Char81062 Posted August 31, 2006 Share Posted August 31, 2006 Hello Everyone, My Mom was dx with sclc in May and has undergone 3 treatments of Chemo. She postponed the 4th because she was very weak and will resume next week. She has an appt with a radiology oncologist (for a brain met)to start a course of radiation next Wednesday. She has started to experience not being able to comprehend what you are saying. In other words, she will hear what you said and can repeat it if the sentence is not too long, but if you talked at a normal rate of speed she might take 20 seconds to be able to understand what you just said. She said it has happened more in the last few days and it has scared her. The Dr said it could be caused by a number of different things, her medication, she might be having a mini seizure or the tumor in the brain. Has anyone had experience with this? It is really freaking me and my Mom out!! Thanks for your help. God Bless this message Board!!! -Char Quote Link to comment Share on other sites More sharing options...
lisag Posted August 31, 2006 Share Posted August 31, 2006 Hi Char--I won't say this is "normal" becuase I am not sure, but my father went thru that too. He's in remission from SCLC right now. Especially in the beginning of his treatment, when so much was going on, he was a lot like your mom is now. It got better. I think for him it was just that everything was so overwhelming, it took him longer to process. I wish the same for you and your mom. Lisa Quote Link to comment Share on other sites More sharing options...
kamataca Posted August 31, 2006 Share Posted August 31, 2006 I don't know anything about this, Char, but I will pray for you and your mom. I hope his gets resolved soon. Kelly Quote Link to comment Share on other sites More sharing options...
teresag Posted September 1, 2006 Share Posted September 1, 2006 Char - She may have what is commonly called "chemo brain." Chemotherapy has effects on thinking, attention span and comprehension that can persist after the chemo is done. Of course, more serious reasons, such as metastasis must be ruled out first. There are no drugs to treat chemo brain, but one study by Cimprich showed that interaction with nature (birdwatching, gardening, walking in the park, etc.) improved attention in women with breast cancer. My guess is that it works the way meditation works; by diverting the brain from worry and symptoms and allowing it time to "reboot" in some way. (My best guess - no one really knows why these methods work.) Lots of useful information on cancer & cognitive dysfunction can be found here: http://www.cancersymptoms.org/cognitive ... ndex.shtml Best wishes to you, Teresa Quote Link to comment Share on other sites More sharing options...
peacelover Posted September 4, 2006 Share Posted September 4, 2006 Hey Char- First of all please know I am sending you hugs and strength-cancer effects everyone and this is a tough time for your whole family i know. My mom has had three seperate instances of brain metastases and all have caused some degree of abnormal behaviour. The first 16 lesions when the original tumor was found had her doing things like, adding extra zeros to the checks she was writing, having conversations with me as if I were my sister although I was sitting right in front of her and things of that nature. Radiation took care of these and all symptoms stopped. That was 8 years ago. The second 4 tumors were positioned so that they put pressure on the places in her brain that control movement and speech and cognitive thought process. We first saw these when she was in remission from the LC and it freaked us all out. Her especially-she would be walking and suddenly stop and look at me and say-'it seems as if my brain cannot remember how to take the next step Melissa can you help me out' or that she would be in mid-sentence and forget where she was at in the sentence, shake her head and start over again. Reversing words in speaking, reversing letters in her writing that sort of thing-PET confirmed the new growth and she underwent cyberknife surgery which killed all the tumors. That was 2 years ago and again all symptoms stopped after surgery. In March of this year she started with it just seeming as if she could not keep up with the conversation-it taking a while for her to respond and actually looking as if she was having a hard time processing information. Then started with the forgetting where she was at physically or why she was there. We thought this was just years of treatment taking their toll on her mind and body until she started having moments of partial blindness and stumbling while she was walking, not being able to coordinate her limbs to get up off the sofa-MRI confirmed 3 new tumors-laser and chemo and these are gone now too.... I am not sure about your moms docs-my moms docs said that at least a part of it was from the pressure the tumor put on that area of the brain and the extra fluid accumulation around the area. Another option was a side effect from chemo and rads and just being plain tired from all the treatment. Mom still has 'tired brain' she calls it where she has a hard time keeping up with fast moving conversations even though her tumors are gone, docs say this is from so much treatment and once her body rests she may overcome this, may be that so much rads damaged some vital piece of brain matter too-there is no way to really pinpoint it. Talk to the doctor and be patient with your mom. Encourage her by letting her know that this and all conditions of treatment are temporary. Let her know that it is okay to have 'tired brain' given everything she is fighting and that this new symptom will pass...we all have a sense of humor about it now and this seems to help us too.....if your mom is willing to try something new look up essiac tea online. It seemed to help my mom-I made it at home so don't spend tons of money on it-the herbs cost about 5 bucks...anyway, mom's chemo and rads symptoms were relieved by this tea. Not much advice sorry, just wanted you to know that you are not alone-I wholly understand your freak out factor. It is upsetting to see your parent not be your parent and it feels even worse to not be able to help them-it can get better! Strength to you Char -Melissa Quote Link to comment Share on other sites More sharing options...
