This is the story of a personal tragedy for my wife and all who love her, but one with which all too many families are also familiar. As many of you know, my wife was treated for Pancreatic Cancer in late 2006 and early 2007. I wrote about it here at Booman Tribune at the time. We thought ourselves lucky that her cancer, usually a death sentence, had been caught early before it metastasized, while surgery, chemotherapy and radiation could still save her life. What no one prepared her or I for, and what many newly diagnosed cancer patients are not told, is that many standard chemotherapy treatments can have serious long term effects on the brain and a patient’s cognitive function, long after the treatment is over.
This condition even has a name, one given it by the cancer patients who suffer from it: Chemo Brain:
. . . I have another strike against me: the prospect of getting “chemo brain” from heavy-duty chemotherapy, should it ever become necessary. This is one of the hidden dangers of … most cancer therapy[…]
Researchers tend to talk about “multiple non-overlapping toxicities” and doctors tend to use phrases like “well-tolerated” when describing some of these regimens. (I suppose whatever doesn’t kill you is something that, grading on a curve, you can tolerate well.) But in plain old common sense English, pump your body full of stuff that destroys cells and don’t be surprised if it does something in the brain.
I first heard the expression “chemo brain” from my sister, who was diagnosed and treated for breast cancer in 2007 while I was visiting her after her first course of chemotherapy. No one had told me about this possible “complication” before. I had to hear it first from a another cancer patient. Yet as she described her problems with memory loss, confusion, inability to concentrate or focus on even simple tasks, and other cognitive impairments, I immediately recognized someone I knew with the very same concerns: my wife.
All through her treatment she remained calm and focused on getting well. Despite her severe nausea and fatigue she experienced, and the terrible pain she endured after her surgery (which left a 12 inch scar across her belly) she radiated a cheerful and positive attitude about her illness toward her family, and especially her children. Only once did I see her break down in tears, and then only for a few minutes. She maintained control of her faculties and continued to consult with her co-workers when necessary on projects for which she had been responsible.
However, since her treatment for cancer ended in March 0f 2007, we have seen a clear and continuing decline in her ability to function. This was a brilliant woman, a graduated from an Ivy League school, then from law school. A woman who had previously worked at a major law firm, and was now a senior diversity management supervisor at a Fortune 500 company who had frequent contact with senior executives, including the CEO of her company, as well as national recognition from her peers in the diversity management field.
Now she battles severe short term memory loss, constant anxiety, rapid and unpredictable mood swings and other cognitive impairments that worsened over time and forced her to leave her job and apply for disability. Here’s how I recently described her behavior to our doctor in an email I sent him:
I should also tell you ____ seems to be deteriorating even more than usual. Perhaps it is the stress of completing her disability claim forms, but her mind is not doing well (memory loss, lack of focus and clarity, disjointed rambling speaking patterns, obsessive behaviors) … She is talking to herself a lot and [is] often quite irritable, having also a greater propensity for mood swings. She will often become quite manic and agitated. When she is happy or excited (and even the smallest bit of “good news” can trigger this response) her mood is excessively joyful, more than one would expect. When angry she may yell or behave very inappropriately. Verbally if you respond to her with more information than she can handle, she can express great anxiety. Our conversations, such as they are, consist primarily of monologues on her part with very few interjections (usually no more than one word or sentence) by me. If I try to tell her something about myself or about something I think relevant to our “discussion” I can be abruptly told to shut up, or to stop distracting her. I’ve learned over time to keep my mouth shut when she converses with me except to respond to specific questions. Nonetheless, because of her rambling, disjointed manner of speaking it can be quite agonizing at times for me.
Some people get a mild case of “chemo brain” and our are able to recover most of their normal brain function, but for many, such as my wife the condition is long term and extremely debilitating. Of course, even today, many doctors, drug companies and medical professionals claim that “chemo brain” is a myth. They often claim, despite little if any evidence to support their thesis, that chemo brain is merely a function of the psychological distress that any diagnosis of a life threatening illness such as cancer. They pooh pooh the idea that the toxic chemicals we use to treat cancer could have any long term effects on one’s health, particularly effects on a cancer patient’s mental health.
Research in Australia and the United States indicates chemotherapy’s effects on the brain might be exaggerated.
Researchers found that the stress of being diagnosed with breast cancer, rather than the chemotherapy used to treat it, may be the cause of patients’ problems with memory and concentration.
