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Old 12-26-2010, 05:48 PM   #1
Elizabeth1227
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Depression from Herceptin

Hello Everyone,

My name is Elizabeth. I live in California. I was diagnosed with DCIS with no lymph node involvement in Dec 2007. The cancer returned in Feb 2010 with no lymph node involvement but there was a tiny tumor that was hertu-nu positive. I had a mascectomy Sept 2010. I started herceptin in October. The first infusion caused me to be very sensitive emotionally for two days. The second infusion 4 weeks later caused me to be over sensitive again for 2 days plus 2 more days of depression. The third infusion 3 weeks later caused almost 3 weeks of severe depression. Plus my hot flashes came back. This drug is definitely affecting my hormone imbalance. I am making a decision to go off it. I am unable to tolerate anti-depressants. They don't work for me or they cause side affects. My tumor was very small less than 1/16". I am confused as I know of no one else having this reaction. Does anyone have depression from herceptin?

Gratefully, Elizabeth1227
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Old 12-26-2010, 06:20 PM   #2
Westcoastgirl
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Re: Depression from Herceptin

Dear Elizabeth,
I would urge you very strongly to try and continue with Herceptin. If you look at the signatures on here where women had small tumors and did not have Herceptin they sometimes recurred and a recurrence is truly a change of life. All the current data points to early(small) stage cancers such as yours benefiting greatly from Herceptin. I am wondering if you should seek counseling for this so you can continue your treatments. I know there are some side effects with Herceptin but wonder if your depression is more a result of being on infusions rather than the actual infusion of Herceptin itself. Our minds can do very strange things indeed to us. I truly urge you to find help to conquer this reaction to Herceptin and stay the course. Wishing you all the best, Carolyn
__________________
12/17/08 biopsy after two 6 mos mammo recalls
12/30/08 diagnosed high grade IDC & DCIS
ER/PR +, Her2 (+++) post menopausal/age 57
1/15/09 double mastectomy/skin sparing; no evidence of vascular/lymphatic invasion, 8neg/8 nodes (tumor 8.0mm)
2/16/09 given portacath/removed 4/30/10
2/18/09 "surprise" 2.0mm tumor/positive borders~
completed 28 rads 10/09.
2/23/09 until 4/19/10~treatments every 3wks (4 Cytoxan + Adriamycin, 4 Taxol + Herceptin, 13 Herceptin alone)
8/09 osteoporosis diagnosis/Zometa 3 yrs of 1x/6 months
Chemo side effects; Deafness, kidney function loss
11/09 began Aromatase Inhibitor (Femara)/Feb2014, stopped Femara early/after 3 mos began Tamoxifen for 8 mos to complete 5 years
11/10 Reconstruction, directly to silicone implants
12/11 nipples by skin graft/Right breast size reduced

I have heard th
ere are troubles of more than one kind

Some come from ahead and some come from behind.
But I've bought a big bat. I'm all ready you see.
Now my troubles are going to have trouble with me!
Dr. Seuss
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Old 12-26-2010, 07:50 PM   #3
Elizabeth1227
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Re: Depression from Herceptin

Dear Carolyn,

Thank you for responding to my post. The herceptin is affecting my hormones which is causing the depression. I was hoping there was someone else who has had this side effect. I am feeling better and know it is the herceptin that causes the hormonal imbalance. I would rather be on the herceptin than not but don't know how to cope with the hormone imbalance. I am not estrogen or progesterone positive but I did not need hormone replacement therapy after I went off of the hormones when my breast cancer returned in Feb 2010. It wasn't until the herceptin that my hormones starting affecting me again with depression, over sensitivity, and hot flashes. It is has been almost 4 weeks since my last infusion and the last week I feel like myself again and the hot flashes have subsided. I would live with the hot flashes but don't know how to live with the depression. It has been frustrating to explain what a hormone imbalance can do when someone has not experienced it themselves. It is equivalent to severe post partum blues is the best way I can explain it.

I did not include that I had a secondary primary cancer which I finished treatment in May of this year. I was on very strong chemo Mytomicin and 5 FU and I did not have a side effect like this. I did lose my hair and the radiation caused 2nd burns to my body. I have been through a lot this year but my faith has been getting me through it. Thank You God.

