CSN Login
Members Online: 17

Carcinoma of Unknown Primary

kgilbert
Posts: 1
Joined: Apr 2002

I am looking for anyone out there who has been diagnosed with a carcinoma of unknown primary ruled out as a germ cell tumor. Also we have been through treatment with taxol, carboplatnum, and etopiside which has failed to work. now we are going trough treatmnt with irinotecan and gemcitibean. I am looking for someone with experience in this diasease where you were treated and what type of treatment you received as well as outcome. My husband's age is 33. Thank you
bryanandkiminfla@webtv.net

mhwow
Posts: 1
Joined: Feb 2003

I realize that it has been a long time since you wrote your message, however I hope that your husband is still here. I was diagnosed with squamous cell carcinoma of unknown primary last February. The tumors were in the pelvis in two lymph nodes, one on either side. They are retroperitoneal. The one on the right is very close, and actually invested in my sciatic nerve, and the left one is wrapped around my ureter and very close to important blood vessels. When they opened me up last year, they closed me back up without doing anything but taking samples. I underwent radiation combined with cisplatin. The radiation was very helpful for the tumor on the right. It reduced the pain significantly.About two months later the tumor on the left which had been quiet began to grow. I looked into surgery again but the risks and consequences were greater than the benefits. I went to Mass General and had a GYN oncologist recommend cisplatin/gemcitabin together. I started in November, had 8 treatments. My tumor shrunk about 25%. It was a difficult regimen, but I am willing to stick with it for another round to see if it continues to help. Where is the carcinoma in your husband? At what cancer center is he being treated? These are strange types of cancer, and there are no set protocols. It's somewhat trial and error. I was 39 yo when diagnosed and turned 40 in May. I had been very healthy. Anywway, I hope this email is helpful in some way.

APatient
Posts: 5
Joined: Apr 2003

Hello, When they found the tumors in the
pelvis, did they do M R I's or what? What
made the doctor go to the pelvis, pls
respond. I had m r i of abdomen and mass
was found on spleen. also i hurt , have
pain in my pelvis near where yours was.
Had hysterectomy in 99 and it was begining
stages of cancer. Currently have melanoma
found in the scalp may be a mest. to spleen.
pls answer the question. thank you

RLinn50667
Posts: 3
Joined: Mar 2003

In September,2001, I was diagnosed with Mucinous Adeno Carcinoma with unknown primary. In December , 2001, I was operated on and had 25lbs of tumor removed. My spleen was encased in a tumor and a couple of other smaller tumors were left. I then signed up for a trial and had I had Gemacitabine on day 1 and 8 of each cycle and carboplatin on day 1 of each cycle. I also took Xeloda twice a day from day 1-14 of each cycle. Cyclles lasted 21 days and this went on for 6 months. I was treated at the University of Michigan Cancer Center. Although it did not shrink the tumors< I had left, it prevented them from growing. I have been out of treatment now for 9 months. Although I understand there is a Dr. Mansfield, at MD Anderson Cancer Center, in Houston , Texas, that is a specialist in this type of Cancer and I plan on getting a second opinion from him to see if there is anything more that can be done.

APatient
Posts: 5
Joined: Apr 2003

Did they take out your whole spleen? Was
a cat scan done or m r i of the spleen?
Did they find the tumors only after they
opened you up or did they show up on film?

RLinn50667
Posts: 3
Joined: Mar 2003

They told me about the spleen after I was opened up. Although it does show up on the catscan also. They did not remove the spleen because they felt it would be too much of a bloody mess.

Denise6
Posts: 6
Joined: Feb 2003

i know a little bit of that my husbands was told this on 1/2/03 happpy new year for us all in all he has been through 8iv chemo and his is all contanned in the liver may be we can help each other my husband just turned 52

Denise6
Posts: 6
Joined: Feb 2003

his cancer was called neuroendoctrine tumor of unknow primary and is a neuroendoctrine carcinoma

EGCsurvivor
Posts: 2
Joined: May 2004

I had a yolk sac extra gonadal germ cell tumor primary to my prostate. The doctors didn't want to believe it was primary to the prostate, but nothing else was found. I underwent 4 cycles of BEP and a radical prostatectomy. After the surgery, pathology revealed that the tumor had formed a foci of primitive neuroectodermal tumor as well as a low-grade sarcomatous component showing rhabdomysoarcomatous features. Indiana University believed that foci did qualify for residual yolk sac tumor having both microcystic and glandular arrangements. There were also solid foci, but it was unclear without additional studies whether these corresponded to yolk sac tumor or primitive neuroectodermal tumor.