“Chemofog” – impairments in memory and in thinking that have been attributed to chemotherapy – was not detected in two studies of women being treated for breast cancer, according to a presentation at the American Academy of Neurology.
How did these researchers test for the effects of chemo brain? By using a written test! No physiological testing, no MRI scans, no sophisticated neurological studies of brain chemistry. No, they based their opinion on how 30 cancer patients responded to a “cognitive assessment tool” that was developed by a company I’ve never heard of before. Oh and by the way here’s a little piece of information about the study’s principle author, one which might influence how you assess the quality of his research:
Dr. Darby reports that he received salary support from CogState Ltd and holds stock and stock options in CogState Ltd. He also has received research support from Pfizer Australia.
In other words, his research was funded by one of the major pharmaceutical companies with a vested interest in not finding evidence that chemo brain is anything more than a delusion of hypochondriachal, stressed out cancer patients. He also has a personal financial interest in the company that developed the “assessment tool” that was used in this study. Think that might have had an effect on how his study was structured and the results he “found?” I do.
Sadly, I believe their non-published studies distort the truth about the reality of “chemo brain,” at best, and lies, at worst. How do I know? Because at the same time they were using their non-invasive “cognitive assessment tool” to examine these cancer patients, researchers at Harvard and The University of Rochester found a link between one of the chemotherapy drugs my wife had pumped into her on a daily basis for six weeks, 5-fluorouracil or as it is commonly called, 5-FU:
A team of researchers at the University of Rochester Medical Center (URMC) and Harvard Medical School have linked the widely used chemotherapy drug 5-fluorouracil (5-FU) to a progressing collapse of populations of stem cells and their progeny in the central nervous system.
“This study is the first model of a delayed degeneration syndrome that involves a global disruption of the myelin-forming cells that are essential for normal neuronal function,” said Mark Noble, Ph.D., director of the University of Rochester Stem Cell and Regenerative Medicine Institute and senior author of the study. “Because of our growing knowledge of stem cells and their biology, we can now begin to understand and define the molecular mechanisms behind the cognitive difficulties that linger and worsen in a significant number of cancer patients.”
Cancer patients have long complained of neurological side effects such as short-term memory loss and, in extreme cases, seizures, vision loss, and even dementia. Until very recently, these cognitive side effects were often dismissed as the byproduct of fatigue, depression, and anxiety related to cancer diagnosis and treatment. [emphasis added] Now a growing body of evidence has documented the scope of these conditions, collectively referred to as chemo brain. And while it is increasingly acknowledged by the scientific community that many chemotherapy agents may have a negative impact on brain function in a subset of cancer patients, the precise mechanisms that underlie this dysfunction have not been identified. […]
While these effects tend to wear off over time, a subset of patients, particularly those who have been administered high doses of chemotherapy, begin to experience these cognitive side effects months or longer after treatment has ceased and the drugs have long since departed their systems. For example, a recent study estimates that somewhere between 15 percent and 20 percent of the nation’s 2.4 million female breast cancer survivors have lingering cognitive problems years after treatment. Another study showed that 50 percent of women had not recovered their previous level of cognitive function one year after treatment. […]
The scientists conducted a similar series of experiments in which they exposed both individual cell populations and mice to doses of 5-fluorouracil (5-FU) in amounts comparable to those used in cancer patients. 5-FU is among a class of drugs called antimetabolites that block cell division and has been used in cancer treatment for more than 40 years. The drug, which is often administered in a “cocktail” with other chemotherapy drugs, is currently used to treat breast, ovarian, stomach, colon, pancreatic and other forms of cancer.
The researchers discovered that months after exposure, specific populations of cells in the central nervous – oligodendrocytes and dividing precursor cells from which they are generated – underwent such extensive damage that, after six months, these cells had all but disappeared in the mice.
Oligodendrocytes play an important role in the central nervous system and are responsible for producing myelin, the fatty substance that, like insulation on electrical wires, coats nerve cells and enables signals between cells to be transmitted rapidly and efficiently. The myelin membranes are constantly being turned over, and without a healthy population of oligodendrocytes, the membranes cannot be renewed and eventually break down, resulting in a disruption of normal impulse transmission between nerve cells.
