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CATEGORIES [ SURVIVORSHIP, GENERAL ]

Getting well: Cancer rehab

BY GUEST BLOGGER | DECEMBER 28, 2010

CURE invited Julie Silver, MD, cancer survivor and rehabilitation specialist, to offer suggestions on healing physically after cancer.

One of the questions I am often asked is, "What exactly is cancer rehab?"

Since rehab has not traditionally been part of the cancer care continuum, it's not surprising that many people are confused about what it might involve. However, if someone has a stroke, then most people understand that rehab involves doctors who can order tests and prescribe medications and other treatments. Rehab also usually involves physical therapy and may involve occupational and speech therapy as well. An individual with a hip replacement usually requires orthopedic rehab with physician involvement and physical therapy at a minimum. Cancer rehab is very similar to all other kinds of rehab. The goals are the same--help someone function at the highest possible level by building up their strength and stamina, reducing pain and fatigue, improving problems with balance, gait swallowing, joint range of motion and a host of other problems.

In short, rehab is a critical part of cancer care. But, few survivors ever get it. Why?

There are probably a lot of reasons why cancer survivors don't get rehab, but the one that people often cite (which simply isn't true) is that in the past there weren't survivors to treat. That hasn't been an issue for more than half a century. Sure, every year acute cancer treatments get better and better, but surviving cancer is not a new phenomenon. Unfortunately, offering cancer rehab to survivors is. Even though cancer rehab has been around for a long time, it is not usually part of the care continuum, so few survivors ever get it.

Indeed, developments in and acceptance of cardiac rehab and other forms of physical retaliation are many decades ahead of cancer rehab. And, cancer survivors are needlessly suffering. Being told over and over again to "accept a new normal" when instead they should be referred for appropriate rehabilitation interventions and offered the opportunity to heal as well as possible.

So, the next time someone tells you to accept a new normal, try asking them if they've heard about the growing movement in cancer care--cancer rehab. If they need more information, here are some quick facts:

Who are the main cancer rehab experts?

Physiatrists (doctors in physical medicine and rehabilitation or PM&R) and physical/occupational/speech therapists. There are many others who contribute to rehabilitation care, but start your rehab with these experts.

What are the benefits of cancer rehab?

Improving your physical--and emotional--function.

Why is cancer rehab needed?

Because it's not fair to survivors to tell them to accept a new normal when there is proven medical care that can help.

How do I know if cancer rehab will help me?

If you would benefit from one or more of the things on this list, talk to your doctor about cancer rehab:
> Improve endurance and cardiovascular conditioning
> Increase muscular strength
> Improve joint range of motion
> Decrease pain
> Lessen fatigue
> Improve swallowing
> Improve speech
> Assist with surgical recovery
> Improve immune function
> Increase bone density
> Manage lymphedema
> Improve physical function
> Improve balance and coordination
> Improve quality of life
> Decrease psychological distress

Why isn't cancer rehab part of my cancer center or hospital?

Good question, ask your oncologist! It should be.

How is that changing?

The rehabilitation community is becoming much more award of the need for advocacy for cancer rehab. Survivors are beginning to realize that is can be made available to them if they insist on it. My own work involved helping hospitals, cancer centers, group practices and individual clinicians develop and implement cancer rehab services. You can find out more about my work at www.OncRehab.com or www.JulieSilverMD.com.

What can I do to help?

Talk to the members of your oncology team and ask what rehab services are available to you and other cancer survivors. Tell them to check out www.OncRehab.com for information about the STAR (Survivorship Training and Rehab) Program. Don't accept "rehab" as a referral to an exercise physiologist or acupuncturist or any other provider who is not an expert specifically in rehabilitation medicine. Keep in mind that insurance companies pay for clinical care that is provided by rehabilitation experts such as physiatrists and physical/occupational/speech therapists. They don't pay for cancer rehab that is not provided by trained clinicians in rehabilitation medicine.

How can I find cancer rehab if my health care providers don't know where to refer me? Contact the American Academy of PM&R for a referral to a physiatrist (www.aapmr.org). Other cancer rehab experts can be found through their professional associations (physical therapists: www.apta.org; occupational therapists: www.aota.org; speech and language pathologists: www.asha.org). Keep in mind when contacting any of these professional organizations that not all rehabilitation professionals work with cancer survivors. Specifically ask for information about those who do. Also ask your physiatrist or therapist about his/her experience in cancer rehab.

