Apr 29th, 2016 by Lori Puente
Take Action: Let CMS Know that ICER Recommendations are Bad for Myeloma Patients
IMF has set up a great response with talking points and necessary links for you, the patient, the family, the caregiver, the nurse, the doctor, to make your voice heard on the ICER recommendations as well as how it will specifically be impacting Medicare patient’s coverage.
Please, wander over, it’s short and sweet. We need to have a strong voice.
IMF Action Center Link
My Previous Post with additional links at the bottom
Apr 27th, 2016 by Lori Puente
“Hidden Agenda: an often duplicitously undisclosed plan or motive.”
A recent “report” by a group called ICER (Institute for Clinical and Economic Review) has issued a 139 page “DRAFT” of a report attempting to evaluate Multiple Myeloma, it’s treatment protocols, drug cost comparisons and QALY (Quality-Adjusted Life Year see: Wikipedia Definition).
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Mar 27th, 2016 by Lori Puente
“Success is the sum of small efforts, repeated day in and day out.” – Robert Collier
Well, it’s Easter Sunday and we are at the infusion center getting the second darzalex infusion, and honestly, I couldn’t be happier about it. Two down before he leaves for his business trip tomorrow morning and a short visit with his Mom and Dad before he comes home. Continue Reading »
Mar 21st, 2016 by Lori Puente
Tomorrow Dave begins his new therapy with Darzalex. We have to premed with Allegra, Singular, Benadryl and Tylenol. Dave is nervous, understandably so. Basically what I’ve learned is this side effects are infusion related. That means that the infusion itself is where the side effects will present. Other than that, he should be fine. So why up I up at 3:30 in the morning? I’m obviously worried. Despite everything I’ve read I’m worried for my guy. He should be fine, but still we caregivers worry.
I’ll promise to let you know how it pans out. Pray for us.
Mar 21st, 2016 by Lori Puente
“Lori! Your voice is missed! – Pat Killingsworth
Before I launch into what is happening with Dave and I, I have to spew my pain at the loss of Pat Killingsworth. OMG! How can this happen? Pat and I had a very tumultuous beginning in our friendship. He was anti SCT and very ANTI LITTLE ROCK! He and I had MAJOR SPATS! It was private and intense. But in the end he sent me his newest copy of his MM Book and in it a note said, “You convinced me. I added a section about the treatment in Little Rock.” I came to love Pat. We met up for my first myeloma support group in Spring Hill, FL. My in-laws live there. I contacted him that we would be close and hoped we could meet in person. He invited me to the meeting and then pretty much bush whacked me with introducing me and asking me to tell our story. I realized as I was sitting there, that I could tell our story, so I did. After that, we met for breakfast at a local diner. He was very generous and kind to Dave, even though it was clear that Dave had very little understanding of his disease. This was a major problem for Pat, not Dave, just in general. He and I would go at it about this point. I would explain to him that each “couple” has their own method of dealing with disease. For us, it was me figuring it out. It didn’t mean Dave was uninformed. It just meant that it what was worked for us.
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Jan 5th, 2014 by Lori Puente
“Love does not consist of gazing at each other, but in looking together in the same direction.” ~Antoine de Saint-Exupery
Almost three years ago our wonderful nephew and his relatively new girlfriend found themselves in that situation that is as old as time, unexpectedly pregnant. Both still at the beginning of their college experience, neither family having yet met, it was one of those moments that could have gone really badly. I am very happy to say, it did not, quite the opposite in fact. A fact that makes me incredibly proud and happily weepy. Continue Reading »
Jan 2nd, 2014 by Lori Puente
“Let us be grateful to people who make us happy, they are the charming gardeners who make our souls blossom.” – Marcel Proust
The new year, following holiday festivities that sometimes seem to never end and have angst and stress for some, always brings about a time of reflection for me. While later in my life I seem to do this regularly, not needing the new year milestone celebration, I’m mindful of the things going on in my life, my friends, and my family. Continue Reading »
Dec 22nd, 2013 by Lori Puente
“You don’t have a soul. You are a Soul. You have a body.” – C.S. Lewis
I use to ponder this as a pre-teen, in my confusions rolling around in my head trying to understand a Sunday School lesson, or a conversation with another pre-teen about God. I had come to this conclusion and actually was quite surprised to have found this quote from C.S. Lewis this morning. Just goes to show that often our thoughts and conclusions align with many others in the world and are not unique, but they are unique to us at the time of our realization. I think it’s better that way. To sometimes discover things on your own, from your own observations. But it doesn’t hurt to have them validated by others who have come to the same way of thinking. Continue Reading »
Dec 20th, 2013 by Lori Puente
“Dr. Damian Green, a myeloma expert from Seattle Cancer Care Alliance, discusses the role of transplant in myeloma and the continuous refinements to induction therapy. Dr. Green speaks about ongoing studies in myeloma, how pre-targeting radioimmunotherapy might be utilized, and explores the potential to use novel therapies prior to transplant to increase the rate of success.”
