Feeling very discouraged

froggy1

I had my first check-up today since starting carbo/doxil for my first recurrence. Sadly my CA125 went from 16 to 34. While this may not seem that high, my "original" baseline was 5.
I was crushed. The doc said we will wait until another chemo cycle, then evaluate. The first carbo/taxo knocked it down right away. I feel like I am beginning a life on chemo, just waiting 'til it doesn't work anymore. My doc isn't much for words, so I didn't get a lot of anything either way. He also hates questions! I got my lab results early or I think he wouldn't haven't even mentioned the CA125!
To add to my misery, 'tried a different hair color today and it came out horrible and have guests coming tomorrow. My husband said it will probably all fall out in a few weeks anyway! LOL Ginny

kayandok

Hi Ginny,
sorry to hear about the rise. With doxil, it does go up first sometimes before going down, and you could have some kind of inflamation tirggering the rise. Hang in there, and keep us posted.
Hugs,
kathleen

beth1465

I know how discouraged you
I know how discouraged you are. I finally got mine down to 21 after 8 carbo/taxol treatments, and at my first 2 mos ck it was up to 49, then 314, then 720. So I just started Gemzar. I feel the same way, like I'm on a lifetime cycle of chemo. Just keep moving forward and doing everything the MD suggests. Pray and stay positive (which can be difficult!). Keep things normal, and don't let cancer steel one more second of your life.

Beth

Hissy_Fitz

Ginny, I know how
Ginny, I know how discouraged you must be, but I also know that Kathleen is right - the Doxil is famous for taking its own sweet time to do the job.

I don't know what it is with these doctors who hate questions, won't look people in the eye, etc. That's outrageous. If my doctor didn't communicate with me, I would kick him to the curb. Seriously. This is your body. No one has a right to keep you in the dark. You have choices, and decisions to make. Don't let this guy make you feel like you don't.

The hair thing is neither fatal nor final. Re-dye it tomorrow morning, or treat yourself to a professional, up-scale salon "fix". Or you could break out the wig collection. You did save your wigs, didn't you?

Carlene

froggy1

Hissy_Fitz said:

Ginny, I know how
Ginny, I know how discouraged you must be, but I also know that Kathleen is right - the Doxil is famous for taking its own sweet time to do the job.

I don't know what it is with these doctors who hate questions, won't look people in the eye, etc. That's outrageous. If my doctor didn't communicate with me, I would kick him to the curb. Seriously. This is your body. No one has a right to keep you in the dark. You have choices, and decisions to make. Don't let this guy make you feel like you don't.

The hair thing is neither fatal nor final. Re-dye it tomorrow morning, or treat yourself to a professional, up-scale salon "fix". Or you could break out the wig collection. You did save your wigs, didn't you?

Carlene

The hair thing
Hi Carlene,
'Had husband run and get me the right color. I'm thinking the Doxil did it. My hair almost looks like that orange color of Doxil! LOL 'Wonder if it is in my hair follicles? LOL Yes, I have my wigs, but have been enjoying real hair, although sometimes I think the wigs looked better! I'm going to try the hair thing tomorrow. 'Hoping I don't get purple.
As far as the Doc, I don't have a choice. He's about the only game in town. His reputation is the best doc, the worst personality. We shall see!
As far as the Doxil working slowly, I will give it time, but the Carbo has no excuse!:)

Tina Brown

froggy1 said:

The hair thing
Hi Carlene,
'Had husband run and get me the right color. I'm thinking the Doxil did it. My hair almost looks like that orange color of Doxil! LOL 'Wonder if it is in my hair follicles? LOL Yes, I have my wigs, but have been enjoying real hair, although sometimes I think the wigs looked better! I'm going to try the hair thing tomorrow. 'Hoping I don't get purple.
As far as the Doc, I don't have a choice. He's about the only game in town. His reputation is the best doc, the worst personality. We shall see!
As far as the Doxil working slowly, I will give it time, but the Carbo has no excuse!:)

Hi Froggy
I do sympathise with you. I have heard lots of stories about Doxil and CA125 rise. As I understand it Doxil /Caelyx is a slow releasing slower working drug. I will go to my doctor's appoinmemt with the expectations of my CA 125 rising. I think we have to look at the bigger picture here and hope that by the end of the 6 cycles the count would've come down. That is how I am looking at it.

Is there a nurse that you can talk to and ask questions?

Take Care Tina xxx

nancy591

Doxil
Yes to the Doxil making the ca125 jump. When I started Doxil in January my ca125 was 8. It went up to 15 then down to 11. All in all I did 5 rounds of Doxil before moving on. Good luck to you Ginny!!!

Mum2bellaandwilliam

Some docs suck!!!
Poor you,
Some doctors are just plain insensitive!
When we first met mums consultant he was down right rude to us and didn't like us asking questions!
When I did ask a question his reply was you wouldn't understand anyway!!!!, No sir I am not ever likely to if you don't give me an answer!!!
Horrible man , I am sure he is very good at his job, just not good with bed side manner!

Liz xx

clamryn

I know what you mean
Hi Ginny, I know the feeling with everything you are saying. I finished 8 infusions of carbo/doxil in September and my CA125 slowly rose. It is currently at 37.4. I always have to ask my doctor what the number is. He never gives me the results when I see him. I don't know if he doesn't want to tell me or what. He tells me not to worry.....yeah right. He is constantly telling me that he treats the patient not the numbers.

As far as the hair thing, I didn't lose all my hair and I keep wearing my wig. Why....because my hair is mostly grey now. I am glad you mentioned about coloring... I think I am going to get me some hair color and do my hair and see how it comes out. Ha, it probably will come out pink.

Hang in there,
Linda

froggy1

clamryn said:

I know what you mean
Hi Ginny, I know the feeling with everything you are saying. I finished 8 infusions of carbo/doxil in September and my CA125 slowly rose. It is currently at 37.4. I always have to ask my doctor what the number is. He never gives me the results when I see him. I don't know if he doesn't want to tell me or what. He tells me not to worry.....yeah right. He is constantly telling me that he treats the patient not the numbers.

As far as the hair thing, I didn't lose all my hair and I keep wearing my wig. Why....because my hair is mostly grey now. I am glad you mentioned about coloring... I think I am going to get me some hair color and do my hair and see how it comes out. Ha, it probably will come out pink.

Hang in there,
Linda

hair report
Well, I did the hair thing again today and it is not Doxil orange anymore. I think I got it pretty much back to normal, although in certain lights I catch a hint of orange! LOL
The funny thing is I think I looked better 6 weeks after surgery and when I lost my hair. I have gained back my surgery loss weight and now am looking like my old self! LOL My driver's license picture with my wig is actually good! Go figure.... I can't tell if people were saying I looked good because they felt sorry for me or I actually looked better right after all the initial trauma! Hmmmmm.