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12-22-2012, 05:07 PM
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#1
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Senior Member
Join Date: Dec 2006
Posts: 415
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Started Rads to chest for SVCS
Hi my friends~
Thank you for keeping me lifted and focused while enduring the chaos of last week.
After a very frank converstion with my new/old Rad Onc that involved a lot of negotiating, desperately trying to preserve any semblance of a normal Christmas, let alone the one I had planned, she said it was not safe for me to delay rads, take a break from rads after only a few treatments, and ultimately, it's not safe for me to fly as I'm already having symptoms of increased pressure in my head, neck & chest due to the SVCS. I was fighting so hard, and I could feel her trying to find a way to help me - help me have Christmas and help me stay safe. I finally said to her, through my tears, "Dr.G - I need to hear you tell me "No", because I'm going to keep negotiating with you, weighing the risks in my head and bargaining, even though I know what the wisest decision is." And she said, very calmly, "If you need to hear me say it, then the answer is "No."
And in that moment my mind, that had been swirling with speculation and problem solving, chaos, frustration, anger and fear, instantly became quiet. Not resigned, but strangely relieved. Relieved that the responsibility for my health and safety was placed confidently in her hands.
So I started 15 rounds of rads on Thursday. Today was 3 of 15, now a 3 day break for Christmas, then back on track.
I was also able to talk to my IR who had done my chemo-embo in 2010. He confirmed that stenting was not the best option and that radiation was the best course of action, and that reponse to rads for this condition is pretty quick. He assured me that he would be available for the next week, but then would be away, and asked if I still had his cell (from when he gave it to me in 2010) and gave it to me again. He said he was available to me even while on vacation if I needed to ask a question.
Now, that is the care, compassion, concern & experience that I am more familiar with than the dangerous combo of arrogance & inexperience in the young RadOnc (I call her Dr.Newbie) that I initially consulted with.
Incidentally, my IR asked me "off the record" why I switched Rad Onc's and I told him in no uncertain terms why. I was also very clear with my Onc how unpleasant & inappropriate Dr.Newbie's "bed-side manner" was. She's got a lot to learn and at least I feel confident she's surrounded by a lot experts and wisdom, just hope she absorbs it - quickly.
It was difficult to tell my family, knowing that not only were my plans to surprise my LA family on Christmas day annihilated, but their holiday would be twinged with sadness. I'm heartbroken over that.
But, I have an amazing family, who immediately made changes in their travel plans to come and be with me for Christmas. My mom is going to stay through my radiation treatment. My sisters are coming in shifts, up to New Year's and then after, to celebrate my birthday.
So with a plan in place, we press on.
I'm even finding a way to participate in the hustle & bustle of Christmas, running to the mall after morning rads, and even taking a photo with Santa.
He asked me what my Christmas wish was, and I told him "Health & happiness for my loved ones, and to be Cancer Free."
Keeping the Faith~
Jessica
Dx-5/17/02 - 33 yo; Stage IV - L IDC w/single liver met
1) Herceptin + Navelbine x 8 weeks - No response; progress to innumerable,immeasureable liver mets
2) ISIS 2504 + Herceptin - 6 mos, partial response
3) Taxol + Herceptin x 13 weeks to NED!
NED for 1 year
9/04 - Single liver lesion recurrence
Taxol + Herceptin - on/off to beat back lesion
12/05 - R Hepatectomy; Liver NED until 2009
3/06- Local recurrence - Left breast, IDC & DCIS, but holding treatment while continue to heal from Hepatectomy.
12/06 - L mastectomy + reconstruction through 8/07
10/07 - Recurrence - supraclav nodes
4) Gemzar + Herceptin - on/off controlling nodes thru
9/08 - 7wks Rads to supraclav nodes
10/08 - Acute Renal Failure - nodes in belly stricturing kidneys. placed permanent ureteral stents
Back on Gemzar + Herceptin , but no longer responding.