That was in Jan 2004. So far I am cancer free.

RachelleMarie
Posts: 6
Joined: May 2004

I am 39 year old single mom and was diagnosed with adenocarcinoma with unknown primary 6 mos ago. My doctor tells be that CUP (and I) have a very poor prognosis. I am searching for people who have survived or are surviving this. I am looking for as much hope as possible. My boys are only 6 and 8 yrs old and I can't stand the thought of dying. Are there any happy endings out there???? rachelle@total.net

lleever
Posts: 1
Joined: Jul 2004

Rachelle, My husband is 44 and has CUP. Diagnosed two weeks after we returned from our honeymoon. I wish that I could tell you that all of the research that I have done has helped. Most of what you read will depress you...I,too am looking for happy endings -- if you find any, please share. What I can tell you is that the doctors made me believe my husband would be dead in only 6 months...and now it has been nearly 9 months and other than suffering when in chemo, he is doing really well. You would never know he is so sick. My heart is with you -- stay strong and don't give up the fight. If you find any good news or stories, please share and I will do the same.

RachelleMarie
Posts: 6
Joined: May 2004

Hi, How are you doing? How is your husband responding to chemo. I've been on a taxol, carboplatimum and gemzar mixture. It's hell but the tumours are melting away. I guess for how long is the question.Where are your husbands secondary tumours? I know what you mean in that one would never know he was sick. Except for being bald, apparently I look great. My kids had a bit of a time adjusting to it (they are 6 and 8) but I try not to make a big deal of it. I heard from one lady who's mom was diagnosed with cup and given 2 months to live and that was 10 years ago! So there is at least one person out there beating the odds, and me and your husband will be the next two. Please update me on how everything is going and I am praying for the best for you.
Rachelle
rachelle@total.net

RachelleMarie
Posts: 6
Joined: May 2004

Hi, How are you doing? How is your husband responding to chemo. I've been on a taxol, carboplatimum and gemzar mixture. It's hell but the tumours are melting away. I guess for how long is the question.Where are your husbands secondary tumours? I know what you mean in that one would never know he was sick. Except for being bald, apparently I look great. My kids had a bit of a time adjusting to it (they are 6 and 8) but I try not to make a big deal of it. I heard from one lady who's mom was diagnosed with cup and given 2 months to live and that was 10 years ago! So there is at least one person out there beating the odds, and me and your husband will be the next two. Please update me on how everything is going and I am praying for the best for you.
Rachelle
rachelle@total.net

pchappel
Posts: 1
Joined: Jul 2004

I realize that it has been a few months since you posted this msg. My daughter-in-law, 38 yr. old dx with adenocarcinoma of unknown primary-currently in treatment with taxol, carboplatinum, and etopiside - how did your husband respond to the irinotecan/gemcitibean (sp??) Hate having to see her go through the side effects - she is down to 101 lb. also has two small children - prognosis is grim but we are determined to investigate other options. Are you familiar with anything out there that could possibly work. She has metastasis to the liver, lymph sys. and lungs. Thank you for your feedback.

