Primary tumors of unknown origin

Brettsvette

50 y.o. otherwise healthy male Houston TX area. Dxd with metastatic tumors of unknown primary origin January 08 2010. Mets to spinal column (t2-t4) liver, and abdominal lymphs. Surgery to remove spinal tumor January 8th discharged hospital January 15. Radiation to tumor margins of spine MD Anderson Feb. 10 sessions total. 13cm lesion on liver under PET/CT. Chemo regimen started Feb 22nd MD Anderson. Cisplatin/Gemzar 2 week cycles duration unknown. Prognosis dependent on reduction of tumor burden after session 2-3 chemo.

First chemo tolerated well. On day of chemo, infused with hydration then Emend per oral 125mg (NK-1 receptor blocker) then per oral Emend 80mg capsules morning two and three post infuion. Also treated with Zofran (5HT-3 blocker) injected into line day of infusion then sent home with #12 per oral Zofran tablets taken every 8 hours as needed. Also given Decadron 10mg injection at time of infusion and given per oral tablets of phenergan taken as needed for self administration.

Have experienced no emesis or nausea of notable duration during round one. Hair has remained intact with no visible thinning at time of writing post 1st cycle infusion day 13. Fatigue and malaise days 3-5 post infusion and stamina getting better at the time of this writing. Appetite has remained good but radiation has made the lower esophagus/upper duodenum tender. I am 3 weeks post radiation at this time but upper GI tract remains tender/unsettled. Eating requires tenacity and smooth/easily digested foods. Also taking laetrile (raw apricot kernels # 10-15 per day) with enzyme supplement.

Will continue to post as we move forward. There is no topic board for tumors of unknown primary origin so I am starting this small thread. -Brett

wmjnt

A couple questions
Brett.
Have they told you what kind of cancer it is? Since you live in Houston, are you receiving treatment at MD Anderson?
Jan

Brettsvette

wmjnt said:

A couple questions
Brett.
Have they told you what kind of cancer it is? Since you live in Houston, are you receiving treatment at MD Anderson?
Jan

Primary CA of unknown origin reply
Jan,

Dreadfully sorry about my tardy reply and I beg your forgiveness in that regard. I am actually in the middle of my third 2 week cycle of the cisplatinum/gemzar mixture. Yes, I am being treated by the MD Anderson network of physicians and facilities, albeit at a newly opened satellite office in lieu of the main campus. In regard to your second question, the answer, regrettably is no they have not(and I am told will never)found the origin of the primary tumor. Hence, I have no tumor markers to observe/record reductions or increases. I am told they surmise my primary is most likely one that originated in the bile duct (biliary tract). I will soon know if the treatments are making a difference. God Bless You.

Brett

Brettsvette

Primary tumor of unknown origin (possible biliary tract)
I have progressed to my third round of chemo and at this writing I am exactly halfway though the 2 week cycle. I tolerated 2nd round failry well, noting again a delayed response from day of infusion (which quite literally does take an almost full day start to finish)to days 3-5 wherein very noticeable peripheral weakness and lack of stamina present. This weakness is akin to the feeling one might experience following a bout of the common flu, minus symptoms like fever, congestion, and coughing fits.

What I have observed is general fatigue, lethargy, lack of concentration/focus and a curious lingering soreness of the lower rib cage in a bilateral fashion and posterior in nature which seems to be the result (a personal observation and not medically valid) of perhaps lying down too often or too much to conserve energy during this time. I have recovered much of my former appetite althoug my digestive tract is still not back to normal by any stretch of the imagination. I still feel a general heaviness just below the sternum after eating which I suspect is the result of the irradiation of the area following the removal of a metastatic tumor from thoracic T2-T4 on January 8th of this year. (Collateral damage to lower esophagus)

The anti emetic regimen now consists of NK-1 receptor blocker Emend per oral days 1-3 of initial infusion Q day as directed, IV palonosetron 5HT3 blocker Aloxi at time of infusion and per oral ondansetron Zofran given at 8 hour intervals Q TID on days 2-4 following infusion along with per oral phenergan as needed (PRN). No nauses/vomiting episodes as of yet with 3 cycles now completed and going into 4th. Cisplatinum dosing has been rather high at 75mg/M2. Curiously, still no observable chemo induced alopecia although I have noticed very pronounced sleep disruption requiring sedative PRN and appropriate NSAID therapy when aches/pains are present. Blood counts are typically lower than normal as far as red cells/hemoglobin day prior to infusion but are so far still high enough to preclude use of any haematopoietic agents such as neupogen.

Brettsvette

Brettsvette said:

Primary tumor of unknown origin (possible biliary tract)
I have progressed to my third round of chemo and at this writing I am exactly halfway though the 2 week cycle. I tolerated 2nd round failry well, noting again a delayed response from day of infusion (which quite literally does take an almost full day start to finish)to days 3-5 wherein very noticeable peripheral weakness and lack of stamina present. This weakness is akin to the feeling one might experience following a bout of the common flu, minus symptoms like fever, congestion, and coughing fits.