These findings parallel observations in studies of cancer survivors with cognitive difficulties. MRI scans of these patients’ brains revealed a condition similar to leukoencephalopathy. This demyelination – or the loss of white matter – can be associated with multiple neurological problems.
“It is clear that, in some patients, chemotherapy appears to trigger a degenerative condition in the central nervous system,” said Noble. “Because these treatments will clearly remain the standard of care for many years to come, it is critical that we understand their precise impact on the central nervous system, and then use this knowledge as the basis for discovering means of preventing such side effects.” […]
… The study was funded by the National Institutes of Neurological Disorders and Stroke, the Komen Foundation for the Cure, and the Wilmot Cancer Center.
Gee, no major pharamceutical company funded this research, I wonder why? Oh, and by the way, earlier peer reviewed studies published in the Journal of Biology had also linked the cancer drugs “cisplatin, carmustine and cytarabine” to “long-term brain damage,” the death of “neural stem cells and oligodendrocytes, which produce the myelin insulation needed for normal neuronal function” and “impaired neural stem cell division.” In addition:
A Japanese study published [in 2006 ]in the journal Cancer found that breast cancer patients undergoing chemotherapy suffered temporary shrinking in brain regions that control memory and concentration.
A 2006 study by UCLA scientists also found support for the reality of Chemo Brain:
A new UCLA study shows that chemotherapy causes changes to the brain’s metabolism and blood flow that can linger at least 10 years after treatment. Reported Oct. 5 in the online edition of the journal Breast Cancer Research and Treatment, the findings may help to explain the disrupted thought processes and confusion that plague many chemotherapy patients.
So the neuorological damage that chemotherapy drugs can cause is hardly the myth that some medical professionals would like you to believe. Yet, if that is the case, why has there been such little interest in discovering the truth about the effects of these toxic chemicals on brain function? Well, I suspect a conspiracy of silence among both the drug manufacturers who make billions of dollars from the sales of these drugs each year, combined with doctors who didn’t want to believe what their own patients, particularly female patients, were telling them. They wanted to believe that the life saving drugs they administered, despite their known toxicity (indeed, many cancer patients die from the physiological damage caused by the drugs) couldn’t possibly be associated with brain impairment or “mental conditions.” Those had to be related to stress or fear or other pre-existing psychological issues.
These were women after all, known to be hysterical and over emotional. It was easy to dismiss their claims as being unrelated to the great and powerful cancer drugs that oncologists and the pharmaceutical companies relied upon to make their living, and generate profits, respectively. There is big money to be made in treating cancer these days, both by the clinicians who administer these drugs, and the pharmaceutical companies that produce them. And therefore good reasons to finance flawed studies like the one described in The Age, above, while ignoring studies that point to the very real harm these drugs can cause to the brain function of cancer patients.
Chemo Brain is real. Don’t let any doctor or pharamceutical representative tell you otherwise. This is one more way in which our health care system is not looking out for your interests, and one more reason we need a de-politicized FDA, NIH and CDC where corporate lobbyists for Big Pharma aren’t calling the shots behind the scenes and distorting the truth about the effects of the drugs they promote and sell. The story of the repression and denial of the medical condition called Chemo Brain is just one small thread in the vast web of corporate deceit and manipulation of health care consumers for the benefit of large multinational corporations. And one thing is certain: it ain’t the only one.
Gosh, I had never heard of this, but it makes sense that infusing your body with powerful drugs would have some affect on the brain. And as someone who has a propensity for depressive episodes which include many of the symptoms you describe, I empathize with both your brilliant and tenacious wife and with you.
If the drug companies and cancer doctors had their way no one would have ever heard of it.
I don’t know what to say Steven but just this link;
http://www.lonestaroncology.com/index.htm
dr. Luepnitz treated Lance Armstrong and I’ve heard a lot of positive comments about him. I don’t know if ‘chemo brain’ can get cured, but don’t give up hope. Even if you can consult with him over the phone.. at some point, you need to take such active control over your health (know all about it but I had Cushings’ years ago and it was not life threatening, that said, I only have one adrenal gland now) that you need to pursue and be pushy about things all by your lonesome. I changed doctors and what a difference it made.
Don’t give up hope and keep after finding a professional who can help,
all the best
Ingrid
There are lots of us out here who’ve had 5-FU, plenty of candidates for an epidemiological study to quantify the risk. Seems to me that would be a priority item for either the National Institutes of Neurological Disorders and Stroke or the National Cancer Institute. That is, it would be a priority when they are no longer headed by political thugs.
