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I Actually Have Options???????

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

Wow, that was a cool visit. But first my scans...I had them last week, and met with my new onc about them today, and I must say, I think I like him a whole hell of alot better then my old one who just moved...he was so easy to understand, so comforting, and answered my questions like they should have been, not being so vague, but being clear. The tumors are all still contained in my liver, none anywhere else, lungs clear, but there is a small percentage of growth in a couple of the tumors. (I cried when I heard that)I remember asking how many tumors I had in my liver to my old onc, and she said "your liver is like shattered glass" that's all she said, so I figured they were all over my liver, loads of them, like shattered glass! Well, he told me I only had 8-10 tumors, the biggest one, having no activity at all, the little ones having just a 1 mm growth. He suggested me to try FOLFOX..this is the chemo I was dreading, and scared of, hearing all the horror stories, OR he also wants me to talk to this radiologist about something called Radio Spheres??? he said it's been around a little while, and the only bad thing about it, is it's temporary. They mark the tumors, and blast them with these glass beads I believe he said, but they will come back, and they can just keep doing that, he said he wanted to give me a break from the chemo, so, I said I may be interested...

I just wanted to ask you guys if anyone has done this? and what do you think? My old onc never even suggested anything else like this to me, and he was on her team. He told me sometimes 2 different eyes are sometimes better then one ;)

The plan is to just do 4 rounds of Oxy, as he does not want the neuropathy to be bad on me, and then give me a break from the chemo and do the spheres...I definitely could use the break, that's for sure, and it doesn't sound like it's an invasive surgery, but he does want to set up the meeting with the doctor for that, and ALSO a referral to a genetics doctor, where he will do a more thorough genetics testing on me, he said if Folfox don't work, there are alot more cocktails he wants to try, including clinical trials. He will not give up on me he said. I felt alot better when he said people have been doing this and are alive after many years, I said I would be happy if I was to see my grandchild, and he said "Of Course!" We gotta get working again :)

So far, this first treatment of Oxy, actually hasn't been bad, I been drinking warm stuff, not touching any cold, I got my gloves out! LOL..and my nausea pills out and maryjane of course, but guess I'm now in the club of doing the both the Folfiri, and now the Folfox! I hope this works, and stops it in its tracks! anyone has done Radio Spheres, please let me know your thoughts on it. :)

Thanks all for listening!
Hugsss!
~Donna

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

donna that all sounds good....so happy to hear you sounding happy and even optimistic...just the way it should be...good for your new onc. Can't help with spheres but can welcome you to the Oxy Club...a well known club here with lots of members. :) :)

hugs back at you....

mags

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

Another opinion is always an eye-opener, isn't it? Sounds like you're in good hands, Chicky. I already feel so much hope for you after reading your post.

4 cycles of Oxy should be OK - effects are cumulative, it makes you feel bad, but nothing you are alread not used to...just sleep when you need to no matter how long you need to.

Patti and Christy did Sir Spheres and I think this is along the same lines - it was rough on them, but will let them fill you in with their experience.

Oxy is sure to shrink those liver tumors, honey, so just hang on...help is on the way :)

You made my night with your post - I feel the "joy" in your heart - oh, what a feeling!

As you say, Huggsss and Love, Chicky
~Lion

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

Just read your post, my understanding is that Radio Spheres,Thera Spheres and Sir Speres are all the same thing. My understanding the beads are the size of sand and they shoot thousands of them into the liver. This is what Patti just had and another member whose name escapes me. Aslo, on the Colon Club there is a gal called CindyZ, her hubby had these just before Patti. Don's sweat the Oxi until you have to, George worked full time while doing 12 Oxi treatments. If it works, then it is worth anything you go through to get you to the spheres and onward to resection. Sounds like your old onc was more concerned about her move than her patient and that really pisses me off. Take care - Tina

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

I thinks that's some great news and I agree having two sets of eyes and two minds working on this is better then one. How often do they want to do the four rounds of Oxy? Weekly? Bi-Weekly? I sure everything is going to be fine and I'll check back in to see if anybody posted anything about "Radio Spheres". Remember we have a wedding to go to!

