Primary tumors of unknown origin

josever

Brettsvette said:

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

Adenocarcinoma of unknown primary
Dear Brett and Friends:

After 12 months, my wife (Laura) continues the fight (metastatic adenocarcinoma of unknown primary). After 5 months of chemotherapy in 2010, Laura enrolled in Phase-1 clinical trials (MD Anderson Cancer Center, Houston, TX).

The first was unsuccessful, and we just learned that 2nd didn't work. Oncologist indicated that Laura may not be eligible for other trials due to liver condition (multiple tumors have grown and blocking bile ducts, resulting in high levels of Bilirubin).

To prevent further tumor growth, oncologist plans to administer Irinotecan directly to the liver, followed by general chemotherapy (Herbatox +Avastin). What frightens me - oncologist indicated that if this treatment is not successful, there may be no further treatment options at MD Anderson.

What keeps us up at night is that this disease has progressed despite standard therapy and that no standard therapy exists. I am reaching for advice.

Thank you for listening- Jose

Brettsvette

josever said:

Adenocarcinoma of unknown primary
Dear Brett and Friends:

After 12 months, my wife (Laura) continues the fight (metastatic adenocarcinoma of unknown primary). After 5 months of chemotherapy in 2010, Laura enrolled in Phase-1 clinical trials (MD Anderson Cancer Center, Houston, TX).

The first was unsuccessful, and we just learned that 2nd didn't work. Oncologist indicated that Laura may not be eligible for other trials due to liver condition (multiple tumors have grown and blocking bile ducts, resulting in high levels of Bilirubin).

To prevent further tumor growth, oncologist plans to administer Irinotecan directly to the liver, followed by general chemotherapy (Herbatox +Avastin). What frightens me - oncologist indicated that if this treatment is not successful, there may be no further treatment options at MD Anderson.

What keeps us up at night is that this disease has progressed despite standard therapy and that no standard therapy exists. I am reaching for advice.

Thank you for listening- Jose

PTUO Laura and Jose
Jose

You may find some additional information here which may supply some insight. I have found little on specific studies per se, but I would think the oncologist would be able to enlighten you on the basis of their selection and what type of outcomes they are expecting or hoping to observe. God bless. http://www.ehealthme.com/irinotecan-Avastin-3859703

Brett

Brettsvette

josever said:

Adenocarcinoma of unknown primary
Dear Brett and Friends:

After 12 months, my wife (Laura) continues the fight (metastatic adenocarcinoma of unknown primary). After 5 months of chemotherapy in 2010, Laura enrolled in Phase-1 clinical trials (MD Anderson Cancer Center, Houston, TX).

The first was unsuccessful, and we just learned that 2nd didn't work. Oncologist indicated that Laura may not be eligible for other trials due to liver condition (multiple tumors have grown and blocking bile ducts, resulting in high levels of Bilirubin).

To prevent further tumor growth, oncologist plans to administer Irinotecan directly to the liver, followed by general chemotherapy (Herbatox +Avastin). What frightens me - oncologist indicated that if this treatment is not successful, there may be no further treatment options at MD Anderson.

What keeps us up at night is that this disease has progressed despite standard therapy and that no standard therapy exists. I am reaching for advice.

Thank you for listening- Jose

PTUO Laura and Jose
My dear friend Jose,

I am grateful that you have shared the update regarding the courageous battle of your lovely bride. metastatic adenocarinomas are a tricky breed to treat even when the adenocarcinoma is of a known variety. When they are unknown it is all the more difficult to find the appropriate combination of agents which show resistance to their aggressive nature. Since it is apparent Laura was already stage IV upon diagnosis, I have to assume she had at least two and probably more metastatic lesions upon initial examination.

I am sorrowed that she did not initally respond to the courses of chemotherapy she had in 2010. Several people do not respond to intial treatments and often they may not respond to secondary treatments either. For all of the science involved there is still a degree of uncertainty in choosing what combination and at which doses which achieve the ideal balance of killing the cancer without fatally dosing the patient or causing massive and irrepairable damage to vital organs. I have read about direct hepatic dosing of Irinotecan but not that which is followed by the combination of herbatox/avastin. I am praying that this will do the trick and force her aggressive cancer into remission quickly and effectively. God bless you and God bless Laura. My cancer does seem to be responding over twenty or so rounds of cisplatnum/gemzar in 2010 and now another 5-8 rounds and counting of gemzar/taxotere/Xeloda (oral 5 fluorouracil) in 2011. We noted that the primary and HUGE tumor in my liver did appear to be knocked completely out from a PET scan persepective upon the last serial scans performed about 3-4 weeks ago. Dormant from a metabolic standpoint anyway. We lift you and Laura up in our prayers and our thoughts and please, please may this treatment be successful.

