Progression in liver - TDM1 Trial info. please - sad

Carolyns · 12-18-2008, 11:58 AM

Progression in liver - TDM1 Trial info. please - sad

Hi All -

Just came from the doctors. Thought it would be a quick in and out and she came by my chair and said to come see her...my scans were back. I thought I had breezed by inScanity this time but now I go into a panic. Now that I am home I am sad and scared. I get angry at myself because I feel like I should get better and handling this stuff. Then I cry...then I come here.

Anyway, it seems that there is a new tumor in my liver 3 centimeters. I have gone from 1 tumor to 7, then to 3, then to none visible and now to 1 again over this past 3 years of mets. So I am going for a PET to confirm.

It looks like TDM1 may be in my future if I qualify for the study and can get into a trial. I think I must have measurable disease and the liver lesion is the only thing measurable.

A couple of questions for anyone on TDM1 - how is the treatment? I am on Navelbine now and have been on Abraxane and Gemzar. I may have to drive a distance to get in a study and I work full time. How are the side effects and do they ease over time or get worse? Are there pre-meds?

Any words of wisdom on TDM1 and words of encouragement are welcome.

Thanks for listening.

Carolyn

doh2pa · 12-18-2008, 12:56 PM

Hi

I am so sorry to hear about your liver mets. I, too, battle them constantly, and they can be very stubborn. I have been trying to get on the TDM trials but my liver enzymes have been too high lately.

I know that Chrissy and Irene in Tampa are on right now. So if they don't respond, try sending them a private message.

Good luck - I think it sounds like an amazing trial and certainly a good next step for you. Please keep us all posted.

Mary Anne in TX · 12-18-2008, 01:15 PM

The trial surely got rave reviews at SABCS! But no matter what you do next, I'm counting on that dumb ol' liver met hitting the road! You responded just like most of us do to that kind of news. Hang on to the belief and love here. Prayers are comin' your way, ma

Rich66 · 12-18-2008, 01:44 PM

Might consider Sir spheres, intra-arterial chemo or:
http://www.livercancertrials.com/

Believe51 · 12-18-2008, 02:00 PM

Carolyns, I am so sorry to hear of the liver progression, this is news no one wants to hear. Please know that you will be in my prayers as you embark on eradicating these nasty buggers. There is great information on the TDM1 out there and I have seen wonderful things happen with the spheres Rich66 speaks of. There are many others of our family battling liver mets that will help to guide you towards healthiness. Please accept this gynormous cyber-hug from me. And Carolyns, if your ears are ringing, it is probally just me praying. Stay strong Sweetheart, we walk besides you!>>Believe51

kk1 · 12-18-2008, 02:28 PM

Hi Carolyns;

of course sorry to hear the news that a pesky liver met is back. Have you tried the Tykerb/Xeloda combination yet? I've been having very good results with this combined with Herceptin. I also see that you live in S. Fla, as do I. You can currently get access to the DM1 trial at a clinic in Davie near Ft. Lauderdale and my Onc tells me that UM should be approved soon as an additional site. The T/X/H combo is currently keeping me in remission but will likely to the DM1 next if it pops it's head up again.

take care
k

Jackie07 · 12-18-2008, 05:08 PM

Carolyns,

From your very first thread in 2006, I learned that you had your first MRM in 1988. Then you had another procedure done to your other breast in the late 90's. And then you found the other stuff.

That makes you one of the longest survivors on the board. You are a proven fighter and yes, you maybe frustrated and tired to get the bad news again. But you know in both your heart and your mind, you are going to take care of the problem. I admire your courage and spirit.

If you click on 'Search' on the gold bar on top of the screen, and then type in 'TDM1', you will find all the previous postings by our HER2 sisters. I am posting here just in case someone else can answer more questions for you.

Remember that you are in our prayers. And how amazing that you are still working full-time! Having lost uncountable jobs during my cancer treatment, I really have to solute you.

Barbara H. · 12-18-2008, 07:02 PM

Hi Carolyn,
I am on the T-DM1 drug. It is been an easy drug for me. It is much easier than Navelbine. Sometimes I am a little tired the next day and have more frequent nosebleeds. I am a third grade teacher and work full time. I am exposed to everything and my immune system functions well. Your liver enzymes will go up. It is a common side effect and they expect it. For me this is a miracle drug. My CEA is currently below one and I have been on the drug for a year and 4 months and am still responding.
I wish the best for you,
Barbara H.

Joe · 12-18-2008, 08:37 PM

current DM-1 Trials in Progress

Regards
Joe

ElaineM · 12-18-2008, 09:05 PM

I don't know much about the trial, but I just wanted to let you know I am sorry about your news. Please try to hang in there and keep putting one foot in front of the other.
Take care.

Shobha · 12-19-2008, 09:20 AM

My prayers for you, Carolyn. I can imagine how difficult it must be to hear this news. But, I have a lot of confidence in the new medicines and trials going on. I will pray that you get the right combination and the liver mets disappears soon.

chrisy · 12-19-2008, 05:26 PM

Carolyn,
First let me say I think there is no reason to be angry at yourself - why should anyone expect to "get used to" the scanxiety and discouraging news. You need to blow off a little steam and shed some tears before you can stand up and go back to putting one foot in front of the other. And you clearly know how to do that - you should be proud of yourself!

If you search for threads/posts on this topic you should maybe search for "DM1" as that would likely get more "hits".

If you find any of my posts, you'll see that I've been on this since Feb of last year. Side effects vary, the most common are low platelets which generally bounce back very quickly. Some also have elevated liver enzymes - and for most people they also recover quickly.

My experience has been my platelets recover nicely, my LFT's have been elevated on this treatment (not before). This nearly got me dq'd from the study and since June I have been on a 28 day cycle instead of the protocol 21 day cycle. I do much better when I adhere to my unproven but effective beet juice and carrot salad regime - even my onc nurse is a believer.

Other than that, my main issue is that a few days after treatment I always get a low grade fever and headache and am really crabby because of it. I think it might be related to the treatment cycle since it seemed to not be an ongoing problem when I got it every 21 days. Now maybe it is a bigger shock to my system and gets my body all revved up. But it is easily managed if I take an ibuprofen. I have a little bit of peripheral neuropathy, but not bad.

So, the drug itself is very tolerable, except by the cancer. The particular study I am in is very intense in terms of follow up, which is good in the sense of they need to monitor things, but challenging because it requires weekly office visits and I have a long commute.

Mary ann is correct, there was much excitement about this at San Antonio - if you can get on a trial, do it!

good luck, feel free to pm me if you have any other questions!

Joan M · 12-19-2008, 05:31 PM

Carolyn,

I can relate to your sadness over bad news, and many others here have been there too.

Have you ever considered radiofrequency ablation of the liver tumors. I had it done for a solitary pulmonary nodule in the lung in August, but the procedure is performed a lot more frequently in the liver for both primary and metastatic tumors.

My first follow up PET/CT scan five weeks post procedure was okay and I'm due for a second follow up scan in early January.

Perhaps local treatment will help reduce the tumor load and give chemo a boost.

Joan

Carolyns · 01-07-2009, 02:09 PM

Hi All,

UPDATE***Well for now anyway, it seems that the PET / Ct and the CT scan tell different stories. So for now I will stay on Navelbine / Herceptin / Zometa. Tumor markers are slowly rising.

Dr. showed me the images of the 2 most recent CT scans. The one in Sept. did not describe any lesions in the liver and December's describes a 3 centimeter lesion. From what we could see the outline of the lesion is extremely vague. We know that I have had lesions in the liver for at least 3 years but sometimes you can't see them in the CT scans. The PET CT shows no change.

So, we continue to watch TMs and stay the course for now with TDM1 up next.

Thanks, Carolyn

chrisy · 01-07-2009, 03:13 PM

Carolyn,

Hmm. Another reminder that these tests are imperfect! Besides finding a cure, my best wish is they they would figure out how to REALLY tell what is going in a non-invasive, non-toxic manner!

So keep hanging in there - sounds like good news, and a good plan to keep watching closely.

Darlene Denise · 01-07-2009, 04:13 PM

FYI: Liver lesions can also be treated with the Cyberknife. Most cyberknife centers now have the protocol to do the liver. I find that many oncs don't know much about the cyberknife and you need to research yourself. I had to go out of state to get treatment at a University Hospital with the Cyberknife for my brain mets.

It is also used for lung and spine.

Hope this info is helpful.

Darlene in Virginia Beach