scared again - darn blood counts

[Pam P]

I'm sorry, it seems the only time I write lately is when I am panicking. I went for my herceptin treatment today & also got the results of my blood tests from 2 weeks ago. I've been off navelbine now since Jan. (I have bone mets.)

It was 2 weeks ago I saw the doctor. Then my ca2729 was 70. He said if the numbers stayed 90 or under we'd not worry about it, if they were 100 or more, then we'd take another look. I also asked him about my ALP liver enzyme test which has been elevated the last several months. He said he wasn't worried about it.

Today my tumor marker was 102! and my ALP was 179 (up from 150) and my AST, another liver enzyme, was 58 (it was normal before). I didn't see the doc today, but they did take another blood test to recheck these numbers. The nurse said that the doc would see the results when in then decide whether to move up the CT/PET scan which i was scheduled for the end of April (My last CT/PET was the end of Jan.)

Also my platelets have been diving..... they'd always been way over 200, but now for 2 months are under 200, today 151.

I'm so scared again. I've been feeling so good not being on chemo. And now I'm afraid I'm looking at more progression so soon and chemo again right away.

What do you all make of this?

Thanks for listening. Take care. Pam

[Esther]

Pam, hang in there! Try not to worry until you have more concrete input on your situation. From what my onc has said, I know that the tumor markers and the liver enzymes can bounce around sometimes for various reasons, unrelated to cancer progression.

It would be better to have your scans ASAP, to see what the situation is though.

I can understand how you are feeling, I have been on Navelbine/herceptin/xeloda for over a year now, and am getting physically weary of it. Based on my 2nd opinion with Dr. Pegram in UCLA, I have gotten to the point where I will discuss with my onc the issue of taking a chemo break, while continuing herceptin.

A chemo break will feel so great right now!

Your chemo options may not all be as bad as you think, discuss it with your onc, maybe you can try some of the AI's? Also some chemos have side effects that are not as harsh as others.

How is your quality of life progressing? Concentrate on that, and the fact that chemo may make it possible for you to have extra quality time that you enjoy, doing the things that bring you pleasure and being here for your family.

I know my goals have changed: they are now to achieve as much time as possible with great QOL, to continue to snow ski, water ski, travel with my husband and bug my son for as long as possible! If it takes chemo at times to achieve this....well, so be it! I mentioned to Dr. Pegram that I was shooting for 40 yrs of QOL, and he just smiled and said the patient always knows best what their prognosis will be. HA! Therefore I CHOOSE to believe I will be skiing in Europe in my 70's, and I'm 43 now...

Keep us posted on what you find out on your situation, here's to many more great years for us mets sisters!

[Pam P]

Oh, thank you Esther. You don't know how much I needed to read your encouraging words this morning after a very sleepless and worrisome night.

I have to remember that what I'm facing today isn't necessarily the end of the road. Although that's where my fear takes me.

Yes, there are more chemo options for me - I have not yet done xeloda, gemzar, & others. And I do appreciate Al, Lolly, and others who always are good a finding research data & new drug treatments starting. I'm encouraged when I read their posts on new hopeful things.

Esther, what kind of mets do you have? I know I've read in your posts, but I don't remember.

I was on navelbine/herceptin for a year. I see you are on that plus xeloda. I'm pretty sure that if I need to go back on chemo this soon that my doc wont' put me back on navelbine, but will do a different one.

You talk about QOL. For 2 months I've felt so good being off chemo. I'm so sad to anticipate that the chemo will resume so soon. I very much want to be one who can maintain on herceptin only indefinitely. QOL certainly takes a dip on chemo --- at least the having energy part for me. But if that's the price to pay to stay alive, to love my kids, and enjoy life, there's no question we do it.

When you said have you tried the AL's....... I don't know what that is?

Thanks for your message. Pam

[StephN]

Hi -
Hope that your doc's nurse will call you with the results of your last blood test. I was filing some of my labs for the last 3-4 months this morning and noticed how much some things can fluctuate. I was also on a big dose of Decadron for part of that time, and see that some values were up or down with this drug, then went back to normal when I got off it. I have been maintained on Herceptin and Zometa for over 2 1/2 years, and still do not have my stamina back to pre-chemos level.

Just take it one day at a time and try to focus on what you are doing and not start to speculate too much. Not so easy, I know, but is the only way to fight the "what if's."

Keep us posted!

[Lyn]

Hi there, don't beat yourself up too much, get the scans done so you know for sure what is going on. Tumour markers for us girls are just what they are meant to be, a guide, we need the rest of the puzzle for the picture. My CA15-3 markers have always been in the normal range under 30, my one last week was 13, but I still have mets to the right breast and I am undergoing 30 doses of radiation with Xeloda as well, the other thing is that when dead cancer cells are in your blood stream this causes the markers to elevate as well, there a few things that do, as for me I am just weird. Hang in there,

Love & Hugs Lyn

[Lyn]

To Esther, hi there, what dose are you on with the Xeloda/Navelbine/Herceptin? I find that I have to combine drugs to get any results.

Love & Hugs Lyn

[Pam P]

I just talked with the nurse. My ca2729 was down from 102 to 86 on the re-take. And both the ALP & AST liver enzymes were slightly down too. I am much relieved. The nurse will call me back if the doctor wants to make any changes at this point. This is a good reminder to me to not get so whacked out over blood tests, that they do fluctuate. But everything is so scary & I get in the grip over anything that might be worse. I'm trying to breathe deep. I am thankful for your suport.