It ought to be an inexpensive study as the data already is out there, just collect and analyze.
Steven, I am sometimes struck by the parallels in our lives. I recognize some of these symptoms all too well, post-breast cancer chemotherapy treatment in my wife, particularly the short-term memory loss. Absolutely agreed that, as good as her doctor is, full disclosure was lacking.
My husband also had Stage IV cancer but without metastasys. The treatment was horrific, six weeks of pumping chemo through a port, three months of daily radiation. (Smokers–that’s what you are in for, even though my husband never smoked. He inhaled Benzene working for Chrysler!)
When you begin, the doctor “recites” a list of possible consequences very fast. You don’t listen. All you hear is the chances of “getting it.”
Yeah, they “got it.” He got permanently numb hands and feet (neuropathy), deafness, very serious liver function problems (which may abate over time), and yes, “chemo brain.”
From what I can find in the sketch literature, it has to do with the changes in permability of cell membranes during chemo. You get very, very dehydrated and your water balance goes crazy. It’s analogous to the “pump brain” effects of open heart surgery.
But no one wants to really research it or admit it exists. That’s because the makers of the drugs don’t want the liability, and the doctors don’t want people saying: “Not sure I want that chemo…” There’s nothing in their training that allows them to help people think through quality of life issues. And there’s almost no research in long term effects. From one doctor: “You’re alive, aren’t you? If I would have given you a choice, you would have said ‘Every day of the week and twice on Tuesdays…'” I’m not so sure.
The radiologist believes that his treatment got my husband’s cancer. Under his breath, he said about the chemo: “That stuff’s poison.” But of course, we have no idea how necessary it was, or whether there were random cells in his bloodstream that might have metastasyzed if we would have refused it.
My best to your wife. There is at least a little research to show improvement over time.
Gee, there are ads on TV about restless leg syndrome medicines that make you gamble and have sex with strangers and no one wants to admit that “chemo brain” exists?
My father died from his benzene exposure. He didn’t smoke either, but inhaled or absorbed enough of it to get a roaring case of leukemia. This was twenty-five years ago.
I know that there’s been research about SSRIs spurring regrowth of brain cells and their connections glions?), which is a theory as to how it helps with combating depression. Don’t know if that is any help with chemo brain, and chances are if Big Medicine doesn’t admit it then not much research is going to happen.
I wrote to the Robert Kennedy firm in Florida, who researched it for nothing (Thank you “Ring of FIre.”) Leukemia is the normal result; there are too few cases of nasopharyngeal cancer in the lawbooks to establish a firm body of case law. But it’s almost certainly Chrysler’s retirement gift to us.
Steven, you and your wife will be in my prayers. I’m sorry to hear of such a painful and ongoing ordeal.
.
From one of the best research and treatment centers, Netherlands Cancer Institute – Antoni van Leeuwenhoek Hospital, Amsterdam. My wife and a nephew were both succesfully operated and did fully recover after treatment. My heart goes out to you both, may there be hope on her recovery and further research on toxicity of these “life-saving” drugs in the treatment of cancer.
Sanne B. Schagen, Martin J. Muller, Willem Boogerd, Gideon J. Mellenbergh, Frits S. A. M. van Dam
Affiliations of authors: Departments of Psychosocial Research and Epidemiology (SBS, MJM, FSAMvD), and Neuro-Oncology (WB), Netherlands Cancer Institute-Antoni van Leeuwenhoek Hospital, Amsterdam, The Netherlands; Department of Psychology, University of Amsterdam, The Netherlands (FSAMvD, GJM)
…
There is growing evidence that some breast cancer patients show impaired cognitive performance on neuropsychologic tests after they receive cytotoxic treatment. For example, a cross-sectional study conducted at The Netherlands Cancer Institute in 1998 (1) found that among women who participated in a randomized trial of adjuvant treatment for high-risk breast cancer, those who received adjuvant high-dose chemotherapy had a statistically significantly higher risk of cognitive impairment compared with breast cancer patients who received no chemotherapy (i.e., the control group; odds ratio [OR] = 8.2, 95% confidence interval [CI] = 1.8 to 37.7, P = .006), whereas patients who received standard-dose chemotherapy did not show a statistically significantly elevated risk compared with the control group (OR = 2.4, 95% CI = 0.5 to 11.5, P = .287). Since then, several cross-sectional studies have reported that some breast cancer patients have cognitive deficits following chemotherapy treatment and that some of these effects persist for up to 10 years after the completion of therapy.
