Symptoms & Paraneoplastic syndrome
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Thanks for the responses. You’ve helped make sense of some of the things I’ve been sorting through.
It helps to know we aren’t alone.
Hi Nikki, I totally understand what you are saying as far as severe cognitive loss after diagnosis and chemo. At first we attributed my husband’s fogginess to chemo brain after a lengthy dose of GEM/CIS following his liver resection. It has now been 18 months since his surgery and chemo and his cognitive processes are still significantly decreased. This has caused a very deep depression to set in since he has always, prior to diagnoses, been as sharp as a tack. His inability to navigate his smart phone, computer, crossword puzzles, retrieve names, directions, etc. have prompted his doctors to suggest neurological testing for Alzheimers. We had scheduled this test twice and twice cancelled as the anxiety associated with “not knowing simple answers” became overwhelming to him. We didn’t see a real benefit to having a diagnosis, only drawbacks such as limitations to his independence.
We have not received a diagnosis of paraneoplastic syndrome and after cursory skimming a few websites, don’t feel that this relates to John.
He is taking meds for anxiety and depression which have helped some but his fogginess remains. I totally understand your concern and frustration as shown in your statement, “It’s like we lost him before we lose him”. I feel the same way, but as I told my husband, I’d rather have a foggy husband that no husband. With nine years age difference, he took such good care of me when we first married, it is now my turn to care for him. I am honored to do so but that doesn’t mean that at times I become impatient or frightened at the impact on his life. Tell your mom to remember to care for herself when she can. Find the simple things that they can do together. With John and me, it is gardening or sometimes just sitting in the garden, watching the sunset, talking in the dark. I tell him that I didn’t marry him for his brain. I married him for his heart…and that beats strongly and with passion for family and friends.
God bless you and your family. Stay positive if at all possible, and be good to yourselves.
Best wishes,
MelindaNuclearNikki,
I read through both of your posts about your dad, and I am so very sorry that he has been diagnosed, and to hear of the struggles he and your family are having. I understand completely, as my mother in law (who was 61 when she was diagnosed and passed away from cholangiocarcinoma) experienced a steady decline in cognition as well. It was something that she noticed, but she just didn’t understand what was happening and it was very hard. I feel that her very first symptoms of this cancer were periods of forgetfulness, depression, “fogginess”, etc. a full year or more prior to diagnosis. These symptoms did progress, even wax and wane at times after her treatment started and she became more ill.
Your dad may also be experiencing depression. Men may exhibit depressive symptoms differently than women…..such as the “grumpiness” you mentioned.Some of the symptoms you are describing in your dad may be due to the chemotherapy as well, which can cause something that those who get chemo, or give chemo call “chemo-brain”. It’s forgetfulness, fatigue, a lack of mental sharpness, that sort of thing. It should pass after he has a bit of a chemo break.
You said your dad also had tumors in his lungs, and outside of his liver near his stomach. I know professionally as an oncology nurse, I have seen paraneoplastic type symptoms occur in those who have cancer involvement in the lungs, liver, and peritoneal cavity (in the abdomen).Now to try to explain what your dad’s oncologist is talking about with having to stop the Gem/Cis due to toxicity…..chemotherapy drugs do often adversely affect the recipient’s body. Gemzar can cause shortness of breath (dyspnea), or a chronic cough that worsens. It can also affect the liver and kidneys, although you said his liver/kidney function was ok.
As for Cisplatin, this chemotherapy drug is from the platinum family of chemo drugs. It most definitely affects the kidneys, so I am glad to hear that your dad’s kidney function is ok. It can also be neurotoxic causing symptoms (which may be permanent) such as numbness and tingling of the hands/feet, decreased balance, loss of strength, muscle cramps, pain,etc. These symptoms will be seen in many people receiving Cisplatin, but especially when the person has received what we call a cumulative dose beyond 400 mg/m2. (dosing of chemotherapy drugs are done based on weight, and body surface area, and other factors). Your dad may be very close, or over that dose limit leading to the oncologist stopping treatment at this time because more of the cisplatin would hurt your dad.The nurses and the oncologist may have noticed symptoms too that indicate your dad is experiencing toxicity from these drugs, and deemed it necessary to stop at this time as more of this chemo would cause more damage which would seriously impact quality of life for your dad. He may also have blood counts that are not improving quickly after treatments, such as white blood cell (WBC) counts, platelets, hemoglobin or hematocrit. If a person receiving chemo has low WBCs, they are very prone to developing dangerous infections. If they have low platelets (especially from the cisplatin) they may bleed and not be able to clot like normal. Low hemoglobin and hematocrit may cause him to be short of breath, fatigued, pale, and so on.
I cannot say for sure the toxicity that your oncologist is speaking of, but I’m guessing it’s the cumulative dose of the Cisplatin. The best thing to do, of course, is to ask him/her, or the infusion nurses. They are there to help, and as Lainy mentioned, maybe you (or another family member) should offer to go along to the next visit. Write questions down prior to the visit so that you are organized and prepared. Demand time with the doctor, your dad’s time is valuable too!
It’s great though to hear that your dad has an appointment for a second opinion/clinical trial. I wish him well and hope he is able to be enrolled!
Please keep us posted!
-Karen D.
Hi guys –
I’m new here, so apologies, but I can’t find a similar topic.My dad has stage 4 CC, dx in April 2015.
Something that surprised me so much about cancer was his decline in mental function. It’s like living with someone who has Alzheimer’s. There are no mets to his brain, but he is foggy, forgetful, clumsy. He forgets to turn off the stove. Isn’t sure how to find his football game on TV. Can’t focus his eyes to read the paper. Doesn’t talk as much and when he does he’s GRUMPY. He doesn’t remember things we’ve discussed, gets focused on one topic and can’t let go.
It’s like we’ve lost him before we lose him. In some ways its hard and some ways it’s easier I guess. But it’s sad. Very stressful for my mom, she fights it so hard.
It’s probably not only this cancer, but I feel like I never hear it discussed. The doctor says it is a form of Paraneoplastic syndrome, the chemicals/hormones/etc that are basically generated by the tumor itself float around in the bloodstream and affect the rest of the body.
Anyone else have experience with this, or had their doctor mention it?
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