What I have observed is general fatigue, lethargy, lack of concentration/focus and a curious lingering soreness of the lower rib cage in a bilateral fashion and posterior in nature which seems to be the result (a personal observation and not medically valid) of perhaps lying down too often or too much to conserve energy during this time. I have recovered much of my former appetite althoug my digestive tract is still not back to normal by any stretch of the imagination. I still feel a general heaviness just below the sternum after eating which I suspect is the result of the irradiation of the area following the removal of a metastatic tumor from thoracic T2-T4 on January 8th of this year. (Collateral damage to lower esophagus)

The anti emetic regimen now consists of NK-1 receptor blocker Emend per oral days 1-3 of initial infusion Q day as directed, IV palonosetron 5HT3 blocker Aloxi at time of infusion and per oral ondansetron Zofran given at 8 hour intervals Q TID on days 2-4 following infusion along with per oral phenergan as needed (PRN). No nauses/vomiting episodes as of yet with 3 cycles now completed and going into 4th. Cisplatinum dosing has been rather high at 75mg/M2. Curiously, still no observable chemo induced alopecia although I have noticed very pronounced sleep disruption requiring sedative PRN and appropriate NSAID therapy when aches/pains are present. Blood counts are typically lower than normal as far as red cells/hemoglobin day prior to infusion but are so far still high enough to preclude use of any haematopoietic agents such as neupogen.

Primary tumor of unknown origin update April 8th 2010
Just infused round 4 chemo. CT scan of pelvis/abdomen scheduled for Thu April 15th at 10 am CDST Christus St. Catherine's Medical Center. We will know next week how this treatment is progressing as evidenced by tumor reduction or non-effect. Obviously I am praying for reduction and evidence of decreased tumor burden. The large lesion (13cm) in liver needs to go! I suspect lymph involvement to decrease as well. We shall see. Thanks.

concerned_son

Brettsvette said:

Primary tumor of unknown origin update April 8th 2010
Just infused round 4 chemo. CT scan of pelvis/abdomen scheduled for Thu April 15th at 10 am CDST Christus St. Catherine's Medical Center. We will know next week how this treatment is progressing as evidenced by tumor reduction or non-effect. Obviously I am praying for reduction and evidence of decreased tumor burden. The large lesion (13cm) in liver needs to go! I suspect lymph involvement to decrease as well. We shall see. Thanks.

Unknown Primary
Thank you for your posts. My mother (age 78, otherwise good health) was recently diagnosed with a PTUO. She presented initially with back pain. An MRI, CT, and bone scans revealed a good deal of skeletal involvement (several vertebrae, ribs, hip), tumors in one lung, liver, and upper chest - presumably lymph nodes. Her oncologist believed the primary site to be colorectal. An endoscopy and colonoscopy were negative. The cancer has been "typed" as adenocarcinoma, but the oncologist and pathologist described the biopsied cells (taken from spine during kyphoplasty) as being "too undifferentiated" to attribute definitively to a primary site. The oncologist recommended a course of Gemzar and Avastin.

Due to the ambiguity of the diagnosis, we are seeking a second opinion. I am wondering if you had similarly opted for another opinion, and how your oncologist/pathologist described their difficulty in locating a primary site.

I do hope your chemo and scans go well for you, and wish you much luck and strength.

CS

Brettsvette

concerned_son said:

Unknown Primary
Thank you for your posts. My mother (age 78, otherwise good health) was recently diagnosed with a PTUO. She presented initially with back pain. An MRI, CT, and bone scans revealed a good deal of skeletal involvement (several vertebrae, ribs, hip), tumors in one lung, liver, and upper chest - presumably lymph nodes. Her oncologist believed the primary site to be colorectal. An endoscopy and colonoscopy were negative. The cancer has been "typed" as adenocarcinoma, but the oncologist and pathologist described the biopsied cells (taken from spine during kyphoplasty) as being "too undifferentiated" to attribute definitively to a primary site. The oncologist recommended a course of Gemzar and Avastin.

Due to the ambiguity of the diagnosis, we are seeking a second opinion. I am wondering if you had similarly opted for another opinion, and how your oncologist/pathologist described their difficulty in locating a primary site.

I do hope your chemo and scans go well for you, and wish you much luck and strength.

CS

Primary Tumor of Unknown Origin
Dear CS,

Thank you for your recent post and God's love and strength to your mother, you and your family. Your mother's situation sounds eerily similar to mine with the exception of the additional tumor burden in the lungs, ribs, and pelvis. I had a colonoscopy/endoscopy performed while I was hospitalized from the T2-T4 tumor removal in January. These both turned up negative although significant inflammation was noted from the colonoscopy attributed to my ongoing ulcerative colitis. I was originally diagnosed with PTUO adenocarcinoma by the oncologist at the hospital, and like your mother, even after serial testing of the cells from the spinal tumor it was too ambiguous to isolate any particular tissue of origin.

I got a second and a third opinion from oncologists affilated with US Oncology and MD Anderson and all of them agreed on two things:

One: it was unusual, but not totally unheard of to have a cancer which remains unidentified for the duration of the treatment and mine was likely to fall in that category. There may be a good chance your mother's is similar to mine in that regard.

Two: All three concurred my primary likely originated in the biliary tract, but the probability was only 75-80 percent certain depending on which one you spoke with. Hence, the selection of gemzar/cisplatin for chemo.

