Live CLL Patient Forum @SeattleCCA Draws a Full House!

On July 26th at the Fred Hutchinson Center, Patient Empowerment Network, Seattle Cancer Care Alliance and Patient Power are hosting a live patient forum for those patients, families and caregivers who are coping with living with Chronic Lymphocytic Leukemia.

Expert physicians talk, panels discuss and patients tell their stories. All learn from this unique experience.

Physician experts included:

David Maloney, MD, PhDMember, Clinical Research Division; Professor of Medicine, Division of Oncology, Fred Hutchinson Cancer Research Center, University of Washington School of Medicine

John Pagel, MD, PhDAssociate Member; Associate Professor, Division of Oncology, Fred Hutchinson Cancer Research Center, University of Washington School of Medicine

Drs Maloney and Pagel talked about treatment options and new developments in the field of CLL. The current treatment options of chemotherapy, antibodies, BTK inhibitors and combination therapies were discussed and the treatments in development were then presented and carefully explained. Dr Maloney talked about his work on Chimeric Antigen Receptors (CARS) as well as other new research developments. Great care was taken by both physicians to point out that treatment is extremely individual and should be a decision reached after careful and thorough discussions with the patient and medical team.

Patient panelists were:

Charlie, Patient Advocate , Esther Schorr, Caregiver, Rich Siegel, Patient Advocate, and Lisa Weiss, Patient Advocate

Screen Shot 2014-07-27 at 7.11.07 AMThe panelists introduced themselves and gave a brief history of their experience living with CLL. Experiences ranged from Charlie who has been asymptomatic and has never received treatment for CLL to Lisa who has had numerous treatments and relapses during her journey with the disease.

The common thoughts and messages running throughout the presentations were those about support of family and friends and the importance of living well, living healthy and enjoying each day as it comes. The feeling in the room was a positive one. Be as educated about the disease as you can be, make sure that you have an excellent doctor and medical team that you can rely on, join support groups or start them, and be grateful for each moment.

In the afternoon, Drs Maloney and Pagel spoke of treatments, side effects and the importance of communication and mutual trust. Several points were discussed:

  • Trust your doctor – get a second opinion if you wish, but once you have found a doctor that you feel comfortable with, trust him or her.
  • Be informed and read up on your condition
  • Communicate with your doctor and medical team and ask questions
  • Be careful about taking vitamins, supplements or other products. Discuss all products with your doctor
  • What works for one person may not work for another. All treatment is individualistic
  • Use common sense and lead as healthy a lifestyle as you can.

The patient and caregiver panel had some words to share on living with CLL:

Standing Room Only!

Standing Room Only!

  • You are not alone! Ask for help and include family members in the discussion; you need their support.
  • Do not depend on your oncologist/hematologist to provide emotional support. Get professional counseling or group support. There are many organizations and online patient support groups that can be very helpful.
  • Live well and live healthy. Use common sense with diet and exercise. If you want to take any vitamins or supplements, discuss with your doctor first.

Caregivers and family members were a large part of this event. They talked about their hopes and fears, about involving their children in frank discussions about illness, death, what the future may bring and how to cope with a family member who has a serious illness. Spouses, siblings and children of patients spoke out. The energy, hope and commitment was felt by all. It was a powerful meeting indeed!

Randy Broad, Lung Cancer Survivor, Speaks Out for PEN

Watch this video as Randy Broad, lung cancer survivor and PEN member speaks out and invites others to join PEN!

(this video was produced by Patient Power for the Patient Empowerment Network)

9 Ways to Propagate Patient Power

Heidi Gottlieb

Heidi Gottlieb

A success story is about having a positive outcome. We mostly hear about success stories as monetary achievements, but that’s really selling the word “success” short. I’m a brain cancer survivor. That’s a success story! I was barely out of my 20s when I was first diagnosed with what was first believed to be a benign brain tumor. My oldest daughter was only a year old then. She just turned 25. She’s only four years younger than when I was first diagnosed.

