8 posts tagged “multiple myeloma”

Multiple myeloma community members form “forever friends” by taking it offline

Posted March 23rd, 2017 by

What started as a simple chat between friends in the forum evolved into something much bigger. Members from the multiple myeloma community on PatientsLikeMe decided to take their friendship out of the forums and into real life. Marcia (marcia_holman), Dennis (DennisIvan), Paul (paulatsea) and Lee (Dapylil), along with spouses and grandchildren, got together and discussed life with multiple myeloma, their “new normal” and shared the highs and lows of the journey together.

Read on to find out how they organized the meetup and what it’s like to catch up in person with friends you’ve made on PatientsLikeMe. Like Dennis suggests: “The journey between what you once were and who you are now becoming is where the dance of life really takes place.”

What led you to organizing these in person meet-ups?

paulatsea: Over time I noted that there were a number of us that were within about 40 miles of each other, thought it would be fun to meet so tossed out the idea and the others liked it too so we made it happen!

Marcia_holman: It was an idea thrown out by Paul to start with. Paul, Dennis and I are regulars on the thread, we and a few others who are from out of state chat there and have all become good friends. Of our group I believe Paul has been on PatientsLIkeMe the longest. Anyway, Dennis and I thought Paul’s idea was great. We arranged the date, time and place and put it out for other members. Only the three of us with spouses and guests came out. This time when I heard Lee was going to be out here visiting, Lee and I have gotten to know each other on PatientsLikeMe, he had mentioned he would like to meet the others from our group. So I contacted Paul and Dennis and they were really excited to meet Lee from Kentucky, too. I chose the date and it worked for everyone (I’m having surgery on February 28th so my time was limited). Then I asked Paul to find us a place. His choice of Polly’s Pies worked really well. I was really hoping since we have had so many newcomers and many from So Cal that we would get a good response. I announced it on the home page and on the thread but no takers.

What’s it been like connecting with other PatientsLikeMe members in person?

Dapylil: It was wonderful! I am already a member of a multiple myeloma support group in Louisville, KY, but these friends have been around longer, and I already felt a stronger bond. We had been in this fight together. A bonus to meeting with these folk is that we share a common “language.” We could speak shorthand about what we had experienced. There was/is a built in understanding of highs and lows of this journey “through the valley of the shadows.” They understood my pain without having to explain it.

DennisIvan: It seems actually like instant connectivity. There are no awkward meeting moments like when you are meeting someone new. You feel the warmth of an old friend and begin talking like old friends from the get go. I experienced this feeling at both meetings when meeting these folks even for the first time.

Marcia_holman: It has been a delight to get together and meet someone you have just been corresponding with on line. We can put a face to them. You get to know their personalities and they become “forever friends!”

When you all catch up, what do you talk about?

Paulatsea: We talk about our “new normal”, some of the things we can do, mourn some of the losses of things we struggle or just can’t do anymore.

Marcia_holman: Everything. We talk about how we are currently doing and of course our treatments and our myeloma journeys, but we also talk about our life before multiple myeloma and we talk about our new normal and how it has changed us, good and bad! We still have dreams we want to fulfill and hope! I brought my granddaughter, who is 13 years old, and she said she had fun talking with everyone about school and the new core curriculum. Everyone included her in the group.

Dapylil: I was interested in their stories: “Our stories disclose in a general way what we were like, what happened, and what we are like now.” I wasn’t so much curious about treatment. My focus is what had changed about them mentally and spiritually.

Are the meet-ups just for people living in your area? Or have they come from other places to join in?

Dapylil: I attended this one while visiting in California. I’m from Kentucky. I joined the already established group in Louisville first to hear what others were doing medically for their condition. I’ve stayed in that group for the same reason that I wanted to meet my California friends – Tell me a story!

Paulatsea: I came about 30 miles, open invite to anyone in the group, if they live in the area or visiting the area, all are welcome.

DennisIvan: We welcome multiple myeloma patients and or caregivers from anywhere who are willing to join us. This week we welcomed Lee who came all the way to Southern California from Kentucky. It was a delight to have Lee with his South Carolina (birth state) charm and his wicked sense of humor. My wife and I drove down to Cerritos from our home in Santa Clarita – a trip of about 50 miles and one hour. Traffic in California is lighter on Sunday’s so it is a good meeting day.

If there are other communities that like this idea, what advice would you give them to organize something like this?

 paulatsea: We chose a family type restaurant with a wide variety of foods – meat, fish, salads, vegetarian, – near freeways, make it easy for people to get to and find it. We picked a date and time approximately a month in advance.

