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Old 03-22-2010, 07:49 PM   #1
undecided8
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Terrible time with Taxotere??

I re-started chemo again last Wednesday. I'm now hurting in places I never dreamed possible. I'm doing herceptin/taxotere every 3 wks. I have bone mets to femur/hip/2 ribs/humerus. I'm also doing radiation that I started last Tuesday. The pain is barely able to be kept under control, yet my Dr. does not seem to be concerned at all? Could this be the Taxotere? I was NOT in this amount pain before I started the radiation/chemo last week. It's now been 5 days since my chemo and I can barely even sit up for an hour at a time. Any advice would be greatly appreciated!.
Thanks!
Suzanne
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Old 03-22-2010, 09:27 PM   #2
Jean
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Re: Terrible time with Taxotere??

We all react in different degrees. I had taxotere and would feel pain two days after treatment especially in my shins and legs. My whole body felt like I was hit with a bat. I would soak in a warm tub and then put heating pads on my legs. I also found that putting a pillow under my legs helped. This would last about three days and then start to let up. I also found taking alieve was helpful.

Drink fluids and keep flushing your body which is very helpful. Strange as it sounds, I found moving to be helpful. By third day I was feeling better. Call your dr.
if the pain continues.

Best wishes,
Jean
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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
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TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
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Old 03-22-2010, 09:36 PM   #3
vlcarr
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Re: Terrible time with Taxotere??

I completed TCH at the end of January. I did not bounce back as quickly as some others on the board. I felt pretty crappy expect after my 4th treatment. I didn't ache as bad as you seem to be but I had horrible stomach pains and felt like I had a bad, bad case of the flu. It was not unusual for me to spend a week in bed.

Don't feel like you are doing anything wrong. We all react differently as Jean said.

My doctor did prescribe pain medication for me and it did help. I would walk when I could.

Hope the pain gets better. Hang in there!
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Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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Old 03-22-2010, 10:13 PM   #4
BonnieR
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Re: Terrible time with Taxotere??

I had Taxol. I remember having leg pain so bad for a day or two that I would swear I could not possibly go through it again. But, of course, it eased up and I went back for another round. We stopped after 4 rounds because I was getting some neuropathy.
As others have said, moving is probably a good thing even if not very far. I had a neighbor that would come for dog walking every day. I dragged myself a few doors up the street. It as all I could do, but I think it helped. Poor dog, having to turn around!
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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 03-22-2010, 11:27 PM   #5
Rich66
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Re: Terrible time with Taxotere??

My mom wound up in the hospital for pain management about 4-5 days after first Taxol, pain all over. One onc said it couldn't be the Taxol, the other said this was not uncommon. Go figure. Went into another hospital 4 days later with neutropenic fever.
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Old 03-23-2010, 04:24 AM   #6
Ellie F
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Re: Terrible time with Taxotere??

Hi
I also had bad bone pain on taxotere especially back and ribs. I was convinced I had bone mets it was awful.I felt generally crappy, very tearful and depressed for the first week. I somehow think the combo of taxotere and herceptin attacks joints quite badly and even after I finished it took a while to settle.
Ellie
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Old 03-23-2010, 05:26 AM   #7
sarah
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Re: Terrible time with Taxotere??

Hello Suzanne,
Please ask your doctor immediately if you can go on once a week. My oncologist put me on Taxol/Herceptin once a week rather than every 3 weeks saying in his notes that I would tolerate it better. Although it was annoying to go every week, I believe I had less bad side effects except for being tired for the entire 6 months and putting on 15 lbs.
Hope this helps.
health and happiness
sarah
ps remember you will get through this and then things will be better and easier.
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Old 03-23-2010, 10:04 AM   #8
ymryan
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Re: Terrible time with Taxotere??

Hi Suzanne,

I have completed 3 cycles of TCH. Following treatment, days 2-6 are the worst for me. I don't have the same level of pain you describe. Instead, I feel much like I have the flu. I am sick to my stomach, my stomach hurts, no foods/drinks are appealing to me, and I have all over body aches and pains (the type where it is hard to get comfortable). My doctor has prescribed me medicine to help with the nausea. However, I cope with the pain by taking ibuprofen and a nap (when my body lets me know I need one). I also make sure I get in a small walk in the morning and in the afternoon (even if all I do is walk to bathroom down the hall instead of the one closest to the sofa). I agree with the others that for some crazy reason movement helps with pain management (at least the pain that I experience). The other thing that I've noticed is that my body does not react the same way with every treatment. I had many more body aches and pains following my 1st treatment than I did with my 2nd and 3rd treatments. Hopefully that gives you some hope. Best wishes for diminished pain.
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Nov 09 - Grade 3 IDC + Grade 3 DCIS, ER/PR-, HER2+++, KI-67 91%; BRAC 1 and 2 negative
Dec 09 - Mastectomy LB, 2.4 cm, 1/27 nodes, Stage IIB
Jan 10 - Taxotere/Carboplatin/Herceptin (TCH) for 18 weeks (1X every 3 weeks); Herceptin every week for 18 weeks then every 3 weeks 'til week 51
Apr 10 - Blood transfusion to increase red blood cells
Apr 10 - Change regimen to Taxotere/Cisplatin/Herceptin
May 10 - Chemo done!
Jul 10 - Brain MRI normal
Dec 10 - PET scan NED
Dec 30 10 - Last Herceptin
Feb 11 - Port removed
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Old 03-23-2010, 04:49 PM   #9
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Re: Terrible time with Taxotere??

