Radio show recap: Long term effects of myeloma therapy on our bodies

The Cure Panel Talk Radio shows and support groups are fantastic. The latest topic was the long term effects of myeloma therapy on our bodies. It was hosted by my fellow myeloma warriors Pat Killingsworth, Gary Petersen, and Sandy Hirsch.  To listen to the show, click here: http://curepanel.carefeed.net/event/rsvp/28/



Myeloma, while highly treatable, is tough to fight. It is time consuming and exhausting. I sometimes get tired with going to clinic every Friday. I get tired of getting my Thalidomide prescription filled every month. I get tired of filling one prescription after the next. I am tired of being fatigued. For example, I usually get my fatigue days on Sunday or Monday. But not this week. I felt great. But it hit me yesterday (Tuesday). I took two naps and it wasn't enough. It makes planning things difficult. And when I do make plans and I experience extreme fatigue, I push through it and carry on. But it is not fun and it takes the joy right out of the experience.

There are also real long term effects of these drugs. They cause secondary cancers, neuropathy, muscle loss, weight gain, and so much more. Many of the drugs are immune suppressing, so we are prone to illnesses and infections more than the general population. It takes courage and strength to fight this disease. Just a few days ago, I received a comment to an article I wrote for the www.myelomacrowd.org site, 10 Things You Shouldn't Say to a Cancer Survivor:

So pleased I read your article today. It has given me the courage I needed to keep fighting this horrible disease. I am on maintinence treatment for multiple myeloma. After going through all the intense treatment I feel Lost, still suffering effects of the trial treatment it seems never ending, but what would happen without it? Thank you so much and all my best wishes to you. Beryl Torn

It is a long battle, but at least we have many weapons at our disposal. Lucky? In many respects, yes. And grateful.

Lizzy in the news!

Interview: NBC News Salt Lake City

Today, Jenny and I were interviewed on NBC News at Noon in Salt Lake City. We discussed the www.myelomacrowd.org site and navigating myeloma treatment. It's always a pleasure to help promote this web site and help other myeloma survivors navigate this disease. Check it out here! www.ksl.com/?sid=28870218&nid=1194

Article: Huffington Post!

The Huffington Post carried my first article today! I'm so excited. What a great way to promote something I am passionate about: helping others survive divorce and, especially, how to survive an abusive husband, escape him, and rebuild life after. I've already received several private emails from those who found my blog from Huffington Post - hooray! Click here to read. But here's a teaser:

The 10 Best Things About Divorce

Posted: 02/27/2014 11:45 am EST Updated: 02/27/2014 11:59 am EST            

Print Article

Daly and Newton via Getty Images

                            

By Lizzy Smith for DivorcedMoms.com

 

I don’t know a single person who has gone through a divorce and thought it pleasurable. Divorce is tough, ugly, and acrimonious -- it pretty much sucks. But if you look closely enough, I’ll bet you can find many great things that emerged from your divorce. I know I can. And when I think about it and remind myself of the positives, thriving from my divorce seems a more accurate description of my experience (sort of). Hey, at least I learned to laugh again and have fun! Keep reading...

 

Radio Program: Cure Panel Talk Radio

Yesterday I participated in a fantastic radio show! Dr Rajkumar talked about many of the developments in the Myeloma field, including treatments, outcomes, and new drugs in the pipeline. You can hear a recap by clicking here or by pasting this in your browser: http://www.curepanel.carefeed.net/event/rsvp/19/.  

 

 

Two notable items I'd like to recap are:

 

1. Almost all the time, patients are treated for myeloma differently depending on who treats them. There are so many different ways to treat those with myeloma and many different approaches. There are approaches that are highly aggressive and more curative in their attempt versus maintaining the disease. And there are all these factors that help determine those decisions. But almost without fail, it depends where a patient is seen. It should be the other way around. Patients should, in a "perfect" world, know what their treatment options are and then determine how they would like to proceed. The challenge is that few patients know anything about their disease when diagnosed. And, once diagnosed, we they are overwhelmed and trust their oncologist. That was true for me, too. I believe the www.myelomacrowd.org site helps educate newly diagnosed patients in a comprehensive, easy-to-understand way. Maybe armed with better knowledge, those decisions won't be quite so difficult.

 

2. For those who are done with transplant and received a total response or a very good partial response, keeping them on maintenance therapy indefinitely is an approach some are taking. At Mayo, they keep patients on that maintenance therapy for no more than "about" two years because secondary cancers become more prevalent.

 

All interesting information!

Upcoming Cure Panel - Cure vs Control for Myeloma Patients

An excellent Cure Panel radio program is coming up and I won't miss it! I'm linking to my fellow myeloma warrior's write-up, Gary Petersen, for details. Read up and attend!

Cure vs. Control for Multiple Myeloma - Dr. Vincent Rajkumar, One of Mayo Clinic's Myeloma  "DREAM TEAM", Discusses This Vigorously Debated Subject

02/09/2014

2 Comments

 

Mark your calenders for what I believe will be one of the best Myeloma Cure Panel Broadcasts yet presented.  Dr. Vincent Rajkumar will be discussing the subject of Cure vs. Control for Multiple Myeloma at 5:00 pm EST on February 26th.  For instructions on how to listen or to ask your questions on air CLICK HERE.

The subject of CURE vs. CONTROL  for multiple myeloma has been a vigorously debated subject for a very long time.  Dr. Rajkumar had been a proponent of the Control Treatment Philosophy and ten years ago, when few if any people believed that myeloma was curable, control was overwhelmingly the majority view.  But maybe "The Times They Are A-Changin".  More and more doctors are now saying the big C word, CURE. 

 

Keep reading...

Cure Panel Talk Radio Recap: A Chat with MMRF

It's been awhile since I've written about Myeloma. Instead, I've been talking more to the divorced community. Sometimes, I get so tired of talking about Myeloma that I just need a break. It's always heavily on my mind, though. How can it not be? Everything I do, say, eat and breathe has something to do with Myeloma.

So I'll start writing about Myeloma more in the near future. After all, next week, I'll have a very exciting announcement. I've been working extensively with my friend Jenny, fellow Myeloma warrior and a champion of Myeloma causes. She is my inspiration. Anyway, I'll fill you in on the details in a few days but I can hardly wait.

That said, the latest Cure Panel Talk Show is ready for your listening On the show, the Cure Panel talked to the Anne Quinn Young of the MMRF, which has some interesting and exciting news to share about the latest in MMRF initiatives, Community Gateway, big data and more. To listen in, click here:

Two fabulous radio shows! Mpatient Radio (new ways of treating myeloma); and Cure Panel (nutrition & supplements during cancer treatment & beyond)

Last Friday, I participated in two fantastic myeloma radio shows.

The first was mpatient radio, topic: What can you do when your myeloma medication is no longer working? Dr Jatin Shaw described the best new approaches to overcome drug resistance and a host of treatment alternatives.

To read the transcripts or listen to a rebroadcast of the show itself, click here. After listening in and asking my own question, I felt incredibly optimistic for the future of myeloma. We have a long road but I do believe the future is bright. There are so many ways to treat this disease with many more treatments in the pipeline. That is all good news in the fight against myeloma.



The second radio show was Cure Panel's Talk Radio. The topic was nutrition and supplements during cancer treatment and beyond. I could have listened to this segment for another few hours. To listen to the re-broadcast, click here. I am a huge fan of doing my part (beyond taking lots and lots and lots of drugs given to me by my oncologists), which means eating right, taking the right supplements, managing stress levels with Bikram yoga, massage and meditation, using essential oils, and anything else that might work. There are so many "alternative" approaches that it's really super hard to find credible options to try.

If I remember correctly (and chemo brain often fails me), there are the essential take-aways:

The No's
1. No red meat
2. No dairy
3. No sugar

The Yes'
1. Exercise 30 minutes a day
2. Manage stress levels (yoga and meditation and writing/blogging are good sources)
3. Supplements are good in the right doses. Turmeric seems to be a good things to take for those fighting many of the cancers. I am taking turmeric supplements. My oncology centers discourages but everything I've read seems to be a good option. So I prayed about it and swallow a supplement a day, with the exception of the day I get Velcade.
4. Cold water fish is good, like salmon, cod and others

So much more that I can't remember, so listen up- I think you'll love to learn more.