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Old 12-10-2008, 06:23 AM   #1
Brenda S
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Join Date: Apr 2008
Posts: 69
Question Herceptin reaction

I completed infusions of Carboplatin/taxotere/herceptin in October 2008, I took them every three weeks. I am now on herceptin every three weeks until May I will have 18 treatments total. I have developed significant hip pain that radiates down my legs-at times. My oncologist suggested Ibuprofen and tells me that this is not cancer related. I also suffer from split nails, memory loss and fatigue. Is this normal? I am afraid that all of this chemo, radiation and surgery has not worked and cancer is still in my body. The objective, rational side of me dismisses this, but the dark nights of sleeplessness when the cancer demons are out scare me. Any thoughts or wisdom?
__________________
Diagnosed 3/08 at age 57
1.1cm tumor, ER-PR-, Her2 3+(rt side)

Grade 2
Node negative
clean margins
Stage 1
lumpectomy 4/08
Mammocite Radiation 4/08
Will begin TCH Chemo 5/08
TCH 3 week cycle for 6 cycles
Herceptin alone for 18 more treatments on a 3 week cycle
Total chemo 12 months
Neulasta 24 hours after each cycle
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Old 12-10-2008, 07:16 AM   #2
Lori R
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Location: Evergreen, Colorado
Posts: 454
Brenda,

What you are experiencing is very common.

First of all Herceptin...I've been on herceptin for over a year now and my fingernails are still a little "odd". They split and still sort of lift. My solution has been to paint them with a thick polish and coat them with Sally Hansen - hard as nails. (it also makes me feel a little more "polished")

As for the fatigue, my Dr. keeps reminding me that it takes almost a year to have your body fully recover from the chemicals. So, the fatique from Chemo et all is normal. Remember......continue to take care of yourself. For many of us on this site, that is been the life lesson (and gift) of this experience.

Be patient....you will slowly get back to your old self.

As for the cancer creepies (boy...do we all have them), you are diagnosed early, followed aggressive treatment that many members on this site have been on and are doing FANTASTIC. (hey look...I am even NED....a stage IV with mets to the liver) So, the new drugs are working. Keep the faith.

Warm Hug...coming your way....Lori
__________________
2007
Oct - Diagnosed - Stage IV
5 c.m. IDC - Left Side er/pr- Her2+++
Node + 2/14 - Single Liver Met
Double Mastectomy
Nov - Begin T+H
2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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Old 12-10-2008, 07:36 AM   #3
Brenda S
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Posts: 69
Thanks

Lori,
Thanks for your support. I appreciate it very much!
Brenda
__________________
Diagnosed 3/08 at age 57
1.1cm tumor, ER-PR-, Her2 3+(rt side)

Grade 2
Node negative
clean margins
Stage 1
lumpectomy 4/08
Mammocite Radiation 4/08
Will begin TCH Chemo 5/08
TCH 3 week cycle for 6 cycles
Herceptin alone for 18 more treatments on a 3 week cycle
Total chemo 12 months
Neulasta 24 hours after each cycle
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Old 12-10-2008, 08:57 AM   #4
BonnieR
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Posts: 2,210
Brenda, as Lori said, these symptoms sound familiar to me too! I recall that the leg pain was worse during the TCH phase of treatment. It was pretty bad some days. But is gone now. I still have some neuropathy in my extremities. My memory is still terrible! Fatigue was also bad but my engery is greatly improved now that I am finished treatment. I can also identify with the fear during the night. That is the worst. But things always seem brighter with the dawn of a new day. So just keep your onc informed and keep the faith! It is a process and it takes time. Best wishes.
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Bonnie

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 12-10-2008, 02:06 PM   #5
Brenda S
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Join Date: Apr 2008
Posts: 69
Thanks

Thanks Bonnie
__________________
Diagnosed 3/08 at age 57
1.1cm tumor, ER-PR-, Her2 3+(rt side)

Grade 2
Node negative
clean margins
Stage 1
lumpectomy 4/08
Mammocite Radiation 4/08
Will begin TCH Chemo 5/08
TCH 3 week cycle for 6 cycles
Herceptin alone for 18 more treatments on a 3 week cycle
Total chemo 12 months
Neulasta 24 hours after each cycle
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Old 12-10-2008, 03:06 PM   #6
Bill
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Location: Connecticut
Posts: 2,077
Brenda, you hang in there, girl! Like Lori and the Bonnielass have said, those symtoms sound familiar. I wish I could help more, but please know that you are in my thoughts and prayers. As for sleeplessness, and worry, I know they wake up at midnite and prowl around 'til dawn. Check with your doc. Maybe you could try some melatonin or dietary changes or a mild sleep aid or anti-depressant to help you through the rough patches. I'm not a pill-pusher, but sometimes it's most important to get a good night's sleep. Dr. Bill's recommendation is a nice hot bath with several safe candles placed about while you listen to some soothing music of your choice, then slip into bed and know that while you drift off to sleep, your sisters and brothers and the Angels of the Lord are standing over you and keeping the cancer demons at bay. Sleep well, sister
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Old 12-10-2008, 03:46 PM   #7
CindyE
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Join Date: Apr 2008
Location: WA State
Posts: 199
Hi Brenda:
Your dx and treatment are very similar to mine. I have the split nails and cuticle splits too. I also suffer at times from memory loss issues like I can't remember the word I want to say. It's strange when it happens but now I have come to the realization that it's treatment related and try and not worry too much about it. I have read it gets better with time and am hopeful that everything can get back to some type of "normal" or at least a new acceptable type of normal. I have been having some swelling in my hand on the left side where I had the two nodes removed. I'm told it maybe lymphedema and it was aggravated by the radiation.

As for the cancer returning, I know I think about it quite a bit. I know that I shouldn't be I can't help it. I just had a mammo and ultrasound done on the left breast to see about some lumps in my tumor bed. They were just scar tissue and I was given an all-clear so I'm feeling much better this week. Remember we have cut it out, poisoned it, burned and fried this cancer out. Hang in there and keep the hope!
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Cindy

L/IDC, 1.2 cm, Stage 1, Her2+, ER+/PR+ at age 48
4/15/2008 Lumpectomy + sentinel node biopsy
Margins neg and Nodes neg (2 tested)
MUGA score 55 on 5/6/2008

Treatment starting 05/08/2008:
Chemo 4 cycles, 3 weeks apart with Taxotere & Cytoxan - Chemo - Done 7/24/2008!
Herceptin for 1 year
Radiation starting in 9/2008
MUGA score 61.9 on 9/04/2008
33 Rads with boost - Done 10/13/2008
MUGA score 58 on 12/01/2008
MUGA score 59 on 3/16/2009
Herceptin for 1 year - Done 4/27/2009
MUGA score 64 on 6/22/2009
All scans - NED 6/24/2009
MRI - NED 11/10/2009
All scans - Still NED 8/25/2011
Still NED 2024!



I am calling this my pink journey
Follow my journey into the pink at my blog here

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Old 12-10-2008, 06:55 PM   #8
MJo
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I had a lot of aches and pains with herceptin, and my nails broke constantly. I also broke bones in my foot twice during the nine months I took herceptin. Never broke a bone before, and haven't broken any since. Memory was definitely affected. Be careful, pamper yourself and know that it will get better. Be patient with yourself when treatment ends. It takes time to get back to "normal."
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MJO

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 12-10-2008, 07:05 PM   #9
DanaRT
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Location: Avilla, Indiana
Posts: 261
Brenda,
We share the same chemo meds. I will have my last (every 3 weeks) Herceptin treatment the day after Christmas. I still have a few side effects. It is painful to stand up and begin to walk after sitting for lengthy times like driving or sitting at the computer. It is much worse in the evenings. I walk for a few about 90 seconds thinking "ouch, ouch, ouch...." with every step.
I saw my onco last week. She said it is probably the chemo still working out of my system.

In the middle of the TCH regime my finger tips split wide open and bleed terribly! Extremely painful. I used gallons of liquid band-aid and wore Playtex Living Gloves to clean and wash dishes. Eight months out, I am still having a few splits in my finger tips.

My point is...I think it takes along time for the chemo brain, fatigue and aches to diminish.

I wake too with the cancer demons in the middle of the night. At times I can barely breath. I know the fear all too well.

Take care,
Dana
__________________
-Dana-

]
Diagnosed - Nov. 2, 2007 at 45
Lumpectomy - Nov. 13, 2007
Tumor 1.2 cm
Stage 1 Grade 3
ER/PR - Her2 +++ (3.8)
Taxotere/Carboplatin/Herceptin- 6 rounds
Neulasta
Radiation 33 treatments - will be done 6/6/08
Herceptin through 12/08
12/07 MUGA 61%, 4/08 MUGA 60%, 7/08 MUGA 64%
three wonderful daughters, a terrific husband,
Life is Good
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Old 12-11-2008, 12:27 AM   #10
Catherine
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Location: Oregon
Posts: 715
My last Herceptin was a year ago. And I feel so much stronger now. My nails are better, I can walk farther, I can walk up stairs without getting winded. Yes, it does get better. That said.....I still find it intriguing who gets what treatment plan. I did not have Herceptin until I was done with all the other drugs. Why do some people have Herceptin right along with Carboplatin and Taxotere? I have to admit that I did not have all that many pains while on Herceptin. Is that because I had Herceptin alone? A year after the end of Herceptin, my stamina is getting much better, even my memory is getting better. I do have one scary comment....a friend who did not have Herceptin, complained about a hip problem. This came one year after she was finished with Chemo and was on Tamoxifen......Okay, I know I should not say it....but her cancer was back. So I, too, can get the crazies in the middle of the night, even tho I am NED. Here's to all of us staying as well as possible.

Hugs, Catherine
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Catherine


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 12-11-2008, 06:27 AM   #11
Brenda S
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Join Date: Apr 2008
Posts: 69
Thumbs up Thanks

Thanks To All Who Posted These Words Of Encouragement And Information. It Really Helps To Know I Am Not Alone!
Brenda
__________________
Diagnosed 3/08 at age 57
1.1cm tumor, ER-PR-, Her2 3+(rt side)

Grade 2
Node negative
clean margins
Stage 1
lumpectomy 4/08
Mammocite Radiation 4/08
Will begin TCH Chemo 5/08
TCH 3 week cycle for 6 cycles
Herceptin alone for 18 more treatments on a 3 week cycle
Total chemo 12 months
Neulasta 24 hours after each cycle
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