HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Reply
 
Thread Tools Display Modes
Old 11-09-2015, 08:40 AM   #1
spiritualabundance
Senior Member
 
spiritualabundance's Avatar
 
Join Date: Sep 2015
Posts: 52
Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!

I am not trying to be vain, I am trying to prepare my (already completely emotionally devastated) 14-year old daughter. I expected to warn her about the hair but the nails, too??? If you did, or didn't, or wonder, too, please reply. I received great suggestions and information about taking this protocol and appreciate all replies. I am still waiting for my 2nd opinion with another oncologist to be sure this is the right course and most up-to-date with the leaps and bounds research has offered to BC treatment.

Thanks everyone! Ladies and gents!
__________________
6/6/2015-Found a lump in my L breast at 45 years young.
6/12/2015-First u/s
7/2015-Mammogram and 2nd u/s (same day)
8/7/2015-Needle aspiration u/s biopsy. Doctor indicated looked malignant. (thanks doc!! the wait after that sucked)
8/20/2015-Diagnosed w ER+,PR+,HER2+ BC in L breast (now 46 years young.)
9/24/2015-Saw first surgeon, referred by oncologist. Great guy. Office staff not advocates.
10/12/2015-Met w Plastic Surgeon. Amazing doctor. Recommended not immediate due to chemo and 'just get the cancer out first' attitude. Will do recon with him after chemo is complete.
10/12/2015-Called first surgeon's office who told me that it's been too long since the first consult and will need to schedule another consult on 10/24 and then schedule surgery within 2-3 AFTER that date. (BITE ME)
10/12-Found a new surgeon.
10/15-Consulted with new FEMALE surgeon. She was AMAZING! Asked me if I wanted to do the surgery on Monday (in 5 days). Stunned and thrilled!!
10/26/15-Surgery for bilateral mastectomy, port placed, and 3 nodes removed for SNB. 3 drains installed.
10/28/15-home from the hospital to recover.
10/30/2015-Follow up with surgeon. Drains removed. Was told tumor was removed but had more than doubled in size from 1.3 to 2.9cm. 3 nodes removed, all negative. Healthy breast was clear but several suspicious areas on affected left breast. Looks to be Stage 2A. Oncologist appt next week.
11/5/2015-Follow up with oncologist. Planning to start chemotherapy (Herceptin, Taxotere, and Carboplatin together beginning November 30th). Very nervous about side effects, low white blood count, anemia, steriods, etc, etc, etc. I'm not usually one to medicate myself for anything. Not ready for this. Kinda scared.
11/30/2015 - Isaiah 41:10 today for sure. Today was my first day (round) of TCH chemo treatment. Before receiving the cocktail, I saw the doctor who delivered the news that my CT scans (abdomen, chest, and pelvis were all clear). Praise God!! Feeling okay right now after chemo, just a bit sleepy. We'll see how the Neulasta, along with the other effects, rear their lovely heads over the next few days. Prayers please, as always.
12/17/2015-Decided it was time to shave my head and face the music.
1/11/2016-Went in for 3rd treatment. UGG. Spoke to the doctor first. Asked him to reduce the Decadron. Agreed! From 10mg to 4mg dosage. YAY! It still worked and I was able to rest and live. Praise God. I jokingly told him if he felt like dropping some of my treatment, to feel free. Guess what?! He agreed! Agreed to drop my 6th treatment meaning that I now only have 2 left and in March I'll be able to begin the reconstruction process. Additionally, he agreed to schedule me for a brain MRI to just double check for any spread. Anxiously awaiting.
spiritualabundance is offline   Reply With Quote
Old 11-09-2015, 09:41 AM   #2
Donna H
Senior Member
 
Join Date: May 2014
Posts: 307
Re: Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!

I did TCH. I lost my hair. My nails got severe damage - funny brown lines, ridges and very weak but they all held on. My last chemo was September 2014 and my nails are still weak but look ok. Also, my hair didn't start to grow back until I completed the year long Herceptin. The MO or nurses didn't mention that. My hair came back virtually the same as it was before chemo - just a little thinner still. Drink as much as you can while doing chemo. Try to find whatever tastes good. Green tea worked great for me.
Donna H is offline   Reply With Quote
Old 11-09-2015, 10:55 AM   #3
Carol Ann
Senior Member
 
Join Date: Dec 2013
Posts: 1,045
Re: Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!

I lost all my toenails a few at a time, but my fingernails were ok. I took alot of epsom salts baths, and none of my nails ever got infected or hurt. My hair didn't start to fall out until after the second round of TCH; I had it cut to chin length and then pulled it out a bit at a time. I never shaved it off, but yes it all fell out.