5) 05/09 - Tykerb + Xeloda - partial response x 5 mos
6) 10/09 - Xeloda + Herceptin - no response, disease progresses
7) 2/10- Ixempra + Herceptin - partial response x 12 wks.
Discovered single brain lesion x 4mm & liver lesions growing while screening for TDM1 + PI3Kinase study.
6/10 - Novalis to treat brain met - SUCCESSFUL!
8) 6/10 - Chemo-embo w/Adriamyacin to de-bulk liver lesion.
9) 8/10 - Screened & Started TDM1 EAP
Immediate response, disease in belly responds dramatically.
2/11- questionable progression of lung nodules
Discontinue TDM1
10) 3/11 - PI3Kinase + Herceptin - intial good response in 1st 6 weeks but LFT's elevated.
11) 7/11-Discontinue PI3Kinase + Herceptin study;
Disease progression - 2 small lesions in colon – docs have never seen this before in BC
11) 8/11 –Start new combo Halaven+Herceptin
10/14/11 -Completed 3 cycles (9 wks)Halaven+Herceptin...
10/18/11 - Scanxiety time -1st scans since starting this regimen
Good interval response, continue on H+H!
10/25/11 – new 2mm questionable spot in brain? Due to Novalis or new disease?
Re-scan in 8 weeks.
1/3/12- Disease progression; 50%increase size & SUV-R lung, middle lobe 6cm lesion.
R supraclav node multiple, miscellaneous nodes in belly. Colon lesions fired up.
12)Herceptin+ metronomic Cytoxan + Methotrexate.
…on a hope & a prayer. Only chemo I haven’t been on is Taxotere.
Hurry up Pertuzumab & TDM1!
Follow Up Brain Scan on 1/18/12…pleasepleaseplease be okay. I can’t take much more.
1/18/2012- 8 new spots in 8 weeks since last Brain MRI
one 2cm spot in brain stem, one 2cm spot in R temporal lobe.
No symptoms, THANK GOD!
1/25/12 – Start WBR x 15 rounds
2/10/12 – Oral Cytoxan WORKING! Melted supraclav node & undetectable by US!
2/14/12 – FINISH 15 rounds WBR
6/12/12- Continuing on oral Methotrexate BID & Cytoxan qpm, but on chemo break
for 3rd week due to low counts.
6/15/12 – Yay! Resume chemo J
6/25/12 – Chemo break again due to low counts L
6/28/12 – PET Scan & Brain MRI this week…
NED IS BACK!!! NED in the HEAD, NED in the BODY!
10/26/12 – Still NED in the HEAD, but single troublesome node in chest, precariously close
to superior vena cava/heart. Not a perfect scan, but pretty darn good.
Maintain current treatment and Echocardiogram on 11/1 to keep an eye on node.11/1/12 –echo shows normal cardiac function J & node non-threating,
but experiencing symptoms of Superior Vena Cava Syndrome (obstruction/compression)
12/3 - hold cytoxan & methotrexate bc counts too low.
12/13-moved up PET scan due to increased SVC symptoms
12/14 –No more NEDL node progression causing increased SVC symptoms
12/17 – repeat echo & new chest mri for closer look…
Radiation to chest node recommended, change of systemic treatment pending
12/20-started 15 rounds of rads to chest for SVCS |
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12-22-2012, 06:17 PM
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#2
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Senior Member
Join Date: May 2010
Location: Elizabethton, TN
Posts: 418
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Re: Started Rads to chest for SVCS
As I read your wonderful post - I was thinking -she experienced what our pastor means when he says "may you have the peace that passes all understanding". And how interesting it came to you with the word "No". It sounds like you will have a wonderful Christmas even while going through the treatments. You are amazingly strong and your faith is a blessing to us all.
