Update on chrisy - where's NED????

chrisy · 05-04-2011, 02:15 PM

Hi there her2 family,

I've been hesitating to post this news for many reasons...probably mostly because I didn't want to admit it to myself but also because I don't want to discourage anyone about what I still consider a GREAT drug (TDM1).

Looks like my LONG 3 year ride with TDM1 is winding down. Although of course I knew it wasn't "the cure", you all understand how I hoped it might be anyway

My scans in December showed some questionable areas, which have been (pretty much) confirmed by the latest scan to be progression of one or two of the same old dumb tumors.

I was somewhat prepared for this, and to be taken off the study post-haste; I was not prepared for "let's do another scan in 6 weeks (which will be June 1) and in the meantime keep you on study for the 2 more treatments"!

I always feel like a dope in the presence of my brilliant Dr. Hope, but particularly so this time! I didn't even get clear WHY the move to do one more scan. I'm guessing she's curious as to why after 3 years the canser has developed resistance to TDM1, and/or maybe having a little more info will inform her better about the best options from here. And it wouldn't hurt for her to have me "top of mind" at ASCO

So I find myself in search of input from all my wonderful Her2 family as to what's interesting out there (besides TDM!).

First thought from the onc was Tykerb/Herceptin which is very attractive to me in remission - not as much with active disease

I know a lot of folks have had experience with this, so I'd appreciate your thoughts.

Also, those ladies who have pushed the envelope and pursued localized treatment of liver mets via resection, RFA or other means! Interestingly, Dr. Hope has never been a proponent of this in my case but I caught her thinking out loud about the possibility, since it is the SAME stupid mets waking up.

Lani, I saw your post yesterday re tykerb or herceptin still can benefit after TDM1. Good timing for fraying nerves!

Anyway, I just want to say again:
IF you have the opportunity to try TDM1, I still think it's a great drug. Do it. I was reminded that 3 years is a "long time" and although she agreed when I said "it's not enough", it still is true. It has bought me 3 more years of research that hopefully will yield more answers for us.

Ho hum...saddle up...canser sucks...NED can be a flake.

Love to all
Chris

ElaineM · 05-04-2011, 03:30 PM

First of all I am sorry the benefit from T DM1 is winding down. That said, I also read the article about Herceptin and Tykerb being helpful after T DM1, so if you and your doc think that is promising go for it !!!!!!!!
I have a theory. If cancer keeps coming back in the same place there must be some kind of weakness in that place. Maybe finding out what that weakness is would be of some help. I don't know if it is possible, because I am not a doctor, but I think it might be something to be explored. If that is true maybe it is something that can be fixed or treated. I always wondered why people get mets in different areas than were other people get them. There has to be an explanation why some people get liver mets, some people get brain mets, and some people get bone mets.
The good news is of course that there are no other areas of cancer. So, hang in there and keep putting one foot in front of the other and keep on top of things as well as you have in the past. Take good care of yourself.
My fingers are crossed for you and I wish you all the best.

Barbara H. · 05-04-2011, 04:04 PM

Hi Chrisy,
I am also sorry to hear that your treatment with TDM-1 may be winding down. Although it may no longer be working as efficiently on those cancer cells in the liver, it still may be working to a degree in other areas. It may also be a drug that you could try again once it is approved. Are tumor markers reliable for you? Have they also been increasing? I can certainly relate to your frustration and disappointment.

I would highly suggest that you go on Herceptin and Tykerb. It has been working for me since I stopped the TDM-1 trial in Oct. 09. It took me about two months to adjust to the Tykerb, but I actually find this combination to be more tolerable than TDM-1, considering that TDM-1 is an easy drug. You might also consider to target those spots before you decide to switch to Herceptin/Tykerb. I would try to stay with targeted therapy that would continue to provide you with a quality of life as much as possible.

Don't hesitate to post. We care about you and our thoughts are with you.

Kind regards,
Barbara H.

krisvell · 05-04-2011, 04:13 PM

Chrisy,
Please know that I am rooting for you (like you do so often for us) but not as cleverly as you do. I always smile or laugh when I read your posts.
So from a rather boring sister also named Kris, please know I am right there for you in prayers and support. As KDR's father says, "You're gonna be good". I truly believe this.
Hugs,
Kris....

Lori R · 05-04-2011, 04:41 PM

Chrisy,
Well.....poop. We were all rooting for you to beat the odds with TDM-1 and to post 5 years from now asking whether you should go off of it or not. OK...a slight detour.

There are so many of us on the site that have used localized treatments that we gotcha covered. Questions??? We got answers.

As you know by my signature, we started with standard chemo and kept our fingers crossed. When it returned, like yours...only in the liver. My onc tried for a minimally invasive local procedure (cryoablation) followed by insurance chemo. I wrote a small novel on the cryoablation which was a 1 day outpatient procedure. Very manageable.