u2lins
Posts: 1
Joined: Jun 2004

Hi RachelleMarie
I too have cup with mets in the liver the liver has 5 tumors in both lobes and I am being treated with irinotecan/gemcitibean I have had 11 treatments with little side affects (I am very tired and a little nausea and I have gained 20 lbs since I started treatment I am huge lol) a quick story I am waiting for my 1st ct scan after 6 weeks of treatment and I am talking with this man age 75 and he says to me "I have liver cancer and its been 7 years how great is that do you know anyone who has lived that long?" and I responed yes I hope me. At my 6 week ct scan it showed a 25% shrinkage and at 12 weeks it showed a small percent and 1 lymph node clear of cancer. I am 42 and have 3 children ages 5,5 & 11 so I know how you feel. Just know that god does not give us anything we can't handle. Remember that the prognosis your doctor gave you was his opinion he can not predict the future. My doctor would not give a time limit and told me that this can be controlled. My good friend was diagnosed 2 weeks before me and we have a saying we tell each other " you have two choices you can live or you can live there is no other choice" You need to stay positive and laugh a lot. I am truely blessed with great support from my family and friends. I will keep you in my prayers and if there is anything I can help you with please email me. I dont know where you are being treated but if you dont like what your doctor is telling you then maybe look for a new doctor I know my friend did and he is very happy.
Linda

RachelleMarie
Posts: 6
Joined: May 2004

Hi Linda,
Thanks for replying. I found your message very encouraging and uplifting and I thank-you for that. I feel we have something in common, besides cup, being both young and with young children. It sounds to me that your cancer is responding to the chemo and that is always good news. I have just finished my first chemo protocol, and my ct scan showed that the tumors are virtually all gone! Tomorrow I start my second round of
chemo, sometimes called maintence chemo, for another 3 months. My ocologist (mister worst case scenario) feels like the disease is under control and that I could be in remission but when I stop chemo it will grow back. That really depresses me, cause I'd like to be cured and would like life to go back to the way it was. I find living with the unknown very difficult. I have gotten a couple of other opinons, and they both agree with my drs. recomandations, so I will stick with him, he's gotten me this far and so far so good. He's just not a great communicator, I love information! In the meantime, I find it very helpful to be in contact with people like you who are so positive, you really help me feel like I am not alone and that somehow life will be ok. I am happy that you have a good support system around you. How are your children handling the situation? How long have you had cancer. I will hope and pray for all the best for you.
Please email back at my direct e-mail, rachelle@total.net.

Take care,
Rachelle

RachelleMarie
Posts: 6
Joined: May 2004

Hi Everyone in this Rare Cancer sub-group.
First of all, thank-you Linda and Yvonne for emailing me directly. You helped out so much in a time of absolute dispair. Sadly, this doesn't seem to be a very active group. I can not help but to wonder why. But I do hope that anyone that reads our stories finds some sort of solace and support. If you have read this thread you will know that I was diagnosed with adenocarcinoma of unknown primary origin 13 months ago. Facing the grim prognosis alone with 2 young children was/is the hardest thing I have ever faced. Luckily I have many careing and generous friends and family members that shared the burden with me. Because of the unlikely-hood that this type of cancer would respond to chemo, and given the fact that I was more or less asymptomatic, treatment was delayed 6 months, until I was is so much pain I could not sleep.

What happen next is nothing short of a miracle. A 3 month protocol of gemzar, taxol, a carboplatinum produced a complete response. A maintenence dose of taxol was started but aborted after only 1 cycle of the 6 month regime. Stopped because my ct scans continued to be normal and the blood tumour marker (ca-125) remained normal as well. (Plus the quality of my life SUCKED on chemo). So after another presentation to the tumour board (13 oncologists of various specialties) it is deemed that I am in remission.
They don't know for how long. But, I'll take this result and run (far,hard and fast) with it. I want to share this with anyone who has this diagnosis, to give hope. That what you read on the internet is only a generality, not your future. I recommended articles by Hainsworth and Greco (researchers in unknown primary....google their name) as hopefull and positive information. I pray daily for my continued health, and will for you too. (If God's not your bag, that's ok, I'll just do some creative visualization for you).

I am interested in hearing from anyone who would like to share their story and I am willing to share more to anyone who is interested. I send you all my support and good wishes and wish you nothing but happiness and good health.

Rachelle

rachelle@total.net

bball3dad
Posts: 1
Joined: Sep 2005

Rachelle

Are you still lookng at these boards. I've just been diagnosed with adenocarcinoma of an unknown primary. I'm 51 with 3 small kids. Your story provides a measure of hope for me. I've only presented in the neck lymph nodes. I'd like to hear how you are doing.

Thanks,
Paul
bball3dad@optonline.net

RachelleMarie
Posts: 6
Joined: May 2004

Hey everyone,
So far, so good. In remission for 10 months now.
Freaking out about my next doctors appointment.
They really are life and death meetings.
In the meantime, LIFE IS GREAT!!! I have been having
the best best best year of my life. LIve large, that's all I can say.
I have a new email
rachellelapointe@sympatico.ca

Cheers

jensaavedra
Posts: 3
Joined: Dec 2009

Well, no one has posted on this for a while- hopefully that means everyone is in remission.... I am a 35 year old female that has been diagnosed with Squamous Cell Carcinoma- primary source unknown. I was 34 when I was diagnosed, very healthy, and have 3 small children 6, 3, and 1. Here's my story:
I started back to the gym when my youngest daughter was 6 months trying to lose the baby fat, but when I would run on the treadmill my leg would swell and go numb (also I was short of breath but at the time I just chalked that up to being out of shape). My dr sent me to get ultrasounds of my leg to see if I had blood clots, then for a CT scan, then for a biopsy of a lymph node in my abdomen area, then for a PET scan, then a biopsy of a lymph node in the left side of my neck. At first they thought I had lymphoma, but once the biopsy came back I was diagnosed with squamous cell. I went through tons of testing to find the primary source both at my local oncologist and at MD Anderson Cancer Center, but we didn't find it. I have cancer in my lungs, in my lymph nodes in my neck(left side) abdomen and pelvic area, as well as some noduals in my chest.
I have had 4 chemo treatments with taxol and carboplatin which knocks me on my butt for 5 days following the treatment, then I am fine- you wouldn't know I am sick aside from not having my hair. Honestly, I try to stay upbeat and determined, but it is hard because I am having a hard time finding anyone else out there with this type of cancer, because my children are so small, and because everything you read out there gives a very bad prognosis. So... I am looking for anyone that is or has went through the same thing I am so we can "share" info on this battle- anything that helps.

Thanks!

Jenn

myrosielife
Posts: 1
Joined: Jan 2010

I am 45 years old and have two daughters (21 and 14).I was diagnosed recently with metastatic adenocarcinoma. I've spent the month of December searching for a primary. My only clue to any illness was that I had some enlarged nodes on the right side of my neck. I thought I might need antibiotics so I went to the doctor. We did an Ultrasound which showed several very large lymph nodes. I had a positive biopsy. I've had a CT of my neck, chest, abdomen, pelvis, PET scan from skull to femurs, MRI of the brain, gastroscopy, and colonoscopy. Bronchoscopy is scheduled for tomorrow. The only things showing up abnormal are the right side lymphnodes going towards my breast bone. My lungs, abdomen, etc. are clear. It's very frustrating not knowing where the cancer is coming from. Even my lab work looks good. As my oncologist said, "On paper, you look like the perfect patient". My slides were sent to Mayo Clinic for a second opinion and they agreed with the pathologist here (Indiana). However, they thought the cells favored lung as a primary. My oncologist is going to treat it as such after I have my bronchoscopy. I stopped reading the stats and focused on finding positive stories. I have always been a person that focused on the positive. But reading all the medical articles had me focusing on the 50% mortality rate instead of the 50% that survive! I want to know what the survivors did so that I can be one of them. I'll let you know the regimen that my oncologists puts me on as soon as she tells me. My prayers and good wishes go out to you and your family!

wmjnt
Posts: 5
Joined: Oct 2009

Dear Jenn,

I hope you are doing okay. You sound like a strong woman and I hope and pray you will begin seeing some positve results soon. I also hope you have a good support system to help you get through this. I never knew how important that was until these last few months.

Its been a couple months since you wrote this but after searching all over this site, yours is the first mention of Squamous cell CUP that I have found. My husband was diagnosed in September 2009 and we have been fighting this monster ever since then. His was first found in the serratus muscle and in the bone of the scapula. It is in two lymph nodes, one under his arm and one between his breasts, nest to his heart with a string of tumors under his right arm and attached to ribs on his lower back. Also, it is wrapped around the bracial plexus nerve and artery of his right arm and has left his right arm and hand useless. He just had a new ct last week and after radiation and oral chemo for 4 months, it is still growing and is now showing up in his right lung.

He is starting Taxol next week. We are not as young as you are but had just begun our retirement after years of hard work. He is 66 and we have been married 45 years. I guess I feel a little guilty feeling so frightened when so many people so much younger than us are going thru the same or worse situations. But I just can't lose him! We are so devoted to each other and I can't imagine going on without him.

We live in Alabama and feel good about the care he is gettng at UAB but we are considering going to MD Anderson too. Do you feel they were able to do anything for you there? His doc told us this is such an unusual case that there are not enough people with Sq Cell CUP to even consider doing clinical trials of any kind.

Please write back if you wish and I do hope it helps to know there are others of us out here.

Our best to you,

Jan

KWeiser's picture
KWeiser
Posts: 16
Joined: Jul 2010

Dear Jan,
I posted a detailed reply below entitled "young and with CUP" that shares more detail if you would like to know a little bit about my story (thought it would be silly to write it all again since it's posted right below). I was wondering if you and your husband ever got any second opinions or visited MD Anderson. I hope all is well with both you and your husband.
Sincerely,
Kelly

1georgia
Posts: 2
Joined: Aug 2010

Dear Jenn, Hope you are well. I was diagnosed in Jan. of '09 with metastatic squamous cell cup. I had what I thought was a groin hernia. The cancer was found in lymph nodes throughout my body. I went through 6 treatments of taxol/carboplaton and everything seemed to be in remission. My 6 month ct scan showed it either came back or as my doctor expained 1 cell not gotten is all it takes. I went through another 6 treatments at the beginning of this year. My ct/pet scan shows it is in remission again.
My oncologist is very optimistic that with my young age and otherwise good health, and the cancers speedy reaction to the chemo drugs used, that this can be "taken care of". And even though we don't know where it originated, treatment would have been the same regardless. One pathologist, from my ENT visit, is looking at the slides from the very first biopsy in '09, to try to determine what the cells look like (where they might have originated from). Waiting to hear back on that.
Hoping this sheds some light.
This is a very brief overview of what I've been through. I would be happy to share more with you if you need.
Tracy

KWeiser's picture
KWeiser
Posts: 16
Joined: Jul 2010

Dear Tracy,
I read your post and noticed that you said your oncologist stated young age and good health were optimistic factors in your treatment. Along with the other posts before and after yours, several individuals with CUP seemed to be younger and I am sooooo glad to have finally found some. I have been searching this site for several weeks looking for just this!!!
I am almost 32 years old and was diagnosed in October 2009. I have had back pain for years but started having leg pain so surgery was done, nothing like a fusion or anything, just shaving of the bulging discs. The pain in my leg did not go away and was getting worse. Further test showed a tumor on my right hip. Immediately I was sent to the oncologist and soon found that cancer was in the lining of my lungs, kidney, and liver. I had a rod put in my right leg and was on crutches from the minute they saw the tumor until about 2 months after the surgery. I had radiation to that leg. I then had chemo, Carboplatin and Taxol. I had 8 or 10 treatments but the chemo was only keeping the tumors stable - they were either shrinking or growing by .1 or .2 centimeters. My oncologist wanted me to visit the “guru of adenocarcinoma, Dr. Anthony Greco” at Tennessee Oncology, linked with Vanderbilt. I had this consult for a trial, but my oncologist at home and the trial doctors suggested I try another kind of chemo first. In order to get a different chemo my diagnosis had to be changed. I was told I technically have adenocarcinoma of unknown primary but my diagnosis on paper is now Adenocarcinoma with lung as the primary so that I can have Alimta for my chemo. Recently the cancer has spread to my other hip and my lower back. I had more radiation and have had 3 treatments with the new chemo. I have had very few symptoms from either of the chemos, so I consider my self very blessed. I had my first scan since I started the Alimta and should get the results this Thursday when I go back for my 4th treatment. I live in GA as well and was wondering, did you get more than one opinion? I have wondered if we should seek other opinions besides my current oncologist and the Tennessee "guru". And if you don’t mind sharing, how old are you?
Hope things are well with you and best wishes!
Sincerely,
Kelly

