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Old 05-23-2014, 07:13 PM   #21
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Join Date: Jan 2013
Location: 'Burbs of Atlanta, GA
Posts: 168
Re: Just Starting Our Fight, Help.

Dear FO,
1. Gaining weight with Steroids - I took the steroids also, but didn't gain any weight - as a matter of a fact, I loss 32 lbs. So tell your wife to mark that concern off her list. Regardless, if it allows the chemo to do it's job - it will be worth it.
2. Hair Loss - I had enough hair for 3 people - big ole southern hair - Loss every bit of it, bad experience - yes, traumatic - no. I knew of a couple of people that used the cold caps when I was going through chemo and they were very successful. I know they are a lot of work to use and can be costly. I believe Amy Robach on Good Morning America used cold caps. She was the news person diagnosed back in October with breast cancer and still has her hair.
[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 - 7 Years Out!! - December, 2019
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Old 05-24-2014, 07:08 AM   #22
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Posts: 129
Re: Just Starting Our Fight, Help.

I am sorry you have to deal with this. You have come to the right place for info and wonderful support and encouragement. As you can see- i had TCH and herceptin. I only had 4 treatment because my her2 cancer HATED herceptin. I pictured it shrieking and yelping into the night. I found it doable. I never threw up- and that was my bottom line. Hugs.
Age 54, married farm wife/school nurse/mom of 5 adult children...March 2012- found 2.5cm hard, non-painful mass on bse. It was not there, and then it was. Yikes.
Biopsy- DCIS, IDC, er-/pr-/her2+++, grade3. 1 node suspicious on us. Biopsy +.
Plan was for Neoadjuvant TCH x6, Herceptin q3w x a year.
May1- first chemo.
May 5- I could no longer feel the mass. Really. Neither could my oncologist.
July 2- 4th TCH- Oncologist cancels last 2 tx due to "complete response"
August6- lumpectomy with axillary node dissection. No disease present in breast. 1 out of 14 nodes + (4mm)
MUGA #2- 72%
Finished 30 rads Oct '12. Mild lymphedema noticed when I had 2 rads left.
Continue Herceptin q3w until next May
April '13- first mammo since surgery- calcium deposits that are " not concerning." Well, they are concerning to ME! Turned loose from surgeon for 6 months! One more Vit H, will make plans then for port removal.
Oct '13- no change in calcium deposits. "See ya in 6 months!" Keeping port for now.
March '14- oncologist says return in 6 mo.
April '14- mammo unchanged. Surgeon will see me in 6 months but no mammo for a year unless something changes. Its getting easier, but oh, boydo i hate that scanxiety! Keeping port until 2 year anniversary of last Herceptin.
Sept'14- bloodwork good, return to onco in 8 months.
Oct'14- surgeon will see me in April '15. Moving on.
May '15- mammo unchanged, keeping same schedule. Tumor markers soon and if all is well port comes out.
July '15-tumor markers normal. See onco in a year. Appt. for port end of month. First grandchild born July 1st- for today, life is good.
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Old 05-24-2014, 07:16 AM   #23
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Location: ottawa canada
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Re: Just Starting Our Fight, Help.

Dear Freaked Out,
Oh this brings back memories. Driving and crying, shaking with terror. Please know that statistically, your dear wife will get past this stage with time, the hair will return, the disgusting metal taste in her mouth from chemo will go, the hours in the john feeling humiliated and in pain will go too. Statistically doesnt mean a hundred percent of us, though, and the loss of a good friend on here who was diagnosed same time as me, with same profile and treatment, belies every word I am saying. But I am praying your dear wife knows, and that you know, you are welcome to vent and rage and cry on here and none of us will tell you to stop. We are holding your hands.
fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011

mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.

I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
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Old 05-24-2014, 12:49 PM   #24
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Re: Just Starting Our Fight, Help.