After a 2nd cryoablation and the subsequent return ...again (Da Bears)...only in the liver (3 1/2 years later) My onc finally relented and we lined up consults for radiation and GASP possibly a liver resection.

Since the location of my tumor was close to my heart, (I only have had one, but he was a fatty He quickly grew to 4 CM) the radiologist was going to have to reduce the amount of radiation so she thought a liver resection was the best bet. (she said she almost never would suggest that) After more scans to prove to the surgeon that I was NED, he agreed to remove the left lobe of my liver. Around here...ya really have to prove yourself worthy.

So.....March 31st I had a liver resection. I am so glad I did because hiding out behind the left lobe of the liver were 2 infected lymph nodes that they were able to remove. Little devils, no one knew there were there.

We decided no insurance chemo this time. We are going to see if Herceptin minus a tumor can beat this back.

Weird as it sounds, I don't have a strong opinion as to whether the cryoablation was a waste of time. Hey...it knocked the tumor back for about a year at a whack. (but, it did require insurance chemo, so did the tumor stay away because of cryo or just the impact of chemo???) No one can say.

I am soooo hoping to report back in a couple of years that the resection worked for a long, long time. I will have a scan in July.

MissyW skipped all the cryoablation steps and went straight for the liver resection gusto. She has been ned for a couple of years.

Hmmmm....maybe going for the gusto is a good idea. Missy was so supportive and answered all of my questions. I did have a moment of panic a couple of days before the procedure.

PM me or call me for ANYTHING!!!! No question too small. I just wish I had ALL the answers.

As we have all said before...this is the most stressful time. Processing the disappointing news and figuring out the next step. Hang in there, you will be beating back the cancer here very soon.

Lori

Pam P · 05-04-2011, 05:13 PM

Chrisy - You had such a nice long run on tdm1; I'm so sorry to hear it not doing the same job for you now. Thoughts and prayers are with you for discerning the next best treatment to zap those same ol' liver mets one final time. Pam

Kim in CA · 05-04-2011, 05:38 PM

Hi Chrisy,

This is the pitts that you're having to contemplate "what to do next" . Just wanted to chime in to say that the liver resection, as much as I didn't want to do it, was not as bad as I thought.

I too saw Dr. Hope for a second opinion, when I was trying to decide what to do about the spot on my liver. I asked about RFA and she referred me to Dr. Warren at UCSF. After reviewing my scans, he told me that unfortunately I wasn't a candidate for RFA because my tumor was too close to the main blood vessel (can't think of the name now) in my liver. So, resection was my only other option. I think I was in the hospital about a week, and only had to take pain meds a couple of days after I got home. That was in Nov. of 2002, and I was back to riding my beloved horse in no time at all.

Nobody likes to go under the knife, but if you decide to go that route, I can highly reccomend Dr. Warren. He is a highly skilled surgeon with a great personality to boot!

All my best,
Kim

Joan M · 05-04-2011, 06:21 PM

Chris,

You're right, cancer sucks! I'm sorry to hear about the progression. You did remarkably well on T-DM1, tolerating the drug and resisting progression for what seems to be a long time for somebody in our boat. Bravo for that, but now on to continuing to fight the cancer.

Perhaps you could try a local treatment followed by chemo. I've had good success in the lung (and of course the brain). However, the medical oncologists gave me a lot of grief over using these treatments, stressing me out on top of dealing with mets.

Joan

Catherine · 05-04-2011, 06:22 PM

Hey Chrisy,

You are always the one with support and humor. So we are all trying to send you good vibes and look for a magic wand. You are a doll and I hope and pray that your doctors will come up with some pixie dust to fight this crummie canser.

Here's to you and a boat load of pixie dust,
Catherine

Trish · 05-04-2011, 08:39 PM

3 years is indeed a long time to buy while waiting for the cure. It is possible, too, that TDM-1 will work again in the future should you not be cured by your next enterprise! My doctors have never countenanced resection and they may well have their reasons but it is good to hear Lori is doing so well. I had weekly abraxane (a high probability hair loser) with herceptin/tykerb/zometa for about 6 months and TMs went into sharp decline (NED has never shown any interest in me) I stopped abraxane 2 months ago because I wanted to have a chemo break and because I wanted to restart an AI - I will find out what impact that has had next week. I'm sorry you have had this set back but I'm glad there are still options out there for you. Good luck with your decision-stage IV treatment is still very much a work in progress, albeit a frustrating one at times. All the best, Trish

caya · 05-04-2011, 08:41 PM

So sorry to hear this news Chrisy, and I pray the docs can find the next magic potion to zap that cancer!!

all the best
caya

Jackie07 · 05-04-2011, 08:59 PM

Chrisy,

Thank you so much for sharing your experience with us. It's going to help so many of us as well as many other BC sisters.

Take a deep breath whenever you feel like your safety net is gone. It is not. There are many new drugs/treatment options coming out everyday. Your doctors will find something suitable for you. Remember 'positive thinking increases the release of endorphin which helps us fight infection/cancer/depression...'

I'm transferring (electronically

some 'positive' energy to you...

Jean · 05-04-2011, 09:56 PM

Chrisy,
I am sorry the TD1 is no longer working for you. Wishing you peacful hours so that you will be ready to make the best decsion for you. You are such a strong fighter. Sending a huge warm hug.

Jean

StephN · 05-04-2011, 10:20 PM

Well, making it from Dec to now to confirm by scan that something is going on tells me that the TDM-1 does work and slow down the buggers quite a bit.

Are they SURE that it is not some scar area or does the PET light up more than before? I ask since you say it is the same area as previous tumor.

I like Dr. Hope's approach of going slow before making any change.

I am sure you have Pertuzamab on your list. Maybe with Herceptin?

SoCalGal · 05-04-2011, 11:07 PM

"Although of course I knew it wasn't "the cure", you all understand how I hoped it might be anyway"

Oh yes, I know exactly - just exactly - e to the x to the actly - what you meant by that. I was doing the magic thinking, too.

I went to Bloomingdales tonight in search of NED. I can say that NED that flake, was not at Bloomies, but Micheal Kors was there - and was AVAILABLE for me, at hardly any cost, unlike that NED. I did not need a scan, a blood draw, premeds, postmeds or ANY meds for Michael...one small plastic card and he was all mine!

Hang in there my friend, I don't have any answers but am asking a lot of the same questions. Brain scan on Sunday - already having Scanic Attacks. Sending love and reassurance that we will get thru this somehow!! Because we must. xo xo Flori

michka · 05-04-2011, 11:49 PM

Chris. I am so sorry the met came back. Plenty of things go through my head. I am not sure it helps because it is not an easy time for you but I will share them anyway First of course I am very sad because after 3 years I was hoping you were now safe with TDM1. BUT if you only have one met in the same place, it makes me think that TDM1 protected you in the rest of the body, even the liver. I would first ask the same question as Steph: what does the Pet Scan say? Is the diagnosis sure? Did you also have a MRI of the liver? If it confirmed activity in the same one spot, is it possible to zap it out with first RFA or Cyberknife and then add a targeted combo. But I discovered that it is not always possible because it depends where the met is and that sometimes you have to go for resection. But that is also manageable. But not everybody is convinced to go for "zapping". The size of the tumor is also important. It cannot be too big to zap it out with a not too invasive method Do you know the size? If it is the same stupid met after a long period of three years it seems more positive. Same situation as Lori. Did markers ever show something for you? I figure you would have said so if it was the case.
Chris, I hope you will have all this figured out fast with your next exams. I like the attitude of your onc not to go too fast and conclude. I am sending hugs and I also will keep my fingers crossed. Michka

Sheila · 05-05-2011, 06:15 AM

As Brenda would so eloquently say CRAP ON A CRAPSTICK...sorry Brenda, beat ya to it. Is there anyway that you could get the Pertuzamab added to the tdm-1? I do like the fact that Dr Hope..(what a great name for a Dr in her profession) is giving you another scan before pulling the plug on the TDM-1....NED has been eluding me for 8 years...i think if I ever find him, I will strangle him! Truly though, there are so many options out there, and you have an amazingly smart and talented ONC. so you are in good hands....we got your back Chrisy girl.....H2B's rule!

Sending lots of love, hugs and prayers that this bump in the road will be behind you in no time.....

Mary Anne in TX · 05-05-2011, 07:23 AM

Hey Chrisy,
Of course 3 years isn't enough....not nearly enough.
Yes, your onc is a brainiac, but she happens to also have a tough, smart, super hard headed patient too.
The trial I got thrown out of is getting really great reviews, but I don't have personal info anymore.
Chris, could you do the resection thing before you get off the TDM1?
If all these tumors we get can be different, maybe once these two pesky ones are gone, your body would continue to respond well to TDM1.
As you well know, I don't know anything for real. I will admit that I too had you cured in my mind and heart. For you and for me.
Chris, you're working with the best....just don't forget that you are an awfully smart cookie yourself. You've sure got my thoughts and prayers for a quick remedy.
much luv, ma

Emelie B · 05-05-2011, 07:45 AM

Well, I totally agree with Shelia. Crap! I know we all had hoped you would be the one to find that magic, dare we say it, cure?
I am sure you and your onc. will come up with a game plan that will work for you once again. As the other ladies have said, there are many more options available now to us.
I hope you can find some peaceful thoughts in the days to come and know that we are all thinking of you and sending positive thoughts and hugs.
Please keep in touch with us and enjoy this beautiful Spring.
Emelie

Ellie F · 05-05-2011, 07:52 AM

Hi Chrisy
Just wanted to say how sorry i am that it's back. I knew it wasn't a cure but hoped anyway! I wanted to support Sheila's suggestion about adding pertuzamab as this is in trials here and my onc reckons it is good.
Have you checked if there is a trial for this near you?

Ellie