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COMMENTS

I so agree with the need for rehab for cancer survivors. I had to seek this out on my own and the PT had no idea what to do for me. After leukemia and stem cell treatment, I had lost 1/2 my body weight and most of my muscle tone. Four years after treatment, my stamina is still weak, balance very poor, etc. These symptoms were dismissed by my doctor. He only seemed interested in life-threatening symptoms and GVHD symptoms. Quality of life was not his priority. Cancer survivors need to insist on rehab.
- Posted by Kay 2/22/11 3:52 PM

Kudos to you Dr Julie for writing about a topic that is foreign to most cancer survivors. Accepting the 'new normal' is what we think and what we are told. However the 'new normal' is not the same as the normal prior to cancer and it never will be. There is both a physicial and an emotional element to 'normal'. The emotional element has a bearing on the physical and rarely is it given more than token recognition.
- Posted by Jim Yahne 2/22/11 3:54 PM

From my experience with my wife's cancer, most people with cancer die from it in a few short years. The impression is much too optimistic!
- Posted by Jim 2/22/11 4:33 PM

I wish someone had worked with me on cognitive therapy. I've been cancer free for almost ten years, but my family said that chemotherapy changed me. I have had chemo brain since my treatment and thought it would get better. I'm a 60-yr. old wife and mother now (thank God), but I feel like my memory is getting worse and I have to do so many things to remember like details of my daily plans, things people have told me that I need to remember, as well as people's names, new and old. I work as a piano teacher and teach at least 5 hours a day, but I still feel like my brain is often in neutral in some respects. What kind of therapist would deal with this?
- Posted by B.A. Schlegel 2/22/11 5:16 PM

I am a breast cancer survivor of 3 years. After treatment I was told to go and live my life. I became a personal trainer and then a Cancer Exercise Trainer through the American College of Sports Medicine. I have a non-profit called: www.northcountycancerfitness.org in San Diego, CA.
I started it with my business partner, who is a stage lV breast cancer survivor, to tailor a safe exercise program to meet their specific needs. Physical therapists are trained to treat a problem. A Cancer Exercise Trainer is taught to put together a lifestyle of safe and life long exercises and nutrition to reduce a patients risk of recurrence and increase their quality of life.
Thank you, Susan
- Posted by Susan Webster 2/22/11 6:15 PM

I have been on Arimidex for three years since my breast cancer was found and tumor removed.
The last few months I have been in terrible pain in my arms,shoulders, and knees. Ankles ae also involved.
Has anyone else had these symptoms, and what if any relief has been found.
- Posted by Rosemary Roach 2/22/11 7:49 PM

I have Non Hodgkins Lumphoma. I had radiation for one tumor on my forehead in March 2009 and again, radiation in June 2010 for 4 tumors on top of my head. I had a stroke in my eye in February 2009; Avastin injections in my left eye on 4 occasions; now I have developed tinnitus after the second radiation and my ears are ringing 24x7. After my second radiation I went out on disability for 12 weeks for my own rehabilitation and recooperation. Radiation just rings you out. My memory is gone; and I'm just not the same person anymore and I feel like an old lady at 65. I can just about make it through the day at work. What can I do about all of this but pray for miracles?
- Posted by Ileane 2/22/11 8:39 PM

Thank you for this article!! I am a physical therapist that specializes in oncology rehab. Those of us that work in this field have spent many years raising awareness of the necessity of rehab during and following cancer treatment.

Oncology rehab PTs treat the whole patient - at my facility, we start with pre-op visits for all mastectomy patients. Some patients are seen for a few weeks to work on acute rehab needs but most I see throughout chemo, radiation and beyond. We focus on the whole person throughout their cancer journey - not just working on pain and range of motion issues, but also getting patients back to the things they love to do in life in a safe and sustainable way. There is a growing network of oncology rehab PTs around the country, many of whom who have been practicing for many, many years. As the article mentioned, you can go to www.apta.org, you will find a link called "Find A PT" - you can search for PTs in your area that have oncology rehab experience.