I was diagnosed the first week of January 2010 and now it is April 18th. I had a CT scan taken last Thursday morning, April 15th and it showed reduced tumor burden in the large lesion located in my liver. It had reduced from approximately 12-13 cm to about 10 cm which is a good thing. My abdominal lymph node burden seems to be regressing very nicely as well. Unfortunately, it also showed two large pulmonary emboli which I had to be admitted to the hospital for treatment Thu-Fri of last week. I was started on low molecular weight heparin (lovenox) 100mg b.i.d. home administered injections. It is akin to taking abdominal insulin injections as the needle is very fine and it really doesnt hurt much. My wonderful wife is my nurse. I am back on the chemo this coming Thursday and will be on it for another 4 rounds before the next CT is taken. I am still weak of course, and still not out of the woods by any stretch of the imagination, but I am resolved to fighting on. God Bless your mother as she moves ahead. If she opts for chemo, please consider the anti emetic regimen described in the paragraphs above. I have had NO nausea/vomiting after 4 rounds of heavy chemo. I am a pharmaceutical professional by trade and know these drugs very, very well. Godspeed my friends.

Brett

Brettsvette

Brettsvette said:

Primary Tumor of Unknown Origin
Dear CS,

Thank you for your recent post and God's love and strength to your mother, you and your family. Your mother's situation sounds eerily similar to mine with the exception of the additional tumor burden in the lungs, ribs, and pelvis. I had a colonoscopy/endoscopy performed while I was hospitalized from the T2-T4 tumor removal in January. These both turned up negative although significant inflammation was noted from the colonoscopy attributed to my ongoing ulcerative colitis. I was originally diagnosed with PTUO adenocarcinoma by the oncologist at the hospital, and like your mother, even after serial testing of the cells from the spinal tumor it was too ambiguous to isolate any particular tissue of origin.

I got a second and a third opinion from oncologists affilated with US Oncology and MD Anderson and all of them agreed on two things:

One: it was unusual, but not totally unheard of to have a cancer which remains unidentified for the duration of the treatment and mine was likely to fall in that category. There may be a good chance your mother's is similar to mine in that regard.

Two: All three concurred my primary likely originated in the biliary tract, but the probability was only 75-80 percent certain depending on which one you spoke with. Hence, the selection of gemzar/cisplatin for chemo.

I was diagnosed the first week of January 2010 and now it is April 18th. I had a CT scan taken last Thursday morning, April 15th and it showed reduced tumor burden in the large lesion located in my liver. It had reduced from approximately 12-13 cm to about 10 cm which is a good thing. My abdominal lymph node burden seems to be regressing very nicely as well. Unfortunately, it also showed two large pulmonary emboli which I had to be admitted to the hospital for treatment Thu-Fri of last week. I was started on low molecular weight heparin (lovenox) 100mg b.i.d. home administered injections. It is akin to taking abdominal insulin injections as the needle is very fine and it really doesnt hurt much. My wonderful wife is my nurse. I am back on the chemo this coming Thursday and will be on it for another 4 rounds before the next CT is taken. I am still weak of course, and still not out of the woods by any stretch of the imagination, but I am resolved to fighting on. God Bless your mother as she moves ahead. If she opts for chemo, please consider the anti emetic regimen described in the paragraphs above. I have had NO nausea/vomiting after 4 rounds of heavy chemo. I am a pharmaceutical professional by trade and know these drugs very, very well. Godspeed my friends.

Brett

Primary Tumors of Unknown Origin
May 6th 2010. Round six of chemo today. Surprisingly, blood counts have remained high enough to continue treatment unabated. No alarming drops in hemoglobin or neutrophils. Platelets still look acceptable as well. RBC/WBC diminished but not to unacceptable levels. It is evident the marrow is taking a bit of a hit however, and we will see what transpires. I have been on 100mg b.i.d subQ injections of Lovenox since the last CT found evidence of bilateral pulmonary emboli. Will go to Qday injection of 140 mg Lovenox in 9 more days. I feel tired, of course and especially after chemo. I have been working 20 hrs a week and calling on some of my favorite healthcare practitioners in the Houston area for about 4 weeks now. Good to be back in the saddle although I have to be careful not to wear myself out. Summer heat coming on will slow me down a bit I'm sure.. I feel pretty good otherwise and feel my faith and support of my friends and family is critical in helping me keep this fight ON. Miracles still occur and yes, God DOES make house calls.

Brettsvette

Brettsvette said:

Primary Tumors of Unknown Origin
May 6th 2010. Round six of chemo today. Surprisingly, blood counts have remained high enough to continue treatment unabated. No alarming drops in hemoglobin or neutrophils. Platelets still look acceptable as well. RBC/WBC diminished but not to unacceptable levels. It is evident the marrow is taking a bit of a hit however, and we will see what transpires. I have been on 100mg b.i.d subQ injections of Lovenox since the last CT found evidence of bilateral pulmonary emboli. Will go to Qday injection of 140 mg Lovenox in 9 more days. I feel tired, of course and especially after chemo. I have been working 20 hrs a week and calling on some of my favorite healthcare practitioners in the Houston area for about 4 weeks now. Good to be back in the saddle although I have to be careful not to wear myself out. Summer heat coming on will slow me down a bit I'm sure.. I feel pretty good otherwise and feel my faith and support of my friends and family is critical in helping me keep this fight ON. Miracles still occur and yes, God DOES make house calls.

