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Old 08-28-2007, 11:53 PM   #1
Chelee
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Unhappy Upper back/spine pain? (Mets?)

I had an appt this last Monday with my onc. I mentioned my upper back pain which is exactly in the MIDDLE of my back where my bra strap hooks. Its *bone* pain. I did alot of research online about upper back pain and what causes it? I find its *not* very common to have upper back/thoratic pain. Since its actually my spine that hurts its has me concerned. I'm sure you know what crosses my mind.

It constantly hurts and it never goes away. My last PET/CT was in 5-7-07...both scans were clean. Do you think in just 3 months I could have bone mets? Maybe the PET/CT missed it? The ONLY other thing I can think that's different is I had that prophylactic mastectomy in March. So I have been trying to convince myself NOW that BOTH breast are gone its thrown my body off balance and is the cause of this pain?

This is the 1st time my onc actually suggested a MRI of my back WITHOUT me having to ask. (A shock!) I thought she would go CHEAP and say x-rays. I also told her I've had a BAD headache for a month & I was due for a brain MRI 2 months ago. So NOW I have to WAIT till 9-10-07 to get both MRI's. I get both the SAME day thank goodness. I pray they come back clean. Does anyone know if you can have mets to bone so quickly? I was just scanned in May...but had my prophylactic mastectomy in March as I mentioned. My spine pain started about a month & 1/2 ago. Could the PET of missed it? Any encouraging words?

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 08-29-2007, 07:18 AM   #2
doh2pa
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Chelee,

I too have had back pain which seems to settle in one area, my scapula. It comes and goes and I too am concerned. However, I had a bone scan in May, PET and CAT's too and everything is fine. Could it just be the aches and pains of old age? Could it be a side effect of any meds you might be on? We all jump to conclusions, but there really are a lot of other things it could be. So keep a good thought. I know you are very anxious about this, but you are a warrior. Whatever it is, you will deal with it. That's how I get through the "pre scan anxiety". I tell myself I don't "know" anything till I know and worrying about it will not change it. Life's too short and precious to spend it worrying about things I cannot change.

Wish I could offer you more. Please keep us posted.
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Donna
Diagnosed 2/04 - Invasive ductal - no clean margins
node negative - er+pr+, her2++
Mastectomy 4/04 - 4 rounds AC
9/05 - mets to liver treated with carbo/ixabipelone/herceptin
3/06 - complete remission
9/06 - new liver mets, starting Taxotere/Herceptin
1/07 -Liver mets stable, staying on Herceptin
5/07 - Liver, lung progression - starting T/X
12/07 - Liver, lung progression - starting weekly Navilbene/Herceptin
4/08 - Liver progression - started Abraxane, Carbo, Tykerb and Herceptin
7/08 - Liver Progression - started Gemzar, Avastin and Tykerb
10/08 - Liver progression - starting Doxil
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Old 08-29-2007, 08:00 AM   #3
Brenda_D
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When I visited the doctor (doc's assistant that time) to have an EKG done, I told her about pain I was having in the center of my back, right between the shoulder blades, and she didn't seem concerned.
I've also been having headaches. I had bad one yesterday, but I figure it's from the Herceptin.
Hope you figure your's out soon.
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12/12/06- IDC Stage III, 4x A/C, 35 rads, Herceptin 1 year
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Old 08-29-2007, 10:42 AM   #4
chrisy
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Chelee, I've had back pain where you describe from time to time in the past - it could very well be nothing, maybe you bumped into something EXACTLY on the clasp area of your bra and "bruised" yourself. Or maybe tweaked it somehow.

But it would be wise to check it out. Why and MRI instead of a bone scan? I would think a bone scan would be better than MRI as the contrast is one that bones like to uptake. Plus, it's very slow and quiet so you can get a nice nap in.

