3 months after ending Cisplatin/Taxol/Herceptin, liver tumors came back

julierene · 08-11-2006, 11:24 AM

3 months after ending Cisplatin/Taxol/Herceptin, liver tumors came back. I did the weekly treatment for 6 months. After only 3 months, the tumors in my spine and liver were all gone. I think there were 9 total. Then, I went on Herceptin alone for 3 months, and at my last scan there is 1 small tumor back in the liver. I don't know what they will do next. Does anyone have any experience they can share? I was thinking I would have about a year before it came back. I am SO disappointed that I seem to hit the bad side of statistics almost every time. I guess I can be glad I got a complete response, but how good is that if it comes back so fast?

saleboat · 08-11-2006, 12:09 PM

Julierene,

I don't have any words of wisdom, but just wanted to let you know that I read your post and feel your frustration. We need a cure, and fast!

I hope you can find some peace and relaxation this weekend.

Jen

heblaj01 · 08-11-2006, 01:22 PM

Julerene.

I do not have a direct identical experience to report to you.
However in a case where treatment was started with Herceptin alone it resulted in a strong response lasting only 2 months, before fast deterioration of blood markers resumed.Then,the onc added Vinorelbine(=Navelbine) . This caused a detectable response after only 2 weekly treatments.
Vinorelbine+Herceptin was selected because of a high response rate in trials (over 60% compared to about 30% for Herceptin alone). An other factor in the selection was the relatively low side effects of the combo which mattered in this case due to the weakened condition of the patient.
An other combo may have an even higher response rate (around 80%) based on phase 2 trials: Doxil+Herceptin. Doxil is a low toxicity version of Taxol with probable higher efficacy & somewhat higher side effects than Vinorelbine+Herceptin.
I don't know if this combo is available outside clinical trials.

But before considering these or other options make sure the diagnostic of the liver recurrence is not a false positive which is possible in the case of small single apparent lesions. Was the scan confirmed by markers or symptoms? Could it be a cyst or a scar? If necessary a PET scan may clear up any doubt.

judiek · 08-11-2006, 04:52 PM

Julierene,

I'm sorry to hear this news...amazing how fast this disease can return. I have been on non-stop chemo since jan of 2004...I have never been NED...it just keeps growing on chemo. My liver mets just won't lye down. I pray that your next tx plan puts you in a long remission...it still can happen!!

Judie

Ceesun · 08-11-2006, 04:57 PM

Hello I am rather new to this site but want to tell you that I was stage 2 with 2 positive nodes and since last Sept started herceptin alone which was 20 months after treatment. Learned last month that I have 2 small lung nodules and will be in a trial with herceptin, xeloda, and navelbine. My oncologist said just because there is a recurrence it does not mean the herceptin isn't working! Hang in there, girlfriend. Cathy

julierene · 08-11-2006, 11:11 PM

I am so glad to hear from you all. I will probably get a PET scan to make sure that this is indeed a liver met. I don't know for certain yet that it really is. But given my history, I wouldn't think it could be anything else. I think a cyst would be awesome, but a fat chance at that. The tech just had that look on his face and I knew it had come back. He said "looks like it to me".

I know this is SO vain, but do these treatments they have like the ones mentioned above, cause hair loss? I just started a new job!!!! UGH!

StephN · 08-12-2006, 11:30 AM

... that the "spot" on your liver scan is not a new lesion.

I want to make a few comments on this situation.

First of all, TECHS are not supposed to offer any opinions on what they see on scans. Usually they are in another room behind a window and only the assistant comes out to help us off the table and out of the room.
I would not put any stock in what the tech says. You have to see your onc for the official results.

Secondly, is the spot in the same place as one of the old lesions, or a new area?

Thirdly, we CAN get cysts in our soft organs or around them at ANY TIME of our life. My husband developed a small spot in his left lung over a year ago and the scans show no growth so they assume a cyst. A chest x-ray one year prior did not show a thing in that same place.

Fourth - they MUST do a PET scan to confirm, but maybe after a month or so and you have the liver checked again for changes in that spot.

As a nearly five year survivor of raging liver mets, I have had control of this cancer for over 4 years with only Herceptin. I had one little stable spot about 5-6mm on my liver scans for a long time and it did not show on the last one. So, these things CAN come and go without treatment if they are not lesions.

This is a freaky disease and I know you have a family history to add to your concern. But, try to think in terms that it may be YOU that breaks that viscious cycle with the help of the new treatments. I am sure you can do it!

P.S. Navelbine will thin your hair - don't know about Xeloda.

chrisy · 08-12-2006, 01:55 PM

Julierene,
I can't really add to the comments that have already been offered - especially those encouraging you to not panic until you have definite information that this is progression. Although I know from experience this is easy to say and hard to do! Take one step at a time, find out for sure what you're dealing with. I know how frustrating it is to feel like you're on the bad side of the statistics. Try to think of it this way - you will be the one that survives this thing, statistics be damned!
Hang in there.
Chris

julierene · 08-12-2006, 10:58 PM

I think it is the same spot. So I guess he wants to rule out scar tissue. One thing I didn't realize, was that we hadn't done a liver MRI since my Stage 4 dx in December. So for 9 months now, we have been using the PET for my liver and rest of my body. The only thing he doesn't do is check for brain mets. I am not sure why he doesn't like to scan there... he just says that the symptoms are good enough to not have to worry about doing brain MRI's all the time. I've had 1 back in December because I pushed him on the topic, not knowing for sure that I didn't have brain mets.