My onc nurse told me to drink 3 liters a day ... hydration is VERY important. I drank alot of stevia sweetened ginger ale to help with the godawful indigestion I had from the Taxotere. Also barley soup to help with the constipation I had from the steroids, I posted it here somewhere so if you put barley soup in the search engine here it should come up.

I had a wig but only wore it once; I wore a turban when I went out and was bald around the house the rest of the time.

If you are Stage 2 you should qualify to have Perjeta added to your chemo ... definitely ask your oncologist about this! It is a newer drug that is getting good results when given with Herceptin.

Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
Carol Ann is offline   Reply With Quote
Old 11-09-2015, 12:38 PM   #4
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 563
Re: Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!

Best advice I was given for nails was - paint finger and toe nails with a dark nail varnish (not a gel or acrylic). Do this all the time when on chemo. I continued after chemo. A few nails were lost and some marked but majority ok. I think water based varnish and acetone free remover best. Has to be dark colour. My daughter liked to paint them for me!
I wore a scarf at first when hair started to change condition and then it just brushed out. I wore my wig for about 9 months until hair about 1/2-1" long. As I replaced the wigs I went shorter and shorter until I eventually plucked up the courage to go out without wig on! It did start to grow again before my last chemo! It grew back very thick and curly!!
I found nausea a bit of a problem - worse if I didn't eat. So had to eat little and often. Also carried mints with me all the time.
I am on Perjeta - worth asking about.
I was surprised how well I felt when on chemo!
Juls
Juls is offline   Reply With Quote
Old 11-09-2015, 06:22 PM   #5
agness
Senior Member
 
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
Re: Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!

I wore Penguin Cold Caps (basically super-chilled ice pack bonnets) and I had some loss and shedding that continued for a couple months after my last dose of chemo but I alway had hair. It was worst around the edges of my scalp but I think getting extra strips they call brow bands would help with that.

I put my feet, in socks, into ziplock bags and then into a basin of ice each infusion. I had no issues with toenail damage or neuropathy. I would hold a metal water bottle filled with ice and water as well, but probably not as much as I should have. Again, no nail or nerve issues.

I was also taking a lot of Chinese herbs and targeted nutritional support during and after treatment that might have helped.
__________________
  • Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall.
  • Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy.
  • 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED.
  • 10/27/15 atypical uptake in right cerebellum - inflammation?
  • 12/1/15 Leptomeningeal dx. Starting IT Herceptin.
  • 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly
  • 3/2016 - stable scan
  • 5/2016 stable scan
  • 7/2016 pseudoprogression?
  • 9/2016 more LM, start new chemo protocol and IV therapy treatment with HBOT
  • 11/2016 Cyberknife to temporal lobe, HBOT just prior
  • 12/2016 - lesions starting to show shrinkage
  • 8/2017 - Stable since Dec 2016. Temporal lobe lesion gone.
  • Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing.
  • Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.
agness is offline   Reply With Quote
Old 11-09-2015, 06:24 PM   #6
jaykay
Senior Member
 
Join Date: Oct 2012
Posts: 645
Re: Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!

Lost hair 2 weeks after the first chemo. Nails were fine until after chemo and they were all this yucky yellow/brown color and very week. Did not get manicures on purpose but should have. 3 years later, nails are still very weak and full of ridges. I've tried everything...

My hair grew back EXACTLY as it was before chemo. Curly/wavy and very thick. it did grow faster after I was finished with Herceptin

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!
jaykay is offline   Reply With Quote
Old 11-09-2015, 07:42 PM   #7
Kkmom
Senior Member
 
Kkmom's Avatar
 
Join Date: Jan 2013
Location: 'Burbs of Atlanta, GA
Posts: 172
Re: Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!

I also did TCH. I had enough hair for two people -big ole southern hair. Starting losing hair on Day 14, just as the nurses predicted. Turned out to not be that big of a deal. I figured at that point, there was nothing else cancer could not to be. So it seemed to be uphill at that point. I also had a great wig -worn it once and it is somewhere in a closet. I worn the caps with decorative bows or hats. Remember to ask about the prejeta. It is a game changer now in chemo. Stay strong.
__________________
[FONT=Tahoma]Dx 12/14/2012, IDC, 2cm, Stage II, Grade 2, 4/5 nodes, ER+/PR+, HER2+[SIZE=2][COLOR=Blue]
Surgery 12/28/2012 Lumpectomy (Right); Lymph Node Removal: Axillary Lymph Node Dissection (Right)
Chemotherapy 02/06/2013
Herceptin, Carboplatin, Taxotere Started 6 rounds on 02/06/2013 Herceptin
Finished chemo - May 22, 2013
Radiation Therapy 06/12/2013 - 36X External
TM Marker - 13 October, 2013
TM Marker - 15 November, 2013
Annual Mammagram - 3D - Both Breast - CLEAR!!!
Colonscopy - 1st-Clear - November 18, 2013
CT Scan-Results-Clear - November 27, 2013
BC Diagnosis-1 Year - December 14, 2013
TM - holding steady at 15 - December 24, 2014
TM - 24.2 - January 12
Herceptin Treatment - Last One-February 4, 2014!!!
TM - 3.7 - February 4, 2014
MRI & CT - February 21, 2014 - All Clear
NED - and my doctor said - "well, it looks like you are NED - your MRI and CT are clear - Febuary 25, 2014
TM - 18.2 - February 21, 2014
Port Removed - Scheduled for Wed, March 19, 2014
Port Removed - Yeah!!! I feel lighter already!!!
TM - 15.3 - March 25, 2014
Diagnostic 3D Mammogram - Rt Breast - All Clear!!! - Tuesday, May 13, 2014
TM-15.5 - June 25, 2014
Diagnostic 3D Mammogram - Nov. 2014 All Clear!!!
Diagnostic 3D Mammogram-Rt Only-May,2015-All Clear!!!
Diagnostic 3D Mammo-Annual-Nov 2015-Right Clear!!! - Left Breast-found 5 mm CYST. Aspirated - all clear!!
TM - Nov 2015 - 18.2
NED-December, 2015 - 3 Years NED!!!
TM-Feb 2016 - 13.7
TM-June 2016 - 13.3
TM-Oct 2016-10.0
Annual 3D Mammo-Nov, 2016-All Clear!!!

Annual Mammogram - November 2017 - ALL CLEAR. i AM 5 (YES) YEARS OUT!!!

NED - 10 Years Out!! - December, 2022
Kkmom is offline   Reply With Quote
Old 11-09-2015, 07:59 PM   #8
Pat94
Senior Member
 
Join Date: Jul 2013
Posts: 100
Re: Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!

I lost my hair at the start of the 4th week of chemo. It started growing back about 2 months after chemo ended. Mine was slow growing forever but I had enough to take off my caps 6 months after the end of chemo. It is thinner but there.

Lots of people appeared to dislike their wigs. I tried baseball caps and couldn't stand the brim hanging over so went with toboggan caps. As cold as I was all of last winter I was thankful to be wearing them. Accept temporary baldness as a reality and decide how you want to address it in advance.

I only lost 2 toe nails and that was because I stumped my 2 big toes while on blood thinner. It takes a year to have toe nails grow back and I am not sure mine will be by the end of my year. My fingernails are tightly attached but strange colors of pink and white with vertical lines. They shred constantly but they are there. Most people don't notice them being anything but very short.

It will help with neuropathy if you ice your hands and feet during chemo. I found bags of frozen veggies worked well. Some people use ice caps to prevent hair loss but some oncologists don't like them.

Good luck.
Pat94 is offline   Reply With Quote
Old 11-10-2015, 08:12 AM   #9
snolan
Senior Member
 
Join Date: May 2011
Location: El Paso ,Tx
Posts: 436
Re: Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!

I lost my hair two weeks into TCH, lost my finger nails but not my toe nails. I chose to shave my head when the hair started falling out it was easier to manage and less messy. I have heard people using cold packs on their hands to save their nails, I didn't hear about it until mine fell off so I couldn't tell you if it works or not.

I wasn't a wig wearer, I preferred scarfs at work and hats when out and about, around the house I wore nothing. My kids went with me to shave my head and loved to rub my head when it was bald. They get used to seeing you like this and they know it is only temporary. For me it was like a badge of honor, I was kicking cancer's ass and bald is beautiful.
__________________
dx: DCIS 6/8/10, HER 2+ 7/26/10; Stage I Age 41
Double mast w reconstruction
6 TCH w 1yr herceptin
Tamox.
25 radiation tx
Removal of expander on L due to infection. Tried to save it had 3 bouts of antibiotics and went to see plastic surgeon 2-3x wk to get drained. Saving it was my idea not his. But lost it anyway.
Reconstruction set for December 21st,2011
Finished chemo 12/2010
Finished Herceptin 8/26/11
Reconstruction 12/21/11
Expanders exchanged for silicon 3/19/12
Nipple reconstruction 5/18/12
Nipple tatooing- 7/9/12- All done yay!
11/22/12-Went back to get scar tissue stretched to even the outside of breast, didn't work due to it being radiated skin.
snolan is offline   Reply With Quote
Old 11-10-2015, 10:46 AM   #10
agness
Senior Member
 
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
Re: Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!

