CUP - Cancer Unknown Primary

Jackie,

I don't even know if I'm replying appropriately as I am having trouble figuring out this site.  I have been in denial for about a month because my Mom has seemed so healthy.  I did contact Dr. Greco and he consulted with my mom's oncologist.  I'm getting scared though.  My mom is taking avisten ?  through an IV every other week and a Tarceva pill daily.  She had been seeming as though she was doing so well.  However, this week she has had diahrea and stomach and hip pains.  I'm so afraid what this means.  I have been putting off taking a leave from my very stressful job thinking I had more time.  I'm scared.  Have you had any of these symptoms or is this the trial pill you are on?

Hope you are doing well.  Thanks for your reply

Jindi

Jackie,

I have had such trouble replying to you.  The messages I think come to me instead of you.  I have been in denial for a month and trying to have faith that God won't take my mom for a long time.  Thanks for your info.  I actually contacted Dr. Greco from your messages and he replied and consulted with Mom's oncologist.  He suggested we could start radiation.  Mom is fit and healthy until about a week or so ago and she started having terrible diarreah and some pains in her stomach and hips.  She is fatigued all the time and just blames it on the medicine.  Now, maybe it is from the medicine.  I don't know and really hope that is what it is.....

How are you doing?  I hope you continue to do well.  Sounds like you are with the right doctor.  It was very nice of him to reply to me and also speak to Mom's doctor. 

 I'm so scared that I will have wasted time I shouldn't have.

Please let me know how you are doing.

Jindi 

PS if Jan is out there I've also been having trouble replying to you.  I appreciate your note and want to get in touch

On 5/30/2008 jindi wrote:

Jackie,

I have had such trouble replying to you.  The messages I think come to me instead of you.  I have been in denial for a month and trying to have faith that God won't take my mom for a long time.  Thanks for your info.  I actually contacted Dr. Greco from your messages and he replied and consulted with Mom's oncologist.  He suggested we could start radiation.  Mom is fit and healthy until about a week or so ago and she started having terrible diarreah and some pains in her stomach and hips.  She is fatigued all the time and just blames it on the medicine.  Now, maybe it is from the medicine.  I don't know and really hope that is what it is.....

How are you doing?  I hope you continue to do well.  Sounds like you are with the right doctor.  It was very nice of him to reply to me and also speak to Mom's doctor. 

 I'm so scared that I will have wasted time I shouldn't have.

Please let me know how you are doing.

Jindi 

PS if Jan is out there I've also been having trouble replying to you.  I appreciate your note and want to get in touch

Dear Jindi,

Once again I apoligize for my delay in replying.  I have had some side effect and this week Dr. Greco is going to take me off the new medication for 2 weeks to give my body a rest and to seperate what may be caused from the medicine, my body, etc.

I am glad Dr. Greco responded to you so promptly - he is a great doctor.  I am not a candidate for radiation so it sounds like you mother is lucky - I have too many lessions and tumors.

Keep me posted and I will do likewise.  Good luck.

JackieB

Hi,

 I have CUP also.  I am 44 with two children (22 & 6).  I was diagnosed 8/2007.  I know exactly how you feel!  I have it in my lungs, liver and across my abdomen.  I have been receiving chemo since 10/07 with no end in sight.  The cancer has not spread and has in fact decreased significantly but the tumors have not gotten much smaller in the last six months.  We just changed chemo three weeks ago to see if that will make a difference.

 Don't read all the statistics on line.  Most of those concern people much older than us.  I think we have a fighting chance and it sounds like you are on the road to recovery!

I, like Jackie (who answered you) found Dr. Greco at Vanderbuilt and love him.  My doctor in Atlanta is following his advice on my treatment.

Hi Jackie,

I am new to this message board and your response to New York Girl was the first messages I have read.

I'm so sorry to hear about the new tumors but, you are in the best place with Dr. Greco.  I am 44 and was diagnosed 8/2007.  I have tumors in my liver, both lungs and across my abdomen.  It is really a lot of cancer.  I found Dr. Greco too,  And I love him too.  My doctor in Atlanta is giving me his recommended treatment.  I know it is a long way to see him (3 1/2 hours for me too) but I think it is worth it. 

I saw him last month and he told me about new DNA testing that will be able to pinpoint the orgin.  I am supposed to have my tissue sent to him.  Ask him about that.  Don't give up yet.

Sorry about your mother.  50 is much too young.  My wife, a couple years older has CUP with brain mets.  Mets were treated but can't treat the CUP because they can't find it.  It is dormant, waiting for the opportunity of a weaked immune system to open the door.  The internet and her first oncologist gave her 18 to 24 months and she is at month 16.

Sorry.  You sound angry still, and rightfully so.  It may be good to talk more about your loss with a friend or even right here on this site.  There is so little information about CUP out there, sharing  your experience may help others.

 Take Care

On 8/15/2008 OVluvsher wrote:

Sorry about your mother.  50 is much too young.  My wife, a couple years older has CUP with brain mets.  Mets were treated but can't treat the CUP because they can't find it.  It is dormant, waiting for the opportunity of a weaked immune system to open the door.  The internet and her first oncologist gave her 18 to 24 months and she is at month 16.

Sorry.  You sound angry still, and rightfully so.  It may be good to talk more about your loss with a friend or even right here on this site.  There is so little information about CUP out there, sharing  your experience may help others.

 Take Care

Hi - I just found your message on CUP from a month ago.  My mother was diagnosed with CUP in July.  She is not a candidate for radiation or surgery so we had no choice but to go the Chemo route.  She has been experiencing side effects.  Are you familiar with a site that has good info on this type of cancer?  I hope that your wife is doing well.  Any information you can give would be appreciated.

Cocoe

On 4/27/2008 JackieB wrote:

Please forgive me for not answering promptly to your message.  I am so very sorry about your mother.

My tumors started growing again 3 weeks ago plus 2 new nodules in my lungs.  The trial I was in last year was a Phase 2, after several weeks of cat scans, blood tests, etc. I qualified for a Phase 1 Trial. The Phase 2 Trial kept me going for a year - then the oncologist gave my body a rest for 4 months or when the tumors started growing. (This rest was extremely important for my body and I realize it now.)

I am 68, my cancer was diagnosed Sept 25, 2006, and the treatments which I explained in my letter (which keeps growing and duplicating on this site for some reason) were hard on me.  I was very healthy and very strong and independent when I was diagnosed.  Last year has taken its toll on me but it gave me 1 1/2 years to be with my great-grandchildren, grandchildren, children, relatives and friends. I would not say last year was 100% quality year. But it had its good moments and memories.

This Trial I am on now requires me to go to Nashville EVERY week (which is a 3 1/2 hour drive from our home one way).  Some weeks it will be for 1 day and some weeks it will be for 3-4 days.  They are hoping to halt the growth of the tumors.  We won't know if this treatment is working for about 4 more weeks, but last week my liver enzymes had dropped a tad which I hope is a good sign.  I will be on the 2 oral chem drugs 2 weeks and then off 1 week.  There are side effects and so far the worse one has been terrible fatigue and intense muscle pain. There are some more that I hope I don't get.(I am also only half as strong as I was when first diagnosed.)

I can not in good conscious advice you on what your 81 year old mother should do.  Once I figured this horrible diagnosis out and realized there was no cure nor was it operatable I went into the Clinical Trial for 2 reasons.  One of course was to buy me some time to get my affairs in order, the other was in hopes I could help them get closer to a cure for this horrible beast.  They will eventually get a cure but it takes these trials to accomplish that and my oncologist Dr. Greco is an expert in this type of cancer and he has been working on this for 15 years.

I will know when the time is right to quit fighting and I will die with dignity with the help of Hospice and my Internist.

I know this probably isn't the answer you were wanting - death is a very private matter, and your mother is right to be concerned with quality of life. But only she and you can make that decision.

I will keep you and your mom in my prayers and please keep me posted.

Your friend,

JackieB

Hi, Jackie, my name is Terri and I guess I'm your neighbor as I live in East Tennessee.  The reason I'm replying to this message is that you mentioned you are going to Nashville for a clinical trial.  I just recently have been referred to Dr. Khan W. Li, a neurosurgeon, for a consultation on the spinal cord lesion that has disabled me since May.  Now let me explain a little bit about my situation.  I'm 54 in August, by the way.  On May 4 this year all my lower extremities went numb.  After weeks of MRIs of the head, lumbar, and cervical (which is how they found the lesion) and a referral to a neurologist, he diagnosed me with Transverse Myelitis, but he was convinced that the lesion is possibly malignant.  So he ran more tests including a lumbar puncture to rule out Multiple Sclerosis, a PET scan, which showed a problem with my thyroid, and a fine needle biopsy of the thyroid.  The FNB indicated a "follicular neoplasm pattern" after which I was referred to a hematologist-oncologist who referred me to a surgeon.  The surgeon removed my whole thyroid on Sept. 13th, thinking that this was the primary cancer source, which turned out not to be the case.  So now, until we can prove otherwise, I feel that I may be in the CUP catagory.  We know that the lesion is in the spinal cord, and my neurosurgeon in Knoxville is wanting a tissue sample or biopsy or both, whatever he can get so we can start treating this thing.  I've been waiting 2 weeks on this referral and I'm hoping there will be no more delays.  I was wondering where you are going for the Clinical in Nashville?  I'm like you, we're 3 1/2 - 4 hours away from Nashville.  With my back the way it is, it's going to be tough to make that drive on Tuesday. 

I know my situation is a little different than yours, but I can totally relate to the unknown primary aspect, and it scares me quite a bit, also my grown children.  I've had to wait so long, it seems to get to this point and my symptoms are getting worse and adding on, like the peripheral neuropathy in my legs. 

Hope you are doing well.  Good luck with all your treatments. 

 Terri in Tennessee

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