Tuesday, March 14, 2017

Kilimanjaro Photos

I've been back home about two weeks. from the Kilimanjaro. It seems like a long time ago. But then again, the memories and the time with an amazing group of people remains fresh.  I haven't had a chance to go through all my photos, but for now here are a few of them. I also want to say that the support and words of encouragement I received before and after the climb have been amazing and mean more to me than I can fully put into words. Thank you!


Our entire team, including porters and guides. The porters and guide made the trip possible.

Our team in front of what are called the Dr Seuss trees.

Me and my fellow patients at the end of the climb. Gary, Terry, April, Nancy and me.

Me on day 2. Still relatively fresh





Friday, March 3, 2017

Home!!!

I'm home. What an adventure. The following is a note I sent to folks via my donation page. It's a summary of the climb.


Dear friends and family,

I and the team are home safe and sound. Thanks to your generosity I raised over $16,000 and the team raised over a quarter of a million dollars. I knew the experience would be life changing and now that I've been home for 2 days I am beginning to be aware of how truly life changing the trip was. I've made friends who I'll be close with forever.

Physically and mentally it was a challenge like no other. I struggled on day 1, feeling like Katz in the book A Walk in the Woods by Bill Bryson. Starting on day 2 and all the way to day 6 I improved and felt better each day and got into a real groove. On summit night we started our ascent at midnight, I got up to about 16,000 feet, but couldn't make it to the summit. Seemed like the right decision for me at the time. In hindsight, I am disappointed in myself for not pushing through the pain and negative thinking. I am also disappointed that I might have let down the team and all of you.

Nonetheless this was an amazing experience and we showed that cancer won't stop us from pursuing adventures and challenges. Today I am right back to chemo, adding to the processing taking place inside my head. But I feel great.

Again,a huge thank to you all. Your kind words and generosity were absolutely motivating and inspiring.

Matt

Thursday, February 16, 2017

Kilimanjaro...Follow Along

Today's the day. Getting on a plane and starting the Kilimanjaro journey. Thank you everyone for the support and kind words. There are two ways to follow our progress.

http://www.movingmountainsformultiplemyeloma.com//KILIMANJARO17

https://www.facebook.com/MOVINGMTNS4MM

Friday, February 10, 2017

Countdown to Kilimanjaro

I'm 6 days away from leaving. Feb 16 I fly to Amsterdam, spend a day there. The team will rendezvous there and then we all fly together to Tanzania. About 20 hours total of flying. We spend a day in a small city called Moshi and then we start our climb. 6.5 days up. 1.5 days down. I am ready and excited beyond words. This weekend I'll get a couple of final things for the trip and then start packing. We have to keep our duffel bag below 30 pounds. Porters carry our duffel. We carry our back pack. I'm feeling strong and good. Clearly when we did the training climb in Colorado this past summer, I was on the verge of relapse. That climb and the subsequent Mt Baldy climb here in Los Angeles kicked my ass. But my new treatment, darzalex and pomalyst, is working like a charm and I feel as good as I have felt since being diagnosed. So I am pretty darn confident that I got this thing.

As a team we have raised almost a quarter million dollars. I'm approaching $15,000. The support and kind words I have received have left me nearly speechless. I so touched by the amazing support. I'll carry that with me up the mountain. And the team is comprised of a great group of people. All somehow connected to myeloma, including 6 patients (me included of course).

Our cell service will be very limited while climbing, but Cure Magazine, the MMRF and Takeda will have a satellite phone and will post daily blogs and a progress tracker. The links to follow us are


 
 
 
 
And don't forget, it is not too late to donate. The MMRF is working hard to find a cure for this incurable blood cancer.
 
 
 
 
 

Tuesday, February 7, 2017

March 4 Southern California Blood Cancer Conference

This is a tremendously informative event. It's free and well worth your time if you're in the area. I'm a big fan of the LLS and the patient support they provide.


https://www.eiseverywhere.com/ehome/scbcc/493501/

Friday, February 3, 2017

Pleasant Surprise

Yesterday I came home to this nice letter from the mayor of Long Beach. Quite a surprise.



