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Old 11-15-2016, 09:42 AM   #1
Paula O
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Update on Paula/Cancer Fightin' Words

Tomorrow I get weekly chemo #2 (Taxol). Last week I had a body shaking/teeth chattering type reaction to the loading dose of every three week Herceptin which I hope not to repeat again again. In 2011-2012 I never had any difficulties with Herceptin and I'm counting on a year of it in my aersenol again now. Hopefully that drip going slower than already slow and the additional pre-med, all will be fine.

I posted a health update, a link to a fun "Bald Headed Blues" song I thought you guys might enjoy, and a B & A of my daughter's hair donation to Pantene's Great Length's Program in my blog today: http://jpoliver.com/wordpress/archives/1623 . You fellow Her2 warriors are welcome to subscribe to my blog if you'd like. Anybody else here have a blog they want to share? I'd love to check it out.

I am thankful that two plus weeks of lots of PT/scar work at the clinic and at home helped my post mastectomy contracture that I got despite proactively exercising and using that arm: what a relief to be making headway on that challenge!

I read somewhere long ago that every cell in my body is listening to my thoughts. My friend Deb recently shared this quote with me along with a few of her impressions and I’ve been thinking about it’s implications in my life and especially in this cancer battle:


“The expectation of an event causes the same set of complex neurons to fire as though the event was actually taking place, triggering a cascade of events in the nervous system that leads to a whole host of real emotional and physical consequences.” from The Happiness Advantage. This is a psychological study of people who excel and seem happy in stressful, overwhelming circumstances. Basically, fully expecting something to happen produces all the same emotions and physical reactions as if the event actually happens. To repeat: We can fully experience all of the same anxiety and depression about an event JUST by expecting it to happen. I’m wondering how much grief I have caused myself over the years worried/expecting the worst to happen. Even if the worst does happen, I don’t need to experience it all weeks ahead of time. No wonder I’m exhausted”.

After reading this, I unearthed my "Cancer Fightin' Words" I started years ago and posted them here if anyone is interested: http://jpoliver.com/wordpress/archives/1548. Maybe you guys have some positive affirmations to add to my list.

One day at a time and we'll get through.

Have a great day!

Paula
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Old 11-16-2016, 06:27 PM   #2
caya
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Re: Update on Paula/Cancer Fightin' Words

Paula definitely get the slower drip. I think I did mine in 60 minutes instead of the usual 30 and it made a big difference for me.

Good luck sweetie.

all the best
caya
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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
13 Years NED!!
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Old 11-17-2016, 02:44 AM   #3
Paula O
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Re: Update on Paula/Cancer Fightin' Words

Thanks for the encouragement, Caya. They were already running the loading dose very slowly when I had the reaction so the next one will be slower than slow after an additional pre-med..

Did anyone else here have body shaking/shivering/ chattering teeth with Herceptin? They called them "rigors". The nurse said that it was my immune system responding to the drug being reintroduced. My temp also went up. If yes, was it a one time event for you?

Paula
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Old 11-18-2016, 02:39 AM   #4
Jackie07
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Re: Update on Paula/Cancer Fightin' Words

I think I did have the 'rigors' while getting Herceptin. Generally I fell asleep during most of the infusion time.

In 2007 I was scheduled to have the infusion Thursday afternoon. I would go to work Friday without too much problem. Then I would (sort of 'pass out' (sleeping day and night) the whole weekend.

Sending you good vibes.
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1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
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Old 11-18-2016, 02:56 AM   #5
Paula O
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Re: Update on Paula/Cancer Fightin' Words

How nice to hear from you, Jackie! How are you feeling/doing these days? I hope all is well on your home front.

Thanks for sharing your Herceptin experience.

Paula
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Old 11-22-2016, 11:46 AM   #6
SoCalGal
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Re: Update on Paula/Cancer Fightin' Words

Herceptin is not fully humanized and that can cause one's immune system to react.

I became allergic after YEARS of no problems, so now I have an intense premed regime and an equally as intense titration method. The first hour of herceptin is so slow that it's bumped up in 10 minute increments. The second hour is a steady rate, but very slow compared to norm. I've been able to tolerate treatment this way for several years.

