Routine bloodwork

[Tam-56]

How often do they run blood work to check CEA and CA-15-3? I don’t have medical background (accountant) but like to compare my numbers from month to month.

[MONICAGELLER409]

I have mine done monthly. As a fellow accountant I keep an analysis spreadsheet to see variances month-to-month. Good luck! I hope the have a downward trend 😊

[Tam-56 in reply to MONICAGELLER409]

Monic, yes we just can’t get past doing an analysis on numbers! Lol — Mine were done 4 months ago but each month he does the CBC, Comprehensive Metabolic, Magnesium and Phosphorus. They have been in the normal range - that I think is weird because I have stage 4 bc!

[MONICAGELLER409 in reply to Tam-56]

That’s good. Don’t go crazy with the numbers because they can vary so much. My doc says it’s when the variance is large that she focuses in them and it’s true. My numbers go up and down but when they take a big jump i go for petscan and the proof is in the new mets or growth of old mets. My main focus is on spending time with family and friends because at the end of the day I want to enjoy whatever time i have left doing that which brings me joy. I’m sure you will do great. You sound like you have a good sense of humor and if you keep that you have half the battle.

[Tam-56 in reply to MONICAGELLER409]

I was in shock for a couple of months...but as I gained more knowledge about this cancer and found a Doc I felt comfortable with, read lots about what I could do to eat healthy and exercise, I felt more in control. I saw my Onc this week...says my blood work is good and I don’t need to see him until September. He would like me to be on Ibrance and Letrozole for four months before doing a Pet scan. I just finished my second round.

[MONICAGELLER409 in reply to Tam-56]

That’s awesome news! I’ve been battling for 3 years with my cancer and it has been slowly progressing nonstop, so I’m past the numbness. I just enjoy everything life has to offer while eating healthy, getting enough rest etc. I loved being on ibrance it had almost no side effects. Sadly it stopped working. I am sure you will do great. Being optimistic is key in this war against evil cancer.

[Clair19 in reply to MONICAGELLER409]

Monica, hi May I ask are you taking anything and what type of Mets do you have? I was diagnosed last year after 17 years Ned. Spine and rt lung. I couldn’t take Ibrance due to Neutrophils so low. I’m taking Faslodex. Thanks and sorry for so many questions. Thanks

[MONICAGELLER409 in reply to Clair19]

Hi Clair, two weeks ago I had a petscan showing progression so they stopped my treatment which was ibrance and faslodex. I have mets in bones, spine, ribs, lungs, kidneys, liver, nodes. I’ve depleted all hormonal options so at the moment i am off all treatment for a week and then i am starting Capecitabine on a 7 days on/7 days off cycle. Hopeful it will help and that i can maintain a balance of slowing down the cells and having a life.

[Hidden in reply to MONICAGELLER409]

Hi may i ask if you were on any other treatment in last year's 3 years? Stay hopeful. And try to laugh every day! Jax

[MONICAGELLER409 in reply to Hidden]

Hi Jax,

Yes I’ve been on a few. My first was letrezole with xgeva, then a clinical trial and latest ibrance with xgeva and fulvestrant. Had good results for a while and then the cells got tougher. I feel like it’s a boxing match meds vs cells lol. Now my next stop is Capecitabine.

[blms in reply to Tam-56]

Interesting! How low do your neutrophils get at end of cycle and what dosage of Ibrance are you on?

[Tam-56 in reply to blms]

blms, neuts are 41.9 as of Monday 3 days after finishing my second round if Ibrance 125 and Letrozole

[blms in reply to Tam-56]

Wait are you giving me your neutrophil percentage? Look at your absolute neutrophil count. It might be around 1.2 it something like that. Normal is 1.7 up

[Tam-56 in reply to blms]

Blms, Oh wait absolute neutr. 1.24 -that is low.

[blms in reply to Tam-56]

Think of it as 1240, that’s what it is. My onco had me continue my second month when I was 1200. So if you are 3 days off very probably you are beginning to rebound and in 4 days when you start again you can very well be in low normal range about 1.7 so for me that would be okay. My doc does not let me continue unless up to 1200 minimum. I would prefer to be at least in mid 2’s but that doesn’t seem to be in the cards at any dosage of Ibrance.

[blms]

Georgetown doesn’t do them at all. I keep tabs of my neutrophils twice a month. —day 15 and day 22 and if not good on 22 again before I start new cycle of meds.

