I'll be starting treatment in 2 weeks . . . I finally decided on taking chemo (bendamustine) alone rather than joining the clinical trial. There were many reasons why I decided to go with chemo alone, but mostly because it just feels like the right decision for me. I will have a total of 6 treatments over the next 6 months.
The idea of taking a chemo drug again definitely makes me nervous and all the old emotions and memories from the 1st time I had chemo keep popping up. But according to my oncologist and everything I've read, bendamustine is supposed to be very well tolerated with minimal nausea and no hair loss - I even got my hair did today (thanks Marcille and Diane - you guys rock!!)
So I keep hoping for the best and waiting for the next 6 months to begin. I'm a bit scared to start my new path, but feel confident that I'll be in remission again because bendamustine has a very high response rate :) Go Bendamustine!
As a side note, did you know that bendamustine is actually an old chemo drug? It was developed over 40 years ago in East Germany, but it didn't have much cred here in the States until very recently. In fact it was only approved by the FDA for my type of cancer 2 short years ago. But recent studies have shown that it has an extremely high response rate with minimal side effects. Who would have thought that a near perfect chemo drug would have been invented so many decades ago from behind the Iron Curtain? I guess it's just a reminder to keep our minds open as to where the next great treatment drug will come from . . .
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Thursday, August 12, 2010
Sunday, August 1, 2010
Good news!! Biopsy results . . .
I finally received my biopsy results yesterday and I got the best news possible - my follicular lymphoma has not transformed into a more aggressive type of lymphoma!!!! My family, Michelle and I were all very relieved to get this news :) Transformation into a more aggressive lymphoma has a terrible prognosis, so the news was very reassuring that I'm not going anywhere any time soon.
My oncologist does want me to undergo chemotherapy, however. While it's good news that my lymphoma has not transformed, my onc stated that we still need to get my disease under control. He recommended 2 treatment options. One treatment option is a chemo drug called Bendamustine (also known as Treanda). The chemo would last 6 months, but it is very well tolerated and I most likely would not lose my hair :) I know I shouldn't care so much about whether or not I lose my hair, but when you lose your hair it's like you lose all semblance of normalcy and every time you look in the mirror you see a sick person. So keeping my hair does, in a weird way, make me feel better.
The other treatment option is a clinical trial involving Bendamustine and a new drug called Ofatumumab (I know a mouthful, right?!) Let's call it O-mab for short. O-mab is like Rituxan in that it is a monoclonal antibody designed to only kill the cells in my body that cause cancer. Unlike Rituxan, it is an all human drug (Rituxan has mouse in it). The clinical trial is designed to see if adding O-mab to Bendamustine is beneficial to treating follicular lymphoma.
I have to admit that choosing between the 2 treatment options is proving to be harder than I anticipated. If I choose to go with the clinical trial I will have to get a few more tests done - one is a bone marrow biopsy. The thought of having another bone marrow biopsy is not very appealing in that the 1st one I had was very painful. But I know I shouldn't make the treatment decision based on that factor alone.
So that's where I am right now - deciding between treatment options. If I go with Bendamustine alone, I will probably start chemo this week. If I go with the clinical trial, I'll most likely have the bone marrow biopsy later in the week.
I'll keep you updated . . .
Thanks again to my very kind and loving support network - your thoughts, well wishes, kind words, love and support make all the difference!!
Love,
Ness
My oncologist does want me to undergo chemotherapy, however. While it's good news that my lymphoma has not transformed, my onc stated that we still need to get my disease under control. He recommended 2 treatment options. One treatment option is a chemo drug called Bendamustine (also known as Treanda). The chemo would last 6 months, but it is very well tolerated and I most likely would not lose my hair :) I know I shouldn't care so much about whether or not I lose my hair, but when you lose your hair it's like you lose all semblance of normalcy and every time you look in the mirror you see a sick person. So keeping my hair does, in a weird way, make me feel better.
The other treatment option is a clinical trial involving Bendamustine and a new drug called Ofatumumab (I know a mouthful, right?!) Let's call it O-mab for short. O-mab is like Rituxan in that it is a monoclonal antibody designed to only kill the cells in my body that cause cancer. Unlike Rituxan, it is an all human drug (Rituxan has mouse in it). The clinical trial is designed to see if adding O-mab to Bendamustine is beneficial to treating follicular lymphoma.
I have to admit that choosing between the 2 treatment options is proving to be harder than I anticipated. If I choose to go with the clinical trial I will have to get a few more tests done - one is a bone marrow biopsy. The thought of having another bone marrow biopsy is not very appealing in that the 1st one I had was very painful. But I know I shouldn't make the treatment decision based on that factor alone.
