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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