Where did the time go? I think to myself, “life is half spent before we know it.” There’s a saying that experience is the best teacher, but the tuition is high. Oh, so true! Through my treatments and surgeries I’ve lost the hearing in my left ear; the ability to swallow on one side; certain vision abilities; my tongue is paralyzed on one side (amazingly, the other side works to the point that you mostly can’t tell about the paralyzed side); I also have some memory loss. But I’m still here.

While of course I wouldn’t have chosen these circumstances — they happened to me and because of them I’ve gleaned a great deal of knowledge in a few particularly important areas: doctors, the business of medicine and being a patient. It’s because of my medical history that I have met or been treated by so many doctors. Some of those doctors have at times actually slowed down my path to better health or recovery — but I have learned from those experiences. I also know that there have been doctors without whom I wouldn’t be here today.

The enlightenment that I have achieved is important to share with those that may be at the beginning of their own healing path or one day will be walking it. They pertain to any healing path. Here are nine of the most important things I’ve learned.

If you know something is wrong, something is most likely wrong 
There had been years in between my being diagnosed wrong, and being diagnosed right — I had many symptoms. My particular cancerous brain tumor was relatively slow growing; the yearly MRIs indicated that “it may be larger due to angle or technology.” Instead of this being an alarm bell, or at the very least an indication for further testing, my doctors were lulled into a state of complacency.

I was seen often, looked quite healthy, and so I was probably just overreacting. I wasn’t. The tumor that looked slightly larger every year, was slightly larger. By the time I found a doctor that listened to me, and didn’t just look at me… the tumor had grown to twice the size than it was when it was originally diagnosed and treated. None of my previous doctors had compared my most recent MRIs with my original MRI to see it had grown. Listen to yourself, and campaign heartily.

Freedom to Feel
After you’ve received your diagnosis, you need to have the freedom to feel what you feel. You may have friends and family members that will put different spins on your things. There are those that are full of “gloom and doom.” Then there are others that will tell you not to be depressed when you’re depressed. They will tell you to be appreciative instead for all you do have. The intentions of these upbeat souls, is in the right place, but it will be difficult not to feel depressed some of the time. It’s okay to feel down about being sick, it doesn’t mean you can’t feel positive about your outcome, nor does it mean you can’t feel appreciative about what you have. Just knowing that is part of Patient Power.

Doctors are just people 
We put doctors on a pedestal. We believe them to have our best interest in mind, and I’m sure most do. However, doctoring is also a business. Doctors either consciously or unconsciously make decisions based on their ego, their desire to be noticed in the medical field, maybe even based on multiple reasons. This may sound callous, but think about it. Haven’t we all made a business decision here and there based on multiple reasons? They do what they have to do-you do what you have to do. Again being aware that this may be a part of the landscape is part of having power as a patient. Don’t be flattered that a doctor is interested in taking you on as a patient just because he’s considered an excellent doctor. Think about why the doctor will be good for you.

Doctors will seldom say “I don’t know” 
How much easier the process would be if doctors that don’t know, just said it. You could then take this non-information and move on, but instead a “not knowing doctor” can really slow down the process. You end up wasting valuable time on an opinion that should not even be in the mix. This makes the process more difficult, but being aware that it does exist, keeps you aware and on your toes, and a better patient. Try asking your doctor “Do you know if this will work?” “How will it work?” More information is better. If the answer is not what you want to hear, that’s okay. It’s an answer. You won’t be going to that doctor.

Use the Internet
This may seem obvious, but there are still those that don’t have access to the internet, don’t know how to use it, or perhaps are feeling too overwhelmed after receiving a bad medical report to go searching on the internet for themselves. If you don’t have or know how to access the internet, find someone else that does. There have been stories written about how people self-diagnose online. We’ve all read these stories and it’s important to understand the difference between finding out information after you’ve already received a medical diagnosis and trying to hunt down information to diagnose yourself before you’ve even been to a doctor about what is ailing you. That difference is enormous.

