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Old 07-06-2014, 05:26 AM   #1
Arlyce Kusler
Junior Member
Join Date: Jul 2014
Posts: 3
4 months into Her2+ and struggling!

I'm new to the site and looking for help. I am on my 3rd round of chemo. I've been very positive but now struggling with the treatments and tired of constantly being tired and having this horrible taste in my mouth. I understand this is minor compared to everything going on but need help getting back on track. They lowered my chemo to 75 percent due to liver numbers which scares me. I asked my Doc what tests will be done at the end if this to see if chemo and Herc. Treatments were successful. Her response was, according to studies you should be fine. I am an individual and didn't feel reassured with that answer! Thank you all for your time.
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Old 07-07-2014, 09:44 AM   #2
Join Date: Jul 2013
Location: Gettysburg PA
Posts: 16
Re: 4 months into Her2+ and struggling!

Welcome to the site, glad you found us, sorry you needed to. Cancer is not real fun, though a sense of humor does help. Watch funny movies, read funny books (if you have the attention span to read: I have trouble with that now), etc.
As for the bad taste, yes, I chewed gum constantly for about 2 months before it finally went away.
Being tired goes with the territory too, some are able to exercise, swim, walk, and that helps. At some point my legs felt like they were made of cement, and I was walking like Tim Conway's Little old man (Carol Burnett show, in case you are too young to remember that).
Google the Magic Mineral Broth by Rebecca Katz; it helped me a lot. It makes a ton of broth, so I put some in ice cube trays and melted a few for a quick sip here and there.
Check out the Diet and Nutrition thread, it is really helpful.
Give yourself permission to rest and wait. Consider the butterfly; it needs to struggle to get out of its chrysallis, in order to have strength to fly. Then it has to hang on to the branch and wait for its wings to unfurl and dry. You are going through a struggle, but you will be able to fly when all this is behind you.
Some people also keep a gratitude journal, writing down 3 things everyday that they are thankful for. (Ann Voskamp has a wonderful website about this; www.aholyexperience.com)
Best wishes to you, and prayers for your journey to recovery.
2008-2011 calcifications, get mammo every 6 months, benign
11/11/11 new cluster of calcifications "We caught it early; easy fix" I almost feel guilty to say I have breast cancer, knowing that others go through so much.
11/22/11 stereotactic biopsy
11/29/11 MRI, original calcifications are also cancer
12/13/11 lumpectomy, not clear margins
12/27/11 re-excision, SNB 2 of 3 nodes +
er/pr- her2+
1/23/12 port placement
1/31/12 start 6 rounds TCH, Herceptin for a year
June, July 2012 35 rounds radiation
1/31/13 NED for a few months anyway
6/11/13 ultrasound guided biopsy, it's back; I'm furious this time.
6/24/13 mastectomy (left side), lymph nodes removed, 2 of 17 are +
7/5/13 CT scans clear
9/9/13 Rash,lump along scar; Biopsy;it's back again! Are you kidding me?
9/19/13 skin resection, skin graft from leg
10/1/13 PET scan, lymphatic invasion, nodes under right arm,supraclavicular nodes, sternum show activity. Considered metastatic.
10/10/13 Herceptin, while the team considers options.
11/7/13 Kadcyla, for a year, every 3 weeks.
1/15/14 PET scan shows NO metabolic activity! Happy dance! Thank you Jesus!
I refuse to let cancer take my Joy and my Peace!

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Old 07-07-2014, 11:46 AM   #3
Senior Member
Join Date: May 2011
Location: El Paso ,Tx
Posts: 436
Re: 4 months into Her2+ and struggling!

They will monitor you every 3 month with blood test, for the first 3 yrs and then they go to 5-6 months depending on your dr. An occasional chest x-ray. It is scary when you come off the treatments feels like your security blanket is gone.
dx: DCIS 6/8/10, HER 2+ 7/26/10; Stage I Age 41
Double mast w reconstruction
6 TCH w 1yr herceptin
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.
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Old 07-07-2014, 03:18 PM   #4
Senior Member
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Join Date: Feb 2014
Location: California
Posts: 439
Re: 4 months into Her2+ and struggling!

