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Old 10-10-2012, 05:51 PM   #21
Laurel
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Re: more transition for me

Pam,

I have always found the elderly to be among the most interesting and inspiring of people. Mind you they will tell you exactly what they think, but that is refreshing. I certainly realize this is not the situation you ever expected to find yourself and I feel for you, I truly do. All I can offer is that many of those ladies love hobbies and are very good at them, even if a bit mentally challenged so often the fingers will still nimbly thread the needle to embroider or flash those knitting needles. Life brings so many changes and seasons. I am proud of your courage and all that I know you will find to give to those around you in your new environment. You are a true gem among us. I am confident you will bless and be blessed. Bloom where you are planted....
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Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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Old 10-10-2012, 11:07 PM   #22
Pray
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Re: more transition for me

Oh Pam I'm hoping and praying you regain your strength real soon. Gods blessings to you sweet woman. My Aunt went into assisted living just about a year ago for dementia. Two of the other ladies their I thought they worked their were always helping with baking classes and bingo day and most of the time spending time with the other residents after first six months I asked how long they worked there and they said we don't we live here. They said they wanted to live some where they could stay busy! You sure have been given so many great ideas here from your fellow sisters, that I can't wait to hear what your knew plans will be. You have always been a great inspiration to all of us. Look forward to your next Post. Peace Little Sis!
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dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 10-11-2012, 09:46 PM   #23
ElaineM
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Wink Re: more transition for me

Know that we are here for you !!
There are stretching exercises you can do yourself from your wheelchair and exercises to improve curculation in the lower part of your body. If you have access to a transfer shower bench you can learn to wash your body parts-----perhaps one new body part every few days.
All those will improve your strength eventually. Maybe you can get some videos or DVDs of seated exercises to watch and follow along when you have time. Even something that does not seem like a big exercise can help rebuild strength. Don't let anyone tell you there is no hope !!!!!!!!!!!
I had a back injury which not only fractured my back, but caused nerve damage the beginning of July. I was in the hospital most of the summer and very weak after I came home. I rebuilt most of my strength myself a little at a time. Today I climbed over the wheelchair twice --once to let the visiting nurse in after she couldn't figure out how to unlock my door with the key I gave her before she went to her car to get something she forgot. !!!!!!!!!!!! I guess I am getting stronger.
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12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
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14 Year Survivor
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Old 10-14-2012, 05:53 PM   #24
Laurel
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Re: more transition for me

Pam,

Please let us know how things are going for you.
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Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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Old 10-15-2012, 11:23 AM   #25
Pam P
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Re: more transition for me

Thanks for all the suggestions and encouragement. I’m trying to get adjusted here. I’ve been here for 2 weeks today. I finally got some furniture – I started out with a card table & folding chairs.

The meals are good; the people are friendly. I don’t qualify for any more physical therapy according to insurance. I do the seated exercises on my own. But I need to do something else to get my legs strength back to standing/walking. I’m still trying to figure out how to get help for that. There is an exercise group here weekdays. It’s really just stretching but I go to that too.

Some frustrating things about being in assisted living. Example: Nurse told me I couldn’t wear compression socks (which I bought at a drug store after the surgeon suggested it) since I didn’t have a doctor’s order on file for it! I promptly got an order faxed. Another nurse said I should have a schedule for when I need to use the bathroom (7, 11, 3. 7, 10, for instance) for their convenience I suppose. How ridiculous – I need to go when I need to go. I asked him if he peed on a schedule. Hard for me have anyone tell me what to do!

Emotionally I’m doing okay but I miss my home, family, pets etc. Thanks, Laurel for asking how I’m getting along.
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Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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Old 10-15-2012, 11:46 AM   #26
BonnieR
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Re: more transition for me

Sounds like they could use some sensitivity training there! Who ever heard of peeing on schedule? I understand their position, but really....they are there for YOUR convience. Times are changing and often people are in care facilities for a short term and the old treatment approaches dont fit the new profile. Maybe your mission is to keep notes and suggestions from your perspective for them to consider. Later. No need to piss them off too much while you are there.
Have you considered keeping a journal? You could write your observations and concerns. As well as visitors and greetings you receive. Things you might clip from magazines, that sort of thing.
Keep the faith!
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Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 10-15-2012, 02:41 PM   #27
Pray
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Re: more transition for me

Hi Pam, Of coarse I know nothing. When I was on bed rest a long time ago. I used a rocking chair to rebuild my calf muscles and it sure helped a lot. I just happen to love to rock. I don't know if you have access one? Just a thought. You have been through so much already I wish I could help in some way. Gods blessings to you my little Sis, Nancy
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dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 10-15-2012, 04:55 PM   #28
Mtngrl
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Re: more transition for me

Pam,

I don't know what your financial situation is, but is there any way you or your family could pitch in for a consultation with a physical therapist? He or she could perhaps put you on an exercise plan that you can do in your room, perhaps with elastic bands or some kind of weight and pulley device. Then, finances permitting, maybe there could be follow-up every so often.

I can't imagine being told I have to have a bathroom schedule. That is outrageous. What did the nurse say when you asked him if he has to pee on schedule?

I like Nancy's rocking chair suggestion.

Hang in there.
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Amy
_____________________________
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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