The Internet is invaluable. When I had my first surgery in 1990, there was no real Internet. What did exist was extremely slow, and had very limited information. These days, if you dig, you can find out so much, not only about your illness, but about your doctor’s background, and what other treatments and research is available as well. There are services that allow patients to comment, even rate doctors with whom they’ve consulted. This is good information. Information is part of Patient Power.

The more information the better 
I like doctor rating sites. These services keep doctors on their toes. If a doctor asks you to sign a legal document agreeing that you will not participate in one of these sites (I’ve heard that this is something that some doctors are doing now), walk away. If a doctor is that worried about you going online and making a negative comment about them, then this is not the doctor for you. Most doctors aren’t concerned about these sites because they know they’re doing a good job.

No doctor should make you feel your questions are a waste of time
No doctor should make you feel your questions are stupid, or that you’re stupid. Again, not all doctors know all things. Sometimes condescension is “I don’t know” expressed differently.

Opinions, opinions, opinions
It’s said you can take opinions all day long. You can… and you should. The more complicated the medical issue, the more opinions you should get. Try and get as many as your insurance will pay for, or you can afford. Yes, It can get to be overwhelming to get/have many opinions; it’s definitely easier to get only one — but what price easy? The one opinion you have may be a wrong opinion. It is so worth taking the time and doing the research. The best solution for you will become clear. I know from experience that this is true.

Always trust your gut
I asked one of my doctors about a certain therapy, and he emphatically told me that the therapy was not for me. Turns out he was wrong. That therapy is what may have saved my life. When he told me it was not for me, it didn’t sit right. I trusted my gut and pursued it anyway. Over my years as a patient, I have had a doctor strangely come to my bedside and cry. I had another who only returned my calls at 11:30 at night. Another told me we would be seeing each for the rest of my life, only to then have a follow up conversation several days later where he wished me luck, but that I should be seeing another doctor for follow-up.

All these things at the time seemed strange, but looking back now with hindsight, I know that all of these responses might have been indications of either things that were not right in their own lives, or in the most glaring cases, failing on the part of that doctor. So listen to your gut. If it doesn’t feel right, it probably isn’t.

(This post was originally published in Huffington Post)

 

Brain Cancer Survivor Helps Others Through Life Crises

Heidi Gottlieb

Heidi Gottlieb

Heidi Gottlieb is a brain cancer survivor who uses her experience as a patient and cancer survivor to guide others through their own life crises.

Twenty-five years ago, Gottlieb was diagnosed with a brain tumor. Her experience with being diagnosed at a young age (29 years old) at a time when there was no internet and limited treatment options for brain cancer taught her perseverance and the importance of patient empowerment.

After being misdiagnosed, enduring two grueling brain surgeries, undergoing two bouts of radiation treatment and a long re-education period where she had to relearn certain life functions such as how to swallow, Gottlieb made a commitment to teach others how to help empower themselves and march forward rather than give up.

One of the first events Heidi Gottlieb undertook as a cancer survivor and advocate for patient empowerment was to create a

Heidi Gottlieb during her fundraising walk from New York to Boston.

Heidi Gottlieb during her fundraising walk from New York to Boston.

250-mile fundraising walk from New York to Boston. As she walked, she spoke at schools and organizations along the way about her experience and her thoughts and feelings about cancer survivorship.

That walk taught Gottlieb that she wanted to dedicate her life to helping others through their life crises. She enrolled in classes and recently earned her certificate through the International Coaching Federation  as a Professional Coach.

In her role as a Transformation Coach, Gottlieb teaches people (20% are cancer patients) how to overcome personal crises, energize themselves, reach their full potential and move toward a more productive, happier life.

