Me too - tumor markers way up & anxiety high

Pam P · 09-15-2009, 01:18 PM

Today I went for chemo - which I couldn't have because my wbc was too low. The ca2729 taken last week was 1008!!!!!!!!!! Oh my God I am too panicked to even think.

The end of July it crept up to almost 600. Then my doc switched me to taxol/carbo/herceptin. One month later is was 900. When I saw the doc. mid-Aug. he said that he was optimist that the 900 was a good sign that the new combo was really effective & there was lots of debris in the blood stream as a result. And that it should that a large drop in numbers would result. 2 weeks ago another tumore marker test showed 938 which I didn't get too excited about going on the onc.'s theory. But now today 1008. I've had to miss 3 treatments since July because of low counts so I haven't been able to get all the chemo ---- but these jumps in numbers are huge.

Aside from low hemoglobin 8.8-9, low platelets (73 -180), & low wbc (2.4) today, my other labs - liver, etc. have been in normal ranges.

My bone mets are fairly extensive but as of last pet/ct in July nothing else showed up. I'm not having s/e from the taxol/carbo - and am feeling really good.

I had taxol before, but the carbo is new for me. I see the onc. next Wed. I'm sure he'll have another plan for new drug to try. But I'm running out of options and am getting more and more scared.

Midwest Alice · 09-15-2009, 01:35 PM

Have you looked at trials? Pam maybe its time to call MDA. Maybe they can put you on a trial. There are lots of trials out there. Keep the faith. Sending you a hug!!

Mary Anne in TX · 09-15-2009, 02:07 PM

Pam, if the combo was working and the only problem was the blood counts, why can't they give you something for the counts and proceed with the treatment?
Sending prayers and good vibes your way! ma

Pam P · 09-15-2009, 02:30 PM

Mary Anne - I don't think I made the blood count thing clear. The ca2729 tumor marker counts that are going to high are not the reason I couldn't get chemo treatment. They represent increased cancer activity - and probably that this chemo drug isn't working. The blood counts that kept me from getting the treatment were the white blood & platelet counts.

Becky · 09-15-2009, 02:36 PM

Pam

I am still advising to talk to your onc about antihormonals - Faslodex or Aromosin. Its a try!

My prayers and thoughts are with you. This is really a high stress time.

tricia keegan · 09-15-2009, 03:05 PM

Pam, my onc does'nt do tumour marker's and never did so forgive me if I'm wrong, but I thought I read somewhere that chemo itself can raise these numbers??
Either way, I'm sorry you're so worried about it which of course is normal. Are you due another scan soon that may tell you more than bloodwork?
My best wishes to you and I hope you can resume your treatments as normal asap

Pam P · 09-15-2009, 05:32 PM

Becky - I've already tried Faslodex for 6 months - didn't work & tried Femara & it didn't work either. My onc. says the aromasin would be same effect as femara.
Tricia - I know some onc. don't do tumor markers because they are not reliable with everyone. However, mine have seemed to up & down in the past in line with what was going on with my scans etc.... so I think they are at least somewhat valid indicators for me.

Mary Anne in TX · 09-15-2009, 05:39 PM

Pam, I know. Can't they do something with the white count and platelets thing? ma

Sheila · 09-15-2009, 06:04 PM

Pam, I understand your anxiety and frustration. That does seem like they are climbing, but with your counts so out of whack, I am wondering if that is also falsifying the tumor markers, esp. with the low platelets and hemaglobin. What are the chances that you could get into the T-DM1 trial Joe talked about in Idaho? I know its a ways from Minnesota, but thats what angel flight is for. Is there anyway you could see if you could qualify? I am also wondering if you have missed 3 treatments, and your counts are not recovering, why they don't give you something to boost the red and white cells. They can give you platelets, but they dont last.....its better to manufacture your own. Sending you strength and a big hug Pam, this is just another hurdle, and I know you will overcome it. Please let me know if I can help in any way.

sassy · 09-15-2009, 06:05 PM

I think Maryanne is referring to Neulasta or Neupogen to build white counts so you can take treatment.

Would either of these be an option?

Pam P · 09-15-2009, 06:49 PM

I do get aranesp every 2 weeks for the hemoglobin... and still it hovers around 9 which I guess is my new normal. I gave myself neupogen shots years ago when I was on navelbine because it caused low white counts. If the low white counts are going to be regular obstacle - so far it was just today - I'll ask if I can take the shots again. Other than these 2 counts being low but not drastically low - my other chemistry numbers are all within normal range.

