Woohooo, Validation on 'Chemo Brain'!!?!!

blueroses
blueroses Member Posts: 524
edited March 2014 in Emotional Support #1
It's a new day in cancer care. Today I got in to see a Memory Clinic here in the city and while I was there I talked to the nurse about my issues with 'chemo brain' thinking oh man I will have to tell her what that is and go into it all over again. However, much to surprise she acknowledged the syndrome as if it was almost a given and then went on to tell me that they had a guy come into the clinic for diagnosis with 'chemo fog' and the neurologist who saw him then told this nurse that they do see it in long term survivors and some with even shorter times out of treatment. I nearly fell off my chair. I remember the days, all too well, when I would mention this fuzzy thinking and an oncologist asked me if I had thought of seeing a psychiatrist about it. Grrrrrrrrrrrrrrrrrr. But the good news is that they are starting to understand as greater numbers of us come forward, presenting them with similar symptoms they can't ignore any longer. Even the damage to my heart from the adriamycin has just been started to be talked about, at least hear, not too long ago, in the medical field - validating the patient. It's a new day in cancer care indeed.

My results won't be in on what the diagnosis is, I seem to do pretty well in inital memory and cognitive testing except for a few areas where I just hit a wall with my fuzzy thinking. Man it's weird when that happens, right out of the blue, things that were so easy to handle cognitively years ago - um, not so much now - but now there seems to be validation that at the very least I may have an answer soon as to why. Hope they don't hang it all on stress but we will see. Blessings, Blueroses.

Comments

  • terato
    terato Member Posts: 375
    #2
    Here is more validation for you, Blue!
    Cisplatin, one of my life-saving "poisons", is used to treat both teratoma and ovarian carcinoma. This link with take you to a published study regarding its neurological side-effects (aka chemo-brain).

    http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=1028656&blobtype=pdf

    And I used to wonder why I can't carry a cup of coffee without spilling it!

    Thanks for raising the issue!

    Love and Courage!

    Rick
  • slickwilly
    slickwilly Member Posts: 334 Member
    #3
    terato said:

    Here is more validation for you, Blue!
    Cisplatin, one of my life-saving "poisons", is used to treat both teratoma and ovarian carcinoma. This link with take you to a published study regarding its neurological side-effects (aka chemo-brain).

    http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=1028656&blobtype=pdf

    And I used to wonder why I can't carry a cup of coffee without spilling it!

    Thanks for raising the issue!

    Love and Courage!

    Rick

    walking with coffee
    Rick. Your last comment cracked me up. I have been known to throw coffee all over the living room or kitchen. The wife finally gets upset and yells at me to sit my butt down. I live a funny life to my family as I run into door casings as I can't seem to judge the opening. And falling down really hurts as I get older. I didn't have any of these problems before cancer. Catch you later Slickwilly
  • blueroses
    blueroses Member Posts: 524
    #4
    terato said:

    Here is more validation for you, Blue!
    Cisplatin, one of my life-saving "poisons", is used to treat both teratoma and ovarian carcinoma. This link with take you to a published study regarding its neurological side-effects (aka chemo-brain).

    http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=1028656&blobtype=pdf

    And I used to wonder why I can't carry a cup of coffee without spilling it!

    Thanks for raising the issue!

    Love and Courage!

    Rick

    Thanks Rick
    I will look at that site thanks. Yup, it is indeed a whole new day in cancer treatment and research. I just found out that in the hospital I go to for the Memory Clinic they have a research lab that is responsible for new findings in altzheimers treatments and I believe in other cognitive disorders as well. I feel comfortable in this new setting, and the validation by the docs and nurses on chemo brain sure has done it. I am not up on why they used to feel that this 'blood-brain barrier' they talk about wouldn't allow the transfer of chemo to the brain but clearly something has changed.

    Slick mentioned that his family looks upon things he does sometimes like losing balance as a personal issue and not a real bonified side effect and I think we can all identify with that judgement from friends and family about alot of our side effects. I know that when I look back on my treatment and recovery days I do believe I had a definite problem with side effects of drugs affecting my temperament and I was judged soley on those issues as personality rather than side effects where they clearly lie. I think we have totally entered a whole new day in cancer treatment and more importantly in the understanding of the survivors and how it has all affected them. Halleluyah. Blueroses.
  • green50
    green50 Member Posts: 312
    #5
    blueroses said:

    Thanks Rick
    I will look at that site thanks. Yup, it is indeed a whole new day in cancer treatment and research. I just found out that in the hospital I go to for the Memory Clinic they have a research lab that is responsible for new findings in altzheimers treatments and I believe in other cognitive disorders as well. I feel comfortable in this new setting, and the validation by the docs and nurses on chemo brain sure has done it. I am not up on why they used to feel that this 'blood-brain barrier' they talk about wouldn't allow the transfer of chemo to the brain but clearly something has changed.

