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Old 07-02-2014, 03:26 PM   #1
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Join Date: May 2010
Posts: 184
Things I've learned

Just some things I've learned along this interesting journey I never wanted to go on...
1. drink more water than you think. It doesn't seem you can drink too much unless it's in one sitting. Drink so your pee is light yellow and often.
2. Eat your veggies and lean protein but eat food you enjoy too.
3. Have a glass of wine now and then.
4. Learn to be comfortable in your own skin and any that is usually covered in hair. Do what works for you and experiment with head coverings. The first time around I wore wigs exclusively and later found a great freedom in scarves and hats. I love it when women go out bald but just couldn't do it for me. In winter I found wearing a running scull cap under my scarf and some hats was perfect not too hot or too cold. It was fun to play with different scarves and tying them various ways. Avoid hats on windy days!!!
5. Keep moving. Exercise or even slow walks. keep as much normal routine as possible but if you can't do it allow that. Your body needs to move but is fighting a battle and the chemo wears it down some days.
6. Do things in stages even if it takes 2 or 3 times longer. The sense of accomplishment feels good.
7. Eyebrows can make a world of difference. Find a pencil or cream powder you like and practice with small strokes. You now have the chance to make them what you want but go online or to a beauty store to get them right for your face.
8. Salt and baking soda in warm water squished in mouth does wonders for mouth sores. Tastes horrible!
9.Tastes change with chemo. I was shocked to find I did not care for my decaf coffee anymore but loved decaf and herbal tea that I hardly ever drank. Now I like tea more and enjoy coffee at times. I also found a craving for cottage cheese and canned peaches that I was served as a child. The craving immediately ended when the chemo was done.
10. Ask for help if you need it and be kind to yourself and others. We all ended up in a place we didn't ask for but we can choose to be miserable or happy.
11. Drink water....

I know this is not the extent of my learning and maybe others will chime in with their knowledge.
With lots of hugs... Cathy
3/06 DX stage III er-pr-her2+++ breast, 1+node
age 49 and 364 days
3XAC 4X taxol and herceptin continue herceptin one year
bilat mastectomy w/TRAM
32 rads
9/08 recurrance 4 sternal nodes
mediastinoscopy, able to remove 3
taxotere, carboplatin, herceptin, x6
continue herceptin indefinately
5/10 recurrance in same node/area
mediastinoscopy, removed nodes
added tykerb
27 rads
10/18/10 PET shows inflammation no active disease
8/2011 recurrence one right mediastinal node, xeloda and proton radiation to node.
D/C xeloda due to toxicity
12/5 PET scan clear
2/2012 colon blockage, breast cancer
(never thought it could go there! thought I was constipated)
start abraxane, herceptin, continue tykerb
10/2012 Kidney ablation (renal CA!)
3/2013 CT and biopsy R kidney (BC met to R kidney)
4/4/2013 Begin Kadcyla
7/30/13 Craniotomy cerebellar mets, 1.7cm 3cm
Sept 4-6 post op cyberknife
Sept 23 ablation right kidney (blow up pesky breast ca met)
Oct headaches MRI Oct 10 (only surgical changes ! Yay!)
Short of breath. CT, pulmonary function, echo
New crap in right lung heart good. Pooh!
12/13 DC kadcyla. Begin halaven
2/14 MRI brain NED Yay!
4/3/14 CT mostly stable but breast mets r kidney growing
4/16/14 ablation right kidney again
Continue halaven, tykerb
dc halaven gemzar?
2nd opinion May 14
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Old 07-03-2014, 09:53 AM   #2
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Join Date: May 2011
Location: Denver, CO
Posts: 1,427
Re: Things I've learned

Dear Cat,

Thanks for sharing these insights. Keep up the good work.
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 07-03-2014, 12:10 PM   #3
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Join Date: Jun 2014
Posts: 113
Re: Things I've learned

Great suggestions! I agree with, and have done all of them and am really feeling good about myself physically and mentally during this otherwise trying time. I'll add a few, if that's okay

1. Nap when you feel like it (if you can that is). Even a 1/2 hour power nap can work wonders to keep you going.

2. Coconut oil pulls in addition to the salt/baking soda also works wonders. It's kind of gross, but it works. Just take 1 tsp. c-oil and swish around in your mouth. The experts say 20 minutes, good luck with that! I think a few minutes is about all I can tolerate. It does feel fresh after.

3. Moisturize your whole body often. It helps fight the dryness from chemo. Also, each night, I place a small amount of Aquaphor in each nostril (icky but it works!) to ward off nasal dryness. I've never ever had a bloody nose and I'll be damned if they are going to start now.
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