1georgia
Posts: 2
Joined: Aug 2010

Hi Kelly. I tried to find your email address to send this to you directly, but I haven't had much luck with this site. Your were wondering my age. I was 42 when I was first diagnosed. My oncologist is at the Zangmeister Centre in Columbus, Ohio. You were also wondering about other opinions. I definetly believe that second opinions are important, esp. if you don't feel 100% confident in the doctor. Never ignore your GUT instinct. God gave it to you for a reason and it shouldn't be ignored. I considered going to Cancer Care of America. Heard they do amazing things with people who have lost hope. But I stayed with the 2nd oncologist I found because he put me in a safe place mentally and I was able to sleep and eat again.
Hope you are where you should be, Tracy

gttmdixon@columbus.rr.com

cindylou01
Posts: 2
Joined: May 2011

Hi Tracy. I also have Metastatic Squamous Cell Carcinoma w/ Unknown Primary. It was found only in the lymph nodes and no tumors. I was diagnosed in Sept. 2010 and began Cysplatin/Taxane in Nov. on a once every 21 days schedule. I was only able to tolerate one treatment like that and then we had to cut the dosage down into smaller doses every week for 3 weeks. It has since been changed to Carbo/Taxol with one does of Carbo/Taxol together and then for the next two weeks I get just Taxol alone. I had a scan in March that showed the lymph nodes had shrunk and there was no spread to organs. I pray it continues like that. My next scan is the end of May. How are you doing now? I agree with you about getting a 2nd opinion but I didn't get one. I think I have a good Dr and I'm hoping that she is on the right path for me. I have been doing very well on the chemo and have had minimal pain since starting it. The chem makes me tired and I think I'm getting some neuropathy in my feet but other than that, most days I don't feel like I have cancer at all. Wish that really was the case. But just wondering how you and other folks with this diagnosis is doing after a year or more.

God send His best to you,
Cindy

KWeiser's picture
KWeiser
Posts: 16
Joined: Jul 2010

Hi Jenn,
I read your post and wanted to see how you are doing since your message was posted in late 2009. I know that the poor prognosis and the lack of others with CUP can be discouraging. I have been looking and posting for replies from anyone in their 30's with CUP but have not had good results (I have a post above with my "story" - thought you could read it instead of me typing it twice). I just stumbled on to this discussion some how and read all these posts. My cancer is in the pelvis, lung, kidney, and liver - similar to yours except for the lymph nodes. Please reply if you feel up to it, just wondering how things have gone with treatment and any advice regarding MD Anderson would be greatly appreciated!
Sincerely,
Kelly

LeslieDavis
Posts: 2
Joined: Feb 2010

Hi friends~~

I wanted to give you a little background on my case, if you'll indulge me. My name is Leslie, I'm 47 and grew up in Cincinnati, OH, but am now living in Western Washington state.
In mid-August, 1 day before my husband's 48th birthday, he died of a massive heart attack while out for a walk. The almost ridiculous thing is that he was in excellent shape~~walked and roller bladed everywhere. So, I was dealing with losing my husband of 23 years and best friend for 9 years prior to that, when I got MRSA in my left leg. I have chronic secondary lymphedema and I'm used to infections but knew that one was different. October came and I forgot to pay my prescription premiums and I couldn't afford the 600mgs of morphine my doctor had me on for my back pain, so I had to quit cold turkey. That was ROUGH! Within a week, while still going through withdraw, I developed horrible pains in my abdomen and went to see my doctor. He said he believed it could be from the withdraw, to give it a week and if it wasn't better, we'd do an ultra sound. Well, I didn't make it a week and went to the ER. They did a CAT scan there and informed me the next morning that I had a 6cm mass at the head of my pancreas, extending to my liver. ME?? I couldn't breathe.