Are they sure it was the herceptin you reacted to?

Do you start with that as opposed to the taxol?
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1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement and brain MRI shows improvement, resolved areas and nothing new. switch to single agent ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful. working on QOL and managing nausea.
3/18/20--->Just did cycle #5
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Old 11-23-2016, 12:30 AM   #7
Paula O
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Re: Update on Paula/Cancer Fightin' Words

SoCalGal asked:

Are they sure it was the herceptin you reacted to?

Do you start with that as opposed to the taxol?


Yes, I got the pre-meds first, then Herceptin was given next, followed by Taxol later. It's great that with adaptations in the pre-meds and titration you've been able to tolerate the Herceptin fine, SoCalGal. I'm glad.

I found this at http://chemocare.com/chemotherapy/dr...herceptin.aspx

The following side effects are common (occurring in greater than 30%) for patients taking trastuzumab. The frequency of side effects reported is based on single agent trastuzumab:

During the first infusion of this trastuzumab, you may develop chills or a fever. Your health care provider might prescribe medicine to prevent or treat these symptoms.

My temp went to 100.8 during the shaking chills which started about 20 minutes into the Herceptin drip. I was a bit surprised because I never had any kind of reaction during the year I took it in the past. My medical team was able to deal with it quickly without further incident and I was able to finish the infusion. Hopefully it'll just be a one time thing with the loading dose and no big deal with the addition of another pre-med and slow infusion.
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Old 11-23-2016, 06:41 AM   #8
Becky
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Re: Update on Paula/Cancer Fightin' Words

I felt horrible after the first Herceptin and of course that one is a bigger dose since it is the loading dose. I know it was Herceptin because I got it alone after chemo was over. It was not available when I started my journey (and the Herceptin trials wer e closed). I started 4 months after chemo was over since it was approved then for adjuvant use. I never felt bad again. Even after I switched from weekly infusions to the every 3 week infusion. I was nervous when I switched because that every 3 week infusion is a big infusion but I was fine and you will be too
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 15 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 11-23-2016, 08:36 AM   #9
MaineRottweilers
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Re: Update on Paula/Cancer Fightin' Words

Like many, my immune system immediately recognized Herceptin on reintroduction. My lymph nodes in my neck, chest and arms began to swell, my throat got tight, my skin flushed and I felt super hot. They stopped the drip and loaded on benedryl and dex, waited half an hour for me to return to normal and restarted the drip. Since then, I get a slug of Benedryl to start and have had no problems since that first reintroduction. I'm into my second year now. Hopefully, with premeds and a slower drip, you'll have no further complications.
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11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%)
HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!
2/5/18 CT & BS = STABLE

//
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Old 11-25-2016, 04:12 AM   #10
Paula O
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Re: Update on Paula/Cancer Fightin' Words

I hope you guys who celebrate Thanksgiving had a nice day yesterday. Our family enjoyed our time with relatives.

This past Wednesday I had to skip my #3 weekly chemo because my White Blood Count was 2.3 (normal WBC is 4.2 - 10 with cut off for treatment at 3) and my ANC was .9 (normal Absolute Neutrophil Count is 1.5 - 6.5 with cut off for treatment at 1.5). So now my new fashion statement is a mask when out in public. One good thing about no chemo this week is that it'll give the neuropathy a break too.

In 2011 I automatically got an injection of Neulasta to stimulate my bone marrow 24 hours after the every three week cycle of Carboplatin and Taxotare and my blood counts stayed high enough not to miss any treatments (other than missing that last chemo because of neuropathy) I asked and apparently that's not a part of the protocol for weekly Taxol. I suspect I'll get Neulasta next week if my white count is still low.