__________________
Joni -64 yrs old -
3/01/10: found lump in rt.breast
3/12/10: mammogram/ultrasnd/biopsy-invasive bc & DCIS; 2 tumors (2cm er-/pr-/HER2-& 1.8 cm er-/pr-/HER2+); grade 3;poorly differentiated
3/24/10:sent.node biopsy clear
3/31/10:bi-lateral mx.;atypical ductal hyperplasia-lft side
4/21/10:wound revision-infection/scarring 4/28/10:seromas both sides
5/21/10:port installed,TCH chemo (6 x 3 wks); Herc,-1yr; 33 rad tx after chemo
07/2010: port not working-2nd port didnt'work;3rd port opposite side.
07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
08/2010: hospitalizations w/3 of chemos; decision to stop after 4th-on to radiation in Oct 2010;Herc cont.
12/03/2010 - finished 33 rads Hooray!! cont. Herc. every 3 wks
4/2011 - pneumonia ??? Nope-radiation pneumonitis. No more Herc.
5/2011 - NED!!! port out.
8/2011 - clean PET & CT scans.Still NED
7/2012 - Still NED/very blessed.
2/2013 - 6 mos checkup-all clear. CA2729 down frm 13 to 11.
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12-22-2012, 07:01 PM
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#3
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: Started Rads to chest for SVCS
o.k., you have a good plan now, good docs, know what to do and are doing it........and you have super cool family members who know how to go with the flow. I am relieved for it all. Although it may not be the Christmas you had planned it sounds like you will still get to be surrounded by loved ones/cherished ones..........and know that you are taking care of yourself medically. So, here is to a great (but different than expected) Christmas. You are amazing and so is your family!!! Merry Christmas and here is to a better and more peaceful New Year !
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12-22-2012, 07:43 PM
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#4
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Senior Member
Join Date: Jul 2011
Location: Sydney, Australia
Posts: 473
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Re: Started Rads to chest for SVCS
So happy that the uncertainty and stress of last week has moved on Jessica. And really pleased that you have found a way to be part of the Christmas madness as well - I'm sure that made you feel alive! I hope that your wish comes true and that you have a wonderful Christmas with your family, who obviously love you very much.
Best wishes, Marie
__________________
dx Dec 2000 dcis 2.5cm clear sentinel node, ER/PR- Her-2+
lumpectomy, 6 cycles AC, 6 weeks rads
October 2007 three x 2.5cm lung mets. 8 months Taxol, started Herceptin and continue. Significant reduction in lung mets.
June 2011 3cm x 4cm liver tumour. Started Abraxane and continue with Herceptin.
November 2011. Finished with Abraxane, continue with just Herceptin. Liver tumour now reduced to 15mm x 12mm. Lung tumour now 10mm x 0.5mm
February 2012. Scans show everything stable, and brain scan clear.
July 2012. PET/CT scans show I'm in remission - no active cancer!
]Dec CT brain cllear, lungs stable, liver tumour has increased to 20mm. PET scans showed active liver met and active lung thinglet, and possible bone met.
Jan 2013 recommence Abraxane, continue with Herceptin.
June 2013 finish Cycle 6 Abraxane, continue with Herceptin. 30% reduction in liver tumour, everything stable.
December 2013. CA15-3 on rise.
February 2014. PET and CT scans show single liver tumour has increased to 35mm. No other activity.
March 2014. Planned for SBRT for liver met, but couldn't have treatment as tumour too close to bowel. Continue Herceptin.
April 2014. Surgeon advises that I am a good candidate for liver resection, so will have operation early May (after camping holiday). Tumour now 44mm x 29mm.
May 7, 2014. Two liver tumours surgically removed. Third of liver removed, and gall bladder. Am I NED?May 2014. Pathology of tumour shows it's now ER+ (95% staining).
June 2014. CA15-3 has decreased to 18 from a pre-surgery reading of 59!
June 2014. Started Femara, continue with Herceptin.
July 2014. Stop Femara due to severe Osteoporosis. Commence Tamoxifen, continue Herceptin. Waiting to hear if I can have Aclasta infusion.
