One patient with glioblastoma still alive nine years later
by jillian on Fri Aug 15, 2008 12:00 AM
by mihalo on Sat Aug 16, 2008 12:00 AM
Please tell us more.
by jillian on Sat Aug 16, 2008 12:00 AM
Well my father was diagnosed with colon cancer approximately 5 years ago. He had the tumor removed from his colon and received preventive chemotherapy for any lingering cells. He was supposed to be closely monitored by his oncologist for the remaining years. However, one year after the original colon cancer, he started acting strange, losing his balance, intermittent falling, being frustrated and yelling, which is not something my father does, was a very patient man, etc. His oncologist said he needed to see a neurologist. He went to numerous neurologist with misdiagnoses such as early Alzheimers, demetia, etc. One neurololgist that my sister met while working at an ER told my sister that it sounded like my father had this paraneoplastic syndrome. He called my father's oncologist and suggested that my father's cancer had returned. The oncologist said that "I can reassure you this man does not have cancer", all the while his CEA levels were creepingly elevating. It took about four years before we had found this doctor who discovered it. He demanded that his oncologist due a PET scan to rule out cancer. When we got the results, my father had tumors throughout his abdomen, liver and spots on his lungs. We are still in shock. My father never missed an appointment with blood work and colonoscopies every six months. This oncologist was ignoriing his blood work and let my father slip through the cracks. The paraneoplastic syndrome has caused him to become blind in one eye, and the other eye locks sometimes because the cells have attacked his eyes, brain, and all other parts of his body. The good cells tried there best to kill the cancer cells, but in return started killing the good cells too and does not stop. Once the damage is done, it is permament and only gets worse. He just finished his chemo for the stage IV colon cancer with this paraneoplastic syndrome, which has been very difficult with this neurologic disorder (which is a cancer related disorder). He is weak, can hardly walk, cannot feed himself, do daily living activites, such as bathing, brushing teeth, bathroom, etc. Most horrible thing a family would have to go through. We are outraged that this oncologist sat by and did nothing when the neurologist mentioned the paraneoplastic syndrome. If she would have listened, my father might have survived this cancer at least for a few more years, but with the neurological disorder along with it he is going down fast.
Thank you for responding to my message.
On 8/16/2008 mihalo wrote:Jillian,Please tell us more.regards mihalo
by Chigirl_1 on Sat Aug 16, 2008 12:00 AM
A paraneoplastic syndrome is a disease or symptom that is the consequence of the presence of cancer in the body, but is not due to the local presence of cancer cells. These phenomena are mediated by humoral factors (by hormones or cytokines) excreted by tumor cells or by an immune response against the tumor. Paraneoplastic syndromes are typical among middle aged to older patients and they most commonly present with cancers of the lung, breast, ovaries or lymphatic system (a lymphoma). Sometimes the symptoms of paraneoplastic syndromes show even before the diagnosis of a malignancy
There are several different syndromes that are considered to be paraneoplastic, and there are four categories that they can fall into, one of them being neurological. It is true that these symptoms can show up before a diagnosis of cancer is made and should always be taken seriously as possibly indicative of cancer.
I am so sorry that this has happened to your father and your family. May God's love surround you.
On 8/16/2008 Chi-girl wrote:A paraneoplastic syndrome is a disease or symptom that is the consequence of the presence of cancer in the body, but is not due to the local presence of cancer cells. These phenomena are mediated by humoral factors (by hormones or cytokines) excreted by tumor cells or by an immune response against the tumor. Paraneoplastic syndromes are typical among middle aged to older patients and they most commonly present with cancers of the lung, breast, ovaries or lymphatic system (a lymphoma). Sometimes the symptoms of paraneoplastic syndromes show even before the diagnosis of a malignancyThere are several different syndromes that are considered to be paraneoplastic, and there are four categories that they can fall into, one of them being neurological. It is true that these symptoms can show up before a diagnosis of cancer is made and should always be taken seriously as possibly indicative of cancer. I am so sorry that this has happened to your father and your family. May God's love surround you.
I understand all of that. Have read it a thousand times, but the paraneoplastic syndrome is suggestive of a cancerous tumor in the body. Like I said before, the good cells are killing off other cells, trying to fight bad cells if they are present or not, the cells do not know they are killing the good or bad cells. It is in response to the tumor which is directly related with the presence of cancer in the body. I was simply trying to word it in a way that everyone would understand what happened to my father.
Thank you for your concern about my father and family. You know this is a hard time to have faith, though. Either way if he would have survived the cancer, the paraneoplastic syndrome would be the death of him. There is no way to stop it now. But, like I said, had the cancer been caught early, which it should have been, an infusion could have stopped the paraneoplastic syndrome. He would just have to have infusions regularly, but would have been worth it. They did try the infusion once, but four years after was very much too late.
I just want everyone to know about this because if they have a loved one who is having these strange symptoms, whether they have ever had cancer or not in the past, they need to have these tests done for it before it is too late.
Thank you for the information and responding to my posting. I am so depressed, I feel we are near the end.
by pandaface on Fri Nov 27, 2009 09:46 PM
when i read your story it was like a mirror image to what we have been going thro for three months with our dad age 72. otherwise a very fit and active self sufficient individual man until 3 months ago out of the blue he suffered a seizure. never had one before in his life. It resulted in short term memory loss,disorientation,hallicinations,slurred speech,agitation,aggression.We took him to hospital and they did test after test after test,nothing,then they found he had sclc. They had shown up a shadow on his lung at first admttance but chose to ignore it.
He has suffered more and more seizures and is now in thehospice.
thanks to the local hospitals delay in diagnosis of sclc and reluctance to test for paraneoplstic syndrome he is now too unwell to have any chemo or the like.
i have requested that my dads case be referred to a neuro oncologist who has experience of pns and who specialises in the neurological effects of cancer,but they chest doctor,neurologist and oncologist say it would be pointless and i have to face the fact that we may never know why my dad has gone this way,and so fast.
All i want is to find out if he has pns or if his neurological decline is something totally independent of the sclc.
Its like you say,this condition affetcs less than 1% of the population diagnosed with cancer and yet its different when your dad is that 1%
by Dominiquec on Sun Jan 20, 2013 11:07 PM
by retirednurse111 on Wed Jan 23, 2013 12:26 AM
On Aug 15, 2008 12:00 AM jillian wrote: I was wondering if anyone has ever heard of paraneoplastic syndrome and why do you think it is not listed here? Because it should definitely be. It is very much related with cancer, a very serious condition and if not caught within a few weeks of having most common types of cancer, it progressively kills all of your good cells and leaves you with a severe neurologic disorder with no cure along with the cancer. Your good cells immediately start fighting against any tumor in your body, but there is something in some patients that will cause it to continue even after the cancer is diagnosed, which could be years, because you don't know what it is even under the care of an oncologist. By the time it is diagnosed it is too late because not enough people know about it. It happens in 1% of cancer patients, and unfortunately that 1% is my father.
On Aug 15, 2008 12:00 AM jillian wrote:
I am so sorry to hear of your Mother...........I just lost a good friend to paraneoplastic syndrome. She survived her original cancer (leukemic type) and 3 years later developed this syndrome.
She sought opinions from Mayo and KU............mega steroids.
Sorry to say she went blind and shortly lost all of her ability to move at all.
Its horrid............I will pray for your Mother, and God Bless Both of You.....Fran (trying to survive colorectal cancer) please read my last comment.
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