Brett

dayemdom

Brettsvette said:

PTUO Laura and Jose
Jose

You may find some additional information here which may supply some insight. I have found little on specific studies per se, but I would think the oncologist would be able to enlighten you on the basis of their selection and what type of outcomes they are expecting or hoping to observe. God bless. http://www.ehealthme.com/irinotecan-Avastin-3859703

Brett

Dear Brett,
My mom had back
Dear Brett,

My mom had back pain for few months and was treated with physical therapy until an MRI revealed tumors in her back bones that were pressing on the nerves. She had a surgery on February 7th to remove the bone mets. The surgeon couldn't remove all the tumors because they were very close to the spine. The biopsy came back inconclusive and after running a bunch of other tests she was diagnosed with a poorly differentiated adenocarcinoma of unknorn primary. In addition to the bone mets in her back she had two small nodules in her lungs. Two oncologists evaluated her case,one of them is at MD Anderson, they both supsect the primary tumor to be in her ovaries but can't confirm that.

She had 10 radotherapy sessions in march and finished 4 weeks ago. The radiotherapy didn't releive the back pain as expected and also the last week or so she started feeling pain in the neck area. The pain radiates from the neck down to her lower back. My mom is still working and she told us that usually she is feeling better at work but she feels worse in the evening after she takes a nap and on the weekends.
We saw the oncologist on Thursday to start chemo as planned but he said that he needs to check the pain in her neck first because it is new. He ordered an MRI and we are going to see him on Tuesday to make a treatment plan.

Brett, I know that you also had radiotherapy and was wondering if the treatment was effective and if you have felt some pain in your back after the radio and for how long.

We are very worried that we may be going very slow since she was disgnosed in Feb and we haven't started chemo yet. I appreciate any comment or advice you may have about my mom's treatment and pain.

Dana,

Brettsvette

dayemdom said:

Dear Brett,
My mom had back
Dear Brett,

My mom had back pain for few months and was treated with physical therapy until an MRI revealed tumors in her back bones that were pressing on the nerves. She had a surgery on February 7th to remove the bone mets. The surgeon couldn't remove all the tumors because they were very close to the spine. The biopsy came back inconclusive and after running a bunch of other tests she was diagnosed with a poorly differentiated adenocarcinoma of unknorn primary. In addition to the bone mets in her back she had two small nodules in her lungs. Two oncologists evaluated her case,one of them is at MD Anderson, they both supsect the primary tumor to be in her ovaries but can't confirm that.

She had 10 radotherapy sessions in march and finished 4 weeks ago. The radiotherapy didn't releive the back pain as expected and also the last week or so she started feeling pain in the neck area. The pain radiates from the neck down to her lower back. My mom is still working and she told us that usually she is feeling better at work but she feels worse in the evening after she takes a nap and on the weekends.
We saw the oncologist on Thursday to start chemo as planned but he said that he needs to check the pain in her neck first because it is new. He ordered an MRI and we are going to see him on Tuesday to make a treatment plan.

Brett, I know that you also had radiotherapy and was wondering if the treatment was effective and if you have felt some pain in your back after the radio and for how long.

We are very worried that we may be going very slow since she was disgnosed in Feb and we haven't started chemo yet. I appreciate any comment or advice you may have about my mom's treatment and pain.

Dana,

PTUO Back pain
Hello Dana,

Your mother's findings seem very very similar to mine as far as the presentation of the tumor and a finding of poorly defined adenocarcinoma. My tumor was originally located across the t2, t3 and t4 vertebrae which puts it roughly between the shoulder blades on my right side. My other tumor burden was in the liver and the lymph nodes of the abdomen however.

I wish I could report that the pain from the spinal surgical site went completely away, but that is not the case. To this day I feel pain to differing degrees from that area dependent on how I sleep on it, how long I have to sit up straight, etc.etc. They did radiate the margins of the surgical site as a precaution and that resulted in my upper gut being quite painful for a time following the radiation. That pain has mostly subsided now that I am over a year out from it. Because the spine is the primary nerve highway for our bodies it is a tricky place to perform surgery to begin with. Your mother sounds like a strong person however, and like me she has chosen to continue working. I commend her for her bravery and will to continue in the face of adversary.

I am very curious to see why she is having pain in the neck. Please let us know what the scans find and God Bless you and your mother as you move ahead with treatment.

Brett