PTUO
7th round completed as of May 20th. It is Saturday, May 22nd and I am in the delayed phase of the chemo effects from this round at this time. Surprisingly, I am feeling pretty well so far during this round. Still no hair loss or thinning, still have been able to keep my weight on. Yes, I am easily winded and fatigued and I have good days and bad ones, but I am fighting on. My world is very upside down from a physical standpoint, but otherwise I remain the same. I am scheduled to have another CT scan in about 3-4 more weks. We will see what happens with the lesion in my liver at that point in time.

ldot123

Brettsvette said:

PTUO
7th round completed as of May 20th. It is Saturday, May 22nd and I am in the delayed phase of the chemo effects from this round at this time. Surprisingly, I am feeling pretty well so far during this round. Still no hair loss or thinning, still have been able to keep my weight on. Yes, I am easily winded and fatigued and I have good days and bad ones, but I am fighting on. My world is very upside down from a physical standpoint, but otherwise I remain the same. I am scheduled to have another CT scan in about 3-4 more weks. We will see what happens with the lesion in my liver at that point in time.

My Dad
Hi,

Thank yo so much for posting your progress. I wish you well in the days ahead. I am a two time survivor of cancer (Hodgkins and Colon) and have visited this site often to talk to the other semi colons. Recently my father was diagnosed (if you can call it that ) with something very similar to you. He is 87 and has some spots on his lungs and one on his liver. He had a colonoscopy and endoscopy the other day and everything turned out fine. He had cells in fluid drwan from his lungs as being cancer cells but of no particular type. He is debating whether it is worthwhile for him to do a "broad spectrum" chemo due to his age and whether it would drastically alter his quality of life. Are the drugs you are on typical of the treatment? My fathers complaints are mainly due to some difficulty breathing (which has been relieved by having the fluid drawn) and a lack of appetite. I believe he is going to be given something that will help with the appetite loss. I would be curious what your opinion would be of someone this age going through chemo. Knowing what I went through with Hodgkins (heavy duty chemo) and colon (mild in comparison) I am just not sure.

Cheers, Lance

Brettsvette

ldot123 said:

My Dad
Hi,

Thank yo so much for posting your progress. I wish you well in the days ahead. I am a two time survivor of cancer (Hodgkins and Colon) and have visited this site often to talk to the other semi colons. Recently my father was diagnosed (if you can call it that ) with something very similar to you. He is 87 and has some spots on his lungs and one on his liver. He had a colonoscopy and endoscopy the other day and everything turned out fine. He had cells in fluid drwan from his lungs as being cancer cells but of no particular type. He is debating whether it is worthwhile for him to do a "broad spectrum" chemo due to his age and whether it would drastically alter his quality of life. Are the drugs you are on typical of the treatment? My fathers complaints are mainly due to some difficulty breathing (which has been relieved by having the fluid drawn) and a lack of appetite. I believe he is going to be given something that will help with the appetite loss. I would be curious what your opinion would be of someone this age going through chemo. Knowing what I went through with Hodgkins (heavy duty chemo) and colon (mild in comparison) I am just not sure.

Cheers, Lance

PTUO
Hello Lance, and God's Love to you and your family

Thank you for the kind words and I have just infused round 8 today. I have another CT scan scheduled for this coming Monday (June 7th) and we will know what additional progress has been made. God Bless you as a cancer survivor and your testimony literally is the wind beneath the wings of those of us still battling world wide. I wish you many, many years of quality life and of cancer free health! You are a warrior. In regards to your Dad I would share a few observations and comments for what they are worth (which is probably not much, other than practical experience) I am not a medical doctor and cannot advise on anything as such.

Given the diagnosis of any "unknown primary origin" soft cell cancer, your father falls in the about 12-15% of cancers which are never fully identified (as I am told by my oncologist at MD Anderson) There are a lot of reasons for this, but part of the problem is they apparently do not leave typical blood born "tumor markers" as identified primaries do. This makes it difficult to track them back to their origins. Remember that any metastisized tumor is actually a tumor of the type from which it originated. Thus, if a known primary such as say, small cell lung cancer moves to the brain, the tumors growing there will be lung cancer tumors, not brain cancer tumors.


You mentioned he is 87 and has spots on his lungs and one on his liver. I am not sure how many spots or how large they are and whether or not it is present in his lymph system or anywhere else. Also, I am not sure if he has any co-morbidities in addition to his cancer. I guess I am trying to determine if he is suffering from anything in addition to the newly diagnosed unknown primary cancer. This is critical as it will definitely affect any decisions your father will want to make. There are some excellent drugs available to help with appetite stimulation and others for help in reduction of fluid load from the lungs. Typically, fluid loading occurs from either a systemic infection such as pneumonia, damage to the lungs from injury or invasive neoplasms, or even from congestive heart failure, wherein the heart is not able to move sufficient volumes of fluid through the kidneys to aid in ridding the body of excessive liquid. Usually, agents such as diuretics and/or heart aiding medicines designed to help the heart with its ejection fraction and or heart rate/blood pressure are employed when indicated.

My understanding of the tumors of unknown primary origin treatment is normally a "best guess" is made regarding what kind of chemo is employed, and how much and how often it is given. Chemotherapy is typically a weight based therapy, expressed in dose (in mg.) per meter squared of body mass. There are exceptions to the rule of course as there is a myriad of chemos available, all tailored to work their best given a specific tumor and a specific patient. It was decided that my cancer had an 75-80% likelihood of having originated in the biliary tract (bile duct) and the cisplatinum/gemzar therapy was thought to be likely the best known regimen to use. To date that has proven true. It is a heavy weight combo and not for everyone. Yes, it is deleterious to Quality of Life (QOL) and can have some bad side effects even in the best case scenario. ANY chemo may have side effects, some not so bad and some almost unbearable again depending on the individual, their overall health, the type and location of the cancer, and their use of other medications, their disabilities, etc.

If your Dad is in otherwise pretty good health and if he also doesn't have congestive heart failure and/or any other co-morbidites to deal with AND his overall QOL is good otherwise, he might want to discuss what type(s) of chemotherapy the oncologist recommends and specifically ask hard questions regarding the anticipated side effects (adverse reactions in pharma lingo) If he is suffering from any other problems, his care will be coordinated with his primary care physician and any other specialists he is seeing at this time. As you know, he needs to keep a positive frame of mind as do his caregivers. A lot of the fight comes from deep within us. I hope this little bit of information helps and please let me know how he proceeds.

God Bless you and keep up the good fight.

CB Finley
Tomball, Texas

Brettsvette

Brettsvette said:

PTUO
Hello Lance, and God's Love to you and your family

Thank you for the kind words and I have just infused round 8 today. I have another CT scan scheduled for this coming Monday (June 7th) and we will know what additional progress has been made. God Bless you as a cancer survivor and your testimony literally is the wind beneath the wings of those of us still battling world wide. I wish you many, many years of quality life and of cancer free health! You are a warrior. In regards to your Dad I would share a few observations and comments for what they are worth (which is probably not much, other than practical experience) I am not a medical doctor and cannot advise on anything as such.

Given the diagnosis of any "unknown primary origin" soft cell cancer, your father falls in the about 12-15% of cancers which are never fully identified (as I am told by my oncologist at MD Anderson) There are a lot of reasons for this, but part of the problem is they apparently do not leave typical blood born "tumor markers" as identified primaries do. This makes it difficult to track them back to their origins. Remember that any metastisized tumor is actually a tumor of the type from which it originated. Thus, if a known primary such as say, small cell lung cancer moves to the brain, the tumors growing there will be lung cancer tumors, not brain cancer tumors.


You mentioned he is 87 and has spots on his lungs and one on his liver. I am not sure how many spots or how large they are and whether or not it is present in his lymph system or anywhere else. Also, I am not sure if he has any co-morbidities in addition to his cancer. I guess I am trying to determine if he is suffering from anything in addition to the newly diagnosed unknown primary cancer. This is critical as it will definitely affect any decisions your father will want to make. There are some excellent drugs available to help with appetite stimulation and others for help in reduction of fluid load from the lungs. Typically, fluid loading occurs from either a systemic infection such as pneumonia, damage to the lungs from injury or invasive neoplasms, or even from congestive heart failure, wherein the heart is not able to move sufficient volumes of fluid through the kidneys to aid in ridding the body of excessive liquid. Usually, agents such as diuretics and/or heart aiding medicines designed to help the heart with its ejection fraction and or heart rate/blood pressure are employed when indicated.

My understanding of the tumors of unknown primary origin treatment is normally a "best guess" is made regarding what kind of chemo is employed, and how much and how often it is given. Chemotherapy is typically a weight based therapy, expressed in dose (in mg.) per meter squared of body mass. There are exceptions to the rule of course as there is a myriad of chemos available, all tailored to work their best given a specific tumor and a specific patient. It was decided that my cancer had an 75-80% likelihood of having originated in the biliary tract (bile duct) and the cisplatinum/gemzar therapy was thought to be likely the best known regimen to use. To date that has proven true. It is a heavy weight combo and not for everyone. Yes, it is deleterious to Quality of Life (QOL) and can have some bad side effects even in the best case scenario. ANY chemo may have side effects, some not so bad and some almost unbearable again depending on the individual, their overall health, the type and location of the cancer, and their use of other medications, their disabilities, etc.

If your Dad is in otherwise pretty good health and if he also doesn't have congestive heart failure and/or any other co-morbidites to deal with AND his overall QOL is good otherwise, he might want to discuss what type(s) of chemotherapy the oncologist recommends and specifically ask hard questions regarding the anticipated side effects (adverse reactions in pharma lingo) If he is suffering from any other problems, his care will be coordinated with his primary care physician and any other specialists he is seeing at this time. As you know, he needs to keep a positive frame of mind as do his caregivers. A lot of the fight comes from deep within us. I hope this little bit of information helps and please let me know how he proceeds.

God Bless you and keep up the good fight.

CB Finley
Tomball, Texas

Update Primary tumor of unknown origin
Thursday, June 17, 2010 2:44 PM, CDT

Well, here I am at MD Anderson and my cisplatin is now infusing following the gemzar and general hydration. Dr. Jassani just came by with results from yesterday's PET scan. Positron Emission Tomography as you recall measure the "uptake" of metabolic activity in areas of the body which take in a radioactive sugar (glucose) given prior to the imaging. It is expressed in units called SUVs. No, not a Ford Expedition, but a standard uptake value kind of SUV.

Generally speaking, anything between a 1 and a 3 or 4 is a sign of bodily processes requiring more energy (sugar uptake) than normal. Things like inflammatio​n, infection etc. can cause normal cells to take in additional sugar to battle the cause of whatever is going on. Additional sugar means additional cell metabolism is happening. Cancer is a rapidly dividing cell activity and hence it uses a LOT of glucose to do this. An SUV of 5 to 6 is a sign of malignancy and anything north of this number is clearly active, growing cancer.

