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-   -   Chemo Failure #3...now I'm doing what??? (https://her2support.org/vbulletin/showthread.php?t=57533)

chrisy 03-08-2013 12:51 PM

Chemo Failure #3...now I'm doing what???
 
You all know I'm notorious for not posting updates, particularly not-so-happy ones. I tend to sneak little hints in other posts...

But as my her2family, I know you want to hear what's going on, even if it's scary:(

As Denise would say, I'm definitely on a "one set of footprints" track and am seriously running out of options.
If you don't want to read the details, don't...but I am again asking for bold prayers for next week - I know that when I don't feel well its nearly impossible to keep my head and spirit in the right direction!

So, here goes: hard to believe that a year ago next week I started on a trial that shrunk my stupid liver tumors by like 70% over the course of 5 months! Then stopped working in August.

Since then I've been on a sampler tour of the diminishing list of chemos untried; first taxotere/perjeta (although I think the perjeta helped, the taxane failed), followed by navelbine and then gem/carbo. The stupid tumor not only refused to lie down, but grew through each of these!

It's challenging my HOPE (both Rugo and in the larger sense of the word). But we are not giving up.

Monday I will undergo the first of multiple TACE procedures (trans-arterial chemoembolization) to hopefully get some stability and buy time to set some other paths.

It is multiple procedures because I have so much disease and other complicating factors which make it riskier, so the plan is to "go gently, not just cowboy it". Direct quote from the IR, who I like very much. The procedure itself is not supposed to be painful, but the aftermath can be as "we're shooting a crapload of chemo directly into the tumor and it really pisses it off" (another direct quote). Well, a liver full of tumors + mild ascites and bloating is painful already!

She has had some patients not do well with the side effects, while another went to Bali during the 2 week break before treatments. Maybe I should buy tickets now:)

I told the people at Genentech to get their a$$es back to work and pronto. Don't rest on your TDM1 laurels, now it's all about Chris because she's so greedy for life.

Thanks always for your love and support. I haven't posted much lately because I just haven't had the energy...but know that I think of and pary for you daily.
Chris

NEDenise 03-08-2013 01:06 PM

Re: Chemo Failure #3...now I'm doing what???
 
No! No! No!
Chris,
There may only be one set of footprints in the sand...but there are lots and lots of us following behind...praying and lifting you up!

From now, through Monday, and until I hear an update, I'll be banging on the gates of heaven on your behalf. You've been so brave, fought so hard for all of us...you deserve a break.

And, sister, I'm just the one to pester the Lord till he's sick of hearing it!! I'm on a mission. Our Chris needs a full-blown, spectracolor miracle! And dammit! I'm gonna ask for it...shamelessly...boldly. I'm even going to add in that you don't need any ugly side-effects to deal with. (Tickets to Bali, are of course, optional.)

Sending you prayers, love, and a warm healing hug across the miles.
Try to rest, in His arms, and ours...
Denise

phil 03-08-2013 01:45 PM

Re: Chemo Failure #3...now I'm doing what???
 
i forget details of how long t dm-1 worked, etc., could it be tried w/ pert ? , has herc/tyk been tried ?

Jackie07 03-08-2013 01:45 PM

Re: Chemo Failure #3...now I'm doing what???
 
Chris,

The procedure sounds promising. I'm sending you good vibes.

http://en.wikipedia.org/wiki/TACE

StephN 03-08-2013 01:46 PM

Re: Chemo Failure #3...now I'm doing what???
 
Prayers - YES.

Tix to Bali - YES. I am ready to return ... know a great guide.

Chemoembolization - very little talk of that on this board, so we will look forward to your description when you feel like posting it. Here's to a real "pisser" of a direct hit.

Hopefully this approach to the stubborn liver tumors will give the rest of your body a little break to recover. Been missing your cogent and insightful comments.

Redwolf8812 03-08-2013 02:20 PM

Re: Chemo Failure #3...now I'm doing what???
 
Prayers going up! You're due for good news and this is it!

- Penny

Barbara H. 03-08-2013 03:31 PM

Re: Chemo Failure #3...now I'm doing what???
 
Chris,
Your post just broke my heart. I remember when you went on TDM-1 and it was working so well for you. We were on it for a while at the same time.
TDM-1 was working so well for you that I actually thought that you might remain NED and never have to switch to something else. I'm hoping that your procedure will buy you some more time to find your magic bullet again.
My thoughts and prayers will continue to be with you.
Kind regards,
Barbara H.

europa 03-08-2013 03:45 PM

Re: Chemo Failure #3...now I'm doing what???
 
Praying HARD. I hope that visualization works as I am visualizing the cancer screaming as it breaks apart and dissolves as they do the procedure.

Midwest Alice 03-08-2013 05:17 PM

Re: Chemo Failure #3...now I'm doing what???
 
Chris, praying the cancer gets pissed off and dies.

tricia keegan 03-08-2013 05:37 PM

Re: Chemo Failure #3...now I'm doing what???
 
Chris, you are one hell of a strong lady and will find something to beat this I'm sure, but I'm saying a few prayers too which can't hurt!!!

sassy 03-08-2013 06:13 PM

Re: Chemo Failure #3...now I'm doing what???
 
Loads of prayers for you my dear.
With a side of mole' to boot!
You will kick butt yet again, no doubt.

Bill 03-08-2013 07:04 PM

Re: Chemo Failure #3...now I'm doing what???
 
Hey, Chris! You have my prayers, Young Lady. (The entire lot of you do). Thanks for keeping us in the loop. You hang in there.
Hugs, Bill

Paty 03-08-2013 07:20 PM

Re: Chemo Failure #3...now I'm doing what???
 
All my love and prayers for you Chris! Hugs, hugs.

KDR 03-08-2013 07:31 PM

Re: Chemo Failure #3...now I'm doing what???
 
Aww, Chrisy, I saw your post and had to walk away for a few hours. I just can't believe what some of us have to endure.

The letdown of a failed regimen feels like our skins are ripped off. No protection. No progress...no success. These are the times we, The Conquerors, get up and stab the XXXXer in the heart. I'm so mad I could scream.

You have been a beacon for so many, look at you...you are not a paper tiger. You, my friend, are the real thing, and you and Genentech and your team will figure this out.
From NY to CA, one big warm hug,
Love
Karen

Soccermom 03-08-2013 07:33 PM

Re: Chemo Failure #3...now I'm doing what???
 
Chrissy, Am favoring the concept of the cancer "dying"! Yes, Genentech we need you to get to work !!

Sending love,strength and hope..

Marcia

'lizbeth 03-08-2013 08:06 PM

Re: Chemo Failure #3...now I'm doing what???
 
Chrisy,

I hope the procedure gets you right back to health.

Wishing you a smooth recovery!

BonnieR 03-08-2013 08:17 PM

Re: Chemo Failure #3...now I'm doing what???
 
Chrisy, wow, you even got Bill to come out of the woodwork! You have some serious horsepower on your side. I love the feisty quotes from the radiologist. And then you said"she"! What a formidable team you will make! Take no prisoners, you two.
You know I love you. We all do. Keep the faith

Emy 03-08-2013 08:31 PM

Re: Chemo Failure #3...now I'm doing what???
 
Chris...
I send you love and prayers...This is such a difficult struggle....stay strong and positive...keep trying....eat asparagus (good for your liver)...ask about Mediforem, a diabetic drug that inhibits growth of liver tumors. What about radio ablation of the liver, where they burn out the tumors.....why did you choose chemoembolization over radio ablation .....I have been pushing for this, but am waiting to see results from perjeta, herceptin and taxol....6 weeks of treatments so far...taxol weekly, perjeta,herceptin every 3 weeks....I too had dcis in 2001, never told HER2poositive and after 5years of tamoxifen was told I was cured.....until 2010....my liver tumors have never gone away since 2011 which is why I want them out......I know how you feel, and you need to stay strong and positive and keep fighting....I am glad you are having the TACE procedure...
Love, Eileen

Catherine 03-08-2013 09:15 PM

Re: Chemo Failure #3...now I'm doing what???
 