So that's where I am right now - deciding between treatment options. If I go with Bendamustine alone, I will probably start chemo this week. If I go with the clinical trial, I'll most likely have the bone marrow biopsy later in the week.
I'll keep you updated . . .
Thanks again to my very kind and loving support network - your thoughts, well wishes, kind words, love and support make all the difference!!
Love,
Ness
Friday, July 23, 2010
Out of surgery
Hello all,
I'm at home resting after a successful surgery :) I had one of my lymph nodes on my right neck removed yesterday for a biopsy. The surgery was an outpatient procedure and only took a half hour. They did have to cut deeper than expected to remove the lymph node so I'm a bit more sore and tender, but overall no complaints.
I should hear the results of the biopsy late next week. So now the hard part . . . waiting.
I just received an unexpected phone call this evening from an old and great college friend whom I hadn't spoken with in years. It was great to catch up, Theresa!!
I'm at home resting after a successful surgery :) I had one of my lymph nodes on my right neck removed yesterday for a biopsy. The surgery was an outpatient procedure and only took a half hour. They did have to cut deeper than expected to remove the lymph node so I'm a bit more sore and tender, but overall no complaints.
I should hear the results of the biopsy late next week. So now the hard part . . . waiting.
I just received an unexpected phone call this evening from an old and great college friend whom I hadn't spoken with in years. It was great to catch up, Theresa!!
Monday, July 19, 2010
Consult with Surgeon
So I had a consult with a surgeon today regarding a lymph node biopsy. He seemed very optimistic that we will be able to get my lymphoma back in control and just hearing a doctor say that felt very relieving . . . so I'm very much hoping for the best.
My biopsy is scheduled for this Thursday (7/22) at 12 pm and I should have results in about a week regarding whether my lymphoma has transformed into a more aggressive type of lymphoma.
Thank you for all your kind words, thoughts and well wishes.
Love,
Ness
My biopsy is scheduled for this Thursday (7/22) at 12 pm and I should have results in about a week regarding whether my lymphoma has transformed into a more aggressive type of lymphoma.
Thank you for all your kind words, thoughts and well wishes.
Love,
Ness
Saturday, July 17, 2010
Hope
Hope is the thing with feathers
That perches in the soul.
And sings the tune
Without the words,
and never stops at all.
- Emily Dickinson
That perches in the soul.
And sings the tune
Without the words,
and never stops at all.
- Emily Dickinson
Friday, July 16, 2010
My very first blog post - The saga part I
Well, this is my first blog post ever. I hope this page will be a good way to keep family and friends informed of my ongoing battle with follicular lymphoma.
I was diagnosed with stage 4 Non-Hodgkin's Follicular Lymphoma in December 2005. I was 27 years old, fresh out of law school and working as an attorney for a law firm in Irvine. As with many types of cancers, there are the good and the bad parts of the diagnosis. The good parts about Follicular Lymphoma ("FL") are that it is highly treatable and the prognosis is good and getting better every year. The bad part is that, despite modern medicine, the disease remains incurable. This means that the disease can go into remission, but eventually it will come back.
Regarding my treatment, I took 6 rounds of a fairly intense chemo regimen along with Rituxan (R-CHOP), and after only five months of treatment I was declared to be in remission! I had achieved the glorious and wonderful state of REMISSION! :) :) :)
Post chemo brought with it a rough adjustment back to "normal" life. I had lost any semblance of what it was to be normal. But slowly, and after I had a chance to emotionally put my life back together, I began this wondrous, yet arduous, journey into what happens when you survive cancer. For one thing, I really started to look at the lessons that having cancer taught me. During my 4 years of remission, I grew into the person I am today. I learned at an early age many life lessons that most people don't realize until much later in life. For example, I learned that on my death bed I won't wish that I spent more time at the office. I learned how important it is to be true to yourself even if others don't agree with your decisions. And, I learned that life is a gift and that it is meant to be lived in the present. I had almost learned how to be "normal" again, meaning I was getting used to not being sick and beginning to think of myself as almost healthy.
That's when I discovered a new lump under my left jawbone, near my chin. The doctors hoped the lump was just a swollen salivary gland, but the pet and ct scans revealed that the lymphoma was back in 2 spots: (1) one spot under my left jawbone, and (2) one spot on the right side of my neck. Unfortuantely, this all just happened in February 2010. As you can probably tell, my new year didn't get off to such a good start, but I quickly began a Rituxan treatment program. Rituxan is a monoclonal antibody, that attacks and kills the specific cells in my body that cause FL. We believed the Rituxan was working as you could no longer feel the lump under my left jawbone after just a few treatments.
