Monthly Archives: January 2011

New developments for cancer patients

A lot of interesting new research and support for cancer patients has come across my computer recently. It is a good reminder that there is always something new around the corner – some new development, new drug, new reason for hope. I posted some of the links the other day. Here’s some more:

  • New cancer app to link patients to doctors, doctors to doctors, doctors to research and so on. This could be a big help when trying to find your way through all the treatments, research, clinical trials and information that gets thrown around. Right now it is only for melanoma patients…but, if it is effective, I see no reason why this won’t be expanded for all types of cancer. Melanoma app
  • Interview with Doctor Anas Younes about 2 new drugs that are in clinical trials for Hodgkin’s patients. Exciting news about SGN-35 and LBH-589. Interview with Dr. Anas Younes
  • If you are a Lymphoma patient, you should be following Dr. Anas Younes anyway. He is a valuable resource and a great doctor. We contacted him directly with some questions and he got back to us right away – pretty amazing for such a busy man. https://twitter.com/#!/dranasyounes

As for me, I’m grooving along. Started grad school last week. Already lots of reading and assignments to do. I’m looking forward to being more involved this semester and squeezing as much out of the experience as I can.

My counts are still low, but not critical. I still get tired in the middle of the day. There’s still a lot for Jen and I to celebrate and I’m enjoying going out more and spending more time with friends. As always, life is a series of ups-and-downs and a lot of people I know are going through some pretty difficult times. I’m glad I have the energy to walk along beside them instead of being cooped up with my cancer.

Be well.

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Giving

As you know, Jen spearheaded an effort to get DVD players in every room on the UCLA Santa Monica Hospital cancer floor. Many of you gave generously – either with money or by sending players, DVD’s, Wii’s and games.

I am long overdue to let you know that your generosity went to a great cause.

We collected over 20 DVD players, a couple of Wii’s and hundreds of DVD’s. When we last checked in with the wonderful nurses of 4SW, they told us that many of the patients are using the DVD’s and are grateful for the distraction. They are currently setting up some kind of ‘borrower’ cabinet so patients can take movies as they please.

And the kindness keeps pouring in as Jen was able to raise another round of money on her most recent commercial film set – which was matched by the company, Biscuit Filmworks – and matched AGAIN by the owner of the company, Noam Murro. Almost $5000 more dollars was raised for UCLA cancer patients. This will go towards more players, Wii’s, movies, refrigerators, microwaves and anything else that can make patients and their caregivers more comfortable.

UCLA gave us a little shout-out in their December E-news update. I don’t know why Jen is hiding behind me in the picture, she should be front and center. I’m just the one with the bad cells, she’s the one with the big heart.

Click here for full newsletter or see below for text only: UCLA E-news and Update

Thanks so much to everybody. The best way to show your support for Jen and I is if my experience motivates you to help others.

First, I’d like to thank you for your support of UCLA Health System. Our Partners make an immediate impact on our patients and their loved ones, with gifts enhancing Child Life/Child Development Services, Palliative/End-of-Life Support Services, and Social Services, among others. 

I would like to share one couple’s story of courage, strength, and generosity.

Beep, Beep, Beep – the constant repetition and echoing… Beep, Beep, Beep – sitting, waiting, and hoping for the best. Steve, attached to an I.V. and confined to a bed at Santa Monica-UCLA Medical Center and Orthopaedic Hospital. Jen, his wife, tries to stay optimistic, cheering Steve on and snapping photos to document the family’s journey. Hours and days pass by as they are haunted by the beeping, searching for any way to make the noise go away. A distraction was needed; they found it watching movies and playing games.

They weren’t the only ones in the unit, but what were the other patients doing? What if they didn’t have a laptop or portable DVD player? Jen was motivated to help those who weren’t fortunate enough to have the means for distraction or the comfort of family surrounding them. She felt compelled to take immediate action.

Jen posted on her blog about their experience and asked her generous friends, family, and employers to help other patients escape the beeping.

Through Jen’s & Steve’s efforts and compassion for others, UCLA Health System’s Partnership for Care has provided DVD players, gaming consoles, and an extensive library of movies and games to accommodate 26 patients at Santa Monica-UCLA Medical Center and Orthopaedic Hospital.

Donors like Jen, Steve, Noam at Biscuit Filmworks, and you allow UCLA not only to provide extraordinary healthcare with leading-edge research, but also to bring comfort and hope to patients and their loved ones on the path to healing.

I wish you and yours a safe and happy holiday season!

David Feinberg
David T. Feinberg, M.D., M.B.A.

CEO, UCLA Hospital System

Associate Vice Chancellor

Recovery

What happens after an autologous stem cell transplant? You get really tired and you have to be really, really careful about germs.

My recovery has been going pretty well the past few weeks. I decided to give myself a long break to recover – one of the reasons I haven’t updated my blog in awhile. I’ve spent a lot of time at home or close to home and we largely avoided the holidays. It would have been difficult to participate in the holiday spirit when I couldn’t go to shopping malls or be around large groups of strangers, Jen was working and I have to take a nap in the middle of every day. So we gave ourselves a much needed break. No presents. No cards. No running around.

A couple of weeks ago I had to be admitted to the hospital with fevers and chills. I’ve never experienced anything like it before – I was shaking so bad I thought my teeth were going to break. It was pretty scary while it was happening but the doctors and nurses were comforting when they told us that they see this type of thing a lot with stem cell patients. It wasn’t unusual for a patient to get fevers and have to spend a few days in the hospital under observation. They really did spring into action. And, although it sucked miserably to have to spend another week in the hospital, we did figure out that I had a blood infection and I got IV antibiotics and it all turned out okay.

I also had to get my PICC line removed for a couple of days. When my old friend Dr. Loh (my interventional radiologist) put a new PICC line in, the 10 minute procedure ended up taking an hour and a half. My tumor, stent and the wear and tear on my blood vessels makes dealing with the veins in my chest anything but simple. The whole experience was a solid reminder that I’m still pretty fragile and I have to continue to play it safe for the next couple of months.

My blood counts are still low, but stable. My hair is starting to come back in and I even have a 14 year old style moustache that I have to shave every couple of days. And I’m impressed with the rapid growth of my eyebrows.

During all of this, Jen and I have managed to get a few things done. I finished my graduate course and get an A on my final paper. Jen and I did some redecorating around the apartment. I’m in the finals in my fantasy football league. We sneaked away for a couple of nights to the Santa Barbara area for some quiet time. And Jen has embraced home cooking much to the benefit of my tummy and my taste buds.

All in all, its been going well.

Before I sign off, there are some other links that are important to share.

For women with cancer, there is a service that provides housecleaning and maid services. Definitely a good resource to take some of the load off and give yourself a break while going through treatment. Along with meals, this is exactly the kind of thing that really helps out cancer patients:  http://www.cleaningforareason.org/

Also, progress is constantly being made to improve the chances of lymphoma patients. This article describes how a new vaccine can extend disease-free survival for non-Hodgkins patients (http://www.sciencedaily.com/releases/2010/12/101206161742.htm).

And this article is about the development of a new drug that has shown 34 percent remission rates for Hodgkin’s patients (http://www.reuters.com/article/idUSTRE6B40WG20101205). This is the new SGN35 drug that seems to be doing wonders for my dear Hodgkin’s buddy Karin.

That’s all for now. Thanks for the platelets, holiday cards, love and support. And here’s to a healthy and happy 2011.