[Tam-56 in reply to blms]

blms, I guess it’s the neutrophils we need to be most concerned with. They have been slowly decreasing over time by a couple points. Don’t know why he tests the magnesium and phosphorus each month but both are in the normal range. I go to Mass General Boston

[blms in reply to Tam-56]

Do you take a magnesium supplement at night? Have those counts been low?

[Tam-56 in reply to blms]

I only take a One-a-day Vitamin 50+ and two calcium citrate 400 mg. My bloodwork has been in the normal range — I need to ask him why he checks magnesium and phosphorus ...

[Tam-56 in reply to blms]

Blms, magnesium is 2.1 down 1 point from last month

[blms in reply to Tam-56]

How long on Ibrance all together?

[blms in reply to blms]

Neutrophils are important because it represents you. Newly formed white cells being produced in your bone marrow

[Tam-56 in reply to blms]

Blm, i just finished my second month on Ibrance and Letrozole. Minimal side effects so far... funny metallic taste...thinning hair..get tired in the third week of ibrance.

[blms in reply to Tam-56]

My first month was by far the most difficult. The 125mgs was too hard on me,- constant nose bleeds , exhaustion out of control sleeping 12 hours at nite etc. when I was dropped to 100mgs. Life got easier, nise bleeds stopped and began to sleep closer to normal about 9 hours. Now able to stay awake later and sleeping closer to 8 hours and able to walk 2 miles a day. So I feel more normal. I do take a lot of vitamins and the only counts out if normal now are my MCV snd MCH because of my bone marrow consistently being suppressed

[Bluebird77]

Every month but my oncologist tests CA2729 and CEA.

[Tam-56 in reply to Bluebird77]

Bluebird77, I guess we are all different but all in the same boat!

[Clair19 in reply to Bluebird77]

He does Ca 2729 only like you. May I ask what range you are? I was 817, now 410. I hope it’s lower when I go for Faslodex tomorrow.

[Tam-56 in reply to Clair19]

My onc doesn’t order ca 2729 unless they call it something different. Good luck with your new meds.

[blms]

Georgetown believes that cancer markers are not the best indicators as to what’s going on and scare patients with their fluctuations and the more important number us the absolute neutrophil count. Of course other red counts and others are important to monitor as well

[Clair19 in reply to blms]

They do scare the living daylights out of you. Just as scans do, but I guess that’s what they call the new normal.

[Tam-56 in reply to Clair19]

Yes a roller coaster ride!

[MMMP in reply to Clair19]

Have blood work this Tuesday- it was up last time hoping for a dip!!on my xeloda and not ready for a change-

[diamags]

Northwestern in Chicago feels the same as Georgetown in regards to the tumor markers. I haven't seen mine in a few years.

[Bluebird77 in reply to diamags]

I tend to agree...my oncologist tests my markers monthly and I have had several scares where the markers went up and then down the following month with no explanation. I don't think they are indicative for me personally but I know that they are for some people. Even though it's happened before, I always get anxious when there is an increase.

[Esl2008]

I had mine done monthly for the first few months since being diagnosed in February 2018. They continued to rise and rise, yet my first PET scan showed partial response to treatment...all lesions got smaller, so now my Hopkins dr will only test the CA 27.29 at the same time I have my PET scans (every three months). She said that TMs do not give helpful information in my case. They do, however, work for some people.

[Tam-56 in reply to Esl2008]

Esl2008, I’m glad you are responding to the medications! Are you taking Ibrance too?

[Esl2008 in reply to Tam-56]

I am on Ibrance, Faslodex, Lupron, and Zometa for bone only mets.

[Clair19 in reply to Esl2008]

It’s so funny how each center does different tests. My oncologist only did one initial Pet scan and it had so many false positives. It lit up breast, liver, spine and rt lung. Biopsy show scar tissue and RA. So I now just get Cat with contrast. The glucose is not good for me, which they use for Pet. I do get Ca 27-29 monthly. They also can show false positives, I guess even testing wants to worry us. I just follow what they tell me but being a Nurse ask to many questions.😁. Your right, different test work different for us. Each person has different DNA and our tumors respond to medicine and tests different. Good luck!

[blms in reply to Esl2008]

I’m surprised Hopkins is doing pet scans instead of cat scans

[lashinator]

My doc does not rely on those number as indication of anything but increase and decrease. I get blood tests every month. As long as my number are going down, I can stay on the ibrance and letrozle. I am starting my 5th month. Have 3 month scans, with my second one in Sept.

[Tam-56 in reply to lashinator]

I guess sometimes less info is better....we have enough on our plates....but glad your numbers are going down!