August 2014. CA15-3 has decreased further to 12 - YAY!
October 2014. Aclasta infusion for Osteoporosis. November 2014, CA15-3 decreased to 11. Scans of liver all clear, something new showing up on lung, but just watching at the moment.
November 2015. Started SBRT on solitary lung met.
November 2015. Bone density scan showed very good improvement so back on Femara - yay!
December 2016. 6 treatments of SBRT radiation on lung. Seems to have had some effect.
June 2016. CA15-3 still stable and low at 9.
June 2016. Started subcutaneous Herceptin replacing infusion.
Jan 2017. LVEF dropped to 46%. Stopped Herceptin.
Feb 2017. Started ACE Inhibitor and BETA Blocker. Still off Herceptin.
Aug 2017. Two new mets - Portacaval lymph node and mediastinal lymph node.
Aug 2017. Blood tests show extremely elevated liver enzyme levels. Many tests to investigate.
Sept 2017. Portacaval lymph node blocking liver bile duct causing liver enzyme and Bilirubin problems.
Oct 2017. 8cm stent inserted into liver bile duct. Procedure caused pancreatitis, and hospitalised for 3 days. Liver enzymes improving rapidly.
Nov 2017. Commenced 4 weeks of radiation on Portacaval lymph node. 5 week break before chemo.
Jan 2018. CT scan. 11 new small liver mets, and new superclavical lymph node med.
Jan 2018. Start Kadcyla. CA15-3 426.
Apr 2018. First scans since starting Kadcyla. All tumours reducing. CA15-3 dropped to 30 from 426.
Dec 2019. Still on Kadcyla, but two small brain mets have been treated in the past month with SRS. CA15-3 stable for 12 months at 11.
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12-22-2012, 08:14 PM
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#5
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: Started Rads to chest for SVCS
You have been, and continue to be an amazing beacon of hope and joy, my friend!
So happy you'll be able to get the treatment you need and still surround yourself with the love and care of those who cherish you most.
God Bless you Jessica! Merry Christmas, and Happy New Year!
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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12-22-2012, 11:10 PM
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#6
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Started Rads to chest for SVCS
What a wonderful family you have. They just turned their plans around to make sure you stay included! That is a great outcome and, from what you have said of your mom, she is a great helper. This is a gift you two can only give each other.
I like Bonnie's hubby's words of wisdom about the situation being smarter than we are at times.
__________________
"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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12-23-2012, 12:17 AM
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#7
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Started Rads to chest for SVCS
Jessica,
What a wonderful story. Thanks for sharing! May you and your family have a wonderful Christmas!
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
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.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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12-23-2012, 02:35 AM
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#8
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Senior Member
Join Date: Feb 2007
Location: Cordoba, Mexico
Posts: 672
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Re: Started Rads to chest for SVCS
My dear Jessica, I am glad there is a plan now of what treatment you need to follow, greater is that you will have your family around with you during this time of the year. God always put things in place. May you have a good holiday and enjoy your family visit.
Love always,
Paty
__________________
Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
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12-23-2012, 02:59 AM
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#9
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Senior Member
Join Date: Jul 2011
Posts: 954
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Re: Started Rads to chest for SVCS
That's great things are coming together for you and you've got a good plan and medical team. Have a wonderful time with your family!
Paula
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12-23-2012, 03:57 AM
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#10
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Senior Member
Join Date: Apr 2011
Location: Port Hedland, Australia
Posts: 382
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Re: Started Rads to chest for SVCS
Happy holidays to you and all your family - being together is really the only important thing at this time of year - Ii hope your 3 days off treatment and fun filled, joyous and restorative to carry on kicking butt!!
__________________
Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy
Praying the Herceptin is as good as its hype!!