Here's another long term survivor checking in. I'm from the Netherlands, Europe, and was diagnosed in Jan. 2004. That makes me a ten year survivor. At that time, Herceptin was not yet approved, and they didn't do chemo for small node negative tumors. So I ended up with hormonal therapy.

My sons were aged 3, 8, 12 and 16 at the time. I was terrified of not being there when they were growing up. Especially for my 8 year old, who had behavior issues and was difficult to talk to at times. At first I didn't want to tell them what was going on, but a counsellor at the hospital where I received radiation therapy convinced me to tell them. She said they might find out accidentally or from someone else, and that would make it so much more scary. So we told them, and they took it well. They are 14, 18, 22 and 27 now and are fine young men that we are immensely proud of.

As I didn't have chemo, I didn't lose my hair, but I know from being on this Forum and on the Breastcancer List, another online support group I belong to, that this is one of the toughest things for many women. In our society so much attention goes to the way women look, that when our looks disappear, it feels almost like an amputation. It has nothing to do with vanity and it is a valid feeling. Actually, whatever she feels is valid.

With no lymph node invasion and no spread to other parts of her body, her odds are excellent. Herceptin has changed Her2neu positive disease from scary to hopeful. It is a tough period to get through, but after that, a new normal sets in and she (and you) will be able to move on.

I love it that you are so involved in her treatments. My husband was too freaked out to even discuss it with me. He slept on the couch for two months before he could even look at my scar. I hope she appreciates what you are doing!

Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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Old 05-24-2014, 01:58 PM   #25
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Re: Just Starting Our Fight, Help.

Freaked out~ I have to admit, after the initial shock of the big "C" word, loosing my hair was the most traumatic thing to consider. Prior to chemo, I went with my mom and daughter (she was 12) to pick out a wig. I bought the 2 that didn't make me cry...my daughter helped me pick them out, so it wasn't a shock when I had to use them. Also went and cut/dyed my hair to get it close to the wigs. I just wear a bandanna at home and no one seems to mind. The wig is for work and going out. I have found a place that said they can use your hair to make a partial wig (to wear under hats) and I have just recently ordered another wig to wear as a ponytail under a hat. I can't vouch for their work since it hasn't arrived yet, but prior to your wife cutting her hair, you might want to check it out : http://www.hatswithhair.com/Wig-Made...wn-Hair-1.aspx Oh...also, when the hair started to fall out (exactly 2 weeks after 1st chemo), the crying started again, but I soon felt all cried out and decided I needed a good laugh - so my daughter and I went to the backyard with a pair of scissors (son had the camera) and I let her go to town...it was hysterical - she was laughing so hard cutting my hair...it really was a turning point for me to realize that everything will be OK!

When she is ready, have your wife check out this site. It has been amazing and the women here are so supportive! I have my last big chemo on Tuesday (the time really does fly by!) and every time has been different. Nothing too terrible....haven't even missed a day of work yet! Naps have been great, as well as having food ready in the freezer, for those days that cooking was not high on the priority list. I would also be honest with your girls - we told our kids right off the bat (they were 12 & 15) and they have been wonderful. I also made it a point to never cry in front of them - no need to put them through that. And really, all I needed was time to cry and a big supportive hug from hubby and it made me feel better...no need to try to "fix" anything -just listen!
1/17/14 Day after 44th b-day, Got dx of 2 malignancies Rt breast; ER/PgR- HER2+
1/21/14 Biopsy of spot on left; normal
1/28/14 PET scan - CLEAR!
1/29/14 BRCA normal!
1/31/14 Sentinel node biopsy
2/5/14 Nodes are CLEAR! Stage I/IIa, N0, M0
2/13/14 Start Chemo, 6 rounds for 18 weeks prior to surgery
2/28/14 Port placed
3/6/14 Chemo Round 2
3/27/14 Chemo Round 3 (halfway done!)
4/11/14 u/s shows 2cm tumor about 2x5mm now!
4/17/14 Chemo Round 4
5/8/14 Chemo Round 5 and Daughter's Birthday :)
5/27/14 Last Chemo Party - Round 6
6/17 14 Herceptin only until next Feb.
6/20/14 BMX/Immediate reconstruction DONE
6/30/14 Path report back...NED!
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Old 05-24-2014, 04:39 PM   #26
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Location: Thousand Oaks, California.
Posts: 199
Re: Just Starting Our Fight, Help.

This is an amazing resource and go to site, if you ever have any questions. Her2+ might once have had a poor prognosis, but today with targeted therapies that prognosis has changed. It is always interesting to read when a person was diagnosed, what treatments they have done and how long ago their diagnosis was. Stacey will do well, she has a loving caring supportive husband and treatments have gotten so much better. Please feel free to call if she wants to chat. 818-454-0833
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 05-24-2014, 09:32 PM   #27
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Posts: 38
Re: Just Starting Our Fight, Help.

I don't know if they have them where you live, but there was a free session we went to called 'look good feel better' (or something like that) that had lots of beauty tips for women going through chemo. Mum's not usually that into make-up and stuff, but it was a lot of fun, and the woman from the wigs & turbans shop tried some really beautiful things on her.
She's never been blonde, and wasn't planning on getting a wig, but ended up buying a gorgeous short blonde bob that is stunning on her. Of course she'd rather not be bald, but there is fun to be had in trying new looks, & I wouldn't be surprised if she still wears the wig occasionally after her hair is back. The session had tips on how to use eyemakeup and eyebrow pencil if you lose your lashes and brows - but not everyone does.

It can be good to start trialling the new looks before her hair goes too - start wearing the turbans/ scarves / wigs round the house a bit so you all, including your daughters get used to it before the hair actually goes which can be a more emotional time.

I'm so glad you found this place - it is such a wonderful support. Breast cancer completely shook up our lives, and its quite comforting to be around others who understand, while the rest of the world carries on like everything is normal. And the practical tips are also so useful.
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Old 05-28-2014, 04:36 AM   #28
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Re: Just Starting Our Fight, Help.

One more thought on the hair issue - I don't know how much it costs, but in the waiting rrom I saw a flyer for a company that makes wigs and 'hair under hats' (I think thats like a half wig but without the top of your head covered by it hence needing a hat) that is made from your own hair. I've got no experience of these, but for women with gorgeous hair like your wife, maybe an option to consider?

Anyway, best wishes to you both.
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Old 06-03-2014, 11:14 AM   #29
Freaked Out
Join Date: May 2014
Posts: 6
Re: Just Starting Our Fight, Help.

Well yall have done it again! Every time I log on and read these post, I smile, my heart rate goes up and I feel better about what we are facing. Thank each of you so much! Stacy had her first treatment last Thursday and things went much better that I expected. I did get very upset at our insurance company for not approving the Herceptin in time for the first treatment, so she only received the two chemo drugs. We just got word that the Herceptin is now approved and we go tomorrow to just get it.

Stacy has been a trooper but things did finally catch up to her this weekend. Treatment was last Thursday and joint pain, "bathroom issues" and dizziness started over the weekend. She tried to work Monday but couldn't. She is better today and working. Also, she was able to have the tissue expanders filled a little before starting treatment which made her feel a lot better. The Dr will not fill them again until after Chemo.

Yall have given me so many ideas and good advice I can't thank you enough. After wanting to keep this to myself, I finally told Stacy about this group. I figured if it makes me feel so much better to visit with yall, I have to share the experience with Stacy. There were people around so she did say too much but later told me that she wanted to cry when I told her about finding this site and reaching out. Last thing, I just spoke to a hairstylist about cutting Stacy's hair really short before she starts to lose it. Still have to workout the details but Stacy seems excited about it. I will see if she wants to get on here sometime this week to visit with our new "teammates"!
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Old 06-03-2014, 12:02 PM   #30
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Wink Re: Just Starting Our Fight, Help.

Freaked Out,

I was concerned about losing my hair also. However, it really wasn't a big deal at all. I went to a wig shop, bought a couple and then had my niece shave my head. I did this after the second chemo because so much of it was falling out.

