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Old 02-07-2014, 02:44 PM   #1
Adriana Mangus
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Location: California
Posts: 668
HELP please!! First time on taxotere

Hi everyone,

Had first taxotere treatment January 29th.

Any advice -- a more natural approach, please- - for this awful pain I appreciate it very much.

I have been miserable ever since the day after the treatment. Hands feel numb, skin rash on forehead, mandibular area and both sides of the neck, below the ear.

What do I do?

Additional info:

Normal blood pressure
No fever, vomiting, constipation
Apettite is normal, however I now have discovered sores in my mouth, so no oranges/pineapple in the morning!! The best of fruits.

Doctor wanted to prescribe Oxycontin- - I refused it.
Am I an idiot for doing so?

Please help ......

Love,

Adriana
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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Old 02-07-2014, 03:13 PM   #2
SoCalGal
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Re: HELP please!! First time on taxotere

Hi Adriana,
I'm so sorry that you are going thru this. I was on taxatere a long time ago. Mostly it made my stomach always feel sour, gave me chronic nausea and kind of like heartburn. I'm pretty sure that's when I started prevacid. I also used to stay on low doses (1/4 tab) of ativan which helped with the chronic nausea for a few days after "therapy". Maybe you will have to switch from toothpaste to baking soda and just pamper, pamper, pamper yourself. xoxo SoCalGal :-)
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 02-07-2014, 06:01 PM   #3
jaykay
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Re: HELP please!! First time on taxotere

Get some biotene mouthwash and gel. There is also biotene toothpaste. It really helps with the dry mouth/sores. Also ask your doc for a prescription for magic mouthwash. There are prescription lozenges available but the magic mouthwash did the trick for me. My doc also lowered my doseage due to the immediacy of mouth sores.

A dermatologist should be able to prescribe a steroid cream for the rash. I had it on my hands and face.

So sorry you have to go thru this, cancer sucks. Hang in there

Janis
__________________
March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 02-07-2014, 08:26 PM   #4
Saygoon
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Re: HELP please!! First time on taxotere

My heart goes out to you,sorry you are having so many problems. I was on Taxotere and did not have near the problems you are having. My Onc gave me steroids as well as nausea meds so that probably helped. I would definately talk to you Onc and see what they can do Anyway - just wanted to say I'm sending positve thoughts your way. Stay strong
__________________
Paula T. (saygoon means dog, yes I am Native)
DX March 2012
Stage IV w/ 5 bone mets to spine 2 on ribs
Herceptin, Zometa, Taxotere and Anasterole and of course radiation
2/14/2014 2 mets on pelvic bone
Stop Anasterole continue on Herceptin and Zometa start radiation (again)
2/24/2014 start T-DM1 continue Herceptin and Zometa
4/28 more radiation that brings total to 5 (10 days ea) - I think I will soon glow in the dark....
6/01/2014 Great news! Rib mets gone, 4 of 5 spine mets showing new bone growth and pelvic mets shrinking.
8/28/2014 T11 on spine is being stubborn started Perjeta, Herceptin, Zometa and Taxol - goodbye hair!
9/04/2014 Tomo therapy - pain finally gone
1/3/2015 - starting New Year out as still stable. Feeling positive
2/23/2015 - problems with left leg, bone met flaring up - MORE radiation Whew!
2/24/2015 Stress fracture in right side of pelvic - (great just great) back to wheelchair then walker then.....
2/26/2015 Off Taxol!! Still on Perjeta, Herceptin and Hormone Blocker starting to feel a little more human.
4/10/2015 Cancer has spread to spinal fluid - not sure where I go from here
6/29/2015 Omaya Port placed,begin IT Herceptin on 7/7/2015
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Old 02-08-2014, 04:52 AM   #5
Ellie F
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Re: HELP please!! First time on taxotere

Hi
Sorry to hear you're having a bad time. It's one of the most difficult cancer drugs. There are lots of good mouth washes available that really work. As for the rash myself and Chelee had horrendous rashes on our face and I also had it on my arm. I tried steroid cream which didn't work but then got an antihistamine and it totally cleared it! What I found out very quickly though was to stay out of the sun totally as it made the rash much much worse! I also felt very tearful and upset and now wished I had got some meds for it rather than suffering!
Hugs from England
Ellie
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Old 02-08-2014, 02:30 PM   #6
JennyB
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Re: HELP please!! First time on taxotere

Adriana,
I too had terrible mouth sores so used the biotene paste and mouthwash and also a conditioning gel just before bed. I also religiously gargled with bicarb wash 4 times a day and once on this routine didn't have any more mouth sores.
I also got terrbily depressed for 24 hours about 3 days post treatment - hubby used to wait for me to start crying!! Again must have been something to do with the taxotere as I wasn't as emotional on the FEC?
Good luck
Jenny x
__________________
Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy

Praying the Herceptin is as good as its hype!!
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Old 02-08-2014, 03:00 PM   #7
waterdreamer
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Re: HELP please!! First time on taxotere

When I first started chemo, I did 6 cycles of Taxotere. I had read about studies done by Valter Longo at USC that were doing trials on fasting prior to and after chemo. So I fasted the day before and the day after chemo, and drank plenty of fluid. I think it helped reduce the symptoms dramatically. For the stomach issues, I would open up a capsule of licorice root on my tongue and dissolve it in my mouth. I also drank a tea called "Sore Throat" which really helped at the time. It was in 2009, but if I remember correctly my doctor did prescribe anti-nausea meds, steroids (which I took as needed, except for the steroids which I took as directed) and Nexium (which I never took). Eat plenty of green healthy veggies, kale, brocolli and brussel sprouts, try to stay away from sugars and processed foods.
It is not fun and I can remember feeling so bad, but it really knocked the cancer out of my lungs and most of my bones. It worked really well for me. Just stay hydrated, because it does dry your body and salivary glands. The advice about Biotene toothpaste and mouthwash is good. Good luck and hang in there.
__________________
Breastfeeding when diagnosed with Her2+ May 2008
Oct 2008 Double mastectomy 22/28 lymph nodes positive
Decline chemotherapy (decision I regret)
Nov 2009 Mets to lungs and bones.
Dec 2009 Start Taxotere and Herceptin, T1, T3 heal completely and lungs are clear, T2 and first rib have lytic lesions. First rib becomes sclerotic. Considered stable.
May 2011, Onc calls progression and I cross over from comparison arm of clinical trial to TDM-1
Brain scan in Sept 2011 showed small tumor in right cerebellum, did Novalis radiation.


Feb 2013 < 1cm tumor in left frontal lobe. Did Novalis in March and latest scan shows no sign of brain metastasis.
Aug 2013 did 36th round of TDM-1 Due to TDM-1 side effects, shortness of breath, and difficulty getting my balance when getting out of bed, agreed with my oncologist to stop TDM-1.
Took a six week break, bone scan showed small uptake on left first rib. CT showed hypodensities in liver (too small to biopsy) and small nodule in lungs (mediastinal).
Started Navelbine weekly. Did one round with Herceptin.
Skipped next 2 rounds, due to neutropenia. Next chemo 7th Nov - have had 3 Neupogen shots, so WBC should look better... Did not tolerate Navelbine well.
December 2013 scans show no sign of active cancer.
March 2014 - currently only on Herceptin - brain MRI clear, PET/CT two nodules in right lung show uptake
May 2014 - stop Herceptin.
Sept 22, 2014 Brain MRI clear :) PET/CT Progression in lungs.
Sept 2014, Xeloda, Tykerb and Herceptin.
Nov 2014 - Decide to take a break from all treatment.
May 2015 - Brain met radiated with Novalis
July 2015 - Have progression in right lung.
Sept 2015 - Perjeta and Herceptin alone after a 9 month break from all treatment.
Nov 2015 - Thoracentesis 1500ml removed from right lung.
Dec 2015 - Two tiny 1mm brain mets radiated in right cerebellum.
Feb 2016 - Thoracentesis 2200ml drained from right lung
Feb 2016 - Stopped Perjeta and Herceptin and started back on Kadcyla as I had no previous progression on it. After 1 cycle of Kadcyla markers begin to drop. On second cycle add Keytruda.
March 2016 - Thoracentesis 1650ml drained from right lung.
April 2016 – Thoracentesis 1500 ml drained from right lung.
June 2016 – CT scan shows progression in right lung, as well as moderate pleural effusion requiring Thoracentesis.
June 2016 – Decide to stop Keytruda, and will do chemosensitivity test through Rational Therapeutics. Plan to continue on Kadcyla for next two cycles.
July 2016 - Start weekly Abraxane with Herceptin. WBRT with hippocampal sparing, Taking Namenda. 15 sessions over 3 weeks.
Aug - Dec 2016 - 2 infusions of Navelbine, very hard on my body and still dealing with anasarca (generalized edema) 1 infusion of Havalen
My doctor wants to put me on hospice.
Dec 23rd 2016 - I am granted compassionate use of Neratanib.
May 31st 2017 - still on Neratinib, feeling good.
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Old 02-08-2014, 05:45 PM   #8
tricia keegan
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Re: HELP please!! First time on taxotere