Gratefully, Elizabeth
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Old 12-27-2010, 08:00 AM   #4
Mary L
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Red face Re: Depression from Herceptin

I agree that maybe you are depressed because of your cancer rather than from Herceptin. You had 2 different cancers in 1 year. That's alot to face. Talk to your Dr. about it and see what he recommends. Best wishes. Mary L
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Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
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Old 12-27-2010, 08:31 AM   #5
NanaJoni
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Re: Depression from Herceptin

Elizabeth - I also would encourage you to try to continue the Herceptin and, possibly try to do some counseling. You can see my year from my signature and I'm now doing Herceptin only every 3 weeks. I'm past any hormonal problems but last week I had a meltdown totally out of the blue- I just broke down in the car on the way home and when I got home collapsed in my husbands arms. All I could say to him was that "the demons had gotten out". After I calmed down, we talked through it and I realized that for 3 weeks of the month I can "pretend" everything is "normal" but I'd had my Herceptin last Tuesday and this happened on Thursday. I'd been breezing through the holidays with a happy face but then had to sit in the chemo room with all my wonderful friends and be a cancer patient again and it just overwhelmed me. I won't be seeing my counselor again til after the New Year but this is something we'll have to work on more. Please try to find a way to continue your treatments - the physical parts of fighting this disease can overpower the mental and spiritual but you are stronger than you think. I hope you and all of us will have many blessings in the New Year.
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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
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07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
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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 12-27-2010, 12:14 PM   #6
MJo
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Re: Depression from Herceptin

I have had clinical depression since age 15, and it runs in my family. I don't know if it is hormonal. For me, the fear and anxiety of having cancer, on top of my brain chemistry, put me close to a breakdown. I had a tiny tumor and I was so anxious and depressed that I wanted to cancel the initial chemo, way before I made it to Herceptin. I started taking Lexapro every day, with occasional Xanas. It was the first time I'd ever consented to treating my depression with medication. Fortunately, the drugs worked for me and helped me get through chemo and herceptin. I am so sorry that medication doesn't help you. I see you are in California, so I suppose you can't be going through Seasonal Affective Disorder (SAD). I too hope that you can stay on Herceptin longer. Maybe talk therapy could help you. Every treatment you get gives you a better chance of a cure.
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IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
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Old 12-27-2010, 02:30 PM   #7
Westcoastgirl
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Re: Depression from Herceptin

Hi Elizabeth,

I have found that there are a multitude of side effects to each and every drug we are prescribed and most often the list is very, very long. I have had a few strange side effects to the medications they have given me and sure enough way at the end of the list is my symptom and then again sometimes it's not there at all, (for example I had a rash after radiation and it was suggested here on this site that I had radiation recall. My onc. told me that was impossible as there were no documented cases of it when on Femara, only Tamoxifin. Well after many hours of searching I did indeed find a documented case of radiation recall on Femara.) I think that there are most likely other women that have had your hormonal side effect to Herceptin but the timing of your post or the luck of the draw has just simply kept those women from seeing your post or replying to it. Before you give up on Herceptin I would try your counselor as many suggest. You have been through quite a battle this past year and as I said the mind is one powerful entity....but also I would talk to your onc. about possibly substituting another drug that is known to afford a similar protection; for example Tykerb or perhaps some part of the T-DM trials or the vaccination trials, or.... Of course I do not know what I am talking about but it seems to me when I read the different trial reports there is more than one way to skin the Her2 cat. Best of luck! Carolyn
__________________
12/17/08 biopsy after two 6 mos mammo recalls
12/30/08 diagnosed high grade IDC & DCIS
ER/PR +, Her2 (+++) post menopausal/age 57
1/15/09 double mastectomy/skin sparing; no evidence of vascular/lymphatic invasion, 8neg/8 nodes (tumor 8.0mm)
2/16/09 given portacath/removed 4/30/10
2/18/09 "surprise" 2.0mm tumor/positive borders~
completed 28 rads 10/09.
2/23/09 until 4/19/10~treatments every 3wks (4 Cytoxan + Adriamycin, 4 Taxol + Herceptin, 13 Herceptin alone)
8/09 osteoporosis diagnosis/Zometa 3 yrs of 1x/6 months
Chemo side effects; Deafness, kidney function loss
11/09 began Aromatase Inhibitor (Femara)/Feb2014, stopped Femara early/after 3 mos began Tamoxifen for 8 mos to complete 5 years
11/10 Reconstruction, directly to silicone implants
12/11 nipples by skin graft/Right breast size reduced

I have heard th
ere are troubles of more than one kind

Some come from ahead and some come from behind.
But I've bought a big bat. I'm all ready you see.
Now my troubles are going to have trouble with me!
Dr. Seuss
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Old 12-27-2010, 03:42 PM   #8
Colleens_Husband
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Re: Depression from Herceptin

Elizabeth:

I have to agree with MaryL. You have had two cancers in one year. If that isn't a reason to be depressed, then I have no idea what would be.

There are some very inconclusive studies with some pretty wierd results about Herceptin and depression. About 25% of the general adult population has problems with depression. Women with breast cancer have about a 40% occurrence of depression. So it seems that depression with breast cancer is a pretty normal state.

The problem is that women taking Herceptin have an incidence rate of depression of about 6%, which is 34% lower than the incidence rate of women with breast cancer. Do these results mean that Herceptin actually lower the incidence of breast cancer? No, not necessarily. I think women women who take Herceptin are pretty happy to get a treatment for what used to be one of the more deadly types of breast cancer.

The clinical trials do not show a positive link between Herceptin and depression, but they do show a link between having cancer and depression. I suggest you follow the wise advice of others on this forum and continue the Herceptin, which can save your life, and get counseling, which is usually offered at no cost at most cancer centers.