I know that hair loss is the most prominent side effect of breast cancer chemotherapy but I don't believe that embracing this unintended side effect helps anyone. It is what it is, or, if you can afford it (since at present it isn't available to everyone) you can use cold caps.

The reason that breast cancer chemotherapy drugs cause hair loss is because they are targeting skin cells -- our breasts, while glandular tissue, also are predominantly evolved from our epidermis. Our hair also emerges from our skin, and so the two are connected. Effective chemotherapy drugs for treating the one unfortunately equally affect the other, especially since our hair cells are continually dividing (chemotherapy drugs are cell phase specific, going after rapidly dividing cell predominantly).

It isn't often discussed but it is known by the pharmaceutical companies, and doctors as well, that 3% (or more) of patients receiving breast cancer chemo will experience permanent alopecia -- that means that you hair doesn't grow back after chemo. Suddenly a temporary badge of honor, unintended as it may be, becomes a small chance of permanent disfigurement. (see http://aheadofourtime.org/)

I heard from a MO and researcher that I should use cold caps because she was noticing this from young TCHP patients that she was treating and that sealed it for me. Using cold caps costs around $2500 out of pocket, including ice chests and dry ice if your facility doesn't own a proper freezer. I had two friends, but you could do it with one, who helped me out on the day of treatment with cap changes every 30 minutes. It was a hassle and as my hair loss increased during treatment the caps became colder but no one knew I was going through cancer treatment which made it a profoundly different experience for me -- both good and challenging.

The additional benefit of wearing cold caps is that it protects your follicles from chemo when the cells are done with the resting phase and starting to grow again. I had a good quarter inch of new hair growth around my final chemo dose which put me about akin to my chemo group sisters who stopped chemo (with no ongoing Herceptin) about 6 weeks before me.

Hair regrowth is weird during Herceptin for sure, in my group we noticed that the regrowth felt more fur like. It also slows things down -- kinda makes sense since again, we are treating the skin. Since stopping Herceptin the texture is much better. My hair is thick and full and a little uneven still. My stylist and I are slowly growing the new stuff through the old to get it eventually to a smart bob.

Here's a great discussion thread to learn more about the experiences of cold cap users:
https://community.breastcancer.org/f.../735873?page=1
__________________
  • Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall.
  • Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy.
  • 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED.
  • 10/27/15 atypical uptake in right cerebellum - inflammation?
  • 12/1/15 Leptomeningeal dx. Starting IT Herceptin.
  • 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly
  • 3/2016 - stable scan
  • 5/2016 stable scan
  • 7/2016 pseudoprogression?
  • 9/2016 more LM, start new chemo protocol and IV therapy treatment with HBOT
  • 11/2016 Cyberknife to temporal lobe, HBOT just prior
  • 12/2016 - lesions starting to show shrinkage
  • 8/2017 - Stable since Dec 2016. Temporal lobe lesion gone.
  • Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing.
  • Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.
agness is offline   Reply With Quote
Old 11-10-2015, 02:00 PM   #11
spiritualabundance
Senior Member
 
spiritualabundance's Avatar
 
Join Date: Sep 2015
Posts: 52
Re: Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!