Hope it is nothing!
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June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 08-29-2007, 02:54 PM   #5
dorinda
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Chelee. I Know For Sure Herceptine Does Cause Headaches. I Too Was Having Headaches A Couple Of Months Ago And The Onc. Ordered A Mri For The Brain And It Came Out Clean. Thank God!!!, So Your Headaches Could Be From The Herceptine. As For As The Back Pain, My Was In My Lower Back And I Just Thought It Was A Kidney Infection Cause I Had That Plenty Of Times.the Onc Did A Bone Scan And Found My Mets. I Am Sure Yours Is Proably From Your Recent Surgery Since It Is In That Area. Can You Get A Sooner Appointment. The Waiting Will Mess With Your Mind. I Know!!i Will Pray For You And Send Positive Thoughts Your Way. Keep Us Posted. Take Care Dorinda
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nov 2006 dx. with bc. 3 tumors removed from left breast lumpectomy done. her2 postive er+pr-. scans showed extensive spine mets(to many to count) ,3 tumors on left rib,one tumor on skull and 3 tumors on liver. stage IV from get go. dec.2006 started chemo taxol and herceptine wkly. zometa monthly. rescanned in march 2007, liver tumors shrinking a little. bones to early to tell but pain is gone in my back. rescanned in june 2007. liver mets gone, bone scan looking better but still alot in my spine. still on taxol and herceptine. zometa monthly. rescanned in august due to ca 2729 going up. liver still good , mets in ribs and skull gone but multiple areas still on lumbar and sacrum. mri of brain august 07 negative for mets.I AM BELIEVLING GOD FOR MY HEALING.
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Old 08-29-2007, 08:09 PM   #6
Chelee
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doh2pa, I am currently *not* on any meds that I can blame this on darn it, or I would. lol I've been off herceptin since March & my onc still doesn't have me on an AI. (Long story!) Its only been 3 months since my PET/CT...just like you. So maybe its just from having the prophylactic mastectomy? It does seem like it showed up not long after that? I was just hoping maybe this is common with women that had bi-lat mastectomies occasionally? And your right...I'm not going to sit and worry about it as it doesn't change a thing. I will deal with it when and if I even have too. I am thinking positive...its going to be because of my recent mastectomy.

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 08-29-2007, 08:24 PM   #7
Chelee
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Chrisy, I haven't bruised it or slammed into anything lately. (Keyword is lately.) lol It is definitely the spine that hurts. I'd feel better if it was the muscles or joints & not bone pain. We did get a new couch and it does sit higher & I've also wondered if its because I am sitting different now? I sit with my laptop on the coffee table at times and kind of hunch over. Maybe its put stress on the bones? (I'm reaching for anything here...can you tell.) lol

Your question about the MRI is a good one. I wondered that myself? I thought she would say x-rays or bone scan. I'm not sure why she ordered a MRI? I usually have to FIGHT for a MRI...it was strange how quickly she suggested that. Maybe she was afraid since I *just* had a PET/CT in May the insurance company might give her a bad time? I haven't a clue. She probably made up something else to get the MRI ok'd. I just want the most accurate test to find out WHAT is causing this pain...it really is making me misrable. (I liked your comment about the nap.) lol I laughed...but that part is so true! Thanks Chrisy.

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 08-29-2007, 08:24 PM   #8
Barbara2
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You finished herceptin 5 months ago although it is supposed to stay in your system for quite a while (a couple of months, maybe??) after treatment is finished. Headaches can be a side effect from Herceptin. Has it been a constant headache?...or breaks in between?

Have you had any xrays in the past that show arthritis or deterioration of any disks in your spine?

Have you tried Aleve or Motrin?

When I have aches or pains, I put a heating pad on the area that is sore, and it often helps. There have been articles about heat zapping cancer...I'm sure it's not heat from a heating pad that has been used in these trials!...but in my mind I think it might help, somehow, so I keep the heating pad beside the bed and use it quite frequently after going to bed.

How does your blood work look? The liver enzymes may go up if a person has bone mets.

Hope these troubles go away for you.
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Blessings and Peace,
Barbara

DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.

Accepting the gift of life, I give thanks for it and live it in fullness.

Last edited by Barbara2; 08-29-2007 at 08:29 PM.. Reason: Need to add a comment
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Old 08-29-2007, 08:59 PM   #9
Catherine
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Just to try and rule out everything...Be very careful about posture. Are you stretching every day? I am 59 and try to stretch at least once a day. I too work on a computer, but have a good desk. Try not to scrunch over your laptop. Do you exercise, do you walk?

Glad you are getting tests. I would wonder too. Please keep us posted.

Catherine
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Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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Old 08-29-2007, 10:05 PM   #10
Sherryg683
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I don't want to blame everything on shingles, but about a month before my huge outbreak of shingles, I had this terrible continuous pain in my spine right about where you say yours hurts. It was more on the right than left side. It was this dull throbbing pain. Then when I broke out in the shingles it was radiating from that spot. I have read that some people will get this type of pain a month or two before the initial break out of the shingles. I was also told recently that I have arthritis, maybe this could be your case also. My bone MRI's were clean and boy do I have pain in between my shoulders in my spine..sherryg
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Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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Old 08-30-2007, 03:09 PM   #11
tricia keegan
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Chelee I had really bad back/spine pain early this year and felt it was mets..or arimidex. I had both a bone scan and dexa and the latter showed some bone loss around my spine. I now take fosamax. Could this be another possibility??
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Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 09-05-2007, 10:06 PM   #12
Dianaq
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Back pain

