Oh how I hate to share not good news, but unfortunately my scans were NOT good.
I had been gloriously NED in body and brain after a particulary difficult battle in both my body and brain for the first half of the year. Ever since, I've been doing well, if not for lazy bone-marrow that has kept me anemic and wbc's & plateletes miserabley low.
About 3-4 months ago I noticed my resting heart rate creeping up-80's, 90's, now 100+bpm's- and some other symptoms that indicate a chest node that didn't
seem troublesome from the September PET scan and follow up Echo, but was a potential threat to my Superior Vena Cava -obstruction/compression, has in fact become problem.
In the past couple of weeks I've exhibited an increase in my syptoms, so we pushed my PET scan up a few weeks to yesterday.
Unfortunately it appears my treatment-Methotrexate + Cytoxan - which had been so gloriously effective for the past 11 months that I got see NED again after 5 years of continuous treatment (10yrs+on this journey) has stopped working.
I don't have details about the scan, other than my onc is concerned enough that she scheduled a stat repeat echo & MRI of my heart for today, but I wasn't able to adjust my schedule to go. So I'm scheduled for Monday morning.
I'm upset on so many different levels, but particularly alarmed because she said that if I don't feel well or become more syptomatic over the weekend to go the Emergency Room, asap.
Has anyone else heard/experienced SVC Syndrome?
In addition to changing to a new treatment - there are only 2 left for me - how did you address it? Just symptomatic control through radiation or a stent?
I'm anticipating that the next step is going to be towards Pertuzumab, but know that many others had a challenging time getting it approved by their insurance because of the stringent prescribing limits that the FDA approved the drug. This will most definitely NOT be a first line treatment for me...I've lost count - 13th line? 14th line?
Trying to manage my disappointment and search for information about what I should/shouldn't do so not to exacerbate the symptoms or increase stress on my heart. My BP remains low, as is normal for me.
The silver lining is that the rest of my body appears to be pretty clean, except for a few lung nodules that have waxed & waned over these many years.
I hope, I hope, I hope my brain is okay. I'm not scheduled for another Brain MRI till the beginning of next year, but I think I might push the date up.
Thanks so much in advance for whatever information you can offer.
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 NED
L node progression causing increased SVC symptoms
12/17 – repeat echo & new chest mri for closer look…
Sad, scared, heartbroken
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