RandyW Posted September 4, 2006 Share Posted September 4, 2006 Chemo-Radiation Necrosis Re : Radiation Necrosis -- gdpawel Posted by gdpawel , May 29,2001,23:42 Post Reply Top of Thread Forum -------------------------------------------------------------------------------- Brain metastasis is a rare complication of ovarian cancer with only 67 well documented cases in literature. A multi-institutional study of 4027 ovarian cancer patients over 30 years identified only 32 cases while an autopsy study of ovarian cancer reported an incidence of 0.9%. Leptomeningeal metastasis is also a rare complication of ovarian cancer with only 14 cases reported by 1994. The treatment method recommended for brain metastases of large solitary tumors exceeding 2cm in diameter is surgical resection followed by 5 fractions(at 2.0gy per) of focal radiation to the local tumor bed. My wife received the 5 fractions plus an additional 20 fractions of Whole Brain radiation(at 2.0gy per). Mindful, these were well within the tolerable limits of up to 55gy but radiated to the whole brain. The optimal dose of radiation necessary to destroy microscopic foci of tumor after surgical resection of a single brain metastasis is unknown. Whole Brain Radiation induces neurological deterioration that is progressive and often irreversible. It results from direct injury to brain tissue and blood vessels. The risk increases with higher total dose, higher dose per fraction and with concomitant use of neurotoxic chemotherapeutic agents. Chemotherapy affects both normal and tumor cells. The effect on normal cells is the cause of side effects from chemotherapy. Some chemotherapy drugs do permeate(pass through) the blood brain barier(the system that protects the brain from foreign substances by blocking their passage from the blood). The group of drugs called nitrosoureas like Cisplatin, Cisplatinum or Carboplatin are such drugs and natural substances such as Taxol, also cross the barrier. My wife had previous chemotherapy treatments of Taxol and Carboplatin. Necrotizing leukoencephalopathy is the form of diffuse white matter injury that follows chemotherapy, as well as a suppressed immune system. The body's immune system attacks and eliminates not only bacteria and other foreign substances but also cancer cells. Cancer cells are not foreign to the body but their biological function has been altered in that it doesn't respond to the body's normal mechanisms for controlling cell growth and reproduction. Cancer is 100 times more likely to occur in people who take drugs that suppress the immune system than in people with normal immune systems. My wife almost didn't make it through her chemotherapy treatments. She could only receive five of the six intended treatments. We met a number of other patients that didn't make it through their chemotherapy treatments. The clinical manifestations of Radiation Necrosis range from mild cognitive neurological impairment to dementia to death. Radiation Necrosis occurs more commonly after radiosurgery but can occur after conventional Whole Brain Radiation therapy as well. The major complication of radiosurgery is the development of symptomatic Radiation Necrosis requiring prolonged administration of steroids and reoperation. The rate of reoperation is 30%-40%, usually within six months. Radiation Necrosis is common with Whole Brain Radiation dosages beginning at 50gy, although frequency of Radiation Necrosis is anywhere from 2%-50% at dosages beginning at 30gy(depending who's research you read). As if my wife's complications with Radiation Necrosis, brought on by Whole Brain Radiation and Taxol/Carboplatin chemotherapy weren't enough, she was subjected to improper medical protocol for brain and spinal MRI's for metastatic disease(unenhanced instead of enchanced-contrast), which left an undiagnosed tumor on her spine. After nine months, while admitted to the hospital for testing and evaluation for unexplained falls and light-headiness, the oncologists failed to perform a Spinal Tap and/or enhanced MRI and failed to diagnose three spinal metastases. They let her go home to fall and break her hip in four places. With the damage already done to her, oncologists at another hospital(in order to save her life or at least give her some time) had to administer intrathecal(to the brain) Methotrexate along with systemic radiation(15 fractions at 2.0gy) to the spine. This is when I came across for the first time, the