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12-23-2012, 04:12 AM
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#11
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Senior Member
Join Date: Jul 2010
Location: South Jersey
Posts: 516
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Re: Started Rads to chest for SVCS
The peace and understanding that comes only from surrounding to God's will - what a great thing. Sounds like He's got other plans for Christmas for you. I bet you'll have a great time. Keep us posted. Still praying...
- Penny
__________________
...but he said to me, “My grace is sufficient for you, for power is made perfect in weakness.” I will rather boast most gladly of my weaknesses, in order that the power of Christ may dwell with me. (2 Corinthians 12:9)
Penny
July 2010 IDC grade 3 stage 3 er-/pr-/her2+++, BRCA2
Skin mets 11/10
1/12/11 Surgery path - complete response
Rads 2/11-4/11
Liver mets 11/11 now stage IV
Xeloda & Tykerb 12/11
Allergic reaction to Tykerb 12/11
Xeloda only 12/11
Added herceptin January 2012
Progression February 2012.
Started Veliparib (parp inhibitor) trial 3/5/12.
4/30/12 Liver met shrunk in half! Praise Jesus!
6/18/12 another 25% shrinkage, down to @3x3. Thank you, God!
8/8/12 Brain MRI - clear! Praise to You, Lord Jesus Christ!
8/27/12 Thank You, God - another 20% decrease in liver met! Now @ 3.2x1.9.
10/5/12 stable-ish
11/21/12 allergic reaction to carboplatin
12/10/12 stable & progression
12/31/12 liver ablation
2/6/13 ablation successful but new tiny mets in liver. May or not be cancer.
Another ablation scheduled 2/28/13. Cancelled.
2/20/13 started taxotere & herceptin. Pretty toxic. Oncologist says start tdm1 4/3/13. From her lips to God's ears. Praying for no allergic reactions/adverse side effects.
3/28/13 increase in liver mets - number & size
4/3/13 started TDM1
6/25/13 Praise God! Scan shows only one viable lesion and it's smaller.
10/8/13 MRI shows 1 large and two small tumors.
10/11/13 Ablation of tumors. It's in God's Hands.
10/23/13 Jesus and TDM1
12/19/13 Started trial of palbociclib & herceptin after scan showed growth of liver tumor and a questionable spot on rib.
2/6/14 CT scan - previous suspicious spot on rib probably damage from radiation - Praise God! MRI - over 200% growth in cancer in liver.
2/19/14 started Navelbine, Perjeta, & Herceptin combo.
5/2-5/4/14 hospitalized with very high liver function numbers, plus skin and eyes are yellow, plus urine is orange. Feel ok, so doctor not sure if liver failing due to cancer, chemo, or infection. Hospital gets numbers to go down and sends me home. MRI done in hospital reveals cancer shrinking - praise God!
5/6/14 - 5/8/14 hospitalized with no white blood cell count. Released when they go back up, @ 6 days after doctor gave me a neulasta shot.
5/16/14 - informed blood cultures done in hospital are back and that I contracted hepatitis e. Have to take ribavirin (anti-hep med) until liver function numbers are back to "normal" before re-starting chemo. Will probably go on veliparib and temodar this time.
5/26/14 - my birthday - GI doctor informed me that the hepatitis e was completely gone - I didn't even need the anti-viral meds! This is a miracle from God!
5/28/14 - started veliparib and temodar (compassionate use)
8/18/14 MRI shows 90% growth in liver tumors
8/20/14 start Perjeta, Herceptin, & Navelbine. Thanking & giving Glory to God for each moment.
9/22/14 - 9/24/14 Hospitalized with 102.2 fever and neutropenia
11/13/14 ER for high fever and fast heart rate. Got both down with IV antibiotic and fluids. Sent home same night. Thank You, Lord!
12/2/14 MRI shows progression in liver. Grateful to God that I still feel good.
12/11/14 Simulated SIR-spheres. Successful. Real thing (1st lobe) scheduled for the 23rd. Also starting Xeloda on 22nd for 2 weeks because it's synergistic with the spheres.
