HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Today's Posts

Reply
 
Thread Tools Display Modes
Old 03-30-2007, 06:35 PM   #1
Sandy H
Senior Member
 
Sandy H's Avatar
 
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
Well, not so good and not so bad!!!

I finally made it through the day after 7 hours!! I was surprised at what I heard and yet was prepared for the worse hoping for better! I will try to summarize it and not write a book. The bone scan report was not ready so my oncologist read the x-rays as he does much of the time. It was clean! Now, the cat scan was clean for the organs but showed a small right pleural effusion and a tiny left pleural effusion. He said it could be the cancer or just inflammation. I am sure it is the cancer where we know its in the chest wall. Nothing in the lungs which he said is good! The effusion bears watching. I asked about the swelling I have at the base of my neck in front and he said the report did not say anything so he said he was sure he knew what it was but would run around the corner and look at the x-rays in his office. Back he came and said he was right it is a soft tissue nodule from the skin mets. Now, looks like my pain is from the effusion-not severe but its there and from around my port as it is hard and fused to the chest wall. He just shook his head on that one. So we discussed several options and we decided to go with doxil every 4 weeks. He said I would not loose my hair and the info the nurses gave me said I would. I voiced that I did not like mixed messages and that I felt the doctors should tell the patients that all chemo causes hair loss and than those that don't it would be a wonderful surprise!! The nurses laughed and said I keep everyone on their toes. I also made a suggestion and will put it on the next survey that they do away with appointments and have walk in service. This would save them money not to pay the office help to fill out appointment cards etc. The last two time I have waited well over an hour to see the oncologist. They told me they were looking at that issue. I asked to start the chemo today and the doctor looked surprised and said, "well, if you are ready its not that busy (yet, I waited over an hour to see him of course he was the busy one)in the chemo room" and so we did the first one today. I know there are a few on Doxil, Karen who posted today doing well. Awesome, so good to hear some good news this week as seems I have heard so much bad every where I was getting parnoid. I would like feedback from those as to how they are doing with the side effects. I was told the hands and feet will be the worse. At least, I know why I am having the pain in couple of different areas. One from the effusion-not severe but uncomfortable with shortness of breath when I run upstairs. The worse one is from the port being fused to the chest wall. Hopefully, some of this will resolve with the Doxil. Need prayers it will work. Thank you all for your prayers and support, the personal e-mail messages from several and the comforting phone call from Christine. She can read a post and sense when we are desperate-truly an angel sent from God. Thank you Christine for being there for us. I will call you tomorrow. hugs, Sandy
__________________
Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!




I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
Sandy H is offline   Reply With Quote
Old 03-30-2007, 07:12 PM   #2
Soccermom
Senior Member
 
Soccermom's Avatar
 
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
Dear Sandy,
Thank you for posting after such a trying day! I have been thinking about you and hoping that you'd recieve better news than you seemed to expect.
I am unfamiliar with Doxil...BUT i think that I read something to the effect that if you can keep your hands and feet cold with icepacks during infusions it may lessen/prevent the hand and foot soreness. I am sure someone will gently correct me if I am mistaken.
I will keep you in my thoughts and hope this new "journey" will not diminish your lovely spirit in any way!
Sincerely,
Marcia
Soccermom is offline   Reply With Quote
Old 03-30-2007, 07:18 PM   #3
Barbara H.
Senior Member
 
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
Hi Sandy,
I only know you from this support group, but you have been in my thoughts all day. I am sure you are not happy about starting a new chemo, but are relieved that the news is not as bad as you feared. Nevertheless, when I have been in such a situation, I am first somewhat releaved, and then feel somewhat down later, when I have to deal with the changes in my treatment. I can imagine that you are probably exhausted from your day and full of mixed emotions right now.
I do hope that the doxil works for you (with little hair loss) and puts you into remission.
Best wishes,
Barbara H.
Barbara H. is offline   Reply With Quote
Old 03-30-2007, 07:30 PM   #4
Barbara H.
Senior Member
 
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
hair loss

Hi Sandy,
I'm sure you have already searched for information, but I found a a site on the web that stated that hair loss was a less common effect from doxil. (10 to 29%) I hope your are part of the 71%.
Best wishes,
Barbara H.
Barbara H. is offline   Reply With Quote
Old 03-30-2007, 07:53 PM   #5
tousled1
Senior Member
 
tousled1's Avatar
 
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
Sandy,

Sorry to hear your news but hopefully the Doxil will do the trick. You always have such a positive attitude and I try to take lessons from you. I will keep you in my prayers.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
tousled1 is offline   Reply With Quote
Old 03-30-2007, 08:00 PM   #6
Christine
Founder - HER2 Support Group
 
Christine's Avatar
 
Join Date: Feb 2005
Location: Carlsbad, CA
Posts: 361
Images: 4
Wonderful News !!

I am really looking forward to talking to you tomorrow. How does 11:00 or 12:00 EST sound?

It looks like you are running the office now.

Hugs
Christine
__________________
1990, July DX 1.1cm er-, pr-
Lumpectomy, 5U4, radiation
1999, June mets to chest and brain
HER2 3+++, er- pr-
AC, Taxol, Herceptin, Gamma Knife (3 treatments) WBR
NED July 2001
December 2001 - Founded HER2 Support Group
Christine is offline   Reply With Quote
Old 03-30-2007, 08:21 PM   #7
lexigirl
Senior Member
 
lexigirl's Avatar
 
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
Sandy,

I am happy to read that you are staying positive. I hope thae Doxil will knock that pesky nodule out!! I hope you are back to feeling tip top really soon!!

Hugs and Prayers,
Lexi
lexigirl is offline   Reply With Quote
Old 03-30-2007, 09:38 PM   #8
caya
Senior Member
 
caya's Avatar
 
Join Date: Jan 2007
Location: Thornhill, Ontario Canada
Posts: 2,320
Sandy,

I only know you through this website, but I was thinking about you all day. So glad you posted, you are a brave woman. Hope that the Doxil will work for you and puts you into remission -
All the best for good results, with as few side effects as possible.

Caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
caya is offline   Reply With Quote
Old 03-30-2007, 09:51 PM   #9
mslinda
Senior Member
 
Join Date: Sep 2005
Location: Lumberton, Mississippi
Posts: 118
Sandy, thanks for posting about your day. You have been in my prayers, and will continue to be. You have such spirit. You are an inspiration to me.

Thanks and love you.
Linda
S. Mississippi
__________________
Diagnosed 12/23/04
Biopsy 12/28/04
Lumpectomy 1/04/05
IDC, ER-PR-, HER2Neu+++
7mm tumor, Stage 1, Grade 3
6 CAF's
38 Rads
Finished 10/05

"Worry looks around. Sorry looks back. Faith looks up."
mslinda is offline   Reply With Quote
Old 03-31-2007, 12:33 AM   #10
Chelee
Senior Member
 
Chelee's Avatar
 
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
Sandy, I am so glad its not as bad as you were expecting. But on the other hand I wish you didn't have to deal with this at all. I like the way you waste no time and dive right in there and started your chemo today. Your one amazing lady. (I was thinking about you all day Friday.)

Sending you warm healing thoughts, and will keep you in my prayers. One extra BIG cyber hug coming your way. Hang in there Sandy.

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.
Chelee is offline   Reply With Quote
Old 03-31-2007, 02:27 AM   #11
RhondaH
Senior Member
 
RhondaH's Avatar
 
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
Sandy...

I'm sorry to here your news, but as always prayers will continue for the Doxil to succeed. Now, curl up w/ Yoda and take an nice rest. BIGGGG Huggs.

Rhonda
__________________
Rhonda

Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)

2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)


" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
RhondaH is offline   Reply With Quote
Old 03-31-2007, 05:41 AM   #12
cafe1084
Senior Member
 
Join Date: Nov 2006
Location: West Virginia
Posts: 105
Seven hours well spent to keep you happy and healthy and wearing your new "shoe collection". I myself am also a wacky colored shoe connoisseur Ha Ha.
I always enjoy your posts. You seem like suck a patient person, buy one who doesn't take crap from people and I admire that tremendously. I'll be crossing my fingers for minimal hair loss and sending prayers your way.

Stephanie C
cafe1084 is offline   Reply With Quote
Old 03-31-2007, 07:49 AM   #13
kareneg
Senior Member
 
Join Date: Nov 2005
Location: Lincoln, Rhode Island
Posts: 371
Wink

Sandy,

You are in my prayers and I pray the Doxil will help you as it is helping me. I have little to no side effects which is great. I had the hand foot syndrome left over from Xeloda so now I take B-6 everyday and my hands and feet are looking alot better. I have the Doxil every three weeks 70 mgs along with Herceptin. I was there 6 hours yesterday how I hate how long it takes, once in a great while I get out of there within 3 hours and I love those day I feel for you being there for 7 hours. Heres to Doxil and may it kick butt for you!
__________________
Love and Hope
Karen

IDC
DX 1998 STAGE I ER+/ PR+
AC CHEMO TILL FEB 1999
Tamxofin till 2001
2001 exstensive liver mets and mets to lungs
Started weekly taxol
Jan 2002 found out I was strongly HER2POS+++ started herceptin continued with taxol and herceptin till June 2002 then from June 2002 till Jan 2005 just herceptin and Arimidex
2005 Navelbine herceptin had RFA Then back on taxol with herceptin
April 2006 progression again went on clinical trial with tykrerb/herceptin progressed on the started Xeloda/ herceptin
Feb 2007 started Doxil
August 2007 Taxotere,Carboplatin and Herceptin exstensive mets to liver and pancreas
October 2007 Had to stop Carboplatin due to sever allergic reaction
Jan 2008
Stopped Taxotere due to progression now on Gemzar and Herceptin
March 2008 Starting Carboplatin, Abraxane, and Herceptin.
kareneg is offline   Reply With Quote
Old 03-31-2007, 08:32 AM   #14
Andi
Senior Member
 
Join Date: Mar 2006
Location: IOWA
Posts: 243
Sandy - I, too, was thinking about you, Friday, as I had my oncologist visit,also. I had the pleural effusions in December, but my course of treatment was different. I know nothing about doxil, but hope it helps take care of the effusions. I had surgery, but plenty of fluid remaining in my lungs afterwards, when I started on my chemo it began to help immediately. (As my surgeon said, when you treat the source, you should get relief.) My report yesterday was very good and since I have been on chemo, my shortness of breath has gone away. Best of luck to you, and keep that up-beat, positive attitude of yours!
__________________
Andi
-- ------------------------
Stage IIIC, 17 of 20 Nodes +, E+, Her2+++
Diagnosed 6/30/05
Lumpectomy 7/13/05
Dose Dense A/C x 4
Weekly Taxol + Herceptin x 12
Remainder of year Herceptin Every 3 weeks (completes 9/13/06)
Radiation completed 2/28/06
Currently on Tamoxifen
Dec 06 - Pleural effusion treated with pleurodesis
Now er/pr-, her2++
1/07 started weekly Navelbine plus Herceptin
Discontinued Tamoxifen
4/27/07 CTshowed progression
5/01/07 Began Tykerb/Xeloda + Zometa
5/22/07 Stopped treatment due to great progression
Andi is offline   Reply With Quote
Old 03-31-2007, 01:37 PM   #15
Sheila
Senior Member
 
Sheila's Avatar
 
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
Sandy

I was so sorry to hear of all the problems, you were our Tykerb angel...or at least to me...I am hoping the Doxil will get rid of the bad stuff...you are a proven fighter, get out the green shoes and start kickin...you are in our thoughts and prayers.
__________________
"Be kinder than necessary, for everyone you meet
is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
Sheila is offline   Reply With Quote
Old 03-31-2007, 03:10 PM   #16
Jean
Senior Member
 
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
Dear Sandy,

I am so sorry to read your news. You always have a wonderful manner of
keeping things in a great perspective. I so admire you -

I will keep you in my prayers and of course I will think positive thoughts
of the new treatment with doxil.

Best of Luck,
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
Jean is offline   Reply With Quote
Old 03-31-2007, 06:23 PM   #17
chrisy
Senior Member
 
chrisy's Avatar
 
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Sandy, thanks for the quick update. Wow - 7 hours, that's like a full time job. I agree with Christine - I can just hear you taking them all to task and setting them straight! Sounds like you have a really great team there (when you keep them in line). Sorry your news wasn't all good, but I'm glad you were able to jump right on it with the Doxil. Hopefully this will work well and quickly for you.

Please keep us posted, and know that you are held in my thoughts daily.

Much love
Chris
__________________
Chris in Scotts Valley
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
chrisy is offline   Reply With Quote
Old 03-31-2007, 07:15 PM   #18
Esther
Senior Member
 
Esther's Avatar
 
Join Date: Sep 2005
Location: Riverside, CA
Posts: 484
Sandy, sorry the news wasn't all great, but it seems you have a plan of action in place.

I've never used Doxil, so can't offer any input there, but hopefully the side effects will be mild for you.
Esther is offline   Reply With Quote
Old 03-31-2007, 08:22 PM   #19
Sandy H
Senior Member
 
Sandy H's Avatar
 
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
Thanks for all your wonderful support here. It really lifted my spirits. I have not worn my green shoes to oncology but I will next time. I have all kinds wild socks for every occassion and so that gets everyone's interest. The nurses and even the doctor check my socks. I tell them that is the wild side of me! Wait till they see my green shoes!! They call me the clown now can you believe that? Oh well, some times we have to create our fun when others are sleeping and having a bad day. That changes when I arrive even the visitors get a laugh out of me. Guess, I have said enough. O yes, I am surprised you can take Doxil with Herceptin??? I thought that was toxic to the heart. Gosh, I would have asked my doctor if I had of know there was any chance to putting the together. He asked me what info I had gotten off this message board and I told him Doxil is at the forefront here. He said he likes that we have always been on the same wave length here. Wishing you all well and I will keep you all updated. Thanks for the effusion info that helps me as I have to research that being new for me. hugs, Sandy
__________________
Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!




I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
Sandy H is offline   Reply With Quote
Old 03-31-2007, 08:45 PM   #20
Karen Weixel
Senior Member
 
Join Date: Jan 2007
Posts: 138
Dear Sandy,

Love, hugs and healing prayers being sent your way.

Karen
Karen Weixel is offline   Reply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 11:27 AM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter