In September of 2016, I was diagnosed with Smoldering Multiple Myeloma. For those of you who know about this type of cancer, you already understand the issues and challenges.
For those, like myself, who really didn’t know anything about this type of cancer, my life started to revolve around 3 month checkups to see if the cancer was changing and the constant voice in your head that kept saying, “shit, now what?”
After the initial shock and emotional downs of what I was told, I started what I am sure most people who get this type of news do, hit the internet to find out what this cancer is all about and how will this impact my life, now and in the future.
The first thing that I read was that there was no cure.
Ok, that just about made me stop reading right there. Again, shit, now what?
Over the next 4-5 months, I was able to brighten my mood and thoughts upon reading and hearing from Myeloma patients who were 20 year survivors and even longer. I decided that I did have more of a future than was initially lead to believe, and have now updated my future status to “work in progress, with minor detours!”
I plan on using this blog to share my story so others that find themselves in the same situation can understand that this diagnosis doesn’t have to be a death sentence but instead a chance to step back from the hustle and bustle of life and slow things down and enjoy what you can control. Time with friends or family, taking the time to do the things you enjoy, and to stop worrying about all the other crap going on in life that you worried about before your diagnosis.
So, this is me…. so far.
For those of us with MM in whatever stage, your number one website for up-to-date info and resources is International Myeloma Foundation.
My chapter in Mpls recently sent out info on a webinar that they held, and I will include a link to the slide show deck for you to view, but I am told it is also on the website.
In today’s COVID-19 climate, we all need to be extra careful and follow the guidelines of HEALTH PROFESSIONALS and not politicians. Do what is best for you and your family based on your diagnosis, that is the number one priority.
Stay safe out there, we all are relying on you to do so!
It has been a very long time since I last posted, but now is a great time to share some info for those of us on the MM journey and how to protect ourselves and stay up on the COVID-19 threat.
Please follow the link and stay safe out there everyone.
The coronavirus is on the minds of global citizens and all myeloma patients. Dr. Joshua Richter shares an incredible amount of information for myeloma patients to navigate their care in these uncertain times. He shares drugs patients may want to ask their doctors about, considerations for stem cell transplant, the status of some myeloma clinical trials, tradeoffs of using IVIG, and potential therapies being used to treat the coronavirus. This is a must-read show to learn how the coronavirus is affecting myeloma patients and how they can be prepared.
READ IT ALL HERE >>
The search for new drugs that control the continuous relapses of multiple myeloma is still required. Here, we report for the first time the potent antimyeloma activity of amiloride, an old potassium-sparing diuretic approved for the treatment of hypertension and edema due to heart failure.
Read the Full Report
Is Sleep Apnea a way to a cure or treatment for MM?
“Sleep apnea can drive the development of aggressive multiple myeloma in mice resistant to the cancer, a study found, suggesting that the sleep disorder is a modifiable risk factor for this disease.”
Read it all here >
As another year comes and goes, having a diagnosis of Smoldering Multiple Myeloma makes it a bit challenging as you don’t know whether to be happy that you are a year older or that your cancer has not started acting up.
Wow, that is a depressing sentence.
To be true, after almost three years since my doctor told me what was up, I have settled into the routine of “life as normal” since my cancer has remained in the same state… active but not aggressive.
I can say that I don’t think about it day in and day out unless I read something about Myeloma or my three month blood work notice comes up in iCal. I have learned to live with it and am not letting it dominate my thought process.
That’s not to say that sometimes I get hit with a wave of “Oh my God, I have cancer”, cuz I do, but not very often.
At the end of the day, I know what I have so that is power, I have support of doctors and family who are cheering me on every day, and I have done all that I can do to be a healthy person with or without cancer. Really, that is all any of us can do.
So, there it is. Another year living with a cancer diagnosis. Another year of maybe this year, but also another year of live as normal or as normal as can be. That is pretty good and if 59 comes the same way, I will consider that a win and just copy and paste this post then.
Hugs to all,
The expansion part of a Phase 1/2 clinical trial testing tinostamustine in relapsed or refractory blood cancers has begun treating the first patient.
READ THE ARTICLE HERE
Venclexta trial deaths force AbbVie, Roche to stop recruiting myeloma patients
Deaths Halt Drug Trials – READ MORE
Johnson & Johnson’s Darzalex is already on track to nab a second multiple myeloma nod in newly diagnosed patients in the U.S., but its journey with England’s cost watchdog hasn’t been so smooth.
Read it all here…