HER2 Support Group Forums - View Single Post - Hospital stay & Hair Loss...makes for a full week:(

jml · 02-04-2013, 07:51 PM

HI My Friends~
Meant to post when I got home last Wednesday after a SURPRISE 5 day hospital stay for severe neutropenia (.9 - should be 4-10), severe dehydration, and blood born staff infection. UGH!
I started PHT ~3 weeks ago & the following 10 days were wrought with side effects gone wild. I thought the GI issues were bad, and the rash, but the mouthsores were really really awful, preventing me from eating & drinking.
I woke last Saturday with 102.6 temp and was told by the onc on-call to go straight to ER. So I did. Had no idea it would turn into a 5 day stay, with 2 types of IV antibiotics, twice a day, fluids & virtual isolation. I was so dehydrated that my urine looked like motor oil & my tongue like a dried chicken breast dog treat!
I've dealt with tough side effects many times on this 10.5 yr odyssey, but never so severe that I required hospitalization.
In retrospect, I think we started me on chemo too soon after finishing chest radiation - only waited a week. My poor bone marrow has become so sluggish in the past year and a half, with few breaks from systemic treatment. And on the day that I got my 1st PHT my counts were already so compromised that they had to reduce/adjust the dose so that I could start. My WBC's were only 2.4, so there was only way to go from there but down.
I can't argue with starting the combo because I was anxious to get started and clean up anything disease left over after radiation.
I was dischared after 5 days in hospital with a WBC of only 1.5, but the infection was resolved and all my counts were heading in the right direction they said it was better/safer for me to be at home than surrounded by all the bugs in the hospital.
So I've been very compliant - not going out, drinking lots, washing hands lots. My energy is pretty good, so I wiped down all my counters and cleaned house, but am nervous to go anywhere until I know my counts are WNL.
I'm scheduled for my next cycle of PHT on Thursday, but will ask to delay an extra week to give my counts a chance to really reach WNL. I don't want another dose reduction just so that I can get the treatment. Don't want to set myself up for another hospital stay.

Sadly, my hair - as thin & fine as WBR has left it- started falling out tonight. I'm so sad. This is the 5th time I'll lose my hair, 3rd time since August 2011. It never gets easier for me. You'd think it might, but it just doesn't. I have to remember the process of losing it is so hard, but once it's gone, it's gone and one less thing to worry about.
And if a single person tells me I should by an electric pink wig, or that I can "totally rock the bald look" or "you're so pretty, even without hair." I'm going to SCREAM!
I always try to be more gracious when people say dumb things, but my patience & grace have worn thin.
I'm getting tired my friends...I don't know what I mean by that, but I'm sad tonight and just exhausted by all of it.
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
12/20/12 – 1/10/13 -14 rounds of rads to chest for mass causingSVCS
1/17/2013 – Started Pertuzumab, Herceptin, Taxotere
1/26-1/30 – Surprise hospital stay for severe dehydration, dangerously low counts & blood born staph.

02-04-2013, 07:51 PM	#1
jml Senior Member Join Date: Dec 2006 Posts: 415	Hospital stay & Hair Loss...makes for a full week:( HI My Friends~ Meant to post when I got home last Wednesday after a SURPRISE 5 day hospital stay for severe neutropenia (.9 - should be 4-10), severe dehydration, and blood born staff infection. UGH! I started PHT ~3 weeks ago & the following 10 days were wrought with side effects gone wild. I thought the GI issues were bad, and the rash, but the mouthsores were really really awful, preventing me from eating & drinking. I woke last Saturday with 102.6 temp and was told by the onc on-call to go straight to ER. So I did. Had no idea it would turn into a 5 day stay, with 2 types of IV antibiotics, twice a day, fluids & virtual isolation. I was so dehydrated that my urine looked like motor oil & my tongue like a dried chicken breast dog treat! I've dealt with tough side effects many times on this 10.5 yr odyssey, but never so severe that I required hospitalization. In retrospect, I think we started me on chemo too soon after finishing chest radiation - only waited a week. My poor bone marrow has become so sluggish in the past year and a half, with few breaks from systemic treatment. And on the day that I got my 1st PHT my counts were already so compromised that they had to reduce/adjust the dose so that I could start. My WBC's were only 2.4, so there was only way to go from there but down. I can't argue with starting the combo because I was anxious to get started and clean up anything disease left over after radiation. I was dischared after 5 days in hospital with a WBC of only 1.5, but the infection was resolved and all my counts were heading in the right direction they said it was better/safer for me to be at home than surrounded by all the bugs in the hospital. So I've been very compliant - not going out, drinking lots, washing hands lots. My energy is pretty good, so I wiped down all my counters and cleaned house, but am nervous to go anywhere until I know my counts are WNL. I'm scheduled for my next cycle of PHT on Thursday, but will ask to delay an extra week to give my counts a chance to really reach WNL. I don't want another dose reduction just so that I can get the treatment. Don't want to set myself up for another hospital stay. Sadly, my hair - as thin & fine as WBR has left it- started falling out tonight. I'm so sad. This is the 5th time I'll lose my hair, 3rd time since August 2011. It never gets easier for me. You'd think it might, but it just doesn't. I have to remember the process of losing it is so hard, but once it's gone, it's gone and one less thing to worry about. And if a single person tells me I should by an electric pink wig, or that I can "totally rock the bald look" or "you're so pretty, even without hair." I'm going to SCREAM! I always try to be more gracious when people say dumb things, but my patience & grace have worn thin. I'm getting tired my friends...I don't know what I mean by that, but I'm sad tonight and just exhausted by all of it. 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 12/20/12 – 1/10/13 -14 rounds of rads to chest for mass causingSVCS 1/17/2013 – Started Pertuzumab, Herceptin, Taxotere 1/26-1/30 – Surprise hospital stay for severe dehydration, dangerously low counts & blood born staph.