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11-08-2009, 07:53 PM
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#21
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Trt stopped, & now a wheelchair & walker...
It seems I don't have much choice other then to have the femur fixed first. I can't do anything since I can't put any weight on my rt hip. I am so tired of sitting here! This toe touching crap isn't easy...I have to put too much body weight on upper arms & it's painful. In fact when Lani mentioned crutches I decided to dig out an old pair we have. It's alot better then the walker & I can move thru the house quicker!
So it looks like I'll have to do surgery first, but I'd be lying if I didn't say it is scarying the heck out of me to wait to start trt. The Ortho said I would be at the hospital for 3 days & start walking immediatly the following day. Then I would come home & have another 14 days to let it heal & then start chemo. (Barring everything goes as planned with the surgery.)
It was obvious the Ortho was not happy with my onc telling me my hip was fine. His tone of voice went up and let me know he totally disagreed with my onc! So looks like I have to get this fixed because I can't do anything in this condition. I will be continuing Herceptin & will find out this coming wk if TMers are still dropping with herceptin alone? I'm uncertain about the Zometa? I've read that you need a washout period if your having surgery...but yet this Ortho said it's no problem?
Chrisy I sure hope your right about me looking back on this in six months. With so much recurrence in my body and no chemo has me so worried. Right axilla & liver area has pain that was not there. Then the newly found borderline inguinal nodes worries me. Just so much time keeps going by with no trt. I might try to call Dr. Slamon's office again but I only paid for a consult that one time...don't want them getting upset with me? I've called there prior to this a few times. Although his NP has been so nice! I need to do something...I just don't want this spreading anymore then it has. I still might look into the Tykerb...although I'm not sure how diarrhea works when you can't move very fast after a rod is placed down femur. This seems like a good argument for getting a ok for herceptin/Tykerb.
Chelee
__________________
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.
Last edited by Chelee; 11-08-2009 at 07:58 PM..
Reason: Corrected error.
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11-08-2009, 08:00 PM
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#22
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: Trt stopped, & now a wheelchair & walker...
Chelee,
Is it possible to check with Dr. Slamon about what he would do?
I'm praying for you.
Hugs,
Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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11-08-2009, 09:29 PM
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#23
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Senior Member
Join Date: Jun 2009
Posts: 343
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Re: Trt stopped, & now a wheelchair & walker...
Hey Chelee,
Just wanted to let you know that when I did Tykerb/Herceptin I rarely had diarrhea and got no rash at all.
On the other hand, I seem to be having a rougher time than some on TCH.
It just goes to show we all react differently--I've read some posts where women have to stop Tykerb due to the side effects. The only issues I had with Tykerb was some fatigue and mouth sores which fall more into the uncommon side effects......
I was concerned about the impact all these drugs, including chemo, would have on my bones fusing properly in my neck since I had surgery in April of this year. I have metal and bone in my neck for fusion at C5/6 and C6/7.
Just wanted to share even though the procedures are probably different.
My neruosurgeon told me not to worry about it, he thought it would be fine.
One thing they did give me was a bone growth stimulator that I wore 4 hours every day for the first 6 weeks. I'm not sure if you will be dealing with bone fusion but wanted to pass that along. I would think it would work for any bone, not just the neck.
If this is something your doctor feels would help, and you can't get your insurance to pay for it, I would be more than happy to loan mine to you. They cost over $5,000 and my insurance paid for it.
Take care of yourself 
__________________
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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11-08-2009, 11:17 PM
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#24
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Senior Member
Join Date: Mar 2006
Posts: 4,778
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Re: Trt stopped, & now a wheelchair & walker...
As I understand it, Bone growth stimulators have to be programmed for the shape of the bone and the location where they are used ie, neck vs wrist vs ankle . The electromagnetic field
generated is customized based on an xray of the area.
I would suppose the device could be reprogrammed--just don't know who you would get to do that. The device company wants to make more money, so I don't think they encourage reuse.
I also think having a metastasis in the area may turn out to be a contraindication to using a bone growth stimulator** (company afraid if the cancer got worse the patient would blame the device) and it is possible that having a big metal rod in the area might also be a contraindication. I remain ignorant of whether the weak area is in the shaft of the femur, the subtrochanteric area or???
**vlcarr--was your surgery done for arthritis/disc disease/stenosis or for mets?
Hope some of this helpful...
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11-09-2009, 12:06 AM
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#25
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: Trt stopped, & now a wheelchair & walker...
Lani, you are amazing!
