Aug 25, 2019 07:06AM xxyzed wrote:
What does your neurologist suggest? I know people with PCCI that are treated with ADHD stimulant medications.
Meet and support others who are affected by these issues around breast cancer fears, diagnosis and treatment.
Posted on: Aug 25, 2019 02:39AM - edited Nov 8, 2019 02:06AM by sweetp6217
Work is getting to be stressful. The boss and I had a sit down talk about my job skills. Not as good as I used to be, slowing down the workflow, and a few other things. I need to improve in the next months or I won't be able to retain my current position. This came as a surprise to me since the notes seemed to have dated back for about a year, perhaps. I went on the internet and discovered PCCI (Post cancer cognitive impairment). If it turns out that PCCI is my issue, I wonder if that could be the reason or if it's really something else.
I've sent messages to my doctors, (neurologist, PCP and oncologist) but am waiting to hear back.
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Posts 1 - 27 (27 total)
Aug 25, 2019 07:06AM xxyzed wrote:
What does your neurologist suggest? I know people with PCCI that are treated with ADHD stimulant medications.
Aug 25, 2019 09:04AM - edited Aug 25, 2019 09:36PM by sweetp6217
Sep 24, 2019 01:38AM macb04 wrote:
How could you have chemo without brain damage? Every type does damage . I have lost my easy verbal fluency that I had before the poison. I have recovered to about 95 % of normal. I will never take any toxic chemo again. It was awful, and I would never be able to work again if that happened, because my brain damage would be too severe. .
Sep 24, 2019 01:47AM WC3 wrote:
I couldn't think during chemotherapy and for a few months after but I think a lot of that was due to the anemia.
Sep 25, 2019 01:25AM macb04 wrote:
WC3, so are you back most of the way or some of the way back to normal as regsrds you mental function? I still loose words, especially if I am tired.
I liken it to speaking fluidly, then suddenly my words are ripped from me and handed back to me, all jumbled up in a box. I have to suddenly start frantically searching through the words, one at time by pulling them out of the box, scrutinizing them. Finally I find the word I lost. I absolutely hate this.
The doctors should be rendered mute as they did to me, see how they like it with their incompetent, archaic "treatment " of poison. Makes me furious.
Sep 25, 2019 06:58AM Lexica wrote:
macb - I feel like this too - especially with the hormone therapy. I think that makes it worse. I had an MRI because I started getting migraines - it was all clear except I did have some increased signaling somewhere, and when I asked about it, it basically is indicative of brain 'aging' or something. I didn't follow up on it, but it may be an option. I am wondering how long it will be until my boss stops being nice about my suffering performance at work, too.
Sep 25, 2019 02:56PM hapa wrote:
It could be PCCI, but it could also be from the AI that you're on, or just anxiety or depression. All of those can cause lack of focus and concentration. I'm dealing with the same and I'm not sure what the root cause is. I really hope its not the AIs because I'm on these for five years.
Sep 27, 2019 03:49PM WC3 wrote:
I definately feel a lot better but it's difficult to say of I'm back to my pre chemo level of cognitive functioning as I've not really challenged myself lately.
Sep 27, 2019 10:31PM - edited Nov 8, 2019 02:12AM by sweetp6217
Thank you all for your support and for more posts here in future...it really helps!
My neurologist wants cognitive testing done, and the others are in agreement. I went to a preliminary appointment and the tests are coming up. At that first visit, I was told that the testing would be billed under "dementia". I guess dementia is better known but I'm not happy about that label. But, if that's what it takes to get covered for the testing, so be it. I have to wonder if the testing will be enough.
Oct 1, 2019 10:46PM - edited Oct 1, 2019 10:51PM by macb04
That is just appalling that PCCI is " hard to prove".
It should be assumed to BE PCCI from all that POISON unless proven otherwise. How could anyone in their right mind NOT understand poison coursing through our veins will OF COURSE cause PERMANENT BRAIN DAMAGE?
It is a given. Logically it makes perfect sense that chemo causes damage. The level of damage is variable because of several different factors, but we all are permanently damaged by chemo's poison to one degree or another.
It's like they are trying to pretend that chemo poison does not permanently impair our cognitive function. Then there is no need to compensate or make accommodations for us. The bc industry doesn't care all that much that many of us loose our jobs due to this loss of mental capacity and live a much more financially perilous existence.
If the bc industry cared about our quality of life, about the number of people, post cancer who are bankrupt, and without savings ( like me) they would lobby for research and permanent accomodations in jobs to be made Standard of Care once any cancer diagnosis has occured. Instead they remain silent.
As Billie Ellish would say " DUH"
Oct 16, 2019 11:53AM - edited Nov 8, 2019 02:13AM by sweetp6217
Oct 16, 2019 12:17PM Lexica wrote:
that's an interesting study, do you happen to have the link?
