Stable?

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12/13/2013 4:47pm
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Replies: 7

Hi

So my husband had his first scan after 4 doses of ipi... Out of six tumors chest/lung/nodes... 1 in node gone yea!...1 shrunk(do not know specifics yet)... Other  4 plus two on shoulder stable.... When it comes to Melanoma.. What exactly is stable ?? There is still disease ..so in my eyes there is still a problem.... NED would be nothing left correct?? So when the word stable is used... Does one move on to a different treatment... We still have to let ipi work... But I am always thinking ahead ... Just scared but VERY cautiously optimistic!!! 

Thank you in advance for any insight you could give me!

God Bless each of you on your journeys ...

Nancy

jmmm - (12/13/2013 - 6:03pm)

Stable is almost as good as it gets...stable and shrinking at the 1st scans post Yervoy is worthy of a celebratory dance!  It sounds like Yervoy is working, or at least keeping things at bay.   You'll probably be encouraged to watch and wait for a couple of months to rescan (unless there are symptoms that make you think he's progressing).   My husband had tumors show up on his scans 1-2 years after they stopped growing.  A PETscan confirmed they were non-active (or dead), they eventually disappeared.

POW - (12/13/2013 - 6:34pm)

Stable is good-- not quite as good as shrinking--but good. Look at it this way... if your husband was not being treated at all, or if the treatment was not working, you could expect that all of his tumors would have grown during the last 12 weeks. So the fact that they are not growing means that the treatment is working. So Hooray!! 

Phil S - (12/14/2013 - 4:08pm)

I know it's a weird thing when you keep getting the news of stable, and just to monitor thru next set of scans.  I use to get really nervous with this approach, since I was thinking NED was the ultimate status and we should do anything to get there. But, my husband, Phil has several tumors that have remained stable for over 18 months since TIL, and all his doctors are pleased and say we don't do anything unless they start to grow.  Now, I am more accepting of not doing active treatment, but we will be ready to attack any time the scans show growth.   Enjoy the respite for now!  All the Best,  Valerie ( Phil's wife)

nancyg - (12/14/2013 - 5:32pm)

Thank you all for your responses ... Wishing you and yours all the best...

Nancy

G-Samsa - (12/15/2013 - 8:10am)

Hi Nancy--I have achieved the "stable" plateau and have been camped here with 50 percent reduction  of the tumor burden for about 6 months (the view is nice).  I have transitioned from a frequent  immunotherapy diet (Ipi/Nivo) to a meager maintenance phase  booster.  The Drs feel that stable is sustainable-- and point to stable individuals that are going on 7 years with Ipilimumabab  alone.  I keep waiting for the shoe to drop, the wolves to howl or something to give way.... and scans are fearful events.   But the melanoma I'm left to deal with is tolerable and I would gladly accept stable as a (long) life sentence.. We tend to think of stable as a stopping place, a decision point between progression and NED... I wonder if this may just be the new me that my immune  system will guard and maintain..

JerryfromFauq - (12/27/2013 - 1:08am)

While "stable implies that there are still tumors.  The possibility exiists that they are necrotic and so still show  on the scan.  The onkly way to be aboslutely sure is to remove each.  As long as the 'ct shows something the term Ned is not likely to be used.  IN my case, my targeted chemo is a cytoSTATIC  (STATIC -IE stops tumor cell reproduction) and does not necessarily cause apoptosis (normal cell death).  Studies have shown for this drug , if it is stopped, growth is likely to resume.  Some people have been on it for over 10 years for GIST, lymphoma, and Leukemia.  Stable is live, Ned would be great.but I know several people that died within two months of it stopping work.

I'm me, not a statistic. Praying to not be one for years yet.

Landslide45 - (1/22/2014 - 1:02pm)

I share your anxiety over "stable."  My Dad (Stage IV, lung, liver, and spine) has had four treatments of Ipi / Yervoy.  After his third treatment they found approximately 30% shrinkage in his tumors.  He JUST got scan results about an hour ago during treatment #4, and the doctors just said everything is "stable" and that there might have been a small amount of growth on his lungs but they couldn't tell for sure.

 

The great news after his 3rd scan raised our expectations for this one, so we are all feeling deflated and concerned.  Does this mean it has stopped working?  Should we expect growth at the next scan? Does Ipi ever "pause" in shrinking tumors and then start back up?  

 

Would love to hear any others' experiences and Nancy would appreciate any additional notes you might be able to share.  Dad doesn't go back for his next scan until April, and the doctor doesn't really offer up a lot of detail or opinion on what he is seeing other than a vague "looks good." The absence of detail and explanation makes my head spin!