The Elephant in the Room
Your local oncologist told you CLL was the “good cancer” to have, you should therefore go home and be happy.
Did your spouse heave a huge sigh of relief and quit worrying forever more? Did your kids lose that scared look and go about their happy days of childhood? Did you buy that line, yourself? If you did, you are made of sterner stuff. Or you have your head stuck in the sand or some place else where the sun does not shine. Most of us smelled a rat right away. How can an “incurable cancer” be a “good cancer”? This kabuki dance of switching from “Watch & Wait” when nothing much happens to life threatening emergencies that leave you breathless with anxiety – how does one cope with that kind of mind-bending transition?
Quality of life: patients and their caregivers
Yesterday one of our members who is contemplating a mini-allo stem cell transplant asked me for a good reference article dealing with quality of life of patients after they go through the procedure. Wise man. Most often, I get requests for survival statistics, new approaches for treating graft-versus-host-disease, etc. Very few ask about quality of life the day after. Well, here is the article I sent him, just in case any of you are interested as well. The abstract is below, you can read the full text by clicking on the link.
Blood. 2009 Jul 2;114(1):7-19. Epub 2009 Mar 31.
Pidala J, Anasetti C, Jim H.
Department of Blood and Marrow Transplantation, Moffitt Cancer Center, Tampa, FL 33612, USA.
High-dose therapy with allogeneic hematopoietic cell transplantation (HCT) offers effective control and potential cure of hematopoietic malignancies, but with the cost of associated morbidity that includes adverse effects on quality of life (QOL). A growing body of literature has characterized this impact. Longitudinal studies suggest early moderate impairments that largely return to pretransplantation levels by day 100; the majority of studies suggest that greater than 60% of patients report good to excellent QOL in years 1 to 4 after HCT. Comparisons of allogeneic HCT with autologous HCT and standard-dose chemotherapy suggest impairments in QOL and a different trajectory of recovery in allogeneic HCT, but these conclusions are limited by confounding variables. Cross-sectional studies suggest larger and more persistent decrements in QOL in comparison with matched noncancer controls and population normative data. Acute and chronic graft-versus-host disease (GVHD) are significant threats to QOL. Behavioral interventions show promise to maintain or improve quality of life after allogeneic HCT. The review concludes with recommendations to investigators and clinicians as the state of this research advances.
A while back Mayo Clinic conducted a CLL patient survey, in cooperation with CLL Topics. It was a massive survey (thanks to our dedicated and pro-active members). Results of that survey were sliced and diced and published as a series of articles, yours truly was a co-author rubbing shoulders with the like of Dr. Neil Kay, Clive Zent, Tim Call and Tait Shanafelt of Mayo.
Br J Haematol. 2007 Oct;139(2):255-64.
Quality of life in chronic lymphocytic leukemia: an international survey of 1482 patients.
Shanafelt TD, Bowen D, Venkat C, Slager SL, Zent CS, Kay NE, Reinalda M, Sloan JA, Call TG.
Mayo Clinic College of Medicine, Rochester, MN 55905, USA. email@example.com
Although a diagnosis of chronic lymphocytic leukemia (CLL) can have a profound effect on the quality of life (QOL), few studies have objectively measured the QOL of CLL patients or compared it to the general population. We conducted an international, web-based survey of patients with CLL using standardized instruments with published population norms to evaluate fatigue and QOL. Co-morbid health conditions were assessed using the Charlson Co-Morbidity Index. Between June and October 2006, 1482 patients with CLL responded to the survey. The physical, social/family, functional, and overall QOL scores of CLL patients were similar to or better than published population norms. In contrast, the emotional well-being scores of CLL patients were dramatically lower than that of both the general population (P < 0.001) and patients with other types of cancer (P < 0.001). QOL scores were lower among individuals with advanced stage disease (all P < 0.05). Factors associated with lower overall QOL on multivariate analysis included older age, greater fatigue, severity of co-morbid health conditions, and current treatment. CLL has a profound impact on QOL at all disease stages. The effects of CLL on QOL appear to differ from that of other malignancies with a more marked impact on emotional QOL. Research identifying efficacious psycho-oncologic support interventions for patients with CLL is needed.
If you thought you were alone in feeling blue, here is your proof that you are in the majority. CLL patients suffer from loss of emotional well-being and this is worse than compared to patients with other types of cancer! I doubt anyone did a similar study about CLL spouses and caregivers, but I am willing to bet a fistful of dollars to a single krispy kreme glazed donut that caregivers get depressed too. I walk in your shoes.
“Magic Mushrooms”? Are you serious?