Lov ya
Brooks

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

That will be an important date Brooks! I will be doing 4 rounds biweekly, just 2 months of it. He thinks I may be inoperable, I believe they are in locations that may kill me if they try, but you never know, maybe the oxi will make it disappear! Thanks for the posts, I feel like I do have better hope out there now, and you guys to hang onto when I'm going down :)

Hugsss!
~Donna

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

Inoperable, remove that word from your vocabulary please. Finally, you are getting some good news so kiddo, you had better run with the news. This doc has given you lots of hope and that sounds like a lot more than you got from the old onc. Tina

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

but you aren't going down! you are going up up up!

Craig is right...four rounds of oxy will be fine...you are a tough chicky...

shall I send big bunches of Canadian mittens, balaclavas, and toques? :) :)

mags

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

I am happy with the news, was scared at first, but I will run with it! you're right!

Oh Mags! that would be awesome! they have the spring collections out now, so the job of even finding gloves is going to be a pain LOL! I know I have a set somewhere......

Hugsss!
~Donna

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

I know where they have some do you guys have a Wal Mart? They have cotton "Glove Liners" that I got and used. It worked great when I was on Oxy and they're only a dollar a pair. If you cant find any call me.

Brooks

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

Walmart is like my 2nd home there! I'm there all the time LOL!!

My kids hunted and found some gloves I bought in their closets, and I now have like 3 pairs, so I'm good there! I always buy those $1 for 2 pairs of gloves, and they come in great colors! I had to use then for the first time, as I was cleaning my dresser, and picked up a cup to wash in the sink and yow!!! It was cold!! and also wooden floors aren't good to walk on barefoot!!! was like fire on my tootsies!! I had to find my slippers, and everthing was ok! I am watchin the temperature of my foods now, and so far so good there!!
I hope it doesn't get too bad, it's only for a few days right till you're back to normal?

Hugsss!
Donna

khl8
Posts: 810
Joined: Nov 2009

Donna, the senstivity should last about a week from your disconnect, at least it did for me. Then you have a break from it and then onto the next treatment! YOU CAN DO THIS!

coloCan
Posts: 1956
Joined: Oct 2009

my first experience with oxy I survived the scheduled five rounds but the second time around, oxy in the FOLFOX, I got knocked out after the fourth round (my remaining doses to be without oxy). Hopefully you'll do well on all four.....the spheres is a form of highly targeted radiation, I think, In any event, wishing you the best of results, Donna......steve

HollyID's picture
HollyID
Posts: 951
Joined: Dec 2009

So glad you found and onc that you can finally "talk" to. This sounds so positive and encouraging. I b*tch enough about the oxy, but in reality, it's not that bad. I just like to gripe. :)

Oh... I am so happy for you!!

AnneCan
Posts: 3692
Joined: Oct 2009

Donna,

I am so happy for you! I have been thinking about you today + hoped you would post about your visit with your new onc. I am eally happy that you like your onc. so much - I know how stressful it is to switch (I had to switch in January after my onc moved to another hospital) + I really like my new onc too. It sounds like your new onc is very proactive + has lots of options in mind for you - just what we want to hear. Good luck on your new chemo cocktail + keep warm. At least spring is here + you won't go through this in the winter! Thanks for posting. My heart is singing for you.

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

Hi Donna,

I know the news of hearing some of the tumors grew slightly was tough to take, BUT that's so great about your new onc and how he gave you HOPE with the additional chemo and other types of procedure recommendations. We all need hope and I'm so glad you've just been given more with this new guy. :)
Folfox won't be the best experience, but with just 4 rounds, it shouldn't get too bad. I didn't start having more difficulties with it until I got into the 5th or 6th treatment and beyond. Make sure to take B-6 and L-glutamine (and possibly L-glutathione- not sure on that one, but check into it). I took those after I finished Folfox and the neuropathy took close to a year to resolve (but it did!) I wish I had known enough to take those while I was on it. Also, if they're not already giving it to you, there's a relatively new thing they can now give you while you're getting the oxy infused to help prevent the neuropathy. I know that Craig talked about it a while back- you might ask him if you're not familiar w/ what I'm talking about. I think it was maybe magnesium and some for of calcium- not exactly sure, but worth checking into before your next treatment.