    Slick mentioned that his family looks upon things he does sometimes like losing balance as a personal issue and not a real bonified side effect and I think we can all identify with that judgement from friends and family about alot of our side effects. I know that when I look back on my treatment and recovery days I do believe I had a definite problem with side effects of drugs affecting my temperament and I was judged soley on those issues as personality rather than side effects where they clearly lie. I think we have totally entered a whole new day in cancer treatment and more importantly in the understanding of the survivors and how it has all affected them. Halleluyah. Blueroses.

    Chemo Brain
    Hmm, Chemo, Age, Stress do we have a chance? LOL I talked with one of the nurses and she said sometimes they the nurses think they have chemo brain being around the drugs so much. Its a very real thing. Bluerose glad you went to that clinic. Any med can have an effect on people. And being one of the strongest medicines as chemo and its long use why wouldnt it have side efffects. I am guessing what you used 20 years ago Bluerose was real strong and damaging. Thru the years they have tried to come up with chemos with less side effects. I know they are still bad but 20 years ago they were worse. Well we know what it does no matter what others who havent experienced it think.
    Prayers and Hugs
    Sandy
  • terato
    terato Member Posts: 375
    #6
    blueroses said:

    Thanks Rick
    I will look at that site thanks. Yup, it is indeed a whole new day in cancer treatment and research. I just found out that in the hospital I go to for the Memory Clinic they have a research lab that is responsible for new findings in altzheimers treatments and I believe in other cognitive disorders as well. I feel comfortable in this new setting, and the validation by the docs and nurses on chemo brain sure has done it. I am not up on why they used to feel that this 'blood-brain barrier' they talk about wouldn't allow the transfer of chemo to the brain but clearly something has changed.

    Slick mentioned that his family looks upon things he does sometimes like losing balance as a personal issue and not a real bonified side effect and I think we can all identify with that judgement from friends and family about alot of our side effects. I know that when I look back on my treatment and recovery days I do believe I had a definite problem with side effects of drugs affecting my temperament and I was judged soley on those issues as personality rather than side effects where they clearly lie. I think we have totally entered a whole new day in cancer treatment and more importantly in the understanding of the survivors and how it has all affected them. Halleluyah. Blueroses.

    "Neurotoxicity of Cancer Chemotherapy" Scary stuff!
    "Neurotoxicity of Cancer Chemotherapy
    Chemotherapy can be toxic to any portion of the central (see sidebar) or peripheral nervous system, and each agent has its own profile of potential toxicities (Table 2). The severity of chemotherapy-induced neurologic dysfunction spans the spectrum from very minor symptoms to severe, permanent sequelae and even death, with polyneuropathy and diffuse encephalopathy the most common syndromes. For many of the most frequently used agents, including methotrexate, cisplatin and vincristine, neurologic side effects are dose-limiting.

    “The incidence and severity of neurotoxicity is determined by multiple factors, including patient age; chemotherapy dose, dose intensity and cumulative dose; route of administration (systemic, intra-arterial, intrathecal); renal or hepatic dysfunction affecting drug clearance or toxic metabolite formation; inherited differences in drug metabolism or neural repair mechanisms; and the synergistic effects of other chemotherapy drugs and/or radiotherapy,” Dr. Dropcho describes. “Several drugs are associated with two or more distinct neurologic syndromes that may occur concomitantly in the same patient.”

    The use of bone marrow transplantation and growth factors (ie, granulocyte- or granulocyte macrophage colony-stimulating factors) has made high-dose chemotherapeutic regimens feasible and commonplace, which in turn has increased the risk of neurotoxicity. Risk is also heightened in patients who already have neuropathic symptoms due to diabetes mellitus or hereditary neuropathies. In addition, individuals who have previously undergone treatment with neurotoxic chemotherapeutic agents are thought to be more vulnerable to subsequent chemotherapy-induced peripheral neuropathy..."

    http://sps.iumg.iupui.edu/C14/Neurological Implications of C/default.aspx#C4

    Blue,

    If I have nightmares tonight, it's all your fault (or, is it really the chemo?)!

