Saturday, December 31, 2016

Potrait of a Friendship in the Face of Cancer

Sad and beautiful essay from the New Yorker Magazine. Story and photos of a photographer's documentation of his friend's fight with colon cancer.

http://www.newyorker.com/culture/photo-booth/portrait-of-a-friendship-in-the-face-of-cancer

Making the Shift

Brief update. Saw Berenson and the kidney doctor the other day. Kidney doctor is happy My creatinine is in mid 2s, best it's been. Potassium and phosphorus looks good, meaning I can still have flexibility in my diet. We reduced one of kidney drugs. And in terms of Kilimanjaro, kidney doc gave me a final thumbs up.

Berenson also very happy. Continued improvement on my myeloma numbers. I can switch from doing darzalex every Friday to now every other Friday. That's huge.  I've been massively tired since starting this regimen. We're going to adjust my pomalyst again to try to minimize the tired. I started at 3 mg per day. Cut it to 2 mg per day. Now this cycle, we've reduced it to 1 mg of pomalyst per day. Fingers crossed it helps.  Berenson also gave a big thumbs up to Kilimanjaro. So despite my concerns about being in good enough shape, it's on. Roughly 6 weeks to go.

Have a happy and safe and healthy new year everyone!!!!

Friday, December 16, 2016

Let It Fly

I'm just two months from Kilimanjaro. Now that I've switched treatment, I'm feeling better and more energetic. So I gotta get super serious about training. I've added 25 pounds of kettle balls to my pack and I'm wearing it when I walk Gracie to get used to the weight and feel of the pack.


Thursday, December 15, 2016

Institute for Myeloma and Bone Cancer Research

As you may or may not know, Dr Berenson, in addition to his dedicated practice, has a non-profit research group, the Institute for Myeloma and Bone Cancer Research. They're doing some exciting work. Below is a year end summary of their accomplishments and goals.


Dear Friend:
 
We wanted to give you an update on the extremely important and successful work that the Institute for Myeloma & Bone Cancer Research (IMBCR) has undertaken during the past six months as we continue our groundbreaking research into finding a cure for multiple myeloma and other bone cancers.
 
IMBCR remains the only independent non-profit cancer research institute working to find improved treatment, and ultimately a cure, for multiple myeloma, a cancer of blood cells that reside in the bone marrow.  While the focus of the research is multiple myeloma, many therapies discovered in our research laboratory can apply to the treatment of other cancers, particularly cancers that spread to the bone such as prostate, breast and lung cancer.  
 
Because of our research, we have continued to develop new treatment regimens that have benefitted patients with multiple myeloma and other blood cancers.   To continue our research, we need additional funds and we now ask for your financial support.
 
IMBCR continues to be involved in very exciting work.  We have identified new treatments for myeloma, identified new ways to follow the disease, and completed research that has led to a better understanding of the biology of myeloma.
 
First, we have made much progress on our new protein marker called B-cell maturation antigen (BCMA), initially found in the blood (serum) of myeloma patients. With this simple blood test, we can predict a patient's likely response to treatment, time until they might relapse, and their long-term outcome with the disease. It also provides a much more rapid way to determine whether a patient is responding to their treatment than currently available tests, which will allow doctors to make much quicker changes to a patient's treatment. This will both spare a patient from experiencing potential side-effects and shorten the time a patient would stay on an ineffective regimen. It also should offer the possibility that patients can start out with less toxic treatment and only add in medications or change the treatment early enough so that the ineffective less toxic treatment will not sacrifice the patient's outcome. For myeloma patients whose serum does not have the conventional blood markers, we have shown that serum BCMA levels can be used to monitor them rather than the invasive bone marrow exams and PET scans that are required to follow their disease presently.
 
Second, we have now established that serum BCMA can be used to track and predict outcomes for patients with other related cancers including Waldenstrom's macroglobulinemia and chronic lymphocytic leukemia.  Patients with the latter disease do not currently have any serum marker to chart the course of their disease.
 
Third, we have also established that serum BCMA levels are extremely low in patients with immune deficiencies and associated with disease-related complications in these patients. This likely represents the first blood test to both diagnose and predict clinical problems in patients with primary immune deficiencies.
 
Fourth, we have now shown that low levels of BCMA predict poor outcomes for patients with breast cancer and expect that this is likely to be the case in many other types of cancer that we are now testing.
 