"But I will not let myself be reduced to silence."They really do not.
Neither does Big Insurance.
The whole system is rotted out, top to bottom.
If they REALLY wanted to “cure” cancer, they would go on a 40 year tear to clean up the ecosystem. Clean up our food supplies, our water, our air. Make our daily diets highly nutritious.
But there is no short-term profit in that, and Big Pharma /Dr. Big Brother/Mr. Big Insurance Man are very simply corporate entities. That is, they must show a profit…a profit that is competitive with other corporate entities no matter in what field those corporations may specialize…on a quarterly basis. If they do not, they soon lose value in the stock market and stand the risk of being taken over by other corporate entities that can and will show a profit no matter what must be done in order to achieve that goal.
And down the drain spirals health care.
I am sorry to hear of your wife’s problems.
The same sort of thing happens to most bypass surgery patients…my good-hearted, innocent, trusting father included . Just EXACTLY as Big Airline refuses to pump enough oxygen into the cabins of their airplanes because it is too expensive, Dr. Big Brother “fixes” hearts while not sufficiently oxygenating the blood of its victims and has produced a bumper crop of so-called Alzheimer’s patients as a result.
Which routes even more profit into the health-care system.
Here’s a nice little fact for y’all to chew on. (If of course Dr., Big Dentist has not already taken all of your teeth and replaced them with toxic plastics.) I got this directly from a high-level exec at a major health insurance company, and I know that it’s true because she was naked at the time.
Did you know the fully one quarter of all money spent of pharmaceuticals is spent on people with 6 months or less to live?
Please.
Think about THAT for a moment.
These companies are literally harvesting human death!!!
This whole country now runs on death.
The death of its citizens and the death of anyone who opposes it.
Well…death is a non-renewable resource as well, in the end.
Will we REACH that end?
This next election may be our last chance to find out.
I have been taking quite a beating here for my position that we must ENSURE a Dem win this time or else we have had it.
Quite literally.
All roads lead to Rome.
Chemo brain?
Just another road that leads straight to Rome, Inc.
Are the Dems sufficiently independent of the corporate structure to be able to do any better in this regard than have the Rats?
I dunno.
They can’t be any worse.
Can we afford to take the chance of losing?
Not as far as I am concerned we cannot.
Later…
AG
I’m sorry to hear about your wife’s problem. I had a heavy solvent exposure that has left me very weak and sick — what helps the most is fresh organic foods and lots of antioxidants. Your wife may find some benefit in the same.
Well we try to help her eat right. A complicating factor is her Type 1 diabetes created by the surgery an the subsequent radiation which effectively destroyed her pancreas. And sometimes she just forgets to eat at all.
Thank you Steven. I have a friend who may benefit from this information. Her behavior is similar to your wife’s. She also has brain cancer which has now returned after a year. I will pass on the link.
Steven, remember to take some time for yourself during these times. In order to help care for her, you need to keep your own strength up, especially trying in your case where you are battling your own health issues.
but I’ll keep you and your wife in mind. That’s a lot to go through. Good luck.
Steven, I’m a healthcare professional who has seen many, many instances of chemo brain. It’s important for people to understand the risks of any treatment, and I thank you for sharing your own painful, personal story. I wish you and your wife all the strength, peace, and comfort possible along this difficult journey.
Health problems: If you haven’t dealt with them, you cannot ever know just how the old chestnut is — “If you haven’t got your health…”
How TRUE the old chestnut is…
sorry — compulsive typo fixer.
Steven, my thoughts and prayers go out to you and your wife, I am so sad to hear of her travails and I believe you have health problems as well. I wish you both the best.
There is something very wrong with treatments that can either kill you or save you. My mother had cancer back in the 60’s before chemo, but she had radiation which just burned her terribly with many side effects. I don’t think she ever recovered from that bout of treatment and when next it was suggested to her (in the latter stages) she declined. So as a young woman I became very wary of the medical profession and these extreme treatments.
Cancer is a big business that does not want to see a cure.
