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Old 09-11-2009, 04:39 PM   #1
sally
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Adriamycin

Hi, I haven't been on for a while. I have been sick all summer trying to handle Gemzar/Tykerb. It stopped working for me and now I have more progression in the liver spine and chest lymphnodes. I just started Adriamycin (spelling?) I'm 3 weeks on and one week off. I would love to hear any input on side effects, hair loss, anything you have to offer. I've had 2 doses so far. I more dose and I will complete my first cycle. I'm not sure how many cycles I will get before my next scan. I have been lurking and keeping up on everyone. I just haven't logged on or posted in a while. I have been depressed over our latest angels this past year or so. I'm trying to get a little more positive and came here for some encouragement. Hope to hear from you soon. Take care. Sally
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Dx March 2004 HER2+ er/pr+ 8/16 + lymphnodes mets to the liver Stage IV / 6 cycles of TCH and 33 rads . NED Continued Herceptin 3 years w/ Femara. Tumor markers start to rise in Jan of 2007 and swiched to Tamoxifen. August of 2007 found more mets to liver and lymphnodes outside of liver. Went on Tykerb/Xeleoda--spots on liver gone found large mass between intestines. March 2008 started TCH. Stopped Carboplatin due to allergy. Still on Taxotere and Herceptin. Nov 2008 mass is gone. 3 new spot on liver and one on spine. Radiation on spine. tykerb/gemzar for liver mets. PET in April 09 showed shrinkage still a little activity, continue tykerb/gemzar until Aug 09. PET showed new spot on my spine more on my liver and a bunch of enlarged lymphnodes in upper chest. Start Adriamycin Sep 09. more radiation on spine . April 2010- Still on Adriamycin 3wks on 1 wk off and zometa every 28 days. PET -May 2010 showed progression. Starting Herceptin/Navelbine on June '10
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Old 09-11-2009, 05:16 PM   #2
Jackie07
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Re: Adriamycin

Sally,

Thanks for the update. I started taking a low dose (20 mg) antidepressant (citalopram) August 30 and it seems to have helped. I think I am so used to be outdoors (getting plenty of sunlight and exercise) and these many years of staying indoors probably had depleted my Vitamin B12.

Adriamycin is a pretty strong medicine. I did not have it because I had already had pretty low MUGA score to begin with because of my congenital heart valve condition. The doctor replaced it with epirubicin and it worked fine. I only ended up having to quit after 22 weeks of TCH when I had the recurrence 4 years later (the first operation was not 'clean' and all the doctors, scans had missed the sign.)

My advice would be: "stay active and do regular exercise to keep your heart strong..."
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Old 09-11-2009, 07:55 PM   #3
sassy
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Re: Adriamycin

Hello Sally,

I started losing my hair about two weeks after my first Adri/Cytoxin. Low white counts were a side effect that was treated with Neulasta shots following each treatment. I had a lot of muscle and bone aches; probably bone aches were from Neulasta.

Hope you do well on this treatment.
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dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14YEARS NED!
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Old 09-11-2009, 08:16 PM   #4
Laurel
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Re: Adriamycin

Sally,

Adriamycin is no fun, that's for certain. I lost my hair, but not my lashes or brows from it. The taxol took those! Hair is a minor thing if the old "red devil", adriamycin, gets you back to NED! You sound like a real fighter. I wish you luck and great results from the regime!
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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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Old 09-12-2009, 03:36 AM   #5
Ellie F
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Re: Adriamycin

Hi
I also lost all my hair on Adriamycin but not my eyebrows or eyelashes, they just thinned a bit. i was also very tearful and down for about a week in between treatments. I noticed some bone and joint pain also. sickness was managed by Zofran but I got quite bad indigestion but this was relieved by a simple antacid tablet.
Hope this helps
ellie
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Old 09-12-2009, 07:10 AM   #6
nitewind
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Re: Adriamycin

Hi Sally,
I started off with Adriamycin and Cytoxin mixture. 4 treatments. Had a bad time at first until they slowed down the infusion, seems they were giving it to fast. Once they slowed it, it was a little easier to take. I had a lot of pain at the time, but I think it was from the Neulasta shot that I had to have after my A/C treatment. I lost my hair about two weeks after my first treatment.
My best thoughts are with you, you'll come thru it just fine, I'm sure.
Hugs
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Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!
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Old 09-12-2009, 07:52 AM   #7
ammebarb
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Re: Adriamycin

Hello Sally. I am the sister of a wonderful gal who was diagnosed in March. She just finished four rounds of AC. She was told that she'd certainly lose her hair, so she shaved it, but there is still a lot of "bristle". Her brows and lashes are thin. She had a rough week out of every three, and then started to perk up again. Not fun, but doable. She's now doing Taxol and Herceptin on a weekly basis. I hope that you have minimal side effects, while the "red devil" blasts those miserable bad cells all to @%**!

