Did you know?

The IWMF raised more than five million dollars for WM medical research

Did you know?

The IWMF raised more than 60 support groups in North America and nearly 20 others world-wide

Did you know?

The IWMF has a current worldwide membership of nearly 4,000

Did you know?

IWMF-TALK is a wonderful place to share information and learn from other survivors

Did you know?

Each year 1,500 new cases of Waldenstrom's macroglobulinemia are diagnosed in the USA

Did you know?

Volunteers at the IWMF Telephone Lifeline are waiting to share their experiences with you

Did you know?

You can order DVD recordings of past WM Educational Forums online or by mail

Did you know?

All IWMF programs and services are funded by WM survivors, caregivers, friends, and family

Survivors' Corner

The Good News About Waldenstrom’s Macroglobulinemia
 

William Shakespeare wrote, "A thing is neither good nor bad, but thinking makes it so."

 

The bad news about WM dominates our attention, but is there not also a silver lining to the cloud?

 

Many survivors have discovered how a WM diagnosis has radically shifted their perception of life, adjusted their priorities, heightened their sensory acuity, brought a jumble of activities into sharp focus, and, in retrospect, improved their quality of life.

 

Here are some of their stories...

 

Jack Middendorf - How WM Improved My Life »
 

 

I don’t think my history with Waldenstrom's is very heroic or even exciting. However, thinking back to 1999 when I was first diagnosed, I would have liked to hear this story, and it might have brightened what seemed to be a very dark time in my life.

 

First of all, like most folks with WM, I had been feeling crummy for some time. It felt like I was getting the flu, only it lasted for months. I was referred to a rheumatologist, who put me on cortisone for a few months, and I felt great. Then I got off the cortisone, probably a bit too fast, and crashed. I was told I should see an oncologist because new tests indicated that I had some sort of a cancer problem.

 

After a bone marrow biopsy, my oncologist advised me that I had WM. He told me that there was no cure for the disease, that average life expectancy was four to six years (true at the time), and he recommended that I get my affairs in order. He told me that I needed a course of chemotherapy pretty quick. I went home to think it over.

 

Most of us know we are going to die sometime, but most of us don't live like we are aware of it. When a physician says you have four to six years to live, it hits you like a ton of bricks. After I got over feeling sorry for myself, and that took a while, I made a treatment choice of a long course with 2CdA and began seven months of chemo. I got very tired, but not too sick, and never missed one day of work. I did a few other things that might have helped: acupuncture; healing touch with a nurse practitioner; saw a psychologist; slept on a sleeping pad of very thin magnets; and started seeking more spirituality in my life. I shared what was going on with my health to anyone who seemed interested--and a few who weren’t.

 

I had been knocking myself out for 40 years to make money and thought I had better start seeking something with deeper meaning. I decided to retire and started backing down from my compulsively responsible life. It was an amazingly freeing experience.

Where am I now? I remain in remission and feel pretty good for 68.

 

What's the point of this story? I guess it's that there seem to be many different kinds of WM. Most are slow-moving, some are more active. Apparently, only time will tell which kind you have, but, for many, you can plan on a good long life with minimal inconvenience and ill health.

 

Since retiring I have traveled extensively in Europe, started a new business, and, most importantly, learned to "smell the roses." I didn't even know there were roses until I got WM. In that sense, WM has been a positive influence in my life. It got me to slow down, spend more time doing things I wanted to do, like spending time with the grandkids, and made me think about some things and people that I needed to think more about.

 

Bottom line? If I had it to do over again, I would go through the chemo and the WM just to gain what I have gained emotionally and spiritually in the last eight years. My life is probably better now than it has ever been before. At least, in my case, Waldenstrom's wasn’t the end of my life, and in many ways it was the beginning.

 

If I had a message for newly diagnosed WM patients, it would be 'get over it.' Don't waste any more time worrying about what might happen and what could happen. Worry about your spouse, your kids, your own happiness, and what you can have that is good for dinner tonight. The odds are excellent that you will die of something other than Waldenstrom's.

Joyce Korell - It's All About Staying Active »
 

 

I was diagnosed with WM in 2002 and began chemotherapy immediately. I am proud to say that recent bloodwork shows a barely identifiable amount of IgM protein.

 

While receiving that first treatment, I learned about a group called Team Survivor Northwest that sponsors many different physical activities for cancer patients and survivors. The activity which caught my attention was dragonboating, and I joined.

 

There are teams of cancer survivors in many cities. The season in the northwestern States starts in April and ends after Labor Day. The team in each boat consists of ten paddlers on each side, with a caller in the front and a tiller in the back. Practice is held two times a week, and there is usually one race a month in a different city. The races are on a 500 meter course, and each race is completed in three minutes or less. It is a great way to get exercise and be part of a team and have the opportunity to travel to different places. All are great ways to celebrate life.

 

My second passion came after seeing the need for volunteers to help with hurricane relief after Katrina, and I went to Biloxi to help with removing water-damaged debris from houses so they could be restored.

 

My third passion was participating in an Earthwatch expedition to the Galapagos. I was part of a team who helped remove non-native plants from the highlands of Santa Cruz Island. In addition to the work part of the trip, we had free time to visit some of the other islands where I saw sea lions, blue-footed boobies, iguanas, many finches and frigate birds. But the absolute highlight was spending an afternoon in the highland fields with the giant tortoises.

 

I believe that with any kind of active life style the IgM's don’t have a chance of catching up.

Kathryn Griffin - A Caregiver's Viewpoint, by Daughter Cindy Griffin »
 

 

Kathryn Griffin was diagnosed in 2005 at the age of 77. Her daughter, Cindy, wrote from the perspective of the caregiver and learned a lesson about life from watching her mother.

 

Upon diagnosis, my mother was certain that she would not last a year, as her experiences with loved ones with cancer resulted in quick deaths. She had lost a sister and sister-in-law and was the caregiver for my father who had Alzheimer’s.

 

However, with treatment, my mother’s life has been extended and is surprisingly rewarding. She is enjoying a good quality of life, fellowship with friends, and many good times with children and grandchildren. She has enjoyed concerts, went on a cruise, and attended her sixtieth class reunion.

 

Watching my mom has helped me realize that each of our days is a gift, and none of us knows how much time we have left.
 

Bob Lynch - Row Bob Row »
 

 

I was diagnosed in 1995 and began what turned out to be18 months of chemotherapy. My wife and I found ourselves asking what good can come out of this experience. However, during those 18 months we became involved with a support group for WM patients headed by IWMF founder Arnie Smokler. The group consisted of fewer than 50 people, but each one with a burning desire to make a difference. The mission of this group was to raise people’s awareness of this rare disease and to raise money to help fund research.

 

I decided that I should take a pastime that I loved most--rowing--and begin a unique effort to do my part to help. In 1998 I started Cancer Survivor Row. It simply was putting a rowboat in at Key West, Florida, and rowing 150 miles to Miami.

 

The effort was not only exciting, but it raised over $30,000 for research. There were over a dozen newspaper articles and six TV news coverage stories. Over the next six years I completed three more rows and raised an additional $80,000.

 

WM has inspired my life in so many ways but none more than the quality of people I’ve met, including caregivers, patients, medical staff, and just a myriad of human beings who are compassionate and loving. And I can’t wait to see the good that will come out of this.

Dick Weiland- Tumor Humor »;
 

 

I was diagnosed in 2003 on my birthday. Like most, I was very sick, but for some strange reason I started taking notes on funny things that happened. It turned out that the sicker I got, the funnier things appeared. So I started assembling notes, including a few limericks.

 

Here is a sample:

 

[After diagnosis]

 

I am a rare WMer—
Rather like a fading gray ember.
My blood is like glump,
It's thick as a stump,
Tho' normally I think I’m a winner.

 

[After seeing Dr. Morie Gertz at the Mayo Clinic]

 

There is a Doc named Morie,
We saw him and we're not a bit sorry.
He reduced my pills,
Fixed my ills.
So I wasn’t hauled home in a lorry.

 

[After four weeks on Rituxan]

 

There is a drug called Rituxan,
It kills things that are quite toxin.
It reduces the junk,
Makes it all go "Kerplunk!"
And makes you feel like Samson.

 

 

And there is more where that came from. !!!

Ben Rude - From His Memorial Service Memory Book »
 

 

I Will Make A Difference

 

Consider me still among you.
I still stand in your memory.
I will make a difference.

 

Walking shoulder to shoulder,
Through your generous lives,
My heart beating in each beat of yours.

 

I rise with you,
We march together
Side–by–side, making a difference.

 

To your courageous futures,
I leave my life saluting yours.

 

(Anonymous)

Mark Schaible - Ad Inexplorata: Toward the Unknown (see: http://markschaible.com) »
 

 

My story is much different than any other Waldenstroms patient I have ever talked too, but I don't think that is uncommon.

 

It begins in April 1999. It started as a persistent pain in my left hip that lasted for over 18 months. I received numerous MRIs to evaluate the area and was on my way to see a Neurologist when my doctor ordered a routine blood test to eliminate other causal effects.

 

The results floored him when it came back showing a HCT level of 17. He didn't believe the results so he ordered a second test, then two units of blood for immediate transfusion! He was surprised to see me still walking around and was amazed when I told him that two weeks prior I had competed in a team triathlon. Instead of seeing a neurologist, I was promptly admitted to the Naval Medical Center at San Diego.

 

Things then turned for the worse when I was told I had cancer throughout my lymph system, my blood contained cancer cells, and 90% of my bone marrow was cancerous.

 

Coincidentally, I also started to experience the side effects of the cancer to include night sweats (more like swimming) and an antibody started to target my remaining good blood cells for destruction (clinical diagnosis was autoimmune hemolytic anemia).

 

Things did not look good and both Beth (my wife) and I thought I would not live to see my sons first birthday. My mom and dad and Beth's mom were on the next flight to San Diego and stuck with us throughout the entire affair. Thank God for the gift of caring and supportive parents. We would have never made it without them!

 

When we got the diagnosis, our friends and my sister immediately scoured the web and started to gather as much data as possible on this disease which we now knew to be Waldenstroms Macroglobulinanemia.

 

My Oncologist, who is extremely gifted and talented, immediately went to work pumping me up with chemotherapy and 24 units of blood over the next month.

 

It was a very tough time for me since some days I did not have enough red blood cells to be able to get out of bed and I ended up spiking fever after my first chemotherapy and spent fourteen days on the most hideous antibiotics you can imagine (one of the side effects of this cancer has been to eliminate my immune system so an opportunistic infection could be fatal). It was like being on the day after a monster-drinking binge for fourteen days!

 

My first round of chemotherapy was 2Cda. This aggravated the hemolytic anemia so we immediately switched to CVP. The prednisone was the only agent that stopped the hemolytic anemia. After the first month in the hospital, I was finally able to get out of bed a start walking around the ward. This helped my spirits a great deal and my mom was a real trooper walking hundreds of laps around the ward with me.

 

After two months in the hospital and the answers to many, many prayers, I was released from the hospital. I still had much more chemotherapy to go through, but I was home and it felt so good!

 

I immediately started a heavy-duty exercise routine to gain back the thirteen pounds I had lost in the hospital. At first I could only walk around the block, but by the end of September, I was road biking about one hundred miles, running four miles, mountain biking for one-two hours, lifting weights, and swimming two miles per week!

 

At the end of September I competed in the Ridgecrest National Off Road Biking Association Mountain Bike race (my first ever mountain bike race) and placed first in my class and beat eighty to ninety percent of all beginner competitors. The next weekend, I won first place in my class at the Edwards AFB fitness triathlon. Things were looking very good for a full recovery.

 

Things were going very well again until the beginning of November when I started to notice some weakness in my legs. We thought it was due to withdrawal from the high doses of steroids I had been taking over the past few months and was now tapering from.

 

But this was not to be the case. By 7 December, I was basically paralyzed from the waist down, had no upper body strength to speak of, and had lost partial control of the left side of my face. It was serious and the doctors decided to throw the book at it.

 

I spent the next week getting plasmapheresis, high dose steroids, and Rituxin to go after the cancer. The diagnosis was a Waldenstrom's autoimmune antibody induced polyneuropathy. Thanks to many thoughts and prayers, I started the long process of recovery again. I lost seventeen pounds due to the neuropathy (down to 4.3% body fat). For several weeks I went in for plasmapheresis twice a week and immunotherapy once per week (4 total doses).

 

Recovery from my autoimmune induced polyneuropathy (paralyzation) seemed to be going quite well through Christmas, but two days after Christmas; I gave birth to a kidney stone. I found myself lying on the bathroom floor of a local gas station trying to figure out what was going on and praying that it was not a horrible off shoot effect from the cancer, the immunotherapy or the plasmapheresis.

 

After several hours of agony, I relented and headed to the emergency room. By the time I arrived, I was in such pain that I was screaming to God to end my existence. I can now appreciate the pain Elizabeth went through delivering our son Evan. They immediately hit me with a shot of morphine (not enough) then another. I passed the stone about four hours later.

 

In the beginning of January, I regained enough of my muscle strength and nerve control to be able to start walking, swimming and biking lightly. I started the long process to put back on the seventeen pounds I lost due to the neuropathy and was feeling very good. They did finally determine that the neuropathy was being stopped by the high dose prednisone they were giving me in the hospital.

 

The plasmapheresis seemed to have little effect on the autoimmune antibodies but was having a very punishing effect on my veins and body. On the last plasmapheresis treatment, they had to stop half way through due to extreme cramps, burning sensations and seizures in my arms. The immunotherapy was not bad at all. I hardly noticed any effects except a tiny bit of fatigue.

 

My blood numbers were starting to return to normal (IGM level for me has always been between 1600-2100) and things were looking really good for a full recovery and a good showing in the Edwards AFB triathlon on 26 Feb 00.

 

On 11 Feb 00, I was getting my normal blood tests accomplished and I thought all was well when I received a call from the flight surgeon advising me that my platelet count was critically low (21,000, normal was 360,000). The next day we were at Naval Medical Center San Diego in my Oncologists office. He performed a bone marrow biopsy and some more extensive blood work. I was restricted from skiing, biking and all activities that could lead to cuts and bruises due to my inability clot blood.

 

They told me that at my level of platelets, it would take 26 minutes to clot an average cut. They also performed a Dexascan to determine how badly I was developing Osteoporosis due to the high doses of steroids I have been on for almost a year.

 

The first course of treatment for the low platelet counts was to increase my prednisone dose and to take me off all of my other non-essential drugs to try and isolate the cause for the destruction of my platelets. The increased steroids seemed to work.

 

This was a mixed blessing because we were happy that I would not bleed to death, but bad news because the dose required to stop the destruction is twelve times the normal amount produced by our bodies and at this level, the long term usage would start to do permanent damage to my organs, joints and tissue. I felt great and my exercise program was as intensive as ever, but the numbers on a sheet of paper were telling me something different.

 

Luckily, the day before the triathlon, my blood count reached a safe level for me to compete in the event. I placed first in the mountain bike class and beat the second place person by almost 20 minutes. I felt great and still feel great today. My Oncologist decided to try one more time to reduce the level of steroids I was on to see if my platelet count would not drop (thinking it may have been one of the other drugs I had been taking).

 

We prayed daily that the counts would not drop. That was not to be the case, as my count dropped almost immediately. We were blessed with some very good news from the Bone Marrow Biopsy, showing that the cancer now occupies less than 30% of my bone marrow (down from 90%) and it could still drop even more. The Dexascan showed very little bone density loss due to the prednisone, which defied all of the doctor?s expectations.

 

My Oncologist recommended that I have surgery to remove my spleen (where almost all autoimmune antibodies reside) to stop all of these antibodies that are attacking all parts of my body.

 

Their thought was that by doing this my immune system (which has been severely repressed since last April) should return to normal, the platelets should no longer be destroyed, the paralysis should not return and the autoimmune antibody that attacked my red blood cells last spring should never return.

 

It seems I am the poster child for autoimmune antibodies and prednisone! My surgery was accomplished on 22 Mar 00.

It took 7 days in the hospital and about 6 weeks on convalescent leave before I returned to work, but only two weeks before I was on my bike again. I rode about 175 miles that week and attended our IWMF conference.

 

It took a while longer before I could run or swim but by May I was competing again placing fourth in both a mountain bike race and a triathlon.

 

In June of this year we faced another setback. While tapering from the prednisone, my platelet count dropped unexpectedly. My oncologist felt that the spleen removal surgery had failed and now wanted to do an autologous bone marrow transplant.

 

We set up the consult for later in June and in the mean time started seeing a homeopathic doctor who had been recommended to us by a friend. His mother had a similar problem and he was able to cure her using homeopathic remedies.

 

I had nothing to lose so I tried it. Within two weeks, my platelets were back to normal and have not dropped since. I don't know if it was the remedies or the prayers, but I was out of the bone marrow transplant and I could not have been happier.

 

In July, my gallbladder decided to roll over and die. With the autoimmune hemolytic anemia, it is not uncommon to develop gallstones. I had the surgery at night and was back on the road the next day heading for home.

 

Three days later, I was interviewing with a Group Commander for my current job as Squadron Commander. It is very rare for a pilot to be appointed a commander over a non-flying squadron.

 

My appointment had to be approved by a 3-star general. In August I competed in the Mammoth Lakes Triathlon with a course elevation of 8200 feet and placed first in my class.

 

In October I placed first in the Edwards AFB Fitness Triathlon and set a new course record! Things were looking really good that we were finally out of the woods with this cancer. By the beginning of November, I managed to get totally off the prednisone.

 

This lasted only about a week and half when we noticed a rise in my bilirubin and other indications that the hemolytic anemia was rearing its ugly head again. Right now I am back up to 7 mg of prednisone and we are trying to determine the minimum level to keep this antibody in check.

 

Two weeks ago I applied to get back on flying status with the Air Force. The doctor said I had very little chance due to the turbulent year I had just experienced. These were the same doctors who said I would be 100% medically retired the year before.

 

I have great faith that my exercise program and work ethics will shine through any difficulties that have arisen from this disease.

 

Last week I received news that I was selected to attend Air Command and Staff College. This is a very elite school for mid-grade officers and represents a huge stepping stone in my career as an Air Force Officer and Test Pilot.

 

We don't know what the future holds for us, but we are keeping a positive attitude and letting God decide our course and destination.

People always ask me how I do it. I would say my greatest strength is not allowing cancer to rule my life. It is a part of my life, but does not control any facet of my life.