Hang tough, Donna- you're an inspiration to all!

Lisa

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

Thank you, Lisa, you have such a good memory - glad I logged back in...

Chicky, ask them about MAGNESIUM SULFATE. It's a bag drop and it turned my life around when they started to give that to me. Literally, I could leave infusion and drink "cold liquids" right away - this is a nice physical & mental boost during treatment.

Prior to the introduction of that, it would take between 5-7 days of nothing but room temp drinks. And it really helped with the neuropathy in my hands and fignertips. Please ask them aobut this, because if it works for you, it will be the biggest blessing - and with you only doing 4x, it may help you even more.

-Craig

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

I did ask about the Magnesium Calcium bag drip, (see, I even remembered what the lion said too LOL) and he said he may not be even be doing 4 rounds and its up to me to do the Sphere now, and not worry about the Oxy, he's only doing the oxy because I wanted to check in with you guys and see what you thought, so I may be calling him sooner to hook me up with the radiologist and just get off the oxi, I'm so sick of chemo, it's unreal. He said the spheres do produce more life, and better quality of life for me. So I may be off the oxy by the 2nd round, and he said he did have patients use that Magnesium stuff which didn't do a thing for them, they all still ended up with horrible neuropathy and thats why he never has them do 12 rounds, he said he doesn't need 12, the oxi usually does it's job by then.

I love you all!!
Hugssss!
~Donna

WinneyPooh's picture
WinneyPooh
Posts: 318
Joined: Jul 2009

Donna, I know your excited about some new options, FOLFOX chemo, didn't cause me any throuble just tired, the cold thing its weird, I haven't had any chemo since last sept. but this is because of all the surgery, I have had to postpone my ileo reversal surgery until they decide what to do with my liver surgery,( wanting to do both at the same time, )
I am laying low of my oncologist because i don't want anymore chemo and i know if i see him he'll want to do it.

I am glad you are finding options, hang inthere and fight, and when you need a break, take it
Live, Laugh, Play
Winnie

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

It made me very happy to feel the excitement and optimism in your voice. I am glad that you have some new options for treatment. I wish you the best possible response with the least amount of side effects with the Oxi. And keep looking to the future my dear, you are an inspiration! You will be a sassy Grandmother (smile)!!!
Blessings to you,
Joanne

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

Donna, that's such great news! You can hear the joy and hope in your post like it's more than the written words! Shame on your old onc that she was incapable of passing that hope onto you as well. You are so young and vibrant and you deserve everything the world has to offer! You will do fine and it sounds like your new onc is in your corner! Stay strong and let us know how things go!
mary

mom_2_3
Posts: 964
Joined: Nov 2008

Donna,

This is the best thing I heard today. I am so glad that your new doctor has a plan for getting rid of those pesky things. I am sending you hugs!!

Amy

PhillieG's picture
PhillieG
Posts: 4885
Joined: May 2005

I'm very happy to hear you have options Donna.
Great news! I did FOLFOX, it was a while ago and it wasn't as "fun" as all of the others have been but it does the trick. You know this isn't all fun and games
;-)
-p

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

So glad to hear of a proactive plan emerging. I hope it all goes well.

Be well... Rob; in Vancouver

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

Donna, Hey it looks like you and I just switched chemo's, I am now doing Ironotecan and your doing Folfox. It was easy for me to do that one, Dr. did take me off Oxi at around 5 or so. It did alot for me but did not help out with the liver tumors. That is why I went to see an Interventional Radiologist and he recommended Sir Spheres (same thing as radio spheres) I will be honest and say that it has been painful for me. I also went in for a ct scan Friday and the tumors have gotten larger. Now this is suppose to happen they say, it gets larger and then starts dying off. Also I should have waited longer to take the CT because the IR Dr. says it takes a while for it to start working. I was having some other issues that is why they did the ct scan Friday. At this point I just do not know if I would suggest it, maybe in a couple of months I will be a cheerleader for the spheres but as of yet nothing has happened.Another lady on here Christy has had it done and she is pretty far ahead of me on the procedure and she has gotten significant shrinkage but she like me has had pain. Good luck to you sweetie, Patti

JR's picture
JR
Posts: 140
Joined: May 2009

Great news Donna. I'm happy for you. A new onc and new options, isn't it great.