This was a great diary btw, including the responses which I found very informative and I will store away the knowledge for future use.
Big giant hugs to you and your wife.
Love,
Diane
Your original post states:
Perhaps if her doctors were more aware of the risks of inducing chemo brain, they would have been less unequivocal in their recommendation for chemo. With the survival rate for pancreatic cancer being so low, the impulse must have been to follow as aggressive a course of treatment as possible.
I’ve never heard of anyone living over a year after getting diagnosed with pancreatic cancer. My wife died of it in October 2006, two weeks after getting admitted into the hospital and one week after getting the precise diagnosis. Our family doctor misdiagnosed the reason for the abdominal pain that she started having in December 2005, and the numerous doctors she saw after that never questioned that diagnosis, despite her getting new and worsening symptoms
I have to weigh in here, since I am a neurologist.
It is true that often doctors do not like to admit the limitations or problems that ensue from treatments they provide. This is especially true among surgeons, but it applies to doctors in other fields as well.
But that doesn’t mean that we shouldn’t require good evidence to establish an effect as being caused by a treatment.
Steven D, you criticized one of the studies above because they measured cognitive function using “only a written test.” In fact, detailed written tests — which take several hours to administer, and another several hours to interpret — are the best measures of cognitive function BY FAR. Adding MRI scans and other highly technical tests adds nothing to the assessment of cognitive function.
It is also very important to separate COGNITIVE effects from PSYCHIATRIC effects. The symptoms you described in your e-mail to the doctor sound much more like manifestations of depression than anything else. Maybe your wife really does have cognitive impairment from her chemo; but it is also possible that her cognition is being affected by depression. And I don’t mean this in the patronizing “your-wife-is-a-hysterical-woman-and-it’s-all-in-her-head” kind of way. I mean that depression can, quite literally, make you stupid.
So maybe your wife has depression because of the chemo, or because of everything else that is going on. But depression is treatable in the large majority of people, so it is important to discuss this with your doctor if you haven’t already.
In any case, I am deeply sorry for your wife’s diganosis and for everything the two of you are going through.
She’s seen a psychiatrist. He says it isn’t depression.
Steven, I’m so sorry to hear about your wife illness and the sadness and frustration it must impose on your whole family. I do hope you don’t give up hope — or just resign yourself to accepting the “inevitable” and perhaps mistakenly attribute all the effects to chemotherapy. Spent my professional career as a behavioral medicine psychologist and bioethicist, i.e., working with patients and families struggling to cope with the effects of severe and chronic illnesses — and sometimes with the effects of treatment. Like the neurologist above, I’m having trouble attributing all your wife’s symptoms to chemo. That isn’t to say that it’s blameless but often there are coexisting emotional and physiological contributions to problems and sorting them out and determining what might be reversible takes really competent specialists.
I can’t tell from your post what kind of work-up your wife has had. You mentioned, e.g., that a psychiatrist said it wasn’t depression. Was that just on the basis of an office visit or was there more formal evaluation. You also mentioned paper and pencil tests in regard to a study but I’m not clear what kind of cognitive evaluation your wife has had. As noted above, a good neuropsychological evaluation involves more than paper and pencil tests and is lengthy. Extensive interviewing and behavioral and perceptual testing are required. Most often, this is done collaboratively with a neurologist so that physical findings can be integrated with psychological findings.
Especially for someone like your wife who is obviously bright and has been functioning at a very high level, the loss of intellectual capacity can be devastating, perhaps much more-so than physical impairment, although diagnosis of a life-threatening illness packs a wallop. An ongoing conversation with someone who understands what she is struggling with can be essential. No matter how sympathetic family members are, it’s often difficult for them to fill this role, especially if they’re dealing with their own sadness, anxiety and sense of helplessness. From the post, I gather you’ve been doing what us cerebral types do — hit the web to see what we can learn. If you haven’t done so already, I’d like to suggest that you get her hooked up with a neurologist who has some experience with these problems and who can refer her for a complete neuropsychological evaluation with psychological and psychiatric followup. If you’re near a medical school-associated hospital, you’re most likely to find such specialized evaluation and treatment there. I’m certainly sympathetic to your complaints about drugs, drug companies, and the havoc that can be created by treatment (and the way it can be ignored or glossed over by professionals) but I hope you will explore all options before deciding you’re at a dead end.
