Starting Halaven & other updates - long overdue

[jml]

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!

[Ellie F]

Wow Jessica
Your courage and determination to fight on blow me away!
Firstly so sorry to hear what a hard time you're having and hope the new combo will do great things.
So sorry to hear about your dad and hope he continues to regain his independence.
Your experience of clinical trials really made me think. I suppose ppl who haven't participated think it will be very organised but I guess that's not always the case.
Sorry about your hair. It's not silly to think about it.When I lost mine for the second time I cried like a baby when it fell out even though I knew I had no choice, looking at our sister Sheila though makes me think it will come back pretty quick!

Thanks for keeping us informed and I also pray T-DM1 will be available for all really soon.

Ellie

[Pam P]

Jessica - I was so glad to see your post. I've been thinking of you and worrying too since there was no update. You've had so much going on.

I'm sorry to hear about your dad and I hope that he can gain back more strength and independence. I'm currently on Halaven and it has worked well so far. I have scans this week - like you I'm not sure I want to know the results.

I hope Halaven will work wonders for you - I'm sure it will. And not being in a trial you can't get pulled off just to fit their criteria.

Your comments about disorganization and lack of attention in trial settings gives me lots to think about. I've been considering applying for tdm1 in case the scans this week show halaven no longer working. I'd have to travel out of state and would dearly miss the care of my doc and chemo nurses who give me such personal attention. Wish we knew when that drug will be approved.

So encouraging to hear how well the trial drugs worked for you to stop those mets. Now may Halaven clean up all the rest of the new, remaining, and questionable spots.

Your strength is an inspiration to me. You've really kept strong through this last year and I pray this year will be so much easier on you. Peace, Pam

[hutchibk]

Thanks for such a thorough update! You have been through the mill, lady... but such determination to plow on through is uplifting!

I am curious about your colonoscopy? How long has it been since your last one? My last one was 4 years ago and was clear, so my Gastro doc doesn't feel I need one yet, maybe next year. He, of course, said that they don't see bc mets in the GI tract or colon, usually. He is having me do a < yuck, hide your eyes if you don't want to read the words ; ) > stool sample lab test which he said is a good back up for peace of mind... did you have reason to suspect something, or did you just get normal screening colonoscopy?

Also, as one who is on T-DM1, and as a heavily treated patient, I am aware of the hit that our platelets can take, and I found this link with dietary ideas to help our platelets recover. Maybe it can help you at this time? Worth a try! http://www.ehow.com/how_6068029_natu...platelets.html

I hear you about the attitude that can come along w/ the clin trial setting, luckily I dodged the bullet of a 'challenging' clinic just down the highway from me here in TX, and have ended up instead flying every three weeks to a STELLAR one in Denver. (Rocky Mountain Cancer Clinic, Rose Location). It is worth the airfare to be in their capable, loving hands, I must say.

Best wishes and keep us posted!

[StephN]

Dear Jessica -
So glad to hear you have continued to climb out of your homebound state. And very happy to hear you could get enough of the T-DM1 to do that much damage to the lesions. That in itelf holds much promise. I recall that you taught pilates, so being inactive would be that much more difficult!

I know how hard it is when our dear dads crash suddenly from an active, upright status. Your dad is making better progress than mine did.

Hope you can get your Halaven this week. I am curious - will you keep on getting Herceptin with the other Vitamin H?

My best thoughts and prayers that you can get a fix on these new mets and send them to the stratosphere.

[tricia keegan]

I don't have any advice to offer Jessica but you've been through so much and I hope you get the Halaven this week and wishing a good response for you!

[jml]

Hi Friends~

Thanks so much for your sweet notes of encouragement.
Just got home from the Infusion Center -
No treatment again today b/c my counts have continued to drop - Hgb & Hct dropped a bunch, my platelets have dropped a bit, but more significantly my wbc's.
I've been feeling a little bit off the past few days and running a low grade temp.
BUT, I did get Herceptin...and I DID get one dose of Halaven two weeks ago - so strange how I COMPLETELY forgot and was truly confused about why my hair started falling out in the shower.
I feel sad for my bone marrow and that it's having such a hard time recuperating and just not bouncing back like it used to.
So here's the plan...
Today - Herceptin + started Neupogen (3 days)
Tomorrow - 2nd shot of Neupogen
Thursday - transfusion - 2 units.
It sounds like a lot, but I'm so glad we have a plan in place. In fact, if my wbc's come up w/the help of the Neupogen, I may even get Halaven on Thursday!
Cross fingers, toes and bone marrow!

