CUP - Cancer Unknown Primary

Hi Patti,

My Mom was recently diagnosed with CUP.  The tumor in her lymph node was found when she had problems with pain in her lower stomach right hand side into her back.  They thought she had a kidney stone but when that was not being resolved they explored further and gave her a pet scan and showed a hot spot near her kidney area int he lymph node.  Confirmed after biopsy that it is adenocarcinomo.  We were able to get my mother into Moffitt for a 2nd opinion and it was confirmed CUP.  She is now on chemo for 6 cycles (gemzar & Taxol)  She has lost alot of weight and seems to have discomfort in her lower abdomen area now.  Pet Scan scheduled this Wednesday to see if there is any additional activity. After her six cycle chemo if there is no change or the cancer shows progression,  she will go back to Moffit and stay there for trial.  This is very new to us and we are confused and frightened.  If there is anything you can suggest or add we would be greatful.  Her Oncologist doesn't have another patient with CUP,  but we told by the Moffitt team that he was giving her the proper chemo treatment at this time. 

Appreciate any input you can give us.

Cocoe

On 9/20/2008 pattib wrote:

Hi,

It's been quite a while since I posted on this site, but perhaps someone has a situation somewhat like mine.

I was diagnosed August 1 2007 with CUP. I had several series of chemos following a biopsy of my liver. I am 57 yrs old.

There were several tumors in my liver, found accidently when I had a CT scan of my lungs - trying to diagnose a persistent cough. 

I've had Cisplatin, Carboplatin, Taxol, and nothing changed in any tumors. Then they gave me two "rests" totaling 14 weeks, and in Feb 08 they told me that one of the tumors grew a bit. They put me on the oral chemo Xeloda and I've been on that ever since. They also "re-looked" at my biopsy and told me that now the best guess was that I have bile-duct cancer.

In the meantime I changed oncologists - same cancer center, but to a Dr who specializes in GI cancers. I've been seeing him for 4-5 months now and things have changed a bit! They don't seem to buy that it is bile-duct at all and are treating me again as if it is CUP. My MA told me last week that there has Never been any growth that she could see in my records or CT scans! When I told her that was why they put me on Xeloda in Feb, she just hemmed and hawed.  HMMMMMMMMMMMMMMMMMM.

My last CT scan they also did a PET scan, which showed nothing. Evidently my first PET scan back in Aug 07 didn't either - while they know it is an adenocarcinoma, it doesn't show any liveliness on a PET the first time either - evidently PETS don't work for me.

Now the plan is to stay on Xeloda (2 weeks on, one week off) at a lower dose (3 500 mg pills 2x/day vs 4 previously) for 3 more months. Then it will be close to a year on Xeloda with no change (assuming no change in the mean time) At that point, they suggest that I just stop treatment. Period. And wait until something grows - with CT scans every 3 months.

This scares me to death, but on the other hand, my prognosis when first diagnosed was 3-11 months and it's now been 13 months and I don't have any real symptoms other than reactions to chemo, which have been mild except for the fatigue. So, stopping chemo for a while sounds good to me. I am scared that the cancer may start to grow again, and get fast as compared to how slow things are moving right now. I'm afraid they might have been able to do SOMETHING else while I am still healthy.

Any thoughts or comments? Any one else have a similar situation?

All the best,

Patti 

 

Hi Patti,

My Mother has just been put on Xeloda.  She will begin today 6 pills a day for two weeks.  She was on Gemzar and Taxol but her recent PS shows enlargement of the tumor in her lymph node and activity in the liver.  She is 79 years old and a fighter but I believe she is beginning to lose hope.  Can you give me your experience with Xeloda?  I'm trying to stay optomistic but its hard when you read so many bad things about CUP. 

My best to you, 

Hi Patti,

 It is Lori here - we talked last year on the CUP boards and had alot of the same things going on. I have been wondering how you were doing and was glad to see your recent response.

I am not sure how much you remember about my situation. I am 39 and was diagnosed last October with adenocarcinoma of the liver of unknown origin found by accident when my gallbladder was removed.

Well...once again we are in about the same boat. I have done 11 months of Carbo, Taxol, Avastin, and Tarceva and now am being told it is time to stop treatment and wait. I had signifiacant shrinkage in my liver lesions right at first but then nothing. No growth but no shrinkage either. So I had my last treatment on Sept. 9th and will have a CT and bone scan on Dec.4th and if all looks the same I will be on the tarceva pill only and continue being monitored for any new growth.

I feel exactly the same as you. Scared that this is going to be the chance for things to get out of hand. I was not given much hope at the time of diagnosis and 11 months later feel blessed to be here for my husband and 2 kids so I want to know that I am doing everything I can to keep this under "control" if there is such a thing. I won't miss chemo every three weeks that is for sure but it was a safety net and now I feel like that is going away!

My doctor told me there is a new "maintenance" drug that is having good results with this type of cancer. It is called Alimpta. Have you heard anything about that? He may consider putting me on it after the first of the year depending on what the scans show so I am keeping my fingers crossed on that.

Best of luck to you!!!

Lori

On 9/29/2008 Lomo1 wrote:

Hi Patti,

 It is Lori here - we talked last year on the CUP boards and had alot of the same things going on. I have been wondering how you were doing and was glad to see your recent response.

I am not sure how much you remember about my situation. I am 39 and was diagnosed last October with adenocarcinoma of the liver of unknown origin found by accident when my gallbladder was removed.

Well...once again we are in about the same boat. I have done 11 months of Carbo, Taxol, Avastin, and Tarceva and now am being told it is time to stop treatment and wait. I had signifiacant shrinkage in my liver lesions right at first but then nothing. No growth but no shrinkage either. So I had my last treatment on Sept. 9th and will have a CT and bone scan on Dec.4th and if all looks the same I will be on the tarceva pill only and continue being monitored for any new growth.

I feel exactly the same as you. Scared that this is going to be the chance for things to get out of hand. I was not given much hope at the time of diagnosis and 11 months later feel blessed to be here for my husband and 2 kids so I want to know that I am doing everything I can to keep this under "control" if there is such a thing. I won't miss chemo every three weeks that is for sure but it was a safety net and now I feel like that is going away!

My doctor told me there is a new "maintenance" drug that is having good results with this type of cancer. It is called Alimpta. Have you heard anything about that? He may consider putting me on it after the first of the year depending on what the scans show so I am keeping my fingers crossed on that.

Best of luck to you!!!

Lori

 

 

Hi Lori,

I just saw your recent message and was wondering if you would share some of your experiences with me.  My Mother was diagnosed with CUP last July.  Her Onco put her on Gemzar & Taxol for the past 2 months but she started experiencing pain in her lower abdomen.  They gave her a PS and she was told that she has spots on her liver now.  The original hot spot was in her Lymph Node between kidneys.  obviously the Chemo is not working.  Now she is starting xeloda for two weeks.  Have you been on this chemo pill?  I'm not that educated on this type of cancer but learning more & more about it as I speak to people who have experienced it.  Not too easy to find.  It sounds like your doing fairly good and I'm glad to hear it.

If you feel  like sharing with those of us who are new at this, I would welcome it.

Thanks,

Cocoe

Hi Lori!

Of course I remember you! There's hardly anyone else that has similar stuff going on that I've heard of in all of this time!  I'm back on the CUP board because they are now back to treating me more like I have unknown primary rather than bile duct. Who knows? I've wondered how you were doing!  I've been on the bile-duct board for quite a while.

I don't know about the drug you mentioned -Alimta- is it an oral chemo??? If you do take it, please let me know what it's all about.

I think they are using the Xeloda a but like "maintainence" or maybe a step-down from "real" chemo! :) Asuming no change by November tho, I'll be off everything.  I never took Tarceva, so I don't know what that's like. Does it have side effects?

This last 2-3 weeks I've felt "yuckier" on the Xeloda, so my attitude towards stopping it has gotten better! It's started to chew up my stomach I think - more of this vague upset, not really nausea, but not pleasant, more acid stomach, more diarrhea for sure!!!  Not exactly fun, although not painful by any stretch! I think our bodies, even if they are taking it well, really need time to recover from any kind of chemo. Even with the risk, I'm counting on my body being stronger if I can stay off of it for a while.

Who knows? We'll see!  Keep your spirits up. I'm now over 2 months past the longest prognosis I was given last August, and I'm still kicking butt! :)

I'm glad to hear you get a bone scan. That's my biggest worry... just how hard are they going to look for problems? If the tumors in my liver don't grow, terrific! but will they be on top of it if it spreads somewhere else???

I'll check in on you here more often - please keep me posted on how you are doing!

Hugs,

Patti   

Hi Cocoe,

 I have not had any experience with the drugs that your mom is on except for the taxol. I also had abdominal pain right at first with it but it went away after a few treatments.

 I was diagnosed in Oct of 2007 and my oncologist sent me to see Dr. Frank Greco at the Sarah Cannon Cancer Institute in Nashville, TN. He has done years of research and trials on CUP - he recommended a course of Taxol, Carboplatin, Avastin, and a daily pill called Tarceva.

My first scan after I started the treatment showed that my liver lesions had shrunk by 50%. After that they have remained the same with no growth. The two drugs Avastin and Tarceva are considered second line treatment and from what I understand they cut off blood supply to the cancer.

I think that the tarceva pill has made the difference with me. It does have side effects but nothing to severe - causes diarrhea and some skin rashes.It is used mainly in lung cancer patients and has recently started being used in pancreatic cancer patients but is considered experimental with unkown primary so in order to get it your mom would need to be in a trial.

I am not sure where you are located but a trip to see Dr. Greco would not be a waste. He really is one of the few experts out there for this type of cancer and I would be glad to give you his contact information. He came up with my treatment guidelines but I am being treated where I live in Alabama -

I wish your mom the best of luck!

Lori

On 9/30/2008 Lomo1 wrote:

Hi Cocoe,

 I have not had any experience with the drugs that your mom is on except for the taxol. I also had abdominal pain right at first with it but it went away after a few treatments.

 I was diagnosed in Oct of 2007 and my oncologist sent me to see Dr. Frank Greco at the Sarah Cannon Cancer Institute in Nashville, TN. He has done years of research and trials on CUP - he recommended a course of Taxol, Carboplatin, Avastin, and a daily pill called Tarceva.

My first scan after I started the treatment showed that my liver lesions had shrunk by 50%. After that they have remained the same with no growth. The two drugs Avastin and Tarceva are considered second line treatment and from what I understand they cut off blood supply to the cancer.

I think that the tarceva pill has made the difference with me. It does have side effects but nothing to severe - causes diarrhea and some skin rashes.It is used mainly in lung cancer patients and has recently started being used in pancreatic cancer patients but is considered experimental with unkown primary so in order to get it your mom would need to be in a trial.

I am not sure where you are located but a trip to see Dr. Greco would not be a waste. He really is one of the few experts out there for this type of cancer and I would be glad to give you his contact information. He came up with my treatment guidelines but I am being treated where I live in Alabama -

I wish your mom the best of luck!

Lori

Thank you Lori for your response.  My Mom is on the West Coast of Florida.  She has been to the Moffitt Cancer Institute and has agreed to be on a Clinical Trial when the time was right.  Dr. Balducci at Moffitt wanted her to complete her Gemzar & Taxol treatments before the trial consideration to see how she would do.  Unfortunately after 5 treatments the cancer has progressed to the Liver.    Her Regular Onco has now put her on Xeloda.  She is 79 years old and obviously her age is a disadvantage.  If you would give me Dr. Greco's info I would be greatful.

So glad to hear your doing well and I thank you for sharing your story with me. 

Cocoe  

Hi Chole,

Sorry for the delay, but when I finished my note to Lori, my internet came down - I meant to reply to you both last night.

Anyway, YES I am on Xeloda now, and happy to share anything I can that would help. I'm 57yrs old so the age difference no doubt applies, but it seems Xeloda is a relatively mild (er) form of chemo. I started with 4 500mg pills two times a day (8 total) back in March. The big side affect for me is the diarrhea. I am susceptible to it anyway, so it's been pretty yucky for me.  I've been on a two weeks on, one week off regimen and by the second week could tell I was getting fatigued - hard to do much without having to rest - even climbing stairs or grocery shopping or what-not. That would lighten a lot during the week "off" and then start all over again.

The big side-effect the clinic worries about is "hand-foot syndrome" and that's where your hands or feet get swollen and itchy, and sometimes so sore you can't walk on your feet or use your hands. I was lucky and did not get this, although last month I got real itchy and my skin peeled a little on my hands. The itch comes and goes and is pretty mild, just annoying.

After so many months of Xeloda, the last few have been more uncomfortable - my digestive system is protesting with gas, diarrhea, bloating, some pain in my right side, etc. Still nothing terribly awful, but not fun. And the fatigue lasts longer and doesn't really go away. We've cut my dosage to 3 pills 2x/day and for the session I just started yesterday, I'm only going to take it for 5 days, with 2 days off in between. Since last week I've sort of felt mild stomach upset most of the time and either don't feel like eating or am starving - nothing in between!  Clearly my stomach is protesting so much Xeloda!

The plan for me is to stop taking it in November, and just go month to month doing nothing until/unless some symptoms appear and I will have CT scans every 3 months. PET scans don't show anything for me - my tumors don't "light up" so they can't tell what's happening with that procedure. Scary for me as it limits how they'd find anything new.

My cancer was found accidentally and shows multiple tumors in my liver, but no place else *yea! They don't know where it came from, but it's definitely metasticised from somewhere else. The have hardly grown in over a year now but have not shrunk a bit in all this time either - and i was on the regular chemo's for quite a few series. Carboplatin, Taxol, Gemcitibine, etc. I survived those well too, as far as side effects, so, please note that I seem to be pretty strong in that way, and that may not be the case with your mom. I HOPE SO! I know I'm really lucky as this was supposed to kill me in less than a year, so, I'm doing GREAT in comparison!

I hope this helps you in some way. Please feel free to ask me anything, I believe that knowing what's going on is the best medicine.

Hugs to you and your family,

Patti 

I too was diagnosed last year and had Chemo only - Taxol, Carboplatin & etoposide. I feel good now and my hair is back.

I found a good site in England but not many visit it. www.cupfoundjo.org  CUP is considered an "orphan cancer" so we (the ones going through it) have to let people know about it.

The stats aren't great but remember they are other people's statistics. The more research the better treatment options are developed.

I have a CT scan next week. They are every 3 months now.

Dianne

On 9/30/2008 arcticnurse wrote:

I too was diagnosed last year and had Chemo only - Taxol, Carboplatin & etoposide. I feel good now and my hair is back.

I found a good site in England but not many visit it. www.cupfoundjo.org  CUP is considered an "orphan cancer" so we (the ones going through it) have to let people know about it.

The stats aren't great but remember they are other people's statistics. The more research the better treatment options are developed.

I have a CT scan next week. They are every 3 months now.

Dianne

 

Hi Diane,

I will try to access the site your gave me.  It's sooo hard to find anyone with good info on this cancer.  My mother was diagnosed in July.  she almost completed her Taxol & Gemzar chemo treatments but it did not work at all.  They are starting her on Xeloda.  The cancer was only in one lymph node two months ago and now it is in the liver.  It sounds like your treatments worked for you.  If you don't mind we asking,  can you give me some info about how it started with you.  Of course I understand if you don't want to talk about it.  Anyway,  thanks for the input I appreciate it and good luck with your CT Scan next week.  

Cocoe