Barb A.
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Old 09-12-2009, 10:38 AM   #8
Patb
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Re: Adriamycin

I took adriamycin/cytoxin for four months. I did
lose my hair on the 17th day. I felt fine most of
the time until my counts went down and then they
gave me the neulasta shot which was bad for me.
Bone ache and pain. It lasted two days. It did help
my counts but fatigue was an issue toward the end
but all in all not bad
Best of luck to you that this will be the chemo for
you. It is a strong one.
patb
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Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
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Old 09-12-2009, 03:55 PM   #9
tricia keegan
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Re: Adriamycin

Sally, I found this the toughest of all myb tx's but still do able!
I did lose my hair on the 17th day too, but it's known to have good results as it's quite aggressive and I hope it does for you too
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Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
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Old 09-12-2009, 05:08 PM   #10
Cal-Gal
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Re: Adriamycin

Hello Sally,
I had 6 treatments of Adriamyician, Cytoxan and Taxotere-finished last June-after 2 weeks off--started Herceptin(weekly for one year)

I was told that this is the real strong stuff that kills the bad guys--I pretty much had SE's already noted by our sisters--the only other lasting effect has been some vein issues in my upper arm--they are sore and upper arm get's swollen--the onco nurses say it is the Adria---but should get better over time---

Good Luck to you--my thoughts and prayers are with you---
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DX: 11/08 Age: 53
Surgery: 1/09
Bilat Mastectomy, no reconstruction
ILC-4 tumors-1.7 cm,1.5 cm (2).8 cm
DCIS-11 cm
All tumors Grade 3
All tumors ER-0%/PR-0%
All tumors HER2+
IHC-all tumors Overexpression/borderline
FISH 2 tumors Her2-Negative
FISH 2 tumors Her2+ Equivocal
Stage I, 0/1 nodes
LVI-Indeterminate(treated as positive)
SPR Score 8/9
Ki-67 20%
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Chemo: 6 rounds TAC Feb-June 2009 w/Neulasta
Herceptin: 6/12/09-6/4/10 52weeks
HNPCC genetic test: negative
Port Placement-9/23/09 Port Removal 6/25/10
Echo's every 3 months-All normal
2/09 Staging PET/CT showed 0.2 micronodule upper R lobe-lung-Onc does not think this is mets--
6/5/09 AND 10/09 CT scan 0.2 micronodule unchanged
1/10-PET/CT-uptake in nasopharynx-
1/10-MRI All normal
6/10-Bone Scan-clear
12/10-PET/CT-All Clear-NED
12/11-PET-All Clear-NED

12/12-PET-All Clear-NED
12/13-CT w/contrast Head, Torso-All Clear
12/14-CT w/contrast Head-All Clear
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Old 09-12-2009, 05:18 PM   #11
sally
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Re: Adriamycin

I would like to thank eveyone for such quick replies to my concerns. I really haven't noticed many side effects yet but it's only been about 12 days since my first dose. I think my doses are small. 20mg ? pushed in my IV by hand over about 10-15 minutes. I also get Aloxi and 10mg of decadron. I did get a Zometa this time also. I am still recovering from the Gemzar. I think that drug really hurt me in many ways. I should have complained about my symptoms sooner but I figured if my blood was up to it then I should suck it up and do it. I should have listened to my body and spoke up. Live and learn. Thanks again and would love to hear more personal experiences with this drug. Take care and stay strong, Sally
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Dx March 2004 HER2+ er/pr+ 8/16 + lymphnodes mets to the liver Stage IV / 6 cycles of TCH and 33 rads . NED Continued Herceptin 3 years w/ Femara. Tumor markers start to rise in Jan of 2007 and swiched to Tamoxifen. August of 2007 found more mets to liver and lymphnodes outside of liver. Went on Tykerb/Xeleoda--spots on liver gone found large mass between intestines. March 2008 started TCH. Stopped Carboplatin due to allergy. Still on Taxotere and Herceptin. Nov 2008 mass is gone. 3 new spot on liver and one on spine. Radiation on spine. tykerb/gemzar for liver mets. PET in April 09 showed shrinkage still a little activity, continue tykerb/gemzar until Aug 09. PET showed new spot on my spine more on my liver and a bunch of enlarged lymphnodes in upper chest. Start Adriamycin Sep 09. more radiation on spine . April 2010- Still on Adriamycin 3wks on 1 wk off and zometa every 28 days. PET -May 2010 showed progression. Starting Herceptin/Navelbine on June '10
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Old 09-12-2009, 05:31 PM   #12
Ruth
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Re: Adriamycin