Monday, January 23, 2017

All Systems Go For Kilimanjaro

This past Friday I saw Berenson. It's my monthly visit, but more importantly it was my final visit before Kilimanjaro. He gave a big thumbs up. The darazlex is working like a charm, I feel great and I'm ready. Dr B had no concerns, other than making sure I give his Institute of Myeloma and Bone Cancer Research (IMBCR) a shout out at the summit. Check.  Followed up the successful visit with lunch and beer at Barney's Beanery in West Hollywood. In my younger days I spent a fair amount of time there. Definitely one of my favorite spots. Fish and chips, beer. Check.





Thursday, January 19, 2017

Sunday, January 15, 2017

Gary Rudman Soon to be a Kilimanjaro Conquerer

Gary is one of my Kilimanjaro climbing partners. He's a myeloma patient, diagnosed in 2015. He's a beast and his motto is: Never quit Never stop. Not today. Not ever.

He's a nice story about Gary:

http://m.thecolumbiastar.com/news/2017-01-13/Front_Page/Conquering_cancer_and_Kilimanjaro.html#.WHvpvjgizmJ

Wednesday, January 11, 2017

Kilimanjaro Route

There are several routes to the peak of Kilimanjaro. We're taking the Lemosho route.  Follow this link to get a rough idea of our climbing itinerary. We taking the 8 day climb.


http://lemosho.com/lemosho-itinerary8.htm

Tuesday, January 10, 2017

Short Trailer of Our Kilimanjaro Team Doing our Colorado Training

Less than a minute long, but this gives a nice overview of the team and why we're climbing.





And it's not too late to donate. Here's my link....


https://endurance.themmrf.org/2017MtKilimanjaro/mattgoldman

Wednesday, January 4, 2017

LLS Free Telephone/Web Conference on Emerging Myeloma Therapies

This Friday the LLS is having an hour and half discussion on emerging therapies for myeloma. To register, follow this link: http://registerrmei.trafficmanager.net/lls/register/registrationpage.aspx?id=3393101en


Included in the discussion will be:






 How myeloma is diagnosed
Current therapies for myeloma patients
The role of clinical trials in the advancement of myeloma treatment
Emerging therapies for myeloma
Managing side effects
Communication with your healthcare team

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:



Sunday, November 20, 2016

Back to Kilimanjaro Training

Just wrapped up my first cycle of darzalex. Lab results were fantastic. Almost unbelievable how much improvement there is after one cycle.  But we'll take it. I can say I am definitely feeling better. Still having the crash today, two days after chemo. But yesterday I felt well enough to go on a short hike. Kilimanjaro is just 3 months away. Short work week coming up. Berenson Wednesday.  Chemo Friday. It'll be in the hospital since Phan's office is closed.  Should be smooth and easy. We've got it down to about five hours. It is the hospital so let's add a couple of hours.


Thursday, November 17, 2016

11.0 and 2.52

Dayum!!!  That creatinine is dropping like crazy. Good news. Thanks Darzalex. And blood counts going up, meaning increased energy. Tomorrow is day 22 of cycle 1. Might try and get a hike in on Saturday, gotta get back to Kilimanjaro training.

Friday, November 11, 2016

Latest labs

The doctors say that darzalex goes to work quickly because it targets the cancer cells. I'm no oncologist but I do know that finally my blood counts are going up and creatinine is dropping. Hemoglobin is 10.8 which means no procrit shot for first time in a couple of months. Creatinine is 2.82, meaning my kidneys are definitely out of failure territory. So I'd say something is going on.

Tuesday, November 8, 2016

hashtag of the day #fuckthisshit

Feeling ok physically after a couple of rounds of darzalex. But I'm in a horrible mood and really not happy with work and all that goes with it. It has absolutely zero value to me (other than a paycheck). My time working could end sooner than anticipated. And that's my update. Day 15 this Friday.

Friday, November 4, 2016

Done and Done

Problem free day with darzalex. Took about 6 hours. Next time it should take 4. The beauty of it all is I'll have insomnia tonight from the dex but that's ok because tomorrow is Saturday and don't have work or anything. I'm gonna stay up all night. Where's the black jack table?

2.79

Lowest creatinine since being diagnosed. 2.79. Yay kidneys!

Darzalez 8.5

Met someone at Phan's office who has been on darzalex for 10 months. Working like a charm.

Here's me, half way through the bag, with my favorite nurse.


Darzalex day 8

#SkolVikings #myeloma #MM4MM

Training hard for Kilimanjaro


Thursday, November 3, 2016

Darzalex Day 7, 5 and 1/2 years

A chemo cycle is 28 days. For the first two months of this new regimen, I'll be doing chemo every Friday, on days 1, 8, 15 and 22. Then start again. Tomorrow is day 8 of the cycle, but it'll be my second time getting darzalex. We'll do it in Phan's office which is way better than the hospital. Another reaction is unlikely.


Today is day 7 of the cycle. I'm a bit achy again. Moved around a lot during the night, one room to another trying to find just the right, pain free spot to sleep. Poor Gracie follows me around, waiting for me to get settled. I'm sure she's happy to get a nap in when I leave to work.


Also of note, yesterday was November 2. That makes 5 and 1/2 since original diagnosis. 66 months.  Finally my brain is working again after the 27 hour infusion of last weekend.



Monday, October 31, 2016

Darzalex Day 4. Vikings vs Bears

day 4. Monday.  Physically doing good. In fact all my body pains are gone.  I got a light workout in and rode the stationary  bike for a while.  Went to work a couple of hours late and left early. Got to ease into it. Totally brain dead though.

Tomorrow work, procrit shot and visit with Dr Phan.

#skol Vikings

Sunday, October 30, 2016

Darzalex Day 3

Home. Very nice. Two days in the hospital is all I can take. When I was first diagnosed, I spent a fair amount time in the hospital. Sometimes for a week or more at a time. That was a killer on my mental state. After a few days, I'd start to wonder if I could rustle up some drugs that would let me just call it quits. This latest stay was actually. I felt fine, it was just a precautionary stay, given the chance of a reaction to the new drug. I stayed somewhere I haven't been before. A smaller place than my normal spot. Nurse were great, you get much more personal attention. That made the stay easy.

Yesterday, no reaction. It really is a one time thing. But I was loaded with various drugs. Demerol, benedryl, dexamethasone, and Ativan. That's a lot.

As I said I got a some really nice messages and calls from my Kilimanjaro family. And that's what they are. We are connected forever. Despite my worries about being able to do the climb, I am more focused on it than ever. I have to do it. I'm going to give my body a rest for a few days, then I'll be back at the training. The nice thing is I have zero body pains. Maybe my body needed the rest. I think I'm a retaining a bit of liquid. I haven't been eating much but I packed on a few pounds in one day, just out of the blue. Weird.

Today is a rest day. Not sure about going to work tomorrow. I'm trying to conserve my time off, so nut sure what to do.

My mental state today is meh, so-so. I think I'm coming down from all the drugs. I'm wondering what next. Ok I have an 8 month program ahead of me. And then? And what about today and tomorrow and the next day? Getting out of site sounds good. No people, no stress. Just Matt time, living quietly and anonymously.

This will pass. Depression can be a side effect of Dara. And I always get the post dex crash. So I got this, just need a day to process it all. Thanks for all the support.

Saturday, October 29, 2016

Home!!!

Just in the nick of time. I had reached my hospital stay limit. Thanks all for words of support.  Day 2 of darzalex is friday.  Should be done in Phan's office since i got the reaction out of the way.

Darzalex 2.75

We've bumped the rate to 110, above what I reacted to yesterday. So I should be going home soon. I've received calls and messages from Kiilimanjaro teammates.  This is very special. I was worrying how this turn of events would effect my ability to go to the mountain. The inspiration from my fellow patients is poweful. So it's on. Kilimanjaro look out!

Also got a note from another Kili teammate. He just fell out of remmision after 2.5 years. He was doing only revlimid. He's switching to carfilzomib and pomalyst...an option we considered.

