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08-16-2006, 06:49 AM
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#1
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Only 3 herceptin left
Hi everyone,
I only have 3 herceptin left. I had a muga test after being on herceptin 4 months and my ejection level was fine. I haven't had a muga since. I only have 3 more herceptin left. YIPPEE.
Anyone know anyone who had to stop herceptin at this point? I am feeling fine. Occasionally notice I take a deep breath but then I star to worry and think it's just in my head. I exercise (powerwalk) daily and have no trouble so is thinking if there were heart issues they would arise during exercise?
Just curious. I'm sure looking forward to the end of treatment completely. I am trusting God for complete healing.
Mary Jo (marejo)
Stage 2B
dx June 2005
er/pr neg her2neu pos. grade 3
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08-16-2006, 09:07 AM
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#2
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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YEA MArejo
I just had my last Herceptin last Thur 8/10/06 and just made an appointment to get my port out 9/1/06 and had my 2nd mammogram since dx this morning...told everything looks fine and to come back in a year...YEA!!!! My onc only did 1 echo just prior to starting Herceptin and have never had another one...He's aggressive. Take care and God bless.
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
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08-16-2006, 10:46 AM
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#3
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Well done Mary Jo and Rhonda
Congratulations Mary Jo and Rhonda!What a great feeling that must be.I think I'm due to finish herceptin around Novenber sometime but have had echo's every 3 months and mugga's before that,no problems so far thankfully.My onc won't even give me the herceptin if I miss an echo,I suppose he's just being over cautious.
Tricia
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08-16-2006, 11:50 AM
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#4
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Senior Member
Join Date: Aug 2006
Location: St. Louis Mo
Posts: 57
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3 More
Hi, I also have only three more Herceptin treatments left. I agree Yippeee! My onc did an echo before starting and every three months since just to be sure all is well with my heart.
I am still trying to decide what I want to do about my port. I might leave it in for awhile even though I am not sure I would ever go on chemo again.
__________________
Kool
DX 3/05
Stage IIB 1.3cm w/ lymph node involvement
ER+++PR+, HER2+++ G3
Surgery - Left mastectomy 4/05, Lymph node removal 5/05, breast expander removal 6/05, partial thyroidectomy 7/05, Right mastectomy 1/06
Post Menopausal due to hyserectomy 2/03 (took hormone replacement)
Treatment - A/C, Taxol and Herceptin, Herceptin only (finish 10/06), Arimidex daily.
Age 50
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08-16-2006, 08:17 PM
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#5
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Senior Member
Join Date: Dec 2005
Location: Montgomery Co, Pennsylvania
Posts: 110
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Hi, I would have finished my year of Herceptin in November, but had to stop a month ago. I've had Muga scans every three months and they have slowly been going down. After the last one, my doctor said no more! I believe they are the protocol for Herceptin..
Maggie
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08-17-2006, 04:29 AM
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#6
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Senior Member
Join Date: Nov 2005
Location: Hilton Head Island, SC
Posts: 279
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wow, no regular muga's? huh, I get them pretty regularly. Also why is no one thinking of going 2 years instead of one? Isn't there a study going on that looks to see if this is better?
I can imagine it IS nice to be done with Dr.'s and sticking etc!!!
CONGRATS!
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08-17-2006, 04:27 PM
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#7
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Member
Join Date: Apr 2006
Location: NJ
Posts: 18
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Yes, I just recently had to stop taking Herceptin after 8 months of treatment. My ejection fraction dropped to 47%. My oncologist ceased all further treatments. Her viewpoint is the risk of stroke and heart attack out weighs the benefit of further Herceptin treatments.
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08-17-2006, 05:39 PM
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#8
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Did you have any symptoms to let you know that your ejection level dropped off?
marejo
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08-17-2006, 06:45 PM
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#9
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Member
Join Date: Apr 2006
Location: NJ
Posts: 18
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No symptoms to report.
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08-17-2006, 09:01 PM
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#10
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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Hi Marejo, Around here they normally do the tests every 3 mos. Mine went from 65 to 56 during AC. I did feel very sluggish at the gym. I think 45 -50 is the cutoff. From past posts, it seems like people don't get symptoms until they are in the 40's.
While on Herceptin only, my score has gone up to 70, so the doc has made no mention of me going back for the last test prior to finishing Herceptin.
I think it would be reasonable to ask your doc or onc nurse what that 4 month score was. Did they do one before chemo? If your score was high or showed little decline, I would think you'd be OK for 3 more. Every time I go in they ask the shortness of breath, etc questions and that may be their way of evaluating your LVF.
Conrats to you and Rhonda.
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08-17-2006, 10:34 PM
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#11
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Marejo, All these oncologist seem to have their own way about scans, MUGA's, test, etc. I know I had a ECHO before I started chemo/herceptin, and then my 2nd one was three months after starting. My first one was 70%, and my 2nd one was 69%. And as of this last Tues I just had my 3rd ECHO...I have called and still don't know the results to that one? (Keeping my fingers crossed.)
But everyone at this place gets an ECHO every 3 months if on herceptin. I would think your oncologist would of at least had you do one more ECHO/MUGA by now just to make sure? But they know your medical history and maybe see no need? Regardless...I am sure glad your close to being done & feeling well enough for your power walks. You go girl.
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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08-18-2006, 03:55 AM
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#12
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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I did have an echo before chemo started and my score was 68. I didn't start herceptin until my A/C was over with. I started herceptin with my Taxol. After 4 months of being on herceptin (and taxol was finished by that point) I had a muga and I think my score was in the mid 60's again. So, unless I have symptoms my onc. said I don't need another one. Like I said - 3 more to go and I can't wait.
marejo
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08-18-2006, 12:51 PM
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#13
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Member
Join Date: Apr 2006
Location: NJ
Posts: 18
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Thanks for your response. I've had mugascan tests done before, during and after chemo and while on Hercepin alone. All the mugascan tests have dropped each time and this was the worst result. Very significant drop in ejection fraction and my oncologist, as well as a second opinion oncologist, recommended that I cease all future Herception treatments. It's just not worth the risk of a heart attack.
Many thanks for answering.
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08-18-2006, 01:35 PM
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#14
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Congratulations to Mary Jo and Rhonda! I can't wait until I hae no more Herceptin visits but have a long way to go. My thoughts and prayers are with you both.
__________________
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
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08-18-2006, 04:47 PM
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#15
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Senior Member
Join Date: Sep 2005
Location: Los Angeles
Posts: 430
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Congratulations to MaryJo and Rhonda. I'ts so good to hear wonderful news.
Keep us informed etc of your progress. those still on it want to know what it's like.
LOve to both
MCS ( maria)
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08-18-2006, 06:24 PM
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#16
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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I have just started my herceptin treatments yesterday with a full year to go. Congrats to all of you who are finished or about to finish. I have mixed feelings about when I finish in a year. On the one hand it will be nice but on the other it will be scary to be left with no defense in fighting off a metastisis or reoccurence. Plus, I am an early stager, stage 1, no node involvement so I don't even know if herceptin is going to do anything for me or not. My onc only does 1 year herceptin for everyone at this point. He said there is no research that proves anything over a year of herceptin is helpful and it can increase your chances of heart complications. Yet I have read on this forum that many of you have taken it for much longer than 1 year so I am very confused on this issue. Any feed back from anyone on this issue?
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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08-18-2006, 06:53 PM
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#17
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Good luck to you rinaina. I hope that your treatments go well and that you have no adverse reaction to herceptin. I was fortunate thus far and have had no complications with either chemo, radiation or herceptin. I feel incredibly protected and covered by our Lord and know that He was with me throughout it all.
As for the worries of when herceptin is finished. I totally understand that. After Oct. 11 by body will be on it's own, I guess you could say, and I pray that a recurrence is not in my future BUT I also know that my future is in God's Hand's and all the fretting in the world will not change what will be. So.........I try to live one day at a time and enjoy each day the Lord gives me. I thank Him that my cancer was allowed to be found while still in it's early stage and know that for some reason this was allowed to happen to me. A bible verse that meant so much to me throughout my year of surgery and treatment is from Romans 8:28 which says "for we know that in all things God works for the good of those who love Him and were called according to His purpose." I trust and believe God has a purpose for all things that happen to His children and that is what keeps me positive and happy.
God Bless each of you and may His love shine through you to each one you meet.
marejo
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08-18-2006, 07:03 PM
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#18
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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Marejo, it is very true that we are all in God's hands and that is a great verse to keep in mind. I too am so very thankful and feel very fortunate that my bc was caught early and that my nodes were negative. I know worrying is a wasted emotion that can do no one no good, what will be is out of my hands. All I can do is take things a day at a time and enjoy every single day to it's fullest. Thank you for your wisdom.
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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08-18-2006, 07:06 PM
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#19
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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I have a book I'd like to recommend that was such a great comfort and inspiration to me. It is called Grace For Each Hour by Mary J. Nelson. I highly recommend it to each of you.
marejo
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08-18-2006, 07:43 PM
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#20
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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thanks for the recommendation, will check it out.
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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