I sure wish oncology drugs could knock the cancer dead but not be so hard on the healthy parts of our bodies! What is your experience with low white counts during chemo? Did you still eat out? Any tips to avoid infection besides the mask in public, avoiding sick people, lots of hand washing and soaking vegetables in vinegar water, peeling raw produce, and steaming greens instead of eating them raw? I never eat sushi so missing out on raw fish is easy. I probably should be throwing our family's toothbrushes in the dishwasher more and disinfecting door and sink handles more. A flu or cold with low white counts could land a person in the hospital. I don't want to be a hermit or germaphobic through all this but want to take prudent precautions.

Paula
Blogging my way through this journey: http://jpoliver.com/wordpress/archives/1671
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Old 11-25-2016, 06:08 AM   #11
Becky
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Re: Update on Paula/Cancer Fightin' Words

I did grocery shopping online and had my husband pick it up. I ate no raw fruits or vegetables. I hand washed or use the hand gel constantly. I was so careful all the time. It was AC that did the number on me. 1.8 was my count. But I never landed in the hospital although I did get sick. I got a cold that wouldn't quit. 2 different rounds of antibiotics. Be careful and stay safe.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 15 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 11-25-2016, 11:28 AM   #12
TiffanyS
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Re: Update on Paula/Cancer Fightin' Words

Hi Paula, I got Neulasta during my first round of chemo, which I got every three weeks, however, now that I’m getting Taxol two weeks in a row with a week break, they cannot give me Neulasta as it stays in the system too long, and interferes with the chemo. Instead, they give me Neupogen, which I take for two or three days in a row after chemo, depending on how low my white blood count is. You have to fill the needle yourself, and they tell you how much to give yourself each day. This brings up my white blood count, so that I can still work and go out and about, but does not stay in my system long enough to interfere with chemo. You should ask your doctor about Neupogen.

My doctor told me from day one to wash my hands often, not to touch my face, not to hug people, especially kids, and to avoid crowds when possible. I also wash all fruits and vegetables with soap and water. Also, if anyone around me is sick, I’m to leave the room, or move as far away from them as I can. So far this has worked for me, as I have not gotten sick since last December, which was before I was diagnosed.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments.
10/16 – Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-3 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
12/16 – CT Scan scheduled for December 14. I can’t wait to find out if the Perjeta is working!
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Old 11-25-2016, 01:37 PM   #13
StephN
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Wink Re: Update on Paula/Cancer Fightin' Words

Hi Paula,
Great to hear you had such a nice Thanksgiving.

I have a couple of comments on your last post. With weekly taxol I DID get neulasta (it was new then) and only had to miss one treatment due to rock bottom counts. However that was part of the protocol on he trial I was on. I also was getting Navelbine with taxol, so that was a double whammy.

When I first got Herceptin I also had the shaking chills, and no amount of blankets and hot tea would stop it until my body had a chance to process enough of that loading dose. Never had that again except one time when I took a "Herceptin holiday" when I was on that drug alone as maintenance and went on a long trip.

As for living in a germy world when blood counts are low, I mainly tried to avoid sick people. I would run away from anyone coughing or sneezing or even clearing their throat. I would hang back and look at the checkout lines to see if anyone in the line or the clerk was showing any symptoms. I never touch a gas pump handle with out a paper towel and use the wipes for grocery carts or hand baskets. These are my habits still today.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 11-26-2016, 03:25 AM   #14
Paula O
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Re: Update on Paula/Cancer Fightin' Words

Thanks for your input too, Becky, Tracy, Tiffany, and StephN.

I'm going to ask about the Neupogen if my count is still low on Wednesday. My diet is high in raw fruits and vegetables. I was thinking I am ok with cleaning the produce with vinegar water and peeling what I can but maybe not.

My daughter has a cold. We are being very careful, sure hope I don't get it.

Have a nice weekend.

Paula
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Old 11-26-2016, 05:10 AM   #15
MaineRottweilers
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Re: Update on Paula/Cancer Fightin' Words

You should both wear masks and lots of hand washing. I hope you don't get sick. You don't need that right now.
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___________________________________________
11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%)
HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!
2/5/18 CT & BS = STABLE

//
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Old 11-28-2016, 05:28 AM   #16
TiffanyS
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Re: Update on Paula/Cancer Fightin' Words

The good thing about Neupogen is that it’s a lot cheaper than Neulasta. I couldn’t believe how expensive that needle was!