John

TxKayaker's picture
TxKayaker
Posts: 177
Joined: Jun 2009

Congratulations , all the best to you.
Mike

khl8
Posts: 810
Joined: Nov 2009

Donna!
This is awesome! I am one of those that had 9 rounds of Folfox and I worked full time throught out the whole treatment plan. I do have some Neuropathy but it is getting better! I would rather have numb fingers and feet than cancer! I am so happy for you, there are options!
Kathy

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

I am so glad that the news is good ,sometimes a new face can bring good ideas .Have a wonderful day

michelle

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

That's really good news, Donna. About the growth.... 1mm is teeny. The circumference of a pinhead.

1 1/2mm is the length of the average FLEA. We're talking so small, most people wouldn't even notice! Sounds GREAT! You go girl!

Steve Z's picture
Steve Z
Posts: 51
Joined: Sep 2009

Not only a second pair of eyes, but renewed sense of direction. Move forward, and enjoy as much of the ride as you can.

I'm sure you'll do great on the Oxy, try not to worry about it. Get those gloves from Mags, and hope for warm weather.

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

I really didn't like cold things at all on oxy but the first few days were definitely the worst. I got a thermos and would keep warmish water or juice in it for waking up at night....nothing like reaching for that nice cold water glass....(NOT) don't forget socks hon...some nice warm furry socks are good...wear em to bed. I used to wear mitts to bed but you are entering spring and you should be good..

I stuck a pair of gloves on the front of the fridge with a magnet so I wouldn't forget and just never did the feezer aisle when shopping.

mags

hahah yes steve I'll get those mukluks and mitts in the mail

GOOFYLADIE's picture
GOOFYLADIE
Posts: 233
Joined: Aug 2009

There is always HOPE in moving FORWARD!!! You go girl. I am so thrilled for you and so damn happy that your LION has sparked abit. I hope he has rescheduled his appointment for his scans, remembering this too shall pass, and on to the good S%#$!!!!LOL
Huge hugs your way,
Goofyladie (Cass)

Devasted
Posts: 186
Joined: Jun 2009

Donna,

So glad to hear great news, there is hope! We visited the surg. onc. twice and he said there wasn't anything he could do for us but now we're waiting for a call to schedule surgery.
There are so many on this board who have been "inoperable" and now are beyond that.
Best of luck to you and don't ever give up! Thanks for your help, appreciate all those
words of encouragement you have given us!

Take care,
D

thready's picture
thready
Posts: 475
Joined: Sep 2009

Donna, I did not read through all the posts because I am tired from chemo yesterday. I did 9 treatments of oxi and was getting into some tough neuropathy problems. Treatment ten I had an allergic reaction and the dr said that is enough. We stopped oxi.

But before we stopped to help with the neuropathy the dr ordered Calcium and Magnesium before and after treatment. I also was getting the oxi over 6 hours. Those were long days, almost 8 hours for chemo infusion but it really helped keeping the neuropathy from flaring so bad.

I sure hope this works for you. It sounds like you got a keeper for a dr now.

I will read the posts after a nap or in the morning so if someone gave you the same info you can just ignore what I posted!

Take care
Jan

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

The nice (if there is one) thing about Oxi is that you will KNOW if it is helping or not after those few treatments.

Hang tough like I know you will.

Lisa P.

pluckey's picture
pluckey
Posts: 484
Joined: Jul 2009

Donna- I went through a whole drama over whether or not I should do this. When I met with the Radiologist, he could not convince me I should go this route. I was told by my treating hospital/surgeon that this procedure was the least harmful to liver and left liver resection a future possibility.

I then got hooked into Miracle Man - Dr. Fong at Sloan Kettering, he teaches on this procudere and he told me that NO WAY should I have done theraspheres, it could damage the liver for resectability.

I am one week post liver resection- after being Stage 4 this past year and not given much hope the frist 6-8 months. I had a great response to my chemo coctail. 7 tumors were resected and one was ablated.

There is another source over on Colon Cancer Board that told me some things about Theraspheres. not good. if you want to talk privately, pm me and i'll give you my phone number

((HUGSS))

Peggy

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

Good to hear you have a plan to work on. I hope it works out well for you.