I encourage anyone who is at any point in their cancer journey to explore the option of rehab - there is no reason that someone has to accept pain, decreased quality of life, loss of motion, lymphedema, fatigue or any other the other symptoms listed above as a necessary part of their treatment or their life after cancer. Talk to your doctor and actively seek out someone experienced to help!
- Posted by Sharon Leslie, PT, DPT 2/22/11 9:16 PM

Thank you Dr.Silver for your blog. Many of you read about the head and neck radiation side effects that I and Dr. Michael Stubblefield talked about in the latest edition of CURE. Add to the list all the dental problems that plague post radiation survivors. The ACS just received a 5 year grant from the CDC to evaluate, analyze, and create a Survivors National Resource Center. This is in conjunction with George Washington Cancer Institute. This is going to take years, but the ACS is workin on this at the Division level. In, Florida, I chair a survivors workgroup and we are currently surveying survivors at our 2 signature events (Making Strides Against Breast Cancer and Relay For Life. We know so much more must be done to further our cause. We must all ADVOCATE for survivors to be covered by insurance for cancer rehab. We have precious few Physiatrists to help. We will continue to see more on this, but don't be complacent. As has been said, talk to your oncologists. Many of these problems all survivors are suffering from has been called co-morbidity. That is not true in many cases. Volunteer for cancer organizations and get proactive about this issue. Thank you again, Dr.Silver.
- Posted by Sam LaMonte,MD.FACS 2/22/11 9:39 PM

I am so uplifted by this news! My son is 33 and a Stage IV LMS patient currently with the main mass in his sinus. He had 33 radiation treatments to the sinus area and is now doing IPT (insulin potentiation therapy) in Oceanside. Every week he seems a bit weaker and by the time this therapy finishes I expect complete exhaustion. Thank you so much for encouraging participation by the medical community in the therapy after the cure. It's essential! Kudos to Susan Webster and Sharon Leslie for being proactive in life-saving practices after the cure.
- Posted by Ginny Birskovich 2/22/11 10:04 PM

There are a few newer lay cancer rehab programs. I am currently in one that is sponsored by the Lance Armstrong foundation called LiveSTRONG. The small group program at our local YMCA meets twice a week for 90 minutes and runs for 12 weeks. It was obtained by a grant application, and is primarily a physical rehab, concentrating on: balance, muscle tone and cardio, with Yoga and Tai Chi for mind/body integration. There apparently is also a program sponsored by the American Cancer Society with trained leaders.
- Posted by Susan E. Neiger 2/22/11 11:32 PM

There are a few newer lay cancer rehab programs. I am currently in one that is sponsored by the Lance Armstrong foundation called LiveSTRONG. The small group program at our local YMCA meets twice a week for 90 minutes and runs for 12 weeks. It was obtained by a grant application, and is primarily a physical rehab, concentrating on: balance, muscle tone and cardio, with Yoga and Tai Chi for mind/body integration. There apparently is also a program sponsored by the American Cancer Society with trained leaders.
- Posted by Susan E. Neiger Roubal 2/22/11 11:34 PM

So timely ... 6 years since bi-lateral mastectomy followed by chemo which permanently damaged nerves in feet and hands. Thankfully I was seeing a rehab MD for an array of pre-cancer malaise, who has included treatment to compliment my oncologist's ... however, neither caught lymphodema in my torso, appearing as an aging weight matter. Our healthcare system has introduced a very well-marketed lymphodema clinic, where a specialist recommended I ask my oncologist for a prescription for a "lymphodema assessment" ... after just two weeks of therapy, a 50% reduction in what is swelling, not fat! The compression underwear and different bra design makes me feel (and look) like a new person ... not to mention the peace of mind, knowing the sensation of stuffed potatoes under my arms isn't announcing a metatstatic condition! I'm on board with the entire Physical Therapy department, which hopes post-operative therapies will become a "standard of care" for all cancer patients! You are right on track!!!
- Posted by Hannah Reig 2/23/11 12:51 AM

Even breast cancer survivors (warriors?) would benefit big time from such "rehab". After a mastectomy, I lost my ability to go down steps. I lost half of my "ballast" then and didn't regain confidence until a bit of the missing side was restored. During my stay in the hospital I had a stroke that I never had one iota of rehab. Still, two years later, I can't always talk right sometimes and I'm still upset over that but wasn't offered a thing after that since my recovery was amazing.
- Posted by Mary Dixon 2/23/11 1:22 AM

I have asking friends and survivors for a G.I. doctor to help with rehab problems after acute pancreatitus and ovarian cancer, in the St. Louis, Mo. area.
- Posted by Barbara J. Farr 2/23/11 6:21 AM

It appears as though my chemotherapy for breast cancer triggered the development of Parkinson's Disease. My advice to patients and health care professionals (I am a now disabled RN with over 30 years of active experience) is to pay attention and keep notes of complaints of pat ients. Seemingly unrelated things, such as with me severe muscle pain which actually started with my diaphragm and caused severe chest pain and feelings of SOB and frequent bowel obstructions, all seemed to fall together when an observant Neurologist evaluated me for my long-standing peripheral neuropathy. She noted that my gait was "off", I was very unstable, my voice so soft that it is difficult to hear me, and my handwriting is very small. I was referred to a renowned expert of PD and the dx was confirmed. All of my physicians, including my Oncologist, agree that the PD was triggered by my treatments. After my own on-line questioning and networking, I have found that I am not alone with this. Even the judge at my SS disablilty hearing said that she had heard of several cases like mine.
- Posted by Peggy 2/23/11 7:47 AM

Amen....I found an OT immediately to work with me on retention of ROM and strength in arm from which a high grade sarcoma was removed in 07....along with lung cancer.
My stamina and strength were low...fatigue was high. Because I am an Aquatic professional (see www.maryessert.com)
I utilized aquatic therapy /fitness as well and know this works....Encourage all you know to explore this mode of exercise...and others which are comfortable.
We must keep on keeping on....Mary Essert
- Posted by mary essert 2/23/11 8:03 AM

We follow Julie's example at Cancer Athletics in NYC and Princeton NJ. You can build even when there is loss. Even my teammates who are in-patient work on breathing exercise during long drips. They walk the floor, sometimes for miles at a time. Thank you for spreading the word getting healthy.
David
- Posted by David Dorfman 2/23/11 8:59 AM

This is absolutely true. After my first surgery for ovarian cancer 10 years ago I was so weak and depressed that I asked my oncologist for a written order for physical therapy.It was life-saving for me. And it worked for my emotional, psychological,and spiritual as well as physical health. I have had two recurrences and I still go back to the exercises, etc.that I learned 10 years ago as "survivor techniques". As part of my ovarian cancer organization I am now telling my story, along with other ovarian survivors, to medical students. I am going to tell them how important this is. Thank you for featuring it in your magazine.
- Posted by Ruth Gaylord 2/23/11 9:05 AM

I adopted a dog cocker-spaniel at the end part of my chemo who kept me going. He wakes me up in the morning, kissed my bald head and ear. Even if I was achy-breaky from s/e of chemo I had to get up. We go for walks twice a day. He helped me recover and made me stronger everyday. We also met wonderful people in our daily walks.
- Posted by CECILE ROSE-ROMERO 2/23/11 9:58 AM

I had no idea that this kind of rehab was available. I'm weak and would like to know what to do to increase my strength.
- Posted by Tina Feltman 2/23/11 10:47 AM

I'm a 53 yr. old cervical cancer survivor who was never told about cancer rehab. It would have been great for me! I wonder if it's too late now!
- Posted by Laurie S. Rozgonyi 2/23/11 11:49 AM

What a vitally important and informative article. Rehab has truly been the step-child treatment for cancer survivors. There so many that are not aware that there is help available or where to find sources of help. Please continue to publish these articles so that we as survivors can be educated. Thanks to everyone for your valuable contribution.
- Posted by Soonia Charles 2/23/11 12:25 PM