My original PET done back in January showed an SUV range of 6.6 to 7.2 in the liver and signs of activity in the lymph system as well. Well, now there is NO sign of any cancer activity in the lymph or other systems and evidence of a stable disease in the liver tumor which remains stubbornly large at about 11cm across but now has values of between 3.3 and 6.2 in patchy areas within the tumor. There is some evidence of higher metabolic activity where the tumor was removed from the spine, but it is low and is likely just simple inflammatio​n still present following the surgery 5 months ago. This is probably just leftover healing there which takes time to "normalize".​

What happens next? Well, the chemo goes on for now with the chance of a short "holiday" from it maybe around the end of summer. IF the next round of CT/PET imaging shows NO evidence of any spreading of the disease (no new lesions) AND, the tumor in the liver remains stable in size and activity, then at the end of one year (January 2011) it is possible the tumor might be removed by a surgeon at that time if there is no sign of spreading disease. OR, maybe a liver transplant might be in order depending on SUV activity within the liver tumor at that time. No radiation will be used but perhaps a direct hepatic drip of chemo may be used to spot saturate the cancer.

belle99

Tumors of unknown origin
We are awaiting my husband's Dr to call us back on his diagnosis. They cannot seem to diagnosis what type cancer he has. We have been going for 6 month checjups since his colon cancer diagnosis in 2007. The CAT scan showed 3 lymph nodes, so they called us back for a PET scan and then a broncoscopy(sp) which the lymph biopsy came back positive. The ruled out lymphoma and also said that this was not a recurrance of prostate or colon cancer. It would seem that a tumor or lesion would show up on the chest x-ray, or one of the scans but no tumors or masses have shown. They are looking at maybe lung ca or cancer of unknown origin. We are a bit scared and the unknow is horrible. MD Anderson is a wonderful hospital, and we just hope they can diagnose this. Our Dr is going to prescribe a 9 week of chemo, once every 3 weeks,and maybe radiation. Brett: all of your comments have helped. Prayers are with you ona full recovery shirley

Brettsvette

belle99 said:

Tumors of unknown origin
We are awaiting my husband's Dr to call us back on his diagnosis. They cannot seem to diagnosis what type cancer he has. We have been going for 6 month checjups since his colon cancer diagnosis in 2007. The CAT scan showed 3 lymph nodes, so they called us back for a PET scan and then a broncoscopy(sp) which the lymph biopsy came back positive. The ruled out lymphoma and also said that this was not a recurrance of prostate or colon cancer. It would seem that a tumor or lesion would show up on the chest x-ray, or one of the scans but no tumors or masses have shown. They are looking at maybe lung ca or cancer of unknown origin. We are a bit scared and the unknow is horrible. MD Anderson is a wonderful hospital, and we just hope they can diagnose this. Our Dr is going to prescribe a 9 week of chemo, once every 3 weeks,and maybe radiation. Brett: all of your comments have helped. Prayers are with you ona full recovery shirley

Tumors of Unknown Origin
Hi Shirley

Sorry to be a bit recalcitrant in replying. I am currently on a "chemo holiday" for the next 4-6 weeks to allow my bone marrow to build up strength to take the chemo again for a while. I am sorry to hear of your husbands mysterious cancer diagnosis. With multiple lymph nodes showing positive signs of malignancy, it may be reasonable to assume his condition is one of the 12% or so of cancers which have no discernable origination.

It sounds like he did well in battling his original colon cancer 3 years ago. Was he treated with radiation/chemo then? Sometimes, unfortunately the combination of chemo and radiation can actually cause mysterious cancers later on. It is ironic to treat cancer with cancer causing agents and procedures but so goes modern medicine. I truly hope and pray for your husband and you as you proceed further. Some cancers are never fully diagnosed (such as mine) but are nonetheless treatable, even when recurrent. God bless you and your husband and mya the healing hands of Christ hold you both.

Brett

salliewaters

Brettsvette said:

Tumors of Unknown Origin
Hi Shirley

Sorry to be a bit recalcitrant in replying. I am currently on a "chemo holiday" for the next 4-6 weeks to allow my bone marrow to build up strength to take the chemo again for a while. I am sorry to hear of your husbands mysterious cancer diagnosis. With multiple lymph nodes showing positive signs of malignancy, it may be reasonable to assume his condition is one of the 12% or so of cancers which have no discernable origination.

It sounds like he did well in battling his original colon cancer 3 years ago. Was he treated with radiation/chemo then? Sometimes, unfortunately the combination of chemo and radiation can actually cause mysterious cancers later on. It is ironic to treat cancer with cancer causing agents and procedures but so goes modern medicine. I truly hope and pray for your husband and you as you proceed further. Some cancers are never fully diagnosed (such as mine) but are nonetheless treatable, even when recurrent. God bless you and your husband and mya the healing hands of Christ hold you both.

Brett

I am newly diagnosed CUP
I am newly diagnosed CUP with lymph nodes the only sign. Im fit and well so they are treating me as a breast cancer. I start chemo on Friday 15 October 2010 FEC T for 8 rounds so here we are and here we go. Got to keep on trucking. Hope everyone on here is getting through and feeling as well as can be.

