so discouraged

dorinda · 08-31-2007, 03:44 PM

Well, I Was Able To Get My Weekly Chemo Because My Liver Enzymes Were Back To Normal. I Used The Imformation Yall Gave And I Believed It Worked, Thanks Alot. Now It Seems My Ca 2729 Is Bouncing Around. It Has Never Gotten To Normal Yet. In June It Was 42 Then In July 52 In August He Took It Two Times First It Was 46 Now My Onc Called And Said It Went Up To 51. Oh My Gosh, I Am So Discouraged. I Have Been On Chemo For 32wks. And I Am Tired And Was Hoping To Get To Normal So I Could Get Off Chemo For Just Alittle While. I Just Dont Beleive I Will Ever Get To Ned. I Want To So Bad. I Guess Bone Mets Are Harder To Fight. I Was Wondering If I Should Ask My Onc If We Should Use A Different Type Of Chemo. This One Is Tolerable For Me But If It Is Not Working Anymore . I Mean My Mets Has Not Spread I Just Cant Get My Ca Number Normal.any Suggestions For A Weary Her2 Warrior. Should I Put Such Importance On These Numbers. Dorinda

kcherub · 08-31-2007, 05:03 PM

Dorinda,

Oh, I am so sorry that you are feeling so discouraged. Please know that I am thinking of you and hoping you will get a (much deserved) break...because you have some success!

Take care,

Vanessa · 08-31-2007, 07:07 PM

I am keeping you in my thoughts and prayers and wishing for you a long period of NED. My mother's 75 year old friend just finished a lengthy battle with breast cancer mets to the cancer and is now NED. I know this can happen for you.

tousled1 · 08-31-2007, 07:11 PM

Dorinda,

I hope that you and your oncologist aren't just depending on your markers to be normal. Are you having regular bone scans to check for progress?

Catherine · 08-31-2007, 09:15 PM

Dorinda,
I do not know a whole lot about mets, however, I know that my oncologist said not to pay too much attention to those counts. I do not know if this applies to your situation, but I hope it does. Also, my Onc says it is a good sign when your tumors shrink from the chemo. I know that sounds elementary. He said this to me because I had chemo before surgery and my tumors shrunk to almost nothing.

Keep on asking questions and doing your research. If you like your doctor and you think he/she is smart and informed, trust that they will get you the best drugs to fight your particular DX. But do keep asking, keep notes and keep everyone accountable to get you the best solutions that are out there.

We here at the HER2 site will try and help you do the best.

All the best, Catherine

Wendywins · 08-31-2007, 11:25 PM

Dorinda..
It is important to focus on the positive..which is that your tumors on your liver are gone! tumor on skull gone! tumor on ribs gone!
It sounds as if the tumors are now localized to your sacrum and lumbar but no NEW sites and no growth? So the changes are in the right direction. By all means talk to your doctors and make sure you are getting help with side effects like fatigue, depression, etc. How is your nutrition? Ask if there is a way to make this time more comfortable so the treatment is not so wearing. I sure slept a lot during my chemo treatment periods and nodded off all the time. We are all pulling for you and feel for you . Best wishes.
wendywins

dhealey · 09-01-2007, 02:40 AM

Dorinda,
You can't go by marker numbers only. You have to go by the scans and it does sound like there is great improvement. Don't give up, you will get through this and be NED. I will keep you in my prayers. I truly believe in the healing powers of god. Try to stay as positive as you can and give your body as much rest as you can. God Bless.

Blanche · 09-01-2007, 06:43 AM

Dorinda, I agree with Debbie. Your doing everything you can, hang in there. I do believe that God will heal you of your wounds and restore to health. Blanche

Beckie · 09-03-2007, 08:15 AM

There was an interview posted a few months ago with one of the doctors who developed Herceptin, and he said he did not worry unless the CA27/29 doubled twice in a row. For example, from 25 to 50 and then to 100. I do hope yours goes down soon. God bless.

Beckie

Sheila · 09-03-2007, 10:18 AM

Dorinda
I know how you feel, I have been on Taxol with Herceptin and Avastin since June...I am so tired of it....maybe more of the premeds
I would hope your onc. would be more attentive to scans than your blood tests. They seem to be unreliable.

Mary Anne in TX · 09-03-2007, 10:47 AM

Thanks to everyone for this thread! I love all the reminders!
My CA 27-29 went up from 30 to 41 last month and I'll have it done again in a couple of weeks (will have been 6 weeks apart) to see what it shows then. If it goes up significantly, I'll ask to get scans. Mine have been accurate and I know that my onc wants them going down again.

It always makes me feel better to remember to focus on the positive and tend to signs when there are a couple to indicate checking is necessary.

Thanks and keep the faith. I kept telling myself during treatment..."This is only temporary and will end soon". Support from Her2 warriors makes all the difference!

Love to all, ma