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09-29-2009, 11:56 AM
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#1
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Had my Herceptin/Zometa infusion
yesterday. (Flu shot too.) My regular chemo nurse wasn't there darn it, so I had some new one that seemed so unsure of herself...kind of worried me. She kept jabbing at me till I had her get the head nurse that got me set-up in one try. But we got it in my hand and I managed to get my loading dose of Hercepting & Zometa.
I felt very tired after that yesterday...extremely. But came home to rest. But the strange thing is I woke up this morning around 5:30 AM and I was shaking and shivering...my teeth were actually chattering. I could not get warm and just layed there under my blankets freezing for two hours till I had to get up. I'm fine now..but don't know if it was from the Herceptin or Zometa...maybe the combination of? Anyone else ever had this problem?
Also I'm having extreme lower and upper back pain. It's just killing me! I've taken my pain pills and it hasn't helped at all. Is this from the Zometa I will assume? If so...will it go away soon...I can't take it. I'm so misrable right now.
Chelee
__________________
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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09-29-2009, 12:08 PM
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#2
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Re: Had my Herceptin/Zometa infusion
Hey Chelee, remember to drink tons of water! Back pain may go away with enough water! Mine always did! Glad you got #1 done! ma
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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09-29-2009, 12:12 PM
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#3
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Had my Herceptin/Zometa infusion
Dear Chelee -
So bummed to get home and see you have another go-round with this darn disease. You have been very good about your followups, and it does pay to stay on it.
About your "shaking chills." That is what happened to me with my loading dose of Herceptin and others have reported the same. This is mentioned in the possible side effects and seems to occur fairly often. I only had this with the loading dose, but I thought I NEVER would get warm! Used heating pad, drank hot tea and put on 2 pairs of socks!
As for the back pain, this could be the Zometa. I don't believe I could attribute such pains to Herceptin in my case. But I did have some joint discomfort from the Zometa. That pain should lessen fairly quickly. I think I took Aleve and that was all I needed to get those pains "under the radar."
Within a couple of days your body should be able to handle this first blast of treatment. Also, remember that sometimes pains can be a sign that the drugs are working at the tumor sites.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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09-29-2009, 12:24 PM
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#4
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Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
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Re: Had my Herceptin/Zometa infusion
Hi Chelee,
Zometa can give you flu-like symptoms, including fever. The day after my first infusion I felt a little achy and my knee was hurting more than usual. I made myself walk (for exercise) and ended up limping. My knee got progressively worse and after about 5 days it swelled up more than twice its size and I had to have fluid drained. My onc, surgeon and orthopedic surgeon did not think the Zometa caused it. I saw a rheumatologist a few weeks later who was pretty sure it was related to the Zometa - I tend to agree with him due to the timing. The good news is that I have had two more infusions and haven't had any side effects. As for the chills, Herceptin always gave me chills - even between infusions. I could never get warm; it seemed to come from the inside and even lots of blankets did not help.
I hope you are feeling better soon.
__________________
Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
********** Enjoy the little things, for one day you may look back and realize they were the big things. - Robert Brault
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09-29-2009, 12:27 PM
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#5
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Re: Had my Herceptin/Zometa infusion
Are you gals getting Zometa for bone mets?
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09-29-2009, 01:16 PM
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#6
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Had my Herceptin/Zometa infusion
Good question Rich, I know Chelee is but wondered about others
Ellie
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09-29-2009, 01:49 PM
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#7
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Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
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Re: Had my Herceptin/Zometa infusion
When I switched from Tamoxifen to Femara I asked for a baseline bone scan to check my bone density (since AIs tend to cause bone loss). I was told that I already had osteopenia of the lumbar spine. My onc wanted to start me on Actonal but I had read about the benefits of Zometa and Femara so I requested to add Zometa. She agreed to let me give it a try. I changed oncs in Jan of 09 and my new onc approved of the combo.
__________________
Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
********** Enjoy the little things, for one day you may look back and realize they were the big things. - Robert Brault
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09-29-2009, 06:13 PM
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#8
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: Had my Herceptin/Zometa infusion
Chelee,
I am so sorry you had a rough go with the IV and then the infusion. I am betting the back pain is from the Zometa, which I hear gets better with each infusion. Of course, you must have been very stressed as well, so I suppose the pain could be exacerbated by the tension.
Praying you get immediate relief from all discomfort.
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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09-29-2009, 06:59 PM
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#9
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Had my Herceptin/Zometa infusion
Dear Chelee
I started Zometa after I was already 4 months into Herceptin. When I received my first Zometa, of course it was also with a Herceptin treatment but the next day, I had flu-like symptoms (like Gerri said) but I actually had a fever of 101. You probably did too. I promise you this symptom will never happen again. Also, I had bone aches and so does my mom when she gets her Zometa.
Hang in there baby. You're doing good and the Zometa symptoms will get less intense.
Love and hugs
__________________
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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09-29-2009, 08:57 PM
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#10
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Had my Herceptin/Zometa infusion
What an experience !! I hope you are feeling better now.
