unexpected news

Last Thursday I got disappointing news that the chemo therapy protocol that I am on is not working. The tumors are growing in both my pelvis and back. This is contrary to the encouraging news from few weeks ago that the tumor on my back was shrinking. After a few days of shock and despair, I contacted Dr. Sabbatini, the sarcoma specialist in MSKCC in NYC and he heavily suggested a drug call Votrient. Votrient is a newly approved FDA drug that is used for renal cancer and is in phase III studies for sarcoma. It's not a chemotherapy but a tyosine kinase inhibitor which blocks proteins, I don't understand it fully but I know the drug works very differently than chemotherapy. I may have some hoops to jump through to get Votrient but I am pretty certain I can get it and I am doing everything I can to expedite the process.

I am still working on keeping my weight up which has become harder because my appetite isn't as hardy as it was. I frequently have abdominal pain which is a real downer for eating and to make things more complicated, I am super finicky about what I want to eat; one minute its roast beef the next cinnamon bread.

I hope next time I post I will have better news.

Becca

it's all about the food

I am eating eating and still look emaciated. I feel better than I look, thanks goodness. I am a roaring 105 pound, and pretty much eat continuously throughout the day, and why do I look so skinny? Don't know, but I am working hard on gaining weight any way I can. Starting with my morning breakfast shake of hemp milk, ground, flax seed, omega 3 oil, ice cream (or Coconut Bliss), banana, dates, berry concentrate, greens mix, protein powder, whey powder and vitamin C goo, whew! I haven't calculated but I think that's a lot of calories.

I have a few more days of home hydration through my port and than I am free!!! I feel suspiciously good, and waiting for the other shoe to drop, maybe it won't, fingers crossed. So far I have had no nausea, no fatigue, no pain, and my digestion is working well. Yes! I can feel the tumor on my back that Dr. Tracy measured two weeks ago and it's definately getting smaller and softer.

All things considered, things are good

Becca

headed for surgery...I think

I am headed for surgery in two days. The plan is to go in with cameras first to determine if the surgery can safely get all the disease out, if that looks possible then they will go forward with the surgery, if not I will go the chemo therapy route. There are pros and cons to both routes, and neither is perfect but we're going to work it best we can.

I will try to be in touch the best I can through this. Thanks to all my friends and family who have been such a tremendous support.

Becca

cancer hell redux

It's always hardest to share the bad news, and bad news it is. My scans of the 19th show progression in both the pelvic and rib tumors. Given this growth, I am no longer on the Gemzar the drug that has worked for me for all these months.

This past week I have met with two surgeons at UCSF, an abdominal surgeon and the thoracic surgeon and the Dr. Jahan the medical oncologist. It's not so clear cut what my next step should be. There're some chemo drugs that I can consider and there's surgery. The two surgeons both said that surgery is "feasible" but had some concerns about the disease coming back while recovering from surgery, precluding me from doing a systemic treatment while recovering. That is one perspective. As difficult as surgery is and the fact that we don't know what may or may not crop up, it's near 100% it will get the disease out of my pelvis and abdomen. The plan is that after I recover from the pelvic surgery I would have the surgery to get the rib tumor out. After all that, then , IF NECESSARY, after recovery we can kick in with a chemo therapy. Best case scenario, I get the large pelvic tumor out (including a small tumor near my liver and checking out a suspicious growth in my right kidney) and get the rib tumor out then I will NED for a long time. Worst case scenario..... I don't really want to go there.

Given that chemo therapies response rates are far from stellar for LMS, surgery seems like the best option.

On top of all this, since Friday I have had severe gasto-intestinal pain. I am not sure if it's cancer related or a bout of gut flair up due to other factors, ouch.

Here comes the good news...On Friday morning Berkwood-Hedge had a walkathon for LMS research and they raised over $3000! I was so honored! I had a blast walking with the kids and staff. The kids were so proud that they could help raise money and excitedly shared with me how much they had pledged. It was a really fun morning.

That's all for now.

Becca

Count down to scan

There is just over a week until my next scan and the anxiety, or what we call scanxiety, has kicked in. Every scan is" important" but this one has the extra punch of being the first one since starting chemo (gemzar) in February. I have been feeling optimistic, mostly, and in my gut feeling is that the scan will be good, however my mind won't be at rest until I have the scan report in my hands.

I continue to do Qi Gong everyday, take my supplements and have now added a homeopathic remedy. Last month MD Andersen (one of the biggest cancer centers in the U.S.) published a study that found that homeopathy to be as effective as chemo therapy in breast cancer. That aside, the doctor I am consulting with has been working with cancer patients for many years and obviously believes that homeopathy plays a role in the treatment of cancer.