The next day I saw my doctor and he referred me instantly to an oncologist. Since then, I've had 2 biopsies, countless CT's, a PET/CT, pelvic ultra sound, etc, etc. On January 7th they told me. The tumor is cancerous and big. It's situated right beside my liver at a point where there are lots of arteries, vessels, etc., joining so that makes it not in a good spot for surgery. They don't know where the primary cancer is as they can't find anything but this mass. Strangely enough this mass has LUNG cells in it, so they're treating it as if it were lung cancer. I've never smoked a day in my life. And a CT of my lungs say they're perfect~~no cancer.

My Oncologist said we'd start with 6 chemo treatments of Taxol and Carboplaitin, then do another PET/CT to see if the tumor has shrunk. If it has, more chemo and possibly radiation and if it shrinks enough, she's going to find a good surgeon who'll remove the remainder. One visit with her she told me she'd talked to at least 17 doctors in 2 days about me, had my case in front of a tumor board and was going to find me the best surgeon there was because of the risks. Of course, all of that is speculative on how well the tumor is responding to treatment.

The Radiation doctor I had a consult with showed me the image of my tumor and I couldn't believe how BIG it was!! It takes up 1/3rd of my liver!!

There are 2 very GOOD positives here. One is that in the beginning everyone was 90% positive it was pancreatic cancer because of it being at the head of the pancreas. I lost my mother in law to pancreatic cancer within a week of her diagnosis. I'm VERY thankful it's not pancreatic. And two, the tumor isn't even NEAR the pancreas any longer. As soon as I got the diagnosis of a tumor, I was put on prayer chains in several states...and the next thing I know, the tumor has MOVED. Of course, the medical people can't explain it. But I have no doubt who was looking out for me. Even to the point of knowing how much I didn't want to lose my long hair. So far, I haven't lost a strand.

Apparently there are 10% of people who get these rogue tumors and the medical field never figures out where they come from/or came from. My regular doctor said he is encouraged by all of what I've told him, and that if the tumor has lung cells, but the lungs are clear, that perhaps it was just some wayward lung tissue from even earliest childhood that moved and the tumor developed over time. He said not being able to take the morphine that the other doctor had had me on for so many years was a blessing in disguise because clearly it was masking the pain from the tumor, and that's why suddenly I was having such pain.

The chemo is hard on me--the nausea gets to me, but the fatigue and not sleeping are rough. And I've lost over 100lbs since June from stress and loss of appetite, so I have to try to keep eating, but food and I sometimes are NOT friendly anymore. I'm sure you know what I mean. And some days I feel like I can keep battling this, and others I'm just so tired of the fight and I get so depressed. My family lives way on the other side of the country, and living on $800 a month disability income doesn't give me much chance to save up to move home, which is what I want to do very badly.

Anyhow, I just wanted to post now that I think I found the right board for what it is I have. People ask me what kind of cancer I have and I'm always saying,"They don't know." That's a new type, I guess. God Bless You all and those you love~~~

Leslie
leslieeickhoffdavis@gmail.com

josever
Posts: 4
Joined: Apr 2011

Dear Friends,

After 12 months, my wife Laura (45) continues to fight cancer (metastatic adenocarcinoma of unknown primary). After 5 months of chemotherapy in 2010, Laura resorted to Phase-1 clinical trials (MD Anderson Cancer Center, Houston, TX) Jan-March 2011.

What keeps us up at night is that this disease has progressed despite standard therapy and that no standard therapy exists.

The 2 clinical trials failed, and Laura may not qualify for other trials due to liver condition (further growth of multiple tumors are blocking bile ducts, resulting in high levels of Bilirubin).

To prevent further tumor growth, next step is infusion of Irinotecan directly to her liver, followed by general chemotherapy (Erbitux + Avastin). Oncologist mentioned - approx 1 in 3 treatments prevented further growth but not necessarily shrink the tumor. Oncologist also mentioned - if this treatment is not successful, there may be no further treatment options at MD Anderson.

We can not accept any "no-options" decisions. I am reaching out for advice.
Thank you for listening- Jose

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network