Marcia_holman: The hardest part is getting more people to come. I always suggest they bring someone with them. I thought this would make them feel more comfortable meeting people they have only corresponded with online. 

Is there anything else you’d like to share about these meet-ups?

Dapylil: I sincerely encourage not only meeting people through websites similar to PatientsLikeMe and especially PatientsLikeMe! If possible, form your own group. Be open to sharing your experience, strength and hope that you have gained in your journey. Barbara De Angelis wrote: “The journey between what you once were and who you are now becoming is where the dance of life really takes place.” Come and find many dance partners.

DennisIvan: A disease like multiple myeloma makes it easy for a patient to become isolated through circumstances or perhaps their own choice. PatientsLikeMe helps patients seek out others through online contact. An in-person meeting carries it a step further and helps us step out of our inner turmoil to grab some rejuvenated socialization specifically targeted to our needs.

Marcia_holman: They really are a lot of fun. You form “forever” friends. You are very comfortable with each other. It’s like having known them all your life!

 

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“Each day is different and you do what you can” — Member Rick shares his story for Myeloma Action Month

Posted March 25th, 2016 by

Rick on vacation in Hawaii

A few weeks ago, we shared Marcia’s story for Myeloma Action Month. Today, we’re introducing Rick (ricktowner), another member of the multiple myeloma community.

Before he was diagnosed in 2012, Rick and his wife led active lives volunteering in private, state and federal parks. Now in remission, he still travels when he can and rides a recumbent trike for exercise.

Below, Rick describes the difficult process of getting diagnosed, what his “new normal” is like, and how acupuncture has helped him manage his pain.

Tell us a little about yourself. What do you do to stay busy and engaged?

I am 68 years old, retired and once in remission, we returned to traveling in our RV during the summer months. We hope to return to volunteering in national and state parks, especially as interpretative hosts at lighthouses. We also like to take a cruise each year. I play table tennis twice a week at our senior center and also do volunteer work there. I have purchased a recumbent trike that I can ride with out falling (doctors said falling would be a disaster due to the amount of bone damage I have) to help with exercising. I had to do something different as snow skiing was now no longer an exercise option for me.

How would you describe living with multiple myeloma (MM) to someone who’s never heard of it?

Discovering you have MM can take some time as most primary doctors are unaware that back pain (bone pain) and anemia are symptoms of MM. From my first symptoms to diagnosis it took six months and then it was because my L1 vertebrae fractured and I was in excruciating pain. It takes a specific blood test looking for that M protein spike to confirm MM, because MRIs, CAT and PET scans show no specific tumor causing the many lesions one may have.

At the beginning, treatment and doctor appointments take up the majority of your daily time. Pain is with you constantly, usually from bone damage to the spine, as well as fatigue. You definitely need a willing caretaker as you probably can’t do what you use to do to take care of yourself. I didn’t drive for one year because of chemo brain and bone pain. Living with MM after remission is what my wife and I call the “new normal.” Due to bone damage and maintenance drugs to help you stay in remission, you never return to the “normal you” again. Fatigue is a daily thing you fight with exercise and if you are on Revlimid for maintenance, you can count on individual days of diarrhea which keep you close to home. You learn that each day is different and you do what you can according to how you feel.

Rick at the Carson Tahoe Cancer Center in Carson City, NV

You’ve been in remission since 2012 — what has your treatment experience been like?

I started out on a three-drug cocktail, Revlimid, Velcade and Dexamethasone for six months prior to remission. I was one of the lucky ones that this worked great for me. I also had 15 days of radiation to kill some of the major lesions on my spine and pelvis. I am now on 10 mg of Revlimid, 21 days on, seven days off for maintenance. At a recent check up at Huntsman Cancer Institute in Salt Lake City, UT, I was declared in complete remission by the oncologist I saw there. I still do blood tests every three months with my local oncologist and check in at Huntsman Cancer Institute once a year. I have found all medical practitioners I have come in contact with to be very caring about me as an individual which has helped immensely in my attitude about my condition and what I can do to help myself.

You’ve spoken positively about acupuncture therapy. How has it helped your multiple myeloma?