Fifth, a hallmark of myeloma is the associated immune deficiency which often leads to infection and a lack of a patient's ability to fight off the myeloma effectively. Until now, what caused this problem for myeloma patients was poorly understood. We have now discovered that this same protein, BCMA, when present at high levels in the serum as it is in myeloma patients, causes the occurrence of the immune defects that occur in these patients. This groundbreaking research was just published in a top cancer journal, Clinical Cancer Research. We are now working on ways to prevent this from occurring so that myeloma patients can have functional immune systems which will allow them to fend off infections and fight their myeloma more effectively. Our early results with an inhibitor of the enzyme that leads to the shedding of BCMA show that we can prevent it from being released off of the myeloma cells. This is likely to pave the way for a multitude of studies to use this approach to reverse the immune deficiency as well as make BCMA-targeted approaches to treat myeloma more effective. 
 
Sixth, we have recently identified a new serum protein that is elevated in myeloma patients especially those with poor outcomes and believe that levels of this protein may predict responsiveness to specific anti-myeloma treatments. We are currently doing further testing on this new serum marker in our laboratory.
 
Seventh, we are also carrying out further work on a drug called Jakafi. It is currently used to treat a bone marrow condition in which patients make too many blood cells. We have shown that this drug increases the effectiveness of a variety of other drugs that are currently used to treat myeloma including Revlimid and steroids.  As a result of our promising preclinical work, clinical trials are starting now with this combination. Moreover, a newer version of Jakafi is in early development and we have shown that this new drug has major activity against myeloma, especially when combined with other anti-myeloma drugs.  These studies have led to clinical trials that are now evaluating the most promising combinations based on IMBCR's results.
 
Eighth, we have furthered our work on the pathway that we recently uncovered through which Jakafi can help boost the immune response to the patient's myeloma.  Specifically, a kind of white blood cell called a macrophage, which is a 'scavenger' cell, can exist in two forms -- one which increases tumor growth and the other which slows the growth of the myeloma. We have shown that Jakafi markedly reduces the number of macrophages that make the tumor grow, while increasing the types of these cells that eliminate the myeloma.  We have also uncovered the specific pathways in the macrophage that produce this effect.
 
Ninth, we are also working on specific genetic signatures that identify resistance and sensitivity to a variety of currently used drugs for treating myeloma patients. We have now identified specific ones associated with sensitivity and resistance to a number of anti-myeloma drugs which will help make more effective treatment planning decisions for individual patients.
 
Tenth, we have been working on a new, exciting approach to treat myeloma that will only eliminate the tumor cells without having any side effects. This is a treatment that will target the genetic material that is only present in the tumor cells allowing tumor specific killing without any side effects.
 
We are all very excited about the new discoveries that we have made to make the lives of patients with myeloma better. The advancements during this year at IMBCR would not have happened without your generous support.
 
We count on our many donors and financial supporters to continue with their remarkable efforts in funding our research and we have enclosed both a Pledge Card and a reply envelope for your use.  
 
If it is more convenient, you can make a secure online credit card donation by visiting our website: www.imbcr.org.  Please click on the "Donate Now" button. 
 
You can also make a credit card donation by telephoning our main office number: (310) 623-1210.
 
In advance, we thank you for your donation and, if you have any questions or comments, please do not hesitate to contact either of us at the above telephone number. 
 
With thanks and best wishes for the New Year,
 
 
                   
James R. Berenson, M.D.                                             Geoffrey M. Gee, Esq.
President, Medical and Scientific Director                       Executive Director                 
*The above information is not intended to be used or construed as a substitute for professional medical care and advice provided by a physician. People who take the information and make decisions regarding their health or medical care, which they believe are based on ideas contained in this article, do so at their own risk. The IMBCR is not responsible for any adverse effects or consequences resulting from the use of any of the suggestions or information contained in the article but offers this material as information which IMBCR believes readers have the right to hear and utilize at their own discretion.

Wednesday, December 14, 2016

Tuesday, December 13, 2016

Darzalex aka Daratumumab

Interesting article that's not too technical about Darzalex, my current therapy. I take it with pomalyst and dexamethasone.


https://www.cancer.gov/news-events/cancer-currents-blog/2016/daratumumab-fda-myeloma-new

Saturday, December 10, 2016

Saturday, December 3, 2016

Moving Mountains for Multiple Myeloma

We're just over two months away from Kilimanjaro. The excitement is building. Can you feel it? The MMRF has started promoting the climb and the climbers. The below link will take you to a page with climber's blogs. You can read my blog here and you can learn more about the folks I'll be spending nearly two weeks with. It's a great group.

http://www.movingmountainsformultiplemyeloma.com/kilimanjaro17/blog

Also, you still have time to donate. By goal is $12,000 and I've recently crossed to 10,000 mark.

Here's the link to get to my donation page.

Matt's Kilimanjaro Donation Page

Thursday, December 1, 2016

Bag o Iron

My blood counts are going up with the new regimen, but I'm also low on iron. Last week and this week I've had to get a 30 minute iron infusion. It looks like this: