Happy New Year! Pat and I are returning from warm, sunny Florida to cold, snowy Wisconsin tonight. Our flight is scheduled to arrive back in the Twin Cities about midnight. Then an one hour drive and we should be back home in Wisconsin about 2 am New Year's Day. Pat's health has held up surprisingly well on the trip, although I noticed he did have trouble signing the credit card slip at lunch. He says it is from the chemo. I'm not sure it doesn't have something to do with the size of the bill anytime we eat near the airport! I do know that his hands and feet have been cramping lately. He also experiences what he calls the "chemo flu", most likely caused by his low white blood count. Friends at home called and said that we got
12" of snow yesterday. Glad we bought that used snow blower in October!
Feel good and keep smiling! Pattie
Wednesday, December 31, 2008
Tuesday, December 30, 2008
New Prostate Cancer Treatment Approved by FDA
Here is an interesting development for patients with prostate cancer:
Ferring Pharmaceuticals is having a good month and have gotten two significant Holiday gifts, as do patients with prostate cancer.
Last week, the CHMP announced approval of Ferring Pharmaceutical's new treatment for prostate cancer, Degelarix. Today, the FDA followed suit and approved the first treatment for prostate cancer in many years. This follows some notable efforts by Dendreonwith Provenge and Abbottwith Xinlay to gain approval but not achieve it. Provenge is a biologic immunotherapy while Xinlay was an oral agent of a different class from the injectable Degarelix.
Remarkably, as of this writing, the FDA has a press release out about the approval, but the company does not. Companies can coordinate approval announcements with the FDA, you know. Nor does Ferring issue press releases by RSS Feed. They may be behind in communications, but they are doing something right.
In the category of prostate cancer treatment, there has been no small amount of drama surrounding the Dendreon decision by the FDA. In that case, the FDA's Advisory Committee voted in favor of 17-0 in favor of safety and 13-4 in favor of efficacy, but the agency issued a Complete Response Letter in early May 2007 to the company asking for more studies. Prostate cancer activists have been protesting the FDA's decision since and you would have to be living under a rock not to have heard any of the many missives from the activists.
According to the FDA press release about the new approval, Degarelix is intended to treat patients who have advanced prostate cancer. The compound is part of a class called gonadrotropin releasing hormone (GmRH) receptor inhibitors, which slow the grown and progression of prostate cancer through the suppression of testosterone. While many hormonal treatments may cause an initial surge in testosterone production after injection, the newly approved compound does not have that effect.
This approval is not likely to have any effect on the continuing saga of the efforts to win approval for Provenge. Nor is it likely to assuage the desire of prostate cancer activists who are seeking an immunotherapy that has a far different non-hormonal approach to the treatment of prostate cancer.
Interesting, but how disappointing that the drug approval process can be so political and subjective. It is exciting that hormonal treatments for prostate cancer continue to advance and show such promise!
Feel good and keep smiling! Pat & Pattie
Ferring Pharmaceuticals is having a good month and have gotten two significant Holiday gifts, as do patients with prostate cancer.
Last week, the CHMP announced approval of Ferring Pharmaceutical's new treatment for prostate cancer, Degelarix. Today, the FDA followed suit and approved the first treatment for prostate cancer in many years. This follows some notable efforts by Dendreonwith Provenge and Abbottwith Xinlay to gain approval but not achieve it. Provenge is a biologic immunotherapy while Xinlay was an oral agent of a different class from the injectable Degarelix.
Remarkably, as of this writing, the FDA has a press release out about the approval, but the company does not. Companies can coordinate approval announcements with the FDA, you know. Nor does Ferring issue press releases by RSS Feed. They may be behind in communications, but they are doing something right.
In the category of prostate cancer treatment, there has been no small amount of drama surrounding the Dendreon decision by the FDA. In that case, the FDA's Advisory Committee voted in favor of 17-0 in favor of safety and 13-4 in favor of efficacy, but the agency issued a Complete Response Letter in early May 2007 to the company asking for more studies. Prostate cancer activists have been protesting the FDA's decision since and you would have to be living under a rock not to have heard any of the many missives from the activists.
According to the FDA press release about the new approval, Degarelix is intended to treat patients who have advanced prostate cancer. The compound is part of a class called gonadrotropin releasing hormone (GmRH) receptor inhibitors, which slow the grown and progression of prostate cancer through the suppression of testosterone. While many hormonal treatments may cause an initial surge in testosterone production after injection, the newly approved compound does not have that effect.
This approval is not likely to have any effect on the continuing saga of the efforts to win approval for Provenge. Nor is it likely to assuage the desire of prostate cancer activists who are seeking an immunotherapy that has a far different non-hormonal approach to the treatment of prostate cancer.
Interesting, but how disappointing that the drug approval process can be so political and subjective. It is exciting that hormonal treatments for prostate cancer continue to advance and show such promise!
Feel good and keep smiling! Pat & Pattie
Monday, December 29, 2008
Chemo Coach Helps Cancer Patients
Know someone who is about to start chemotherapy? Have them go to www.chemocoach.com and register for their e-newsletter. Lots of useful information to be taken with (excuse the pun!) a grain of salt, since the site is commercially sponsored by Amgen. Amgen is a large pharmaceutical company that manufactures Neupren and Neulasta, drugs designed to increase your body's production of red and white blood cells during chemo. Still, a worthwhile resource. The latest article lists several ways to improve a chemotherapy patent's quality of life.
Feel good and keep smiling! Pat & Pattie
Feel good and keep smiling! Pat & Pattie
Sunday, December 28, 2008
My First Visit To Mayo Clinic In Jacksonville, Florida
Pattie and I visited Mayo Clinic's Jacksonville, Florida Campus today. Very impressive! The clinic and hospital are located in a private, tropical setting just outside the city. The weather here continues to be perfect. 81 degrees and not a cloud in the sky. It will be difficult to return home to our Midwestern winter! But I'm not sure we would like to live here year 'round. It just doesn't feel like home.
Feel good and keep smiling! Pat & Pattie
Feel good and keep smiling! Pat & Pattie
Saturday, December 27, 2008
Your Kidneys Are Important!
Pattie and I spent the day in Orlando, Florida at the Champs Sports Bowl watching the University of Wisconsin Play Florida State. Pattie's sister, Mary, and her family attended the game with us. Mary operates several dialysis units near Tampa. She invited one of her patients, John, to join us at the game. John has been on dialysis for almost 18 years! He has scars on his chest, neck, and up and down his arms from years of treatment. I had lots of questions for him. Multiple myeloma patients like myself often experience kidney failure. As calcium is leached from your bones by the myeloma it begins to clog up the kidneys. Dialysis is a common result. John is surprisingly resilient and upbeat. He is hoping for a kidney transplant soon. That could be me someday. I try and do everything that I can to keep my kidneys healthy and functioning efficiently. I drink lots of water, eat my vegies and make sure that I get enough protein to help my kidneys repair themselves. But for today, my only pain comes from the beating my beloved University of Wisconsin Badgers experienced at the hands of Florida State's football team. You would think that with all of the challenges I have faced recently, something as insignificant as my Alma matter losing a football game wouldn't matter much anymore. Wrong! My emotional pain tonight is every bit as real as the physical discomfort I feel from the damage to my bones caused by my myeloma. I'm sure I will feel better in a few days. Heck, I'm starting to feel better already!
Feel good and keep smiling! Pat
Feel good and keep smiling! Pat
Friday, December 26, 2008
Reflections From Sunny Florida
I hope everyone had an uneventful and healthy Christmas! Pattie and I didn't post yesterday. We were flying down to visit her family in Tampa, Florida. When we left it was 5 degrees in the Twin Cities and it was 82 degrees when we arrived here yesterday afternoon. We will be visiting several health care facilities while we are here in Florida, including Mayo Clinic in Jacksonville. I have written about my bone pain, resulting from damage done by my multiple myeloma before it was diagnosed and controlled last year. The "holes in my bones" are partially repaired. But I have been experiencing more bone pain than in the recent past, especially with the onset of cold weather this fall. One of the reasons I was excited about visiting Florida was to test and see if warmer weather helped me feel better. It does! There is a quantifiable improvement in my flexibility and ability to move and exercise with less pain. The improvement was almost instantaneous. I have already been able to cut back my pain meds. Not sure improvement is reason enough to relocate, but we are considering it. I will post more about this later in my trip.
Warm or not, I hope all of you feel good and keep smiling! Pat
Warm or not, I hope all of you feel good and keep smiling! Pat
Tuesday, December 23, 2008
Chronic Lymphocytic Leukemia
In many ways, Chronic Lymphocytic Leukemia is similar to Multiple Myeloma. Both often respond to treatment but neither one is curable. I found this report by Dr. Mary E. Dominiecki from the ASH conference earlier this month enlightening. Dr. Dominiecki is the Medical Director of CancerEductation.com. Here is an excerpt from her report:
I attended an educational session on Chronic Lymphoctyic Leukemia (CLL) today. Key points from this session-
Some patients diagnosed with CLL require immediate treatment whereas others live for many years without requiring treatment.
Several biomarkers have been identified but the role of many of these markers is still unclear.
The data at present do not provide a clear indication of whether patients with specific biomarkers should be treated differently.
The only possible exception is patients who have the 17p deletion. These patients should be treated with agents that work independently of p53.
About 25% of patients with CLL have autoimmune complications predominantly affecting blood cells, with autoimmune hemolytic anemia (AHA) being the most common. AHA is a poor prognostic marker in patients with CLL.
There are many good treatments available but CLL is still not curable so new agents are needed.
There are several new agents in development including
Antibodies - lumiliximab (antibody to CD23), ofatumumab (antibody to CD20)
These antibodies bind to specific cells within the body and target them for destruction.
Bcl-2 family member inhibitors - oblimersen, obatoclax, ABT-263
Bcl-2 family members are involved in the process that tells cells when to die.
Cyclin-dependent kinase inhibitors (CDK inhibitors) - flavopiridol, SNS-032
CDKs are involved in the normal cycling of cells. When you inhibit CDK, the cell dies.
Read more about CLL and other blood and marrow cancers in Dr. Dominiecki's in depth reports from ASH at http://www.cancereducation.com/. Simply register, pick a password and prepare to be overwhelmed with information. Some technical, some not.
Feel good and keep smiling! Pat
I attended an educational session on Chronic Lymphoctyic Leukemia (CLL) today. Key points from this session-
Some patients diagnosed with CLL require immediate treatment whereas others live for many years without requiring treatment.
Several biomarkers have been identified but the role of many of these markers is still unclear.
The data at present do not provide a clear indication of whether patients with specific biomarkers should be treated differently.
The only possible exception is patients who have the 17p deletion. These patients should be treated with agents that work independently of p53.
About 25% of patients with CLL have autoimmune complications predominantly affecting blood cells, with autoimmune hemolytic anemia (AHA) being the most common. AHA is a poor prognostic marker in patients with CLL.
There are many good treatments available but CLL is still not curable so new agents are needed.
There are several new agents in development including
Antibodies - lumiliximab (antibody to CD23), ofatumumab (antibody to CD20)
These antibodies bind to specific cells within the body and target them for destruction.
Bcl-2 family member inhibitors - oblimersen, obatoclax, ABT-263
Bcl-2 family members are involved in the process that tells cells when to die.
Cyclin-dependent kinase inhibitors (CDK inhibitors) - flavopiridol, SNS-032
CDKs are involved in the normal cycling of cells. When you inhibit CDK, the cell dies.
Read more about CLL and other blood and marrow cancers in Dr. Dominiecki's in depth reports from ASH at http://www.cancereducation.com/. Simply register, pick a password and prepare to be overwhelmed with information. Some technical, some not.
Feel good and keep smiling! Pat
Monday, December 22, 2008
Mesothelioma Cancer- Could I Be at Risk? (Part 3)
Because there is no known cure for this type of cancer, treatment is merely a temporary means of controlling pain and symptoms and maintaining the patients quality of life. Mesothelioma is very aggressive, and 99% of sufferers will die within 2 years of their initial diagnosis. It is important that people understand the causes of mesothelioma cancer and how to prevent them, as well as what risk factors, such as cigarette smoking or exposure to other carcinogens, can increase your risk of developing this particular cancer. For more information about mesothelioma cancer, please visit http://www.mesothelioma.com/.
Feel good and keep smiling! Pat & Pattie
Feel good and keep smiling! Pat & Pattie
Sunday, December 21, 2008
Mesothelioma Cancer- Could I Be at Risk? (Part 2)
Here is part 2 of the 3 part article about Mesothelioma:
Mesothelioma currently has one confirmed cause- previous exposure to asbestos, a naturally occurring toxin that is found in a vast array of products, including attic insulation and roofing tiles. Asbestos products are only dangerous if they are are damaged and the asbestos fibers within become friable and potentially airborne. If inhaled or ingested by humans, airborne asbestos fibers (which are extremely tiny and have a claw-like architecture) can lodge themselves within the mesothelium of the lungs, abdomen and heart and remain there for up to 50 years before an affected individual may begin to suffer from common mesothelioma symptoms, such as breathing difficulties or chest pain. A diagnosis of mesothelioma (often referred to as asbestos cancer) is a very devastating reality. The majority of newly-diagnosed patients are between the ages of 55 and 75, as mesothelioma has a latency period of about 20 to 30 years or more. Upon diagnosis, most patients begin treatment, which can include surgery, chemotherapy or radiation.
More about treatment likely prognosis of a mesothelioma diagnosis tomorrow.
Feel good and keep smiling! Pat & Pattie
Mesothelioma currently has one confirmed cause- previous exposure to asbestos, a naturally occurring toxin that is found in a vast array of products, including attic insulation and roofing tiles. Asbestos products are only dangerous if they are are damaged and the asbestos fibers within become friable and potentially airborne. If inhaled or ingested by humans, airborne asbestos fibers (which are extremely tiny and have a claw-like architecture) can lodge themselves within the mesothelium of the lungs, abdomen and heart and remain there for up to 50 years before an affected individual may begin to suffer from common mesothelioma symptoms, such as breathing difficulties or chest pain. A diagnosis of mesothelioma (often referred to as asbestos cancer) is a very devastating reality. The majority of newly-diagnosed patients are between the ages of 55 and 75, as mesothelioma has a latency period of about 20 to 30 years or more. Upon diagnosis, most patients begin treatment, which can include surgery, chemotherapy or radiation.
More about treatment likely prognosis of a mesothelioma diagnosis tomorrow.
Feel good and keep smiling! Pat & Pattie
Saturday, December 20, 2008
Mesothelioma Cancer- Could I be at Risk? (Part One)
Jennifer Miller with Mesothelioma.com asked me to post this article on behalf of Mesothelioma.Com, a leading Internet resource for asbestos and mesothelioma information. The group is committed to increasing awareness of this fatal form of cancer. Here is the first part of the article:
There are a number of different types of cancer, yet we tend to hear about a limited few: breast cancer, colon cancer and prostate cancer are examples. However, there is a type of cancer that is just as devastating- if not more so- than all of the familiar cancer's combined, yet we rarely hear about it. This type of cancer is known as mesothelioma, and if you are unfamiliar with its causes and treatment methods, you may be at a serious disadvantage. There are three varieties of mesothelioma cancer: pleural mesothelioma, the most commonly diagnosed form that occurs within the lung cavity; peritoneal mesothelioma, which manifests in the abdominal cavity and pericardial mesothelioma, which is found in the heart cavity. The name "mesothelioma" is derived from mesothelium, which is a technical term for the lining of the body's most important internal organs (including the lungs, abdomen [which contains the kidneys and liver, for example] and heart). Mesothelioma cancer occurs as a result of the formation of cancerous tumors on the mesothelium; more specifically, the pleura, (lining of the lungs) peritoneum, (lining of the abdomen) and the pericardium (lining of the heart). More about mesothelioma tomorrow.
Until then, feel good and keep smiling! Pat & Pattie
There are a number of different types of cancer, yet we tend to hear about a limited few: breast cancer, colon cancer and prostate cancer are examples. However, there is a type of cancer that is just as devastating- if not more so- than all of the familiar cancer's combined, yet we rarely hear about it. This type of cancer is known as mesothelioma, and if you are unfamiliar with its causes and treatment methods, you may be at a serious disadvantage. There are three varieties of mesothelioma cancer: pleural mesothelioma, the most commonly diagnosed form that occurs within the lung cavity; peritoneal mesothelioma, which manifests in the abdominal cavity and pericardial mesothelioma, which is found in the heart cavity. The name "mesothelioma" is derived from mesothelium, which is a technical term for the lining of the body's most important internal organs (including the lungs, abdomen [which contains the kidneys and liver, for example] and heart). Mesothelioma cancer occurs as a result of the formation of cancerous tumors on the mesothelium; more specifically, the pleura, (lining of the lungs) peritoneum, (lining of the abdomen) and the pericardium (lining of the heart). More about mesothelioma tomorrow.
Until then, feel good and keep smiling! Pat & Pattie
Friday, December 19, 2008
Exciting Yet Alarming News!
This is unbelievable! Remember Barb Davis from Wednesday's post? Her M-spike, or monoclonal protien marker, had gone from practically zero to 6.1 (which is really serious!) in three months. Since Barb had already suffered some liver damage from previous therapies, this was especially devestating news. The liver damage limits her treatment options. I was figuring (and she probably was thinking this too!) that she might only have a year or two to live, maybe less. A transplant that wasn't working. A return of her cancer that was progressing at record breaking speed. Use of the two most successful myeloma therapies contraindicated. Barb was running out of options! HOLD EVERYTHING! It now looks like the lab made a mistake! A second test, drawn out of disbelief and dismay at her Wednesday appointment, has come back showing an M-spike of .01, the same, more expected number from three previous months. UNBELIEVABLE! Pattie and I are so excited and happy for Barb. But in another way, this news is very disturbing! How could the pathologist/lab get this so wrong? What if Barb would have been so distraught that she gone out and quit her job? Or lashed out at friends or family, permanently damaging those relationships? Or worse yet, had attempted to take her own life? This is upsetting on so many levels. I'm not a litigious person, but if something like this happened to me, I might consider suing. At least this story has a happy ending- and reminds us all to double check and varify any and all test results before making treatment decisions. And please, please seek a second opinion whenever you are facing a surgery or any type of serious diagnosis. For now, let's all be happy!
Feel good and keep smiling! Pat & Pattie
Feel good and keep smiling! Pat & Pattie
Thursday, December 18, 2008
More From Twin Cities Myeloma Seminar
Tuesday I wrote about Dr. Helen Healy's nutritional presentation at the Twin Cities Myeloma Foundation Seminar in Bloomington, Minnesota. Today I will conclude my report with some key points made by Dr. Morie Gertz- Chair of the Department of Internal Medicine at Mayo Clinic. Dr. Gertz presented an insightful overview of multiple myeloma using the analogy of a garden. Your bone marrow is the garden and myloma plasma cells are the weeds. There are a number of promising chemotherapy agents that are good at killing many of the weeds without doing too much harm to the garden. But none of these agents can cure the disorder. The cancer always returns. Stem cell transplants of several types destroy the garden and use stem cells that were previously harvested from the patient, or a donor, or from donated cord blood as seeds. The garden (bone marrow) begins to grow anew. But most often some weeds remain hidden in the body, or in the newly planted seeds, or begin to grow again because of a genetic flaw in the patients plasma cells. If you go to http://www.hemotology.org/ as early as next week, transcripts from last weeks 50th annual ASH (American Society of Hematology) conference in San Francisco. I tried today and info from the conference was not yet available. In a brief update about the conference at the end of his presentation, Dr Gertz noted that the most promising and popular direction for therapy targeting myeloma are all combination studies. In other words, using many of the same, newly developed drugs in different combinations and comparing the results. So far, most every combination seems to be working. The trick will be to find which combinations work best for which patient. Dr. Gertz ended his presentation with a plea for all of the myeloma patients in attendance (I estimate between 30 and 40 patients were there... Total attendance, including caregivers and guests was probably twice that number) to join clinical studies whenever possible. "There is at least one study open to every myeloma patient of one kind or another." Dr. Gertz explained. He went on to stress that you may not be eligible for a number of them. But if you check with Mayo Clinic and other myeloma research centers you will find studies that don't show up on government or organizational lists. Smaller, internal studies. Mayo Clinic has about 30 myeloma studies going on right now that aren't even officially registered on the IMF or government Websites. Why participate? Besides the fact that much, if not all of a patients care and drugs are paid for, Dr. Gertz felt that myeloma patients have an obligation to help doctors compile as much data as possible to help future patients. The only studies that really help the specialists, Dr, Gertz concluded, are studies using live patients. Studies that are performed in a setting like Mayo where there are a number of specialists studying the data and interacting with each other, collaborating regularly. It makes me proud to be a Mayo Clinic patient! And Dr. Gertz' presentation motivated me personally to search out a study, probably post transplant. He suggested several. For example, the control group, post transplant, uses no maintenance therapy. The other group would recieve regular doses of Velcade. (or Revlimid, or Thalidomide, etc) and then the researches could chart and follow the results. Differect doses and dosing frequency also need to be compared. The best news for me personally is that Revlimid continues to work and I don't need the transplant yet. The time will come soon enough. But not this today!!! I hope the same for every cancer patient and survivor that reads this post!
Feel good and keep smiling! Pat
Feel good and keep smiling! Pat
Wednesday, December 17, 2008
Sometimes Transplants Work, Sometimes They Don't
I will post about this weekend's second myeloma seminar speaker tomorrow. Tonight, I would like to share my thoughts as I reflect back on an eventful day. Late this morning I learned that a dear friend of mine, Barb Davis, may be facing a serious relapse from her multiple myeloma. Barb underwent a particularly difficult autologous stem cell transplant at the University of Minnesota Medical Center one year ago. As I recall, Barb had some adverse reactions to some of her medication. It was painful and debilitating for months. It was also joyous. Barb has been effectively in remission ever since: traveling, spending time with family and friends, enjoying life. Now, barring a mix-up with her blood tests, she has learned that her myeloma has returned. This evening I received a call from a personable gentleman named Jose from New Jersey. He volunteers as a counselor with the Cancer Care Help Line, calling newly diagnosed myeloma patients with a hopeful message. Jose still works full time as a grocery store manager in New York City, despite the fact that he was diagnosed with Stage IV multiple myeloma in the year 2000. He immediately underwent an autologous stem cell transplant, just like Barb. Eight years later, his myeloma may be slowly returning, but so far so good. I couldn't help but think about these two brave cancer survivors. I asked myself: Why did Barb's transplant only last one year while Jose, who was much more seriously ill at the time, undergo the same procedure but enjoy many more years of success? My understanding is the average autologous transplant works for about 18 months. But we all want to believe that we will be the exception... That our transplant, or chemotherapy, or remission will work better or last longer than expected. 18 months is an average. That means half of the patients will stay in remission for longer than 18 months, but one half of the patients won't. I pray that some way, some how, there was a mistake with Barb's monoclonal protein test. But even if there wasn't an error, I have faith that she can find another way to hang on and continue to actively live her life with joy and love.
I hope that all of you can feel good and keep smiling! Pat
I hope that all of you can feel good and keep smiling! Pat
Tuesday, December 16, 2008
First Report From Twin Cities Myeloma Foundation Seminar
As previously reported, I attended the annual Twin Cities Myeloma Foundation Seminar at the Sofitel Hotel in Bloomington, Minnesota Saturday. The first speaker was Helen Healy, a Doctor of Naturopathic Medicine from St. Paul. Dr. Healy's presentation about nutrition for cancer patients was specifically structured for leukemia and myeloma patients. Goal number one: Improve bone marrow health. Dr. Healy recommended eating dark, leafy greens to help support the bone marrow. Spinach, kale, parsley, mustard greens, collard greens, watercress, turnip greens were all sited as being beneficial. Supplements might include taking Marrow Plus, a combination of Chinese herbs formulated into a tablet form. She also recommended taking shark liver oil capsules. Considering that Dr. Healy works with so many vegetarians, I was surprised that she suggested patients with low white or red blood counts consider eating some lean, red meat daily. Consider liver, bison, elk and organically raised beef. She reminded myeloma patients that vitamins D and K are both important when trying to absorb calcium into the bones. Myeloma patients with any bone damage should consider taking 1000 mg of calcium citrate, along with 2000 iu's of vitamin D3, 2-5 mg vitamin K2 and 500 mg of magnesium to promote good bone health. For neuropathy, Dr. Healy recommended using R-Lipoic acid, L-Glutamine, B12 and B complex. Questions? Contact Dr. Healy by calling 651-282-6319.
Feel good and keep smiling- Pat
Feel good and keep smiling- Pat
Monday, December 15, 2008
Cancervive Helps Cancer Survivors
A non-profit group in California, Cancervive, features a great Website with valuable information to help cancer survivors. Go to http://www.cancervive.org/index.html to use their wonderful site.
Feel good and keep smiling! Pat & Pattie
Feel good and keep smiling! Pat & Pattie
Saturday, December 13, 2008
Report from Twin Cities Myeloma Seminar
I attended the Twin Cities Myeloma Foundation Annual Educational Seminar in Bloomington, Minnesota yesterday. It was a wonderful gathering featuring two exceptional speakers. Helen Healy, a Doctor of Naturopathic Medicine, was the first speaker. Dr. Healy provided a number of useful tips aimed at improving a cancer patients overall nutrition. But what I found most useful was her emphasis on ways to strengthen and fortify bone marrow using natural foods and supplements. This should be of special interest to leukemia and myeloma patients. The second speaker was Dr. Morie Gertz- Chair of the Department of Internal Medicine at Mayo Clinic in Rochester, Minnesota. Dr. Gertz just returned from the American Society of Hematology's 50th annual conference in San Francisco this week. I will post about both presentations over the next few days. But I do want to share this comment, made by Dr. Gertz, near the end of his two hour presentation. Let me preface this by noting that my impression of the good doctor was very positive. He obviously has a brilliant medical mind. Tall and thin, Dr. Gertz has a very deliberate and dry speaking style- definitely not prone to drama or hyperbole. So when he shared with us that he left the conference feeling uplifted and hopeful about future therapies for leukemia and myeloma, it left us all feeling excited and hopeful as well!
Feel good and keep smiling! Pat
Feel good and keep smiling! Pat
Good News & Bad News
According to the World Health Organization, cancer cases in the United States are now declining yearly. Despite an aging population, fewer smokers and better therapies are most likely the reason for the drop. However, as reported today on CNN, newly released statistics from the WHO confirm the likelyhood cancer will overcome heart disease and become the world's number one killer as early as 2010. Click on the following link to learn more: http://www.healthnews.com/disease-illness/cancer-will-be-worlds-leading-killer-by-2010-2261.html.
Feel good and keep smiling! Pat
Feel good and keep smiling! Pat
Friday, December 12, 2008
Doctors Are Your Healing Partners
I was re-reading a great, basic primer about dealing with cancer called Cancer- 50 Essential Things to Do, by Greg Anderson today. In Chapter 18, Anderson discusses operating under new assumptions. My favorite is this: Instead of being the authority, a doctor or other health care professionals are your healing partners. As a former coach, I imagine that I am assembling a medical team. My internist or general practitioner, my oncologist, oncology nurses, specialists at Mayo clinic, a nutritionist and naturopathic doctor. Your team might also include an exercise or occupational therapist, chiropractor and/or counselor. Almost everyone that enters the health care profession wants to help you, their patient. It is your job to coach, coordinate or orchestrate their efforts to maximize this help. Like other, more traditional coaches and teams, there will wins and losses. Good days and bad. It isn't easy. But you can do it!
Feel good and keep smiling! Pat
Feel good and keep smiling! Pat
Thursday, December 11, 2008
Mayo Clinic Cancer Information
Having received excellent medical care and advice from Mayo Clinic, I know I am biased. But I really like their comprehensive cancer information Website. Click on
http://www.mayoclinic.com/health/cancer/CA99999 and see what you think. You can link to most common cancer sites like breast or lung using their quick search feature. Or for less common cancers like myeloma, simply enter cancer type in the search bar, which is located on the upper right hand corner of the screen. That will take you directly to the appropriate site.
Feel good and keep smiling! Pat
http://www.mayoclinic.com/health/cancer/CA99999 and see what you think. You can link to most common cancer sites like breast or lung using their quick search feature. Or for less common cancers like myeloma, simply enter cancer type in the search bar, which is located on the upper right hand corner of the screen. That will take you directly to the appropriate site.
Feel good and keep smiling! Pat
Wednesday, December 10, 2008
The Holidays Are A Time For... Stem Cell Transplants?
Our myeloma support group gathered for a holiday party today in Stillwater, Minnesota. A time to share and reflect on the past year. The food and company were great! We talked, laughed, and a few even cried as we shared our recent experiences. Coincidentally, three of our members plan to undergo stem cell transplants in the next four weeks. Another hopes to have her stem cells harvested for a future transplant, if necessary. Two transplants will be autologous, using the patients own stem cells. Steve, who could not attend as he prepared for his transplant, will be receiving stem cells from several donated umbilical chords. These are all serious procedures. Even the harvesting of stem cells can be difficult for some. (I know, because my collection took fifteen days at the Mayo Clinic last year!) All were in good spirits and optimistic about the future. God bless them! I care deeply for all of my fellow cancer survivors who attend these meetings. One of those scheduled to undergo a transplant, Ardy, was seated at my table. She shared with the group how surprising it is that we could all be from such different backgrounds, yet share this common bond and feel so close. Amen! I am honored to call these people my friends. Pattie and I wish all of the group's forty or so members have a safe and healthy holiday!
Feel good and keep smiling! Pat
Feel good and keep smiling! Pat
Tuesday, December 9, 2008
Eva's Divas Helps Promote Ovarian Cancer Awareness
Eva LaRue, co-star of the CBS drama CSI-Miami, has launched an ovarian cancer awareness campaign called Eva's Divas. Eva is working with the National Ovarian Cancer Coalition to help women learn and identify the early warning signs and symptoms of ovarian cancer. Since there is no blood test or marker for ovarian cancer, it is often misdiagnosed. By the time it becomes symptomatic, the cancer has progressed and spread, making it difficult to treat. Click on this link: http://www.ovarian.org/evasdivas/ to learn more. I wrote this immediately after watching Eva on an afternoon talk show. I accessed the link, pasted it, copied it and tested it. Everything worked. I noticed later that the link did not work. I think that so many viewers tried to go to the Website at once that their host server crashed! If the link doesn't work soon, please let me know.
Feel good and keep smiling! Pat
Feel good and keep smiling! Pat
Monday, December 8, 2008
Excellent Colon Cancer Newsletter
My mother is a colon cancer survivor. I received an excellent newsletter about colon cancer today called Colorectal Cancer Connections. It features a wide variety of articles and easy to use links. I highly recommend that anyone with an interest in this type of cancer register today. There is no charge to subscribe. Click on https://www.colorectalcancerconnections.com/ccconnections/gncrc_web_enr_formStep1.jsp?hl=en&pwst=1&sa=X&oi=spell&resnum=0&ct=result&cd=1&q=colon+cancer+connections&spell=1 I think that you will find their newsletter useful and informative.
Like Pat always says, feel good and keep smiling! Pattie
Like Pat always says, feel good and keep smiling! Pattie
Sunday, December 7, 2008
Why Don't They Ever Call?
Almost daily, I meet fellow cancer survivors and their family members. Often we have surprisingly detailed and touching conversations about our cancer and how it effects our lives. I always end the conversation by giving them one of my http://www.helpwithcancer.org/ cards and asking them to call or e-mail for any reason at all. To talk, to access resources, locate a support group, for emotional support. Rarely do I ever receive a call. Is it my breath? I shower daily. I am an outgoing guy, but I don't think I'm that scary or forward. Is it they don't want to impose? Are they afraid to reveal themselves? Or maybe they just don't want to deal with reality, or aren't ready to open up yet. I'm OK with that. But it does sadden me occasionally. I can tell some survivors could really use a friend, or would benefit from joining a support group. Your thoughts? Anyway, help spread the word about our Website, and feel free to contact me or Pattie anytime at pat@helpwithcancer.org.
Feel good and keep smiling- Pat
Feel good and keep smiling- Pat
Saturday, December 6, 2008
Jack Pacowta Will Be Missed
Jack Pacowta, chairman of the multiple myeloma support group in Jacksonville, Florida recently passed away from complications associated with his myeloma. I never met Jack, but I valued our phone conversations and e-mail communication. Jack was a realist. Jack was blunt. Jack was a fighter. Very entertaining, engaging guy. Originally from Connecticut, Jack and his wife, Anne, moved to Florida after his myeloma became symptomatic. He will be missed. Pat
Friday, December 5, 2008
What Causes Cancer And Why Is It Important To Know?
Nature vs nurture. Yin or yang? Chicken or egg? What causes cancer? Genetics? Exposure to industrial chemicals like Benzene? Pesticides? Exposure to the sun? Poor nutrition? Stress? Genetics? The answer is yes! Yes to all of the above and more. It seems clear that there is no one cause of cancer, just like there is not and will not be a single cure. Recent innovations in chemotherapy use different drugs in various combinations to fight cancer. Why do some patients respond to one drug combination but not another- or not at all? Studies are beginning to prove that it is the genetic component which effects how well a therapy will work. Environmental factors seem to often contribute to the type or severity of the cancer. But genetics probably are what allows the cancer to get started in the first place. Refer to my "Bank on a Cure" post from November 19th to learn more.
Feel good and keep smiling! Pat
Feel good and keep smiling! Pat
Thursday, December 4, 2008
Increased Risk Of Leukemia Linked To Benzene
Here is an interesting article about increased leukemia and myeloma risk after exposure to Benzene, a commonly used industrial chemical. Click on this link to read more: http://www.reuters.com/article/healthNews/idUSTRE4AH85R20081118
Most people with cancer want to find the cause; something or someone to blame. But really, what difference does it make? It's too late- You already have cancer! Think about that and I'll write more about it tomorrow.
Feel good and keep smiling- Pat
Most people with cancer want to find the cause; something or someone to blame. But really, what difference does it make? It's too late- You already have cancer! Think about that and I'll write more about it tomorrow.
Feel good and keep smiling- Pat
Wednesday, December 3, 2008
Off-Label Treatment For Cancer
According to the book, Everyone's Guide to Cancer Therapy, half of all uses of cancer drugs are not those listed on the official package insert or label. This can become a problem when it comes time for insurance reimbursement. If your insurance company denies your claim, get your doctors involved and appeal! If you and your doctors can prove that the drug in question is commonly used off-label to treat other cancer patients, the bill will most likely be paid. You may want to seek authorization prior to treatment just to make sure. That has happened to me several times. My insurance company denied coverage, only to give in later. I chose not to use the drugs until I won my appeal. But if time is short you may not have that luxury. Drug manufacturers often have help available to support your appeal, or to act as a safety net if payment is not approved. Selgene Corporation's foundation generously agreed to pay for my first round of expensive chemotherapy while I fought for insurance approval. If your initial submission is denied, call the company that manufactures the drug immediately and seek their advice. They should be happy to help. After all, if insurance won't pay, it's more than likely you won't be using the drug in the future.
Feel good and keep smiling! Pat
Feel good and keep smiling! Pat
Tuesday, December 2, 2008
Free American Cancer Society Newsletter
The American Cancer Society has started an excellent
e-newsletter. I just received mine today.
Go to http://www.cancer.org/ to subscribe.
Feel good and keep smiling! Pattie
e-newsletter. I just received mine today.
Go to http://www.cancer.org/ to subscribe.
Feel good and keep smiling! Pattie
Monday, December 1, 2008
Prostate Cancer, Continued
While Pattie and I were away visiting my family Thanksgiving weekend, I was able to write one day about my parents experience with prostate cancer. A close friend, Gene Kruschek, was diagnosed with prostate cancer about six months before me. Gene was given three months to live. Now, over two years later, he is alive and well! Please read his insightful comments in response to my weekend post.
Feel good and keep smiling! Pat
Feel good and keep smiling! Pat
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