I NEED A PATIENT ADVOCATE

"Within five years most informed consumers will be asking, 'So who's your Patient Advocate'? "
-Ken Schueler

When do I need a Patient Advocate?
Examples of actual patients*:

"My father has a Glioblastoma Multiforme brain tumor. He had surgery and then radiation plus a chemo drug, Temodar. You’ve mentioned that he might benefit from a new vaccine trial if his tumor is positive for EGFRvIII . How do I find out if my Dad is eligible ? Where is the trial ? How long would he have to be there ? Are there any other treatments ?"
* * * * * *
"My wife was suffering from a drooping right eyelid, swallowing difficulty and softening of her voice. After CT and MRI scans they found a mass pressing against her right internal carotid artery at the skull base. A needle biopsy indicated it was either a schwannoma or a paraganglioma, but there was not enough tissue to clarify which. We consulted with three Head-and-Neck surgeons and they recommended immediate surgery, cracking open the mandible(one said neck access might be possible), with the risk that my wife could lose her voice. Since my wife teaches singing, she is afraid of surgery. You suggested that we consider proton radiation because it has very little exit dose minimizing damage to nerves and other surrounding tissues. What are the next steps to learn more about this treatment, and if it would be an effective and safer choice for my wife ?"
* * * * * *
"I’ve had chronic knee pain for six years and even with Methadone and Neurontin my pain is 5-6 out of 10.They say I have CRPS(Complex Regional Pain Syndrome ). This all started with ACL surgery on my knee. After that they tried a lumbar block, epidural steroid injection, arthroscopic surgery to repair graft and remove scar tissue, physical therapy, antibiotics for possible infection, freezing the suspected neuromas , severing the saphenous nerve, and multiple drugs- nothing has relieved my pain. A spinal cord stimulator or intrathecal pump were recommended, but I don’t want surgical implants. You suggested that I speak with a pain management doctor about a five-day low-dose ketamine infusion with monthly shots, to reduce my needing opioid drugs. I’d like to talk with a pain patient like me who has had this treatment. What’s the success of this treatment?"
* * * * * *
"I have metastatic breast cancer and have had three lines of chemotherapy drugs plus Zometa for my bones. You’ve indicated that if I was willing to travel to Europe I might be helped by a dendritic cell vaccine made from my own blood plus some of my tumor tissue which is still frozen. I’d like to talk with other patients who have tried this. How long is the treatment and what is the rate of complete, partial or stable responses? If I do this will I become ineligible for any new trials in the US ?"
* * * * * *
"Our Mom is being treated for bladder cancer at a wonderful clinic 15 minutes from her house. Now her insurance company has said they're not renewing the contract with the local cancer clinic and our Mom is going to have to travel 1-1/2 hours each way to another cancer center. She can't possibly make that long car trip every week. What can we do? Please help!"
* * * * * *
"I have recurrent metastatic breast cancer. I don't think my oncologist would let me die but I'm afraid what will happen if this latest treatment doesn't work. Where can I get a second opinion? Will my doctor be offended?"
* * * * * *
"I have had ovarian cancer for eight years and have been on almost every chemo drug as well as a stem cell transplant. Are there any clinical trials for non-toxic treatments which I can try?"
* * * * * *
"We live in Colorado. My thirteen year-old son is bipolar but is not doing very well. Ever since Columbine it's been impossible to get in to see an adolescent psychiatrist in our area. Where do we find help?"
* * * * * *
"My Mom is in a community hospital ICU. She has a cerebral aneurysm. They don't do coil embolization in this hospital, so they're proposing neurosurgery. Where's the closest major hospital where I can bring my Mom where they do interventional radiology for coil embolization, and how do I medivac her?"
* * * * * *
"My wife is being treated for lung cancer. She's tired all the time, and I don't understand why we have to wait until her hemoglobin get's so low before the insurance company will pay for Procrit. What can we do?"
* * * * * *
"I live in South Africa. I have arachnoiditis, and my legs feel on fire, that I'm walking on glass. Few doctors here know about it or how to treat this. Where can I obtain information about the latest treatments for this? Who are the experts?"
* * * * * *
"I've tried so many medications for my migraines-Imitrex, Maxalt, Zomig-but nothing seems to prevent or control the headaches. Is there anyone you can refer me to who uses a naturopathic approach to migraines?"
* * * * * *
"I recently discovered I have hepatitis C from when I lived overseas. I don't have any symptoms. I'm a widow and I'm afraid to tell my new boyfriend. Where can I find out about reducing the risks for sexual transmission? One doctor told me to use nonoxynol-9 spermicide, but others have said that doesn't work."
* * * * * *
"Since our Mom died two years ago, our Dad seems to be losing his memory and becoming more agitated. He denies he's having any problems. My sister and I are so worried about him, but we don't know who to ask for help because we live far away."
* * * * * *
"My daughter pulls her hair out from her head whenever she's in her bedroom. I read on the internet that this is called trichotillomania, but who treats this, where do we go?"
* * * * * *
"My husband had Lyme disease with the typical bulls-eye rash. He was treated with antibiotics by his local doctor, and seemed OK. But now he has all these aches and fatigue, and it seems to have come back. Where is the nearest Lyme expert we can go to help my husband?"
* * * * * *
"I have cervical cord compression in my spine. One neurosurgeon wants to do a combined anterior (front) and posterior(back) surgery, while an orthopedic surgeon I saw said that the front approach is entirely sufficient. I'm having trouble making a decision- I need more information."
* * * * * *
"My wife was just diagnosed with bullous keratopathy, a blistering of her cornea. Apparently this kind of surgery is very specialized. Who's the best eye surgeon for her?"
* * * * * *
"My adult daughter is addicted and is forging prescriptions. I want her to be treated but I don't know where to turn because she failed a previous treatment."
* * * * * *
"I've got Meniere's disease, and it's very debilitating- I get vertigo and ringing in my ears and then I can't work. Western medicine hasn't helped. Are there any alternative treatments for this condition ?"
* * * * * *
"I've been told my sputum tested positive for mycobacterium avium complex(MAI) and M. Kansasii, confirmed by CT. The pulmonologist wants to treat me with Isonizaid, Rifampin and Ethambutol. It seems the side effects of these drugs are horrible-nausea, vomiting, headache, fever, diarrhea . As I have no symptoms, is there another way to manage this? Can you recommend another pulmonologist for a second opinion?"
* * * * * *
"My wife has been on prednisone for years for an autoimmune disease. She gets infections all the time and has had stress fractures in her spine and ribs and has been to the ER four times this year. We need a different approach-who can you recommend?"
* * * * * *
"I've had two spinal fusions following car accidents. The only therapy that seems to give me relief from muscle spasms and pain is acupuncture, but my insurance company wouldn't pay for more than 15 sessions; even though they'll pay for powerful pain killers which just make me constipated. What can I do to get my insurance company to cover this? "
* * * * * *
"My wife and I are on Medicare and we can't afford to purchase all the medications we both need each month, so we've been skipping the arthritis drug, and just taking the critical ones like for blood pressure. I've read other seniors get their meds from Canada, but we don't have a computer so I don't know which companies are reliable. Can you recommend any reputable companies, and by the way is this legal?"
* * * * * *
"I'm being treated for Hodgkin's lymphoma. There seems to be a debate about taking immune supplements during chemotherapy. My oncologist is very good, but is not really knowledgeable about alternative medicine. Who can I talk to who is professionally trained about nutritional supplements during chemo?"
* * * * * *
"My sister gets burning pain in her feet which sometimes turn blue or black. Her doctors at the local clinic have said maybe it's Raynaud's syndrome, or maybe peripheral vascular disease, or gout or arthritis. But no one knows for sure and they're just giving her MS Contin for pain. Where can I take my sister to get an accurate diagnosis and treatment? "
* * * * * *
"My grandson had rectal cancer and now he has lesions in the liver. One of our neighbors who had cancer told us about different treatments for the liver like chemoembolization, radio-frequency ablation, radioactive glass beads, and Cyberknife, but we don't know the best hospitals for these. What's the quickest way we can help our grandson find the right treatment and hospital?"
* * * * * *
"My wife has multiple sclerosis. She's on interferon medication, but there are plenty of side effects. There must be something else we can do. I've been reading about the SWANK diet, and about avoiding aspartame, and about her taking supplements like gamma-linolenic acid. Can you refer us to a licensed nutritionist near us who has experience with MS ? "
* * * * * *

*In the above case summaries patient permission was granted or minor details changed to protect privacy.

 

   
  All Contents Copyright © 2000-2007 HKS Patient Advocates