Darzalex day 2.5

Feeling great. Took a couple of laps around the hospy. The deal with Dara is that typically you get one reaction event and that's it. Yesterday I started at 50ml hour. We bumped up to 100 and had the reaction. Back to 50 and no issues. Today we've been increasing by 5 so I am up to 65. But even at this rate it would take forever to finish this thing. We are now taking incremental 10 ml steps.  Dara is rated at 200 and can even go up 400. Here we go. Let's light this candle! (See The Right Stuff)

Leslie checked in with Berenson and Phan. And we have agreement. 

Note Drazalex's formal name is Daratumameb (Dara).

Darlazex Day 2

Yes, day 2. Gonna be a long one.

This past week, my all over body pain was as bad as it has ever been. In the middle of the night, it was the worse. We recently did a skeletal survey and we ruled out the myeloma impacting the bones. But every bone and every muscle was hurting. And I'm not embilisshing by saying every one. Hands, toes, legs. Well, actually my back is the only that wasn't hurting. Decent sleep hasn't existed.

Phan's feeling is it's the myeloma and toxicity of all the drugs I've been on. Also, I haven't eaten much this week. Not much of an appetite.  Nonetheless, I gained several pounds.  When I checked in yesterday, we noticed I had some edema and swelling. I was feeling bloating. So my brain thought, of fuck my kidneys are failing. That would be game changer for me. Huge game chaanger.BUT, we did blood work at hospy. Creatinine is 3.2. That is a great number for me. On the official efr scale, it's out of failure range.

Yesterday, When we took darlazex on to a higher drip rate, I had a bad reaction. Breathing was impacted, then horrible shivers and rigors. Then all my pains were heightened. Not fun, not fun at all.  In fact a bit scary. A team of nurses got me blankets, rubbed my painful legs, they called Dr Phan. I got more, dex, demeral, more bendryal and we slowed the drip down. Breathing became easier. Shivers stopped and my pains lessened. That was a crazy ten minutes.

At 8 last night, they gave me an ativan.  And I passed the fuck out. Slept like a champ. Didn't wake up once. I can't remember the last time that happened. Sure I was highly medicated but I slept pain free. Just saw the morning nurse. The kicker is we're keeping me on slow drip. I have another 10 hours of infusion. So I'm in the hosiptal for the day. Hopefully I'll get discharged later today. Weekends are tough, hard to find doctors to give discharge notice.  Phan said once drip is done, I can go home. He's not on duty, but is available by phone. So later today, the nurses will call him to get the discharge notice.

 A few notes: thank god for my port. It makes the administration of all drugs super easy. One nurse wanted to also give me an iv as a precaution, In case I needed more drugs to fight a reaction. But we talked her out of it. Arm IV make the hospital stay a differemt animals. Restricts ability to move, gives a dull pain, my veins are hard to find and don't work so good and I would be left with ugly bruises.We convinced (pressured) the nurse to drop the thought of an iv.  It's an important reminder.  You, the patient, are the boss. You can ask questions and say no to stuff. Having your caregiver/advocate helps. When you are in pain or loopy or sleepy, you need that support. Scratch one thing. Just got a roomate. Ok, now I am ready to go home. Fuck

The kicker is I'm here for a while. Guess I'll watch lots of college football today.  I'm super hungry. I feel good. I'm in the oncology unit, so the nurses are extra friendlly.  teamgoldman lives to fight another day.

Friday, October 28, 2016

Side effects of darzalex

First hour of darzalex went off with no hitch. Then we increased drip rate and then i had a reaction. First breathing issues, then shivers and a painful back. We stopped and then restarted darzalex at slower rate. Plus a demeral iv that took care of shakes/rigors and pain. Now back to the drip with more benadryl.  Tired and loopy.

And...here it is.

Darzalex


Day 1, Cycle 1 Darzalex

So the interesting thing with darzalex if that for the first infusion, 50% of patients have an allergic reaction, sometimes impacting the respiratory system. Ergo, you do your first treatment in a hospital. Yuck. But i'm checked into Los Alamitos Medical Center, waiting on my drugs. It's going to be a long, slow drip.  Fingers crossed I don't have to spend the night.