Hi Chris,

Thanks for your honest report. This is not the story you wanted to tell or the one we wanted to hear. That being said, it sure sounds like you and your doctor are doing all the right things. I will be praying that the treatment next week works and that you tolerate it without having to cancel your trip to Bali (ha, ha). You are one of the leaders of the band and we are all listening to your beat.

Rock on, Catherine
PS Have you heard of Dr. Burzynski? I just read a review about an indy movie about his theory on cancer and his fight with the FDA. I do not know anything about it. I will put it on a new post.

Bunty 03-08-2013 09:24 PM

Re: Chemo Failure #3...now I'm doing what???
 
Oh Chrisy, you are amazing that even in the midst of this set back you worry about us. I am sending you prayers and hope, and wish that with the TACE your tumours "die an agonal death"!
Marie x

chrisy 03-08-2013 09:31 PM

Re: Chemo Failure #3...now I'm doing what???
 
Phil -TDM1 worked for me for 3 years, to NED. I've also been wondering if we might be able to rechallenge with tdm1 and go for a broader blockade.

Emy - I too was interested in the radioembolization; we chose the TACE because my onc has seen better results with that that. There was also less chance of an insurance hang up. I've also been looking at metformin and the pathways it targets, that might be a good pay as well.

Bill - you know I love you! Especially how you call me " young lady":)

Remember, BOLD prayers. And I'll be thinking of you, Denise, banging on the gates of heaven:)

JennyB 03-08-2013 09:38 PM

Re: Chemo Failure #3...now I'm doing what???
 
Chrisy so glad you posted just wish it was happier news. I sincerely hope this chemoembolisation? nuts them hard and you not so bad. I'm off to Bali in a couple of months would love to save a pool chair and sangria for you!

Gerri 03-08-2013 09:42 PM

Re: Chemo Failure #3...now I'm doing what???
 
Chris,

You have my love and prayers...and for good measure I am going to eat some chocolate just as you requested us to do many years ago. You are a rock star and we too are greedy with the need to keep you with us for a very long time to come. Stay strong.

Much love to you!

SoCalGal 03-08-2013 10:44 PM

Re: Chemo Failure #3...now I'm doing what???
 
Sending my fiercest BOLD f'in prayers, along with tons of love, friend. Thanks for letting us know what's going on. We are rooting for you. I know you're fighting hard. Keep it up! And EGBOK - everything's gonna be okay...you are my shero.

PinkGirl 03-09-2013 07:28 AM

Re: Chemo Failure #3...now I'm doing what???
 
Will they allow Barry Manilow to go in the room with you?

Joan M 03-09-2013 08:29 AM

Re: Chemo Failure #3...now I'm doing what???
 
Chrisy,

I'm keeping my figures crossed that the IR procedure knocks it all out and that the SE's are easygoing.

Joan
xo

jaykay 03-09-2013 08:47 AM

Re: Chemo Failure #3...now I'm doing what???
 
Chrisy,

Sending positive thoughts that the TACE procedure takes out the stinking cancer cells. You're far from finished, young lady!

Best,

Janis

Becky 03-09-2013 09:37 AM

Re: Chemo Failure #3...now I'm doing what???
 
Dear Chrisy

I am sorry that you have to get a new plan in place. I am always thinking about you. Huge hugs.

Lani 03-09-2013 12:24 PM

Re: Chemo Failure #3...now I'm doing what???
 
Have you had your mets biopsied and phenotyped ie, ER, PR her2 status evaluated to see what you are now fighting and if it is the same enemy with the same weaknesses?