HI PEGGY! Still enjoying New York?

TTFN... Rob; in Vancouver

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

Donna,

I'm so glad you have this new doctor. If nothing else, having a doctor who is positive and honestly cares about you should help you with this fight. I'm so glad you have hope!!

*hugs*
Gail

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

Now I'm scared to do the Theraspheres...I can't afford the trip to NY, and would love to go see Dr. Fong. What can I do? I don't want my liver damaged anymore, I haven't even been drinking as to not damage it anymore, this sucks. Hey Peggy, did you send your hospital records to him? or did you have to go see him?? I just took a scan last week.

My onc gave me no guarantees on either speres or surgery, he said I was a very healthy cancer patient, but is spheres a one time procedure?? or do you have to go more then once?

This is something to really think about now.

Hugsss!
~Donna

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

Talk to Peggy and weigh your options very carefully. I have heard both good and bad about the spheres but the other day when you posted such hope did not want to burst your bubble, I'm no doctor nor do I have experience with the sheres. I don't think waiting a week or 2 while you make your decision will have an impact one way or another. See what the Folfox does. For Christy on this site she just posted that they worked and she is now scheduled for resection. Talk to her also. Others I have read had nothing good to say about the procedure. It is like chemo, why does something work good for one person and the next it does nothing and they progress in their disease. CindyZ on the Colon Club, her husband just had the spheres, maybe somebody can hook you up with her and then Pattie on this board just had them. Like I said, weigh your options, this may be a good option for you at this time and then maybe not. I know running off to New York right now is not an option, like Craig said, he can't pull $$ out of his a$$. Perhaps sending records to Dr. Fong and getting a phone, written or e-mail opinion might be worth researching. This is a big step, you are a big girl, and I know you will weigh everything and do what is best for you and your family. I think of you often. Take care - Tina

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

Are always great! Your news is uplifting and full of hope. You have such a wonderful outlook and I know you are going to beat this. Keep us all posted. Marie

Fight for my love
Posts: 1530
Joined: Jun 2009

Hi Donna,it sounds so good.I am so glad to know you have a new oncologist.Appointment with this oncologist is as good as seeking a second opinion.I am sure that you and this oncologist will work everything out.Be good,Donna,keep fighting.Good luck with everything.

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Dear Donna,
Good to have options and a doctor you feel good about. You are strong and smart. You are moving in a good direction my dear.

Aloha,
Kathleen

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

I'm so glad you like your new oncologist. That can make such a difference. And to have new options on the table to consider is wonderful too!

As for the FOLFOX, don't worry - you'll get through it. I've made it through 10 rounds and I've had every weird syndrome, side effect, and allergic reaction to it. So getting through just 4 should be a piece of cake if you stick with this plan before considering spheres.

I use the "Ove Glove" in my kitchen. It is supposed to be used as an oven mitt, but I find it works great if I need to get anything from the fridge or freezer too. You can order online, or find them at places like Walgreens. Priced between $12 and $20 depending on where you get them.
http://www.walgreens.com/store/store/product/product_details.jsp?id=prod394857

Please keep us updated on what you decide to do. I'm just glad to hear you have more options now!

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

Yeah! Glad to hear the good news! Oxy did not affect me that bad.

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Hey Donna,
I hope the first treatment continues to be tolerable. Oxi sucks but it worked well for me. I'm thrilled to read about how much you like your new dr. Radio Spheres has worked well for some and not so well for others - just like chemo, radiation etc. I hope it works for you. Your plan sounds great to me.
Roger

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

Great news Donna......Love options. Sounds like this onc has good plans. Best to you,Paula

grammadebbie's picture
grammadebbie
Posts: 429
Joined: Jun 2009

Hey Sweetie,

So happy to hear that you have a new doctor that you like. It makes such a big difference and it's wonderful that you have choices. I did oxy and had a rough time with it but would do it again. You will do fine with 4 treatments, you're a fighter. I dont know much about the other procedure. I will continue to pray for you. I think of you often and you are such a sweetheart and so encouraging. I hope you find strength and encouragement from all of us who love and support you.

Blessing and Hugs,

Debbie (gramma)

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