Suzanne,
My wife is on Taxotere & Herceptin every three weeks, the first treatment she experienced headaches and as she describes "spastic shooting pains that come out of nowhere" all over.

Her 2od treatment was ok, just flue like symptoms and chills.

Third treatment was the worst, bad shooting pains all over, bad headache, chills she was miserable, made 3 trips to the hospital to manage side effects.

It last a few days and then things go back to "normal" a week or so before the next round of treatment.

We think its the Taxotere, but everyone handles treatment a little different.

Hope next time is easer for you
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Wifes Dx:
Found tumor 11-09
Biopsy 11-09 positive: IDC Stage 4 grade 3 Her2 +, 3 nodes of 16 positive.
Surgery 12-09
CT scan: liver mets
MRI of Head: clean
Bone scan: clean
1st treatment: 1-28-10
Taxotere & Herceptin every 21 days
6 rounds of Taxotere
Herceptin every 21 days (on going)
Liver mets...GONE!
CT scans,bone scans & MRI's NED
NED to date
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Old 03-23-2010, 08:07 PM   #10
Catherine
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Re: Terrible time with Taxotere??

Suzanne,

My chemo was almost 4 years ago. I had the most pain with Taxol (is it the same as Taxotere). It was not half as bad as what you are having. One night, I could barely stand up and I was scared. We called the doctor and she prescribed Decradon (sp) as I recall. I know it was a steroid. Anyway, I know it really helped. I was towards the end of treatment so I only had to take it a few times, but I still remember feeling helped by the drug.

All the best, no fun to hurt, I hope the doctor can get you some relief.

Catherine
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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

Last edited by Catherine; 03-23-2010 at 08:08 PM.. Reason: spelling and word usage
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Old 03-26-2010, 07:55 AM   #11
Diane H
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Re: Terrible time with Taxotere??

My experience with that regime was tiresomely painful until I finally found a nurse who would listen and got the dr to prescribe pain meds. Oh my gosh, what a difference when the pain was under control. My advice would be to get pain relief as soon as possible and then at least for me the rest of treatment was so much more tolerable.
Gentle hugs,
Diane
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Old 03-26-2010, 08:17 AM   #12
jml
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Re: Terrible time with Taxotere??

OMG! Radiation WHILE you're doing q3week chemo? Yowze- that's a lot to have to endure! It's like adding insult to injury!
Would you consider dropping down to the qweekly regimen? The scheduling might be a bit of a pain, but you might be able to find the weekly taxotere SE's more manageable?
I'm on qweekly Ixempra, which has been rough - I have the option of the q3week cycle and I'd certainly prefer to go once/3 wks, but I'm really afraid I won't be able to tolerate the SE's of a triple dose.
Is a pain patch is an option? I just hope you find some relief & rest soooon!
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Old 03-26-2010, 11:18 AM   #13
Westcoastgirl
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Re: Terrible time with Taxotere??

On Taxol I got terrible pains and could hardly walk. I also got what I called spaghetti legs. I seemed to have no control over them and was very, very careful going up and down stairs. They would simply give way. I also had the shooting pains. I would say it felt like for example, my toes were shooting out sparks. I would be careful with the hot baths as neuropathy can be a real issue. I think it is not a good idea to put our hands and feet into hot solutions when on this drug as it brings the blood circulation into the extremities where the neuropathy is the worst. I think pain control sounds like something you should talk about as the pain should be manageable. Take care, Carolyn
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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 03-26-2010, 12:26 PM   #14
CoolBreeze
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Re: Terrible time with Taxotere??

I started out with taxotere but due to neuropathy early on, my onc switched me to weekly taxol. I had my 2nd to last infusion Wednesday.

And, I have the bone pain too and also the spaghetti legs described above. Hot baths help with the pain. I have vicodin too, prescribed for headaches that I take but it doesn't seem to help much. I wouldn't say it's disabling pain but it is very achy like a bad, bad flu. Maybe motrin or aleve would work better for this kind of pain.

By the way, I take l-glutamine for neuropathy. I believe it helps and it doesn't interfere with your regular treatment. Check with your onc, but I take 2 ts of powder 4 x a day for 3 days after chemo. There have been legitimate studies on medline showing it may help. They are early and small but since it won't hurt you, I figure I'd offer it up.

I'm not a supplement person normally.
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08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 03-26-2010, 01:42 PM   #15
Rich66
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Re: Terrible time with Taxotere??

Oh man..
I love technical talk like "spaghetti legs". Makes me think of Olive Oyl in the Popeye toon.
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Old 03-26-2010, 03:06 PM   #16
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Re: Terrible time with Taxotere??

Thanks SO much everyone for all your support and advice on this taxotere issue. Dr. will NOT let me change my regimen to q week versus q3 wks. I think I've dealt with about every s/e that a chemo drug can offer. The pain is MUCH better now thank God! And the fatigue is finally lifting. Yesterday the diarrhea sat in. GEEESH! White count is down but Dr. said it's not enough to worry just yet. He's making me see him weekly now. He's starting me on Zometa with the next infusion and said that sometimes Zometa can cause flu-like symptoms? That's just great! I've also developed in the last 2 days what they call "radiation recall". Go figure! I guess I had such an easy time with taxol/herceptin I didn't realize how easy I had it with that regimen, cause this one is definitely kicking my butt! Thanks again EVERYONE! Hope everyone is hanging in there and doing ok.

Suzanne E.
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