There is a lot written about empowering the patient, which is good. But the people that I want to reach are the survivors. Those who want to lead a so-called normal life, have a job and have a personal life. These people are sometimes “lost”. They are thinking about getting new jobs and wondering if they should tell their potential employer that they have cancer. I would like to help them”.

I asked Gottlieb if she considered herself an empowered patient. She replied,

“Yes, I am an empowered patient. I have been a student of my illness for 25 years and if you have been a student of anything for 25 years, you live and breathe it. I have been immersed in the medical field since I became ill because I wanted to know everything I could about my condition. It was difficult. There was no internet. Since I was not a medical student, there was no way to research about my brain cancer. I was bounced around from one doctor to another. I underwent surgery and radiation without knowing much about what I was doing.

 After my experience, I really wanted to dedicate my time to finding out more about brain surgery, brain cancer, and cancer survivorship in general.”

I asked Gottlieb what advice she could give other cancer survivors. She explained her philosophy as follows:

 “I know that the fact that I have been through so much and am still here is highly unusual. Not many brain cancer patients are survivors. My cancer could come back at any time. I have come to a place where I try very hard to live in the now. You never know what will happen. Through my experience, I have been given the gift of understanding that I must enjoy every moment.”

 Heidi Gottlieb has her own website where you can learn more about what she does as a Transformational Coach. She blogs often about her feelings on being a cancer survivor and an empowered patient. I have posted one of her latest blogs; read it here.

Bribing Anxiety

Talking to a group of patients at the City of Hope event.

The author talking to a group of patients at the City of Hope event.

So, the last time that I had my regular appointment was a year ago. I was more than a year past treatment and my blood work came back good, my energy level was good and I had no issues to report. I was told that my complete remission was still in place and that the next appointment would be in six months. As it happens, the treatment that I received in clinical trial for my “moderately severe” matrix of genetic type of chronic lymphocytic leukemia (CLL), mutation status and symptom presentation worked out pretty much perfectly. Time to negotiate. “Let’s make it a year?” I implored. They set the appointment for six months but assured me that they would get together and consider the proposed new plan that I put on the table. A few weeks later I noticed, while checking my records on the online portal, that my next appointment had, indeed, been moved out to a year. And now I have that appointment coming up in a week or so.

I have embraced my remission and attacked life. I’ve been doing more over the past year and am just plain getting after it. I hardly ever say no to an opportunity, I smile a lot, I travel, I explore… And now I’m filled with anxiety. I want to take a nap. Does the fatigue mean that remission is over? I had a strange, very mild rash on my hands that really didn’t itch, but lasted a few weeks. Does that mean that there’s some bizarre infection in my body? My joints have been achy. I’ve had some pretty amazing headaches. Does that mean I have to start adding the term “relapsed” to my cancer vocabulary? Or am I just being a normal human being reacting to the unknown?

I know that I am reacting normally to the stress of cancer and that my responses are pretty much how all of us, at least quietly, deal with all the little things. We are told to take an inventory of everything and always report changes to our health care providers. We do this because some changes can be the early warning trip wire that our cancer has decided to change the rules. So we (and by we I mean I!) will always wonder if the next item up on the “how do you feel” menu is a harbinger of cancer or just the soreness that a 50+ year old guy feels after shooting the rapids in an inner tube for 5 hours. Anxiety and stress is something that gets added to the lives of every single person that is touched by cancer, patients and caregivers. We really cannot banish it from our lives, but we can rein it in.

A week of worry is not going to change the results of the upcoming hospital assessment. I’m either still in remission or not. So I will try to occupy my time and be productive. I’ll cook some fabulous meals for my family, give a presentation to a local civic group, mow the grass, write some articles, research a project… And try to minimize the amount of time I allow the anxiety to actually interfere with my life. I know that I cannot banish it, so I will try to paint it into a corner. Oh, and I’m bringing my doctor a bottle of wine. I’m told he likes wine and maybe a “bribe” will keep me on the one year check up cycle? Don’t give away my secret plan!