Re: Clinical trials - I've done 3 now, in the past 9 years, one being the TDM1 EAP...the last trial, the PI3Kinase study was by far the worst experience.
I hate to even say that, because I like to think the nurses and the staff are doing their very best, but the amount of frustration and level of miscommunication just added up to sloppy research at best, and that is not good. I've thought about writing to the Sponsor but it's just seems like so much to have to deal with while I'm still trying to get this current treatment plan underway.
I hope my experience won't discourage you from participating or pursuing really good study drugs that are out there - like TDM1 through the EAP.
You just have to be vigilant that the study staff is working as hard as you are to give you every possible chance to get through the screening process and stay on the drug for as long as it is benefitting you. Unfortunately, there is no/very little room for flexibility or creative interpretation of the inclusion criteria and in my case, I think this Research group has so so many studies running concurrently that the nurses don't/can't keep all the details straight.
It's of course helpful if there's someone close to you that knows your treatment history and really understands research - fortunately for me, my sister works for BigPharma and did absolutely everything, short of chemo, to make sure we all stepped carefully forward with each part of the process.

Also, I think I have a really great team of primary docs/oncs - and the difference in the level of care that I receive from docs that have known me for 9 yrs vs. 1 yr is significant. Lastly, we are a rare breed - this group of BC survivors is without question the most well educated & informed population of BC fighters that most nurses or people in the in the medical community will come across, who are accustomed to participating in our care, questioning our options and really driving the bus.

Gonna take a little nap now - feel a little off & probably running a lil low grade temp again, but FYI -my TCM doc (traditional chinese medicine) said there's research to support that a fever is actually beneficial in the fight against the monsters, so if I can ride out the discomfort of a low grade fever, it would be a good thing.
Of course we have to be smart about it & if my temp goes above 100.5, it's time to intervene.

Hope everyone's week is off to a great start~

Keep the Faith

Jml

[kathyG]

Dear JML, your messages are very uplifting to those of us just starting on our journey into the realm of chemotherapy. The strength that you show is amazing. I only hope that I can continue to feel as you do about fighting this disease. Sometimes it seems overwhelming so I try to take simply one day at a time, or one minute at a time as I can. Please keep us updated so that we can keep in touch and pray for you. You show great faith in your updates, something I wish to have also. God Bless. kathyG/Queazy

[hutchibk]

Thanks for your update and blessings to you! On the flip side of your clin trial experience, I have only been in the one I am in now... and I have an absolutely stellar experience with everyone from the staff to the doctor of my trial. And I have to fly from Texas to Denver for it every 3 weeks. I guess every location is different. I feel very fortunate! So sorry you had issues.

[ElaineM]

Thanks for sharing. You are an inspiration!! I have my fingers crossed that Halaven will work like magic for you. In the meantime eat lots of healthy food to get your blood counts up. Good wishes going to both your and your dad. I hope the both of you will have better days ahead.

[Pray]

Jml, You are amazing! What a great attitude you have! You have made me feel so much hope! Thank you for sharing it, it means so much to us who are still so scared out of their minds! I'm not in your shoes but, I too share the low white cells and I have been off chemo for well over a year. I often worry what would happen if my cancer comes back. I'm sure this doesn't help you much but please know that you are in my prayers!! Also, Love your closing statement "Keep the Faith"

[Sheila]

Jessica
Your resolve is amazing...I always get such encouragemnt when i read your posts. I was also diagnosed in 2002. Been in treatment with no breaks since 2003. Just went off Halaven, but had 7 amazing months with stellar results....and little side effects other than hair loss (which started regrowing while I was on it) and issues with my white counts towarsd the end. I took Neupogen and Neulasta and that solved the issue. Hoping it knocks the cancer back...I was on TDM-1 before halaven, but had progression after only 3 treatments, so was off the trial. I think had Pertuzamab been added, I would have done better.
Your issues with your Dad is also a stress, so happy to hear how your Mom is handling nursing him back to health....we learn so much about love and perseverence from our parents.
Keeping you in my prayers Jessica...you are an amzing warrior, an ICON of strength to all who read your posts! Keep strong, fight hard!

[jml]

Wow! What an amazing bunch of friends you are.
Your responses brought me to tears - again.
But this time, good ones

Today I went in for my blood transfusion and got 2 units - YAY.
My wbc's are up, with the help Neulasta, so I got Halavan - YAYAYAAA.
I'm probably going to be on a every other week schedule rather than 2 weeks on, 1 week off, just so my counts don't get knocked down every time.
And so far, so good on the Cipro.
I know things may get a little rougher over the weekend, but I'll just make sure I have everything I need so I don't have venture out.
However, my hair's really starting to come out now. It's definitely thinner and I think I'm going to have a buzz it off sooner than later.
This is the 3rd time to go through this so I'm much less determined to hold on to the hair as long as I can.
Better get to wig shopping.

Thanks to all of you for helping me keep afloat to feel happier and focused and full of fight again~

Keep the Faith~

Jml