Carcinoma of Unknown Primary

wmjnt

jensaavedra said:

CPU
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

CUP-Squamous cell carcinoma, stage IV
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

LeslieDavis

My brief story
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

1georgia

jensaavedra said:

CPU
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

metastatic squamous cell cup stage 4
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

wmjnt said:

CUP-Squamous cell carcinoma, stage IV
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

How are things now?
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

KWeiser

jensaavedra said:

CPU
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

diagnosed at 31 with CUP
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

KWeiser

1georgia said:

metastatic squamous cell cup stage 4
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

young age and with CUP
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

KWeiser said:

young age and with CUP
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

squamous cell unknown primary
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

josever

LeslieDavis said:

My brief story
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

metastatic adenocarcinoma of an unknown primary
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

cindylou01

1georgia said:

squamous cell unknown primary
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

Another Squamous Cell Carcinoma w/ Unknown Primary
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