I underwent rehab after breaking my right femur in 2005 and my left one in 2008. These experiences were life changing. I understood the importance of rehabilitation and just what it took, for me, to accomplish the goals established by the PT/OT team as well as my own personal goals. In 2006, just one year after my first injury, I found myself at a local Y. This also changed my life. I did water fitness classes, a great program for anyone with an injury or chronic problem where you do not want to have a heavy impact upon the body. Water allows for bouncy and this creates a safe haven for exercising. I developed early onset arthritis due to my cancer treatments, so again, I was looking for an easy form of exercise that would not add to my pain. After getting into the water program, I slowly stepped up my exercise plan. I attended Silver Sneaker classes and also asked about strength training on some of the fitness machines. I received excellent instruction from the staff (many of whom have degrees in rehab or sports medicine or health administration) and thanks to them, I know do Zumba classes as well. I may not be the one jumping up and down or breaking a sweat, but I love these classes and I'm getting plenty of aerobic activity. I also do a weekly tai chi class at a senior center, one designed for people looking to improve balance and get a good workout. There is no emphasis in my class on technique or style -- we are there to enjoy ourselves and get a workout that helps my blood pressure. (Taking a BP after this class is a real eye opener -- numbers are low since you are so relaxed.)
I would strongly suggest that other cancer survivors look into their local Y or senior center (if they are eligible) for programs designed for health and well being. I did consult with my oncologist first as well as my primary physician, pulmonary specialist and cardiologist. They are all onboard with my exercise program and I have found all of this to be life saving and life affirming. I feel so much better; I'm in less pain (and taking less pain medication -- I also have a pain specialist) and overall -- I am getting better and stronger.
- Posted by Marilyn Wattman-Feldman 2/23/11 1:14 PM

I was diagnosed with Breast Cancer in 2008 and after I had a surgery in a town, with a world renouned center.I felt the treatment I got when I returned home was marginal.They sent me to chemo about a month after surgery and then they sent me to radiation. I felt burned and exhausted.When each of these where going on I asked about rehab and they said we have the occupational gym, mostly for senors.I was not going to let that one lie,so I called the dietician and she said I only work with diabetics.My chemo has left me tired and I have trouble with some chores now.The radiation left me burnt and the surgeries left me with sagging skin.After all of these were finished I was happy, now it was only pill to keep the cancer away. NOT!The cancer put my bones at risk.I have to take that pill. I also have to take a thyroid medicine.(After I asked the doctor every time If I could have a neck cover and he said don't worry!)I guess I didn't kick enough butt.The hospital did say that I was annoying and to never come back unless you are dying.
- Posted by Debbie/az. 2/23/11 2:44 PM

No Doctor told me about any long range side effects of chemo, and I have had a bunch of them. It was up to me to figure out and try to get help. I had chemo related cataracts, a histerectomy from atrophied reproductive organs, osterarthritis (knee surgery to take out broken bits and pieces)and now in a week gallbladder surgery. These were not all, just the most drastic. Cancer patients need to be told of possible effects that can occur 5 or more years later. Since chemo there has been one thing right after another. I have fought to get my health back and there always seems to be something else. Is bad health going to be the new norm for the rest of my life? We need more information!
- Posted by Susn Thigpen 2/23/11 3:50 PM

I have read and followed Dr. Silver's book: After Cancer Treatment, Heal Faster, Better, Stronger and it was priceless in confirming all the things I knew I must do. First there is surviving, and then there is thriving. Setting realistic goals, recognizing that some things will never be the same and keeping the spirit as you take one day at a time are the key elements to being a breast cancer thriver. CURE TODAY has been one of my favorite on-line support sites and I always look forward to and enjoy each new issue!
- Posted by Mary Hufnagel 2/23/11 3:59 PM

Dear Rosemary Roach, i have been on Arimidex for a little over a month and have both the shoulder and knee pain that you speak of. My onocologist tells me that these symptoms will go away in time. I have been working with the Wii Fit Plus and not overdoing things and find it helps to get exercise in your day everyday. Just do what you can and have some fun while getting fit. I had breast cancer and had a double masectomy. If you haven't already had a Dexa scan which measures bone density, you might want to get one because Arimidex can deplete your bones of calcium. My doc put me on Calicium and vitamin D as well. when my Dexa scan said i was at risk i was also put on the Fosomax as well to help replenish my calcium. I think rehabilation for cancer patients is a wonderful thing much needed!
- Posted by Diane 2/23/11 10:30 PM

Thank you for bringing this to the forefront. My husband had laryngeal cancer and a second tumor at the base of his tongue within 3 years. While he received speech therapy after his laryngectomy, he was never offered any physical therapy to help with the loss of muscle tone, fatigue and endurance while going through a year of chemotherapy and radiation. To his credit, he did everything he wanted to do and felt like doing on the "good day". I hope that cancer rehab will become a part of the regular treatments for everyone!
- Posted by Cheryl 2/24/11 10:10 AM

I relate to Cecile, who has a cocker spaniel! I already had an adopted cocker spaniel who liked to go running with me. Right before my second mastectomy (following Stage 2 breast cancer), he ruptured a disc in his back, had emergency surgery, and was temporarily paralyzed. He has now fully recovered, though it took months. In the meantime, I slowly recovered from my surgery. He and I are finally able to go running together again. He inspires me. He never lets anything get him down. He's also accepting of my worries and fears. I have a sister who totally pooh-poohs the idea of my cancer recurring and makes fun of my chemo brain, a condition she thinks is made up by cancer patients who want attention. Besides fearing recurrence for myself, I have the extra burden of worrying about her, since she's my identical twin and she doesn't believe in cancer screening, whether it's mammograms, pap smears, or colonoscopies (we're both over 50). My dog accepts me, doesn't mind if I worry about these things, and never makes fun of me for having had cancer. Plus, he provides the best running partner I could ever find. When I get out my running shoes, he does his "happy dance"! It's motivating to get out and run with him and see him so joyful and happy.
- Posted by Deborah 2/25/11 12:21 PM

This is a great article to educate cancer survivors and people in active treatment of what is available.
However, you have left out Massage as a rehab. I know this is not intentional or an over site as very few people know about us. I am a board certified Holistic Nurse Massage practitioner and have helped hundreds of women in the past 22 years pre and post the Chemo, radiation, and surgeries. I refer my clients to yoga, exercise therapists who all specialize in Cancer rehab as well. I was an Oncology nurse for 20 tears before hospital burn out and found Massage Therapy to continue my work. Please visit my web site, Cherylchapman.com.
There are a group of well trained massage therapists across the country whose specialty is Oncology and Mastectomy Massage.
To see this, please go to the s4om (Society for Oncology Massage) web site. We are a group of massage therapists like myself who organized it for the specific reason of providing emotional and physical support for people living with cancer.
- Posted by Cheryl Chapman RN,HN-BC.NCTMB.NJSC 2/25/11 1:27 PM

I am 2 years out of my last chemo for stage IV ovarian cancer, I was going to Silver Sneakers before my diagnosis and a month after my last chemo, with no advice from my oncologist or surgeon, I went back to Silver Sneakers! It's a wonderful low impact aerobics class for 50+ Many gyms offer it and many HMO's give free memberships to it. My only risidual side effects from chemo was my stamina and muscle loss. It improved quickly and I'm almost 100% again.It's a co-ed class!
- Posted by Elaine Reagan 2/27/11 3:27 PM

I'm a 23-year stage 3 breast cancer survivor -- b/c my tumor was the size of a small apple, I had extensive surgery, a year of chemo, 6 weeks of radiation, then six weeks later a recurrence followed by more surgery -- 6 surgeries in all in a two year period. It was all early onset at age 38, so I was thrown into early menopause. Never having had a day of poor sleep pre-cancer, all of this treatment, side effects and menopause left me with extreme insomnia. Also, within a year post-treatment I couldn't lift my head from my pillow due to premature degenerative disc disease. During my modified radical mastectomy, the long thoracic nerve was severed in my left arm. Along with all of it came chronic pain, muscle/joint dysfunction, chronic fatigue and chemo brain. I became addicted to prescription sleep meds. Yet with all of that I had a minimal amount of post treatment intervention that I didn't look very hard to find. Desperate to kick sleep meds, I found my own way to weekly therapeutic massage, which in time broke the habit cycle. My massage therapist lead me to myofascial trigger point therapy (MTPT), which, together with chiropractic care, gave me back some semblance of a normal-functioning life. Unfortunately, health insurance is woefully lacking in coverage for MTPT, and I haven't been able to have it since moving to NY from VA 11 years ago. Acupuncture has been helpful with chronic pain and muscle dysfunction, and I was fortunate to get it free through a grant at a local cancer center. Over these more than two decades of seeking help in my struggle to function, I've also been through several courses of mainstream physical therapy at different clinics in different states. They helped little if at all. It wasn't until I found a doctor of physical therapy who REALLY LISTENED AND HEARD ME tell the specifics of my experience that a need-specific program was developed for me that has my neck moving pretty close to normally again. I'm back to severe sleep difficulties, unable again to sleep without prescription meds, and feel the only way out is intense drug rehab at a sleep center such as Deepak Chopra's, just as a drug addict would go to a re-hab center. But such sleep drug re-hab paid for by health insurance doesn't exist that I know of. But I'm always looking for and trying now sleep aids and behavior modification methods, and WILL find a way to kick this trap as I have before with therapeutic massage, which I still get regularly and couldn't imagine living without. Every form of help I've found has been with extreme effort on my own part to find it, and then the gift of it from generous healers who really wanted to help me get better when I ran out of money. My single strongest message is that we must all be our own best advocates and not rely on our oncologists to point us in the direction of help. Ask. Ask. Ask. Demand. Demand. Demand. And do not settle. If I could pick only two modalities to recommend, I'd say I learned more about the functioning and re-habbing of my body from my myofascial trigger point therapist than anyone else, and I have derived the most ongoing general benefit from therapeutic massage than anything other therapy. I wish help was easier to find and that post-treatment care was a regular part of all cancer treatment, but until it is, just know help IS out there. This article and even voices in this blog offer great resources worth researching. I read this entire blog and feel so much compassion for all who suffer without the help they need.
- Posted by Mary Ishmael 2/27/11 9:07 PM

I have actually been working on this on my own. I didn't want the new normal. I'm 3 1/2 years out. I have gone back to school. Mostly because I have done manual labor my whole life. (I'm 55) The school work has greatly improved my loss of words, and thinking process. I'm not 100% as of yet, but there is great improvement. I also do Krill oil to help repair the myelin loss. The muscle loss and fatigue are the hardest for me to overcome, for Due to depression it is very hard to get out and walk, lift weights, ect. I know this will also help the depression, so this is an area where I need to push myself the hardest. One of these days I will conquer this too. Just need to get to the mind set, for I do believe I can be the person that I once was.
- Posted by Kandise 3/3/11 11:39 AM

So glad this is being said so clearly and so strongly. I will do what I can to spread the intelligence and intention in these words--to my family who has struggled, and to friends still struggling. Thanks Dr. Julie!
- Posted by Mary Ellen 3/22/11 3:11 PM

I just want to say that this magazine has helped me more than anything else. I was diagnosed with Breast Cancer May 2010. During the first few months of tests, waiting for results, surgeries, and more tests, was difficult but I knew that it was all necessary. I had Stage 1 Node Neg. so I was very positive about surviving. I really never think the other way. I did have complications from the Port-O-Cath and it had to be removed before my last round of chemo. Fatigue and the Chemo-Brain is probably the worst side affect I am dealing with now. This is something I did not realize was going to get worse. I was finished with Chemo and 7 weeks of Radiation in November 2010. It is now April 2011 and It is not getting better. In fact different times during the day or depending on what I am doing or what the stress level is it can be so much worse. Family is not always supportive. I am a very honest person and I want to know if anyone else has Family that does not get it? My family at the begining was worried but that did not last. My husband was really scared in the begining but really no help at all. He acted concerned to other people and now that treatment is finished he wants me back to normal.He interrupts when I am talking because I have trouble finding the right words. Then he gets mad because I am frustrated. I can tell he really does not want to listen to anything I have to say unless I am smiling and happy. I am treated worse now than ever before. There have been alot of other family issues to deal with over the last year,(really the last 10 years) way to many to say right now. The best thing is my Grandaughter. She was born a few months before I was diagnosed and has been the best medicine. My boys don't understand and I feel like they only cared if I was going to die. But now they just tell me I am crazy. I know they all want me back to normal but that will never be. I do not think the same way and I am so tired of apologizing for the way I am now. Through all of this I had my Sister and some good friends to listen to me and help me know I am normal and not crazy. I don't know what I would have done without them. The articles about Chemo-Brain also help me know that all of the things that are happening to me are from the treatment. This is something that I wish the oncologists would talk about and not just say don't worry it gets better.I can deal with anything as long as I have information, which Care magazine gives all of us surviving Cancer and all that goes along with it. I Thank You for that.
Sincerely Leslie Berens 4/4/2011
- Posted by Leslie Berens 4/5/11 12:26 AM

KUDOS!!!!! Rehab for cancer survivors. I'am a registered nurse and promoted rehab for my husband after each and every bout with cancer. Our physical therapist was excellent. He not only help increase my husband's endurance and strength but bolstered his emotional spirit.
As team players my husband and I pursued the quest for REHAB. His main oncologist never broached the topic. Only one physician, a surgeon, recommended a course of physical therapy.
I cannot say enough about the importance of REHAB for cancer survivors.
- Posted by Joyce Hutchinson 5/11/11 12:22 PM

I always call chemo the "gift that keeps on giving." And NOT in a good way . I am a 9 year breast cancer survivor, treated with lumpectomy with axillary disection with positive nodes. aggressive chemo for 6 months with ACT. Then, 6 weeks of radiation on three fields. I had every side effect known to man ( and even some not known) starting with the very first infusion.

I have had several surgeries and hospitalizations, mostly involving my GI tract; had a foot of my large intestine removed on an emergency basis back in May '09.

But, the thing that has caused me the most problems and permanent disability as an RN, is that the chemo triggered Parkinson's Disease. To top it off, since I don't have "tremor dominant disease", the current meds are not felt to be effective for me. The risk of severe side effects isn't worth putting me on them. So, I have pain medications for the severe muscle pain (yes, that Is part of Parkinson's) and now on Xanex for the mild anxiety that I have started to develop, also part of the disease.

The judge at Social Security told me (after she granted the disability) that she has personally heard several other cases that are similar to mine.

The longer we surviors live post treatment, the more things our doctors will learn about what happens.
- Posted by Peggy 1/4/12 8:21 AM

Oh how I wish I had access to this article when I finished my chemotherapy. In April, 2011, eleven years and one month to the the day from my first diagnosis, I was again diagnosed with Stage II breast cancer which was aggressive. After bilateral mastectomies, TRAM flap reconstruction and poor healing due to previous radiation, I finally started chemotherapy. With the first treatment my WBC and neutrophil count dropped to near zero and was at zero after my second treatment. After 2 rounds of Taxotere (treatment #4 and 5) the skin reactions I had were horrific to me. My oncologist recommended acupuncture to help me cope and get through and I did have several sessions but I didn't feel like I was getting anywhere. I was fatigued, weak, trying to be brave and hiding my fear and frustration. To make matters worse, I developed pain in both my upper arms. The perfect range of motion I had was gone. Lifting, reaching, just putting a bra on was excruciating. Using a pencil or a keyboard caused a popping sound in my upper arms. I was told to exercise. Fortunately, I had a routine check-up with my rheumatologist during that time. I mentioned to him that I had this wierd upper arm pain and with it a tingling in my hands. With one finger he was able to reproduce the pain. Turns out some chemo agents and antibiotics I took due to the low cell counts, can cause my symptoms. He prescribed PT and told me it should go away in 6 mo....and it has.
I returned to work 6 weeks after my last chemo. I work 3 days a week and I'm on the move every minute I'm at work. It's been a long, hard road. In April of 2012, one year after my diagnosis, I walked a 5K for Pancreatic Cancer Research. I'm better, I still have some skin reactions that have lingered, but I so wish there had been help for me, more than being told to exercise and see an acupuncturist. I feel that had I not had a random appointment with a rheumatologist, I would still be trying to figure out what was wrong with me. For the record, I am a nurse, actively working for almost 40 years and my area of experience is Cardiac Rehab. If anyone knows the advantages of rehab, I do.
My plan now is to discuss a true Cancer Rehab program with my oncologist, physical therapy dept and administration at my hospital. We are a small rural hospital that serves a good number of people and we have a very busy cancer center. It's time to make rehab a part of our hospital community. Thank you for the work you do.
- Posted by Laura Williams 6/23/12 5:26 PM

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