PC and I spent our grad school years in Ann Arbor Michigan. We watched, mouths gaping, as our new American friends experimented with all sorts of drugs and mind altering substances. We were too newly out of protective cocoon life in India and frankly too chicken to try anything more risky than beer. What goes around does seem to come around. There is a recent interesting press report about psilocybin, an extract of “holy mushrooms” and how it may be able to help depression in cancer patients. We are talking life altering and transcendental experiences under carefully controlled conditions of a clinical trial, at the venerable Johns Hopkins University Medical Center, no less. The study is published in Psychopharmacology, well regarded journal. Here are more layperson friendly excerpts from a WebMD article. Click the link to read all of it.
Magic Mushrooms Drug Shows Promise as Therapeutic Tool
Researchers Say Lower Doses Produced Lasting Benefits With Less Risk of a ‘Bad Trip’
By Brenda Goodman
June 16, 2011 — Psilocybin, a powerful psychoactive substance derived from magic mushrooms, can safely be used in a controlled setting to help people have positive and often life-altering experiences, a new study shows. The study is part of a renaissance of research into the benefits of hallucinogenic drugs that were first popularized, and villainized, in the counterculture movements of 1960s.
Ongoing clinical trials are testing agents like psilocybin to to ease anxiety and depression in people who are dying of cancer. The new study, from researchers at Johns Hopkins University School of Medicine in Baltimore, tested different dosing regimens of psilocybin in 18 healthy adult volunteers. After trying psilocybin just one time, many of the volunteers in that 2006 study reported having profound spiritual and mystical experiences that made them more open and honest, less judgmental, and closer to family and friends, and some rated it as the most personally meaningful experience of their lives.
But about one-third of those volunteers also experienced transient periods of overwhelming fear and anxiety. They felt afraid that they were trapped, for example, or that they were going to go insane. Most of the time, those feelings passed during the session, but in a few cases, they went on for hours. “That’s known to be one of the risks of recreational use of these compounds: People can have panic reactions, fearful reactions” says study researcher Roland Griffiths, PhD, professor of psychiatry and behavioral sciences and neuroscience at Hopkins.
In the new study, Griffiths and his team found that when the dose of psilocybin was reduced slightly, most people still had the transformative mystical experience, with far less fear and anxiety. Nearly 75% of the study volunteers reported having positive, highly beneficial experiences on the two highest psilocybin doses used in the study. Almost half rated taking the drug in a supportive, therapeutic setting as the single most meaningful experience of their lives.
For the study, Griffiths and his team recruited 18 physically and mentally healthy adults. Each study participant was given four doses of psilocybin, with a month between each dose. Doses were based on body size and were 5 mg, 10 mg, 20 mg, or 30 mg for every 154 pounds of body weight. A placebo dose was also given. Participants were randomly assigned to receive either gradually increasing doses or gradually decreasing doses, to test a hypothesis that it might be more effective to start with a high initial dose. Neither the study participants nor researchers knew what group the participants were in or what dose of the drug they were going to get when they showed up for their sessions.
“When you work with people that have emotional issues, they are going to have difficult experiences,” says Rick Doblin, PhD, director of the Multidisciplinary Association for Psychedelic Studies in Santa Cruz, Calf. “Those are emotions that we anticipate, and to a certain degree, people need to work through them.” Indeed, many people who went through so-called “bad trips” also reported that the feelings were eventually replaced by more positive thoughts during the same session, and none reported that the fear or anxiety they experienced caused any long-term harm.
In contrast, nearly three out of four people on the highest psilocybin doses rated their experiences as mystical, transformative, and highly beneficial. “The core of the mystical experience is a sense of the interconnectedness of all people and things,” says Griffiths. “That’s accompanied by a sense of sacredness, a sense of the experience being more real and more true than everyday waking consciousness.” Many reported that the drug facilitated lasting positive changes leading to better marriages, friendships, and family relationships. Many also reported taking better care of themselves and enjoying life more.
“If you really get this sense at the core of your soul, that we’re connected to a greater whole, and I think we all know this at some level … there’s something about that that’s very benevolent and uplifting and positive,” Griffiths says. Notably, the positive changes reported by participants have lasted more than 14 months after their last sessions.
Clinical trials using psilocybin (currently recruiting)
I located three trials that may be of interest to our members.
NCT 00957359 is being conducted at New York University. The title of the study is “Effects of Psilocybin on Anxiety and Psychosocial Distress in Advanced Cancer Patients”. Estimated enrollment is 32 patients and the study started in February 2009. Expected date of completion is January 2012. Refer to the NCT 00957359 citation for the study details, contact information and their inclusion criteria.
