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Old 03-28-2004, 10:22 AM   #1
Merridith
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Hi:

I'm starting taxol for the first time in a couple of days... any suggestions to make this easier? What pain medication worked best for you or you need any meds at all? How was your energy level?
Thanks all, Merridith
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Old 03-29-2004, 09:38 AM   #2
JaneP
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Drink - drink - drink! I didn't like the taste of water so I quit drinking! Bad idea. The taste improves, BTW.

Sip room temperature ginger ale for stomach queasies.

Get your wig ready! I lost every hair excep about 6 on one leg that I kept for souveniers!

Good luck! This too shall pass!
Jane
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Old 03-29-2004, 10:32 PM   #3
eleanor
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Hi
The only thing I remember about the Taxol was the pain. At first it wasn't too bad, but eventually I had to take vicodine. Once treatment stopped, I was fine after a few weeks.
el
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Old 03-30-2004, 04:56 AM   #4
Beth
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I am on Taxol now. 13 weekly treatments so far. I don't have any pain, but I am very tired all the time and could sleep 20 hours a day, plus I lost my hair.
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Old 03-31-2004, 04:22 AM   #5
Merridith
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Yikes! This taxol sounds worse than A/C! And here I thought that I would have an easier time of it!
But thanks all for your replies. My first treatment is tomorrow morning.
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Old 03-28-2011, 06:08 PM   #6
Becky
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Re: Starting Taxol - questions

I did not find taxol as bad as AC. It is different and I had some neuropathy but in general, no strong chemo side effects like mouth sores, nausea or bad blood counts like AC. Because you get more steroids with the taxanes, you are at first energized so you cannot sleep for 24-36 hours. Then you crash. However, the recovery between rounds is better and your counts never plummet as much. The neuropathy (fingers and toes - tingling) can be worse for some than others. There are holistic things you can take. Ask your onc nurse who will guide you. You will do fine!
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 03-28-2011, 06:23 PM   #7
KDR
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Re: Starting Taxol - questions

Hi,
I've been on Taxol since July 2010. I cut my hair for a good wig fit, but my hair only thinned out and grew back while on treatment. You may or may not lose your hair. Not everyone does on Taxol.
I use Dilaudid as necessary, which is not often.
I really had to get used to the tingling sensation on my scalp at first, but side effects have been minimal.
Best of luck,
Karen
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World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
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 03-28-2011, 09:42 PM   #8
StephN
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Re: Starting Taxol - questions

The spammer is gone.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 03-29-2011, 04:13 PM   #9
tricia keegan
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Re: Starting Taxol - questions

I had the same reaction to taxol as Becky stated, depsite it's own side effects it was far more tolerable than a/c and I needed no anti nausea or neulasta shots!!!
Good luck
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Tricia
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.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 03-30-2011, 06:20 AM   #10
basset girl
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Re: Starting Taxol - questions

Merridith, Taxol was so much easier for me than AC. I had fatigue but did not have to have any Neulasta shots and I did not have hardly any nausea. I felt a big relief on Taxol after the AC!

Nancy
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Nancy

Diagnosed 4/06, age 45
IDC, 3.5 cm, 4/7 positive nodes
Stage IIB
Her2++, ER & PR++
Mastectomy, 4 AC, 4 Taxol & Herception for one year
Radiation
Ovaries out 4/07
Currently taking Arimidex and Zometa every 6 months
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Old 04-14-2011, 05:14 PM   #11
fluffqueen01
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Re: Starting Taxol - questions

Is anyone getting Taxol with herceptin and no other chemotherapy drugs? I am currently on Taxol x 12 weekly along with Herceptin which will continue. It doesn't appear to be the standard protocol, but two out of the three oncologists recommended that protocol and one of them is a nationally recognized breast cancer oncologist.
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Old 04-14-2011, 05:33 PM   #12
chicagoetc
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Re: Starting Taxol - questions

Fluff Queen,

It was standard for me...

Melanie
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Diagnosed: 7/13/07 (or 7/7/07)
Surgery: 8/15/07 Modified Radical One Side with Lymph Node Dissection
Pathology Report: ER/PR-, HER2+ with FISH at 8.4 copies, Grade 3, Stage IIIa, 3.2 cm tumor plus 4/19 positive lymph nodes
Portacath: 9/7/07
Chemo: 9/14/07 with AC (every three weeks) for four rounds
Physical Therapy for ROM Loss / "Cording" (but not Lymphodema)
Taxol + Herceptin weekly (started 12/2007 with 8 of 12 Taxol)
Radiation: (28 rads from 3/07 to 4/07)
Reconstruction (silicone implant)
Herceptin done (10/08)
Cognitive Remediation (11/08 - 12/08)
Lymphedema Diagnosed 5/10/10 (almost 3 years post cancer diagnosis)
Lymphedema Rehab 9/10/10 - 11/10/10
Six years NED...7/7/2013!
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Old 04-14-2011, 06:44 PM   #13
BonnieR
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Re: Starting Taxol - questions

Merridth, I never had AC but from what I have read and heard, Taxol is much easier on a person. Granted there may be leg pain and other side effects associated with Taxol but there are meds to releive symptoms. And not everyone gets them all...For instance, I did have neuropathy. But not some of the other possible S/Es...We all react differently. So please don't begin by being fearful and expecting the worse. It will probably never happen. Keep the faith.
ETA: Fluff Queen: It was suggested to me to leave out the Carboplatin but the onc I ended up with prescribed all three so I went along with it. But it is not unheard of to only do the 2.
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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

Last edited by BonnieR; 04-14-2011 at 06:48 PM.. Reason: Fluff queen
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Old 04-17-2011, 12:05 AM   #14
sarah
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Re: Starting Taxol - questions

Hello,
Fatigue was the big issue for me. I was on weekly Taxol and Herceptin for 6 months (my onc thought the Taxol would be easier to take if taken every week as opposed to every 3 weeks a stronger dose), then Herceptin for 6 years (originally I was told for life). Ask the pharmacy or nurses about a gentle mouthwash to avoid mouth sores. I had no nausea. I rested a lot, read a lot, ate pasta and gained 15 pounds which I am still dragging around with me. Lost my hair, had terrible skin problems, itching, open sores, toe nails nearly came off, brittle nails, they gave me cortisone cream to put on for 2 weeks (can't do longer) and avoid the sun but really only calamine lotion calmed the itching. Looking back I wonder if a low dose of benadryl would have worked? but when I had my breast operation and they gave me morphine which made me itch and didn't help the pain, they gave me benadryl and I thought they'd killed me!
Chemos a drag but it's killing the little buggers!
hugs
sarah
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