Has anyone ever been told that they would not go NED by their Onc but did anyway?

VaMoonRise · 01-02-2007, 04:07 AM

I have liver mets that are responding fairly well to treatment of Taxol, Herceptin and Tykerb (Lapatinib). The tumors are pretty extensive throughout my liver into both lobes. So far they have been slightly shrinking on and off between CT scans or remaining stable but none have gone away so far. My oncologist says that the chances of me going NED are next to nil. Needless to say I was very bummed out about this as I truly had high hopes of going NED especially with being on these advanced drugs since the beginning of the Lapatinib clinical trials. I have been on this same and only treatment plan since Dec. 23, 2005 with no further progression.

Has anyone ever been told by their Onc that they would not go NED and did anyway? I so much want to hold out hope of becoming NED one day but not if it is a false hope. I would rather come to accept that I will always have active disease than to keep hoping for something that will never come. I guess what I need right now is either some encouragement or a reality check so I can get myself out of this emotional limbo that I feel like I am in. I also wish I had some idea of a prognosis. I know that no one has the answer to this as it varies from one individual to another and with all of the new drugs on the market doctors no longer like to give out a prognosis but I would be happy with just a ballpark figure.

I would really appreciate any input anyone has. Thanks so much ladies.

Love & Hugs,
Nicola

jml · 01-02-2007, 07:44 AM

HI~
How awful for your doc to make such a prediction!! UGH-so sorry you had to hear that. Remember Lance Amrstrong's dx & the extent of his disease, his poor prognosis, his SURVIVAL, disease free for 10+ years! There is NO stage of this disease that someone hasn't survived. Don't lose HOPE!
I have been Stage IV (liver mets) since my primary dx in May 2002. I initially had a single met, but after not responding to the 1st chemo combo, I progressed to "innumerable, immeasurable" big & small lesions.
Ultimately, Taxol+Herceptin got me to NED!! It did take 49 weeks of treatment (3 diff. combos, but it was the 14wks of TH that did the trick). I was NED for a year, but then had a recurrence in my liver, but just a single, very stubborn met. It would shrink beyond detection while on chemo (TH or TCH for an add'l year), but fire back up once I was off.
Finally, my docs decided that I was a good candidate for a partial hepatectomy. Last December I had a liver resection (55%of my liver)-the entire L lobe w/the lesion. My liver has been NED ever since.
It had always been implied that all those "innumerable, immeasurable" lesions were probably still there, however too small to detect by PET/CT. However, a very thorough path report of the lobe that was removed noted that the only disease that they could find was the single lesion. All else had truly completely resolved...not even scar/necrotic tissue from previous mets. The liver is a truly amazing resilient organ! Thank God!!
I've come across a number of docs who have said insenstive, thoughtless things...I think we all have. But put that aside, hold on to your optimism & don't lose hope.
We are changing the Face of BC & no one can predict what the future holds for anyone of us...except for the Big Man UpStairs!

Keep the Faith~

Jessica

ps-have you had a PET scan to determine if all the disease your CT is showing is truly active & not just scar/necrotic tissue?

Andi · 01-02-2007, 10:13 AM

I just can't imagine a doc being so crude! I have just recently received word of my disease progression, so can understand your need to find positive things to cling to and remain hopeful. This is the place to find all of that. There are so many people at this site that have had recurrences and are successfully treating them. And of course don't forget Christine's story, which is truly remarkable. Hang on to that positive attitude, and when you feel you need it to be reinforced, come to this site and you will receive it. My prayers are with you.

Sandy H · 01-02-2007, 11:41 AM

As for myself I have never reached NED however, we really don't know, I am being treated as a chronic ill patient. I am able to be out of treatment and have a good quality of life for 6 years. My prognoses was nearly 0 being IBC. I will reach 6 years in March. I hope this gives you some encouragement that it can be a chronic illness such as others and be kept stable. NED sounds good but some of us don't fit into that catagory but we fit into the "stable" catagory and can live a good quality of life. No one knows how long we have or how the journey will be so we take a day at a time and live it to the fullest. For you that may be hard to do right now but it will come. Sending you a big hug for the New Year. Sandy

StephN · 01-02-2007, 01:20 PM

Dear Nicola -
Yes, I was given a very poor prognosis when my liver mets came on fast and furiously. But a tough combo of drugs (you will see in my "signature") stopped them cold. I reached NED in about 7-8 months (27 weekly treatments of all three drugs). We just kept pounding the mets as much as I could take it, and had good evidence of shrinkage at the first 4-week scan.

Seems to me that your doc may want to consider one of the other new therapies that are still in "investigational" mode. Or substitute the Herceptin for Avastin (which interrupts the blood supply to the tumors). I think you may have only one or the other. But, look up Avastin. There were some good results reported from San Antonio this Dec. Don't know about Avastin and tykerb together, but it is good with Abraxane, which is the reformulated Taxol.

I think the oncs want to be realistic with us, but there should be a way to do that without stripping us of the HOPE of survival we need to buoy us along during these doldrums of long treatment periods.

Seems after a year, if you are up to it, a change to try to make a dent in those liver mets is a good idea.

Also, don't forget to take some compounds like Milk Thistle, Red clover and detox teas which are good for liver cleansing. I think these things aided in my fight and success. And are not antioxidents, which I did not take. Also ate Shiitake and other good mushrooms. Stay off the sugar - it feeds the cancer.

VaMoonRise · 01-02-2007, 01:46 PM

Ladies, thank you so very much for your words of encouragement, for sharing your experiences and for the great advice.

Not so sure that I would have much luck in persuading my Onc to switch up my treatment plan with being on the Lapatinib clinical trial still. I am sure she would say something about time, good results as far as being stable, saving other drugs for future use, etc., etc. I will try to talk to her about Avastin and Abraxane though and see how she responds.

I haven't had a PET scan, the only scans I have had are CT, Bone and MRI scans. Should I be asking for a PET scan at this point?

Don't think that I will ever give up the hope as hope is all any of us really have.

Again, thanks so much Ladies. You all are truly inspirational and the support I find here really uplifts my spirit. I love you all with all of my being.

Love & Huge Hugs,
Nicola

Lolly · 01-02-2007, 01:57 PM

Dear Nicola,

Yes, I think it's a good idea to ask for a PET/CT scan at this point...CT's alone only show the physical structure of an abnormality, the PET shows biological activity. The combined PET/CT show both any abnormality and whether it's "active" or not. Sometimes significant scar tissue is left after a tumor is killed off, and it's not necessarily still active cancer. Ask your onc about this.

<3 Lolly

Brian · 01-02-2007, 06:43 PM

Dear Nicola:

My wife has had two series of tumors in her liver. Our Drs. treated her very aggresively taking the position that as soon as they were able to observe that her Herceptin or other chemo was controlling the tumors they treated the residual tumors with RFA (radio frequency ablation). In the last 5 years my wife has had two such operations and has been NED for a period of 2.5 years after the first operation and now 1.25 years after the second. She is currently NED and we are hoping for good scans next week.

Brian and Lisa

Sherryg683 · 01-02-2007, 09:37 PM

My Oncologist was very positive with me, I had 2 small lung mets. I asked him the first day I saw him if he could get me to NED. He said of course he could. I think now he may have been telling me what I wanted to hear because there was no way of knowing for sure how I would react to chemo. At my 6 week PET/CT scan, it was pretty much gone . I remained on chemo for 4 months (taxotere, xeloda and herceptin). When he told me I was officially NED, I was so excited and he chuckled and said something to the sort of "every now and then I do what I say I'm going to do"..lol..I think that they really don't know how we are going to react to a certain chem, we are all different. If the treatment you are on is not working, do not hesitate to ask for something else. Your Oncologist should be open to discussing this with you, if not..find one that will. You have been stable on this combination though and I would hesitate to change that. I have been NED for 9 months now and am still just as nervous about my future as when I started, I think that just goes with having cancer.. So being NED doesn't make the worries go away, believe me. And YES, I would definately want a PET/CT, that's the only way they can really tell what's going on. I have one done every 3 months. Also as I was reading Jessicas post it made me think of why they don't just go in and remove more of liver tumors, since the liver reginerates so easily. That would seem to be logical to me??? Can anyone tell me why they don't..sherryg683

VaMoonRise · 01-03-2007, 02:33 PM

Brian, thank you so much for the info on RFA. Can you tell me more about the procedure and how many tumors Lisa had in the liver at the time of the procedure? I am so glad that Lisa is NED, please let me know how the scans go. Wishing you all the best.

Sherry, I asked the same question about going in and removing the tumors through surgery and was told that they generally only do that if there are only a few tumors in one lobe but if there are extensive tumors throughout both lobes, which is my case, than they don't do it because it would require too much of the liver being removed. I keep hoping that eventually I will get down to just a few tumors and be able to have this done. If anyone has any other info on this subject please make a post as I am eager to hear all suggestions.

Thanks Everyone so much.

Love & Hugs,
Nicola

StephN · 01-03-2007, 02:54 PM

Sherry and Nicola -

The answer to why I did not have the surgery or ablation is not so simple.
As with Nicola, my liver mets were all over my liver. As they receded in response to the chemos, there were a few stubborn spots. Each scan showed improvement.

Finally there were 3 spots left. The largest and most stubborn was wrapped around one of the main hepatic veins and well nourished. This was not a good site for surgery, so we had to pursue with more rounds of chemo, which worked in the end.

I agree that I was lucky in the chemos being so effective. As the mets receded there was less tumor area for the chemos to target and those last few blasts got the stubborn tumors. (Actually, I was trying to get mentally prepared to have a long fight with more drugs for these last spots, as I did not know anyone who had such good results at that time. But, my treatment team was optimistic that I could get to a complete response.)