12/23/14 SIR-spheres in left lobe of liver. On Xeloda 12/22/14 - 1/4/15.
1/7/15 Receiving Perjeta & Herceptin while awaiting next course of action.
2/9/15 SIR-spheres in right lobe of liver. On Xeloda for 2 weeks (started 2/8). Still on Perjeta & Herceptin. Don't know what's next for me. :-)
3/25/15 Final read on MRI report - there are new and multiple lesions in both lobes of liver. Sigh. Praise God I've made it this far!
4/1/15 Started Gemzar & Herceptin. 1st week G&H, 2nd week G only, 3rd week off. Thank You, Lord, for this option.
4/15/15 Labcorp - liver enzymes in 200's. Appointment 4/22 with oncologist to discuss. Also, "radiation recall" in previously treated area? Very itchy. Need to discuss.
4/22/15 Enzymes came down. Received reduced dose of Gemzar only. No herceptin. Will get labs at lapcorp next two weeks since taking break for vacation purposes. Treat radiation area.
5/9/15 ER for severe abdominal pain. Constipation. Sent home with meds and advice to follow up with oncologist regarding jaundice and bilirubin.
5/11/15 Hospitalized for rising bilirubin and jaundice. CT scan reveals larger and more constricting tumors in liver.
5/13/15 Met with my oncologist. Bilirubin came down. If still down by Monday, I'll get chemo. If not, than I guess I'll see you all in Heaven. Praise God. Please pray, pray, pray.
5/18/15 Bilirubin jumped up. Trying lowered dose of Ixempra, with Herceptin. Oncologist is surprised that I'm functioning so well, given the high bilirubin. I have anywhere from 2 weeks - 2 months to live.
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12-23-2012, 05:26 AM
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#12
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: Started Rads to chest for SVCS
Dear Jessica,
Only two more days till Christmas.
I know you will have a wonderful one, filled with family and love.
Very close countdown now.................!
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12-23-2012, 07:36 AM
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#13
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: Started Rads to chest for SVCS
Hey, Jessica, can you post your photo with Santa? I'd love to see that! In the meantime, please know that while I am sorry your trip had to be foregone, I am overjoyed to hear Christmas will happen for you. Nice to know you are so loved that your family is dropping all to head your way. Please let us know when you begin to feel a lessening of symptoms since you stated the rads have a tendency to produce quick results in your condition. Hoping you will feel less shortness of breath and pressure by year's end! You are one tough, brave cookie! I admire your pluck and determination.
A very Merry Christmas to you, Jessica, and warm wishes for a wonderful birthday!
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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12-23-2012, 11:27 AM
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#14
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Senior Member
Join Date: Apr 2012
Posts: 183
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Re: Started Rads to chest for SVCS
Dear Jessica,
I am so happy that your family will be with you. Enjoy the holiday and have a wonderful birthday. I am proud that you asserted yourself with the new radiologist. Peace be with you.
Take good care,
Jackie
__________________
10/11 IBC Stage IV; 1 liver met 4.6 cm.
10/11-2/12 TCH for 6 rounds
3/12 Right MRM
5/12-7/12 33 Radiation treatments
8/1/12 Started Perjeta along with the Herceptin
10/12 Scans said NED for first time
5/15 UWSeattle Vaccine Trial 3 months
12/16 Scans still show NED. Herceptin and Perjeta continue indef.
8/17 Taken off Perjeta;staying on Herceptin. Still NEAD.
3/18 Still NEAD
8/19 Now on Subcutaneous Herceptin
10/21 Remain on Subcutaneous Herceptin (Hylecta)
11/21 CT showed possible lung mets. Was told to wait and see until scan
1/22 CT shows continued growth
03/22 Lung Biopsy said sample was too small but nodules keep growing and IR is convinced that it is indeed cancer
04/22 Oncologist referred for consult for a transbronchial biopsy. This does not sound pleasant
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12-23-2012, 04:52 PM
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#15
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Started Rads to chest for SVCS
All the best to you for a successful outcome.