Andrew Schorr’s Patient Power website and interviews of specialists and coverage of conferences continues to be a great source of current information, opinions, and data on Multiple Myeloma, it’s treatments, breakthroughs, results.
Here is a link to one with Dr. Damian Green.
I encourage you to sign up for email updates.
Dec 19th, 2013 by Lori Puente
Monterey Lone Tree
“Instruction does much, but encouragement everything.” – Johann Wolfgang von Goethe
Last night Dave and I attended a MM support group holiday meeting near Spring Hill, Florida, complete with a delicious catered meal and a sponsored patient ambassador presentation.
Two years ago when I came to our in-laws for the holidays I was invited to join this group for the holiday meeting by Pat Killingsworth. Pat and I had had correspondence but had never met, so I was excited to go. I had never been to a “support group” before. Dave, unfortunately was experiencing a really bad cold and you know the rules. Sick people stay home! So I went solo and had an amazing evening with others battling this disease. It was very inspirational and uplifting and I made new friends. Always a good thing. Continue Reading »
Dec 2nd, 2013 by Lori Puente
“Each of us has his own rhythm of suffering.” – Roland Barthes
We have lost many this year to MM and other cancers or health issues. Having conversations with my many friends, both personally and via the net, one thing comes through loud and clear, getting through milestones and anniversaries is very hard. With the holidays being a particularly difficult time, I thought perhaps we could express it out loud in the hopes that others will find some solace in the camaraderie. Continue Reading »
Nov 7th, 2013 by Lori Puente
“What you spend years building may be destroyed overnight. Build anyway.”
It surely has been a long time since I have posted! Some of us have stayed in contact on FaceBook in one of the MM groups and so I haven’t felt overly disconnected, but disconnected nonetheless. What can I say, but we are doing extremely well. The kids are pretty grown up, self sufficient, enjoying their lives. Dave and I are back to the grind so to speak, but with interesting changes. We continue to be happier than we have been in our three plus decades together. Dave continues to work entirely too much – that didn’t change. What did change is he enjoys it more. Who’s to say he wouldn’t have anyway being more “mature” at this point. Or maybe it’s the company, his colleagues, the work itself? I don’t know, but it’s just nicer, even if I wish he could manage it a little better. What has changed is that he can truly leave it and enjoy our time together or visits from friends and family. He doesn’t have that distracted “I’m thinking” look he used to have no matter what we were doing. It used to annoy the hell out of me. 🙂 Continue Reading »
Jun 13th, 2013 by Lori Puente
“Research is creating new knowledge.” – Neil Armstrong, Astronaut
Dr. Usmani, a researching physcian at UAMS in Little Rock, Arkansas, in the Myeloma Institute did a brief overview of the retrospective comparative study he was presenting at the conference on Total Therapy 3a and 3b regarding the newly diagnosed High Risk Multiple Myeloma patients. Continue Reading »
Jun 10th, 2013 by Lori Puente
Monterey Lone Tree
“A piece of me goes with them.” – Lori Puente
We lost another giant soul in Myelomaville last week (Hanna – Margaret’s heartfelt tribute). Some of us knew it was coming, but it still hits you hard. Every time this happens I feel sadness and meloncholy. Each time someone relapses and goes back for more chemo, more “new” drugs, my shoulders sag just a little.