Adriana, I had Taxol which is similar and was glad to take anything the Dr's could give me to help alliviate any side effects, glad to take advantage of modern medicine and wondered why you are not?? I think it makes sense to add any help we can to get through all this!
__________________
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 02-08-2014, 05:59 PM   #9
Laurel
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Re: HELP please!! First time on taxotere

Adriana,

The pain you feel is real and absolutely awful. Like Tricia I had Taxol, and like you I shunned the oxycodone because ,really, it did little but knock me out for 2 hours only to awaken to the same level of pain. Seemed a waste of money to me, however, my Onc. told me that it is best to begin taking your pain med of choice BEFORE the pain begins which usually hits around 24-36 hours after the initiation of the infusion. She told me this after my 3rd infusion so I did put it into practice for my 4th and last infusion. I took Aleve the day after my infusion and followed the recommended dosing. It worked well surprisingly, so perhaps you may want to give that a try with Aleve or the Oxy. I wish you peace, health, and freedom from pain AND cancer!!!! Adding you to my prayer journal so I remember to lift you up.
__________________

Smile On!
Laurel


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 02-08-2014, 06:06 PM   #10
StephN
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Re: HELP please!! First time on taxotere

So sorry you have to endure these awful side effects.

My med onc prescribed Neurontin (aka gabapentin) for me and that did help. Like Laurel I also turned to Aleve and that was helpful. The pain was bad starting the third day after treatment and subsided after two or three really bad days.

The mouth sores were more persistent and I just had to watch what I ate, meaning my food was on the bland side.
__________________
"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 02-08-2014, 07:07 PM   #11
Becky
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Re: HELP please!! First time on taxotere

Oh, my heart goes out to you. With mouth sores, get yourself a child's toothbrush as you can get them in extra soft so it doesn't hurt the gums. Unfortunately (or fortunately) they usually come in cartoon characters. I had a Sponge Bob and Mulan. But when you brush and are close to the gums, it doesn't hurt.

Also, yogurt helps alot. Get plain nonfat regular yogurt and put it in your mouth and rinse around. It helped me.

Hugs to you.
__________________
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 02-08-2014, 08:33 PM   #12
sassy
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Re: HELP please!! First time on taxotere

Addy,

So very sorry you are having to deal with this.

I had Taxol rather than Taxotere and had a rough time with it. My onc put me on low dose of Darvoset. It didn't seem to make me loopy or nauseous like most pain meds tend to make me.

I didn't want to take pain meds either and my continued refusal was the only time my onc actually got upset with me. I'm glad I followed his advice. Many times I was in tears from the Taxol until the Darvoset made life bearable.

Stay well hydrated, during and after treatment especially. Magic mouthwash is truly magic!

Hoping you soon find relief.
__________________
Rhonda (Sassy)
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 02-08-2014, 10:05 PM   #13
Lovemyboys3
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Re: HELP please!! First time on taxotere

Hi Adriana,

First off love your name, its my sisters name. ;-)

I just had my last scheduled chemo treatment about 2 weeks ago and what helped me was plenty of water. I drank water while sitting in the chemo seat and continued to drink as much as I could the week after each treatment. As I really dislike water, it wasn't easy but it I do believe it helped.
I also washed my mouth with baking soda, water and salt a few times a day and I never did get any sores. Its not the best tasting thing in the world but it beat the alternative. My onc told me to rinse every 2 hours or at least after every meal. I did the after every meal until I felt them coming on and then I would increase the amount of times I rinsed and that always did the trick.

Good luck with all future treatments!!
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6/27/2013 - Diagnostic Mammogram due to a tiny lesion found.
6/27/13 - Diagnosed with Breast Cancer at age 33 :'(
07/11/2013 - Surgical needle biopsy
07/15/2013 - Path report results from biopsy - DCIS with micro invasion, Pagents disease - ER/PR- Her2+++
7/26/13 - PET Scan CLEAR!!
8/19/13 - B/L Mastectomy w/DIEP Flap reconstructive surgery. Nodes removed clear!! Stage 1A. Positive Margins remaining
8/23/13 - Finally HOME from the hospital
9/10/13 - All drains out. YEAH!!
9/6/13 - 2nd Surgery to try and remove remaining positive margins. Port placed.
9/11/13 - Path report shows all tissue samples are neg. Clear Margins!!
10/3/13 First TCH treatment - Horrible amount of side effects.

11/10/11 - First weekly Herceptin treatment.
10/11/13 - Late night ER visit due to Neutropenic fever - WBC at 0 in the hospital.

11/17/13 - Ultrasound on left breast due to pain. Benign findings: Oil cysts and possible Fat Neurosis from reconstructive surgery.
11/24/13 - Round 2 TCH treatment.
11/25/13 - Neulasta Shot given. Side effects minimal. Woo Hoo!
11/27/13 - Said goodbye to my hair. :-(
01/14 - Mammogram and Ultra sound - CLEAR!
01/23/14 - Last scheduled Chemo! WOO HOO!
03/04/14 - Phase 2&3 reconstructive surgery DONE!
03/06/14 - 2 days after surgery and 1st Herceptin only treatment. Minimal side affects.
03/14 - Began having pain and weakness in my feet and legs. Doc thinks it is delayed side affects of chemo possibly Neuropathy. Could even be the Herceptin (what ever it is I would appreciate it if it went away :/)
03/14 - A little over 8 wks post chemo and hair is about 1/2in long. :) Not a whole lot but its getting there. Eyebrows are taking there time but are coming in nicely.
04/14 - Where did my eyelashes go? :/


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Old 02-09-2014, 12:10 AM   #14
Aussie Girl
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Re: HELP please!! First time on taxotere

Dear Adriana,

You mentioned numb hands too - are you using cold mitts. cold packs or ice baths during the taxotere infusion? This is essential and if you can cool both hands and feet even better. A multivitamin and extra Vit B6 might help. You probably know all this, given your history.

There have been many threads about the cold mitts, so a search of this site should dredge up lots of info.

Is the pain from the mouth ulcers? It wasn't quite clear. If the pain is in the rash - get to the doctor quick. Your description doesn't sound like shingles (herpes zoster) but that would need special medication ASAP.

For mouth ulcers, you can get ointment called "orobase" which is a thick gel which covers up the ulcers and therefore reduces pain. I use kenalog in orobase for the usual non-chemo mouth ulcers (apthous ulcers) and it is magic. It is a steroid mixed with the orobase. Two or three applications and the ulcers heal, instead of the usual seven to ten days. I don't know if it works for chemo mouth ulcers, but you can ask.

Other things that cause a sore mouth are thrush, a fungal infection (Candida), and cold sores (herpes simplex virus) can break out on the lips, nose, mouth in immuno-supressed patients. These are less likely than the straight chemo toxicity ulcers.

Regarding pain, most of mine was in my muscles or gut related. I had oxycodone on hand but only used it rarely. It was helpful to know it was there for the bad times. Otherwise, I lived on panadol osteo, and it was nowhere near enough pain relief. I was told not to use Nurofen, which would have been more effective. I really couldn't use it since my platelets went very low. If your doctor allows Nurofen, try it.

Darvocet (acetaminophen and propoxyphene) or panadeine forte (acetaminophen and codeine) are stronger than panadol but less strong than oxycontin. Tramadol is another stronger one.

So there are some different choices for pain, none natural. Distraction, hot baths, and good sleep help reduce the perception of pain. Certain sorts of pain respond to acupuncture or physical therapy. I know I'm getting off track so I'll stop right now.

Best Wishes. Hang in there.

Aussie Girl
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17 June '13: Screen detected impalpable mass, Mammogram neg, US.
25 June '13: Diagnosed after multiple biopsies and MRIs
28 June '13: Left lumpectomey
4 July '13: Left Mastectomy
12 August '13: Commenced TCH chemo
Mid December '13 : TCH finished. Herceptin continuing three weekly.
4 August 2014- Herceptin infusions finished.
END OF THERAPY - YAY!
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Old 02-09-2014, 07:14 AM   #15
beachgirl501
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Re: HELP please!! First time on taxotere

Hi Adriana,
I'm sorry you are having such a bad time. I have had two rounds of Taxotere and 10 minutes before the infusion starts I put my fingers in a baggie full of ice. The ice has melted a little by the time I receive Taxotere. I keep my fingers in the baggie while I receive Taxotere. The nurse warned me not to let my fingers turn blue so when they get really cold I take them out for a few minutes to warm up. I also sucked on ice cubes or tried to for the one hour of Taxotere infusion. My fingers feel normal but my tongue gets sore and I lose my sense of taste so I don't think the ice helped that much but I will keep doing it. I have magic mouthwash which is wonderful. I also rinse with salt water. The only toothpaste I can use is children's fruit flavor. Try the ice bath since it costs nothing and it is worth a try. I use cold booties on my feet which we purchased. They are not as cold as the baggie of ice but I like them because there is no mess. You can do this!!!!
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Old 02-12-2014, 02:46 PM   #16
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Re: HELP please!! First time on taxotere

Hi Adee, dear friend, I had a tough time on taxotere...had it way back in 03 and yes, I had the mouth sores and my eyes watered often. Watch the fingers..I remember I cut my fingertip emptying silverware out of the dishwasher and did not feel it. So be careful. Be sure to mention any and all of those side-effects to your medical team. Love, Cathy
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Old 02-12-2014, 03:16 PM   #17
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Re: HELP please!! First time on taxotere

From Pam P's thread 'mouth sores': "I read about ideas on previous posts. I've bought Tom's of Maine toothpaste - that is painful too. I've also got the biotene rinse and have a script for magic mouth wash. The magic wash (maalox, lydocaine, benedryl) helps a little but the maalox stuff is not pleasant. I'm also trying baking soda & warm water. Also taking ibuprofin. The onc. nurse said they could prescribe vicodin for pain, but that seems like over kill at this point. I've also read a post on mycelex trouche and may ask for a script for that."

I was given the prescription of the magic wash (maalox, lydocaine, benedryl) when I developed mouth sores. It had worked very well for me.
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Old 02-12-2014, 05:14 PM   #18
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Re: HELP please!! First time on taxotere

Hello my friend,

I used Biotine toothpaste and wash and after my first cycle, my mouth sort of toughened up and it went away throughout the rest of my treatment. I would take a pain killer if it were affecting me to the point I couldn't get the recommended amount of sleep. It's also really stressful on the body to be in pain. I took Tramadol which isn't as strong but took the edge off.

By my last chemo I was miserable, miserable and finally got a Rx for pot which helped a lot.

Send me a PM if you need some help on a weekend with anything. I'd be glad to get some shopping done or whatever you need.

Love,
-Julie
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Live in Orange County, CA

Diagnosed with DCIS Oct. 2012

Bilateral Dec. 19, 2012
IDC, ER/PR-, Her2+++, Grade 3
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15.6 cm
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First thing each morning, I try on my bathing suit. Then, nothing worse can happen the rest of the day.
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Old 02-14-2014, 11:03 PM   #19
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Re: HELP please!! First time on taxotere

Taxotere was rough on me 8 yrs ago. My memory is a bit fuzzy. When my legs were in total pain I think they prescribed a steroid. I wore whit cotton gloves because my finger tips hurt . I remember a prescription for Abillify, but I hated that drug. I hope you can find the right prescription for relief for you. Your discomfort is real and no fun at all, so sorry for the discomfort.
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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
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Bilateral mastectomy Sep 06
33 rads after the surgery
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Old 02-15-2014, 12:09 AM   #20
Ais4Abbott
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Re: HELP please!! First time on taxotere

MD Anderson created Carafate for the mouthsores, reflux, etc. It helps. Ask your nurse for the magic mouthwash or Carafate. It will help. I remember the rash. I had forgotten it. Tell your nurse. Ask for help. They will help with that. However, I would be using Rick Simpson Oil if I lived in California. I live in Texas and can not use Cannabis products here. I am surprised they are still using that horrible chemo drug. I thought they quit using it with herceptin. More to come. Doing some research.
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2007 3x lumpectomy, radiation
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Mastectomy
Tram Flap - 1) wish I could delete that.
2)Interested if anyone did this, and then got implants. 3)Ruined stomach muscle. (Appreciate info about fixing this).
Recommend New Orleans instead of MD Anderson for all surgery.
12/17/2010 TCH 6x/3wks Herceptin 3/wks til 11/17/11.
12/23/2010 Lost Hair - 10/5/2011 Wig free - 4/14/2013 Long Hair again.
Severe nail detachment-(Past) 10/2011 - toenails still trying to grow back. 4/14/2013 - Normal toenails & fingernails.
Severe neuropathy (upper thighs/upper arms) - taser sensation - (in the past), light touch finger or toes = burning. Sock free (still). Can bend knees and ankles, now. Dr. stopped Docetaxel after 5th, due to possible permanent nerve damage. (now in hands/fingers, feet/toes - pain, interested in help). 4/14/2013 - Neuropathy much less. Nerve damage is permanent in fingers & toes, hands & feet. Toekini ($10) from CVS pharmacy works great for my CIPN - feet at night. Nothing can touch my toes without burning me. I can not braid hair - fingertips do not work right.
Severe constipation - (made worse by drinking small swallow of water with Senecot instead of a full glass of water - caused concrete type blockage of bowels - drink lots of water with it!)-(Past)
Severe Reflux - (great medicine available for this) - Carafate (past)
4/14/2013 Much happier now. Smiling a lot. Started working in the yard again, but must wear toeless sandals. Blessed. Best wishes & Blessings to you all. Has anyone had success with Rick Simpson Oil in curing HER2? Very interested in hearing details. I live in Texas and do not know anyone that has tried it. We can not use it here.
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