__________________
Bonnie
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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11-09-2009, 01:20 AM
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#26
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Trt stopped, & now a wheelchair & walker...
Vicky, That's nice to know everyone doesn't necessarily get that side affect. That would be misrable to deal with while recovering from hip surgery. I'm going to discuss this with my onc, and see if my insurance company would OK this combo under my unusual circumstances. I'd feel better if I could add something to the Herceptin. That is sweet of you to offer your bone stimulator...but after reading Lani's post I don't think it's a good idea. She made some very valid points I would of never thought about. But I still appreciate the offer.
Lani if it helps my MRI report says there is a large heterogenous mass in the intertrochanteric region of the proximal rt femur measuring 6.4 x 4.7 cm. The surgery the Ortho explained to me, sounds exactly as you outlined in your other post to me. You have it correct. Thanks to all of you for your help...this has been stressful.
Chelee
__________________
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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11-09-2009, 05:54 AM
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#27
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Re: Trt stopped, & now a wheelchair & walker...
Chelee
I have strted the Tykerb, Herceptin routine...(see my post) and have started with 3 tabs a day, then up to 4, gradually upping it to 5, so far, no problems,,,hoping this would be an answer...i do know you cant get the T-DM1 if there is any surgery planned....it was in big bold letters on all the trials. Hope the hip gets fixed, and the Tykerb/herceptin keeps things stable until you can get the chemo...you might be surprised!
Sending lots of prayers and hugs.
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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11-09-2009, 06:36 AM
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#28
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Senior Member
Join Date: Jul 2009
Location: Sardegna, Italy
Posts: 362
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Re: Trt stopped, & now a wheelchair & walker...
Wow- Sorry, I don't have any great words of wisdom -just wanted to weigh in and say I'm sending you good energy and thinking of you -
Hope you can get the surgery done and then back on your treatment program quickly.
Remember your mind is very powerful ---
If you have time - get a few books to read, while you will be in surgery and recooperating - (you can order them on line at amazon.com) my recommendations are:
A Cancer Battle Plan Sourcebook - by David Frahm
Cancer - 50 essential things to do - by Greg Anderson
Crazy Sexy Cancer Survivor - by Kris Carr - (will make you laugh - its hip and sassy!)
All three of these talk a lot about the power of our thoughts and how we need to control them to not be toxic and to talk to the cancer and tell it that it isn't that powerful --- (sometimes we give it too much power)
But might help you not worry about the time you are not "on" the chemo.
:-) Hope it helps!
Live long and STRONG!
Karen
__________________
Karen Wheelhouse Age: 46
Facebook id: Karen Wheel
2-09 – Age 44 -Biopsy-Cancer
3-09 – Right Quadrantectomy. Clear margins.
3 lymph nodes taken - all clear
Tumor results: Stage 1, 1.5 cm, Her2 +++
Est positive 80% - Prog 10% - Ki67 postive 30%
4-09 – Became a vegan! pH balance of body - cancer can't grow in neutral pH!
4-09 Started Herceptin & Chemo (9 weeks of Navelbine *)
* FYI - when coupled with Herceptin has the same results as more toxic chemo. No brainer!
8-09 - 30 RADS
9-09 - Said NO to hormone therapy
4-10 Finished Herceptin!!!!
7-10 PET Scan & other exams .... All clear! YIPPEE!!!!
11-10 Breast, organ Ultrasounds and lung x-rays all clear no changes ... NED!
2-25-2011 --- 2 years from surgery and NED!!!!!!
7-2011 Clear bone scan and full body and head MRI! NED! NED! NED! ;-)[/SIZE]
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11-09-2009, 07:23 AM
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#29
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Senior Member
Join Date: Nov 2007
Location: New Jersey
Posts: 889
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Re: Trt stopped, & now a wheelchair & walker...
Chelee I have no profound words of advice, but just want to let you know that you are in my thoughts and prayers.
__________________
dx aug 03 invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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11-09-2009, 07:23 PM
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#30
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Senior Member
Join Date: Jun 2009
Posts: 343
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Re: Trt stopped, & now a wheelchair & walker...
Lani knows a lot more than I do about the bone growth stimulator. I just wanted to throw it out there in case it was something you needed. It makes perfect sense about the programming issue.
My surgery was for severe stenosis which is usually seen in elderly patients. This was my 2nd neck surgery (first in 99) and goes back to a car accident I had in my 20s.
Chelee, wishing you success and the strength you need to deal with this! Hang in there.
__________________
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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