HER2 Support Group Forums - View Single Post - Disappointed, frustrated, sad, scared and a lil angry...

jml · 12-17-2012, 10:32 PM

Hi Friends~
I'm exhausted from a 9 hour day at my treatment center -chest mri, echo, onc consult, rad onc consult , lots of waiting- and so disheartened & unresolved about a plan to treat this chest node that has grown so much it now threatens my heart.
What do you do when you've been fighting this disease longer than some of the Dr's & residents have been in medicine? And they just don't get it...no sense of a patient fighting to preserve Quality of Life while we endure treatment after treatment, compromising, sacrificing, accomodating this nasty disease.
So tired in so many ways right now.
It's been such a difficult, bumpy year - All I wanted was a normal Christmas.
As this node has grown & progressively threatens my Superior Vena Cava and heart, I have been experiencing increased symptoms. So much so that the NP, who has cared for me for the past 9+yrs, suggested that if I had increased symptoms over the weekend that I go immediately to the ER and be admitted to hospital.
I was hoping to consult with an Interventional Radiologist today about stenting the SVC to mitigate the symptoms & keep me safe until radiation and systemic therapy can knock down this node, but that didn't happen.
Instead I wrestled with a Rad Onc Resident that couldn't keep up with my 3 page, 10.5 yr disease & treatment history as she interviewed/evaluated me and a Rad Onc that is so committed to her treatment recommendations that she wouldn't answer my questions about why we can't stent the SVC first, buying me a few extra days to preserve my holiday plans with my family, and start rads when I return from my trip.(Her response was, "My husband is an IR. Do you want me to ask him?")
Then after repeatedly telling me that the stent would only be symptomatic treatment while rads would shrink the tumor and relieve the symptoms (uh, hello, I KNOW that, as will systemic tx, but both will take time to kick in), I just acquiesced, agreed to sign the consent - which they noted that if I choose not to do rads that my "treatment options - stenting" WHAT?
She also then gave me her card to contact her tomorrow with my decision, then a few moments later said, "I leave for vacation tomorrow." And no, her card does not have her contact ph # or email.
The list of atrocities & confusion & unprofessionalism during that consult is so long, I can barely keep track.

The bottom line is I want this stenting procedure to buy me 15 days of normalcy, to enjoy the holidays with my family, then start rads after I return from my trip.
I just want a normal Christmas.
I often find that I compromise being decisive and clear about what I want bc I don't want to appear frivolous, demanding, non-compliant &/or disrespectful.

Am I being frivolous and demanding for wanting to prioritize QofL, even if that means an invasive (minimally however) procedure that only buys me 15 days, but will ensure that I don't progress into a crisis while we're waiting for rads or new chemo to kick in & do their jobs and give me and my family, at the very least, a non-disruptive, if not normal Christmas?

All of this could end up being a moot point, as only an IR can make the decision about whether or not I'm a candidate for stenting, but I need someone on my side to help me push for this.
Fighting "the system" is more exhausting than eduring chemo, radiation, et al.

Trying to keep 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

12-17-2012, 10:32 PM	#1
jml Senior Member Join Date: Dec 2006 Posts: 415	Disappointed, frustrated, sad, scared and a lil angry... Hi Friends~ I'm exhausted from a 9 hour day at my treatment center -chest mri, echo, onc consult, rad onc consult , lots of waiting- and so disheartened & unresolved about a plan to treat this chest node that has grown so much it now threatens my heart. What do you do when you've been fighting this disease longer than some of the Dr's & residents have been in medicine? And they just don't get it...no sense of a patient fighting to preserve Quality of Life while we endure treatment after treatment, compromising, sacrificing, accomodating this nasty disease. So tired in so many ways right now. It's been such a difficult, bumpy year - All I wanted was a normal Christmas. As this node has grown & progressively threatens my Superior Vena Cava and heart, I have been experiencing increased symptoms. So much so that the NP, who has cared for me for the past 9+yrs, suggested that if I had increased symptoms over the weekend that I go immediately to the ER and be admitted to hospital. I was hoping to consult with an Interventional Radiologist today about stenting the SVC to mitigate the symptoms & keep me safe until radiation and systemic therapy can knock down this node, but that didn't happen. Instead I wrestled with a Rad Onc Resident that couldn't keep up with my 3 page, 10.5 yr disease & treatment history as she interviewed/evaluated me and a Rad Onc that is so committed to her treatment recommendations that she wouldn't answer my questions about why we can't stent the SVC first, buying me a few extra days to preserve my holiday plans with my family, and start rads when I return from my trip.(Her response was, "My husband is an IR. Do you want me to ask him?") Then after repeatedly telling me that the stent would only be symptomatic treatment while rads would shrink the tumor and relieve the symptoms (uh, hello, I KNOW that, as will systemic tx, but both will take time to kick in), I just acquiesced, agreed to sign the consent - which they noted that if I choose not to do rads that my "treatment options - stenting" WHAT? She also then gave me her card to contact her tomorrow with my decision, then a few moments later said, "I leave for vacation tomorrow." And no, her card does not have her contact ph # or email. The list of atrocities & confusion & unprofessionalism during that consult is so long, I can barely keep track. The bottom line is I want this stenting procedure to buy me 15 days of normalcy, to enjoy the holidays with my family, then start rads after I return from my trip. I just want a normal Christmas. I often find that I compromise being decisive and clear about what I want bc I don't want to appear frivolous, demanding, non-compliant &/or disrespectful. Am I being frivolous and demanding for wanting to prioritize QofL, even if that means an invasive (minimally however) procedure that only buys me 15 days, but will ensure that I don't progress into a crisis while we're waiting for rads or new chemo to kick in & do their jobs and give me and my family, at the very least, a non-disruptive, if not normal Christmas? All of this could end up being a moot point, as only an IR can make the decision about whether or not I'm a candidate for stenting, but I need someone on my side to help me push for this. Fighting "the system" is more exhausting than eduring chemo, radiation, et al. Trying to keep 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 Last edited by jml; 12-17-2012 at 10:34 PM.. Reason: typos