    Yikes!

    ;-}Rick
  • slickwilly
    slickwilly Member Posts: 334 Member
    #7
    terato said:

    "Neurotoxicity of Cancer Chemotherapy" Scary stuff!
    "Neurotoxicity of Cancer Chemotherapy
    Chemotherapy can be toxic to any portion of the central (see sidebar) or peripheral nervous system, and each agent has its own profile of potential toxicities (Table 2). The severity of chemotherapy-induced neurologic dysfunction spans the spectrum from very minor symptoms to severe, permanent sequelae and even death, with polyneuropathy and diffuse encephalopathy the most common syndromes. For many of the most frequently used agents, including methotrexate, cisplatin and vincristine, neurologic side effects are dose-limiting.

    “The incidence and severity of neurotoxicity is determined by multiple factors, including patient age; chemotherapy dose, dose intensity and cumulative dose; route of administration (systemic, intra-arterial, intrathecal); renal or hepatic dysfunction affecting drug clearance or toxic metabolite formation; inherited differences in drug metabolism or neural repair mechanisms; and the synergistic effects of other chemotherapy drugs and/or radiotherapy,” Dr. Dropcho describes. “Several drugs are associated with two or more distinct neurologic syndromes that may occur concomitantly in the same patient.”

    The use of bone marrow transplantation and growth factors (ie, granulocyte- or granulocyte macrophage colony-stimulating factors) has made high-dose chemotherapeutic regimens feasible and commonplace, which in turn has increased the risk of neurotoxicity. Risk is also heightened in patients who already have neuropathic symptoms due to diabetes mellitus or hereditary neuropathies. In addition, individuals who have previously undergone treatment with neurotoxic chemotherapeutic agents are thought to be more vulnerable to subsequent chemotherapy-induced peripheral neuropathy..."

    http://sps.iumg.iupui.edu/C14/Neurological Implications of C/default.aspx#C4

    Blue,

    If I have nightmares tonight, it's all your fault (or, is it really the chemo?)!

    Yikes!

    ;-}Rick

    brain damaged
    Rick. When I finished reading that last post I realized I had a new problem with my chemo brain. Understanding big words! All the big words just stared running together. Blue this is all your fault for starting this discussion. I am going to spend the rest of the night looking at 4 letter words so I feel better. Slickwilly
  • blueroses
    blueroses Member Posts: 524
    #8
    terato said:

    "Neurotoxicity of Cancer Chemotherapy" Scary stuff!
    "Neurotoxicity of Cancer Chemotherapy
    Chemotherapy can be toxic to any portion of the central (see sidebar) or peripheral nervous system, and each agent has its own profile of potential toxicities (Table 2). The severity of chemotherapy-induced neurologic dysfunction spans the spectrum from very minor symptoms to severe, permanent sequelae and even death, with polyneuropathy and diffuse encephalopathy the most common syndromes. For many of the most frequently used agents, including methotrexate, cisplatin and vincristine, neurologic side effects are dose-limiting.

    “The incidence and severity of neurotoxicity is determined by multiple factors, including patient age; chemotherapy dose, dose intensity and cumulative dose; route of administration (systemic, intra-arterial, intrathecal); renal or hepatic dysfunction affecting drug clearance or toxic metabolite formation; inherited differences in drug metabolism or neural repair mechanisms; and the synergistic effects of other chemotherapy drugs and/or radiotherapy,” Dr. Dropcho describes. “Several drugs are associated with two or more distinct neurologic syndromes that may occur concomitantly in the same patient.”

    The use of bone marrow transplantation and growth factors (ie, granulocyte- or granulocyte macrophage colony-stimulating factors) has made high-dose chemotherapeutic regimens feasible and commonplace, which in turn has increased the risk of neurotoxicity. Risk is also heightened in patients who already have neuropathic symptoms due to diabetes mellitus or hereditary neuropathies. In addition, individuals who have previously undergone treatment with neurotoxic chemotherapeutic agents are thought to be more vulnerable to subsequent chemotherapy-induced peripheral neuropathy..."

    http://sps.iumg.iupui.edu/C14/Neurological Implications of C/default.aspx#C4

    Blue,

    If I have nightmares tonight, it's all your fault (or, is it really the chemo?)!

    Yikes!

