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10-14-2012, 04:21 PM
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#21
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Senior Member
Join Date: Sep 2010
Location: Shelby, N.C.
Posts: 114
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Re: Update on Barb
Were not sure where to go from here the removal of fluid has made Barb more comfortable but she has started to run a slight fever again today. She had her third TDM=1 treatment Tuesday and we have a CT scan scheduled for the 26th. Its my understanding that cat scans arent recommended soon after a chemo treatment. So Im not sure what to do, is the fever a TDM-1 side effect, a pneumonia after effect, or more likely a sign of infection somewhere.Her skin mets are very ugly at this point, actually open sores. Could this cause the fever or if there are mets to the liver would that cause a fever. Shes never had a sign of activity in the liver before. I plan to get her in to see the doctor first thing tomorrow AM.
__________________
Diag. Aug. 2010
ER- PR- Her-2 +++ Stage IV
Mets to T 6th Vertabrae
Radiation to spine
10/23/10StartNavelbine
11/19/10 Port installed
11/22/10 Started 2nd cycle
1/10/11 Finished 2nd cycle
1/24/11 Herceptin Only
3/7/11 progression, start Taxol/Herceptin
4/18/11 Skin mets appear increase treatments to weekly
rash spreads to right breast
7/5/11 enroll in TDM-1 study
7/29/11 randomly assigned Tykerb drop out of trial and start Tykerb /Herceptin no Xeloda skin mets gone Tykerb working
1/31/12 Skin mets return add Xeloda
5/9/12 Stop Tykerb skin mets back
5/17/12 Return to Navelbine/Herceptin
6/26/12 start process for TDM-1 compassionate access
8/28/12 Start TDM-1
10/9/12 third TDM-1 no response yet
10/23/12 Start Haloven
1/17/12 Start Perjeta/ Herceptin/Taxotere
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10-14-2012, 04:38 PM
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#22
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: Update on Barb
Mike,
So sorry for all your troubles, and Barb's. I'm glad she's breathing more comfortably. I'd echo the thinking that skin mets that aren't spreading seem like a good sign.
I pray for healing, wholeness, joy and light for you and Barb.
__________________
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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10-14-2012, 07:42 PM
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#23
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Senior Member
Join Date: Nov 2010
Posts: 393
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Re: Update on Barb
fever is normal reaction to t dm-1, w/in 2-5 days after tx. after several txs, sometimes more , fever may go away, as body adjusts to the drug. we had to go to ER ( access rules ) if temp went over 100.5 Most often turned out to be usual t dm-1 reaction. one time fever went high 103 , stayed high, we didnt want to go to er on wkend, turned out to be sepsis, which is very serious. so now we tell everyone dont wait , follow the rules.
Or could be pneumonia coming back , can be hard to kick when overall strength is down. in my laymans opinion, going to your doc tom. is a must.
fever is not necessarily indication of liver mets , or any mets for that matter . the scans on the 26th will tell . they will be compared to last scans before t dm-1 . has your doc worked w/ t dm-1 before ? most t dm-1 docs would give it at least 3 doses and ct's before thinking about switching tx's. Hang in !
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10-14-2012, 07:53 PM
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#24
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Senior Member
Join Date: Nov 2010
Posts: 393
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Re: Update on Barb
What about tumor markers ( blood tests ) ? were they done before tdm-1 started ? done since ? they could give indication if t dm-1 is working internally, while waiting for ct pictures.
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10-15-2012, 04:30 AM
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#25
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Senior Member
Join Date: Sep 2010
Location: Shelby, N.C.
