Cup

Hi.  Last March, after a series of small seizures, a MRI found my wife (54 yrs) had 5 brain tumors.  The largest was surgically removed and the others treated with Gamma Knife.  Biopsy, PetScans, and a month worth of investigation found no other cancer, therefore she was diagnosed with malignant metastatic brain cancer, unknown primary.  After the surgeries she underwent 30 days of WBR, no chemo.

She is coming up on one year, symtom free.  She still takes her Keppra for seizure control and still drives, and is totally independent.  We live one day at a time.  She is involved with Yoga and made a lot of changes in her life to slow the tempo.  We plan family outings now and make time for ourselves.

The statistics are not good.  There is no cure.  But as you will hear and read over and over, they are someone else's statistics.  Yours can most definitely be different.  My wife is one of the 25 percenters and we plan to be one of the 10 percenters, too.  Get yourself a good team of doctors - make sure they are positive thinking but be realistic and make all the appropriate plans early so you have one less thing to worry about later.  Stay active, stay informed but most importantly, stay living life.

Keep writing with your progress.  It is good therapy to share.  Good Luck!

And you will be a survior!!

Just before the birth of my youngest daughter, my wife complaining of extreme back pain, was found to have a large cyst growing on her ovary.  The ovary was removed.  This was, is the area the doctors checked first to see if her cancer was related to that but apparently not.  They found a blotch on her pancreas, but it was not distinquishable and didn't warrant a biopsy.  She was once a heavy smoker so the thought is her's is lung cancer, common with brain mets.  Ironically, she quite smoking 3 months before the symtoms.

Hang tough.  You guys, unlike us here, have great access to medicine.

Michael and Lesley

I just read your message.  I too have CUP and I discovered it March 2007  I was told I had an enlarged lymph node in my neck.  I have had chemo and completed radiation of my neck in December.  I just had neck/chest/abdomon CAT scans and everything looks ok.  I responded to chemo/rad and now it is now March 2008 and no further developments.  I can only pray. 

Hi there

At last I have found a 25%er. I am having my last chemo on the 28th of this month and another CT scan to see it's effect.

They may do radiation to the affected lymph node after that.

I discovered the enlarged lymph node in June but it took till September to get it biopsied. and then December till it was diagnosed as CUP. They had to rule out everything else. I was afraid that I had wasted precious time but it looks like everything is going in the right direction.

Thanks for the encouragement

Dianne

Hi New York Girl

it is encouraging to read about your progress.

My CUP is in my abdomen so I am looking forward to my CT scan to see progress.

They are talking about radiation after the chemo. I have asked about at PET scan if they cannot see the tomour on the CT scan.

Keep fighting girl

Dianne

Hi Dianne,

 I'll keep praying for you too!  I discovered the enlarged lymph node in my neck last March and I'm still here.  As you know, when you read about CUP it is not to promising.  Please keep writing as I'm interested to hear how you are doing and how you respond to the chemo. 

 New York Girl

Hi!

I was diagnosed with CUP Aug 1 2007 and was treated with chemo. They'd found some tumors in my liver accidentally and I had no symptoms. First I was given Gemcitabine & Carboplatin with no change, and then Gemcitabine and Taxol, again with no change. I tolerated both of these programs pretty well. Lost my hair on the second one and got very fatigued, but no pain or nausea.

With no growth nor shrinkage, they then decided to wait 6 weeks and do another CT scan. Again, no change, wait 8 weeks. The CT scan at the end of Feb showed that one of the tumors grew 1cm, so this time they are giving me oral Xeloda. They chose this because with such a long time with no growth (or shrinkage!) they wondered again what the heck I had! I wondered, certainly, and pushed that they look at my liver biopsy again.

They did, and the GI pathologist said he "thinks" it might be bile duct cancer. My oncologist called and told me that, but she's been out of the country since so I don't know any more about what that might "mean". It's another very rare, very nasty cancer.

So, I've been trying to get a 2nd opinion organized with the Mayo Clinic since they are specialists in cancers like bile duct, and there is a branch here in Arizona, but so far no luck. I will lose my insurance as of April 1st, so that's going to make it very difficult to go outside for a consult. I'm not giving up, I just got my records packet mailed to me from the cancer center and we'll see where it can go - (somewhere they don't charge you $2400.00 upfront to look at it if you don't have insurance).

Given that I'm back on an expensive chemo - they told me the pills cost $2400 for two weeks - it won't take too long before I will have "spent down" enough that the state will have to put me back on Medicaid. As I mentioned in another message board, I got on SSDI (disability) and that disqualified me from medicaid insurance - too much income! :-) At least that's the current plan. My private insurance is gone, so it's my only option. Meanwhile I can keep going to the cancer center as they will not refuse treatment and will bill me and work with me.

In about a week I will meet with my oncologist again and find out if they are still considering me CUP or if I'm now bile duct cancer. Each CUP is so different. Some show, some don't and they can be in any part of the body. Congrats to those of you who have had success with your chemos!