Turns out my bone scan looks same as last time with no new hot spots. My CA markers went down from 12 to 9 since March. In March, I had NED. In May, I stopped the chemo and did Herceptin every 3 weeks. Now, 3 months later, we did a routine scan to see if the Herceptin is working. What I didn't realize was that the complete response was based on PET scans. It's possible that this is just residual scar tissue from the masses that were initially there. I have my doubts, but I can at least hope for now. I would be thrilled to have a false positive!

StephN · 08-13-2006, 08:20 AM

These can be very problematic.
When I was looking like NED was near when beating back my liver mets, my med onc said he wanted me to have 3 more weekly treatments of the Taxol/Navelbine/Herceptin then we would do the PET to corroberate the CT scan. By the time we did the PET there were NO hot spots and my liver was pronounced free of tumors. There were a couple of places that were then read as scars, as there had been one especially stubborn lesion on a main hepatic vein. This finally reduced to a tiny spot and has not been visible since about 3 months after that PET.

Now for my BEST "false positive" story. You may recall that I had a brain surgery in January. The brain MRI and brain PET were really bright in the old tumor bed where a large tumor had been gamma knifed a year earlier. The tumor board was really sure that the spot had all the earmarks of tumor regrowing. The tissue removed was "100% necrosis" (meaning NO tumor), to quote my brain surgeon. If the bright spot had been smaller we would have waited to check for changes in a month or two, but it was quite large and they all panicked - causing me to let them rush me into the surgery.

This disease will teach us patience, and we HER2s tend to learn that THE HARD WAY! Spots appear, we freak out, our emotions get the better of us, we can't sleep, etc. Eventually it does get easier, if, like in my case, the spots are manageable or turn out to be false positives.

RobinP · 08-13-2006, 01:28 PM

JULIERNE, I agree strongly with Steph that this new spot may very well just be scar tissue. I will be praying all turns out well for you and the PET scan is clear.

heblaj01 · 08-13-2006, 05:46 PM

Julierene,

If you decide to get a PET scan for the purpose of proving that the small single spot is a false positive you may be a reasonable candidate for asking a double scan a few hours apart to avoid almost certainly the possibility of a false positive by the first of the 2 scans.
For more info on this see this post:
http://her2support.org/vbulletin/showthread.php?t=24868

anne · 08-14-2006, 07:14 AM

StephN,
Please tell us once again what combo you got to treat your liver mets. I remeber you saying it was very innovative 5 years ago.

Thanks,
Anne

Brian · 08-14-2006, 12:01 PM

Dear Julierene:

Be sure that just because a liver met has returned, it does not mean that you are without options. First, remember that if you have had liver mets in the past there may be some scar tissue that is showing up on your scan. Often this is the case. There is only one sure way to know which is via liver biopsy. My wife has had two of those, and although they are not pleasant they will give you the information you need.

Secondly, you may want to see if your Dr. will allow you to have RFA (Radio Frequency Ablation) to the tumor. Since the tumor is small and isolated it could be RFA'd and you would be NED at completion. My wife has had two liver surgeries both of which included RFA and excision. In both cases she had long post surgery remissions.

At this point my wife is NED and she is in her 15th year of survival, 5th post Stage IV diagnosis.

Also different types of Chemo are available.

Good Luck and God Bless

Brian and Lisa

StephN · 08-14-2006, 12:25 PM

Hi -
I almost missed your question posted here.

My treatment consisted of a combination 3-pronged attack to the tumors. I had Navelbine, Taxol and Herceptin. One drug followed the other with Herceptin always being the last one.
If you want more specifics such as the dosing, I can maybe find that in an old onc's note.

Most oncs now would rather use two targetted drugs plus one chemo for hard cases rather than the two hard chemos I had together. They say because of quality of life, but my quality of life was not that bad on this weekly combo.

Sherryg683 · 08-14-2006, 04:41 PM

I'm sorry to hear about this, I would want a biopsy if all possible. There is a recent study done (I will try to find the link and post it) that PET scans have 58% rate of false positives. I was diagnosed lung mets with a PET, no biopsy. I don't have too much faith in them after this study. Just as soon flip a coin...sherryg683

doh2pa · 08-17-2006, 05:07 PM

Hi Julierene,
I just had a very freaky experience and I had to share. I come on this site on and off and have not been on for a few months. I too had liver mets, was treated for 6 months with carbo, herceptin and ixabipelone (a taxane like drug). The 4 spots on my liver disappeared according to my scan in May. I am also getting a vaccine. So the vaccine trial I am on required a scan in August and the CAT scan showed a new 2 cm spot on my liver. I was so upset. Just like you I felt like 6 months of hell for a short 3 month remission. I am scheduled for a PET scan next Thursday, but am fearing the worst. So here's the freaky part. A good friend of mine recently lost her sister to lymphoma. She said it was so hard to loose her and then have to make all the arrangements for her funeral without knowing what she wants. This friend of mine is very practical and she begged me to write down what I wanted when the time came. So tonight, I went on this site and searched on planning my funeral and your lovely poem came up. It touched me deeply. Then I searched on liver mets and your picture came up again. And you are going through the same thing as I. I am seeing my onc after the PET scan on Thursday and then seeing another onc the following week for a second opinion. Since we are both going through this at the same time would you consider trading e-mail addresses? Mine is doh2pa@comcast.net. I think we might be able to help each other through this.

Donna from PA