Posts: 114
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Re: Update on Barb
Phil
Yes blood work was done before treatment but there wasnt a scan done immediately before, there comparing to one done in May. Her Onco has felt that in her case scans arent needed as often. She hasnt had any surgery because he felt you remove to prevent spread. And she had already spread to her spine at diagnoses. He felt we could see the effectiveness of whichever treatment she was on by looking at her breasts. Scans were done before each change in treatment prior to TDM=1
__________________
Diag. Aug. 2010
ER- PR- Her-2 +++ Stage IV
Mets to T 6th Vertabrae
Radiation to spine
10/23/10StartNavelbine
11/19/10 Port installed
11/22/10 Started 2nd cycle
1/10/11 Finished 2nd cycle
1/24/11 Herceptin Only
3/7/11 progression, start Taxol/Herceptin
4/18/11 Skin mets appear increase treatments to weekly
rash spreads to right breast
7/5/11 enroll in TDM-1 study
7/29/11 randomly assigned Tykerb drop out of trial and start Tykerb /Herceptin no Xeloda skin mets gone Tykerb working
1/31/12 Skin mets return add Xeloda
5/9/12 Stop Tykerb skin mets back
5/17/12 Return to Navelbine/Herceptin
6/26/12 start process for TDM-1 compassionate access
8/28/12 Start TDM-1
10/9/12 third TDM-1 no response yet
10/23/12 Start Haloven
1/17/12 Start Perjeta/ Herceptin/Taxotere
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10-15-2012, 07:20 AM
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#26
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Senior Member
Join Date: Nov 2010
Posts: 393
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Re: Update on Barb
Surgery is more and more ' old school " in tx. L. had just a lumpectomy. we chafe against the rules in trials , and they often are not flexible enough, but there is benefit to rules. When admitted to exp access L. had ct's done. just before first dose. then ct's were done by rule after dose 3. and every 3 months after, for over a year . this yr ( second yr anniv. of t dm-1 is coming end of Nov. ) we scaled back to every 4 months.
tumor markers done just before first dose, then again, I believe after first dose , or second, before ct's.
you are fighting a complicated battle, w/ pneumonia, skin mets, praying for t dm-1's effectiveness, it does take awhile. praying for good results on 10/26 !
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10-15-2012, 01:40 PM
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#27
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Senior Member
Join Date: Apr 2011
Posts: 403
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Re: Update on Barb
Hi Mike ! I found an old post on skin mets. Hopefully the scan will show good results ! ( My skin mets never showed up on the PET scan. )
http://her2support.org/vbulletin/showthread.php?t=46094
__________________
1/11 age 36 DX
ER/PR-, Her2 +
TCH*6, Herceptin
BMX with immediate recontruction 5/2011 Lattismus Flap- Dx stage 3c 10/23 nodes
9/11 Radiation
3/12 Local recurrence to skin stage IV
Whole body scan CLEAR
4/12 Tykerb & Xeolda Skin mets slowly regressing
8/12 PET & Brain CT Clear
5/13 Skin mets progressing
6/13 PET scan chestwall recurrence in contralateral anxillary,internal mammary and ipsilateral subpectoral nodes
6/13 kadcyla
10/13 whole body scan -clear NED. previously resolved skin rash gone but 3 new lesions. Biopsy confirmed for skin recurrence
11/13 to 02/14 tykerb & herceptin
02/14 add abraxane/gemzar, 2 weeks on 1 week off at reduced dose
05/14 whole body PET clear/ brain CT clear but skin mets are getting worse, ready for new chemo
05/14 navelbine perjeta herceptin
07/14 skin mets progressing red rash worse
08/14 wide local excision with diep flap to close wound. Final path shows 2 positive margins showing inflammatory carcinoma Going back to surgery in 2 weeks
09/01/14 resection- clear margins
3 weeks after 2nd surgery, a new nodular rash found near drain incision with 2 small red spots behind the chest wall biopsy on 10/1. Positive for breast cancer
Radiation 11/2014 with xeloda then weekly cisplatin
11/14 brain MRI clean
12/14 finished 33 radiations burnt and very painful. Bedridden for 1 week
12/14 t current Herceptin and perjeta only
02/15 rash on upper back right side skin mets radiation planned
02/15 staring electron radiation *35
Stopped at 30 due to severe skin burn, resumed 10 days later
05/15 red patches appeared in between previously radiated area, skin mets. Ct and brain Mri clear. Simulation planned, radiation to start after trip to Alaska.
05/24 new spot identified in scar line on previously radiated reconstructed breast- electron on both side chest wall area and scar line
07/15 multiple skin and lung recurrence begin halaven
11/15 cough much better but very tired on halaven and starting to see some new red skin blotches-suspicious
11/15 heading to China for immune therapy
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10-18-2012, 01:03 PM
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#28
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Senior Member
Join Date: Sep 2010
Location: Shelby, N.C.
Posts: 114
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Re: Update on Barb
Just returned from Barbs Dr. hes taking her off TDM-1 and starting Haloven next Tuesday. She has progressed considerably while on TDM-1 theres a mass at the base of her neck that has done nothing but grow so bye bye TDM-1. She also started radiation today on the skin mets and the mass on her neck. Her neck has really been bothering her so I pray Haloven does the trick. I wish I understood why we have to go through what weve been through.We fought long and hard for the TDM-1 twice now, once to be randomized to Tykerd on Emelia and now we get compassionate access and it does nothing. I think her doctor is as upset about this as we are he really seems to care for Barb and that makes us feel like we are where God would have us to be. Hes sure not wasting any time we were scheduled for Cat scans on the 26th and treatmant on the 30th. He feels like theres no point in a scan when you can obviously see progression and he marched us straight across the hall to the radiation dept and told them to work her in today for treatment. Just wanted to let you all know where were at in this crazy journey.
__________________
Diag. Aug. 2010
ER- PR- Her-2 +++ Stage IV
Mets to T 6th Vertabrae
Radiation to spine
10/23/10StartNavelbine
11/19/10 Port installed
11/22/10 Started 2nd cycle
1/10/11 Finished 2nd cycle
1/24/11 Herceptin Only
3/7/11 progression, start Taxol/Herceptin
4/18/11 Skin mets appear increase treatments to weekly
rash spreads to right breast
7/5/11 enroll in TDM-1 study
7/29/11 randomly assigned Tykerb drop out of trial and start Tykerb /Herceptin no Xeloda skin mets gone Tykerb working
1/31/12 Skin mets return add Xeloda
5/9/12 Stop Tykerb skin mets back
5/17/12 Return to Navelbine/Herceptin
6/26/12 start process for TDM-1 compassionate access
8/28/12 Start TDM-1
10/9/12 third TDM-1 no response yet
10/23/12 Start Haloven
1/17/12 Start Perjeta/ Herceptin/Taxotere
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10-18-2012, 05:21 PM
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#29
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Senior Member
Join Date: Oct 2008
Location: Detroit, MI
Posts: 205
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Re: Update on Barb
Praying hard for Barb, Mike. This radiation/Haloven combo is the winner. I look forward to reading your posts about her improvements.
You are both warriors and I am lifting you both up in prayer daily.
Maureen
__________________
Maureen
My loves
IDC & DCIS, HER2+++ Diagnosis: October 1, 2008 - Tumor: 6.8 centimeters, never showed on mammograms
- ER-/PR-
- November 2008: Sentinal Lymph node surgery. 6 out of 9 lymph nodes with cancer
- Stage IIIc
- Lapatinib Clinical Trial start: November, 2008
- Surgery: May 5, 2009
- Started Herceptin: May 19, 2009
- Started Radiation (33 rounds): June 10, 2009
- September 2009: Moved to Michigan to be closer to family
- 12/09 - still on Herceptin until May 2010
- August 2010: Port out, port out, port out port out port port port out port ooooout...da da da dant! (to the music of the Pink Panther)
Blog: http://moonsfamily.blogspot.com
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10-18-2012, 08:07 PM
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#30
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Senior Member
Join Date: Apr 2009
Location: La Quinta, Ca
Posts: 253
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Re: Update on Barb
I am so so sad to hear this update. You fought so hard to get T-DM1 and it is so difficult for me to understand why it didn't work. Barb has not received much chemo in her journey compared to so many others so it can't be that. Just as an FYI, my recurrences have both been in the neck nodes and a mass in the right supraclavical area. If I didn't get T-DM1 (which he recommended as first choice), Dr Slamon recommended TCH for me. I didn't want TCH because it is harsh but it may end up that way if T-DM1 doesn't work for me either. I will have to decide if I will do that given my weakened state of health.
I pray halogen works for Barb. You two deserve a break.
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10-19-2012, 05:13 AM
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#31
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: Update on Barb
Mike,
I'm sorry for these setbacks. It's very disappointing. We all have such high hopes for TDM-1.
It's wonderful that Barb's oncologist is so proactive. I pray that the radiation and drug combination will get her cancer under control.
__________________
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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10-19-2012, 08:01 AM
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#32
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Re: Update on Barb
Mike
I am sorry to hear of this let down. Perhaps your new path will be the right one for Barb. It's awesome how you are such a champ for her. There are many other options, don't feel discouraged. I will keep you in my best thoughts.
Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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10-19-2012, 10:42 AM
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#33
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Senior Member
Join Date: Apr 2011
Posts: 44
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Re: Update on Barb
I'm sorry to hear about Barb's progression with TDM-1. I've been following your updates with hope and this is disappointing for me too 
I was wondering if you've explored Perjeta/Herceptin and Taxol combo. There's this thread on BCO where the ladies have had good results with this. Hopefully this will reverse the Herceptin resistance. Not sure if I'm breaking any rules by posting the thread here, but I'll just post it for your ease of reference.
http://community.breastcancer.org/forum/8/topic/790575
Of course, I've my fingers crossed that Halaven does a good job and you won't have to explore the Perjeta combo.. |
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10-19-2012, 10:42 AM
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#34
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Senior Member
Join Date: Sep 2010
Location: Shelby, N.C.
Posts: 114
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Re: Update on Barb
Barb was in so much pain yesterday that they werent able to effectively map out the entire radiation treatment area. We left their office around 2:00 right after the CT Scan and we were told to return around 4:30 to begin the process of maping and radiation. When we returned as instucted they werent done with the calculations so we waited a while maybe 1/2 hour. When they put her on the table and started positoning her she wasnt able to comfortably cooperate. They tried several times but gave up at 5:45 and suggested retuning at 12;; today but this time make sure she was heavily medicated, her onco prescribed some pain pills yesterday. I find it amazing how God works when I awoke this morning its as if he spoke to me in a dream and said why are you putting her through so much pain trying to treat everything at once. Concentrate on the mass in her shoulder and we will worry about the mets down the road. So I called the doctors office and suggested just that. When we met the doctor at 12:00 he came into the room and told my wife that he thought that my idea was a good one so they set it up to map and treat the one area and she did well enough to accomplish that. Hopefully now the treatments will reduce the pressure and allow future treatments of the mets.
__________________
Diag. Aug. 2010
ER- PR- Her-2 +++ Stage IV
Mets to T 6th Vertabrae
Radiation to spine
10/23/10StartNavelbine
11/19/10 Port installed
11/22/10 Started 2nd cycle
1/10/11 Finished 2nd cycle
1/24/11 Herceptin Only
3/7/11 progression, start Taxol/Herceptin
4/18/11 Skin mets appear increase treatments to weekly
rash spreads to right breast
7/5/11 enroll in TDM-1 study
7/29/11 randomly assigned Tykerb drop out of trial and start Tykerb /Herceptin no Xeloda skin mets gone Tykerb working
1/31/12 Skin mets return add Xeloda
5/9/12 Stop Tykerb skin mets back
5/17/12 Return to Navelbine/Herceptin
6/26/12 start process for TDM-1 compassionate access
8/28/12 Start TDM-1
10/9/12 third TDM-1 no response yet
10/23/12 Start Haloven
1/17/12 Start Perjeta/ Herceptin/Taxotere
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10-19-2012, 11:18 AM
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#35
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Senior Member
Join Date: Apr 2009
Location: La Quinta, Ca
Posts: 253
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Re: Update on Barb
You are a wise man. My current reoccurrence was finally detected on Pet when I started to have tingling in my fingers which proceeded with severe pain up my right arm and then my rt shoulder and back. I lived in bed.On an ice pack and pain meds for weeks before the scan revealed a 3 cm tumor in my rt supraclavical which was pressing on the branchial plexus. I couldn't eat and lost a lot of weight. i got a new appreciation for the pain so
many patients try to live with. I begged for radiation to start ASAP. I had 19 rads. The pain discomfort I have now is only in my rt hand. They tell me it will take a long time for these small nerves to regenerate and they may never regenerate. After radiation they made me wait at least 6 wks for chemo which was fine because I was busy trying to get T-DM1. Barb has to get the pain under control to fight onward with chemo.
