Bloodwork is Low at 1 yr Ann

Divine1 · Posted: Thu Dec 16, 2004 11:54 am Post subject: Bloodwork is Low at 1 yr Ann

Hi everyone!
I saw my Oncologist yesturday and we talked about having my Port removed, He Said No not till 1 yr from the treament, which that puts me to May.
I had my blood drawn like I always do and it came back where my WBC and RBC are Low and I had to be given a shot of Procrit.
I have been alittle sluggish but I didn't think I needed a shot!
My Hgb and PLT HCT are low this makes me very worried that something elese is gonna happen now..
I was diagnoised the 18th of Dec with BC.. But to date all clear..
Well I may be worring about nothing at all.
If anyone has experianced this please let me know!

Happy Holidays!
Hugs::
Tammy
_________________
Tammy 43 yrs old ,Wife to Doug for 25 yrs
Mom to two kids, Comp Hyst 1/90
Ant, Post Fus 10/02,,Cerv Fus 8/03 Dx. Lob B/C 12/18/03 19 nod Neg Stge 2, ER Post. Mast lft w/expan, Rt Mast 6/03 imp. 11-03 Imp Finished .7/03 Arimidex 5 yrs.

DiO · Posted: Thu Dec 16, 2004 1:35 pm Post subject: low blood counts

Looks like we were diagnosed about the same time--mine was 12/8/03 and my surgery was 12/18, IBC, stage 2, 1 positive node, er/pr+. I had lumpectomy, 4 AC, 4 taxol and am now on Arimedex for 5 yrs. It's hard to have the usually happy holiday prep remind us of the all the anxiety and dismay we were suffering at this time last year! At my last check up end of Oct my WBC was still low, although not terribly so--3.4, normal being 4. Onc says that may be a "new normal" for me. RBCs have been fine. Hope you and everyone enjoy the holiday season!
_________________
God Bless, Di

IDC 12/03 at age 55
lumpectomy, SNB 12/18/03
2cm tumor, 1/6+node, stage 2, grade 2 er/pr+ her2nu-
4 AC, 4 taxol, dose dense
33 rads
Arimidex started 7/04

penelopez · Senior User Joined: 11 Oct 2004 Posts: 165

Tammy's post about having blood drawn and checked made me wonder about this AGAIN.

I finished chemo 13 months ago and finished rads 10 months ago. I have not had any blood drawn since 3 weeks after I finished chemo (last December). Is this normal? I was treated for Invasive Ductal. Who gets blood work and who doesn't? I'm just curious if I'm the only one that never gets its? I see my radiation oncologist January 12. Should I "insist" on it? I don't see my medical oncologist until next August. Also, I've been on Tamoxifen for a year. Should blood be checked for that, too?

Thanks,

Margie

Kristen · Experienced user Joined: 01 Nov 2004 Posts: 60

Hi all,
I always wondered this myself. I was one year from chemo on 9/24/03 and completed rads 12/30/03. I have never had any blood test at all. The last one I had was after my last chemo because I was going away and the doc wanted to make sure my numbers were good ( I had to continue taking the nuprogen even though I was done chemo)...Other than that at my oncol visit every 3 months they do nothing.
Although I go to they GYN every six months because of the tamoxifen and she ran a blood test to see if I was anemic because I had been feeling tired. But that came out OK!
Kristen

penelopez · Senior User Joined: 11 Oct 2004 Posts: 165

Kristen ~ Thanks for responding.

I had the chemo every 3 weeks and didn't have my blood checked about 10 days after the treatment. Everyone in my support group who had the chemo every 3 weeks had their blood checked then to see if they needed a "booster" so their counts would be up and they would not have their chemo off-schedule. As a result, I was not able to take my last chemo on schedule. I don't understand the disparity in treatments and follow-ups. Anytime I voice my concerns to this doctor he just blows me off. I am so confused as to what is "normal" for bloodwork and follow-up.

Hugs,

Margie

AlaskaAngel · Posted: Thu Dec 16, 2004 4:11 pm Post subject: Checking CBCs and such

I live far from my onc so haven't had hardly any contact with him after completing chemo and rads, but right after rads was done I did have an appointment with him and a CBC was automatically done with that appointment.

The docs I know here in my home town see bc patients the first 2 years every 3 or 4 months and a CBC is always done with those appointments. The docs differ more in terms of having marker blood draws, some do and some don't (but the ones with the most experience and training do). After the first 2 years post-treatment, the docs here see bc patients every 6 months for the next 3 years.

I am 2 years out from chemo and rads, and my blood counts are still just below normal. I have re-read every book and pamphlet I had at time of diagnosis and none of them provide any warning that this is going to be normal after chemo or rads. I do feel that not being told this could happen is just as bad as lying about it, since the blood cell counts are major parts of our immune systems and the immune system is pretty important for those who do end up dealing with recurrence.

My focus in dealing with the low counts has been 3-fold. I try to have a tiny piece of liver twice a week to provide more iron (and more alpha-lipoic acid). I try to get whatever direct sunshine I can for 15-40 minutes a day (which is not often in Alaska in winter but I do the best I can, as I think bone health promotes blood health). And I try to get 20 minutes a day of some aerobic exercise.

My blood counts improved somewhat at the end of 3 months of concentrated effort to do those things. However, recently they have been dropping again, perhaps due to the onset of winter or perhaps due to something related to the mysterious rise in liver enzymes.

If I were you I would ask for a CBC and liver enzymes to be done at least yearly if not every 6 months. Mine are done quarterly and I am NED, Stage 1, HER2+++.

Minnlady13 · Posted: Thu Dec 16, 2004 5:39 pm Post subject: Re: Bloodwork is Low at 1 yr Ann

Congratulations on reaching that first year anniverary to Tammy and Di. And, Di, welcome to the board. Glad to have you here, but sorry for the need.

Margie, my onc has blood drawn and tests done every time I see him. For five years it was every six months. Now, it is annually. I would think that your doc would have run blood tests since you finished your chemo. Lauri
_________________
Diagnosed 4/11/1996
Lumpectomy, 6 mm tumor
Neg. nodes
ER/PR+
33 rads
Tamoxifen, 5 yrs.
NED

Muttsmom · Posted: Thu Dec 16, 2004 7:02 pm Post subject: Re: Bloodwork is Low at 1 yr Ann

I'm really surprised that your oncos aren't doing bloodwork everytime you see them. Once I was done with treatment, I saw my onco every 3 months for a check up which included CBC w/diff and CMP (Complete Metobolic Profile). After a year and I was still NED, he still did those 2 along with the CA27-29. I will go on Valentine's Day next year, which will be 3 years to the day that I was dx. and I'll have them all done again. I'll go to every 6 months (if my anxiety level can handle it) and still will have labs done. Ya'll are the 1st ones that I've heard of that didn't have labs during each check up.
During chemo, I had it done 2 weeks after my FEC and then of course the next week, which was my chemo week. My 1st treatment he did every week to see how my system responded to chemo as far as my levels rebounding on their own. Since they did and I didn't have to get the shot for red or white counts, then it was 2 weeks after and the day of chemo.
I really can't think of a logical reason that you aren't getting labs done. They show the liver enzimes, kidneys, calcium and so many things that they need to know as far as reocurrences go, along with you telling them how you're feeling.
I'd ask WHY when I saw them again.
Nancy
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

penelopez · Senior User Joined: 11 Oct 2004 Posts: 165

AA, Lauri and Nancy ~ Thank you all for taking the time to respond.

The last time I saw my medical oncologist was the first week of August and I was 6 months out of rads. He told me to come back in a year. Does that sound right????? I realize I have a good prognosis (node-negative and HER2neu- and ER PR+). I have some really good prognostic factors. BUT sometimes he acts like I just got over the flu or a bad hang nail. I asked him about bloodwork in August and he said "Why, if you're feeling really good?"

Anyway, I do see the radiation oncologist on January 12. This is the first time I am seeing this doctor as the one I saw during radiation has just retired. He is young and out of Harvard and Yale so I'm hoping he is more up-to-date on everything. I have a list of questions and intend on having a nice long discussion with him. I'm hoping I can arrange it so that I can just bypass the medical oncologist and see him instead.

Did I mention that at my six-month follow-up the medical oncologist did not even check the lymph nodes under the arm or on the neck? Doesn't that sound strange?

I live in rural Maine and there is a shortage of doctors and dentists. He is the only oncologist in town.

Anyway, I'll let everyone know how it goes on the 12th. Again, thanks.

Hugs,

Margie

Muttsmom · Posted: Thu Dec 16, 2004 10:12 pm Post subject: Re: Bloodwork is Low at 1 yr Ann

I'd check on going out of town to another oncologist. At the time I was dx, I lived in a small city and drove an hour each way (or had someone drive me) not only for the surgeries but also chemo and rads.
I realize I was Stage III and that along with my age but me high risk for a reoccurence, but I was er/pr+, her2- and had all the bone scans, CT scans, etc. before I started treatment so they knew it hadn't gone past the nodes. Everyone I know, even stage I goes every 3 months in the beginning and for 2 years, then they go to every 6 months for 3 years and then yearly.
Not to scare you and by what you are saying, your chances are good of not having a reoccurence, but I've known stage I with no node involvement, tiny tumors and had a mastectomy and chemo, just to better their odds and have had reoccurences.
Seriously look for an onco outside your city. If he's blowing you off like you had a cold, that can't be comforting for you at all and God knows this isn't a cold and until there is a cure, no one is guarenteed not to have a reoccurence. You deserve the best care possible and you're not getting it. You have to be your own advocate and demand good care. It's your life and if yours doesn't seem to care about it, you do and we do!!!!!!!
I lost a very close friend this month and her care compared to mine, sucked. She was stage III like me, but things they did and didn't do, compared to my care and treatment, they never gave her a fighting chance.
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

penelopez · Senior User Joined: 11 Oct 2004 Posts: 165

Thanks, Nancy. It's nice to know that I'm not being cancer-paranoid. I have been trying to watch myself like a hawk. Each month I do the BSE. It's easy to feel what's normal on the "good" breast but not so easy on the other breast with the scar. There are a couple of "bumps" above the scar and everything there just feels so different and it's hard to tell what feels normal. I'll see the new rad onc. on the 12th and see what he says. Then I'll go from there. We don't even have breast specialist in our state.

Honestly, sometimes I've gotten so damn depressed over it all I'm just half tempted to toss ALL the follow-ups and stop going to any damn doctor and monitor myself as best I can. I don't think I've had one good doctor through this entire experience. I'm just getting so tired.

Thanks to Nancy and everyone else for listening to me.

Hugs,

Margie

Muttsmom · Posted: Fri Dec 17, 2004 1:59 pm Post subject: Re: Bloodwork is Low at 1 yr Ann

Hi Margie,
The last thing you need on top of everything else is to feel frustrated at the care you're getting. God knows, we have every other kind of emotion possible going. A friend of mine lives in a real small city in CA and her doctor was the opposite of yours, she had to go every 6 weeks which is insane. Why don't they give us all an endless RX for xanax if they are either going to not go by protocol and not do anything or overkill and keep everyone in knots.
When I go, not only do I get all the labs done, but he pokes and prods until I'm ready to smack him... lol I opted for a double mastectomy, just at different times, so I would guess it would be more obvious to the eye if I had a lump then someone that had a lumpectomy, but either way, mine checks not only my chest wall and under the arms, but my neck where the nodes are and pushes around my liver area.
I hope you really like your new rads onco and don't hesistate to ask him for a referral outside the immediate area for a medical onco, because you do need one of those. NEVER settle, you are too important to too many.
Hugs
Nancy
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

penelopez · Senior User Joined: 11 Oct 2004 Posts: 165

Nancy ~ Again, thanks for your kind words and support. It means a lot.

When I went for the 6-month follow-up in August NO neck nodes or underarm nodes were checked. He did a VERY QUICK prod and poke on both breasts while I was lying down, but not sitting up. My cancerous tumor could only be felt while I was sitting up, not lying down. Confused

He DID check the liver area, but I really wasn't expecting any problems there. I think an important thing to watch for (after a lumpectomy) is a local recurrence near the scar or somewhere in the breast. He just seemed in a big rush. Mad

One thing's for sure - even if I do change medical oncologists I intend to go to that appointment in August, say a few things on my mind and get the last word in. Maybe even say those famous Trump words...."You're fired!" LOL Oh, that would be fun!

Anyway, I will post a complete update after my appointment on the 12th.

Hugs,

Margie

Muttsmom · Posted: Fri Dec 17, 2004 8:04 pm Post subject: Re: Bloodwork is Low at 1 yr Ann

Hi Margie,

ROFL Maybe even say those famous Trump words...."You're fired!" You go girl.
When I had my 2nd mastectomy and attempted reconstruction, they sent the scar area to pathology when they cut me open again for the expanders to check for a local reoccurence, so yes, that is something they look for. I'm not trying to scar you and this has a very good ending, so relax.... trying to tell you the end of the story which is good Smile

A friend of mine had a lumpectomy and 4 years later (just this past Oct) she found a lump again in the same breast. It was cancer BUT it was a local reoccurence as well, so she had the mastectomy and no more cancer was found in any of the other breast tissue. So your onco does need to check both breast equally as well so if it comes back as a local, it stays local.
I might want to smack mine for pushing so hard, but I know that he's doing it so he's confident that there is nothing there, so I'll forgive him. Smile

Take care and we'll talk soon
Nancy
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

Minnlady13 · Posted: Fri Dec 17, 2004 9:16 pm Post subject: Re: Bloodwork is Low at 1 yr Ann

Margie, I would be wondering why my onc is not doing regular and routine blood tests. I had a super good prognosis, too, and still saw my onc every six months for five years. He had blood tests done every time I came in. There may be no reason to suspect anything, but the blood tests will make sure the docs spot any changes quickly.

You may want to seriously consider finding another doctor, if it is not too much trouble. Doesn't sound like this one is very concerned about you, IMHO. Otherwise, tell the onc. that you want blood tests done on a regular basis. Good luck. Hugs, Lauri
_________________
Diagnosed 4/11/1996
Lumpectomy, 6 mm tumor
Neg. nodes
ER/PR+
33 rads
Tamoxifen, 5 yrs.
NED

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