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Old 07-25-2013, 12:37 PM   #1
KDR
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Nervous beyond

After the huge mistake made on me in the OR, my confidence level is at ZERO when it comes to medical care. I am suffering the physical aspects of the disaster as well as the psychological. I am NERVOUS NERVOUS NERVOUS about the first infusion of Navelbine tomorrow. I now know how easy it is to die, even with several doctors standing over your body. I am trying to come to a sense of peace about it but am getting very uptight about tomorrow's infusion. PTSD has returned but I have not, not quite yet.
Tell me it's all good.
THANK YOU
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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Old 07-25-2013, 12:50 PM   #2
ammebarb
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Re: Nervous beyond

Oh, how I wish that my words could take away all your anxiety.....Gentle hugs and prayers coming your way.

Barb A.
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Old 07-25-2013, 12:56 PM   #3
'lizbeth
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Re: Nervous beyond

KDR,

That is so devastating to lose faith in those who are caring for you.

Perhaps if you find your voice and inform the staff tomorrow that you had a bad experience and are very concerned about another mishap. Ask that they check and double check everything to make you feel safer. Please!

I pray that everything goes more smoothly, so that it helps to restore your faith in your medical team. And I pray that the "navy beans" kicks any cancer cell's patooties so you can be NED!

Wishing you good fortune & good health!
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes

Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"

Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla

Reconstruction: TRAM flap, partial loss, Revision

The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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Old 07-25-2013, 01:12 PM   #4
ElaineM
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Wink Re: Nervous beyond

Hugs !!
I hope the Navelbine kicks the cancer's butt !!
I know the feeling of loosing trust in one's doctors.
My doctor sent me home from his office with full blown
pnemonia, trouble breathing and no antibiotics last Friday. I called 911 and ended up in the hospital for 4 days. I am still taking the antibiotics. My doctor is going to get a big piece of my mind when I see him.
Tell the staff who will be taking care of you to double check everything before they start your therapy.
__________________
Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
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Old 07-25-2013, 02:45 PM   #5
karen z
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Re: Nervous beyond

When I felt nervous I asked the chemo folks to show me the labels, the dosages and to double -check ALL. They NEVER had a problem with this. If they do.............complain to the head nurse and your doctor.
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Old 07-25-2013, 02:47 PM   #6
NEDenise
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Re: Nervous beyond

Karen,
I agree with the idea of letting the team know about your harrowing experience and requesting/demanding a little extra TLC.
Praying for peace, and a return to health for you!
Denise

Elaine!
My goodness! So glad you're on the mend, but sheesh! what a scary experience!
Sending love and light to you too!
Denise
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Old 07-25-2013, 04:36 PM   #7
KDR
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Re: Nervous beyond

Oh, my chemo nurses are the BEST! BEST BEST BEST! They are the creme de la creme. The incident didn't happen anywhere near them. They are my peace and I love them. Fortunately or unfortunately, I have been at the center so long, they are like my extended family. They KNOW me. This is a separate facility from where my death nearly occurred. (Or maybe it did, still trying to figure that one out because my husband was told that I stopped breathing). That was at the main hospital, which is the scariest place on Earth to me. Got to get over it. I guess if I didn't have so many healing wounds and punctures and internal pain, it might be a little easier. But since I feel like I was cut in half by a train...it's hindering my good space.

It's how my body is going to react! I have been so weakened (if I had to rate, probably at 55% full strength right now), and white coats are not what I want to be around at all. I am still in shock. And to boot, someone coded (that's right, someone lost their heartbeat) in her treatment suite about two months ago. Chemo nurses descended on her like no tomorrow...she turned out o.k. but it affected us all!

So, Ativan it is. I'll see how much I can take, I'll push the limits. To the top. Maximum allowable dosage. This is PTSD, that's what it is. This is not Karen. But just like the World Trade Center, no one could tell me it wasn't real, it wasn't big. Time is what helps. And after 10 years, I just got to the point where I could drive myself to the center and not be afraid of high-rises. All that progress is hanging on the cliff, friends.

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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Old 07-25-2013, 04:56 PM   #8
tricia keegan
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Re: Nervous beyond

Sending good wishes karen and agree all chemo nurse's are the best!!!
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 07-25-2013, 05:19 PM   #9
CarolineC
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Re: Nervous beyond

Wow, you have been through SO MUCH-you WILL find Karen again. Fortunately you can trust your chemo team. Maybe they can slow the infusion since you are still healing.

I have a very hard time trusting my local MO. Three years ago, when it came time to possibly have rads he said he didn't think I would need them, so I asked to be referred to a larger centre where the RO recommended I have them. Two years ago when I was having issues (that's what I call them now) and ALOT of pain he wouldn't order a bonescan. I went to my gp who ordered one. (she had been telling me I was fine when I told her something wasn't right for eight months) When I had the scan a week later I had a 3cm lesion through the sternum to the tissue behind where a shadow was noticed, and THEN people listened. I have major PTSD and trust issues because of those and other incidents with other doctors. It takes alot for me to advocate for myself and many times I will go to an appointment and think "which wall shall I bang my head against today" because I'm still having great debates with my local MO.

Your chemo facility at least is separate from the hospital and your nurses are like your family-a real comfort. You are healing and all WILL be good tomorrow.
__________________
Dx Age 47 July/09 Stage 2B/3
Left Mast. Aug 09- 1 of 3 positive nodes in axillary dissection (yes only 3)
ER+ 90%, PR+ 20%, HER2+++
4 x AC, 4 x Paclitaxol and H (Neupogen for 7 cycles), Herceptin complete Nov 10
Mar–Apr 2010 25 Rads
Apr 10-Oct 11- Tamoxifen
Oct 11 – 3 cm met to sternum
Oct 11-Letrozole for 3 mths, start Clasteon-bone remodeller
Nov-Dec 11 - Happy 50th Birthday -20 rads to sternum
Jan-April 2012 Taxotere/Herceptin-6 cycles (Neupogen for 5)
Herceptin every 3 weeks-Letrozole added Nov 2012
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Old 07-25-2013, 05:34 PM   #10
linn65
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Re: Nervous beyond

Speechless in Indiana with everything you have been through! I hope you are with someone tomorrow that loves you and that can be your support when it's hard supporting yourself. Let them be strong for you and believe with them that you can get thru it.

Cry, breathe, make inappropriate jokes and lastly take that Ativan when your feet hit the floor in the morning! #yougotthis.
__________________
myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant

9/2012 Pre-adjunctive TCH chemo.

12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.

12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+

2/27/13 6 weeks of IMRT radiation finished

2/2013 Started on Tamoxifan 5 years.

8/2013 will take last Herceptin, 17 treatments total every 3 weeks.

BRCA1 & BRAC2 - Negative

August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.

3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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Old 07-25-2013, 11:42 PM   #11
Pray
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Re: Nervous beyond

Your in my prayers. Gods blessings to you.
__________________
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 07-26-2013, 07:21 AM   #12
JillaryJill
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Re: Nervous beyond

Thinking about you today...wishing you strength and great results as you go through this new round of treatment.
__________________
DX November 2010
Brain MRI, CT of lung, liver, bone, all clear
Double Mastectomy w/expanders December 1, 2010
ER- PR- Her2+++, grade 3, 12 positive nodes out of 15
Stage IIIc
Started TCH/Chemo December 31, 2010
6 rounds TCH
Herceptin every 3 weeks for a year
33 rounds of TomoTube radiation, to chest wall, neck, skin and lymph area
September, 2011, MRI to lower spine, hips, DX bulging disk, L4 & L5, pain not from cancer
Expanders removed, implants in Dec 1, 2011
Finished Herceptin, December 21, 2011
August 2012, CT of chest and abdomen, all ok
Enrolled in MC1136 Phase I Peptide Vaccine Trial at Mayo Clinic, Rochester, Minnesota
March 2013, First Vaccine
April 2013, 2nd Vaccine
May 2013, 3rd Vaccine
June 2013, 4th Vaccine
July 2013, 5th Vaccine
August 2013, 6th Vaccine Done!
September 2013, Mayo visit, Echo results 68, vaccine did not effect my heart! Blood work normal.
January 31, 2013, Mayo visit, Echo normal
February 23, 2014, Numb lips on right side, Brain MRI, normal!
June, 2015, Finished the trial at Mayo Clinic. Feels good!
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Old 07-26-2013, 07:41 AM   #13
sarah
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Re: Nervous beyond

