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Old 04-13-2011, 07:15 PM   #1
NanaJoni
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Location: Elizabethton, TN
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Elevated alkaline phosphatase

I'm recovering from a Strep A pneumonia and Strep A bacteremia (blood infection). Spent 6 days in the hospital - been home for a week. I went for my Herceptin yesterday which was postponed from the week before. My onc decided not to do it but to send me to a pulmonologist to rule out any underlying condition with the lungs (the pneumonia is exactly behind where my radiation treatments were). Today I got a call back from the onc saying my alkaline phosphatase is a little elevated and they want me to come back on May 2 to get it checked again. Of course, I'm terrified now of liver and/or bone mets and even something going on in the lung. Anyone had any similar experience who can give me some insights into what could be going on? I'm not sure how I'll get through the next 2 weeks til they do more tests. I know the pneumonia was opportunistic because my immune system is just shot but I had been feeling so good just before I got so sick. Now I can't walk across the room without stopping to rest. And I'm losing weight at a rate of about 1 lb a day. Mostly just terrified and not knowing how to cope...I had one tumor that was triple negative and this first 3 years are the worst for recurrence. I just hit the one year mark from my dx and surgery and feel like the other shoe has dropped on me.
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Joni -64 yrs old -
3/01/10: found lump in rt.breast
3/12/10: mammogram/ultrasnd/biopsy-invasive bc & DCIS; 2 tumors (2cm er-/pr-/HER2-& 1.8 cm er-/pr-/HER2+); grade 3;poorly differentiated
3/24/10:sent.node biopsy clear
3/31/10:bi-lateral mx.;atypical ductal hyperplasia-lft side
4/21/10:wound revision-infection/scarring 4/28/10:seromas both sides
5/21/10:port installed,TCH chemo (6 x 3 wks); Herc,-1yr; 33 rad tx after chemo
07/2010: port not working-2nd port didnt'work;3rd port opposite side.
07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
08/2010: hospitalizations w/3 of chemos; decision to stop after 4th-on to radiation in Oct 2010;Herc cont.
12/03/2010 - finished 33 rads Hooray!! cont. Herc. every 3 wks
4/2011 - pneumonia ??? Nope-radiation pneumonitis. No more Herc.
5/2011 - NED!!! port out.
8/2011 - clean PET & CT scans.Still NED
7/2012 - Still NED/very blessed.
2/2013 - 6 mos checkup-all clear. CA2729 down frm 13 to 11.
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Old 04-13-2011, 07:55 PM   #2
sassy
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Re: Elevated alkaline phosphatase

Joni,

Sorry I can't give you any information on alk elevation, but wanted you to know I'm thinking of you and keeping you in my prayers. I do think any number of things could contribute to elevated levels. I remember mine were elevated at one point, but down the next so my onc was not concerned.

Waiting for tests is the pits! Think positively!
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Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14YEARS NED!
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Old 04-14-2011, 04:39 AM   #3
Becky
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Re: Elevated alkaline phosphatase

You have just been through alot. This can be caused by a wide variety of drugs - one of them being antibiotics. You have just gotten over pneumonia and I am sure they gave you lots of antibiotics. Rest up and recuperate. I am sure the rise will drop and it was probably caused by medications. It is always scary when things like this happen in cancerland.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 04-14-2011, 06:13 AM   #4
Lori R
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Location: Evergreen, Colorado
Posts: 454
Re: Elevated alkaline phosphatase

Joni,
I have had to deal with liver mets, so I get my liver enzymes checked every 3 weeks. I've had weeks where my #s were elevated and I just knew there was a recurrance. Only to find out all was well.

So...please don't let those enzyme #s drive you crazy. The Drs are looking for a long, consistent pattern of the enzymes climbing. Not a one time spike. Too many other things at play.

I hope this provides a little reassurance....Lori
__________________
2007
Oct - Diagnosed - Stage IV
5 c.m. IDC - Left Side er/pr- Her2+++
Node + 2/14 - Single Liver Met
Double Mastectomy
Nov - Begin T+H
2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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Old 04-19-2011, 05:07 PM   #5
Adriana Mangus
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Posts: 668
Re: Elevated alkaline phosphatase

Hi Joni,

This is Adriana-- I did not sign-in today.

I have had elevated liver enzymes as well, the onc., thinks is nothing related to the bone/liver, but due to the toxicity of the TDM1 Trial drugs. The TDM1 onc., agrees with him.

I have been very apprehensive, so I completely understand you, it does not matter what other people say to us, it's our body and so its natural to feel the stress of not knowing the reason for those high marks. I asked my onc., here where I live to order a bone scan--just in case. I had it done today. Just like you I'm a nervous wreck!!! Waiting and waiting until I hear from the doctor. Stressful!!!!!!!!

I can only say this to you: Stay positive, try to go for walks,--even a short walk outside your house it would do wonders to your well being. Hang in there my friend!

Please keep us posted.


Much Love to you,

Adriana

P.S. I drive to Higland, Ca for the TDM1.
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane

Last edited by Adriana Mangus; 04-19-2011 at 05:14 PM..
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Old 04-23-2011, 08:35 AM   #6
NanaJoni
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Posts: 418
Re: Elevated alkaline phosphatase

Adriana - thanks so much for the response. Sorry I didn't answer sooner but have been back in the hospital for the last five days and came home yesterday. The liver enzymes are coming back down and I had an abdominal ct scan on Wednesday that was completely normal. Good news there. As it turns out my more serious problem is with my right lung. What had been thought to be pneumonia several weeks ago turns out to be some permanent scarring/damage. I had a bronchoscopy last week, too, and it didn't show any lesions so lung mets are probably not the problem - it could be from the radiation I had in that area or even from Herceptin (or a combination of the two). I've got some additional testing to be done. For now I'm on oxygen at night and very limited activity but hoping things will improve. It seems like one of those domino displays - treating one thing causes some other problem. Just a day at a time for now, I guess. Going to enjoy the beautiful weekend here in the mountains of East Tennessee. And as always, I'm so thankful for the wonderful people on this site who are so generous with their care and kindness.
__________________
Joni -64 yrs old -
3/01/10: found lump in rt.breast
3/12/10: mammogram/ultrasnd/biopsy-invasive bc & DCIS; 2 tumors (2cm er-/pr-/HER2-& 1.8 cm er-/pr-/HER2+); grade 3;poorly differentiated
3/24/10:sent.node biopsy clear
3/31/10:bi-lateral mx.;atypical ductal hyperplasia-lft side
4/21/10:wound revision-infection/scarring 4/28/10:seromas both sides
5/21/10:port installed,TCH chemo (6 x 3 wks); Herc,-1yr; 33 rad tx after chemo
07/2010: port not working-2nd port didnt'work;3rd port opposite side.
07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
08/2010: hospitalizations w/3 of chemos; decision to stop after 4th-on to radiation in Oct 2010;Herc cont.
12/03/2010 - finished 33 rads Hooray!! cont. Herc. every 3 wks
4/2011 - pneumonia ??? Nope-radiation pneumonitis. No more Herc.
5/2011 - NED!!! port out.
8/2011 - clean PET & CT scans.Still NED
7/2012 - Still NED/very blessed.
2/2013 - 6 mos checkup-all clear. CA2729 down frm 13 to 11.
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