9 posts tagged “multiple myeloma”

From preclinical to approval: How clinical trials bring new treatments to market

Posted September 15th, 2017 by

Often we hear of new treatments becoming available, but have you ever wondered what each new treatment had to go through to get approved by a regulatory body like the FDA? Before a new treatment is approved for commercialization, it needs to go through a meticulous trial process to prove a number of things: Is the drug safe? What are the potential side effects? Does the drug do what it’s supposed to do? All of these questions and more need to be answered before a drug can be considered for approval by the FDA, so that’s where clinical trials come in. Here’s a breakdown of what’s involved in the drug development process, from preclinical through to commercialization and post-approval monitoring.

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How can I participate in a clinical trial or find out more?

  • You can learn more about research and clinical trials by joining or logging into PatientsLikeMe and clicking on the Research tab
  • Use the PatientsLikeMe Clinical Trial Finder to search for trials that could be a good fit for you
  • Check in with local associations and hospitals to see if they are recruiting for any trials
  • Talk to your healthcare provider/clinician to see if there are opportunities they are aware of and how you can participate
  • If you’re a member of PatientsLikeMe, make sure you consistently update your profile so we can let you know about research survey opportunities that are right for you

Interested in finding out more about how PatientsLikeMe members are impacting change in the clinical trial sphere? Check out these stories:

It’s Clinical Trials Day, and patients are driving change

“My expertise is as a person with Parkinson’s”: Member Lisa brings the patient voice to drug development

Bringing the patient voice to clinical trials

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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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