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09-29-2009, 09:19 PM
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#11
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Had my Herceptin/Zometa infusion
Hi -
Rich, I was getting Zometa for a "shadow" and as preventative once I finished my chemos for liver mets. I took it for quite a long time on the every 3 week basis! It did toughen up my bones.
Chelee - I note that you also got a FLU SHOT, which can also cause some mild flu-like symptoms. I think you just had an overload yesterday with all three things at once.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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09-30-2009, 12:31 PM
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#12
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Senior Member
Join Date: Aug 2009
Location: Owasso, OK
Posts: 185
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Re: Had my Herceptin/Zometa infusion
Chelee...pay not attention to my other post. I didn't see that you posted something new. I hate to hear that the IV didn't go well, that's always miserable, but do appreciate the update. I've also had chills while on Herceptin.
Take care and keep us posted.
Hayley
__________________
Hayley
Oklahoma
3/35/2009 - Diagnosed, age 39
5/7/09 - Mastectomy and reconstruction started. Two tumors found. Tumors were side by side. DCIS tumor was 2.8 cm, ER-, PR-, grade 2. Invasive tumor was 1.1 cm, poorly differentiated, grade 3, ER+90%, PR+95%, HER2+3. Thankfully, no node involvement.
5/29/09 - Second surgery resulting from difficulty healing from mastectomy.
6/2/09 - Began Herceptin treatments
6/23/09 - Began Taxotere and Carboplatin treatments along with Herception every 3 weeks.
10/06/09 - Completed Taxotere and Carboplatin - Yeah!!!
10/27/2009 - Herceptin maintenance and began Femara
12/10/2009 - 2nd stage reconstruction surgery
2/2010 - Body rejected saline implant
3/18/2010 - Second stage reconstruction using silicone implant
5/4/10 - Completed Herceptin - YEE-HAA!
May '10 - Body rejects silicone implant...taking a break.
11/29/10 - Hysterectomy
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09-30-2009, 02:43 PM
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#13
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Had my Herceptin/Zometa infusion
I don't remember waking up freezing the 1st time I did Herceptin...but that was over 3 yrs ago....maybe I just don't remember it? But I see several here have experienced it. I read a couple of the older Herceptin threads and it was mentioned. It must be due to the larger loading dose as Becky said. I'm glad to hear it won't happen again...that was awful.
Rich66, Yes...I got Zometa for bone mets. It looks like I should of been getting it at least 2 yrs ago.
As to the upper & lower back pain it most likely was Zometa...I was beyond misrable yesterday. But I had my port placement yesterday and they gave me some good drugs while I was on the table. Those drugs got rid of the pain...temporarly anyway. But today it's much better thank goodness & almost completely gone. Now today it's this port that's killing me...I swear it's always something in cancerland.
Chelee
__________________
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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09-30-2009, 03:55 PM
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#14
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,809
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Re: Had my Herceptin/Zometa infusion
Chelee,
Did I read that you have recurrence on your chest wall? If you (or anybody else) do, you might want to contact Jeanette about this trial.
Recurrent Chest Wall Cancer after Mastectomy -
New Breast Cancer Clinical Trial

If you are experiencing breast cancer with recurrence to the chest wall (RCW) or know someone who is, you may be interested in this clinical trial, the DIGNITY Study. Researchers are conducting the trial to determine the effectiveness of a novel investigational drug used in combination with heat therapy for the treatment of recurrent chest wall cancer (RCW).
To participate in this trial, patients will:
- Have a documented recurrence of breast cancer on the chest wall (or its overlying skin)
- And have had: a mastectomy, radiation, and chemotherapy
CLICK HERE TO FIND OUT IF YOU ARE ELIBIBLE TO PARTICIPATE: http://www.surveymonkey.com/s.aspx?sm=ZwRugqNJUfmD4lBtU0bsYQ_3d_3d
SIGN UP HERE TO RECEIVE EMAIL UPDATES ABOUT THIS TRIAL:
http://survey.constantcontact.com/survey/a07e2jzbhkofxyrqwh8/start
Email updates will include:
· A description of the investigational therapy and study requirements,
· Eligibility criteria,
· US trial site locations,
· An opportunity to:
- request brochures,
- talk to someone directly about your situation,
- share information with friends, family, your support network and your physician,
- ask questions about this trial.
Questions about this message? Please contact:
Jeannette Tighe at MedAdvisory
Phone: 508-297-2439
Email: jtighe@medadvisory.net
Kind regards,
Jeannette Tighe
Principal, MedAdvisory LLC
www.medadvisory.net
jtighe@medadvisory.net
508-297-2439

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__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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10-02-2009, 04:12 AM
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#15
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Guest
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Re: Had my Herceptin/Zometa infusion
My daughter had a problem with the Zometa giving her pain and the next time they gave her a steriod prior to the Zometa and it worked wonderful! So ask about it and hopefully it'll help you too!
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