Elizabeth, you will be in our thoughts and prayers.

Lee
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This happened to Colleen:

Diagnosed in September 2007
ER-/PR-/HER2 Neu+++ 2.1 cm x .9 cm spicluted tumor with three fingers, Stage 2B
Sentinal node biopsy and lymph node removal with 3/18 positive in October 2007
4 TAC infusions
lumpectomy March 2008, bad margins
Re-excision on June 3rd, 2008 with clean margins
Fitted for compression sleeve July 16, 2008
Started the first of two TCH infusions August 14, 2008
Done with chemo and now a member of the blue dot club 9/17/08
Starting radiation October 1, 2008
life is still on hold
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Old 12-27-2010, 05:39 PM   #9
bejuce
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Re: Depression from Herceptin

Hi Elizabeth,

I'm sorry uou are going through this. Have you considered
post traumatic stress disorder rather than depression? Maybe that's what you're experiencing. I know it's quite possible and real as I think I'm going through it myself. It gets triggered anytime I have reminders of my cancer experience, like last week when I had a meltdown at the cancer center at a follow-up visit with my radiation oncologist. Or when I smell the soap I used to use during chemo. Little things can put me
in a mind funk easily.

I'd try talk to a therapist about this but please continue with te Herceptin if
you can. It's a lifesaver for many of us on this site.

My best wishes to you,

Marcia
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ER+ (30%)/PR-/HER-2+, stage 3

Diagnosed on 02/18/09 at 38 with a huge 12x10 cm tumor, after a 6 month delay. Told I was too young and had no risk factors. Found swollen node during breastfeeding.
March-August 09: neo-adjuvant chemo, part of a trial at Stanford (4 DD A/C, 4 Taxotere with daily Tykerb), loading dose of Herceptin
08/12/09 - bye bye boobies (bilateral mastectomy)
08/24/09 - path report shows 100 % success in breast tissue (no cancer there, yay!), 98 % success in lymphatic invasion, and even though 11/13 nodes were still positive, > 95 % of the tumor in them was killed. Hoping for the best!
September-October 09: rads with daily Xeloda
02/25/10 - Cholecystectomy
05/27/10 - Bone scan clear
06/14/10 - CT scan clear, ovarian cyst found
07/27/10 - Done with Herceptin!
02/15/11 - MVA-BN HER-2 vaccine trial
03/15/11 - First CA 15-3: 12.7 and normal, yay!
10/01/11 - Bone scan and CT scan clear, fatty liver found
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Old 12-27-2010, 10:52 PM   #10
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Re: Depression from Herceptin

Elizabeth,

I've found that exercising is the best 'cure' for depression. Exercise increases the release of the happy hormone - endorphin - besides other benefit. My husband was prescribed to "walk 30 minutes each day - rain or shine" by his cardiologist. He'd had mild depression off and on since his early 20's and had been given anti-depressant whenever he's experiencing 'anxiety'. Ever since he started the walking regiment, he's experienced much less depression.
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Old 12-28-2010, 01:16 PM   #11
Elizabeth1227
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Re: Depression from Herceptin

Hi Everyone,

Thank you everyone for your responses. I appreciate your help. I know that the herceptin is causing my hormones to be imbalanced as my hot flashes came back along with the depression and over sensitivity. I was on hormone therapy that took care of the above, I was taken off the hormones when my breast cancer came back and did ok without them. It wasn't until I started the herceptin that the symptoms returned.
I will just keep working with my doctors to come up with a solution. They will not put me back on the hormones while I am having cancer treatment.
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Old 12-28-2010, 01:21 PM   #12
Elizabeth1227
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Re: Depression from Herceptin

Hi again,

I accidently posted before I finished. Sorry.

I am just going to do my best each day and do what I can today to take care of myself and keep trusting god for the rest.

Thank you all for your help.

Elizabeth
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Old 12-28-2010, 02:40 PM   #13
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Re: Depression from Herceptin

Hi,
I have had no depression from Herceptin. I think it's hard to pin depression on one thing, rather a combimation is more likely.
Hope things straighten out soon...do you have a library you love? Could you have a foot massage? Is there a sanctuary you like to visit?
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Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 12-28-2010, 02:44 PM   #14
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Re: Depression from Herceptin - Going to do my best each day

That's really all any of us can do -- our best each day.
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IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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Old 12-29-2010, 07:00 AM   #15
MJo
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P.s>

Just about everyone gets hot flashes from BC treatment and from Herceptin. I don't know anyone who didn't get hot flashes while taking Herceptin. So while you have other issues going on re: hormones, your hot flashes are "normal" with Herceptin.
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IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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Old 12-29-2010, 10:30 AM   #16
Mary L
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Re: Depression from Herceptin

I am still getting hot flashes and red face and I have been off herceptin for over 3 years. I just hate it because it wakes me up at night. I just deal with it. Mary L
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Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
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