HER2 Support Group Forums - Started Rads to chest for SVCS

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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 chemoJ
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