I have four spinal compression fractures, kyphosis of the T4 & T5 and two areas of spinal stenosis. I was on Fentanyl patches I had to change every 48 hours for pain and Percocet for breakout pain. Being on the Fentanyl patches was very limiting to what I could do and how long I could be away from home. So I decided to try acupuncture. I started out with two treatments a day for 15 days while I weaned myself from the Fentanyl. I then did treatment twice a week for one year to get my body totally pain free. I now do one treatment every two weeks to keep the pain under control. If I go longer than three weeks without treatment the pain starts to return. However, it is easier to find an OMD (Oriental Medicine Doctor) acupuncturist than to try and get narcotics when I am travelling in my RV or taking a cruise for 15 days. Acupuncture has greatly improved my quality of life.

What has your experience been on PatientsLikeMe? What benefits have you seen from tracking your symptoms and quality of life?

All cancer patients should look for some kind of support group. PatientsLikeMe is one of mine. It is encouraging to learn how others with MM are doing, what their treatments are and how they are coping day to day. The daily “Today I feel” is a great way to chronicle how you are doing daily so you can see trends. Quality of Life and LAB tracking also helps in showing trends on how you are progressing in the fight against MM. The “Today I Feel” area helps you get in touch with others and others get in touch with you. This allows you to share with others who have the same condition you do and helps you understand that what you are going through is normal for MM patients. I enjoy giving and receiving encouragement from others on PatientsLikeMe. I also like the fact that what I post is used in research to help other MM patients.

 

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“It does not define me!” Member Marcia shares her story for Myeloma Action Month

Posted March 11th, 2016 by

March is Myeloma Action Month, a time to raise awareness for the second most common blood cancer that affects 750,000 people worldwide — and over 2,500 PatientsLikeMe members. One of those members is Marcia (marcia_holman), who was given six months to live when she was diagnosed. Fifteen years later, Marcia sat down with us to talk about her experience, share some advice for newly diagnosed patients and remind everyone that “multiple myeloma made me a patient but it didn’t take away who I already was.” Here’s what she had to say…

You were diagnosed with multiple myeloma in 2001. In your opinion, how has the treatment options and understanding of the condition evolved over the last 15 years?

When I was first diagnosed with stage #3 multiple myeloma, I had 90% myeloma cells. I was very sick with pneumonia, broken ribs from coughing and kidney failure. City of Hope hospital in Duarte, California, treated me aggressively with four major chemo drugs. I was in the hospital the first time for 30 days then out for one week. This went on each month for six months. I was put on Thalidomide and was gradually increased to a maximum dose of 300 mg. I was also taking dexamethasone. At this time this was the only drug that they were treating multiple myeloma with. Since then many more drugs have been released to treat myeloma. Now they are finding that combinations of two or three of these drugs work well. This last year I believe there were four new drugs approved and of course as they do this research they are understanding this disease more. They now realize myeloma isn’t just one disease but several different diseases and treatments vary. What works for one patient may not work for another. What is very exciting for me is the work they are doing with immunotherapy, where they take out your T cells and engineer them in a lab to recognize a certain marker on the myeloma cells. They are then introduced back into the patient where it kills myeloma cells. I am very excited about what is coming in 2016. I believe it will be a great year for multiple myeloma patients and maybe even a cure. I am always hopeful.

You joined PatientsLikeMe back in June 2015, and already have been very active on the site, even rallying other members to take part in our #24DaysOfGiving campaign in December. What keeps you coming back?

When I found the PatientsLikeMe site I was very excited to have a chance to talk with others that are going down this complicated journey with me. I found support and comfort from the myeloma patients. I was able to learn from their experiences and them from mine. I was able to give them hope as I have been a 15-year survivor. They are my myeloma family! I also wanted a way to be useful. I am a registered nurse and not able to work any longer but I long to. I miss caring for people! I feel this has given me an opportunity to give back, pay it forward, for all the support and care I have been given. I feel good when I can help others. That’s who I am! The December #24DaysOfGiving I thought was such a good idea. Anything to help research or help the myeloma community benefits us all. Thank you for the opportunity!

Do you have any advice for newly diagnosed patients?

My advice to a newly diagnosed patient is: 1. Do not panic! Take one day at a time! 2. The best thing you can do is educate yourself. There are several websites, such as, MMRF, IMF, and Myeloma Central that are terrific with firsthand knowledge of the latest in treatments. 3. Talk with your doctors, find out what your options are. Make yourself part of the decision making. Be a team member with your medical team. 4. If you have a faith, pray and ask for prayers. You are in God’s hands! 5. Don’t be afraid to ask for help. It was one of the hardest things I had to learn to do. Just remember your loved ones and friends feel helpless and want to be able to do something so you are being a blessing to them! 6. Connect with others going down this journey with you. You are not alone! You can be a blessing to each other!

What in your life makes you more than your condition?

I am many things! Before I became a patient I was a wife, a mother, a sister, a friend and a registered nurse. After diagnosis I was still a mother of five beautiful children, a sister, a friend, a registered nurse and a grandmother to 11 wonderful grandkids. Multiple myeloma made me a patient but it didn’t take away who I already was. It does not define me! It is an important part of me but I am so much more and wear many other hats! I am a woman and can multitask!

 

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MARCHing together for myeloma awareness

Posted March 20th, 2015 by

There’s a lot of awareness going on in March. So far, we’ve learned more about sleep conditions (how pain can increase sleep debt), multiple sclerosis (the myths and facts) and brain injury (how it might be more common than you think). Today, we’re shining a spotlight on myeloma, a type of blood cancer that affects more than 750,000 people worldwide.1

You can add to your knowledge during Myeloma Awareness Month (MAM), and educate your friends and family about the condition. Awareness is contagious.

Here are the basics about myeloma:

  • Myeloma is the second most common blood cancer in the world
  • It begins in plasma cells (white blood cells that are part of the immune system) and eventually collects in bone marrow
  • When myeloma collects in more than one location in the body, it is called “multiple myeloma”
  • Common symptoms include bone pain, anemia and extreme fatigue

It’s estimated that over 24,000 new cases of myeloma were diagnosed in 2014.2 For these people and everyone living with myeloma, here’s how you can get involved in raising awareness:

As the IMF says, let’s MARCH together for myeloma awareness this month. If you’ve been diagnosed, read about PatientsLikeMe member AbeSapien’s journey with multiple myeloma in his interview. And don’t hesitate to reach out to the more than 1,600 PatientsLikeMe members living with multiple myeloma.

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1 http://mam.myeloma.org/educate/

2 http://seer.cancer.gov/statfacts/html/mulmy.html


2014 recap – a year of sharing in the PatientsLikeMe community

Posted December 23rd, 2014 by

Another year has come and gone here at PatientsLikeMe, and as we started to look back at who’s shared their experiences, we were quite simply amazed. More than 30 members living with 9 different conditions opened up for a blog interview in 2014. But that’s just the start. Others have shared about their health journeys in short videos and even posted about their favorite food recipes.

A heartfelt thanks to everyone who shared their experiences this year – the PatientsLikeMe community is continuing to change healthcare for good, and together, we can help each other live better as we move into 2015.

Team of Advisors
In September, we announced the first-ever PatientsLikeMe Team of Advisors, a group of 14 members that will work with us this year on research-related initiatives. They’ve been giving regular feedback about how PatientsLikeMe research can be even more helpful, including creating a “guide” that highlights new standards for researchers to better engage with patients. We introduced everyone to three so far, and look forward to highlighting the rest of team in 2015.

  • Meet Becky – Becky is a former family nurse practitioner, and she’s a medically retired flight nurse who is living with epilepsy and three years out of treatment for breast cancer.
  • Meet Lisa – Lisa was diagnosed with Parkinson’s disease (PD) in 2008, and just recently stopped working as a full-time executive due to non-motor PD symptoms like loss of function, mental fatigue and daytime insomnolence. Her daughter was just married in June.
  • Meet Dana – Dana is a poet and screenplay writer living in New Jersey and a very active member of the mental health and behavior forum. She’s living with bipolar II, and she’s very passionate about fighting the stigma of mental illness.

The Patient Voice
Five members shared about their health journeys in short video vignettes.

  • Garth – After Garth was diagnosed with cancer, he made a promise to his daughter Emma: he would write 826 napkin notes so she had one each day in her lunch until she graduated high school.
  • Letitia – has been experiencing seizures since she was ten years old, and she turned to others living with epilepsy on PatientsLikeMe.
  • Bryan – Bryan passed away earlier in 2014, but his memory lives on through the data he shared about idiopathic pulmonary fibrosis. He was also an inaugural member of the Team of Advisors.
  • Becca – Becca shared her experiences with fibromyalgia and how she appreciates her support on PatientsLikeMe.
  • Ed – Ed spoke about his experiences with Parkinson’s disease and why he thinks it’s all a group effort.

Patient interviews
More than 30 members living with 9 different conditions shared their stories in blog interviews.

Members living with PTSD:

  • David Jurado spoke in a Veteran’s podcast about returning home and life after serving
  • Lucas shared about recurring nightmares, insomnia and quitting alcohol
  • Jess talked about living with TBI and her invisible symptoms
  • Jennifer shared about coping with triggers and leaning on her PatientsLikeMe community

Member living with Bipolar:

  • Eleanor wrote a three-part series about her life with Bipolar II – part 1, part 2, part 3

Members living with MS:

  • Fred takes you on a visual journey through his daily life with MS
  • Anna shared about the benefits of a motorized scooter, and a personal poem
  • Ajcoia, Special1, and CKBeagle shared how they raise awareness through PatientsLikeMeInMotion™
  • Nola and Gary spoke in a Podcast on how a PatientsLikeMe connection led to a new bathroom
  • Tam takes you into a day with the private, invisible pain of MS
  • Debbie shared what it’s like to be a mom and blogger living with MS
  • Shep spoke about keeping his sense of humor through his journey with MS
  • Kim shared about her fundraising efforts through PatientsLikeMeInMotion™
  • Jazz1982 shared how she eliminates the stigma surrounding MS
  • Starla talked about MS awareness and the simple pleasure of riding a motorcycle

Members living with Idiopathic pulmonary fibrosis:

Members living with Parkinson’s disease:

  • Dropsies shared about her frustrating Parkinson’s diagnosis experience and how diabetes might impact her future eating habits

Members living with ALS:

  • Steve shared the story behind his film, “My Motor Neuron Disease Made Easier”
  • Steven shared how technology allows him to participate in many events
  • Steve shared about creating the Steve Saling ALS residence and dealing with paramedics
  • Steve told why he participated in the Ice Bucket Challenge
  • Dee revealed her tough decision to insert a feeding tube
  • John shared about his cross-country road trip with his dog, Molly

Members living with lung cancer:

  • Vickie shared about her reaction to getting diagnosed, the anxiety-filled months leading up to surgery and what recovery was like post-operation
  • Phil shared the reaction she had after her blunt diagnosis, her treatment options and her son’s new tattoo

Members living with multiple myeloma:

  • AbeSapien shared about his diagnosis experience with myeloma, the economic effects of his condition and his passion for horseback riding

Caregiver for a son living with AKU:

  • Alycia and Nate shared Alycia’s role and philosophy as caregiver to young Nate, who is living with AKU

Food for Thought
Many members shared their recipes and diet-related advice on the forums in 2014.

  • April – first edition, and what you’re making for dinner
  • May – nutrition questions and the primal blueprint
  • June – getting sleepy after steak and managing diet
  • July – chocolate edition
  • August – losing weight and subbing carbs
  • September – fall weather and autumn recipes
  • Dropsies – shared her special diabetes recipes for Diabetes Awareness Month

Patients as Partners
More than 6,000 members answered questions about their health and gave feedback on the PatientsLikeMe Open Research Exchange (ORE) platform. ORE gives patients the chance to not only check an answer box, but also share their opinion about each question in a researcher’s health measure. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

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Every three minutes

Posted September 29th, 2014 by

That’s how often a person is diagnosed with blood cancer in the United States, according to the Leukemia and Lymphoma Society (LLS). This means that 156,420 Americans will be diagnosed in 2014, and hundreds of thousands more worldwide.

But that’s just the start of what everyone can learn during National Blood Cancer Awareness Month. Check out the Lymphoma Research Foundation’s (LRF) video below:

Did you know there are actually three main types of blood cancer? Each affects a different kind of cell in your body and can vary greatly:1

Leukemia is found in your actual blood and bone marrow, and it causes abnormal white blood cells to form and disrupt the normal immune system.

Lymphoma affects your lymph nodes and lymphatic organs, which are the parts of the immune system that remove excess fluid from the body and produce special white blood cells.

Myeloma is the cancer that is limited to plasma cells, which are cells in your blood that help produce antibodies and fight disease.

There are many subtypes of these three categories, including conditions like chronic lymphocytic leukemia, non-Hodgkin’s lymphoma and multiple myeloma, to name a few common ones. This month, get involved by participating in a Lymphomaton (a fundraising and awareness walk), finding a LRF chapter or even posting awareness flyers and posters on Facebook and other social media outlets.

 

Don’t forget to check out Bob’s blog interview – he’s a PatientsLikeMe member who shared about his life after being diagnosed with multiple myeloma and how he’s learned to manage his condition.

 

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1 http://www.hematology.org/Patients/Cancers/


“Myeloma has not affected my day-to-day life” – PatientsLikeMe member AbeSapien shares his experience during Multiple Myeloma Awareness Month

Posted March 16th, 2014 by


March is Multiple Myeloma Awareness Month, and to keep the awareness going strong, we’re sharing our recent interview with PatientsLikeMe myeloma community member Bob, also known as AbeSapien. The happily-married, long-time data processing expert spoke about his diagnosis experience with myeloma, the economic effects of his condition and his passion for horseback riding.

 

 

Your PatientsLikeMe username, AbeSapien, is a reference to a comic book character – can you tell us a little about the meaning behind it? 

The movie Hellboy had been out fairly recently. It’s one of about three that we throw in to watch regularly (the others being Van Helsing and League of Extraordinary Gentlemen). The character Abe Sapien fits my personality as a straight man, although I’m not above throwing in a dose of sarcasm when the situation calls for it.

Multiple myeloma can be challenging to diagnosis – what was your diagnostic experience like? When did you first start experiencing symptoms?

I actually did not exhibit any symptoms until just before I started treatment. I was diagnosed with MGUS (Multiple Gammopathy of Undetermined Significance) in 2001 when a blood test taken during an annual physical showed above normal levels of the IgG protein. At that point my condition was only monitored via periodic blood tests.

I changed doctors in 2010 and my diagnosis was upgraded to Multiple Myeloma at that time. We continued to monitor my condition through periodic blood tests but performed no other treatment until December of 2012. At that time I suffered an incidence of blindness in my right eye. It was determined that the blindness (which passed off) was cause by a blockage of the central vein in the eye as a consequence of the thickening of my blood due to the high IGg levels. I started treatment at that time. That was the only real symptom I experienced as a consequence of the disease.

What’s it like living with multiple myeloma day-to-day?

Other than that first symptom of temporary blindness, Multiple Myeloma has not affected my day-to-day life. Treatment, on the other hand, required a full 12 weeks of disability, I still don’t have my full strength or stamina back from the treatment (Autologous Stem Cell Transplant). It’s a great diet aid – I lost 30 pounds in the month I was in the hospital.

The most major effect the disease for us has had is economic.  I can no longer obtain life insurance or long term care insurance at any price, and have not been able to since my original MGUS diagnosis.  It is fortunate that I have great health insurance through the company I work for.  And, absent that, at least under the Affordable Care Act I can no longer be denied health insurance due to preexisting conditions.

On your PatientsLikeMe profile, you mention horseback riding as one of your passions – can you share more about that with the community?

My wife and I got into horseback riding in our mid-thirties.  We both owned our own horses and showed in Hunter / Jumper (English) shows in our area.  Later we purchased a training stable where we taught riding to between 200 and 250 students a week, most through five of the local park districts.  That was one of the best times we had because the kids were great.  I also taught the adult riding classes, which were always a hoot.

When I was diagnosed, we decided we had to put the stable up for sale.  I had no clear idea how my condition would progress and we didn’t want end up having to deal with my treatment on top of all the work running the stable.  As it was, I didn’t start treatment until another seven years after we sold the stable, but we had no way to know that, or to know how long it would take to sell the stable.


Tell one person about multiple myeloma in March

Posted March 6th, 2014 by

There’s a lot of healthcare awareness going on in March, everything from multiple sclerosis and brain disease to diabetes. March is also known as Multiple Myeloma Awareness Month, and from now until April, the International Myeloma Foundation (IMF) is getting the word out with their “Tell One Person” campaign. And that’s really all you have to do, just tell one person about the facts of multiple myeloma.

So what are the facts?

  • Multiple myeloma, often referred to as myeloma, is the second most common blood cancer worldwide.
  • There are over 100,000 people currently living in the U.S. with multiple myeloma, and around 20,000 new patients will be diagnosed every year1
  • “Multiple” is used because it is a cancer of the plasma cells and can occur at multiple sites in the body
  • Although several treatment options are available, there is unfortunately no cure

This month, there are plenty of ways to focus on multiple myeloma, especially how it affects patients on a day-to-day basis. You can post the IMF’s flyer in your office or a public place, change your Facebook profile picture to this awareness ribbon and ask your town or organization to officially declare March Multiple Myeloma Awareness Month.

If you’ve been diagnosed, you can connect with the more than 400 members of PatientsLikeMe who are living with myeloma. Check out the most recent forum thread, introduce yourself to the community, and learn more about each other’s personal health experiences.


1 http://info.thebindingsite.com/march-is-myeloma-awareness-month