HER2 Support Group Forums - View Single Post - Starting Halaven & other updates

jml · 08-13-2011, 07:20 PM

Hi Friends~
Well, this is long overdue...though I do check in often to "see" your voices. I think I was waiting for a good time to post, but it seems that 'good time' is a sort of relative.
First & foremost, my heart ached when I read that sweet "DarleneDenise" had passed - she and I had connected over screening & starting the TDM1 EAP in Nashville around the same time last August. We even met once and had chance to share a hug. She personified the strength, courage and humor of all of my friends here & God bless her husband and son and all the loved one's she's left behind.

TDM1 worked wonders for me, shrinking back the disease that had me home-bound and bedridden last Summer. I was on it from August to February and I truly believe that I was taken off the drug way too prematurely. I've always had questionable small lung nodules (only 2-3) , and even though a bronch confirmed the disease, I'd never suffered any symptoms, nor did my Oncs feel threatened by them. Unfortunately, there is just no room for flexibility in the Clinical trial world, so that was the end of my TDM1. I'm holding my breath that it will somehow become available again soon for all of us - the disease that it cleaned up in my belly still has not returned and it's been a year now!

After TDM1, I enrolled in a PI3Kinase + Herceptin trial - also in Nashville. 2 pills daily & Herceptin q3wks. I tolerated that pretty well too, just bad diarrhea & GI cramping & issues. But after 6 consecutive weeks of treatment & stable labs, my liver enzymes shot through the roof - 400's. Unfortunately, it took 28 days for those labs to return to WNL and again, the Clinical trial folks said that I had to be pulled from the study. I even met with a hepatologist and had a colonoscopy to explore my GI issues, but there was nothing conclusive about why my LFT's went so crazy. I hope if anyone else has access to this study that you'll have the opportunity to enroll because I do think it's controlled my disease.
While I'm sad & scared that I had to stop yet another trial, I had SO MANY FRUSTRATIONS with clinical trial folks - so unorganized, poor communication often resulting in my having to adjust work & travel from Atlanta to Nashville because they just couldn't seem to get my schedule straight. I'm glad to be back in the care of my primary onc and feel much more confident that I won't be forgotten or prioritized.

Amidst all of this my sweet Pops had a catastrophic stroke. He's home now rehab'ing with my mom at his side & now 4 months later he's just beginning to try speaking. He was an active, tennis-playing University professor at the time of this CVA and to see him lose his independence has been so hard. He has gotten physically stronger and is able to walk now with only a little assistance. The brightest spot it all of this is the incredible love my parents share and the endless patience and encouragment my mom has as she nurses my Pop back.

Ironically, while we were 'watching the clock' on my LFT's - waiting for them to return to WNL- the results from my colonoscopy came back. The 2 small areas of inflammation are in fact, mets. The GI doc was just as shocked as my Onc-they said it's really unusual to find BC mets in the GI. They said they've seen GI mets with lobular bc, but never before IDC. My previous issues were with disease in the lymph nodes surrounding my intestines & kidneys.

So now it's time for Halaven. I'm so grateful that it's available, but am so bummed about losing my hair for the 3rd time - though in the scheme of things, I know the hair thing is not so important. I was scheduled to start the new combo last Tuesday, but after ~6wks off treatment, my platelets were too low, so I just got Vitamin H, no Halaven. This is scary too, because I've had so many weeks off all treatment, you would think that my body would be strong, labs all looking good, etc.
I'm crossing fingers that my platelets will be high enough next week because I really, really want to start the Halaven.
I had scans to re-stage last week & see what's going on inside, but for the 1st time in this 9 year battle, I don't want to know where or what this disease is doing. I've had a hard time getting focused and positive and ready to fight again & think I might need an antidepressant to pull me out of this dark place. It's scary to "feel" the disease - in my GI, wonder what this dry-cough & incessant need to clear my throat is, and is this a headache or something else?
I just want to get started on treatment & knock this monster back again.

Phew! That was a long-winded update...Hopefully something in my note will be helpful, somehow, just like your posts bring me confidence, courage and comfort.

Keeping the Faith~

Jessica
Dx-5/17/02 - 33 yo; Stage IV; L IDC w/single liver met
Herceptin + Navelbine x 8 weeks - No response; progress to innumerable,immeasureable liver mets
ISIS 2504 + Herceptin - 6 mos, partial response
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
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.
05/09 - Tykerb + Xeloda - partial response x 5 mos
10/09 - Xeloda + Herceptin - no response, disease progresses
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!
6/10 - Chemo-embo w/Adriamyacin to de-bulk liver lesion.
8/10 - Screened & Started TDM1 EAP
Immediate response, disease in belly responds dramatically.
2/11- questionable progression of lung nodules
Discontinue TDM1
3/11 - PI3Kinase + Herceptin - intial good response in 1st 6 weeks but LFT's elevated.
7/11-Discontinue PI3Kinase + Herceptin study;
Discover progression of 2 small lesions in colon.
TODAY~ Anxiously awaiting to start Halaven

ps-sorry if some of the dates don't add up...i'm actually surprised that i remember as much as i do!