The art auction at Vintage Berkeley two weeks ago was a fun and successful. Thanks to the many artists and the crew of folks that took on the many tasks to make the show possible, and thanks to everyone who attended. Over 2/3 of the art sold with just a few pieces for sale still. We netted about $3000, not a huge amount but nonetheless money that will go directly to Matt Van de Rijn's research at Stanford. Speaking of fundraisers, once again Berkwood Hedge School is stepping up to bat for LMS research with a all school walkathon on April 23rd. Once again I am honored and thrilled and deeply touched at the continuous support from the Berkwood Hedge staff and community.

Keep your fingers crossed!

keep you posted

Becca

feeling good

Today after waiting at the cancer center for nearly 2 hours I was told that my white blood count (the immune system) was too low to administer the chemotherapy, arghhhh. I had a mini freak out "if I can't get the treatment today the tumors won't shrink, blah, blah, blah) I immediately started listening to my Qi Gong on my ipod and began feeling calmer, then I talked with Carla, my friend and acupuncturist, she assured me that this does happen and it will be okay. My doctor also was pretty calm about it, so things are good.

Mexico was WONDERFUL and I came back feeling very relaxed and nurtured. More than once (actually more times than I like to admit) Maryclare had to talk me down when my mind started to spin about these new tumors, so in reality about 50% I was a walking worry wort and the other 50% of the time I was able to enjoy the yoga, the beach, and the great group of women at the retreat.

The following Monday I had an appointment at UCSF with Dr. Jahan to check in and to discuss plan "B" if the gemzar doesn't work (I don't mean to sound cocky, but i think it's working) and he checked out my abdominal/rib swelling that I was convinced was cancer gone wild in my plural cavity (more like my mind gone wild thinking about my plural cavity). But alas, it's most likely a hernia. Dodged that bullet!

The art benefit on March 27th is in full swing and we now have so much art we will be hard pressed to find space to hang it all, which is a good thing. The variety is astounding! I am overwhelmed by the generosity of the artists.

That's all for now
Becca

back at it

On Tuesday I talked with Dr. Sabbatini at MSKCC and he strongly suggested that I go back on the Gamzar, so that's what I will do, at least for the next 6 weeks. He feels that because it worked so well before that there's a good chance that I will respond again... keeping my fingers crossed! It's my habit to jump to "plan B" just to be prepared for the "what ifs" I am trying not to indulge in this too much, because the Gemzar going to work, right?! But nonetheless, I will do my homework for the "plan B, C and D"

Overall it's been a tough week, the emotional roller coster at it's most extreme, from feeling like this is the unthinkable slippery slope, to the Gemzar is going to work and that if it doesn't I have many unused treatment options. One of the things that has really helped me out this past week is my Qi Gong practice which I have really stepped up since last Wednesday, it's so empowering, it gives me a strong connection to the power of the mind in relation to health and healing.

Despite, all this hell I got the green light to go on a yoga retreat in Mexico! I am so looking forward to it, it's going to be wonderful to be near the ocean and doing yoga with Gay White, my favorite yoga teacher and friend, and hanging with my dear friend Maryclare. I leave on Saturday.

Best,
Becca

big shock!

On Wednesday I had a CT scan and got news that blew my socks off, just 6 weeks after my good PET scan, I have a 6 cm tumor low in my abdomen and an other slightly farther up that measures 5.5 cms. It' unclear if the two are connected. I have started back on the Gemzar for the meanwhile and am waiting for Dr. Sabbatini at Memorial Sloan Kettering to get back to me with other treatment options. Dr. Tap at UCLA has suggested a combination of two drugs both pills, one is Temodor and the other is called Sorafenib. From my conversation I had with Dr. Sabbatini in late December I think he will also suggest this protocol. I am trying to stay calm, not always easy to do.

I am looking hard for the "good" news and the silver lining, digging digging...... Okay, so nothing is attached to a major organ, not yet any way, and my lungs are clear, with the exception of a small density at the base of the left lung, not sure what it is. There is a bit of uncertainty about the left rib area. So really the only major issue is the abdomen. I am in a scary place right now, but I keep on reminding myself that I have been in these predicaments before and I have gotten through. Way back when, over two years ago, I did have 40 nodules in my lungs, that was BAD but the Gemzar and Taxatere took care of that. Last year, more tumors and again surgery and Gemzar did it's magic. So, yes the good news is my body responds really well the chemotherapy drugs, and if the old chemo protocol doesn't do it I have other options.

On a happier note, me and few dedicated friends and family members, including Maryclare, my mom, Deanne, and Kalen, are organizing an art show and a silent auction at Vintage Berkeley Wines on College Ave. The auction is on March 27th at 7:00. We have collected many pieces of beautiful art from local artist and we plan on having a great party with terrific wine and yummy hors d'oeuvers. There will be an e-flyer soon with all the all the details.

In this time of stress it's really nice to be working this fundraiser, such a good distraction, toward a cause so important to me and others with Leiomyosarcoma.


That's all for now,

Becca