It takes 3-4 months for the Rituxan to have full efficacy in mybody. As a result, I just had a pet and ct scan performed. Unfortunately, the scans results showed that I now have a few affected nodes on the right side of my neck. So just two days ago, on Wed. 7/14/10, I found out that I am not in remission as we hoped and that I have new active lymphoma on the right side of my neck. My oncologist advised that one of the affected lymph nodes should be removed and biopsied to determine whether my FL has transformed into a more aggressive, fast growing type of lymphoma. The type of lymphoma I was originally diagnosed with (FL) is a less aggressive, slow growing type of lymphoma.
I have a consultation scheduled with a surgeon this coming Monday, July 19th. I will then schedule my biopsy and should have results about 10 days after that.
I am very much hoping that my lymphoma has not transformed and am eager to learn what my treatment options will be. The statistics still look good and I am hoping I will be in another remission again soon.
I will do my best to keep this blog updated with my ongoing battle. I have my armor on and am ready to fight. (Maybe, I am a Trojan on the inside)
I was diagnosed with stage 4 Non-Hodgkin's Follicular Lymphoma in December 2005. I was 27 years old, fresh out of law school and working as an attorney for a law firm in Irvine. As with many types of cancers, there are the good and the bad parts of the diagnosis. The good parts about Follicular Lymphoma ("FL") are that it is highly treatable and the prognosis is good and getting better every year. The bad part is that, despite modern medicine, the disease remains incurable. This means that the disease can go into remission, but eventually it will come back.
Regarding my treatment, I took 6 rounds of a fairly intense chemo regimen along with Rituxan (R-CHOP), and after only five months of treatment I was declared to be in remission! I had achieved the glorious and wonderful state of REMISSION! :) :) :)
Post chemo brought with it a rough adjustment back to "normal" life. I had lost any semblance of what it was to be normal. But slowly, and after I had a chance to emotionally put my life back together, I began this wondrous, yet arduous, journey into what happens when you survive cancer. For one thing, I really started to look at the lessons that having cancer taught me. During my 4 years of remission, I grew into the person I am today. I learned at an early age many life lessons that most people don't realize until much later in life. For example, I learned that on my death bed I won't wish that I spent more time at the office. I learned how important it is to be true to yourself even if others don't agree with your decisions. And, I learned that life is a gift and that it is meant to be lived in the present. I had almost learned how to be "normal" again, meaning I was getting used to not being sick and beginning to think of myself as almost healthy.
That's when I discovered a new lump under my left jawbone, near my chin. The doctors hoped the lump was just a swollen salivary gland, but the pet and ct scans revealed that the lymphoma was back in 2 spots: (1) one spot under my left jawbone, and (2) one spot on the right side of my neck. Unfortuantely, this all just happened in February 2010. As you can probably tell, my new year didn't get off to such a good start, but I quickly began a Rituxan treatment program. Rituxan is a monoclonal antibody, that attacks and kills the specific cells in my body that cause FL. We believed the Rituxan was working as you could no longer feel the lump under my left jawbone after just a few treatments.
It takes 3-4 months for the Rituxan to have full efficacy in mybody. As a result, I just had a pet and ct scan performed. Unfortunately, the scans results showed that I now have a few affected nodes on the right side of my neck. So just two days ago, on Wed. 7/14/10, I found out that I am not in remission as we hoped and that I have new active lymphoma on the right side of my neck. My oncologist advised that one of the affected lymph nodes should be removed and biopsied to determine whether my FL has transformed into a more aggressive, fast growing type of lymphoma. The type of lymphoma I was originally diagnosed with (FL) is a less aggressive, slow growing type of lymphoma.
I have a consultation scheduled with a surgeon this coming Monday, July 19th. I will then schedule my biopsy and should have results about 10 days after that.
I am very much hoping that my lymphoma has not transformed and am eager to learn what my treatment options will be. The statistics still look good and I am hoping I will be in another remission again soon.
I will do my best to keep this blog updated with my ongoing battle. I have my armor on and am ready to fight. (Maybe, I am a Trojan on the inside)
New Tattoos
Ok, so I had to add one more thing. When Michelle and I were on our way home from my oncologist's office after hearing the bad news, I decided to be brash and daring, to do something in the moment just because I wanted to. And you know what? It felt great!!!!!!!!!!!! We took a very sad day and for a few moments we were transported to happy land full of hope and perseverance. So that's what I got: 2 new tattoos!! I have one word on each foot: "hope" for me and the future, and "persevere" for my opa and as a reminder . . .
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