NCT 00465595 is being conducted at Johns Hopkins School of Medicine, Baltimore MD (Sidney Kimmel Comprehensive Cancer Center is one of the collaborators). The formal title of the study is “Psychopharmacology of Psilocybin in Cancer Patients”. Estimated enrollment of this study which started in April 2007 is 44 patients. Completion date is October 2011. Once again, please refer to the citation link for all additional details.
Not a cancer patient yourself but a spouse or caregiver struggling with your own demons? Here is a study that might fit your situation. (Frankly, I might be tempted to see if I am eligible to participate in this clinical trial myself).
NCT 100802282 is also being conducted at Johns Hopkins, Baltimore MD. The official title is “Effects of Psilocybin and Spiritual Practice on Persisting Changes in Attitudes and Behavior”. 75 healthy volunteers will be recruited in this clinical trial that started in August 2009 and expects to complete by April 2014. Click on the citation link for all the details.
Our worlds have changed right from under our feet. It is not just in Western world of USA and affluent countries in Europe and elsewhere. When I go back to India to visit my Mom, I hardly recognize the country I grew up in for the first 21 years of my life. Extended families with many generations living under the same roof are now the rare exceptions, not the rule. Back then, if something was worrying me, I could sidle up to an aunt, grandmother, or some other adult who happened to be free and I could look for a nice cuddle, a little gentle scolding for worrying too much, emotional comfort to take away the angst and fear. Today, people are busy from dawn to late night, the rat race encompasses adults and children as well. Who has the time to deal with anything other than hurriedly putting out the latest fire? You don’t get double digit GDP growth every year by sitting around and contemplating your navel or examining the meaning of life! The good news I suppose is that we have options today that were not available then. We can turn on the computer or smart phone and send an email or “tweet” – hoping that someone out there will notice.
There are all kinds of resources out there, if one is interested. My GP is more than willing to prescribe Ativan to take the edge off of my restlessness and difficulty sleeping at night. If the depression is a bit more bothersome than that, how about one of the modern miracle anti-depressants? Dozens of them are advertised on TV, a case of direct-to-consumer marketing that I deplore. Not too thrilled with the idea of better living through chemicals? Don’t want to get hooked on yet another chemical crutch? My ever so busy daughter is quite willing to find me a good therapist, someone who will fix what ails my psyche by listening to me three times a week, for a modest charge – of course. Whatever happened to people who listened to you because they cared, not because they got paid to do so?
So many options and yet so little real help. Good friends or family who will spend time with you, grieve with you, shed a few tears and remember the people and times past – those are becoming harder and harder to find. Time is supposed to heal. But that is what most of us do not have, time to spare for others in the middle of the grieving process. I wonder how long Jewish people will continue the tradition of seven days of sitting shiva – before our attention deficit age decides to speed things up just a bit. Seven days!? Surely that is overkill, Dude!? Can’t we say au revoir to the dear departed in a more time-efficient modern manner? A hallmark card in lieu of sharing personal grief, money sent to a favorite charity in lieu of flowers or a personal visit? A psychiatrist and bottle of pills instead of good friends to listen to your pain?
Each of us have to find our own answers to these questions, in ways that make sense to us. For the spouses and caregivers, there are many extra dimensions of worry: who will take care of you when it is your turn? When the dreams of golden years yet to be shared with a much beloved spouse fade away into the sunset, the little kids you raised together now ‘live’ only in fading snapshots in precious scrap books and memories, how do you pivot smartly and start planning for the “Mean girls in Assisted Living“? Who will walk down memory lane with you, without surreptitiously glancing at their watches or rolling their eyes? Will there be enough money left over, after the last of the medical bills have been paid?
I do not know if the clinical trial I discussed above will provide any more answers, but they may be worth a try if you are looking for answers not found in prescription bottles or conventional counseling, religious or otherwise. But if you are inclined to try “magic mushrooms” on your own, please don’t. Be sensible and try them only in the context of a well protected clinical trial. I mean, it is bad enough we are all a little nuts with this CLL thing, but you don’t want to become really crazy, do you?
The other day I had my annual blood work done. I looked over the CBC report and it looked really strange to me. I am so used to seeing all kinds of asterisks, numbers and percentages out of whack – so much so that the neat rows of numbers with everything within normal bounds looked bizarre and unnatural. I do not have CLL. But it sure feels like I do.I know it will be the death of me someday, as surely as it killed my husband. Is that a psychosis? A psychiatrist may think so. After due deliberation, I decided on my own diagnosis. I choose to call it being a died-in-the-wool romantic. That is my final answer and I am sticking to it.