Oct 16, 2019 12:25PM sweetp6217 wrote:
Oct 16, 2019 11:31PM trinigirl50 wrote:
I didnt have any cognitive issues after Chemo. I did get permanent peripheral neuropathy and permanent eyebrows/eyelashes loss. But I definitely have occasional brain fog and forgetfulness from the AI (along with thinning hair, vaginal atrophy, dry and wrinkly skin, joint stiffness, exacerbated arthritis, occasional depression). The sad thing is that I will probably have to stay on this drug indefinitely.
Frankly I think the anti hormonal therapy has been more damaging for me than the chemo.
Oct 19, 2019 12:21AM macb04 wrote:
Sweetp, I am sorry to hear about the cowardly runaround you are getting at your job. Makes my blood boil hearing how cold hearted employers can be to women in our situation. Most of us are not working because we are bored. We work because this is our way to make a living. To afford to take care of ourselves and our families.
I get research studies sent to me from this particular academic site. Several of them that I have gotten lately talk about tamoxifen causing memory impairment while it is being taken, along with risks for depression due to tamoxifen causing Rapid Tryptophan Depletion.
I doubt any of your doctors will respond to the study. They know they wreck our lives in tremendous ways. They figure we should just shut up and be grateful we are not dead.
Funny how it doesn't seem to work that way for most of us.
Oct 23, 2019 12:37AM sweetp6217 wrote:
Today was the worst and the hormone treatment wasn't helping. Anyone know how to keep the tears bottled up? I can't even talk with my boss without her setting me off. It's weird how people say things that strike a nerve, but they have absolutely no idea that it's doing just that.
Oct 23, 2019 01:31AM macb04 wrote:
Well sometimes I made myself an "appointment " to cry and lament later". I acknowledge that I have suffered a wound ( intentional on their part or not), and know that I need to address how their comment impacts me and makes me feel sad or angry or both.
I know that sounds weird, but I say it to myself and it helps me stave off tears till I am somewhere private and safe. I have PTSD feelings occur for a variety of triggers. I know I can not dismiss them, but need to address them head-on, just not always when I want to at work. No one knows my bc industry hx at work except two trustworthy colleagues. I am careful to always maintain a professional demeanor when at work . Luckily I rarely see a boss.
Sorry SweetP. It sucks what you are going through. No question. Your situation, and that of scores of others in similar circumstances is why I will never disclose my story at work
Oct 28, 2019 10:56PM rubyredslippers wrote:
Macb04 - I think we've met before .. ? We are kindred spirits. Yes it's poison - gloves, masks and aprons so it doesnt touch their skin as they administer it - yet it's injected into veins?
It's not difficult to prove the damage it does - there have been MRI scans done which show how an area of the brain shrinks, and the problem of chemotherapy induced cognitive impairment, as I call it, is very common in women who have had bc chemotherapy drugs. Apparently it is worse in young women.
I agree with the never again. I have refused their AI drugs for the same reasons. I don't believe that a 2% potential benefit is acceptable in terms of the side effects and very real associated health issues. How can I go to work with a fractured pelvis, or intense muscle or bone aches. I think our lives are hard enough with the CICI let along more problems due to their ineffective archaic poisons. When they know what they're doing and have something that isnt poisonous and also actually works I'd be interested. Until then, like you, I am pretty angry about it all - not just how I've been treated when I've refused the drugs, but also that I was NEVER told about the potential brain damage. Along with everything else they cover up and lie about.
Oct 31, 2019 02:27PM macb04 wrote:
We are definitely in agreement Rubyredslippers. I just don't get why it is such a struggle to have PCCI acknowledged and given accommodations. Permanent accommodations should be made for those of use who have been poisoned.
Our chemo caused cognitive damages are PERMANENT. Let them stop pretending otherwise. We live with the true reality, and we were told a line of BS. I know for sure I wasn't told it could be forever......................................
Oct 31, 2019 11:54PM - edited Oct 31, 2019 11:59PM by rubyredslippers
Agree. Problem in Australia is that medical oncologists are on the board of major charity groups. I contacted one who has a section about "chemo brain". I said that they are part of the problem by referring to it as that, and to call it what it was - CICI. I explained that it does not just happen during chemo "therapy" and there is substantial evidence that the brain is changed - changes are permanent etc. I said that it makes things harder for us, as people believe that the problems experienced are mild and transient, disappearing shortly after that "treatment" ends. I talked about how I have to work, and my struggle to get my employer to understand what has happened to me, and that it is a real problem. Maybe if the truth were told our lives would be that little easier.