    ;-}Rick

    Rick, tell me last night you dreamt of calm seas and palm trees?
    That's funny about the nightmares cause after I read your post here I thought I would have nightmares tonight for sure, lol. I go in fits and starts - sometimes I want to know the whole truth and other time not so much - just depends I guess on how much I am dealing with at any given time as to how much more I can take in. Thanks for your posts Rick, always informative. Blessings, Blueroses.
  • blueroses
    blueroses Member Posts: 524
    #9
    slickwilly said:

    brain damaged
    Rick. When I finished reading that last post I realized I had a new problem with my chemo brain. Understanding big words! All the big words just stared running together. Blue this is all your fault for starting this discussion. I am going to spend the rest of the night looking at 4 letter words so I feel better. Slickwilly

    What is this "Gang up on Blue Day", lol
    For Xmas I am getting you a dictionary Slickster, lol. Interesting you mention that running together thingy though. One of the cognitive issues I have started to notice is that sometimes when I am watching tv I realize that I am not picking up on the dialogue at all. At first I thought the volume needed to be turned up on the tv but after doing that it made no difference. The words just jumbled together - it was pretty weird. This doesn't happen all of the time just out of the blue I realize I have no idea what is being said. It isn't that I lose interest, the dialogue just jumbles and it takes a few minutes before that clears up. Anyone else experience that kind of thing? Hugs to all, Blueroses.
  • slickwilly
    slickwilly Member Posts: 334 Member
    #10
    blueroses said:

    Rick, tell me last night you dreamt of calm seas and palm trees?
    That's funny about the nightmares cause after I read your post here I thought I would have nightmares tonight for sure, lol. I go in fits and starts - sometimes I want to know the whole truth and other time not so much - just depends I guess on how much I am dealing with at any given time as to how much more I can take in. Thanks for your posts Rick, always informative. Blessings, Blueroses.

    Hearing aids
    Blue. We cannot blame everything on chemo problems. I suspect your getting very old and need a hearing aid ha ha. And who wants to watch reruns of Tommy Hunter up there in Canada anyway. So you send me a dictionary and I'll send you one of those metal cones that you can hold up to your ear. Then the next time you walk into a doctors office I gaurantee they will listen to what you have to say. I would not pick on you if I didn't care about you. Bless you Slickwilly
  • terato
    terato Member Posts: 375
    #11
    blueroses said:

    Rick, tell me last night you dreamt of calm seas and palm trees?
    That's funny about the nightmares cause after I read your post here I thought I would have nightmares tonight for sure, lol. I go in fits and starts - sometimes I want to know the whole truth and other time not so much - just depends I guess on how much I am dealing with at any given time as to how much more I can take in. Thanks for your posts Rick, always informative. Blessings, Blueroses.

    Couldn't sleep a wink last night!
    But, it was probably those four half cups of strong coffee I had in the evening (They were full when I poured them.) Which reminds me, I'm out of paper towels!

    Hasta!

    Rick
  • blueroses
    blueroses Member Posts: 524
    #12
    slickwilly said:

    Hearing aids
    Blue. We cannot blame everything on chemo problems. I suspect your getting very old and need a hearing aid ha ha. And who wants to watch reruns of Tommy Hunter up there in Canada anyway. So you send me a dictionary and I'll send you one of those metal cones that you can hold up to your ear. Then the next time you walk into a doctors office I gaurantee they will listen to what you have to say. I would not pick on you if I didn't care about you. Bless you Slickwilly

    Oh aren't you just the comedian Slickster, lol.
    Thanks for reminding me that not only did I go through major chemo and total body radiation but I'm getting old as well. WAAAAHHHHHHH. EWWWWWW, did you say Tommy Hunter? Wow there's a blast from the past. If I used a metal cone into a doctors office I'm sure they would take me out in a straight jacket which wouldn't be half bad considering they would save me another doctor's input, lol. Hey I'm serious I miss huge parts of info on tv, maybe the solution is not to watch tv any longer? lol. Oh I know you are kidding Slickster. Hugs, Blueroses.
  • blueroses
    blueroses Member Posts: 524
    #13
    terato said:

    Couldn't sleep a wink last night!
    But, it was probably those four half cups of strong coffee I had in the evening (They were full when I poured them.) Which reminds me, I'm out of paper towels!

    Hasta!

