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
Monday, May 3, 2010
Sunday, April 11, 2010
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
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
Thursday, March 11, 2010
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
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
Thursday, February 18, 2010
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
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
Friday, February 12, 2010
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
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
Monday, January 25, 2010
money finally gets to Stanford
At long last the money we raised at the October fundraiser is in the hands of Matt van de Riji at Stanford. In the end we were able to give him and his team of researchers over $16,000! What a fantastic feeling! He was so thrilled with the gift and was blown away that we were able to raise so much in a single night. All the money is going to his research.
Matt and his colleague, Rob, gave me, Sharon and Susie Siegal (an other LMSer) a tour of the lab; we saw actual LMS (Lieomyosarcoma) tumor tissue in paraffin blocks (how it's stored when removed from the body) and we even looked at the tissue samples through microscopes. It's quite amazing how complex this kind of research is and it's all very interesting and amazing, but honestly so much of it is over my head, I am just happy that there're people who can wrap their minds around this stuff.
In layman's terms I am going to try to explain what Matt and his colleagues are up to with the research. Mind you, in a nutshell. Thanks to Sharon and others, Matt has many LMS tissues samples, 70, I think, and he was able to look at these samples and divide them into three subtypes of LMS in these three subtypes he found many targets, most notably a protein called CSF1. Targets are very important because if a cell has targets these targets can be potentially blocked with drugs. What is so exciting about Matt's research is that he not only found many target (his finding were confirmed by two other independent studies elsewhere) in these three subtypes of LMS, but he believes that there are existing drugs that will act as blockers, thus in essence starving the cancer cells from one of the foods that makes it grow.
I asked Matt what he would use our donation for and he said he wants to use it to move forward with the mouse xenograft studies, meaning he will injecting 8 mice with LMS tumor cells, 4 of them are the control group, no intervention, the other four will be treated with a drugs that he is hoping will stop the tumors. Mice studies are the precursor to human clinical trials, the whole process is slow, but Matt thinks that within two years his research could move into to a clinical trial.
I have been cursed with this horrible disease, in no way can I view myself as lucky, no one with LMS, or any cancer, can call themselves lucky, but meeting Matt and learning about the work he is doing I did feel lucky, actually it's much more than that, I have a deep gratitude ( a huge understatement) that this incredibly smart and devoted scientist is tirelessly working on the rare and obscure cancer I have. I speak for all of us living with LMS.
Be well,
Becca
Matt and his colleague, Rob, gave me, Sharon and Susie Siegal (an other LMSer) a tour of the lab; we saw actual LMS (Lieomyosarcoma) tumor tissue in paraffin blocks (how it's stored when removed from the body) and we even looked at the tissue samples through microscopes. It's quite amazing how complex this kind of research is and it's all very interesting and amazing, but honestly so much of it is over my head, I am just happy that there're people who can wrap their minds around this stuff.
In layman's terms I am going to try to explain what Matt and his colleagues are up to with the research. Mind you, in a nutshell. Thanks to Sharon and others, Matt has many LMS tissues samples, 70, I think, and he was able to look at these samples and divide them into three subtypes of LMS in these three subtypes he found many targets, most notably a protein called CSF1. Targets are very important because if a cell has targets these targets can be potentially blocked with drugs. What is so exciting about Matt's research is that he not only found many target (his finding were confirmed by two other independent studies elsewhere) in these three subtypes of LMS, but he believes that there are existing drugs that will act as blockers, thus in essence starving the cancer cells from one of the foods that makes it grow.
I asked Matt what he would use our donation for and he said he wants to use it to move forward with the mouse xenograft studies, meaning he will injecting 8 mice with LMS tumor cells, 4 of them are the control group, no intervention, the other four will be treated with a drugs that he is hoping will stop the tumors. Mice studies are the precursor to human clinical trials, the whole process is slow, but Matt thinks that within two years his research could move into to a clinical trial.
I have been cursed with this horrible disease, in no way can I view myself as lucky, no one with LMS, or any cancer, can call themselves lucky, but meeting Matt and learning about the work he is doing I did feel lucky, actually it's much more than that, I have a deep gratitude ( a huge understatement) that this incredibly smart and devoted scientist is tirelessly working on the rare and obscure cancer I have. I speak for all of us living with LMS.
Be well,
Becca
Monday, January 11, 2010
checking in after a long time
Hi all,
I am happy to report that my latest scan, December 23rd, was clear, however there's something lighting up on the pet scan in the 7th rib, front and back, but the doctors feel it is related to the VATS (lung) surgery last year. I am off the gemzar since the beginning of November. On the health front things are good.
Over winter break we visited Boston for a few days, then went on to Vermont to visit my friend Sophie and her husband Matt. They live in an amazing co-housing community in north western Vermont. We had such a fun and relaxing and time. My brother Norman and his girlfriend Lauryn came from NYC to join us for a few days which was wonderful. We helped sophie make cheese, we made something like 260 pounds which will be marketed in nine months. The cheese is an aged cheese which tastes like parmesan, really yummy. Sophie and Matt's younger son Casey is just a bit older than Abby and they spent countless hours playing inside soccer, basketball, and sledding in the fresh snow just a few short steps from the house. I honestly can remember such a relaxing vacation. After 5 days in Vermont I went on to NYC with Norman and Lauryn and engaged in all the big city pleasures; museums, food and people watching. My last night there we went to a club which was just a few blocks from Norman's apartment, go figure, to see an old friend Steve's band play. Steve hasn't see this friend in almost 20 years, so it was fun to say hello for him.
On December 16th I had a procedure called a thoroplasty, I think this is how you spell it, probably, not though, to get my voice back to what it was before the vocal cord nerve was damaged during the aforementioned VATS surgery. All along I was thinking that this was a simple undertaking, given that I have so many major surgeries, I was going in with the idea that it was no big deal, and it wasn't really, but apparently, this type of surgery is very delicate and took 3.5 hours, holly cow! I was on some major "twilight" drugs with allowed me to be awake but not really present. The surgery involved pushing the damaged left vocal cord toward the right, and to get the placement just right I was asked to speak during the procedure so they could test the quality of my voice. My voice works really well and for the first time in nearly a year I don't have to strain to talk, yippi
best,
Becca
I am happy to report that my latest scan, December 23rd, was clear, however there's something lighting up on the pet scan in the 7th rib, front and back, but the doctors feel it is related to the VATS (lung) surgery last year. I am off the gemzar since the beginning of November. On the health front things are good.
Over winter break we visited Boston for a few days, then went on to Vermont to visit my friend Sophie and her husband Matt. They live in an amazing co-housing community in north western Vermont. We had such a fun and relaxing and time. My brother Norman and his girlfriend Lauryn came from NYC to join us for a few days which was wonderful. We helped sophie make cheese, we made something like 260 pounds which will be marketed in nine months. The cheese is an aged cheese which tastes like parmesan, really yummy. Sophie and Matt's younger son Casey is just a bit older than Abby and they spent countless hours playing inside soccer, basketball, and sledding in the fresh snow just a few short steps from the house. I honestly can remember such a relaxing vacation. After 5 days in Vermont I went on to NYC with Norman and Lauryn and engaged in all the big city pleasures; museums, food and people watching. My last night there we went to a club which was just a few blocks from Norman's apartment, go figure, to see an old friend Steve's band play. Steve hasn't see this friend in almost 20 years, so it was fun to say hello for him.
On December 16th I had a procedure called a thoroplasty, I think this is how you spell it, probably, not though, to get my voice back to what it was before the vocal cord nerve was damaged during the aforementioned VATS surgery. All along I was thinking that this was a simple undertaking, given that I have so many major surgeries, I was going in with the idea that it was no big deal, and it wasn't really, but apparently, this type of surgery is very delicate and took 3.5 hours, holly cow! I was on some major "twilight" drugs with allowed me to be awake but not really present. The surgery involved pushing the damaged left vocal cord toward the right, and to get the placement just right I was asked to speak during the procedure so they could test the quality of my voice. My voice works really well and for the first time in nearly a year I don't have to strain to talk, yippi
best,
Becca
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