Carcinoma of Unknown Primary-Funding for research?

Hi Patti,

I did not get a private reply - I am not sure how that works so I will just post on here. 

Yes - My surgery was totally unrelated to my cancer. I had awful pains and thought I was passing a kidney stone. Went to the ER and found out it was gallstones. At that time I knew I had spots on my liver from a previous ultrasound but was told they were benign - The surgeon did the liver biopsy while he was removing my gallbladder and the pathology came back as metastatic cancer. I went immediately to an oncologist. 

So my oncologist here started trying to find where the cancer in the liver was coming from. After all of the scans and bloodwork did not show any primary source, he was at a loss and told me about the doctors in Nashville. So I went to see Dr. Greco in October and he is the one that came up with the treatment plan that I am on. He is one of the  2 doctors I told you about in Nashville that have been doing research on Unknown primary for years and years. If you do any searching online you will probably see their names listed as sources in most of the articles out there.

I have had my first treatment - my second will be on the 20th - I have been taking the tarceva pill since Nov.1st. I am having a few side effects from the pill - rash and upset stomach. My scalp really hurts - I think that means my hair is about to go.

 How about you? How are you doing? How many treatments have you had and what side effects are you having? Has your unknown primary spread to the liver only? I am like you - I have tons of questions. Please fill me in on what you have been told by your doctor and how things are going for you. 

Oh - I have been told there are around 14 lesions on my liver. Most are small but 2 of them are greater than 6cm.

I hope you are doing okay and you have been in my thoughts. This whole ordeal just STINKS bigtime!!

Stay strong and I hope to hear from you soon.

Lori 

Hi again, Lori!

I clicked the button that said "send private reply" and it gave me a message form, but apparently it didn't work.

I had 3 (of 4 planned) chemos with Carboplatin and Gemcitibin (sp?) starting in Sept. I was diagnosed officially on 8/1/07 but they spent most of August looking for a primary, getting another CT scan, etc. I had an entire body PET scan and a brain MRI too. Nothing showed up.

Those first 3 chemos were pretty uneventful. A little acid stomach, but that was about it. Some fatigue.Then they took a CT scan and it showed no growth, no shrinkage either, but no growth so they said they would keep Gemcitibin in "the back pocket" as it seemed to at least delay growth. They wanted to try Carboplatin with Taxol, so I got one treatment of that in the middle of October instead of the 4th (2 series of 2) of the first set. Like you, I have 3 weeks in between chemos on this formula. I got sicker on the Taxol/Carbo. about the 3rd day after I felt like I had the flu and then my bones and muscles really started to ache. That lasted about 3 days, tapering off pretty well. Then ok for a week

I went home to the Midwest for 10 days and saw all of my family and an old friend. While I was there, my hair all fell out. Well, most of it. I have some fuzz left! That was weird!  When I got back to Tucson in time to take a 2nd dose of the Carbo/Taxol on November 1st. This one was tougher in that the bone/muscle pain lasted longer - more like 5-6 days, tho only at night after 3 days. I clearly lost some energy though and am more fatigued now than before this all began.

As of Wed/Thur I am feeling FINE and back to "normal". I have the next treatment the Monday after Thanksgiving - assuming they still want to stick to that after the next CT scan which is right before Thanksgiving. We'll see what it shows. They hope it shows shrinkage. Obviously so do I!!!

Everyone is pleased I'm doing so well. I have no pain other than what I mentioned and have a good attitude. The hair thing got to me for a while, but I'm dealing with that ok now. HATE scarves, but like the wig even less, so I pretty much just throw on a scarf and forget about it.

I'm still working at my old job - but part time now. In fact I'm LATE! gotta dash. Tell me more about how you're doing!

Oh, I have 4 masses, none over 3-4cm. (I think that's it, I'll check)

Hugs,

Patti

Hi Patti -

I am about to leave for treatment number 2. My hair is coming out in big chunks so I figure after this it will be gone. I was thinking that the hair loss would not bother me but now that it is falling out I am thinking it is going to be a little more traumatic than I expected!

My side effects from the first treatment were pretty much the same as yours. Aches and joint pain with the 3rd day being the worst. I feel fine now - just get tired more easily. I am hoping this next treatment is the same - a few bad days then back to normal. I am still working also - my company has been great. They are letting me work when I can. The tarceva - that is the pill I take- is making me really tired and has given me a lovely rash. My face looks like a hormonal teenagers.

Oh I have been meaning to ask - Did you have a port put in or are you getting an IV each time?  

Let me know how the scans go - I hope you get good news!

Well - I better run but have a Happy Thanksgiving!