ElaineM · 09-15-2009, 09:30 PM

I am very sorry to read your news Pam. There was something earlier about a circulating tumor cells test that can be done by either a bone marrow biopsy or a blood test. You might want to ask about that if you are worried about the cancer getting worse.
In the meantime, in addition to the ideas others have I would like to suggest you eat more fresh or frozen vegetables, fruits and mushrooms. They help the immune system. White blood cells are part of the immune system. You might also like to take mushrooms, astragalus and good old echinecea in supplement form.e white blood counts. What about eating more foods that are high in iron. You don't have to eat liver or other meat to do that. Beans have alot of iron. So some other foods. You can find liquid iron or iron pills at your local pharmacy. The pills tend to cause constipation, so the liquid might be better. Leafy dark green veggies help build oxygen in the body. That might also help the hemoglobin. I kept my blood counts healthy with food and supplements. I never took the shots oncologists give. I never had to skip my treatment because of low blood counts. You might not see huge jumps in your blood counts right away, but they might get better in time.
I never asked my oncologist for permission to eat these things or take supplements. I have a naturopathic physician who is very knowledgeable about conventional cancer treatment.

Joan M · 09-15-2009, 11:07 PM

Pam,

The platlets are difficult to control, but perhaps you can take Neupogen again, or Neulasta depending on whether there's a 14-day break in chemo.

I had trouble with my white cell count and used to give myself pre-loaded shots.

What about trying Tomoxifen again?

I'm praying for the right combo.

Joan

Chelee · 09-16-2009, 12:34 AM

Pam, I wish I had some answers for you but I don't. But since I'm stressing about my TM'ers rising I can certainly relate to your anxiety & stress it causes. You've been through so much already...you sure don't need this. My heart goes out to you and I want you to know I will be keeping you in my thoughts and prayers. Big hugs!

Chelee

Diane H · 09-16-2009, 08:03 PM

Am sending out prayers for you. This is a hard part of the journey, may it get quickly and steadily better. Wish I could give you a hug.
Diane

caya · 09-16-2009, 08:13 PM

Pam,

I am sorry you are going through this. I am sending big hugs and prayers your way from Canada.

all the best
caya

ElaineM · 09-16-2009, 09:30 PM

By the way, you might want to try to find out if you have inflammation, lymphdema, benign tumors or seromas somewhere in your body. They can all raise the tumor markers.

Ruth · 09-18-2009, 04:33 PM

Pam,
I am sending a huge hug to you and wish I could do more. Everyone has such good ideas and I sure wish you could look into the T-DM1 trial.
Hugs ~ Ruth

Lori R · 09-19-2009, 06:12 AM

Pam,
I've been thinking so much about you.

After rereading your post it actually is encouraging. You indicate that the counts that could cause you to not get chemo can be "boosted"...yea!!! Use those boosts to get your chemo.

Based on other blood measurements you continue to be physically strong and could handle a variety of Chemo options.

So now...(if worst case...which we don't know yet) it is a matter of finding that new cocktail.

I'm with Ruth, the TDM1 option seems to be effective if you can get in.

Pam...I believe you recently "retired". Use that wise decision to give you the flexibility to pursue options (maybe in distant locations) that you would not have been able to pursue had you been working.

And of course...use some of that time to pamper yourself.

Please keep us posted....Lori

ElaineM · 09-20-2009, 03:27 PM

I decided to do some research on tumor markers and share the results with everyone, so here are some links and assorted articles for both patients and medical professionals on the subject.
TUMOR MARKERS
http://www.plwc.org/plwc/external_files/tmarker_fin.pdf
A Patient’s Guide to Understanding Tumor Markers for Breast and Colon Cancers

http://www.usc.edu/schools/medicine/departments/pathology/research/clampcancer/up_from_HL/papers/liabrary/Tumor%20Markers/clinical%20translation.pdf

http://jnm.snmjournals.org/cgi/content/full/45/12/2045
Is 18F-FDG PET/CT Useful for Imaging and Management of Patients with Suspected Occult Recurrence of Cancer?
The results of present study indicate that hybrid PET/CT plays a potential important role in the early diagnosis and assessment of the extent of relapsed disease in cancer patients with increasing concentrations of serum tumor markers as the single suspicion of recurrence, with a significant clinical impact on further treatment planning in one third of the patient population.

A Re-Evaluation of Carcinoembryonic Antigen (CEA) as a Serum Marker for Breast Cancer

http://clincancerres.aacrjournals.org/content/7/8/2357.full

ASCO RECOMMEMDATIONS FOR TUMOR MARKERS IN BREAST CANCER.

http://www.asco.org/ASCO/Downloads/Cancer%20Policy%20and%20Clinical%20Affairs/Clinical%20Affairs%20(derivative%20products)/Breast%20TM%202007%20Changes-Final.pdf