The usual story - i was told that they wouldnt be changing any time soon, and the spiel which suits medical oncologists. Whilst these charities let medical oncologist's sit on their advisory boards nothing will change anytime soon. Do they want people to know the truth? Of course not. The reality of what these drugs do should be disclosed to every patient so that they can make an informed decision - every patient should be fully informed of what has happened to them, and offered some kind of therapy and help to manage and go forward. It is the ultimate betrayl of trust to find out years later what the risks were and know you were not informed. That's how I feel - and it adds to the anger that cancer already brings. I only found out recently that there was a risk that my hair would never grow back - how dare they not tell me that. I realise now that the 3 or so percent potential "benefit" of taking these drugs was not at all worth it. It should be illegal for a cytotoxic drug - that requires a nurse to be 'gowned up' to administer it, to be injected into a persons bloodstream for a 3% benefit. Not acceptable. I don't know how they sleep at night.
Nov 6, 2019 02:24AM macb04 wrote:
Rubyredslippers, I agree, that for such a low benefit they should be required to give full disclosure. Even if the benefit was substantial they should be required to give full and complete info, not the lying nonsense they push off onto us terrified women to insure doglike obedience.
I agree, I don't know how they sleep at night, much less live with themselves for their dishonesty. I am surprised the guilt doesn't eat away at them, but then maybe it does, which is why doctors have the second highest suicide rate of any profession in the US.
Nov 6, 2019 12:14PM - edited Nov 8, 2019 02:31AM by sweetp6217
Update, I got the cognitive and emotional testing, etc. I'm now waiting for actual treatment. I called HR but they weren't able to help me yet. I hate waiting.
Also, it's very difficult to find anyone to cover my shift(s) or at least, part of them. Before I went on a short vacation, they were telling me that they couldn't find coverage for some of it. Way to lay a guilt trip on me.
Appointments have been scheduled. Hopefully that helps out.
Nov 7, 2019 12:42AM macb04 wrote:
I'm sad to hear of your troubles getting assistance/someone to cover for you. It's not that much to ask. Not really. We all have needed a helping hand sometimes in life. I try to pay it forwards much of the time. Putting some good Karma for myself in the bank.
Do many people at your job know of your bc history? Could you Network on Facebook or some other Social Media to get some help?
Nov 7, 2019 11:38AM - edited Nov 8, 2019 02:22AM by sweetp6217
Nov 8, 2019 02:30AM sweetp6217 wrote:
macb04; thank you for the kind words. Yes, they know but most of them are already working the same time I would have. Networking was and is still too hard to accomplish. I could have tried to ask for certain times and/or days off, but that would have stacked the deck against me. I'm trying to limit blow-back. This warm and welcoming place gives me just enough to keep me going.
Nov 10, 2019 03:59PM macb04 wrote:
sweetp, I home you are taking CoQ10, for help with energy and brain function. It also has anticancer benefits.
I am also on Lion's Mane Mushroom Extract for my brain health. Lion's Mane Mushroom Extract , as well as Turkey Tail Mushrooms and Reishi have strong anticancer benefits. I take Mushroom Extracts like Turkey Tail and AHCC every day.
Mushroom UpdateMonday, October 27, 2014
by: Sara Thyr, ND
The scientific evidence for this mushroom is powerful. If you have cancer, really of any type, you want to take Coriolus versicolor (Turkey Tail Mushroom). (It is also called Trametes versicolor, but in most of the research and manufacturing it is referred to as Coriolus versicolor.) There is too much research on this medicinal mushroom to cover it thoroughly in this update, so I will focus on some of the most recent, as well as the most compelling. The benefits are well proven: improves quality of life by reducing pain, decreasing cachexia, decreasing nausea and vomiting, along with improving effectiveness of chemo and radiation.1 One of the mechanisms for this is its effectiveness at increasing tumor necrosis factor-α (TNF-α). And it does this without inducing fever, but instead with a drop in body temperature.1
Another study from this year reports decreased metastasis of breast cancer with an extract of Coriolus. It was shown to stimulate the immune system and slow tumor growth. It decreased tumor weight by 36% and decreased lung metastasis by 70%. It also showed a protective effect on bone, which can be damaged and lost due to breast cancers. 2
Esophageal cancer cells are also reduced by a Coriolus versicolor extract. Scientists proved in a 2012 study that a human esophageal cancer cell line (Eca109) was kept from proliferating by the extract of Coriolus versicolor.3
One of the most amazing research articles on Coriolus versicolor is actually not a single study but a meta-analysis of many research studies over many years. What this study did was sift through years and years of research and only pulled out the ones that were worthy of being included. Factors for this inclusion included that it be a human study, double-blinded and placebo-controlled—basically all of the things that we consider to constitute good research. The conclusion of their analysis was that Coriolus versicolor is very effective and safe at treating cancers (including colon, breast, and lung) and not only does it not interfere with conventional treatments like chemo and radiation, it actually helps those therapies work better.4
Another of my favorite medicinal mushrooms is Hericium (Lion's Mane). Therapeutic uses include Parkinson's disease, multiple sclerosis, post-stroke and dementia as well as anxiety and depression.6
One recent research study reviews many articles on how different medicinal mushrooms work for brain health pointed out that "The mushrooms (either extracts from basidiocarps/mycelia or isolated compounds) reduced beta amyloid-induced neurotoxicity and had anti-acetylcholinesterase, neurite outgrowth stimulation, nerve growth factor (NGF) synthesis, neuroprotective, antioxidant, and anti-(neuro)inflammatory effects."5
One reason that it has shown benefit in Parkinson's and Multiple sclerosis is that it has a protective effect on the myelin sheath – the outer coating of the axon of the nerve cell. The myelin sheath protects, coats and feeds the nerve cell, and damage to this creates some of the symptoms of neuro-degenerative diseases. A piece of research from 2003 showed that the extract of Hericium helped improve the health of these cells, and no toxic or damaging effect was found.6 This study was in vitro, and certainly more human studies are warranted.
PIWEP FROM PHELLINUS IGNIARIUS
This year some very exciting research showed that a medicinal mushroom extract called Piwep, which comes from Phellinus igniarius, can slow the damage to nerve cells caused by multiple sclerosis, in a mechanism believed to be related to its effect on the immune system. In an animal model, the mushroom extract showed suppression of demyelination in the disease that had been induced. It also inhibited migration of lymphocytes and interferon-γ to the site, decreasing inflammatory response. The extract was made using the fruiting bodies of the mushroom, using a process of hot water and ethanol extraction. Thus the name Piwep (Phellinus igniarius water-ethanol precipitate).7 More human research is certainly needed for this disease for which there is no known cause or effective current treatment.
CHAGA MUSHROOM (INONOTUS OBLIQUUS)
Several new studies this year show that Chaga mushroom has benefit in Herpes Simplex (HSV). No viral cells were detected in the group treated with the Chaga mushroom extract.12 In another study, the extract of Chaga proved to inhibit viral membrane fusion, providing a new treatment option to usual nucleoside analog anti-herpetics.13
Anti-cancer benefits of the fruiting bodies of Inonotus were also shown in a research article from this year. This mushroom, commonly used in Russia, Poland and other Baltic areas, has extensive traditional use for various ailments such as stomach issues, cleansing and disinfecting, and cancer. The research shows the extract effective in decreasing tumor cell proliferation. The authors also note the very low toxicity to normal cells when the mushroom extract was applied.14
AMAZING, HEALTH PROMOTING REISHI MUSHROOM – GANODERMA LUCIDUM
If nothing is wrong with you, is there a mushroom that you should take every day? Absolutely! Reishi is one mushroom with a tremendous amount of research behind it, for a plethora of issues. Reishi, like most mushrooms, is an excellent immune system booster. It is also very good at fighting a variety of cancers. Reishi is known as the mushroom of longevity, taken for centuries by Chinese royalty because of its powers of extending life.
Beyond treating cancer, this mushroom is effective for hypertension, hypercholesterolemia, and hepatitis – all while being amazingly safe. It has also been found to work well at treating skin wounds.8
One of the major reasons that breast cancer remains so dangerous and has such a high mortality rate is its ability to metastasize quickly to nearby tissues, including lymph nodes and lungs. Recent research shows that Ganoderma lucidum helps to prevent metastasis to the lungs. In this study, the tumor size was decreased slightly, but the metastasis to the lungs was strongly inhibited. The mechanism for this inhibition is thought to be inhibition of pro-invasive genes.9
Other reported benefits from Ganoderma lucidum include: inhibiting histamine release, inducing apoptosis, inhibiting viral infections, antioxidant, CNS sedation, anti-microbial and immune modulation.
BEST FORM FOR MEDICINAL EFFECTS
There is a good deal of controversy about what form is best for medicinal mushrooms. The greatest body of evidence points towards using hot water extractions. All mushrooms have a cell wall made of chitin. Our bodies cannot break this down to extract the potent medicine inside. So eating mushrooms, while a good source of fiber and other nutrients, will not provide you much medicinal benefit. The vast majority of the research on Coriolus showing its powerful anti-cancer benefit has been done on a hot water extract of the mushroom. There are companies who make a hot water extract that is then dehydrated and encapsulated, making it very simple to get very high doses of the mushroom desired. The only downside of this, particularly in mushrooms that need to be taken several times per day at high doses for maximum benefit, is the cost. There are scientists and purveyors of mycelium extracts who argue that mycelium is much more sustainable and just as efficacious. There are some good studies going on currently, but as of yet there is limited research the medical literature to confirm this. One recent study on Hericium did utilize mycelium extract and showed benefit.10 Another study on Chaga showed greater antioxidant activity with the fruiting bodies compared to the mycelium.11
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