Hello Karen,
I hope everything went well today and you are feeling less anxious.
You've been through a lot and survived, you're brave and have a wonderful attitude so I'm sure you're anxiety will pass.
good luck.
hugs and love
sarah
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Old 07-26-2013, 02:51 PM   #14
caya
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Re: Nervous beyond

From one Caryn to another Karen -

I hope it all went well today, and that Ativan did its job.

all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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Old 07-26-2013, 03:31 PM   #15
BonnieR
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Re: Nervous beyond

I share your distrust instinct! Glad to see you will have Ativan on board as needed
Keep the faith. What else can we do?
__________________
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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Old 07-26-2013, 07:05 PM   #16
KDR
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Re: Nervous beyond

Well, I was back with my Friday group. And my chemo nurses and I was fine. They know "how" to talk to me and it went perfectly fine. I will work on the trust issue. Only time will heal that.
AND, happy to report, that despite the commotion, my CEA and 15-3 are in the normal range, and my liver function has returned to pre-T-DM1 levels. GO Karen!
Still in so much discomfort, popping Hydromorphone for pain (turns me into a sleepyhead)...want my summer back and I'm going to get it!
Thanks for sharing so much with me.
Kicking and screaming, even at 55%, go away cancer, I'm getting back on top,
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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Old 07-26-2013, 08:01 PM   #17
NEDenise
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Re: Nervous beyond

You go girl!
Keep that fighting spirit going strong!!

Sending love and prayers...
Denise
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Old 07-26-2013, 09:10 PM   #18
carlatte7
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Posts: 129
Re: Nervous beyond

So glad that all went well...prayers for you!
__________________
Age 54, married farm wife/school nurse/mom of 5 adult children...March 2012- found 2.5cm hard, non-painful mass on bse. It was not there, and then it was. Yikes.
Biopsy- DCIS, IDC, er-/pr-/her2+++, grade3. 1 node suspicious on us. Biopsy +.
Plan was for Neoadjuvant TCH x6, Herceptin q3w x a year.
May1- first chemo.
May 5- I could no longer feel the mass. Really. Neither could my oncologist.
July 2- 4th TCH- Oncologist cancels last 2 tx due to "complete response"
August6- lumpectomy with axillary node dissection. No disease present in breast. 1 out of 14 nodes + (4mm)
MUGA #2- 72%
Finished 30 rads Oct '12. Mild lymphedema noticed when I had 2 rads left.
Continue Herceptin q3w until next May
April '13- first mammo since surgery- calcium deposits that are " not concerning." Well, they are concerning to ME! Turned loose from surgeon for 6 months! One more Vit H, will make plans then for port removal.
Oct '13- no change in calcium deposits. "See ya in 6 months!" Keeping port for now.
March '14- oncologist says return in 6 mo.
April '14- mammo unchanged. Surgeon will see me in 6 months but no mammo for a year unless something changes. Its getting easier, but oh, boydo i hate that scanxiety! Keeping port until 2 year anniversary of last Herceptin.
Sept'14- bloodwork good, return to onco in 8 months.
Oct'14- surgeon will see me in April '15. Moving on.
May '15- mammo unchanged, keeping same schedule. Tumor markers soon and if all is well port comes out.
July '15-tumor markers normal. See onco in a year. Appt. for port end of month. First grandchild born July 1st- for today, life is good.
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Old 07-29-2013, 03:06 AM   #19
KsGal
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Posts: 585
Re: Nervous beyond

Im glad that the nurses were able to make you feel more relaxed and confident. With your drive and attitude, you at 55 percent have more power than most people at 100 percent. You just keep on kicking cancer to the curb. Prayers for continued success on the treatment plan... hugs.
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Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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Old 07-29-2013, 08:45 AM   #20
Nancy L
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Location: La Quinta, Ca
Posts: 253
Re: Nervous beyond

Karen,

Do you believe TDM-1 brought you down to 55%? I have had 14 doses and I feel that is what has happened to me. How high did your T. Bili run before you stopped and where is it now? Thanks for sharing.

Nancy
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