peeps** & Hugsss!
~Donna

ittapp's picture
ittapp
Posts: 385
Joined: Jun 2009

Donna, I am pretty much the same boat as you! chemo, chemo, and more chemo.Inoperable and waiting to see if I get enough shrinkage for other treatments. Just found out my cea levels are on the rise. We are in this together and we just keep fighting (after a good cry of course)I am glad you are getting such good response from the chemo. I pray for you everynight. God Bless, Patti

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

May not be so bad either, all we do is live our life as we been living, get the cancer out of your head, get out, and have fun! The more things I get involved in, and even get out, the less I think about the cancer, and have actually come to terms with it, I'm just dealing with it one day at a time! and so can you, don't stay in the crying corner too long, or let it overwhelm and take you over, pick yourself and move to another area of though, happy thoughts!

My onc doesn't even measure anything by the CEA levels, heck mine are like 50! and I'm doing great, I feel good, and that's what is most important, don't keep focused on the numbers, they just don't matter.

You have a wonderful night Patti!

Hugsss!
~Donna

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

I'm glad your stable,but I would get another opinion.Have a good thanksgiving,and I will be praying for you.

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

It's good to be stable, and the cancer being contained, you are always in my prayers, and you have a wonderful thanksgiving as well!

Hugsss!
~Donna

usakat's picture
usakat
Posts: 625
Joined: Jul 2006

I love your spirit, Donna! Yes, stable is good, but I must agree with Lisa. Perhaps this is a good time to explore another opinion? There are so many treatment options, and they seem to change with each passing year, that it could never hurt to get a second or even third opinion for folks living through longer term treatment.

Keep up that positive attitude! Mary Engelbreit said, "If you don't like something change it; if you can't change it, change the way you think about it." You, Donna, are an expert with that sage advice. You are truly inspiring.

Keeping you in my thoughts and prayers, sending you many blessings for healing, love and happiness.

Hugs! Katie

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

yeah your stable and thats great...but we always want more...and she says your not operable......and I say your not operable "yet"...I want all thats in a sentence being said out loud....she means yet and you mean yet, your not operable "YET"..but you will be, I got faith that you will be operable, and I got a feeling that with your outlook it will be sooner than later...The game face you have on will get you through ..I have utmost confidence in you sweetie............Your Bro...Buzzard

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Thats what I also noticed...she does mention "YET" so she is still looking for it and not just ignoring it, like I thought she was. I hope so Clift, that it is sooner then later, but I won't rush her, she seems to know exactly what she's looking for and what she's doing. U am getting more confidence as my treatment makes me feel so much better since I been diagnosed, and haven't been in the hospital in a couple months :)

Hugsss from your sis,
~Donna

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

It's so good seeing you post here Katie, I love your posts, they are always so well thought out and eloquent! I will always have the positive attitude, even to the end, that's great advice that Mary Engelbreit said, I can do that, and I sure won't say "Never say Never" I think I will probably get the second opinion, after the holidays, hopefully have funds to get there, financially, I really can't, but we'll try. I don't mind exploring new options :)

You and spongebob are both in my praters, and hoping you and your family have a wonderful Thanksgiving! Live, Love, Laugh :)

Hugsss!
~Donna

Annabelle41415's picture
Annabelle41415
Posts: 6185
Joined: Feb 2009

I can understand your mixed emotions with this news. I agree that stable is good and why fix something that is broken and doing well. My thoughts are with the others in at least trying to get another opinion because it doesn't hurt to get more options available to them if possible. You are such an inspiration on this board with such a positive attitude. I know that things will be better for you. I'm glad that you have more options out there also. You are always in my thoughts and prayers.

Kim

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

It will happen eventually, the second opinion, I'm satisfied with my onc, and feel I know what she's doing alot more now. You are allllll inspirations, not me, I came here for what you all came here, friendships and to know I'm not alone with this, and good too meet fantastic people such as yourself here! You are also always in my thoughts and prayers!