Your journey is a very difficult one but I have a sense that there is some help available.
Saw the psychiatrist on several visits. She’s also been seen by a neurologist and had some sort of brain scan, probably an MRI. I’m not sure only because she doesn’t always tell us everything or forgets what has been done, but I know I’ve heard her mention brain scan.
And yes, we go to a hospital/see doctors associated with a medical school. Our city actually has a pretty good reputation in terms of health care services that are available.
Ps, I never pillory people offering help. I hope no one else will either.
Thanks for responding, that’s helpful. (And didn’t expect to be pilloried, was just replying to a thread with that name.)
A couple of things occur to me now that you’ve filled in some details. FWIW:
I hope this helps some. Rather than take up more real estate here on this issue, it’s fine to email directly to my address if you would prefer. If you don’t have access, Booman should.
I am so sorry to hear about your wife, Steven. I have always been opposed to Chemo after I saw what it did to my mom.
Fortunatley there is a new (and experimental) treatment with no side effects. They use radio waves and nano tech. It will be great to see it become a reality.
I had been thinking about you alot this past week as I had a call from my boss telling me that his wife had passed. Maybe he called me personally because he knew I could relate to being a caregiver of a loved one. I don’t know, but what I do know is that the role you have asks for backbreaking strength.
I’m also convinced, (as happened with me), that you may well be the person that puts together the pieces of what has specifically happened to her and what may lead her to recovery. The doctors are captives of research, some of it wrongheaded as you cite, much of it incomplete and none of it case specific to your wife.
I would add that you need to continue to take care of yourself. Remember that DaVinci claimed that his best habit was to take breaks frequently to regenerate his own intellect.
My dad suffered from multiple meyaloma. The chemo allowed him to extend his life by three or four years, I am sure, and those were wonderful years, perhaps the best years of his life.
On the flip side, when his cancer began spreading again after two successful remissions, the doctor decided to give him a massive dose of chemo to see if they could buy dad more time. We were all against it, knowing he was so weak.
He died a few days after his treatment. It was the chemo, not the cancer, that killed him, as is often the case.
Modern cancer treatments need some kind of cost/benefit analysis, but since each case is different, this is hard to do. How to know if you will develop a severe case of chemo brain, for instance.
My heartfelt sympathy goes out to you and your wonderful wife. Hopefully, her condition will improve.
Second time I’ve been here today. There are times when you’d like to say something, but just don’t know what to say. At the minimum, sorry, Steven for what you and your wife must be going through.
Just say anything. That is much appreciated.
And remember we have millions of people faced with this issue. If we don’t kick Big Pharma lobbyists out of the FDA, we will continue to get meds pushed on us whose full effects are being denied and suppressed.
Steven – I read this earlier and found myself thinking about your wife, you, your children – so many losses large and small.
I do not know if you are in the frame of mind for suggestions or not. I do believe we are “primed’ for healing, though what form the healing takes may be to a different place than what was “before.”
Adding to those who have reminded you to include care and time for yourself.
Holding you and yours in my heart thoughts.
And thank you for sharing.
Well, thank you. If anything it’s forcing me to be a more patient person, and work at staying calm.
whew…steven. l really don’t know what to say other than that you, and you wife and sister will be in my thoughts.
l’m still reeling from my mothers sudden death at the end of february, and subsequent travails.
my heartfelt wishes for a positive outcome.
peace and blessings
I’m very sorry to hear about your Mom. That can be a very big blow, especially when its so unexpected. Take care.
Steven, it’s been ages since I commented in (or posted something on) BT – I’ve been going through my own health struggles, as you know. But I remember when your wife was going through her treatment, and this is just heartbreaking.
I’m not going to offer treatment suggestions; I find it maddening (though well-intentioned) when people do it for me. But I wish you, your wife, and your family the best. And, from someone who was supposed to be dead 15 years ago and has been chronically ill ever since, I want to echo as strongly as possible what a couple of other people have raised: be sure to take care of yourself and develop your own support network. You’re in for a long and often thankless, even torturous journey in your role as primary caregiver; you’ll need the help. Be well.
Hi Geov, good to see you. I hope you’re doing well, or at least the best you can.
I’m so sorry to hear about your wife. Your story reminds me of chronic fatigue in a lot of ways. Is there any treatment that will at least help with the symptoms?