NIH & Nantucket this week: Jet-setting?!

Within the next week I will travel to Nantucket and the NIH/NCI in Bethesda, Maryland. I feel like such a jet-setter! ;) Ha. Not. The Nantucket trip is to celebrate our 2 year wedding anniversary and I'm traveling to Bethesda for my 6 month follow up for the Natural History Study of MGUS and SMM. Let's see, which trip am I looking forward to more?

Nantucket:

 

Ahhh: Rest & Relaxation

NIH:

Ahhh: Stress & Anxiety

 

I'm hoping the NIH visit is uneventful... should just consist of labs and an appointment. I'm flying to Bethesda and back to Boston in the same day so there really CAN'T be anything more than that. ;)

 

When I was at the NIH back in February (Abnormal Skeletal Survey & Perfect Blood Work: NIH Day One  &  Bone Marrow Biopsy & CT Scan: NIH Day Two) I saw Dr. Landgren many other myeloma research fellows. I'm not sure who I will see this visit as I've heard which doctors you see can vary each visit as you are monitored for the Natural History Study. I do have quite a few questions prepared with respect to the testing I've had at the NIH vs. the testing I've had at DFCI as well as my bone density test results.

Dr. Landgren was actually recently interviewed. You can listen to the audio recording of the interview here:

http://www.blogtalkradio.com/mpatients/2013/08/02/dr-c-ola-landgren-national-cancer-institute


Or, read the read the transcript of the interview here:

http://www.mpatient.org/dr-c-ola-landgren-discusses-the-importance-and-availability-of-new-more-accurate-diagnostic-testing-to-identify-and-treat-myeloma-in-more-personally-relevant-ways-and-his-detailed-work-in-mgus-and/


The interview is very interesting. Dr. Landgren discussed the importance and availability of new, more accurate diagnostic testing, and his work in studying MGUS and smoldering myeloma. There are many parts I could comment on but one that stood out to me was when he spoke about the incuribility of myeloma. He said this:


"So really what I concluded for myself was that I think the main obstacle why we don’t have a cure for myeloma I believe is because we tell ourselves that it’s incurable. That’s what I kind of dislike. I didn’t like that. So I feel that we have to remove that. We have to stop saying that. So every paper I have written after I kind of came to that conclusion and every paper I will write in the future including papers I will review for journals and I review a lot of papers, I will comment on that to say, “Please remove that because we don’t know that.” "


I totally love that. I wonder if he's right, what could happen if doctors started using the phrase, "Myeloma is not curable - YET!" instead of "Myeloma is incurable." ?

It's all about the mindset, right?! Oh, and the crazy complicated cells and their environment. ;)

Looking forward to jet-setting this week.

Keep on truckin' !

So I had my 3 month appointment with Dr. R last week. Overall... it was fine. My m-spike was up a bit but that has been the trend for the last 4 years. My 24 hour urine was negative for monoclonal protein - but still have to do another collection in 3 months...grrr. My IgG was up a bit, lambda was up a bit, FLC ratio down a bit. The rest of my numbers that are sometimes high/low are still high/low. HOWEVER, my B2M that was higher than usual in April and was at 2.4 was down to 1.8. Very happy about that. Dr. R says everything overall is "stable". The devil is in the details. ;)

I had another discussion with Dr. R in regards to bisphosphonates as I have low bone density (osteopenia) in my spine. I am not starting bisphosphonates yet but I just wanted to clarify his recommendations for me. He did confirm that he would recommend zometa infusions for me every 3 months. He said that bisphosphonates do help prevent bone involvement and prolong survival but the studies have been "mixed" as to whether or not bisphosphonates help prevent progression to symptomatic myeloma from the precursor states. He's still mainly concerned about my recurrent fevers.

I also asked him about a study I had found: Timing of acquisition of deletion 13 in plasma cell dyscrasias is dependent on genetic context. This study suggests a possible role of Δ13 in the transition from MGUS to MM specifically in cases with t(11;14) or t(6;14). Well, I have monosomy 13 and t(11,14) and I showed him the paper on my phone. He wrote down the author and study on my visit note and said that he would, "look into it." However, he said that the study was 4 years old (2009) and he hasn't "heard much about it since." So. Yeah. We'll see.

As I wrote in my other post, Mind Body Medicine for MGUS and SMM, we also discussed the study starting at MGH/BHI using their 3RP program for patients with MGUS and SMM.

Overall... a good visit. At the end Dr. R said I need to just, "Keep on truckin'! " Heh.

I saw this picture posted on FB and it made me laugh. .

 

Always remember that the glass is really half full, despite how we may feel ;)

Mind Body Medicine for MGUS and Smoldering Multiple Myeloma

I met with Dr. R yesterday and I asked him, like I ask him almost every appointment, "Is there anything I can DO to help prevent progression??" He gave me his usual spiel about healthy eating, exercise, and stress reduction.

BUT, he also told me about a study that is commencing this fall at the Benson-Henry Institute for Mind Body Medicine at Mass General. The goal of the study is to:

"Measure the genomic and psychosocial effects of the Relaxation Response Resiliency Program (3RP) on patients with MGUS and Smoldering Multiple Myeloma".

This study was featured in the Mind Body Connector Spring Issue.  Read it!  It sounds promising.  Dr. R said that he thought it would be "wonderful" if I could participate and that it might help with stress reduction. Heh. He knows me well. I laughed and he said, "No this study is the real deal, no hocus pocus stuff."

I called MGH today to see if I could get more information. I found out they are not recruiting patients at this time but they will be "soon." I gave my information and I hope to hear back from them so I can sign up. The study is going to group patients by diagnosis - MGUS or SMM and then people will be randomly selected to be in the 8 week Relaxation Response Resiliency Program (3RP) at time of sign up or three months later. That's about all the info I got from the guy who answered the phone... I would love to participate if I can fit this study into my schedule this fall. I could definitely use some mind body medicine. ;)