    Rick

    You're a hoot Rick
    AH HA, I am then not responsible for your sleep problems. Can you spell decaffeinated? Silly little Rick. lol Hasta to you too, whatever that means. Blessings, Blueroses.
  • blueroses
    blueroses Member Posts: 524
    #14
    green50 said:

    Chemo Brain
    Hmm, Chemo, Age, Stress do we have a chance? LOL I talked with one of the nurses and she said sometimes they the nurses think they have chemo brain being around the drugs so much. Its a very real thing. Bluerose glad you went to that clinic. Any med can have an effect on people. And being one of the strongest medicines as chemo and its long use why wouldnt it have side efffects. I am guessing what you used 20 years ago Bluerose was real strong and damaging. Thru the years they have tried to come up with chemos with less side effects. I know they are still bad but 20 years ago they were worse. Well we know what it does no matter what others who havent experienced it think.
    Prayers and Hugs
    Sandy

    Not to forget Fibro Fog
    I am being investigated for fibromyalgia too (why not, lol) and apparently they have seen what they call 'fibro fog' which is like a chemo brain phenomenon in some fibromyaligia patients, or should I say fibro patients are reporting it like we are chemo brain. So if I do have firbromyalgia then I would have fibro fog, possible chemo brain, am an old fert, and apres menapausal - look out. Good thing we have strick gun laws up here. lol. Just kidding of course. lol

    You know seriously though, it's so weird, we search and search for answers to our health issues - labels we need to somehow justify our symptoms and complaints perhaps, validate us, but then when we get the validation it's like 'oh dang, I do have chemo brain (or whatever it is), NOW WHAT? Strange phenomenon. Anywho, I will hope for the best as always. The best to all of you as well. Blueroses.
  • slickwilly
    slickwilly Member Posts: 334 Member
    #15
    blueroses said:

    You're a hoot Rick
    AH HA, I am then not responsible for your sleep problems. Can you spell decaffeinated? Silly little Rick. lol Hasta to you too, whatever that means. Blessings, Blueroses.

    your funny
    This has to be one of the most serious and funny problems on the discussion board. I guess we have to laugh at ourselves sometimes as most people don't understand where we are coming from. I am glad the medical community is catching up. Its a bit slow for many of us that have delt with the side effects for so many years. I know I was completly insulted in the past because some doctors said it was related to sitting around and not using our brains. Or stress related. Holy if it was stress related 17 years of working in a prison with murders should of done me in. And as much as it hurt, I was not really sitting around and not using my brain during my cancer treatments. I stayed active. The fact remains that I had many serious problems for many months after my treatments and still have some problems. Blueroses I pray they are able to help you and that some of your issues are fixed. Its so hard when we have 10 medical problems and nothing can be taken off the pile to relieve some pain. And Rick its great to see your sense of humor come out. I have always been amazed at the resources you bring to the discussion boards. I hope everyone has a great weekend. Blessings Slickwilly
  • blueroses
    blueroses Member Posts: 524
    #16
    slickwilly said:

    your funny
    This has to be one of the most serious and funny problems on the discussion board. I guess we have to laugh at ourselves sometimes as most people don't understand where we are coming from. I am glad the medical community is catching up. Its a bit slow for many of us that have delt with the side effects for so many years. I know I was completly insulted in the past because some doctors said it was related to sitting around and not using our brains. Or stress related. Holy if it was stress related 17 years of working in a prison with murders should of done me in. And as much as it hurt, I was not really sitting around and not using my brain during my cancer treatments. I stayed active. The fact remains that I had many serious problems for many months after my treatments and still have some problems. Blueroses I pray they are able to help you and that some of your issues are fixed. Its so hard when we have 10 medical problems and nothing can be taken off the pile to relieve some pain. And Rick its great to see your sense of humor come out. I have always been amazed at the resources you bring to the discussion boards. I hope everyone has a great weekend. Blessings Slickwilly

    Ha, ha, ha and boohoo hoo
    Yup it helps to laugh at serious issues sometimes, it has always helped me get through the tough times, that's for sure. You're right Slick, this topic is an interesting combination of laughing and crying isn't it, never thought of that but you are right.

    I agree that it has been slow in coming, the medical community finally coming to recognize this as a real issue, I too have been through all the suggestions of 'have you seen a shrink' when I described forgetful moments and cognitive changes. Yup and the stress card, yada yada. But better late than never.

    Ya my memory issues and cognitive problems definitely started after treatments, no doubt about it, I mean before that I was in line for a Nobel Peace Prize, okay that's a lie but I sure could recall today's date much quicker than now. lol. You get my drift.

    Anywho my cat has knocked something over in the other room so I had better go check. Dang cat. Hope I don't TRIP OVER HER, Slick. lol

    Have a good weekend all. Blueroses.

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