When I hit my 3rd chemo treatment it was oh so very hard. I truly struggled physically but most of all emotionally because as a nurse I knew the things that I needed to do but my body physically almost couldn't do it. As someone once said this is a Marathon to the finish not a Sprint. You will find times of difficulties where you just need to give your self permission to be ok with that ( like walking during your marathon and not running ) . The biggest thing to remember is when you are at your worse that this is just a moment in time. It's often like a roller coaster ride. Ups and downs. I always found it relaxing to take a shower and have a good cry then relax in a hot bath. And although I am only 7 months into this journey and officially NED as of Bmx date,I too worry about my safety blanket . But I also know I will be closely monitored for several years to come.
]11/13 Dx IDC left breast
11/19/2013 Inflammatory Breast Cancer stage 3c grade 2 Er- Pr- her2+++
Node involvement suspected based on CT
12/13 port placed
12/13 neoadjuvant DD AC xs 4 rounds started
02/14 taxol/herceptin started every week xs 12 rounds
Herceptin for 1 year
BRCA1&2 negative
5/06/14 last round taxol/herceptin. Chemo done!!!
5/07/14 clear CT scan
6/11/14 Bilateral Mastectomy Done
6/15/14 8mm tumor post chemo. Removed by bmx
6/15/14 lymph nodes 0/9
6/15/14 officially Cancer Free
7/11/14 emergency surgery to left breast . Wound refused to heal and broke open. New TE placed
7/28/14 emergency medical procedure now to right breast( post op 6 weeks mastectomy ) wound opens.
8/25/14 - 10/07/14 Radiation
11/24/14 CT of Brain clear
01/23/15 One year Herceptin Complete
02/04/15 Diep done
5/01/15 1 year Ct scan- mass in thymus
6/23/15 repeat CT mass in thymus still present
6/30/15 biopsy thymus 7/03/15 mass Benign! Diagnoses Thymic hyperplasia rebound ( chemo at fault, no long term health effects)
7/08/15 phase 2 diep
11/23/15 phase 2b ( reconstructive surgery with lipo)
03/05/18 Vinnie Myer 3 D nipple tattoos complete.
11/19/2018 5 years since Dx of IBC stage 3c remain NED.
11/19/21- 8 years today I officially remain NED and in 12 days I will be having a lymphnode transfer to help decrease some mild lymphedema! Still working, living life and soon to see a day I thought never would happen and that’s becoming a grandparent June 22nd.
11/19/2023 - 10 years since diagnosis and I remain NED
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Old 07-08-2014, 06:15 AM   #5
Aussie Girl
Senior Member
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Join Date: Jul 2013
Posts: 260
Re: 4 months into Her2+ and struggling!

Hang in there, Arlyce.

It is a struggle. I found eating cold things helped with the old taste buds. Sweet things and soft meaty things I could taste. Carbohydrate was all cardboard - Yuck! Mints for any metallic taste.

Cancer leaves this great question mark over your life. You get told a lot of statistics but there is nothing to tell you what is going to happen to you as an individual. Where I live ( and this is the general medical consensus), follow up of early breast cancer consists of (at ever increasing intervals) an examination by a surgeon, later a general practitioner (family physician), a mammogram/US scan, and basic blood tests (FBC and ELFTs). No tumor markers or PET scans as they are not reliable in this setting. In the future, special tests monitoring breast cancer through DNA circulating in the blood will likely be used. Otherwise, you get investigated if you get symptoms like ongoing bone pain, headaches etc.

It'd be so good just to know........Oh well.

I am a year out now and almost finished my Herceptin infusions. Life does improve after the heavy chemo finishes, again after Herceptin finishes and again, I'm told, after the first anniversary of the heavy chemo stopping.

Although a natural pessimist, I've trained myself to think of myself as being in the group of women that are long term survivors. I am pragmatic. It is pointless worrying now that I might "die young". I know the chemo markedly improves outcome. I've done everything I can for myself and I am just going to keep enjoying the journey.

Let us know a little more about yourself and feel free to vent your feelings on this forum. It helps.
Warm wishes

Aussie Girl
31mm Infiltrating duct carcinoma
Grade 3, ER/PR-, HER2+, Neg Sentinel nodes x 5
49mm field of DCIS
17 June '13: Screen detected impalpable mass, Mammogram neg, US.
25 June '13: Diagnosed after multiple biopsies and MRIs
28 June '13: Left lumpectomey
4 July '13: Left Mastectomy
12 August '13: Commenced TCH chemo
Mid December '13 : TCH finished. Herceptin continuing three weekly.
4 August 2014- Herceptin infusions finished.
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