 

I refused to have a central line put in because it would be a constant reminder that I have cancer and it would place limitations on how I had to live my life. I never think about the disease.

 

I refuse to let it handicap me in any way. I still fly gliders, I exercise like I have no disease, and I work at my job just like anyone else does. Nike came up with a great motto: "Just do it!" I think we should all live our lives that way.

 
 

Peter DeNardis - 2011 Jefferson Award winner reflects on his life with WM and diagnosis at 43 »
 

One on One: Peter DeNardis

Pitt staffer's efforts recognized with Jefferson Award

Posted By editor On October 27, 2011 (4:15 am) In Feature, Volume 44 Issue 5

 

 

This month, Peter L. DeNardis, senior management information analyst in the Department of Planning and Analysis and a part-time instructor.

 

In addition to his Pitt responsibilities, DeNardis, who earned a Pitt MBA and has completed coursework for a doctorate at the Graduate School of Public and International Affairs, volunteers up to 40 hours a month at IWMF. The foundation was established in 1994 as a support group for those diagnosed with Waldenström’s macroglobulinemia (WM), a rare — and incurable — lymphomic cancer.

 

About 1,500 people are diagnosed with the disease in the United States each year; worldwide, the ratio is approximately three per 1 million people.

 

DeNardis has served on the IWMF board since 2007, is the foundation’s webmaster and has provided guidance to WM patients as manager of the discussion list, which boasts more than 1,500 members. He also speaks at the annual IWMF educational forum, a national gathering of WM patients and families.

 

And DeNardis really knows of what he speaks: In 2003 at age 43, with a wife of 20 years and kids aged 16, 14 and 7, he was diagnosed with WM and told that the disease likely would kill him in a few years.

 

DeNardis — now 51, in remission for the past two years and determined to beat the disease — sat down recently with University Times staff writer Peter Hart to reflect on his life and WM’s impact on it, as well as to spread the word about this rare disease.

 

UNIVERSITY TIMES: How did you discover you had this disease? DeNARDIS:

 

It was through a routine blood test. At the time — it was June 2003 — I was having some symptoms, but I attributed them to over-work, just being tired. Fatigue is one of the symptoms. I also had night sweats and severe nose bleeds. Those are classic symptoms, but at first I didn’t know what it was.

 

I have another chronic condition — not as bad as WM — called Crohn’s disease. I found out about that in 1983. It’s not necessarily fatal, but it is a chronic illness that affects your intestines. The first couple years were rough, but ever since then I haven’t had any symptoms, which is rare.

My gastroenterologist does blood work every time I go in for a check-up. The results came back that June, and he said, “You have elevated protein levels. You need to call this doctor.” A specialist.

 

But I put it off. Then [my doctor] called me in September and asked, “Did you go yet? You really have to go.” He normally doesn’t call me. So I called the number and the response on the other end was “Division of Hematology.” I said: Wait a minute: Hematology? That sounds like cancer. So I went in and was diagnosed [with WM] in October.

 

At the time of the diagnosis, I was shocked, especially because it was incurable and also because normally it’s people in their 60s who get it, not somebody in their 40s. At the time, the prognosis was seven years to live.

 

There are a lot of other factors associated with WM. It does affect your immune system. It’s a blood cancer. Your B-cells (white blood lymphocytes) are producing proteins at levels that are out of control. It’s the chemotherapy that brings that back under control. But that affects all your B-cells; unfortunately, even the good ones go away. I was fortunate that I got treated right away in 2004.

 

Did you have to alter your lifestyle as a result of the diagnosis?

 

No, I was able to maintain a regular working schedule and have regularly scheduled chemotherapy sessions. But the disease depressed my immune system, so I just had to be careful.

 

I didn’t even lose my hair. Research has advanced now in chemotherapy so there are a lot of things they can do now to keep you from losing your hair or getting sick, at least for lymphoma.

 

Then I had five pretty good years of remission. I’m not sure it’s called complete remission, because I still had some abnormal blood values, just not enough to make me sick.

 

What was your reaction when you were first diagnosed?

 

My wife and I went in together. And the doctor wrote on his whiteboard, trying to explain to me what my condition was.

 

So I said, “Well, okay, what can we do about it?”

 

He said, “Well, there’s chemotherapy, but the general consensus is you can expect about seven or eight years of longevity.”

 

My wife and I just sat there, kind of looking at each other. And he looked at us and said, “You guys don’t look upset.” I said, “Well, I’m just ready to fight it now. I have children to think about.”

 

Did your experience with Crohn’s disease help prepare you?
 

 

I think that experience kind of gave me a false sense of invincibility. But also it gave me determination and the knowledge that if I tried things I could beat it. Of course, at the time I didn’t know the full ramifications of WM, but in the back of my mind I was saying, “Okay, I’ve done this before, I can do it again.”

 

So, from that point on it’s been basically a battle. My concern, even right from the start, was not for me but it was for my wife and kids, that I might not be there for them.

 

Did you hold a family meeting after the diagnosis?

 

Yeah. We thought a lot about what we were going to say. We just told [the three children] I was sick but that I was going to get treatment and I would be okay. They took it well; they were just concerned.

 

You said there have been rough spots even after five years of remission. Did the disease recur?
 

 

Yes. We went on vacation to Italy. And right before I came back I started to have flu-like symptoms and coughing, and when I got back to the United States, I realized my immune system had gone out of whack. I had noticed beforehand that some of my bad blood values were trending upward. Not too significantly, but still I saw a pattern, so I knew something was coming.

 

So after I came back, I started to get odd symptoms and infections and severe back pain. I learned the disease was reoccurring and I had a tumor at the base of my spine, which is rare also. Only about 10 percent of WM patients get that. So, I was hitting the lottery once again. I’d be rich if it wasn’t disease-related (laughs).

 

Did you need an operation to remove the tumor?
 

 

No, it was a combination of chemo and radiation, although that time I did lose my hair. That was almost two years ago.

 

When the disease recurred, did you have to stop working?
 

 

The folks here were very flexible, and I’m really appreciative of what they did. I was able to work at home on certain occasions. Other occasions, of course, I had to use up my vacation and sick time, and I had to go on short-term disability for a time. Still, they worked very carefully with me to make sure that things worked out. Every employer should be like that.

 

Other than your determination, is there anything that has helped you cope with this disease?
 

 

I still go to church and we would tell people at our church to put me on their prayer lists. People in the church’s support group would say yes to that. One person even said when she went to Israel, she went so far as to go to the Wailing Wall and put a note in there for me. Covering all bases — I think that helped, I don’t know. I can’t be sure, but I can’t discount it, because medically we still can’t pinpoint what worked, other than maybe it was the combination of chemo and radiation, but still for others with WM that doesn’t work. Every experience with this disease is different.

 

I count myself fortunate, put it that way. Maybe it was the good intentions, the positive thought processes or whatever. But I’m back in remission and have been for two years. All the blood work is normal, although I have a lingering reminder: peripheral neuropathy in my right foot, where basically your foot gets numb, but you also get shooting nerve pain.

 

Do you think of yourself as a survivor?
 

 

I think of myself as a warrior. Survivor is too passive for me. My experience, though, has led me to be a supporter of others. What that comes from is that when I was first diagnosed I contacted other people who had the disease and they helped me. So through that whole process I just felt, Jeez, those people helped me, I should be able to help other people, because there are always new people being diagnosed. Kind of a mentorship.

 

How do you advise other patients?
 

 

It’s usually by email or the Internet, but also by phone. Once a year we have a major gathering that rotates among different cities, and that’s all coordinated through the IWMF. The foundation was started in ’94 by a patient who happened to be a pharmacist. I guess having a medical background he was surprised at the rarity of the disease, but more surprised by the lack of information about it. He decided to do something about it. IWMF started out as a small support group, and then branched out to be an organization that reaches around the world.

 

When you speak at the IWMF educational forums, what is your message?
 

 

We usually have 200-300 patients attending, along with their spouse or significant other. The IWMF researchers, the doctors are there, too. At the last event they had what they call the veteran panels — it’s kind of odd now to me that after so many years I’m now a veteran. Three of us spoke about our experiences, and I presented everything I went through. I tried to present it in a positive light: Here I am and I feel fine, but I have had some rough patches. And the comments we got back, some of them said, “That was great to know that.” Others felt, “That was so depressing,” because they’re newly diagnosed and they come in hearing what sounds to them like horror stories. But to me it was like: This is fantastic; I’ve been able to beat these obstacles. So, it’s all a matter of perspective.

 

What advice do you give fellow WM patients?
 

 

I tell people to educate yourself about the disease and what the treatment options are. Understand your body. Understand the medical tests and results, and be a proactive patient, your own advocate in a sense. Understand that most of these oncologists or hematologists are busy treating a wide array of patients. There’s no way they know every detail about your disease. I tell people to get educated and keep the doctor and even the hospital on their toes. They’re human. They have your best interests at heart, but they’re worked to their stress limit and they make mistakes, so you have to watch out for yourself.

 

And I tell patients: Life goes on, no matter what your condition is. The important thing is to try to remember to enjoy things, knowing that you still have the same stresses, you still have to pay the bills, you still have to take care of the kids. But every once in a while there are still things that you should enjoy, that you shouldn’t pass up. I also tell them to take advantage of the IWMF resources.

 

Which are?

 

It is a nonprofit, almost entirely volunteer-run. What’s interesting to me about the organization is what they have achieved, which is creating this informational booklet for patients — and for doctors — about different tests, about manifestations of the disease, and making those available upon request for free.

 

There’s no underwriting. I guess you’d say it’s paid for by volunteers, by gifts from the patients and families themselves. It’s not a glamour disease. It’s not like we can put the picture of a kid on the cover and say: Help this kid stay alive. Parents and grandparents get it mostly, so it’s not sexy, it’s not glamorous, but it impacts a lot of lives: children, grandchildren.

 

Does the disease strike men and women equally?
 

 

Yes, it’s equally men and women, and predominantly Caucasian.

 

Have WM researchers made any headway in combating the disease?
 

Because it is so rare it’s hard for doctors to get the critical mass of numbers to make scientific judgments. The foundation also funds research. Some of the newer areas of research, directly because of our involvement, include creating a cell line, which is basically the collection of cells put in a test tube where they can run different types of tests against them. That didn’t exist before. Also, we have a mouse model now. They’ve injected the tumors into the mice and now they’ve been able to create a mouse with this particular type of disease, so they can run clinical tests. There’s no known genetic element to the disease; not yet.

 

Are there other developments that give you hope?
 

 

Yes. At IWMF we now have a patient database. We’re still fine-tuning it, but now we can do an average, like the average age that people were diagnosed. We have 200 enrolled now. There are not many rare diseases that have anything like that. We have an internationally renowned researcher on our board of trustees who is interested in it, WM and myeloma.

 

The object right now is to make WM a treatable chronic disease that you can live with. The researchers realize that cancer is a complex disease and a cure is a far-off target.

 

But the treatments have progressed. When I was first diagnosed they were saying seven years is the projected longevity; now, they’re saying around 11-15, primarily because of a neuro-class of drugs called monoclonal antibodies, which are new, developed in the last decade or so. But now there are other targeted therapies in development that may change the landscape again. And I think this resource — the IWMF — is clearly helping.

 

Article taken from University Times - http://www.utimes.pitt.edu URL to article: http://www.utimes.pitt.edu/?p=18596

 

Marguerite Regan, Ph.D. - Living With WM: Seventeen Years and Going Strong »
 

(this article first appeared in the April 2012 issue of The Torch)

 

Dr. Marguerite Regan, a resident of the Washington D.C. area, was diagnosed with WM in 1995 at the time when Arnold Smokler, the founder of the IWMF, had formed the original support group––meetings of a small number of WM patients in his home. Seventeen years later, Dr. Regan recounts the treatments that allowed her to continue her career and shares her practical wisdom with advice for those affected by a diagnosis of WM.

 

In January of 1995, I went to my internist with what I thought were gallbladder symptoms. She sent my blood to the lab for testing. At the lab they were unable to read the results. She took another test; the results also turned out to be unreadable. She talked about my case to a hematology colleague who thought he had an answer.

 

On February 9, 1995, I had a bone marrow biopsy. When I came out of the sedative, the hematologist informed me that I had Waldenstrom’s macroglobulinemia and I should rethink my life plans. At this time, WM had a five-year prognosis. I then went to the Johns Hopkins Hospital in Baltimore for a second opinion. Hopkins had a bone marrow transplant center and their hematologist suggested I “upload all my risk factors and go for a transplant.” At this time, I was on watch-and-wait and bone marrow transplants had a very high mortality rate and their utility for WM was questionable. After a discussion with my hematologist, I declined against the transplant. I also adopted a dog as a life-affirming decision, and he was a good companion during the treatment times.

 

I was given Arnold Smokler’s name as someone who had WM and had researched it. Arnie was getting a support group together, so I attended a couple of those at his home. There were probably 4 to 5 of us in the beginning. Arnie had compiled a wealth of information on WM and it was good to know I was not alone. Later Arnie and his wife moved to Florida, and Sarasota became the center for WM information.

 

Watch-and-wait ended in 1999, when I was treated with Cladribine (2CdA). I was in remission until summer 2004, when I had four sessions of Rituxan.  That remission lasted until May of 2010, when I again had four sessions of Rituxan.

 

During these past 17 years I have been active with my work (at Envision EMI) as the curriculum director designing simulations for elementary through college students and as the Dean of Academic Affairs involved with accreditation. I travelled to various cities in the United States giving presentations and also abroad to Mexico, Jamaica and Ireland, enjoying vacations. I plan to travel again this year. While I officially “retired” in January, 2011, I just signed a new consulting contract, good until 2014, for my company and am keeping busy at it.

 

Now I am faced with being treated once more for WM. I may seek a second opinion for the best combination of drugs, as well as discussing them with my hematologist-oncologist who has treated me for 17 years. Life with WM goes on. I also adopted another dog this month.

 

The most important lessons I learned during the last 17 years:

  • View WM as a treatable illness, not an end game.
  • Get a second or third opinion if necessary, and find the best doctor to treat you.
  • Be an advocate for yourself. Keep your records from diagnosis on.
  • Keep your job if you are able to. I worked fulltime during most treatments (at Lombardi Cancer Center of the Georgetown University Medical Center), and it was a welcome diversion.
  • Surround yourself with life-affirming people and stay away from naysayers.
  • Gather your support group, be they family, friends, colleagues, dogs, cats.
  • Divert your focus with creative projects and hobbies.
  • Research information but do not over-focus on WM.
  • Join a support group but remember that everyone may have different symptoms.
  • Maintain your sense of humor, an important asset in dealing with any disease and with healthcare providers.
  • Do not focus on “what-ifs” but stay in the present and seize the day.

Chris Moakley's Story of Hope - 2014 Cancer Support Community Online Posting »
 

Several years ago I was diagnosed with Waldenstrom’s Macroglobulinemia (a mouthful), a rare blood cancer in the lymphoma family, closely related to leukemia. Chances of getting it were estimated to be about 0.03/1,000,000. There is no known cure. With those odds, I’d rather have won the Powerball!

 

Though I was told that the cancer was indolent, or slow-growing, my expected survival was, at that time, estimated to be five years, give or take.

 

I’m not sure whether I received that as good news or bad news. It just became the fact of life for me, which I chose, for the most part, to ignore. My family, after all, was riddled with all sorts of cancer, and as much as this may sound strange, I thought I could live with it. My grandmother died from pancreatic cancer; my dad, lymphoma; and my mother—still with us at 80 years of age—has survived both Non-Hodgkin lymphoma and endometrial cancer.

 

This thought, though, did change when my younger sister was diagnosed with ovarian cancer. She had an 18-year-old son, leaving for college out of state, and a daughter, only four years old at the time of diagnosis. She suffered immensely, and had all the telltale signs of a cancer patient; losing her hair, losing weight, constantly sick to her stomach, and more. She suffered, after trying every possible treatment, for nearly four years, far longer than most. She died two years ago last June. If I could have changed places with her, I would have. I couldn’t.

 

How does this affect my story, you ask?

 

Because my cancer is indolent, and the treatment more modern, biologics like Rituxan and Velcade were used in my treatment plan. I did not lose weight; on the contrary, the steroids I received to help me tolerate my chemo added nearly 50 pounds to my already-somewhat-round waistline, weight I still have with me today. My hair has thinned, naturally, and I never lost hair due to treatment. I did however, suffer a side effect, known as PN, or peripheral neuropathy, something any diabetic would tell you is not fun.

 

Because time has elapsed from my initial diagnosis until now--and I’m still alive--people no longer look at me as a “cancer patient.” The story has grown “old,” and no longer topical. At work, I chose to share my story early on, as I knew I would be missing time for chemo several times a week, for several months. I had the support of my coworkers, but, as with most things, time passes, and people forget. The good news is that I must look good, if not fatter from the treatment, and no one sees me any longer as an active cancer patient, which I still am.

 

However, now my need for time off has become bothersome, and I often think that some of my coworkers wonder when I will die, and get it over with.

 

Statistically speaking, the longer I live, the longer I’m likely to live. This is good, no? I receive excellent treatment from the staff at two hospitals. I hope that more strides are made in my very rare disease, and that the years will keep adding up until I die of “natural” causes, with my cancer being a “chronic” condition and no longer a death sentence.

 

So what is moral of this story?

 

Take charge of your illness, surround yourself with those who stick with you for the long haul, and support you in good times and bad. Don’t be afraid to ask for help, and be grateful for what you receive. Educate yourself and your family. Do not fear, but fight.

 

Let your life become that shining beacon, an example for others who will follow. One day “cure” may replace the word “terminal.”

 

(Originally posted online at: http://www.cancersupportglv.org/stories/ChrisStory.asp - permission to post here provided by author.)

 

Jack Whelan - CancerToday magazine Fall 2013 Feature Article »
 

In Fall, 2013, CureToday magazine chose to focus their Survivor Profile on Jack Whelan, WM patient and cancer patient advocate, and his approach to life in the face of diagnosis with an incurable disease; in particular, Jack is a passionate booster for research, clinical trials, and research.

 

Read more interesting information about Jack and how he chooses to face living with WM at: CancerToday (Fall 2013)- "Betting on Science"

Armand's Video Testimonial About Living with WM and Attending an Ed Forum »
 

 

Armand - 2013