3 posts tagged “multiple myeloma awareness”

“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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