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Jun 7th, 2013 by Lori Puente
“Attitude is a little thing that makes a big difference.” Winston Churchill
This continues to be a controversial topic. There are some scientific studies and research that have been going on forever on this. It’s a difficult test to run and quantify accurately in a way that is definitive. I tend to be cautious when chatting with patients and caregivers about this because I would never, ever want them to feel in anyway deficient. That somehow if they just prayed more, believed more, were more positive they would have a desirable response to their treatment. It totally defeats the whole idea of the concept if it makes someone feel inadequate. Continue Reading »
Jun 6th, 2013 by Lori Puente
“There are things we don’t want to happen but have to accept, things we don’t want to know but have to learn, and people we can’t live without but have to let go.” – Unknown
First of all, we had another stellar report from our recent post maintenance therapy check up in Arkansas. David continues to do well and there are no concerns. I’m not happy with his T Cell lab reports, so once again made my pitch for 20 therapeutic HBO treatments that the clinic recommended when we went there before we started treatment. He is more open to it after seeing those numbers and I will call soon to get data in a new unit of time on cost and so on. Continue Reading »
Apr 5th, 2013 by Lori Puente
“Maybe Lori will take a break from her Myeloma Holiday and chime in.” – H.O.
Indeed! I would have never thought there could be such a thing as a Myeloma Holiday. Do you ever get away from it? Well, for some of us, yes. For many, sadly, no. Thankfully Dave and I fall into the yes category. It feels warm and fuzzy. Then I’m reminded of those who aren’t in that place. Every time I hear someone isn’t doing well, relapsed, passed away, I fight the guilt I feel that I can’t have all of you in my camp. I’m also mindful of the fact that it may or may not have a limited timeframe for us. So we just take what we have now and embrace it. Dave is not connected to Myelomaville the way I am so he is just living his life and enjoying himself, which is the way I want it for him. I’m more invested in a different way so I have to find outlets for how I’m feeling through others, mostly you, online, email or phone calls. Dave’s outlook on how he is and how he feels is important to us for his well being. So I don’t burden him with the less pleasant side of what happens in those darkened ally ways. Continue Reading »
Nov 7th, 2012 by Lori Puente
“What part soever you take upon you, play that as well as you can and make the best of it.” ― Thomas More
Dave and I are still basking in our recent check up in Arkansas, meeting with our doctor last Thursday. In a nut shell, Dave’s treatment has successfully ended. His scans, tests, labs, etc., are all good. Better than good in some cases and could be better in others, but not bad.
So indulge me as I bring you up to speed. Dave’s three year maintenance is up early December 2012. He missed his six month check up in May due to yet another doctor leaving the Myeloma Institute. That was our 3rd. Between Dave’s busy work schedule and MIRT’s declining admin personnel, Dave didn’t reschedule his “six month check up” until the end of October! The real push was our local oncology group telling him his prescriptions were run out from Arkansas and me jumping up and down like a three year old having a tantrum until I was exhausted and exasperated. Sometimes it really stinks to be a caregiver of a non-compliant adult! Anyway… Continue Reading »
Sep 29th, 2012 by Lori Puente
Myeloma Cure Panel broadcast
We had a very informative Cure Panel discussion on myeloma on Blogtalkradio with Dr. Parameswaran Hari as myeloma expert on 25th September at 4:30 pm EST. The show was co-hosted by Gary Petersen and had over 40 live callers.
On the panel we had Pat Killingsworth, Matt Goldsman, Keith Virgin, and Lori Puente. Dr. Parameswaran Hari meticulously answered and discussed with the panelists on the topic of disease progression. The AHA moment for all who were listening was Dr. Hari’s target of 40% cure!
Dr. Hari answered questions from listeners too in the question answer session.
There is some excellent discussion and information on MGUS and Smoldering and the new trials on treating Smouldering before it develops further which is as per all things Myeloma, in heated debate. I learned a lot of new things in this presentation. My question on the high risk factors wasn’t quite duplicated. Bottom line is this, many of the clinical high risk factors used in the past, and still being used today, are not considered problematic for the larger researching facilities and certainly not Arkansas. So if you fall into this category after staging with a local oncologist, I strongly urge you to revisit your consultation list and include one of the bigger facilities for your treatment. They will have a better shot at getting you into a sustained response.
Sep 28th, 2012 by Lori Puente
Monterey’s Lone Cypress Tree
“The journey not the arrival matters.” – T.S. Eliot
Dave and I went on a road trip to Monterey, CA.
So for weeks we were trying to get away to just DRIVE in the new/used “CaliCar” we recently got. Top down, destination known or unknown, just hit the road jack! Weekend after weekend was obligated to one wonderful thing or another and finally we made a break for the coast. It wasn’t about where we were going or what we would do once we got there, it was truly just about driving our cool little convertible with the top down and the music blaring.
We had a ball. It was one overnight and back again. We spent some time on Canary Row and dinner at Schooners at the Monterey Plaza Hotel. Continue Reading »