PMID: 23469980

karen z 03-09-2013 01:15 PM

Re: Chemo Failure #3...now I'm doing what???
 
Chrisy,
We already know how awesome you are and your docs sound just as awesome and determined. I, too, am hoping that this direct hit destroys what it needs to destroy but does not present too many side effects. Stay strong and stay your feisty self as you have all of us holding you up, thinking of you and sending major prayers upward. Get ready for what you have to do next and we will be there will you.

StephN 03-09-2013 02:24 PM

Re: Chemo Failure #3...now I'm doing what???
 
Oh - forgot to ask if you know what drug they plan to stick the tumors with???

Staying tuned and praying hard!

Pam P 03-09-2013 03:56 PM

Re: Chemo Failure #3...now I'm doing what???
 
Aw, Chrissy, what a difficult post to write.Even with this scary news your humor and strength and fighting spirit shine through. I had a liver ablation in December with good result, is that also an option for you? But you won't need it because the procedure you are having will blow those cancer cells to smitherines. You are in my thoughts & especially prayers for next week. Peace, pam

ElaineM 03-09-2013 04:03 PM

Re: Chemo Failure #3...now I'm doing what???
 
Chrisy. Know that I am in your corner cheering you on !!
My fingers and toes are crossed and I will say a prayer that your procedure helps. Take very good care of yourself.
If getting away for some R & R will help go for it !!

Mary Anne in TX 03-09-2013 04:51 PM

Re: Chemo Failure #3...now I'm doing what???
 
Chris, I couldn't help but be angry when I read your post. You are the master student warrior patient here. And this just makes me so mad for you. I've learned so much from you and gained strength when I needed it from your strength. I will join the others in outrageous prayers for miracles in your treatment and exceptional wisdom in those who provide your care. Prayers and love comin' at ya, Chris. May this treatment be exactly what is needed. Please feel all the love and strength headed your way.

caya 03-09-2013 05:19 PM

Re: Chemo Failure #3...now I'm doing what???
 
Chrisy, I am sorry that you have to go through this - but please know that I am praying hard for you, sending big hugs from Canada - I know your Dr. Rugo is a rock star onc., and you are def. her rock star patient...

xoxo
all the best
caya

suzan w 03-09-2013 07:31 PM

Re: Chemo Failure #3...now I'm doing what???
 
Chrisy...sending hugs and prayers to you, my birthday twin (I think!) 7-11. XXOO Suzan
P.S. cancer SUCKS

Mary Jo 03-09-2013 08:41 PM

Re: Chemo Failure #3...now I'm doing what???
 
Dang it Chrisy....NOT what I wanted to read, but read I did. PRAYERS for you, my friend! Prayers for healing......Prayers for PEACE, especially, as you rest in the knowledge that while you only see one set of footprints, God most surely is carrying you.

Love to you.....

Mary Jo

Debbie L. 03-09-2013 11:24 PM

Re: Chemo Failure #3...now I'm doing what???
 
Chris, Although I'm one of those who bug you about your hidden updates, I certainly can't say I'm glad to see this not-hidden one. Or rather, I'm glad to hear from you but of course not glad about the content.

BOLD prayers and many many good thoughts coming your way. Please keep us posted.

Love,
Debbie Laxague

Kim in CA 03-09-2013 11:42 PM

Re: Chemo Failure #3...now I'm doing what???
 
Ahhhh Chrisy,

I'm so sorry that you are having to endure yet another procedure/treatment. Sending love and lots of those BOLD prayers your way dear girl. I'll be thinking of you on Monday, and praying that TACE is the ticket this time (and not too tough on you)

Hang in there,
Kim

Mtngrl 03-10-2013 06:44 AM

Re: Chemo Failure #3...now I'm doing what???
 
Dear Chris,

I'm glad you told us. I'm so sorry to hear what the news is.

As you can see, you are loved and admired here. I love your fighting spirit. I will hold you in prayer.


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