What a wonderful family to come and be with you for Christmas. You are blessed.
Peace, hope and health in 2013.
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12-23-2012, 08:20 PM
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#16
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: Started Rads to chest for SVCS
Jessica,
I had awesome Christmas plans and was going to spend time in the Sierras with my family. My hubby had a dental emergency and boom - we couldn't go. He's neutropenic, and it scared the heck out of me. But he's tough like you Jessica and is healing up nicely.
My sister went up without us, and my nephew and brother-in-law are having a blast with all the crazy amount of snow that is being dumped right now.
We've been sending pics back and forth, and texts. It is the first Christmas we've been apart in many decades.
I've got the 3 foot tree from Home Depot, the stocking up by the fireplace and the Christmas music playing non stop. So its not so bad.
Ah . . . so I can totally relate to being disappointed about not being able to go. So glad you are not out here, the weather out here is crazy with the rain and snow.
I love hearing your family is coming out to see you - so very cool!
Ahhhh . . . shucks. I wish you were free of cancer too. And why can't you be? Let's all gang up on God and pray for it.
Merry Christmas Jessica. May it be more than normal, may it be a magical, beautiful holiday.
__________________
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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12-24-2012, 03:01 PM
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#17
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Senior Member
Join Date: Mar 2006
Posts: 4,778
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Re: Started Rads to chest for SVCS
don't know if this applies ie if you had a port and which side it was on vs where your problem is
I deduced they think your problem is from the bothersome node---just one more thing perhaps to think about if response to Rads is not what what they expect(Hopfully, it is!):
http://www.dirjournal.org/pdf/DIREPUB_5781_online.pdf |
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12-25-2012, 01:38 PM
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#18
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Senior Member
Join Date: Dec 2006
Posts: 415
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Re: Started Rads to chest for SVCS
Thank you again everyone. My mom and sister are here and we've had a nice cozy Christmas thus far. While they're here we're going to shop, eat my mom's cooking and I surprised them with tickets with the latest Cirque du Soleil that's in town. And I sprung for the seats 'close enough to see their faces' as I know my mom prefers.
And yes, the SVCS is the result of a once described 'troublesome node', now referred to as a 'significant mass' in my chest, compressing the superior vena cava & likely in contact with the right atrium of my heart. I do believe the symptoms are mildly improved, but I'm careful not to bend over as to lower my head below my heart, crouch or squat & sleep propped up.
I now this treatment will work. I just know it. Just need a systemic therapy option as I'm not eligible for Pertuzumab & can't wait for TDM1.
Hope everyone's enjoying a Happy Christmas~
Keep the faith!
Jessica
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12-25-2012, 03:25 PM
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#19
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: Started Rads to chest for SVCS
Jessica,
I posted a reply ( or thought I had) a couple days ago but obviously forgot something! Too bad, I worked very hard on it and felt I was very eloquent in expressing my feelings about how YOU must be feeling. Lost in cyberspace...
Anyway, what I wanted to say was I felt such relief for you when I read your post that I cried. It was like having an unshoulderable burden lifted from you. It is so hard to fight with so many options, so many"experts" and so much at stake. You are so very strong and full of life.
When I get caught up in trying to over manage complicated treatment choices, I usually end up completely paralyzed by the over analysis and the feeling that there are actually no, or many, "right" answers. If I'm lucky, I remember I just need to surrender it, and my prayer is for wisdom for my caregiving team.
You have a great team, who seem to be smart, on your side, and fully on board with you in this fight. You also have a great family who loves you and it sounds like you are having a special Christmas, if not the one you had planned.
Much love to you my friend,
Chris
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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01-07-2013, 09:28 AM
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#20
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: Started Rads to chest for SVCS
Hi Jessica,
How are you doing? Give us an update if you have time.
K
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