Bro2

Brettsvette said:

Tumors of Unknown Origin
Hi Shirley

Sorry to be a bit recalcitrant in replying. I am currently on a "chemo holiday" for the next 4-6 weeks to allow my bone marrow to build up strength to take the chemo again for a while. I am sorry to hear of your husbands mysterious cancer diagnosis. With multiple lymph nodes showing positive signs of malignancy, it may be reasonable to assume his condition is one of the 12% or so of cancers which have no discernable origination.

It sounds like he did well in battling his original colon cancer 3 years ago. Was he treated with radiation/chemo then? Sometimes, unfortunately the combination of chemo and radiation can actually cause mysterious cancers later on. It is ironic to treat cancer with cancer causing agents and procedures but so goes modern medicine. I truly hope and pray for your husband and you as you proceed further. Some cancers are never fully diagnosed (such as mine) but are nonetheless treatable, even when recurrent. God bless you and your husband and mya the healing hands of Christ hold you both.

Brett

CUP (Best guess is bile duct)
Hi Brett,

I have not seen a post from you since August, so I hope you are doing well. My younger 38 year old brother was diagnosed in October with CUP, best guess bile duct cancer. He has a large tumor on his liver that has attached to his right adrenal gland. The adrenal gland has a 4cm "spot" on it. His liver enzymes are normal, no jaundice, no bowel problems other than constipation from pain meds, and he is generally in good health otherwise. Bile ducts are not obstructed. Docs have told him that the tumor is inoperable, and are trying to shrink it with chemo.

Your treatment sounds similar to his, at least initially, as he had his first chemo treatment of cisplatin and gemcitabine last Friday. He has been having nausea, and weight loss. Please let me know how you are doing, and please provide any advice that you could give to my brother going forward.

God bless,
Mark

Unknown

Bro2 said:

CUP (Best guess is bile duct)
Hi Brett,

I have not seen a post from you since August, so I hope you are doing well. My younger 38 year old brother was diagnosed in October with CUP, best guess bile duct cancer. He has a large tumor on his liver that has attached to his right adrenal gland. The adrenal gland has a 4cm "spot" on it. His liver enzymes are normal, no jaundice, no bowel problems other than constipation from pain meds, and he is generally in good health otherwise. Bile ducts are not obstructed. Docs have told him that the tumor is inoperable, and are trying to shrink it with chemo.

Your treatment sounds similar to his, at least initially, as he had his first chemo treatment of cisplatin and gemcitabine last Friday. He has been having nausea, and weight loss. Please let me know how you are doing, and please provide any advice that you could give to my brother going forward.

God bless,
Mark

This comment has been removed by the Moderator

Brettsvette

Bro2 said:

CUP (Best guess is bile duct)
Hi Brett,

I have not seen a post from you since August, so I hope you are doing well. My younger 38 year old brother was diagnosed in October with CUP, best guess bile duct cancer. He has a large tumor on his liver that has attached to his right adrenal gland. The adrenal gland has a 4cm "spot" on it. His liver enzymes are normal, no jaundice, no bowel problems other than constipation from pain meds, and he is generally in good health otherwise. Bile ducts are not obstructed. Docs have told him that the tumor is inoperable, and are trying to shrink it with chemo.

Your treatment sounds similar to his, at least initially, as he had his first chemo treatment of cisplatin and gemcitabine last Friday. He has been having nausea, and weight loss. Please let me know how you are doing, and please provide any advice that you could give to my brother going forward.

God bless,
Mark

Cancer of Unknown Primary
Dear Mark,

I apologise for having been absent for such a long time from the discussion boards here. That is my bad and unfortunately, my chemo brain has precluded my ready access to a number of key discussions I have been joining in on from time to time. I read about your brothers situation with great interest and concern since his is very similar in nature to mine with the notable exception of the adrenal gland involvement and that mine had metastasized to the bone. First, an update. I did finish 20 full rounds of the cisplat/gemzar by years end 2010. A serial PET and CT in mid January revealed no PET activity but some small suspicious spotting in the t9 vertebra, my rt lung and in my pelvic bone. We are not even sure they were cancerous, but given my history and the fact they had not shown up on prior CT scans, my oncologist decided to put me on a regimen known as GTX. My old buddy gemcitabine, taxotere (also known as docataxel) and Xeloda (the oral version of 5fu (florauracil). I started it in mid January and it was dosed in 14 day cycles via oral Xeloda two tablets bid with infusion of gemzar and taxotere on days 4 and 11 of each cycle then one week off to recover in between. It was a very harsh regimen and drove my blood counts into the toilet. I managed to struggle through 3 rounds of this regimen and now I am going in for PET and CT with contrast next Monday (March 28th) to see where we are now. I will try my best ot remember to post here when I hear the results. Once again, please forgive my prolonged absence Mark. On to your brother.. I am not sure if he is still on that regimen or not, but there are some meds which make a HUGE difference in controlling the nausia and emesis. It is a 3 prong approach and all 3 have to be used in conjunction. First, corticosteroid on the day of injection (usually decadron 10mg via injection into the line, and then followed by 5HT3 dosing of ondansetron (Zofran) or palinositron (Aloxi) and the addition of aprepitant (Emend) via either injection into the line or a 3 capsule regimen starting with a 125mg capsule about an hour before the chemo starts (VERY IMPORTANT) dont take it after the chemo is flowing or it wont do any good at all. I went through all of my chemo without ever having a single episode of nausea or emesis. Never. None. Talk with the oncologist and make double sure they are aware that you demand this anti nausea and anti vomiting protocol. It stands between full treatment or partial completion in many cases. Platinum is very, very rough stuff and Gemzar is not much better and added together they are quite the pair. I helped develop and bring to market some of these drugs so believe me I know them very, very well. God Bless you and yours Mark and God Bless your brother and all the caregivers who afre helping him battle on. My personal email is brettsvette@hotmail.com if you want to write me there. Brett