Hugsss!
~Donna

mom_2_3
Posts: 964
Joined: Nov 2008

Donna,

You are an inspiration to me and others on the board. Keep going with your treatments but I would tend to agree with Lisa that perhaps a second opinion might be in order. I met a woman today that had 33 liver mets at the start of her treatment and is down to 5 by using the HAI pump. Perhaps you could look into that treatment option. If I can help you in any way I am here for you.

Amy

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

I could go there to NY as well, since I could even stay with family who still live on Long Island there, and they wouldn't mind even taking me back and forth, heck, I bet I could just take the train there, or stay at that hope lodge, and walk. The pump is kind of scary to me, and wonder more now of those Thermaspheres I was reading in another thread, and the RFA if I ever get to do that, she had mentioned that down the road.

Hugsss!
~Donna

Janet3
Posts: 61
Joined: Aug 2009

Gosh, I was sitting with my mom today at chemo and thinking about you and praying for good news. You are such an inspiration,as is my mom. You are two of a kind with your positive attitude and confidence. Each new day is a blessing, so keep enjoying it to the fullest! You will remain in my thoughts and prayers.
Janet

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Your mom I said Hi, and she sounds like a real sweet fighting lady who is going to kick this cancers butt like we all are! I do believe and treat each day as a new blessing, and thank God everyday I'm here when I wake up in the morning! I will live life like it hasn't even changed! You are both in my thoughts and prayers as well! Thanks so much!

Hugsss!
~Donna

donnare
Posts: 266
Joined: Jun 2009

Glad everything is stable and that you feel confident and still have a positive attitude. My husband, Brian, has basically been told the same thing about his liver. Hopefully, someday soon, something will "pop up" and we will be sharing info about RFA, thermaspheres, or something else to address liver mets. Like Buzzard said "...you are inoperable YET..". I keep telling my husband that too.

Be well - you are always in my prayers too!
Donna

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Tell your hubby you never know whats ahead in the road, but won't it be a nice surprise when it pops out in front of us :)

Maybe we'll be the ones who do the thermaspheres and all that, and we can tell how it was like! and right, I can keep doing this till I become operable!! Don't let your hubby ever dispair, so many new things coming out our way!

You both are in my prayers!!
Hugsss!
~Donna

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

Donna, You're a AMAZING person and you have taught me a thing or two about life. Thank you for being YOU!!

Life is funny sometimes
Brooks

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Thank you for your wonderful kindness and sensitivity and wit! I adore you, and you also have left me laughing, and I love to laugh! Thank you for being you, never change!!

Hugsss!
~Donna

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Hey, Donna.

I think this is great, especially your positive, fighting attitude. I do hope you'll be one of your doctor's patients who lives a long time, like 100 years or so. *smiles*

*hugs*
Gail

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Hi Donna,
I'm glad to hear you are stable, and you'll get a break from some of the meds to hopefully get a little more weight and strength back.

If stable is good for you right now, then go with that. I know you have a busy schedule with things you enjoy right now. But maybe after the holidays, consider a second opinion? Maybe you can get more information on the options out there. It seems like there are several diferent procedures used to shrink or remove or kill liver mets.

I hope things are going well for your holiday production, and that you continue to do well, staying stable, and enjoying theater and the other things you love in life.

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Enjoy the holidays, but please be agressive, that is where you need to be. Kick some butt....

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

I will definitely be burying the hatchet with some folks in my life over Thanksgiving weekend (long stories there) but it will turn out great, kids are going to see their cousins, and I'm going to cook for us the day before Thanksgiving, and then go to the Aunts house on Thanksgiving, I like to have alot of stuff for soups and salads :)

I will be getting more agressive with it when I feel I'm not feeling the way I should be, it's weird, I just have no pains, no nothing, like I'm not even sick, but that's ok, at least if I do feel weird, then something's going on. I will try to kick this butt, that's for sure, but right now, I been out of the hospital since September, and that's a record for me! I've been in and out all year, and finally just feeling like me again :)

You have an awesome Thanksgiving with your family, and make sure you piggggg out!