08-13-2011, 07:20 PM	#1
jml Senior Member Join Date: Dec 2006 Posts: 415	Starting Halaven & other updates - long overdue Hi Friends~ Well, this is long overdue...though I do check in often to "see" your voices. I think I was waiting for a good time to post, but it seems that 'good time' is a sort of relative. First & foremost, my heart ached when I read that sweet "DarleneDenise" had passed - she and I had connected over screening & starting the TDM1 EAP in Nashville around the same time last August. We even met once and had chance to share a hug. She personified the strength, courage and humor of all of my friends here & God bless her husband and son and all the loved one's she's left behind. TDM1 worked wonders for me, shrinking back the disease that had me home-bound and bedridden last Summer. I was on it from August to February and I truly believe that I was taken off the drug way too prematurely. I've always had questionable small lung nodules (only 2-3) , and even though a bronch confirmed the disease, I'd never suffered any symptoms, nor did my Oncs feel threatened by them. Unfortunately, there is just no room for flexibility in the Clinical trial world, so that was the end of my TDM1. I'm holding my breath that it will somehow become available again soon for all of us - the disease that it cleaned up in my belly still has not returned and it's been a year now! After TDM1, I enrolled in a PI3Kinase + Herceptin trial - also in Nashville. 2 pills daily & Herceptin q3wks. I tolerated that pretty well too, just bad diarrhea & GI cramping & issues. But after 6 consecutive weeks of treatment & stable labs, my liver enzymes shot through the roof - 400's. Unfortunately, it took 28 days for those labs to return to WNL and again, the Clinical trial folks said that I had to be pulled from the study. I even met with a hepatologist and had a colonoscopy to explore my GI issues, but there was nothing conclusive about why my LFT's went so crazy. I hope if anyone else has access to this study that you'll have the opportunity to enroll because I do think it's controlled my disease. While I'm sad & scared that I had to stop yet another trial, I had SO MANY FRUSTRATIONS with clinical trial folks - so unorganized, poor communication often resulting in my having to adjust work & travel from Atlanta to Nashville because they just couldn't seem to get my schedule straight. I'm glad to be back in the care of my primary onc and feel much more confident that I won't be forgotten or prioritized. Amidst all of this my sweet Pops had a catastrophic stroke. He's home now rehab'ing with my mom at his side & now 4 months later he's just beginning to try speaking. He was an active, tennis-playing University professor at the time of this CVA and to see him lose his independence has been so hard. He has gotten physically stronger and is able to walk now with only a little assistance. The brightest spot it all of this is the incredible love my parents share and the endless patience and encouragment my mom has as she nurses my Pop back. Ironically, while we were 'watching the clock' on my LFT's - waiting for them to return to WNL- the results from my colonoscopy came back. The 2 small areas of inflammation are in fact, mets. The GI doc was just as shocked as my Onc-they said it's really unusual to find BC mets in the GI. They said they've seen GI mets with lobular bc, but never before IDC. My previous issues were with disease in the lymph nodes surrounding my intestines & kidneys. So now it's time for Halaven. I'm so grateful that it's available, but am so bummed about losing my hair for the 3rd time - though in the scheme of things, I know the hair thing is not so important. I was scheduled to start the new combo last Tuesday, but after ~6wks off treatment, my platelets were too low, so I just got Vitamin H, no Halaven. This is scary too, because I've had so many weeks off all treatment, you would think that my body would be strong, labs all looking good, etc. I'm crossing fingers that my platelets will be high enough next week because I really, really want to start the Halaven. I had scans to re-stage last week & see what's going on inside, but for the 1st time in this 9 year battle, I don't want to know where or what this disease is doing. I've had a hard time getting focused and positive and ready to fight again & think I might need an antidepressant to pull me out of this dark place. It's scary to "feel" the disease - in my GI, wonder what this dry-cough & incessant need to clear my throat is, and is this a headache or something else? I just want to get started on treatment & knock this monster back again. Phew! That was a long-winded update...Hopefully something in my note will be helpful, somehow, just like your posts bring me confidence, courage and comfort. Keeping the Faith~ Jessica Dx-5/17/02 - 33 yo; Stage IV; L IDC w/single liver met Herceptin + Navelbine x 8 weeks - No response; progress to innumerable,immeasureable liver mets ISIS 2504 + Herceptin - 6 mos, partial response 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 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. 05/09 - Tykerb + Xeloda - partial response x 5 mos 10/09 - Xeloda + Herceptin - no response, disease progresses 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! 6/10 - Chemo-embo w/Adriamyacin to de-bulk liver lesion. 8/10 - Screened & Started TDM1 EAP Immediate response, disease in belly responds dramatically. 2/11- questionable progression of lung nodules Discontinue TDM1 3/11 - PI3Kinase + Herceptin - intial good response in 1st 6 weeks but LFT's elevated. 7/11-Discontinue PI3Kinase + Herceptin study; Discover progression of 2 small lesions in colon. TODAY~ Anxiously awaiting to start Halaven ps-sorry if some of the dates don't add up...i'm actually surprised that i remember as much as i do!