idea of Radiation Necrosis. The oncologists showed me her enhanced brain MRI's from the previous year and the one performed then. It showed the progressive deteriation of her white matter(white matter disease). Late delayed effects, occuring several months to many years later are classified into diffuse white-matter injury, radiation-induced arteriopathy & stroke and late delayed radiation necrosis. Late delayed Radiation Necrosis is often irreversible and progressive, leading to stroke, severe disability or death. The most recent enhanced brain MRI's, Pet Scan and EEG showed even more diffuse white-matter injury. The Pet Scan showed globally decreased radiotracer uptake withing the brain, bilaterally, consistent with involutional change and prior radiation therapy. The MRI's showed the ventricles overall were prominent and there was widening of the sulci consistent with atropy. There was diffuse, abnormal signal intensity within the periventricular white matter, consistent with post radiation changes. The EEG showed generalized diffuse slowing that was significant with global encephalopathy. It is most commonly seen in toxic metabolic and degenerative conditions. There appeared to be a real amount of focal right sided slowing which would indicate cortical dysfunction on that side. My wife died at the age of 68 from Cardiopulmonary Failure(almost two years from the day she finished Whole Brain Radiation Therapy). Minutes before she expired, her temperature was normal, her blood pressure was normal but her pulse was 150(tachycardia). Her heart was racing to keep up with the lack of brain function and finally quit. The white matter disease that Ann experienced and caused her death was a result of Whole Brain Radiation and Chemotherapy(Taxol & Carboplatin). Believe me, a slow, arduous, neurological death is not preferable to a cancerous one. Even the infamous study performed by Dr. Roy Patchell, et al, in the early '90's was recognized incorrectly in the radiation oncology profession. The study was thought to have been the difference between surgical resection of brain tumor alone, vs. surgical resection & whole brain radiation. It was not. It was a study of whole brain radiation of a brain tumor alone, vs. whole brain radiation & surgical resection. The increased success had been the surgery. And they measured "tumor recurrance", not "long term survival". Patients experiencing any survival were dying from Radiation Necrosis(starting within two years of whole brain radiation treatment) and documented as "complications of cancer" not "complications of treatment". There was less "tumor recurrance" but not more "long term survival". In my wife's case, tumors recurred. -------------------------------------------------------------------------------- The authoer is also a member here at LSCS. Thanks for this article GDPAWEL If there is anything I can do PM Me am great researcher. Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted September 4, 2006 Share Posted September 4, 2006 Char Some great information and advice here already. I would only add that talking to the dr about it is always a good and safe bet, as well. My thoughts and prayers are with you. Please keep us posted, Chris Quote Link to comment Share on other sites More sharing options...
Char81062 Posted September 5, 2006 Author Share Posted September 5, 2006 Thanks to everyone who took time out of their busy lives to answer me. A lot of this makes sense now and at least gives me some peace of mind that other people have experienced like symptoms. Mom has had an MRI this past Friday and has an appointment with a Radiation Oncologist tomorrow so we should have a good idea of what we are dealing with at that point. What this forum really helps with are the questions that I will have my Sis and Pop ask the Dr about what is going on. Many thanks for your continued good thoughts and prayers. -Char Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted September 5, 2006 Share Posted September 5, 2006 Char One thing, and it might have already been suggested, is to get a small organizer type notebook to keep track of the questions and answers, the tests and results, etc that will come up. This makes it easier to keep track and have everything in one location. Keep us posted on the tests... My best to you, Chris Quote Link to comment Share on other sites More sharing options...
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