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Old 11-02-2008, 08:50 PM   #1
DianneS
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Question TCH- What to expect?

Good evening, ladies,

I will begin TCH November 6. Does that mean I will be getting Herceptin right off the bat? Then continue with just Herceptin for about 11 injections after the approx 5 months of TCH?

What side effects did you get from Taxotere/Carboplatin? Were they immediate? I will be getting 6 sessions every 3 weeks of TCH, then Herceptin alone for about 7 months or 11 times.

I am really, really afraid to start this stuff.

Will I be nauseated for 5-6 months every day? Do you have to take anti nausea meds every single day? Did any of you have enough energy to do activities, such as walking or grocery shopping? I have no idea how this will hit me and I know everyone is different, but there must be some generalities. I know fatigue will be one side effect. I am fairly tired from the bilateral mastectomy in Sept. 08 and an oophorectomy in Feb. 08. I had cerebral aneurysm surgery (uncomplicated, unruptured, thank God) in 2006. How much can a body take?

Any suggestions welcome,
Diannes
DX: Aug 08 with IDC, 2.1 cm tumor, grade 3, weakly ER positive, PR negative, HER2 positive+++
Bilateral mastectomies: Sept. 2008, NO lymph nodes involved, no vascular invasion
Stage I-IIA
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Old 11-03-2008, 12:56 AM   #2
Chelee
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Diannes, Believe me I was scared to death before my first infusion. I just imagined the worse, and like you wondered how much a body can take with all these drugs in it.

But after my first infusion I felt like I could breath again. It was such a major relief. It was non-eventful and everything went smoothly. Once you have the first one behind you the next time you will know what to expect and it will be so much easier...I promise you that.

As to nausea meds you do want to take them as prescribed. I was told to take mine the morning prior to my infusion and then again later that day, & then as needed. Your oncologist or chemo nurse will explain it to you. Do not wait to see if you will get sick...just take them. They also give you something for nausea in your IV and I doubt you will have any problems at all with that. The medications they have for nausea these days are great. After my 3rd or 4th infusion of TCH I was comfortable enough to go without any nausea meds and did just fine. So don't stress too much over all this. Easier said then done...I know!

When it comes to your herceptin you will get that last...after the taxotere, and carbo. (That's how it was given to me and all the other woman I've spoken to.) Plan on a very long day! They like to take things slowly the first time around to see how you will react to the medication. So bring books, MP3, DVD player or whatever will help you pass the time. Your chemo nurse will give you Benadryl in your IV so you will probably be sleepy and might doze off for a while...very common. Bring something to keep you warm because the chemo rooms tend to be on the cool side. You might want to bring some snacks too for when you get hungry. Drink lots of water and stay hydrated because this helps.

As to side affects...they usually are not immediate. They tend to hit you on day three. The 1st & 2nd day you will probably feel fine. That 3rd day to about six days after it was the worse for me. Then I always had a complete week when I felt pretty good just in time to go back for my next infusion. When it comes to how you will feel...you will have to play it by ear and see how things go for you. Your right...every "body" is different. I know of many woman that worked through their entire treatment...then there are those that weren't up to it. Again you have to wait and see. Take one day at a time...thats all you can do.

The major side affects from the carbo and taxotere for me were lots of aches and pains all over my body. Kind of like flu symptoms...maybe a bit worse. A few low grade fevers but nothing major. Plus a terrible taste in my mouth...lost my appetite totally. Everything tasted awful...I believe its from the carbo. I had to force myself to eat. You can get a sore mouth so you need to watch that and let your onc know if you have any problems with it. And of course there will be days/times you will feel really tired and fatigued and need to lay down and rest. Just listen to your body and you will do ok. And of course you will lose your hair...mine started coming out in small clumps...by about day 17 or 18 it was gone. So just shaving your head before hand might be easier on you. You can get some neuropathy in your fingers and feet...but your chemo nurse will keep and eye out for that. After treatment that usually goes away...it did for me. Once you finish with the carbo and taxotere and are just doing herceptin alone it is a piece of cake in comparision.

And yes...once you see how your feeling...I am sure there will be days you will feel up to shopping and going out. TCH is not a walk in the park....I'm not saying it's easy by any means...but it is very doable as they say. I know how scared you are but you are going to do fine. You hang in there and keep asking questions. It won't be long and this will be all behind you.

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 11-03-2008, 08:32 AM   #3
Mary Anne in TX
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Chelee is right on. It is tough at times, but so doable! I got meds before the treatment and had some for home. I took what I needed and pampered myself for the first time in forever! When things got a bit tough, my husband wanted me to quit. Hard-headed soul that I am, I just got more committed to finishing the race! I decided to believe if I felt that bad that day....those crumby cancer cells were dying a quick death! I celebrated!
Take it all one day at a time. Ask for help when you need it and take especially great care of yourself. And remember that everyone here is cheering you on and here to answer questions. Best wishes, ma
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MA in TX.
Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 11-03-2008, 11:20 AM   #4
DanaRT
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Diane,

The TCH regime was much easier than I ever imagined it would be. I had had visions of crawling to the bathroom and feeling very weak and tired. There are many really good days in between treatments. Days 3-5, after a TCH treatment, were my worst but I did manage to get dressed and move around the house butlittle else on those days.

I could run errands, attend swim meets, I did not miss very much. I was nervous about germs and used a lot of hand sanitizer. My husband and I always had a date night after my big chemo because I felt so good on the steriods!

Take all the help you are offered because your energy will be zapped. And take advantage of the energy you have while on the steriods, I could tear the couch apart and vaccum it in four minutes flat!!

The very first side effect I noticed was from the carboplatin, it effected my ability to taste, that was the only indication that I knew the chemo was doing it's job. I hosted my family Christmas two days after my first treatment but I kept it very easy.
My hair began to fall out slowly but by day 14 it was time to shave it off.
Take the anit-nausea meds the minute you begin to feel gaggy. It worked really well for me. I did have some diareha (sp?) and constipation but nothing to where I felt I needed medication for it. I did take medication for heartburn many evenings.

Foods I craved--orange sherbert and taco bell.

Wishing you the best,
Dana


P.S. stock up on thank you cards and stamps. I wrote many every day for all the meals and gifts.
__________________
-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 11-03-2008, 12:22 PM   #5
StephN
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Thumbs up

Hi -
You are getting the "gold standard" for our kind of breast cancer. It has been studied and shows the best chance of long term survival. Keep that in mind as you go along.

And hopefully you will be pleasantly surprised, as I was, that the treatment was not as debilitating as I feared. I did not have Carbo, but had other very harsh drugs.

My most pleasant surprise was that I had NO nausea. I was given the Kytril antinausea at treatment, but never needed any at home. I would even eat during my treatment as my cancer center offers lunch to patients.

Your blood counts will drop and this will cause fatigue. It will also up the susceptibility to germs. I hope you have had a flu shot.

I kept a spray bottle with a light bleach solution at the ready to use in kitchen and bathroom. Also the prepackaged disinfectant wipes are a MUST for your purse. You WILL be able to go to the stores, get gas, post office, etc. Wear your gloves and wash them often. Use the wipes for the carts in grocery stores. (I usually use 2.) If anyone around you is sneezing or coughting, turn around and go the other direction. That includes even stepping out of a checkout line to avoid these germy people or their kids.

It actually HELPED my frame of mind to get out a little even if I felt tired. Freshen up and put your game face on.
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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.

Last edited by StephN; 11-03-2008 at 05:45 PM..
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Old 11-03-2008, 12:33 PM   #6
Jackie07
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I remember TCH as being quite easy, possibly because of the premedication - benedryl, tylenol, all kinds of stuff they gave me before the infusion.

I had the treatment Thursday afternoon. Went back to work Friday. And slept through most of the weekend before going back to work on Monday.
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Old 11-03-2008, 12:44 PM   #7
DanaRT
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Dear StephN,
Your posts always lift me up and inspire me. You contribute a great deal to this forum. I am so glad to hear that TCH is the gold standard treatment as I received it here in the midwest (corn country). I have heard Seattle has some of the best cancer treatment centers in the world.
I enjoyed the comment about putting your game face on. I referred to it as my brave face. You're right it does help to get cleaned up and go do something.
Many hugs.
__________________
-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 11-03-2008, 05:11 PM   #8
rebecca0623
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Dianne - I am right there with you - I will have my 4th TCH Wednesday and only 2 to go then the herceptin. I echo what has been said here - My only side effects of note are some numbness in hands (milder as treatment went on), loss of taste (comes and goes during the 21 days between the TCH) and fatigue. No nausea at all - those drugs are good. My worst days were the 4 days after treatment number 1 and I think alot of that was also fear of the unknown and just waiting for "what will happen next"! I am now wondering what radiation will be like. I also recommend cutting your hair very short or shaving it before you have the major "fall out" as that was distressing mostly for the masses of hairs everywhere before they fell out - I did cut it to bout 1 inch and that helped. Amazingly I have not lost all my hair, just very thin, nor have I lost eyebrows or eyelashes.

We are all with you in this = it is doable and you will get through it = take all the help you are offered and know you are not alone!!! Good Luck!

Rebecca
__________________
Dx June 2008, Age 44
Mother Dx age 54, deceased
1.2 cm tumor right breast, grade 3, ER 4+; PR 3+
HER2 +, invasive ductal carcinoma
Quadrantectomy right on 7/30/08
Path report, all 3 nodes taken were clear!!!!!!
Lymphatic/vascular invasion and sent out BRCA testing
Port in on 9/2/08. Chemo began 9/3/08. TCH (MUGA wrong - echocardiogram says 65% cardiac MRI 59% 9/10/98 elevated liver enzymes, PET scan 9/16/08 all clear.
TC ended 12/17/08
Port blood clot and hosp. 1/2/09
radiation begins 1/8/09


BRCA testing done - results NEGATIVE!

cardiologist said go back to coreg as it helps counteract heart effects of herceptin and slowly increase dosage - now 40mg daily.
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Old 11-03-2008, 05:36 PM   #9
DanaRT
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My eyelashes and eyebrows became very thin at the end of my TCH treatments but grew back quickly. The skin around my nails split wide open and were sore. I used a lot of liquid bandade and wore gloves while doing dishes. Again, it wasn't near as bad as I imagined.
__________________
-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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