I too have had alot of back pain. I had some back pain before the cancer. Now it is alot worse. I also had shingles right after my surgery. In some people the side affects after this is nerve damage. It can last for months to years. Most of my pain is where the Shingles were. But it is all lower back. I also take Herceptin and Tamoxifen. And... have some arthritis in my lower back. I am not quite sure why it has amplified. Hang in there.
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Old 09-09-2007, 01:59 PM   #13
Chelee
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Barbara, Yes its a constant headache...that's what concerns me. But hopefully the stress from my Mother passing away too much *online* reading is causing it? I go to bed with a headache & wake up with one. As to my back a few yrs ago I had pain so my Neurologist ordered x-rays & it did show degenerative disc disease in my lower spine. But *nothing* in my upper back. I just don't understand why this would come on so fast?

One thing you mentioned that has been worrying me a bit is my liver enzymes have been up several times on my CMP & my onc doesn't seem to care? I just asked her again this last time why she isn't concerned with that! She said she is keeping an eye on it & if anything was really wrong my liver enzymes would really shoot up? (I would still like to know *why* they are always high?) My *ALT* & *AST* are always elevated? Not real high, but enough to get my attention.

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 09-09-2007, 02:20 PM   #14
Chelee
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Sherri, I'm not sure about shingles, but I do see so many women that have shingles after going through chemo...seems to be very common. I have pain inbetween my shoulders & spine as you mentioned. I am sorry you have that pain...but it kind of helps to know your bone scan came back clean.
I wonder how much the chemo itself destroys bone? One thing that really makes me wonder about this is it came on after my prophylactic mastectomy. I really need to watch my posture like Catherine mentioned. I haven't been sitting up straight like I use too. Plus with the heat we had here in CA I don't think I was doing enough. (I think I now have enough things to blame it on to relieve my mind.)

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 09-09-2007, 02:26 PM   #15
Caroline UK
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Smile Headaches

Hi Chelee, I'm sorry to hear of your worries. On just the headache issue, I wondered if you might still have dried up sinuses from the Herceptin, even though you finished it a few months ago - I imagine it might take the body quite a while to start producing the cilia cells again that moisten and waft the dust away. I get worse headaches when I'm aware my sinuses are feeling dried out. Maybe it'd be worth trying steam inhalations two or three times a day for a couple of days and just see if that helps, especially just before you go to bed, together with some relaxation tapes perhaps. Maybe even a light massage with a few drops of lavender oil added, if you can persuade someone to do that for you.
Of course you're going to worry, and it's good that you're getting everything checked out.
Wishing you all the very best
Caroline
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Caroline
Diag. March 10th 2006, aged 46.
Invasive ductal carcinoma, 2cm + multifocal. Stage 2, Grade 3
HER2+++, ER+/PR+
Right mast. May 2006. 6 of 20 nodes positive
FEC x 4, taxotere x 4; port implanted after 6 cycles
Rads x 25
1 year of Herceptin ended Nov 07.
Arimidex 5 years

Considering reconstruction, maybe soon...
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Old 09-09-2007, 02:50 PM   #16
Chelee
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Caroline, I wonder how long herceptin does stay in the body? I've been off it for 6 months now. But I did just recently see my doctor because my lungs & sinuses were SO congested. It was nasty whatever it was! My Primary gave me some antibiotics which cleared it up. So maybe its left over from that? Even my surgeon looked at me one day & said, "You got the CRUD don't you"! I was using that *theraflu* at night to dry things up. You may of just hit on the best reason for this non-stop headache. Maybe their too dry now. I think I'll try the steam idea and see if that helps. That just might do it. Thank you.

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 09-09-2007, 08:08 PM   #17
Barbara2
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I hope the sinuses are the problem, Chelee. That would be great.

About the liver enzimes, my enzimes seem to be creeping up and one time the AST or ALT (Can't remeber which one) was a little over the high end of normal. My onc said those numbers weren't really that high...that some people have REALLY high numbers...etc. To which I replied, yes, but those people are in trouble! He agreed.

But he then added, that Her2+ is aggressive..that my enzymes had been in the high end of normal for quite a while, and if it was breast cancer related, it would have taken off by now. Hope he's right....

I had a MRI of the liver, then, and it was OK. The enzymes can also rise due to bone mets, I believe, so that is also in the back of my mind.
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Blessings and Peace,
Barbara

DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.

Accepting the gift of life, I give thanks for it and live it in fullness.
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