Sally,
I hope that Adriamycin wipes out your problem spots. It is really strong stuff. I felt ok after the first treatment but then it started to make me really light headed and had pretty bad issues with thrush and mouth sores. I would try to suck on ice during the infusions or popscicles. I think most people do lose their hair. Mine fell out pretty fast. I did feel weak with this drug but it only usually lasted a few days then I was able to move around pretty good.
Glad you came back here. Everyone here is wonderful and will help you in anyway they can.
Sending lots of hugs ~ Ruth
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Diagnosed 6/03 nursing daughter
Dose dense A/C 4x
Modified rad mast 8/03
IDC; 3 cm; 10+/16 nodes; ER/PR-; Her2+++
Weekly taxol w/Herceptin (off label) 12x's
40 weeks Herceptin
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Old 09-14-2009, 01:39 AM   #13
Joan M
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Re: Adriamycin

Sally,

Sorry to hear about your progression.

I had Adriamycin and Cytoxan, followed by Taxol and Herceptin, which was pretty standard in 2003.

Oncs are phasing out the use of Adriamycin lately. However, it has been used for many years and hopefully will be the silver bullet to control the mets.

Joan
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 09-14-2009, 04:18 AM   #14
whatz
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Re: Adriamycin

I was on Adriamycin/Cytoxan for four treatments (three weeks spaced). Lost my hair 16 days after first treatment. My main problem was constipation the first 3-4 days after treatment (took Senna to help with that) and a lot of fatigue (had treatments on Thursday and usually slept part of Saturday and most of Sunday). By Monday things would slowly start normalizing again (one day at a time). I found the treatments to be cumulative on me though i.e. it took just a tad longer to bounce back after each treatment than the previous one. All in all it was very do-able though not my most favorite thing :-). I had no problems with nausea at all. My doc had me on Zofran/Decatron/Emend regiment that worked extremely well for me. Best wishes to you! This too shall pass :-)
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4/09 suspicious lump in left breast
5/09 biopsi lead to diagnosis ER/PR -
Her2+.Grade 3,full masectomy left breast,sentinel nodes clear,Stage 1
6/09 Adriamycin + Cytoxan 4 treatments (every 3 weeks) followed by Taxol + Herceptin, 1 treatment weekly for 12 weeks, followed by Herceptin for 40 weeks
MRI Brain 4/10 clear
CT Body 4/10 clear
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Old 09-14-2009, 08:03 AM   #15
Colleens_Husband
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Re: Adriamycin

Sally:

AHDubose is 100 percent correct about adrianycin having a cumulative effect. Colleen really started to ratchet downwards after each treatment. Adriamycin seems to have the worst side effects of any of the chemo drugs but it is a serious cancer killing medicine. Get through these treatments any way you can and, God willing, the adriamycin will kill your cancer.

Sally, I know these are difficult times for you. You will be in our 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 09-14-2009, 09:01 AM   #16
Brenda_D
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Re: Adriamycin

I had 4 Adriamycin and Cytoxin. It was very hard on me, but I know it helped kick cancer behind.
I lost my hair starting at day 17, had mouth sores and thrush at about treatment 3, had bad stomach acid, food and water tasted terrible (although I did not lose a pound), I had massive fatigue, constipation, hemorrhoids, sleep problems, and more. For 3 months or more, I just crawled from the bed to the bathroom and back.
But as bad as it is going through it, it's like having a baby. Bad at time, but as time goes by, the memory fades.
It's worth doing to hit the BC as hard as possible.
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Old 09-14-2009, 06:04 PM   #17
suzan w
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Re: Adriamycin

Adriamycin...ugh!!! Lost hair, everywhere. It is strong stuff, but effective! What's a little hair when it kills cancer cells, eh??!! XO Suzan
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Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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