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10-19-2012, 12:33 PM
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#36
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Senior Member
Join Date: Sep 2010
Location: Shelby, N.C.
Posts: 114
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Re: Update on Barb
Her Onco has a Haloven treatment scheduled for Tuesday the 23rd provided ins approves. Is it a bad idea to do this so soon after and during radiation . She will have radiation treatments Monday thru Friday for the next couple weeks at least. Originally we were told Rads for 5 weeks but that was when they were planning on doing the mets and the neck. Our only experience with radiation was back in Aug of 2010 when they zapped the met to her spine when she was diagnosed. Her Onco started chemo the next week so I have no doubt hes aggressive which I guess is a good thing.
__________________
Diag. Aug. 2010
ER- PR- Her-2 +++ Stage IV
Mets to T 6th Vertabrae
Radiation to spine
10/23/10StartNavelbine
11/19/10 Port installed
11/22/10 Started 2nd cycle
1/10/11 Finished 2nd cycle
1/24/11 Herceptin Only
3/7/11 progression, start Taxol/Herceptin
4/18/11 Skin mets appear increase treatments to weekly
rash spreads to right breast
7/5/11 enroll in TDM-1 study
7/29/11 randomly assigned Tykerb drop out of trial and start Tykerb /Herceptin no Xeloda skin mets gone Tykerb working
1/31/12 Skin mets return add Xeloda
5/9/12 Stop Tykerb skin mets back
5/17/12 Return to Navelbine/Herceptin
6/26/12 start process for TDM-1 compassionate access
8/28/12 Start TDM-1
10/9/12 third TDM-1 no response yet
10/23/12 Start Haloven
1/17/12 Start Perjeta/ Herceptin/Taxotere
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10-19-2012, 12:57 PM
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#37
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Senior Member
Join Date: Nov 2010
Posts: 393
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Re: Update on Barb
Got home late from the hospital last night and saw your post, going after that neck area makes sense. Radiation definitely works on certain areas , often never comes back in those areas. Halaven works well for many, and is a recent drug., appr. only in 2010. We are Praying Hard for you and Barb, Praying for good results from these aggressive tx's. T DM-1 should be available , if needed , as an extra kick, by next Feb. or sooner . Merciful God , Healing God, Be With Mike , Barb, and Family. Psalm 57 : 1 , " Have Mercy on Me O God...I will take Refuge In The Shadow Of Your Wings until the disaster has Passed ". And Lorraine always adds " No Peeking ! "
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10-21-2012, 03:01 AM
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#38
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: Update on Barb
Hoping and praying the txs control Barb's pain. Please know that your family is in my prayers. peace
__________________
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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10-21-2012, 04:58 AM
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#39
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Senior Member
Join Date: Jul 2011
Posts: 954
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Re: Update on Barb
Praying for and thinking of you guys.
Paula
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10-21-2012, 05:39 AM
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#40
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: Update on Barb
Mike,
Stay strong. I believe you are always exactly where God wants you...if you're there because you love, and trust. I think you and Barb have those two things covered!!
Prayers and good wishes going out to you both...I'll be taking you with me, in my heart, to church this morning.
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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