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Old 01-24-2013, 09:34 AM   #1
jml
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Join Date: Dec 2006
Posts: 415
These SE's are no JOKE!

Hi All~

It's been a week since my 1st Pertuzumab+
Herceptin+Taxotere infusion & I'm having a rough time.
I've been so concerned bout the Pertuzumab SE's that I forgot that Taxotere comes with it's own bag of tricks

Initially it was just GI issues - the big D and constant abdominal pain, but now I also have a new rash on different spots of my torso, spontaneous nose bleeds,
itchy/sore eyebrows & eyelids, itchy scalp and now, mouth sores. My poor mouth feels like I've eaten 5 bags of salt & vinegar potato chips & my tongue is too big for my mouth. And I'm more fatigued in spite of my Hgb & Hct are almost normal.

I guess I had gotten bit spoiled on my 5 week reprieve from chemo during the holidays & my chest radiation, so I forgot what it feels like to always feel a little like poo.
I even got an adjusted dose of taxotere because my plateletts are low - I can't imagine how I would feel on whole dose of Taxotere.
Since this regimen is only q3weeks, I'm hoping these SE's will get better these next two weeks and even abate with each successive cycle. I want to be on this combo as long as I can & I don't want to give up on this combo because the SE's are so rough. I don't know how I did it before, so many times before.

Oh, I forgot to update how the chest radiation for SVCS went. By evidence of my symptoms, it seems to have been very effective. The swelling into my face & neck is all but completely resolved, my ears/head doesn't feel stuffed up, but most importantly, I can bend over or crouch down without feeling like my head's going to explode. I can see my collarbones again and the veiny blue veins in my chest have disappeared. And I can sleep flat again!
I finished on January 10, and will follow up with the Rad Onc at that time. I'm not schedule for a CT scan, but my NP said I can request one if I choose.

So the journey continues and so far 2013 is starting off better than last year.
This time last year I was switching to my 14th line of treatment, before Pertuzumab was approved and nothing left in my medicine cabinet. And WBR for 8 lesions in my brain.
This year my brain remains NED from successful WBR, the last combo I was on worked for about a year, which is pretty darn good stretch after 10.5yrs exposure to so so many chemos, my most recent chest rads did their job
and I'm on a new breakthrough drug that will help me kick is Stage IV Monster down again.

Always 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
12/20-1/10 -15 rounds of rads to chest for SVCS
1/8/13- Brain still NED!
1/17 - Started Pertuzumab, Taxotere, Herceptin - these SE's are pretty tough!
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