I'm done with chemo now and my hair is starting to grow back. However, I love my wigs! I told my husband that I might just keep my hair shaved. Stacy might feel the same way, you never know. It sure is easier having no hair for working out, hot flashes, no more "bad hair days", and it saves a lot of money and time.

Best of luck to you both
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Old 06-03-2014, 12:05 PM   #31
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Location: South Florida
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Re: Just Starting Our Fight, Help.

You two sound like such a great team and I love how you are so proactive with helping her out! Tell her that with chemo, side effects are weird. I just finished my 6th tx last week (TCHP) and every single time I felt different afterwards. Some times I felt amazing, and once I felt icky for about 2 weeks. Lots of fluids and rest works wonders!

She should also consider looking at wigs soon. I felt much better having them on hand (bought 2) b/c they said after the 2nd tx I would loose hair and it was 2 weeks after my 1st tx! It is also worth it to spend a bit of money on a wig that looks nice (mine have highlights and close to original haircolor). I have had people comment on my "cute haircut" (that didn't know I had chemo) or wonder how I haven't lost my hair. I also just purchased a partial wig to go under hats/baseball caps for the weekend or when I am at the field with daughter. It has been wonderful and super comfy (reg wig w/hat is not so much). Also warn her that the first week or so of wearing the wig may not be that comfy, but it gets better.

You should definitely have her check out the site as well....really wonderful to be able to post and chat about stuff that really no one else "gets"
1/17/14 Day after 44th b-day, Got dx of 2 malignancies Rt breast; ER/PgR- HER2+
1/21/14 Biopsy of spot on left; normal
1/28/14 PET scan - CLEAR!
1/29/14 BRCA normal!
1/31/14 Sentinel node biopsy
2/5/14 Nodes are CLEAR! Stage I/IIa, N0, M0
2/13/14 Start Chemo, 6 rounds for 18 weeks prior to surgery
2/28/14 Port placed
3/6/14 Chemo Round 2
3/27/14 Chemo Round 3 (halfway done!)
4/11/14 u/s shows 2cm tumor about 2x5mm now!
4/17/14 Chemo Round 4
5/8/14 Chemo Round 5 and Daughter's Birthday :)
5/27/14 Last Chemo Party - Round 6
6/17 14 Herceptin only until next Feb.
6/20/14 BMX/Immediate reconstruction DONE
6/30/14 Path report back...NED!
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Old 06-03-2014, 12:20 PM   #32
Carol Ann
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Posts: 1,045
Re: Just Starting Our Fight, Help.

Hi FO, as you can see what different ways there are to approach the chemo side effect hair loss!

My hair is coming back now ... I never did shave my head -- to me that smacked of being sent to a concentration camp. I just had it cut chin length (2 separate haircuts to get it that way, it was way down my back to start, I had to work up to it) and it didn't start to fall out until after the second chemo. I never completely lost it all either.

When it started to come in, my husband cut all the wisps back so it would be all one length.

We all do what makes us feel the most comfortable at the time. That is the most important thing. I got a wig from The American Cancer Society here in my town and wore it one day. Just too uncomfortable and itchy!

Here at home I started wearing chemo caps and then gave it up. Too uncomfortable. I told my husband and 17 year old son (who have both been incredibly supportive), "I'm bald, deal with it," and they did.

I wore a turban when I went out and just started going out without it this week. Just too hot now that its summertime!

Its coming in gray but its coming in! I may color it later, just have to wait and see.

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. :)
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Old 06-05-2014, 05:33 PM   #33
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Location: Katonah,New York
Posts: 228
Re: Just Starting Our Fight, Help.