Brettsvette

salliewaters said:

I am newly diagnosed CUP
I am newly diagnosed CUP with lymph nodes the only sign. Im fit and well so they are treating me as a breast cancer. I start chemo on Friday 15 October 2010 FEC T for 8 rounds so here we are and here we go. Got to keep on trucking. Hope everyone on here is getting through and feeling as well as can be.

CUP and your treatment
Hi Salliewaters

God Bless you and I hope your treatment is going well. Please tell us how you are doing and what is going on. FIGHT. FIGHT. FIGHT.

Brett

LaundryQueen

Brettsvette said:

Cancer of Unknown Primary
Dear Mark,

I apologise for having been absent for such a long time from the discussion boards here. That is my bad and unfortunately, my chemo brain has precluded my ready access to a number of key discussions I have been joining in on from time to time. I read about your brothers situation with great interest and concern since his is very similar in nature to mine with the notable exception of the adrenal gland involvement and that mine had metastasized to the bone. First, an update. I did finish 20 full rounds of the cisplat/gemzar by years end 2010. A serial PET and CT in mid January revealed no PET activity but some small suspicious spotting in the t9 vertebra, my rt lung and in my pelvic bone. We are not even sure they were cancerous, but given my history and the fact they had not shown up on prior CT scans, my oncologist decided to put me on a regimen known as GTX. My old buddy gemcitabine, taxotere (also known as docataxel) and Xeloda (the oral version of 5fu (florauracil). I started it in mid January and it was dosed in 14 day cycles via oral Xeloda two tablets bid with infusion of gemzar and taxotere on days 4 and 11 of each cycle then one week off to recover in between. It was a very harsh regimen and drove my blood counts into the toilet. I managed to struggle through 3 rounds of this regimen and now I am going in for PET and CT with contrast next Monday (March 28th) to see where we are now. I will try my best ot remember to post here when I hear the results. Once again, please forgive my prolonged absence Mark. On to your brother.. I am not sure if he is still on that regimen or not, but there are some meds which make a HUGE difference in controlling the nausia and emesis. It is a 3 prong approach and all 3 have to be used in conjunction. First, corticosteroid on the day of injection (usually decadron 10mg via injection into the line, and then followed by 5HT3 dosing of ondansetron (Zofran) or palinositron (Aloxi) and the addition of aprepitant (Emend) via either injection into the line or a 3 capsule regimen starting with a 125mg capsule about an hour before the chemo starts (VERY IMPORTANT) dont take it after the chemo is flowing or it wont do any good at all. I went through all of my chemo without ever having a single episode of nausea or emesis. Never. None. Talk with the oncologist and make double sure they are aware that you demand this anti nausea and anti vomiting protocol. It stands between full treatment or partial completion in many cases. Platinum is very, very rough stuff and Gemzar is not much better and added together they are quite the pair. I helped develop and bring to market some of these drugs so believe me I know them very, very well. God Bless you and yours Mark and God Bless your brother and all the caregivers who afre helping him battle on. My personal email is brettsvette@hotmail.com if you want to write me there. Brett

Neuropathy from platinum chemo
Brett

I have completed five carboplatin chemo treatments for ovarian cancer...I came over to this discussion board just out of curiosity.

After reading your post, I am wondering if you have any neuropathy from the chemo. I seem to have had good results from using B6 and alpha lipoic acid as I have had transient neuropathy initially but now am doing well.

Thank you for your willingness to share your knowledge and your experience.

Best wishes,

Louise

Brettsvette

LaundryQueen said:

Neuropathy from platinum chemo
Brett

I have completed five carboplatin chemo treatments for ovarian cancer...I came over to this discussion board just out of curiosity.

After reading your post, I am wondering if you have any neuropathy from the chemo. I seem to have had good results from using B6 and alpha lipoic acid as I have had transient neuropathy initially but now am doing well.

Thank you for your willingness to share your knowledge and your experience.

Best wishes,

Louise

PTUO
Hello dear Louise


First, I wish you an expedient and complete remission ASAP and good health to return to you quickly. God bless you in your ongoing treatments. As you know, any form of platinum is capable of producing untoward side effects not limited to but including renal toxicity, auditory problems including hearing loss and neuropathies. Yes, I have experienced neuropathy, mostly in the form of hand/arm tremors especially as I go to bed and begin to enter sleep as reported by my wife. Oddly, it does not manifest while I am awake for some reason. I also have experienced weakness of the left thigh muscle particularly following infusion and for the next few days afterwards. Sometimes my feet do not fall exactly right and I tend to lose my balance easier than before so I have to exercise extreme caution when moving about. Fortunately, I have learned that most of the neuropathies should dissipate and pass with time upon completion of therapy. It can take upwards of 4 to 6 months to completely normalize however. Best of luck and KEEP FIGHTING Louise!!!

Brett