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Old 12-30-2009, 11:16 PM   #21
vlcarr
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Re: I'm so tired of this! (Venting again!)

One thing that worked for me when I was immobile was a cooler by my chair. My husband would fix a sandwich, salad, fruit, etc and we would put it in the cooler by my chair since I could not get to the kitchen to make something to eat. He would put cereal in a tupperware bowl and put some milk in the cooler. It was a life saver--no hot food but it got me through the day. Just thought I would share since you really need to keep your strength up.
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Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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Old 12-31-2009, 12:13 AM   #22
Lani
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Re: I'm so tired of this! (Venting again!)

sometimes during the act of performing orthopaedic surgery a bone can be weakened in ways not expected preoperatively (cracks can develop, two week points can be joined in one combined fracture, bones can just break into many pieces--"comminuted". Sometimes without any complications at surgery the bone fracture is found to be much more involved and complicated at surgery, than appeared on preoperative imaging studies(especially if they were MRIs rather than CTs)

This can cause a change in instructions given post-operatively ie, need not to put full weight on limb, need to limit certain motions

Can you ask to get a copy of the operative report to see if it intimates that anything needed to be done that was not expected preoperatively?

It could be that is the reasoning for limiting your walking and physical therapy.

If noone will give you a good explanation as to why your activities are much more limited than what you had been told preoperatively, perhaps getting a copy of the operative report and taking it for a second opinion to Dr. Jeffrey Eckhardt @ UCLA (their orthopaedic tumor specialist) would be in order,

In order for you to go along with the program to get the best report, it is imperative that you UNDERSTAND THE WHYs and WHEREFORES of their instructions/limitations placed for your recovery

Just my two cents
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Old 01-01-2010, 08:20 PM   #23
WolverineFan
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Re: I'm so tired of this! (Venting again!)

Chelee,

I feel so badly for you and don't even know what to say. Please hang in there, and know that you have a loving, supportive family here for you ALWAYS!!

Take care,

Hayley
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Hayley
Oklahoma

3/35/2009 - Diagnosed, age 39
5/7/09 - Mastectomy and reconstruction started. Two tumors found. Tumors were side by side. DCIS tumor was 2.8 cm, ER-, PR-, grade 2. Invasive tumor was 1.1 cm, poorly differentiated, grade 3, ER+90%, PR+95%, HER2+3. Thankfully, no node involvement.
5/29/09 - Second surgery resulting from difficulty healing from mastectomy.
6/2/09 - Began Herceptin treatments
6/23/09 - Began Taxotere and Carboplatin treatments along with Herception every 3 weeks.
10/06/09 - Completed Taxotere and Carboplatin - Yeah!!!
10/27/2009 - Herceptin maintenance and began Femara
12/10/2009 - 2nd stage reconstruction surgery
2/2010 - Body rejected saline implant
3/18/2010 - Second stage reconstruction using silicone implant
5/4/10 - Completed Herceptin - YEE-HAA!
May '10 - Body rejects silicone implant...taking a break.
11/29/10 - Hysterectomy
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Old 01-02-2010, 06:41 PM   #24
Cal-Gal
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Posts: 309
Re: I'm so tired of this! (Venting again!)

Chelee-

I am so sorry that you are going through all of this---
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DX: 11/08 Age: 53
Surgery: 1/09
Bilat Mastectomy, no reconstruction
ILC-4 tumors-1.7 cm,1.5 cm (2).8 cm
DCIS-11 cm
All tumors Grade 3
All tumors ER-0%/PR-0%
All tumors HER2+
IHC-all tumors Overexpression/borderline
FISH 2 tumors Her2-Negative
FISH 2 tumors Her2+ Equivocal
Stage I, 0/1 nodes
LVI-Indeterminate(treated as positive)
SPR Score 8/9
Ki-67 20%
BRCA genetic test 1/2=negative
Chemo: 6 rounds TAC Feb-June 2009 w/Neulasta
Herceptin: 6/12/09-6/4/10 52weeks
HNPCC genetic test: negative
Port Placement-9/23/09 Port Removal 6/25/10
Echo's every 3 months-All normal
2/09 Staging PET/CT showed 0.2 micronodule upper R lobe-lung-Onc does not think this is mets--
6/5/09 AND 10/09 CT scan 0.2 micronodule unchanged
1/10-PET/CT-uptake in nasopharynx-
1/10-MRI All normal
6/10-Bone Scan-clear
12/10-PET/CT-All Clear-NED
12/11-PET-All Clear-NED

12/12-PET-All Clear-NED
12/13-CT w/contrast Head, Torso-All Clear
12/14-CT w/contrast Head-All Clear
2/15-Core needle biopsy-R scar line

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Old 01-09-2010, 02:08 AM   #25
Chelee
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Re: I'm so tired of this! (Venting again!)

Vicky, Some how I missed the last few replies here. But that was a great idea about filling a cooler with food. What a great hubby you have! He sounds like a real keeper! My husband just came home from work those nights and told me about how they had prime rib, & baked potato one night. Ribs another...& all kinds of good food. (That was nice of him to share that with me.)

Small update though. Just today I managed to walk very short distances without my walker or cane in the house. I have a long ways to go still...but I think I will be rid of this walker soon. (I hope so anyway!) The pain has subsided some too. It's been 45 days and it seems like it's been 4 months. But I'm finally making some progress. I see the ortho for a follow-up this Tues.

Lani, I just got the surgical report last wk. I requested it along with all my x-rays, bone scans and anything else he had.
The surgical report makes no mention of any complications at all. In fact he told me personally I lost alot of blood...so I assumed it would of been mentioned some where in the report? It was only "noted" at the top in fine print by it's self that blood loss was 851 ml. My operative report said very little which surprised me since my surgery took much longer then he planned. In fact both surgical reports from my mastectomies were more detailed. Makes me wonder how much he left out? Guess I'll never know? However now that I've changed my insurance and have a PPO I am seriously thinking of running out to discuss my femur with Dr. Jeffrey Eckhardt that you recommended. I'd love his opinion & see what he thinks about all this? Since we changed our insurance we no longer need authorization to see someone else. Thanks Lani.

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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