In addition to all these wonderful word of encouragement and advice, please let Stacy know, I have MUCH better hair then pre chemo...(must update my photo) And I started chemo just about a year ago! My new curls are getting lots of compliments...a small silver lining. Best wishes to you both
3/11/13- normal mammo and US
4/30/13 Found pea sized lump while showering
5/10/13 core bx
5/15/13 dx IDC 1CM,
5/20/13 BRAC 1&2 neg
5/28/13 lumpectomy and SNB, ER/PR/Her-2+, Nodes neg,positive margins
6/13/13 revision of margins . Now clear
6/26/13 first TCH
Chemo Ninja~kutaki Zika Zukuchiri
10/18/13-Bx of calcification-neg whew
11/7/13 Started Radiation.
01/2014- Started Tamoxifen
06/09/14-Steriotactic BX left breast calcification-Benign
06/18/2014-completed one year of Herceptin!
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Old 06-09-2014, 10:22 AM   #34
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Location: Berlin, Connecticut
Posts: 625
Re: Just Starting Our Fight, Help.

Freaked Out,
I have to check in and hand you a small bucket full of hope. See my signature and also my thread “10 years Stage 4…and still a-ok”. It is my hope and prayer that your Stacy will also start that same thread 10 years from now. Yes, please encourage her to join - we would love to welcome her with open arms. This spiritual, physical, and emotional tsunami she is dealing with is no fun to navigate alone.
Love and Hugs,
Kim (from CT)
2001 - Stage 0, lumpectomy, radiation, tamoxifen

2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.

2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle

2011 - Still Herceptin only and NED

2011, June - STOPPED Herceptin and kicked up my heels!

2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.

2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only, waiting for re-enroll in U of W vaccine clinical trial for "booster".
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Old 06-09-2014, 12:32 PM   #35
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SoCalGal's Avatar
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,605
Re: Just Starting Our Fight, Help.

Hey Freaked Out - first of all, get hold of yourself, man! There are so many layers to this crap sandwich, try not to take such big bites. While it feels like the clock of crazy is ticking, the truth is, you have plenty of time to take the time to find your ways. I remember early on, the realization that "this will never be over" and it used to take my breath away. Meaning - I will always be carefully followed, and cancer invaded not just me but my family, too.

I'm an 18 year survivor, my kids were 6 & 8 at the time, and I've been through hell and back a few times. That said, if you met me on the street (or more likely on the dance floor) you would not have a clue to my health challenges. Meaning - it is quite possible to live a normal quality of life even with the worse possible diagnosis.

For you guys, you are lucky in the sense that you found "it" before "it" found you. And in the olden days, when I was a mere 38, Herceptin was still not approved for my use. So, bad news is cancer, good news is it's HIGHLY treatable. Your wife's ONLY job is to survive the chemotherapy. Whatever it takes for her to be relatively comfy and strong enough to get thru the treatments is all that matters. Once that ends, being on Herceptin alone, is quite the cake walk. Cancer is a mind game. Your wife (and you) will need to learn to manage fear, to limit worry time to daylight hours, (no worrying after 4) and to put up affirmations and reminders to breathe, stay present and out of fear. NO ONE has to pretend to be rah-rah warrior strong or any of that crap. Fear can create quite a bit of stress, so I highly recommend finding ways to manage. And, depending on your kids' ages, making sure they have a special journal to color and write about their thoughts on Mommy and also on why Daddy is Freaked Out. (!) The best you can do as daddy bear is to be calm, reassuring and be calm

I am totally confident that she will be around to see the kids grow up, graduate high school, prom, drive, and go to college. We've come a long way.

Now, with regard to your issues - there is nothing that you can say or do that will fix things right now. It is terrifying to try to digest this info, and it takes awhile to get your own footing, or groove on, however you'd like to think of it.

You might want to READ:
It Takes A Worried Man. It is a lovely memoir by Brendan Halpin

You've already found the best online support community. Stay close!
-A SoCal Gal
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.
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
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
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
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
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 and brain MRI shows improvement, resolved areas and nothing new. switch to single agent ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful. working on QOL and managing nausea.
3/18/20--->Just did cycle #5
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her2 breast cancer, her2+, herceptin, tch

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