Carol Ann, did you receive Perjeta? I was told today that I didn't really qualify for it because I had surgery first and, as of now, I'm not metastatic. Just wondering if that is the case for real. Thank you!
__________________
6/6/2015-Found a lump in my L breast at 45 years young.
6/12/2015-First u/s
7/2015-Mammogram and 2nd u/s (same day)
8/7/2015-Needle aspiration u/s biopsy. Doctor indicated looked malignant. (thanks doc!! the wait after that sucked)
8/20/2015-Diagnosed w ER+,PR+,HER2+ BC in L breast (now 46 years young.)
9/24/2015-Saw first surgeon, referred by oncologist. Great guy. Office staff not advocates.
10/12/2015-Met w Plastic Surgeon. Amazing doctor. Recommended not immediate due to chemo and 'just get the cancer out first' attitude. Will do recon with him after chemo is complete.
10/12/2015-Called first surgeon's office who told me that it's been too long since the first consult and will need to schedule another consult on 10/24 and then schedule surgery within 2-3 AFTER that date. (BITE ME)
10/12-Found a new surgeon.
10/15-Consulted with new FEMALE surgeon. She was AMAZING! Asked me if I wanted to do the surgery on Monday (in 5 days). Stunned and thrilled!!
10/26/15-Surgery for bilateral mastectomy, port placed, and 3 nodes removed for SNB. 3 drains installed.
10/28/15-home from the hospital to recover.
10/30/2015-Follow up with surgeon. Drains removed. Was told tumor was removed but had more than doubled in size from 1.3 to 2.9cm. 3 nodes removed, all negative. Healthy breast was clear but several suspicious areas on affected left breast. Looks to be Stage 2A. Oncologist appt next week.
11/5/2015-Follow up with oncologist. Planning to start chemotherapy (Herceptin, Taxotere, and Carboplatin together beginning November 30th). Very nervous about side effects, low white blood count, anemia, steriods, etc, etc, etc. I'm not usually one to medicate myself for anything. Not ready for this. Kinda scared.
11/30/2015 - Isaiah 41:10 today for sure. Today was my first day (round) of TCH chemo treatment. Before receiving the cocktail, I saw the doctor who delivered the news that my CT scans (abdomen, chest, and pelvis were all clear). Praise God!! Feeling okay right now after chemo, just a bit sleepy. We'll see how the Neulasta, along with the other effects, rear their lovely heads over the next few days. Prayers please, as always.
12/17/2015-Decided it was time to shave my head and face the music.
1/11/2016-Went in for 3rd treatment. UGG. Spoke to the doctor first. Asked him to reduce the Decadron. Agreed! From 10mg to 4mg dosage. YAY! It still worked and I was able to rest and live. Praise God. I jokingly told him if he felt like dropping some of my treatment, to feel free. Guess what?! He agreed! Agreed to drop my 6th treatment meaning that I now only have 2 left and in March I'll be able to begin the reconstruction process. Additionally, he agreed to schedule me for a brain MRI to just double check for any spread. Anxiously awaiting.
spiritualabundance is offline   Reply With Quote
Old 11-10-2015, 03:02 PM   #12
Carol Ann
Senior Member
 
Join Date: Dec 2013
Posts: 1,045
Re: Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!

No I did not, but it was because I was Stage 1; when I was diagnosed 2 years ago it was for Stage 2 and higher, so I didn't qualify. I have seen other people here, Stage 2 early stagers ... receive Perjeta, and they are not metastatic.

I would definitely ask for a second opinion on this!

Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
Carol Ann is offline   Reply With Quote
Old 11-10-2015, 03:08 PM   #13
Carol Ann
Senior Member
 
Join Date: Dec 2013
Posts: 1,045
Re: Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!

http://www.perjeta.com/?cid=per_PS_M...m_term=PERJETA

Here is more info. It does refer to presurgical use; so that may be what your doc is referring to.
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
Carol Ann is offline   Reply With Quote
Old 11-10-2015, 05:44 PM   #14
MaineRottweilers
Senior Member
 
MaineRottweilers's Avatar
 
Join Date: May 2013
Posts: 570
Re: Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!

With my first Dx, I never lost nails, I did keep them painted dark but they did become quite brittle and it took over a year for them to become strong enough to use as tools without fear of shredding them. My hair started shedding around day 16 after TCH and was growing back as soon as I stopped Taxaotere and by one year it out, it was shoulder length, thick and curly (as it had been before). Yeah, just about the time I returned to normal, I was restaged. The pits!

I started shedding out on day 14 this time. I have not been diligent about painting my nails this time. I'm taking my chances. I'm on THP this time but I am stage IV now so that should have no relevance to your treatment plan. Perjeta was still in trials when I was first treated.
__________________
Tracy Arcari
___________________________________________
11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%)
HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!
2/5/18 CT & BS = STABLE

//
MaineRottweilers is offline   Reply With Quote
Old 11-10-2015, 07:55 PM   #15
Debbie L.
Senior Member
 
Debbie L.'s Avatar
 
Join Date: Jul 2006
Posts: 463
Re: Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!

SA and others, I started a new thread to talk about adjuvant Perjeta/pertuzumab.

Debbie L.
Debbie L. is offline   Reply With Quote
Old 11-12-2015, 07:06 PM   #16
StephN
Senior Member
 
StephN's Avatar
 
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Re: Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!

Hair went right on schedule, but I had my head buzzed, so it was not a big deal.
Nails were basically fine. I do not polish or use false ones, so just kept them shorter as there were times a think white line appeared and that would be a weakened place due to chemo.

Only lost one little toe nail, which grew back easily. Left great toe nail lifted and had to be cut way down, and has not quite grown in right yet!

All the best with your treatment.
__________________
"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.
StephN is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 03:51 AM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter