US News & World Report Article About Acetaminophen

TUESDAY, June 30 (HealthDay News) -- U.S. health advisers recommended Tuesday to lower the maximum dose of over-the-counter acetaminophen -- the key ingredient in Tylenol, Excedrin and many other pain-killing medications.
The advisers' vote followed the release of a U.S. Food and Drug Administration report last month. It found that severe liver damage and even death can result from a lack of consumer awareness that acetaminophen-- which is easier on the stomach than painkillers such as aspirin and ibuprofen -- can cause such injury.
Also, many people may take more than the recommended dose of acetaminophen-based, over-the-counter pain relievers in the mistaken belief that taking more will be more effective against pain without posing health risks. And consumers may not know that acetaminophen is present in many over-the-counter products, including remedies for colds, headaches and fevers, making it possible to exceed the recommended acetaminophen dose, the report said.
The FDA advisory panel voted 21-16 Tuesday to lower the maximum daily dose of nonprescription acetaminophen, which is currently 4 grams - equal to eight pills of a drug such as Extra Strength Tylenol. The panel was not asked to recommend another maximum daily dose.
The panel also voted 24-13 to limit the maximum single dose of acetaminophen to 650 milligrams. The current single dose of Extra Strength Tylenol, for instance, is 1,000 milligrams.
The panel also voted 26-11 to make the 1,000-milligram dose of acetaminophen available only by prescription.
The advisers voted against other safety restrictions for other over-the-counter drugs such as NyQuil or Theraflu, which contain acetaminophen and other ingredients that treat cough and runny nose. Patients often mix the cold medications with pure acetaminophen drugs, like Tylenol, leaving them vulnerable to dangerously high levels of acetaminophen.
The FDA is not obligated to follow the recommendations of its advisory panels, but it typically does so.
Despite more than five years of FDA-sponsored consumer education campaigns, "recent studies indicate that unintentional and intentional overdoses leading to severe hepatotoxicity [liver damage] continue to occur," last month's report said.

These recent reports are of special interest to me and a number of other cancer patients who use Tylenol as part of their daily pain control regimen. I take up to 4 grams of acetaminophen each day to help take the edge off my bone pain caused by multiple myeloma. I shared my concern about my heavy use of Tylenol long before these reports began to surface in my book, Living with Multiple Myeloma. More about maximum doses and the possible repercussions tomorrow.

Feel good, keep smiling and don't take too much Tylenol! Pat

An Article About Health Care Worth Reading

Here is an excellent, in-depth article about health and cancer care in "The New Yorker Magazine." A great read!

Feel good and keep smiling! Pattie

Helpful, Interactive Information About Cancer Available On "The Cancer Forums"

The Cancer Forums is a Website which hosts a number of different forums covering a wide range of cancer related topics. You can learn a lot from sites like these. Just be careful: It can be difficult to differentiate between fact and opinion. Still, I have often said you can learn more from the patient than the doctor! Talking or e-mailing with a wide variety of patients with any type of cancer can be very enlightening.

Feel good and keep smiling! Pat & Pattie

Many More Cancer Patients Expected Soon

According to a recent report in the Journal of Clinical Oncology, the number of newly diagnosed cases of cancer each year are expected to rise from 1.6 million in 2010 to 2.3 million cases in 2030. OUCH! Hope our dysfunctional health care system is ready for the onslaught! Primary reason for the dramatic increase is an obvious one: Our aging population.
Feel good, keep smiling and try to stay young! (Good luck!) Pat & Pattie

Multiple Myeloma Blog Launched Today!

I am excited to announce that, starting today, I will also be posting daily on our new site, www.MultipleMyelomaBlog.Com. This www.HelpWithCancer.Org site is designed to be all-inclusive and cover a wide range of cancer and nutritionally related topics. But my personal struggles and involvement with the multiple myeloma community tend to dominate this blog. Many of the questions and concerns from our readers so far are myeloma related. So, starting today, I will be writing about multiple myeloma every day on the new site as well.

There are already a number of excellent myeloma related sites out there. I will shamelessly borrow material from these sites as we all try to get the hopeful word out there that a multiple myeloma diagnosis should no longer be viewed as a death sentence!

Feel good, keep smiling and please check out and participate in our exciting new blog! Pat

Second-Line Chemo For Ovarian Cancer

The OncologyChannel Website reports that, at the present time, only two drugs - hexamethylamine (Hexalen®, altretamine) and topotecan hydrochloride (Hycamtin™) - have been approved by the Food and Drug Administration (FDA) for use as second-line, or "salvage," agents in ovarian cancer (for example, metastatic ovarian cancer patients in whom initial or subsequent chemotherapy with paclitaxel and cisplatin has failed).

The following drugs are the most common "second-line" treatment options for ovarian cancer:

Adriamycin®, Rubex® Doxorubicin
Doxil® doxorubicin HCl liposome injection
Hexalen® Altretamine; hexamethylmelamine
Hycamtin™ Topotecan hydrochloride
Ifex® Ifosfamide
VePesid® Etoposide (VP-16)
5-FU 5-fluorouracil

Paclitaxel (Taxol®), a taxane compound, is the treatment of choice in platinum-resistant ovarian cancer patients who have not received prior taxane therapy. If the individual's tumor continues to grow after paclitaxel therapy, several other drugs may be considered, such as 5-fluorouracil (5-FU) plus leucovorin (a drug used to counteract folic acid antagonists), doxorubicin HCl liposome injection (Doxil®) ifosfamide (Ifex®), oral etoposide (VP-16; VePesid®), and investigational drugs in phase II studies.

There have been a number of improvements in chemotherapy for ovarian cancer since I was diagnosed and treated in 2001. I endured six difficult months of treatment. A patient with a similar diagnosis today might only have to deal with three months of treatment. Doses also tend to be lower, as oncologists use multiple combinations of chemo drugs. Still, progress has been slow and more can always be done.
Feel good and keep smiling! There is always hope! Pattie

Thinking Outside The Box- Have You Ever Considered Using A Cancer Guide?

A good friend and fellow multiple myeloma survivor, Karl Vollstedt, met with his family physician recently who had just returned from a medical conference in Washington, DC. Karl's doctor is also a cancer survivor and shared he had been very impressed with one of the speakers he heard at the conference named Henry Dreher. Mr. Dreher calls himself a "Cancer Guide." Check out his Website. I'm not promoting his approach. But it does seem unique.
Pattie will conclude her series about ovarian cancer treatment options tomorrow.
Feel good and keep smiling! Pat

First-Line Chemo For Ovarian Cancer

According to the Website Oncology Channel, in the United States, the initial treatment of ovarian cancer is now in transition, with most patients receiving primary therapy with drugs that contain platinum and taxane compounds (e.g., cisplatin, carboplatin, paclitaxel); however, other drugs, such as "mustards" (e.g., melphalan) and anthracyclines (e.g., doxorubicin) also show first-line activity in ovarian cancer. The dose, timing, and choice of chemotherapies are determined by factors such as the patient's type and stage of ovarian cancer, her body's response to and recovery from chemotherapy, and her health status.

The following drugs are the most common "first-line" treatment options for ovarian cancer.

Platinol® Cisplatin
Paraplatin® Carboplatin
Taxol® Paclitaxel
Alkeran® Melphalan
Adriamycin®, Rubex® Doxorubicin

All of these drugs have been approved by the FDA (Food and Drug Administration) for the treatment of ovarian cancer.

In general, most ovarian cancer patients undergo six courses of chemotherapy if they have a good response to treatment. At the completion of each two (2) courses of chemotherapy, the degree of response is evaluated. The patient is physically examined, a CT (computed tomography) scan may be taken, and her blood is analyzed for levels of the tumor marker CA125 (see also Laboratory Tests).

Remission—no evidence of disease—is most likely among patients whose CA125 levels drop below the normal value of 35 U/ml before their third chemotherapy treatment.

Thursday I will post an outline for recurrent ovarian cancer.
Feel good and keep smiling! Pattie

Nutritional Myths Debunked- Antioxidants Revisited

Most medical researchers agree that antioxidants provide a number of positive health benefits. Antioxidants are substances that block oxidation and help protect cells from free radical damage. Free radicals can damage DNA in otherwise healthy cells. Some scientists think that this damage can allow cancer to start and grow. Blueberries, red grapes, carrots, red peppers and a number of other fruits and vegetables contain naturally high levels of antioxidants. But what scientists don't know or agree on is what types and dose of antioxidants help your body most. We are all just guessing. And in the true American tradition, if a little of something is good for us, then a lot must be even better! Although there is little evidence that mega doses of antioxidants are harmful to healthy persons, taking large, concentrated doses of antioxidants may not be a good idea for cancer patients undergoing chemotherapy. A number of oncology researchers believe that the protection provided to cells by such therapy against cancer may enable existing cancer cells to resist chemotherapy as well. These oncology docs aren't suggesting that chemotherapy patients stop eating blueberries or oranges. Just stay away from highly concentrated antioxidant supplements immediately before, during or after chemotherapy.
Feel good and keep smiling! Pat & Pattie

Ovarian Cancer Treatment Options- Part Two

According to the American Cancer Society, the standard treatment for women with early-stage , low-risk epithelial ovarian cancer is surgical removal of the ovaries , fallopian tubes, and the uterus (womb) with a comprehensive staging operation. The aim of surgery for this favorable group of patients is cure of the disease. The prognosis for early-stage, low-risk ovarian cancer is so good with a high cure rate (exceeding 90%) following surgery that additional therapy with chemotherapy or radiation therapy is generally not required.

Appropriate candidates for surgery alone followed by observation include women with:
Stage IA or IB

Grade 1 or 2 (low-grade and considered low-risk for cancer recurrence) and,
Non-clear cell type of ovarian cancer
Note:
Some ovarian cancer experts consider grade 2 cancers to be in the high-risk category for cancer recurrence and recommend chemotherapy following surgery (adjuvant chemotherapy). This issue and the treatment decision require a careful discussion with the doctor. Women receiving surgery only followed by observation (also referred to as "watchful waiting") should be followed carefully after surgery with routine pelvic examinations and measurement of CA-125 blood levels.

Pat will be writing tomorrow. I will continue my series on ovarian cancer treatment Tuesday. Feel good and keep smiling! Pattie

Ovarian Cancer Treatment Options- Part One

According to the American Cancer Society, ovarian cancer accounts for 3% of all cancers among US women and is the second most common gynecologic cancer. Despite important advances in the treatment of ovarian cancer, it remains the leading cause of cancer death in US women from gynecologic cancers and comprises 6% of all female cancer deaths. The American Cancer Society expects approximately 21,550 new cases and 14,600 deaths in the US during 2009 (ACS Cancer Facts and Figures, 2009). However, the good news is that between the years 2001-2005, ovarian cancer incidence declined at a rate of 2.4% per year.

Treatment options include surgery, radiation therapy and chemotherapy. Surgery usually includes removal of the uterus and one or both ovaries and fallopian tubes. In very early tumors, only the involved ovary will be removed, especially in young women who desire more children. In advanced disease, as much disease as possible is removed to enhance the effects of postoperative chemotherapy.

Treatment for ovarian cancer continues to evolve and important advances are being achieved, providing patients more choices and improvements in survival and quality of life. Clinical trials will continue to play a very important role in the progress against this disease and patients are encouraged to consider participation in a clinical trial.

Every other day or so I will be passing along information about treatment options for ovarian Cancer. As an ovarian cancer survivor, I am encouraged by the progress oncologists have made using new treatment combinations. I'm OK now. I hope you are too! Feel good and keep smiling! Pattie

Cancer Is Like An Air Conditioning Manual?

I had an air conditioning tech out to our new Florida home today to clean the system, look thinks over and give me some tips about how best to use the system. During our conversation, Greg, the technician, mentioned his father was recently diagnosed with bone cancer. I shared my situation with him and showed him my book, Living with Multiple Myeloma. As the conversation progressed I discovered he wasn't exactly sure what type of cancer his father was fighting. I briefly explained the difference between bone cancer and some other type of cancer that may have metastasized to the bone. He then said yes, his father had been diagnosed with prostate cancer a number of years before. His concern is that his elderly father and mother didn't understand what type of cancer he had and what difference it made. I used the analogy of an air conditioning system. We had just gone on line to print a replacement manual for my Trane system. I suggested he think of the cancer like a home air system. It would be difficult to repair the system without the manual, a system serial number, the age of the system and some knowledge of how the system was working or wasn't working. This made perfect sense to him! He left with my book and a list of questions to ask his parents and his doctors. Nice guy! I hope things work out with his father's upcoming treatment, whatever it may be.
Feel good and keep smiling! Pat

CarePages.com

Last year I wrote about my positive experience with a patient/family journal site many of you are probably aware of called CaringBridge. I still make journal entries on my CaringBridge site once or twice a month. But for many patients and their families, CaringBridge is a communication lifeline. About a month following my original post about CaringBridge, I received the following comment referencing another, more sophisticated patient journaling site:

Hi Pat,
I'm glad to hear you found CaringBridge easy to use during your cancer journey. Are you aware of another service, CarePages.com? CarePages offers a similar free service to journal your experience and keep friends and family in the loop. The site also offers a community of others facing healthcare challenges - discussions, blogs, and the ability to find people like you through an onsite search. I encourage you to check it out and please let me know what you think.
Thanks!
Erin from CarePages

Might be worth a look. Feel good and keep smiling! Pat

250 Posts, But Who's Counting?

I noticed this morning as I signed in to write again that this will be our 250th post on www.HelpWithCancer.Org. Pat and I are both more than happy to help our fellow cancer survivors any way we can!

Following up on yesterday's entry, here is some more information about the American Cancer Society's Relay for Life fund raising program:

Relay For Life communities will celebrate the event's 25th year during 2009. For more information about Relay For Life's history and growth, how to get involved in your community, or to learn about special "Show Us Your HOPE" events taking place during 2009, visit RelayForLife.org.


Team recruitment is central to Relay For Life's success and continues to attract communities across the globe. What started as a one-man fundraiser has grown to include more than 5,000 communities in the United States, as well as 20 other countries worldwide. In 2008, 3.5 million Relay For Life participants raised more than $409 million.

Feel good and keep smiling! Pattie

American Cancer Society Relay For Life

I was proud and honored tonight to be selected as honorary co-chair for Polk County Wisconsin's American Cancer Society's Relay For Live next week. Now, I'm not exactly sure what my duties as co-chair will be. The committee says the only requirement is a short speech at the beginning of the relay, but I'm sure my writing a large check to help support the event will also be involved. I'm just glad I can help! Feel good and keep smiling! Pat

Why Cancer?

A note about Friday's post. Pattie and/or I often write about a wide variety of cancer related topics on this site. But it hasn't been lost on me that most of our regular readers are multiple myeloma patients or family members. I suppose that is understandable. I post about myeloma quite often, since I am myself a survivor. But Pattie is a cervical, uterine and ovarian cancer survivor. My father has prostate cancer. Her mother colon cancer. My mother died of lung cancer. Now back to my point. I find most readers are very specific in their interests. Myeloma, leukemia, liver cancer, whatever. So I risk losing some reader's interest by writing about such a broad array of cancer related topics. To this I say, tough! We should all be interested in cancer--how to prevent it, identify it, stop it! I believe trends are important. It doesn't take an accountant or physician to figure out the more common the cancer, the more funding is allocated toward its treatment. Who is going to speak for the "little guy or gal," Suffering from one of the less common, less glamorous cancers? Doesn't everyone have a responsibility to try to understand and support our fellow human beings who are forced to deal with cancer everyday? I believe there are far more similarities than differences here. The spouse of a woman diagnosed with lymphoma has a lot in common with the husband of a wife with breast cancer. I think of it as a large, not very exclusive club. Once you or a loved one is diagnosed with cancer, everything changes. More about those changes, often called the "new normal," tomorrow.
Feel good, keep smiling and please try and reach out to someone, anyone you know with cancer. We all need your love, prayers and support! Pat and Pattie

Sometimes The Best Prostate Cancer Treatment Option Is To Do Nothing At All!

Here is a short but imprortant article about prostate cancer treatment options:

When a prostate biopsy indicates cancer, you might think you have to choose a treatment quickly. But usually there's no need to rush. Prostate cancer typically is a slow-growing malignancy, and most of the time men have months to consider their options. In this Health Alert, Johns Hopkins explains why active surveillance can be the right choice for some men.

The standard treatment options for prostate cancer include active surveillance, radical prostatectomy, radiation therapy, and hormone treatment. With active surveillance, a man opts to have no immediate treatment but undergoes close monitoring for cancer progression. Today this treatment approach is most often recommended for men with low-grade cancers that are believed to be small volume, especially older men whose cancers are unlikely to become life threatening during their remaining years of life.

The goal of active surveillance is to avoid unnecessary treatment in men whose cancer is unlikely to become life threatening over the next 10-15 years. Fewer than 10% of men who are candidates for surveillance take advantage of this approach.

Understandably, many men can't tolerate the anxiety and uncertainty of leaving a cancer growing -- even very slowly -- in their body. But with close monitoring, active surveillance can be a good choice for some. That's especially true for older men whose predicted life expectancy makes it unlikely that their cancer will progress in their remaining years of life.

The significant upside to active surveillance is that it allows a man to maintain an excellent quality of life without the side effects of radiation therapy or radical prostatectomy. But the approach requires close monitoring for signs of progression. This includes regular digital rectal exams (DREs), PSA tests, and a prostate biopsy each year or at some regular interval.

Not all prostate cancer specialists endorse surveillance. But research indicates that with careful monitoring, it can be a safe approach for many older men. Results of a 12-year study reported in the Journal of the American Medical Association showed only a 0.5% difference in the number of prostate cancer deaths between men treated with radiation therapy or radical prostatectomy and those whose cancers were managed with active surveillance.

Sounds like sometimes it is better to wait when treating prostate cancer.
Feel good and keep smiling! Pat & Pattie

Interesting Cancer Statistics

The American Cancer Society releases a variety of statistics on a regular basis. Here are some interesting stats from the group's most recent report:

Cancer death rates dropped by 11.4 percent for women between 1991 and 2005, with a 37percent decline in deaths from breast cancer and a 24 percent decrease in deaths from colorectal cancer.

The three leading cancer killers in men are lung, prostate and colorectal cancer. In women, they are lung (accounting for 26 percent of all cancer deaths), breast and colorectal cancer.

Men have a 44 percent chance of developing cancer during their lifetime and women a 37 percent chance, although women are more likely to have the disease earlier (before age 60).

Lung cancer shows the greatest regional variation in cancer incidence, ranging from a low of 39.6 cases per 100,000 in men and 22.4 per 100,000 in women in Utah to 136.2in men and 76.2 in women in Kentucky. These statistics correlate directly to smoking rates in the two states, with Utah having the lowest prevalence in adult smoking in the country, and Kentucky the highest.

Blacks still assume a disproportionate share of the cancer burden, with black men being 18 percent more likely to develop cancer and 36 percent more likely to die. Black women have a 6 percent lower incidence rate but this is more than made up for with a death rate, which is 17 percent higher than that seen in white women.
The five-year survival rate for children with cancer is now 80 percent, up from only 58 percent for those diagnosed in the mid-1970s. But cancer is still the second leading cause of death in youngsters aged 1 to 14 (after accidents), with leukemia being the most common cancer diagnosed.

Cancer survivors are about 14 percent more likely to develop a new cancer than individuals who have never had a cancer diagnosis; almost 900,000 cancer survivors have been diagnosed with more than one cancer. Patients diagnosed with tobacco-related cancers, such as cancers of the oral cavity, lung, esophagus, kidney, and urinary bladder, have the highest risk for a second cancer because smoking is a risk factor for at least 15 types of cancer. Breast cancer survivors comprise almost half of women who develop a second cancer.

Interesting answers that, in my mind, only create many more questions. Like Why? Why are cancer survivors more likely to get a different type of cancer? Why is the cancer rate so high in black Americans? Why the variation in lung cancer cases from state to state? We may think we know the answers, just like nutritionists believed, until recently, that selenium helps prevent prostate cancer. (apparently, it doesn't) A few questions to ponder.

Feel good and keep smiling! Pat & Pattie

Side Effects Of Pain Meds- Revisited

Since I was diagnosed with cancer before I was old enough or could afford to retire, I sell real estate as my day job. Between my recent bout with shingles and the compression fracture in my lower back, I have been using a variety of different pain medications to help keep me working. As I sat quietly today in a meeting, I remembered an article I had written about pain meds earlier this year. I wonder if anyone there knew I was "medicated?" (Isn't that a politically correct way of saying I was high?) If the television stations can air summer re-runs, why can't I? Here is the short article about common pain medications and their side effects I posted February 5th:

Yesterday I wrote about three friends, all who endure daily, chronic pain. We all use a different baseline drug to help control our pain. Amitryptline is the least common of these three drugs. It also produces the most severe side effects. Drowsiness, large blood sugar swings and lightheadedness are common. For some (my friend included) extreme weight gain has been reported. Ultram users often become dizzy and/or nauseated. I take Gabapentin daily to help minimize the pain and tingling caused by the neuropathy in my hands and feet caused by my long term chemotherapy. There are few, if any side effects. But it doesn't help much, either! I take one, 300 mg capsule each night in the evening. Gabapentin does make me drowsy, especially in the morning. Sort of like waking up the morning after you take a large dose of Nyquil or other cold medication. If my back pain becomes too much for my Tylenol Arthritis to handle, I use a half dose of Oxycodone. But not before bedtime... I'm pretty "wired" after taking just one half tablet. I would be interested in hearing about our reader's experience with pain medication. E-mail me if you would rather not comment here on our site.

I hope your day will be happy and pain free! Feel good and keep smiling! Pat

Personal Update- Lumbar Compression Fracture

Several days ago I shared with you I was suffering severe back and leg pain, most likely caused by deterioration of a compression fracture of my L-3 vertebra, caused by my multiple myeloma. Today I learned there was good news and bad news. Well, let's say not-so-bad-news and bad news. The not-so-bad-news is I have shingles, a painful (Yes! Very painful!) adult form of chicken pox that attacks the nerve linings. In my case, the lining of the sciatic nerve in my right leg. So I started an anti-viral medication designed to shorten the life and lessen the symptoms of the virus. That news is OK, since it means much of the severe pain I have been experiencing should be short lived. And, since it is pain and not injury- like a fracture or torn muscle or ligament- I can remain active as long as I can cope with the pain. The bad news is it also looks like my compression fracture is worsening. Following an orthopedic and radialogical consult today, it would seem my best option my be a procedure called vertebralplasty. According to Doctors Charlotte Bell and Kieth Ruskin, "In vertebralplasty, a needle is placed directly into the spine. The radiologist then injects methylmethacrylate, or synthetic bone cement, to replace the lost bone strength and prevent future small fractures." Sounds delightful, doesn't it? The good news (There is good news?) is I don't have to decide to have the procedure right away. But according to my internist, Dr. Kari Smith, there is no advantage to waiting. I will keep you updated and describe the procedure in more detail later in the week. For now, I will take my pain meds, try to feel good and keep smiling! Pat

Five Stages Of Living With Mortality Revisited

Last October I wrote about the five common stages most newly diagnosed cancer patients experience following their diagnosis. I feel it is worth another look:

In the book, Everyone's Guide to Cancer Therapy, Malin Dollinger, M.D, and Bernard Dubrow, M.S., describe the five stages of living with mortality. According to Dollinger and Dubrow, "When faced with the threat of death or dying, many patients and their families turn for understanding and guidance to the highly regarded work of Dr Elisabeth Kubler-Ross." Dr Ross is famous for defining five stages of mourning; denial, anger, bargaining, depression and acceptance. But the authors stress that this model may not apply to newly diagnosed cancer patients because they have been told that they have a "potentially" fatal illness that may or may not be imminent. Dollinger and Dubrow feel that disbelief, discovery, redirection, resolution and emerging victorious more accurately apply in this case.
I like number five: Emerging Victorious!

Feel good and keep smiling! Pat

Reaching Out To People With Cancer

Am I the only one who has noticed how superficial the television morning shows have become? Actually, you could say the same for network news, CNN, Headline News, etc. It's like the news isn't enough anymore. Now newsrooms seem to care more about entertainment than newsworthy facts. So this morning, when NBC's Today Show hyped a story about how to deal with others with cancer, my expectations were low. Very low. Much to my surprise, the segment titled "Confronting Cancer Today" actually had some value and held my interest. If you missed it, you can watch the tape and find several relevant articles about cancer by clicking on this link:
Support a Friend with Cancer.
Feel good and keep smiling! Pat

Compression Fracture Set-Back

I don't use it very often, but today I wrote an entry on my CaringBridge site. Many of you may be familiar with CaringBridge- the nation's leading journal site for seriously ill patients and their families. Since most of our blog readers don't read CaringBridge I felt it would be appropriate to reproduce the entry here:

Hello everyone! It has been a number of months since I have written on my CaringBridge site. I post daily on our www.HelpWithCancer.Org site but it is rarely very personal. Since I have been doing so well I haven't felt a need to post here... As a holdover from my dangerously ill early days immediately following my diagnosis, I have always looked at CaringBridge as a place to report dramatic news, good or bad. Up to now I have been stable, feeling fine, exercising and getting stronger. That may have been my downfall! Because although my cancer is under control, the bone damage it left is still there. Improving, slowly healing, but still around. Recently, Pattie and I purchased a second home in Florida. You may remember how hard it has been for me these past two winters, living here on the Wisconsin/Minnesota border. The cold tightens my muscles up like a board. And frigid temperatures cause a bone pain that is hard to describe! So, we found an nice, very affordable home on the Gulf Coast. We have spent much of the past month moving some of our belongings there, doing repairs and landscaping. My body feels so good in the Florida heat! Last week I walked into the house, dripping sweat, with a wide smile on my face. I told Pattie "It feels so good to be able to physically work again... To mow the lawn, plant trees, clean and paint!" Unfortunately, the hot, humid conditions may have allowed me to do much more than I should. Let me explain. My last series of x-rays in January revealed a worsening compression fraction in my L-3 vertebra, caused by my multiple myeloma years ago. Now I am afraid all of my recent physical activity has aggravated the fracture. The fracture has begun to place pressure on my sciatic nerve and has left me with serious, intermittent pain in my right leg and hip. It comes and goes, depending on my body's position at the time, changing by the minute. Very depressing to think I may have caused myself serious and painful injury that could have been avoided. I often feel painful twinges in my neck and back. But one of the positive things about my condition is that these pains are usually better the next day. The pain has never gotten worse with activity- there hasn't been any cumulative damage- until now. It has been unusually cold and rainy here the past few days. That probably doesn't help! My careful weight training and rehab have left my muscles stronger. But obviously my bones have not cooperated and come along for the ride! I am trying not to over-react, but the pain and numbness has been getting worse for two days now. If it gets any worse, I may be forced to take a few days and do nothing but rest- something that isn't easy for me to do! If that doesn't help, a trip to Mayo Clinic may well be in my near future.

Feel good, keep smiling and I will report back on my progress soon- Pat

Can You Prepare For Grief?

Click on and read Preparing for Grief, written by Jane Collingwood. The article is a good, basic introduction or refresher about grief and mourning. I especially appreciated reviewing the list of five steps of mourning we all hear about often.
Feel good and try to keep smiling, even if you are grieving! Pat & Pattie

Cancer Patient Statement Of Rights Petition

Yesterday I wrote about the Cancer Patient Statement of Principles. Click on this link and it will take you to a site where you can sign a petition showing your support for these principles. That information will then be transmitted electronically to important legislators and physician groups and new (and hopefully more inclusive and improved!) health care policy is set at the state and national level.
Feel good, keep smiling and please sign the petition supporting cancer patient rights! Pat

The Cancer Patient Statement Of Principles

HelpWithCancer.Org reader Allison Klein alerted me to a recent Cancer Patient Statement of Principles, released by the International Myeloma Foundation:

THE CANCER PATIENT STATEMENT OF PRINCIPLES:
Prevention, Innovation, Access, and Early Approvals

PRINCIPLE 1:
Prevention is the key to reducing the burden of cancer.
We must support every reasonable attempt to encourage
studies of cause and prevention to reduce the number of
new cancer cases.
PRINCIPLE 2:
Continuing innovation is critical to the early diagnosis and
the more effective and safer treatment of the vast majority
of patients with cancer.
PRINCIPLE 3:
Equality of access (and equality of insurance coverage)
should be available for all patients to all approved cancer
treatments.
PRINCIPLE 4:
National policies and procedures for early approval of
new treatments for cancer and other deadly diseases
need to be reformed and streamlined.
PRINCIPLE 5:
An efficient and effective mechanism is needed to permit
access to unapproved and experimental therapies for
patients who have exhausted other available possibilities.

Works for me! Feel good and keep smiling! Pat

Drug Company Sponsored Public Service Websites

The latest trend in drug company public relations is to establish patient friendly information Websites on a variety of topics, diseases and disorders. Cancer is probably at the top of the list. An example of one of these sites can be found by clicking on the "Liver Tumor" link on the right side of this page. Information quality and ease of use are both excellent. After all, considering the large marketing budgets, the cost of setting up an effective Website for a pharmaceutical company is a drop in the bucket. I'm not as cynical as the tone of my post sounds. In our imperfect health care system, any aid to a patient or their families is a blessing. I just believe the reader should begin their informational search on the Internet with their eyes wide open.
Feel good and keep smiling- Pat

Warm Weather Helps!

I had a lot of bone damage caused by my multiple myeloma a few years back. Fortunately, my myeloma is under control for now. But much of the bone damage remains. We recently purchased a second home in Florida and I have been spending more time here. One of the primary reasons for the home purchase, and possible move here full-time, has been the effect of the warmer weather on my bone pain. It helps! Probably not enough to justify the time, hassle and expense of moving here, but it helps. Today I noticed I had forgotten to take my pain medication... Guess I didn't need it! I have been taking less on my visits here. No offense to Floridians, but if it wasn't for the affordable living and warmer weather, this wouldn't be our fist choice as a place to live. I have described it to friends and family as a "soulless (is that even a word?)place"... Lots of strip malls and concrete houses all lined up in row. It is a southern state, but has very little charm you would associate with Charleston, South Carolina or Savannah, Georgia. Often we feel like we are living in New York or New Jersey (Not that there is anything wrong with that!) since there are so many east coast transplants here. I won't elaborate further because I don't want to get into trouble! At least it is reassuring to know the move may be justified for medical reasons. Neither Pattie or I really enjoy the heat. But it is nice not to hurt so much and the warmer weather makes it easier to stay active, even if it is so muggy and uncomfortable.
Feel good, keep smiling and enjoy the warm summer weather wherever you live! Pat