Hugsss!
~Donna

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

I will definitely be burying the hatchet with some folks in my life over Thanksgiving weekend (long stories there) but it will turn out great, kids are going to see their cousins, and I'm going to cook for us the day before Thanksgiving, and then go to the Aunts house on Thanksgiving, I like to have alot of stuff for soups and salads :)

I will be getting more agressive with it when I feel I'm not feeling the way I should be, it's weird, I just have no pains, no nothing, like I'm not even sick, but that's ok, at least if I do feel weird, then something's going on. I will try to kick this butt, that's for sure, but right now, I been out of the hospital since September, and that's a record for me! I've been in and out all year, and finally just feeling like me again :)

You have an awesome Thanksgiving with your family, and make sure you piggggg out!

Hugsss!
~Donna

Moesimo's picture
Moesimo
Posts: 1080
Joined: Aug 2003

Donna,

I like your attitude. Your postings are great. It seems like you are tolerating the treatments. Good luck in the play.

Maureen

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Hi Donna,

I do not know enough to offer any advice but I wanted to write and let you know you are in my thoughts and prayers. My best to you.

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

You have been through so much yourself, and love that your posting here more, you do inspire me as well, and have a great story. Glad to see your still with us as well, and I enjoy your posts! Have a wonderful Thanksgiving, and yeah, I start rehearsals this Saturday, thanks for the luck, I'm going to need it LOL

Hugsss!
~Donna

AnneCan
Posts: 3692
Joined: Oct 2009

I happy for you that you are stable; that is an accomplishment. I know you have said along the way that your tumours were shrinking. I find your attititude inspirational & your attitude will take you (& others) a long way. Good luck with the theatre; I have a daughter who is heavily involved in theatre & I know how rewarding it is to participate.

angelsbaby's picture
angelsbaby
Posts: 1171
Joined: May 2008

That is good news and i am happy for you stable is good and down the road maybe even NED

TAKE CARE DONNA YOU ARE ALWAYS IN MY THOUGHTS.

MICHELLE

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Is such a blast, they are like another family for me and the kids as well, it gets you out there on the stage to express yourself, and I'm loud, so they like I can project my voice well. I was doing "A Christmas Carol" a couple years ago in this beautiful angelic outfit, but had to sit there on a throne through the entire play in the corner, while the actors had to act the scenes out after I stopped reading. I had soooo much to memorize, and was so afraid I wasn't going to be able to memorize that whole story...it was scary, but the thing that was hard was trying to do a victorian english accent, with my New York accent, clearly I had a weird accent throughout the play LOL...the director kept trying to let me know what the words sounded like, but I just couldn't do it LOL...oh well!

You ought to jump in and join a show, I bet you'd love it, once you do it, you just want to keep on :)

Thanks for the beautiful comments, everyone here made me who I am today with their words of wisdom :)

Hugsss!
~Donna

CanadaSue's picture
CanadaSue
Posts: 340
Joined: Apr 2006

Donna,

As has been mentioned, stable is good. But do go for second or third opinion.

You are such an inspiration to us all.

Hugs,

Sue

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

I believe after the holidays, and once my tax refund check comes in, I"ll have more money to travel abit to go, too busy with these Nov and Dec months, but it may clear my head just to get another opinion. I Know how hard it is to fool with liver that looks like shattered glass.

Hugsss to you!
~Donna

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

You are so good at comforting me, and others, while you have so much on your plate already!!!!
Your 'can-do' attitude is amazing!!!

I have added you to my 'special prayers' list a while back, so hopefully that will help a bit!!!!!

Chemo breaks are good, sometimes, not only for the body, but the spirit!!!

I am sending big, warm hugs...

Hugs, Kathi

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

You have always been on my long list of prayers, thanks for that, I feel so humbled on this board, everyone is so awesome, and this is why you all are a part of me, my family. I do look forward to a break, that's for sure, and am sure my insides will be happy lol...hopefully it's time to just maintain my body to health, where I'll finally also get that darn juicer going, need the tax money now, since hubby been laid off since last month.

Thanks for the big warm hugsss, I am sending them back atcha!

Hugsssssss!
~Donna

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