Lori 

Thanks! Hope you are having a good Thanksgiving too! We had an early T-day when I visited my family in Minnesota late October, so I'm not doing much today. Actually I'm roasting a turkey! I love the whole process, so it's my "fun" for the day. Turkey, stuffing, mashed potatoes & gravy - the works!

I don't have a port. They do an IV each time. My doc suggested to do it that way as long as they can find a good vein. She said she was more concerned with avoiding infection. Given that I have a history of coughing/breathing probs, I think it's probably wise in my case. What about you?

I had my CT scan yesterday, and am scheduled for a Dr. Appt, and chemo on Monday - starting at 8am! (ugh, I'm not a morning person!) I'v VERY anxious to hear what the scan shows. I'm praying that things are shrinking!

I'm a lot more tired too. This time it seemed longer than last time, but then I'm not sleeping as well. My doing - I need more self-discipline to get to bed earlier I think!  Are you doing much about diet, etc?

Looking forward to hearing from you again, all the best!

Patti

Hi Patti -

How did everything go? I hope you received good results from your scan!

I had my treatment on the 20th and it really wiped me out. The avastin was added this time so I am not sure if that was what did it - but I have been in the bed since last Tuesday. Today is the first day that I feel human again. I did get the good news that my liver enzymes which have been so elevated have dropped by half. My doctor thinks that he feels it is a sign of shrinkage. I don't get a scan until the end of December but I am hopeful that the bloodwork showing change is a positive sign!

I do have a port. I don't have good veins - the one decent one that I had was a mess because of all the testing and procedures I had done prior to treatment so my doctor wanted me to have a port placed. It is not to bad - I forget it is there really.

I am having a heck of a time with my diet. I have acid stomach and runny bowels and just can not find any food that works or even tastes good. I am living on cup of soup and gatorade. How about you? Are you having any problems? Luckily for me I have weight to spare.

Well - let me know how everything is going. I am keeping my fingers crossed that you got good news and you have shrinkage!!

Hope to hear from you soon! Lori

Hi!

I'm sorry to hear you weren't feeling well. Has that gotten any better since? I had acid stomach and lots of gas & loose stools, but never lost any appetite. (I have PLENTY of reserves, so I could have stood some loss of appetite!) I'd have a few days of not being all that hungry, but that's it.

My CT scan results showed no growth... no shrikage either. They say this is "good" news, but they haven't ever "grown" so I find it very frustrating. My doctor wants me to wait 6 weeks now w/o any chemo and do another scan in January. I'm grateful to have a break from all the chemo, but I am also wondering if ANYthing will shrink these things. I want a remission, not just status quo, I guess. It feels too much like just waiting around for the masses to grow so we can try something else. Not my style!

I also found out that I have MORE than 4 masses in my liver. This ticked me off as I was told that I had 4 and what their measurements were. Now my Dr. said "oh you have more than that, they just measured the four" and she took me in to see my scan and pointed out a lot of fuzzy lighter colored shapes in my CT scan. So, I guess no one knows how many I have! You'd think someone would have mentioned that! 

I'm a bit discouraged at this point. I just can't get "happy" about no change. I guess I need to find out more about what that could mean.Everyone acts like I should be pleased, but for me, right now anyway, it seems to be just more uncertainty about my life, and that's hard to take. 

I mentioned the study you are in to my Dr. who knew about those trials, but she said that I would have to pay for the extra drugs. She said if nothing changes in January's CT I might consider a trial, but that's all she said at this point.

I dunno, I am going to put my mind on the holiday's and spending Christmas with my daughter and try not to worry about anything for a month. I sure hope YOU get some great shrinkage in your next scan! Make sure to keep me posted!

Happy Holidays!

Hi Ladies (Patti & lori) ~ I hope you don't mind me reading through your thread.

I am currently caring for a 50 yr old family member with the same diagnoses. He has had the liver mets for at least 5 years (some ultra sound findings were ignored by his liver specialist back then). The PET showed up no primary & the liver tumours are starting to grow more rapidly now. The biopsy suggest upper GI or stomach as a primary source. Similar to your ladies he has 6 tumours some close to 4cm.

I feel so frustrated - he saw his specialist yesterday who basically said she isn't willing to do anything yet until they carry out further scans (with a different isotope - I think it's MIBG) + an endoscopy to find the primary.

How long did you ladies wait for ANY kind of treatment after finding the liver mets?

I hope you are both keeping as well as can be expected. 

On 12/14/2007 Nealie wrote:

Hi Ladies (Patti & lori) ~ I hope you don't mind me reading through your thread.

I am currently caring for a 50 yr old family member with the same diagnoses. He has had the liver mets for at least 5 years (some ultra sound findings were ignored by his liver specialist back then). The PET showed up no primary & the liver tumours are starting to grow more rapidly now. The biopsy suggest upper GI or stomach as a primary source. Similar to your ladies he has 6 tumours some close to 4cm.

I feel so frustrated - he saw his specialist yesterday who basically said she isn't willing to do anything yet until they carry out further scans (with a different isotope - I think it's MIBG) + an endoscopy to find the primary.

How long did you ladies wait for ANY kind of treatment after finding the liver mets?

 

I hope you are both keeping as well as can be expected. 

 

 

 

Hi!

Of course not, please join right in! I'm just responding to the idea that your guy has had liver mets for 5 years! and NOW they are growing. I really appreciate how that's not good news, but right now for ME, 5 years sounds like a lot.

It was about a month (August) that I waited for test results, etc. before they decided to give me a first run of chemotherapy. It was a Long month!

Today, as I sit here about 1/2 way through my 6 weeks of no treatment before I can get another CT scan, that month doesn't look as bad. Waiting is a pain. The good news that mine didn't grow last month and having this break is doing one good thing - I'm getting some energy back! It was not easy to realize how tired I was until I started feeling better.

So maybe those waits aren't ALL bad. Build up your energy, rest, eat good food, do all the things they tell you to do because once you are in treatment, it's really tough on your body, soul, sense of humor, the works.

I've had a bad couple of days (my cat and sole companion was attacked by two viscous dogs and had to have his jaw wired (long story) but I just brought him home and he's going to be fine. I'm looking forward to a happy holiday with my daughter and hope you all are enjoying the season too!

All the best,

Patti

Hello:

I too, have unknown primary. I am new to this site and you both have inspired me to write on this string. I wanted to at least join in so you both know there are more of us out there...

I was diagnosed in late June 07, with Stave IV Unknown Primary, with a large tumor in my right lung and multiple mets on on my spine, pelvis, and hips.While EVERYONE is convinced it is simply Lung Cancer (looks like a duck, walks like a duck, sounds like a duck...), the biopsies said upper GI and my blood markers remain high for upper GI, although, I too, have no other evidence of upper GI cancer (not on the Pet/CT scans, not after either a colonoscopay or endoscopy).

I, too, found out about the cancer in a strange way...  I was having severe back pain and after 12 months of screwing around with chiropractic, I finally got my primary physisian involved asking for MRI's and seeking out an orthopedic. After 1 month of PT (to no avail and now adding hip pain in the mix), a second MRI of my pelvis led to the Ortho driving to my house when he got the report (he is a dear friend from church) to tell me I had secondary bone cancer. Then it was off down the rabbit hole with testing, etc... You all know how that went.

I started off with (3) shock and awe doses of Carbo Platin, Taxol, and Gemzitbene which knocked me very hard. Serious "chemo brain", loss of appitite, sour stomach, fatigue, and trouble sleeping. Complications with back pain led to me needing to radiate certain of the bone mets. So we dumped the Gezar (can't do Gemzarwith radiation) and continued the Carboplatin with the Taxol. I handled the side effects much better with fatigue my main issue.

I had my "judgement scans" just this week and I can say God has blessed me greatly with healing. All of my tumors have responded and shrunk from 30 to 80%, depsnding on the location. My blood counts for lung are way down, but strangely, my blood counts for upper GI grew higher.

I still have a ways to go and will need more chemo. It looks like we are going to add Gemzar back in the mix (to use all three) to attack the upper GI story, which has me nervous about all the side effects again.

I have done all of my treatment in Florida so far, but have been transferred by my company to Chicago. And so I need to find a new team. I am visiting the Univ. of Chicago next week and possibly Northwestern. Any suggestions anyone?

Eric

Well Hi Eric! Welcome to our "unknown bunch". :-)

Congrats on the shrinkage. You talk about your markers changing and they never mention that to me, so next appt. I'm going to ask. I have no idea what mine are showing anymore.

How old are you? So far we're ranging I think from 38-56. Since my birthday is the 28th it will be 38-57 soon!

You're moving to Chicago! What a trip! My daughter lives there now and she is really pushing ME to move there to be closer to her. I am stuck in Arizona which I pretty much hate. I was wondering too what kind of care I could find there, so please share whatever you find out.

Have you managed to keep working through all of this? How's that been going? Is the move to Chicago something you want? Did you say where you live now (I hate that you can't see the email you're responding to when you're typing!!) Anyway, it's great to hear from you and please continue to share. How's your family taking all of this, are members moving with you? How much time do you have to organize?

Sorry, I'm a question machine. Hope you are enjoying the holidays!

Patti