I feel like I’m fighting a cold right now. I’m not allowed to take Vitamin C while on chemo, but I can get it through natural products, so I’ve been drinking extra low sugar orange juice. I think it’s working as I no longer have that tingle in my throat. I have treatment tomorrow so I hope I’m not getting sick!

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments.
10/16 – Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-3 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
12/16 – CT Scan scheduled for December 14. I can’t wait to find out if the Perjeta is working!
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Old 11-28-2016, 05:41 PM   #17
IrvineFriend
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Re: Update on Paula/Cancer Fightin' Words

I had low cell count and my Dr. told me not to be surprised if I'm in the hospital that night, which I was. I very, very stupidly ate at a salad bar but likely would have caught something because I had no immune system, hence the prediction from my doctor. I was so bored because I didn't feel sick other than the initial 103F fever which went down as soon as I was given Tylenol. The worst part was having a high fever and they wouldn't allow me to have a blanket or coat on until I was admitted!
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Julie
Live in Orange County, CA

Diagnosed with DCIS Oct. 2012

Bilateral Dec. 19, 2012
IDC, ER/PR-, Her2+++, Grade 3
Stage IIIa
15.6 cm
4/14 nodes + macrometastases
First thing each morning, I try on my bathing suit. Then, nothing worse can happen the rest of the day.
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Old 12-01-2016, 12:37 PM   #18
Paula O
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Re: Update on Paula/Cancer Fightin' Words

Julie, no blanket or coat on must have been very uncomfortable. What was the reasoning, so you would be cooler with the fever?

After the skipped week of chemo because of the low WBC, my counts improved a little bit yesterday but not much. It was good enough to get chemo.I am getting walloped with each treatment and I can't see how I'll possibly be high enough next Wednesday for another treatment. I have a call in to see if I can get my CBC checked on Friday or Monday and get some Neupogen if it's low so maybe my blood work will be good enough to get the Taxol next Wednesday. I don't understand their hesitancy on stimulating my bone marrow. When I was on Carboplatin and Taxotare every three weeks in 2011 (same doc) I automatically got neulasta 24 hrs after each treatment and I always had reasonably good blood work considering I was on chemo.

If anyone is interested, I posted an update in my blog with a "cancer cup song" I'm thinking of adapting and personalizing for breast cancer--looks like fun to do. If it turns out, maybe some day I'll do it with my daughters and put it on Youtube: http://jpoliver.com/wordpress/archives/1588

Have a great day!

Paula
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Old 12-01-2016, 12:52 PM   #19
IrvineFriend
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Re: Update on Paula/Cancer Fightin' Words

I didn't care, every time they left my bed in the ER I threw my boyfriend's coat on! Yes, they wanted to keep me cool and hospitals are FREEZING. As soon as I was admitted, I was given 3 warm blankets.

I can't fathom why they aren't giving you Neupogen or Neulasta, especially if you have to skip a treatment! Clearly its knocking your immune system down. I was given it after every treatment after my little "vacation" in the hospital. Best wishes for you Paula and sorry you're having to get on the ride again.

-Julie
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Julie
Live in Orange County, CA

Diagnosed with DCIS Oct. 2012

Bilateral Dec. 19, 2012
IDC, ER/PR-, Her2+++, Grade 3
Stage IIIa
15.6 cm
4/14 nodes + macrometastases
First thing each morning, I try on my bathing suit. Then, nothing worse can happen the rest of the day.
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Old 12-02-2016, 09:40 AM   #20
Becky
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Re: Update on Paula/Cancer Fightin' Words

Even a couple of neupogen shots may help you out greatly. You have to have 24 to 48 hours between a neupogen shot and chemo but 3 or 4 may do the trick. You can't have neulasta because they last 10 days. This is why that is given if your chemo cycles are 2 to 3 weeks apart. Otherwise, you could ask about a 2 week schedule of which you would get more drug but could have neulasta which will bring you back to GO in 2 weeks time.

Love and hugs to you.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 15 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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