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scan results

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

I got my results today and I am heartbroken!! the liver tumors have grown and a couple of new ones popped up. We are just devastated, I got the day off to digest this news and will start Ironotecan tomorrow. The Onc. said that my tumors just became resistent to the chemo. I just do not know what to do! I am just so shocked at the huge setback after getting great results and being so positive. I am sorry for whining I know so many of you have been through all of this and have rebounded. Please give me any advice and or your story, what to expect from this cocktail etc. I know hairloss is not the end of the world but that is just another thing to digest and to break to my kids tonight. My Onc. said I would for sure lose my hair, but I know Donna did not lose her hair. So, I am hoping maybe it won't happen. People have said (that don't have cancer) that it's just hair it will grow back well, not as long as your on chemo it won't! God Bless you all, Patti

damama24
Posts: 175
Joined: Nov 2009

I'm so sorry to hear about your set back. I will be praying for you and keep you in my thoughts. Please try to stay positive and fight back with all you have. I am new to the fight and sometimes get down on myself but coming to this site helps me realize there is hope and maybe some day a cure. I hope for that for you,me and everyone else fighting this beast.

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

Hi Patti, Sorry to hear your bad news but loosing your hair is not the end of the world. Just one more hurdle to get over. Hey... bald women are kind of sexy!! Just keep up the fight every day and we'll get through this TOGETHER.

Life is funny sometimes
Brooks

Annabelle41415's picture
Annabelle41415
Posts: 6236
Joined: Feb 2009

I'm sorry you received this news. I am sure you are devastated. What is the route that the oncologist wants to do. Is there a plan of action that is going to be followed with a new treatment regimine? I do hope that things get better for you and I will be thinking and praying for you.

Kim

Fight for my love
Posts: 1530
Joined: Jun 2009

Hi Patti,I was worried about you and I was waitting for your post.I don't like the bad news.You are in my prayers and I will continue to pray the new cocktail drug will be very effective and kill all the tumors.You know,many people are seeking for different opinions and new protocols,there is always hope.This is not a easy journey,there are bumps and detours on the road,hang in there,your efforts will surely lead you to a cure.Good luck with everything.

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

THe Irinotecan stabilized the tumor in my liver, are they going to be putting you on Avastin also? this would cut off the blood supply to the tumors that are feeding them and making them grow, and they will be taking the Irinotecan away from me after 3 more treatments, and keeping me on Avastin and 5fu every 3 weeks. I'm kind of happy to be just another week without it.

Don't worry, I know quite a few people on my cocktail who still have their hair as well. You will see clumps falling in the shower, I was in tears also when I saw it, don't feel bad about it when you do, hair is a part of you, and it is scary to see it go, but they have some cool wigs out there that you can't even tell is real half the time!

Good Luck with it, I hope this helps the tumors, it sure did me, it did shrink them, but didn't make them go away, I have alot.

Hugsss!
~Donna

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

Oh, Patti

I woke up late and saw this right away - I'm devastated and at a loss right now.

I know that cancer can become resistant to chemo after awhile, so this new drug may do good things where the other had stopped working. I know I was facing a switch because Folfox was no longer tolerable and we had discussed this as the next step for me at one time.

I'm really speechless right now and I won't wear you out with any more words - other than to say I'm still praying for you along with the rest of the board and we can see how the new treatment works for you.

You are in my thoughts as always - take this setback but remain positive, the mind is still powerful and you need it to keep going. I am still praying for a miracle.

-Craig

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

This is such a hard disease. What I want to do is just rock you and rock you. I'm glad you have the day off and if you can be outside and just onto hold the earth, or something of the earth, it can help stabilize the surges of emotion. Your family and friends of course are wonderful for this too, and in addition, I've found. I don't have any experience with the irinotecan but lots of folks here do and they can give you some practical tips. Holding you close in my heart.

Leslie

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

I am so very sorry to hear this news.

Diane

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

Dear Patti,

I havn't been posting for a while but have been around. I'm so sorry about your latest results. I will keep you in prayer. Never worry about sharing your feelings....we all do it and this is a great place because people understand. It doesn't matter if you are stage I or stage IIII - we are all facing the same monster. I am stage IIIc and have been clear for 2 years, I feel bad complaining because so many people would love to be 2 years out, but I also know that people here understand how I feel. I know you will receive alot of support and information from those who have faced a similar situation. You must continue to share your feelings without hesitation. You are a fighter and we are all here for you.

Please keep us updated.

God Bless You,
Debbie (gramma)

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

Too. Its just a set back you will get on new chemo and kick the cancer in the butt. Never lose hope,

michelle

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

It slowly thinned throughout my Chemo (12 rounds), I stopped chemo a month ago and it's growing back already!

When I first started chemo, I always said, "I have short hair anyways, losing it won't be so bad". Hah, famous last words - as the chemo ravished my body and I was losing so much weight, I thought, that losing the hair was THE sign I was sick, not just skinny and ugly.
I'm totally OK with it now, and even though I have a very expensive wig that looks GRAT and makes me look like th OLD Peggy, I'm fine going baldy. Like everything else in this shitty cancer battle, the feelings and acceptance of each challenge evolve and we fighters eventally get to a place of acceptance or understanding.

My thoughts are with you as you face this next challenge. ((HUGSS))

Peggy

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

Dearest Patti,
I am so very sorry that you got such hard news. Cancer is such a beast. I am praying for you. I like the comment about people out and in touch with the earth, a walk, sitting in the sun. I know those are little things, somehow they ground me at times. At other times a drive in the car, with the windows rolled up, the radio blasting and screaming my lungs out works.

Dick is on Folfori and Avastin. He has not lost his hair. He is getting the 5th treatment today.

With aloha and prayers,
Kathleen

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

I am so sorry that you did not receive the news you had hoped for. You have hit a major bump in the road but you must keep going to beat this monster down. Go and have yourself a good cry, have a full blown freak out, anything you need to do then go in tomorrow and face that darn chemo. Take care for now as you face this new challenge - Tina

mom_2_3
Posts: 964
Joined: Nov 2008

Patti,

I am sorry that the scan results aren't as you hoped, as we had hoped for you. It is hard to get bad news bit have faith that this is just a bump in the road to your healing.

I have not had Irinotecan so cannot comment on hair loss or other side effects. I lost a lot of my hair on Folfox but at some point the loss stopped and the hair started growing again. Just be positive that the chemotherapy will work on your liver tumors and your hair will grow back (if you even lose it at all). A good friend of mine lost a lot of hair on Folfox but had a wig made prior to treatments starting. Her closest friends of years do not know the difference.

I have mentioned it to others who also have currently unresectable liver mets and that is to consider getting an opinion for an HAI pump at Memorial Sloan Kettering in NYC. The therapy has done wonders for getting people I have met to liver resectability. If you want to PM me, please do so and I will help you in any way that I can.

Amy

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idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

I was on the exact same cocktail as Donna. My hair got very thin. No big bald "spots" just very thin hair. My hair was down to my waist. I did end up cutting it shoulder length to make it look fuller. I even dyed it a few times... couldn't stand the gray... and it still held up to that. I did end up getting a wig, eyebrows and eyelashes.... to make ME feel pretty. My husband insisted I didn't need it but every time I looked in the mirror I felt like a cancer patient... nope..that wasn't gonna work. When I go out I put on my hair...awesome wig...better than my own hair..and so easy...put on my make up...and I feel good about me. Your new drug I think is awesome! It sure did the trick for me along with the Avastin. Keep the faith.... things WILL work out. Take care

Jennie

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

Hi Patti,

I'm sorry to hear your scan results. We seem to be a bit in the same boat- I also got my scan results back today & my results aren't that great either.
My numerous lung nodules remained the same size, but the PET "uptake"/metabolic activity has gotten more intense in all of the nodules. I also have new nodules in my liver, as well.
As you begin irinotecan tomorrow, I'll be flying across the country to begin a new treatment that will hopefully take care of it. I apparently have become resistent to the chemo too. I had been on the Folfiri twice now, along with Avastin.

So far as hair loss, I did not lose my hair with irinotecan either, like Donna. It has become a lot thinner though, but no bald spots. Ask for some good antinausea meds and some prescriptions strength anti diarrhea meds. Maybe you won't need prescription strength though, as Donna said immodium was enough for her. It wasn't enough for me, so I got the prescription Lomotil & that did the trick. I have to take it pretty much every day.

Well, I will be thinking about you this week as we're both starting new treatments.
You take care & God bless-
Lisa

coloCan
Posts: 1956
Joined: Oct 2009

Never had ironotecan but be positive, as difficult as that may be,you may have more success with this weapon ....Steve

AceSFO's picture
AceSFO
Posts: 230
Joined: Sep 2009

Hi, Patti,

Sorry to hear about this setback. Hopefully you can see it as that, just a hurdle to get past and things will pick up again soon. Meanwhile I'll be sending lots of good thoughts and prayers your way. At least you've got this amazing group of people to back you up - it would most definitely be worse without this gang!
Hang in there!
Adrian

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

So sorry to hear of your poor scan results.

I've had three rounds of irinotecan. I lost my hair on the second go round. I was taking it along with xeloda and avastin. I started irinotecan a couple of weeks ago with erbitux. I had severe diarrhea and the irinitecan has been dropped for now. Have lots of imodium on hand!

I hope it does the trick for you.

Rob; in Vancouver

AnneCan
Posts: 3692
Joined: Oct 2009

Patti,

I am sorry for this setback. I am on irenotecan as part of folfiri + avastin & have had terrific results so far. After just 4 treatments, the cancer in my colon is not detectatble (no surgery yet) & 3 of the 4 lever mets have shrunken (the 4th stayed the same & did not grow). I have found this cocktail tolerable, mostly just fatiguing. My hair has thinned but I have not lost it & have not worn my wig yet. Not everyone even has hair loss; you might not experience that. You are right; while hair loss is not the end of the world, it is another thing to deal with on this journey. I know you said before that you were worried about how your kids will deal with this; I would maybe involve them in helping you to pick out a wig "just in case". In any case, good luck tomorrow, & I am sending my best wishes for success with this treatment.

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

Patti,

I'm so sorry! I wish I could give you a real hug, because I know you're devastated. Take a deep breath and try not to stress too much (I know...). Let us know how things go.

I'll be praying for you.

*hugs*
Gail

dorookie
Posts: 1736
Joined: Jul 2007

I hate to hear this news, but I am glad that your doctor has another plan, please know i will continue to pray for you, and will add a little extra prayer that you dont lose your hair. Good luck and please let us be there for you...

God Bless
Beth

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

I am sorry about your news. But don't give up HOPE. It can be done and there are many other options. You can always go wig shopping with your kids. They may get a kick out of seeing you trying on new "do's" and it would be a great way to tell them you may lose your hair. I think you would look great in a Katie Holmes wig or a fabulous Tina Turner wig! Prayers for you and your family. Marie

donnare
Posts: 266
Joined: Jun 2009

Sorry about your news. Just want you to know I'll be praying for you.

God Bless!
Donna

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