Hi Brianna!
It was good to talk to you. I hope you are enjoying your time out of the hospital. I know you have to go back in soon. I hope you are gaining some weight back and building your strength up for the next round of this fight!
Keep thinking happy thoughts and we'll be seeing you soon.
Uncle Brian
Saturday, August 25, 2007
Wednesday, August 15, 2007
Dialogue from Cancer Research Doctor
Thank you, your news was hopeful.
Brianna is 17 and was about to enter her senior year at Hayward High School. Last year, she lettered in soccer. This is so devastating to all of us because she was such a good athlete and scholar. She's been on the home instruction program since March. She originally went through 2 months of diagnosis from the local family care doctor of all kinds of bronchitis, asthma, etc before they sent her for chest xray. We're looking to the future now, hoping these next 2 rounds are going to do it! If they don't, you'll be hearing from me for the second opinion options. Thank you again for you expertise. Nancy
From: Steve Silletti >To: "Nancy Kalina" Subject: Re: request from your brother Brian Date: Tue, 14 Aug 2007 13:27:07 -0700
Hi Nancy,
I just spoke with our lymphoma specialist here at the Cancer Center. Although he is not a pediatric oncologist, he indicated to me that the regimen with which the group at Children's Hospital treated Brianna is likely the one they would've used here as well. Additionally, he thinks their approach to finding the tumor to be resistant is appropriately aggressive and also similar to what he would prescribe. As I'm sure you're aware, some patients respond better than others to these treatments.
As you might expect, he was very sorry to hear of the poor run Brianna is having, especially with regard to the secondary manifestations and physical issues, but didn't think there was anything amiss in the approach of the clinicians involved. He offered to be available for further consultation, although again stressed that he is not a pediatric specialist.
Also, although he has not heard of anything specifically wrong with Children's in Oakland, he admits it is not in his circle per se. However, his feeling is that making a change in treatment right now is a very major undertaking, especially if Brianna continues to be weak and injury-prone. On the other hand, if you are truly dissatisfied, his suggestion was to potentially arrange for a more thorough second opinion at UCSF Children's Hospital. I have friends at UCSF, and I could ask around if you'd like.
Sorry it's not better news at this point, though I guess it's nice to know the team isn't outright incompetent. That's something. One final question I forgot to ask originally--how old is Brianna?
Steve
On Aug 13, 2007, at 6:19 PM, Nancy Kalina wrote:
Dear Steve,
I would be very honored for your opinion on my daughter Brianna's diagnosis. I have tried to get your questions below answered the best I could and if they are not sufficient, please let me know.
specific diagnosis - Mediastinal mass 3/15/07 tumor sub-type - Difused large B cell Lymphoma/Non-Hodgkins stage - 3 regimen - CCG5961 ?
after 1st 4 rounds chemo, pet scan & biopsy. pet scan showed shrinkage to 3.5 x 1.5 cm, biopsy showed still live cells (I think it let more out). continued with 2 full rounds of high intensity AraC which was suppose to eliminate it to scar tissue, then pet scan again which was 42 days later. Pet scan then showed 3 more lymph node glands infected to form 1 large tumor in her chest again, 1 under her armpit & 1 small one attached to her collar bone. The children's regimen was supposed to be complete with 2 rounds of maintenance, and then we were hit with the awful pet scan results. She proceeded to get bacteria infection in her blood between those last 2 treatments that were treated with antibiotics but not before it ended her up in ICU 7/02 with blood pressure at 60 over 20 and fever of 104 that wouldn't break for hours.
Right now she has completed the first round of the adult regimen ANHL0121 (see attachment). The broviac they installed on 7/23 had the white line kinked or crimped in her vein and had to be replaced onto her left side 8/03 which left her in extreme pain on her whole left side, front and back. With decreasing blood counts, they gave her morphine. She then got mucasitis (sp), vomited up her NG tube, showed signs of 2 fungus nodules in her right lung and got a pulled hamstring on the way to the restroom in her hospital room. They have as of yesterday cut back the morphine basil and today, cut it off completely to see how she manages her pain. They've also stopped all antibiotics & antifungal medicines. She'll still receive her GCSF shot tonight, but they expect her counts to be good enough by tomorrow to let her come home until Friday or maybe Monday and right back in to start the 2nd round. When its complete and her counts come back up after round 2, they want to remove some stem cells, freeze them to give them back to her after round 3.
This seems so overwhelming, I dont know how's she's managing to get by, I really mean me. I'm sorry this has taken so long for me to get back to you but its been a rough couple weeks with her so ill.
I think they want the next pet scan scheduled for Wed 8/15 to shed some light on what the last round of chemo has done to the tumor and go from there and to not wait so long between scans, which made me feel a little better.
Her main doctor is Jacob Garcia 510-428-3000. I wasn't sure if you were going to contact him or not. I feel pretty confident at Children's Hospital Oakland, but definitely curious to hear your thoughts.
Any consideration given to Brianna and your valuable time is greatly appreciated by the whole family.
Thank you so much!
Nancy Kalina
510-377-3224
From: Steve Silletti
To: nkalina434@hotmail.com Subject: request from your brother Brian
Date: Thu, 2 Aug 2007 10:04:43 -0700
Hi Nancy,
Your brother Brian asked me to contact you regarding your daughter's treatment for lymphoma.
As I told Brian, I can make some calls to either check out the value of the current therapeutic approach and the doctors involved, or potentially help you find someone highly reputable in the area (or elsewhere if it's deemed warranted) from whom you could seek a second opinion in person.
If you'd like me to check into this more, it would be helpful to have as much information as possible. It would be very helpful if you could tell me the specific diagnosis, including tumor subtype, grade, stage, molecular markers (if known), and anything else you were provided. Additionally, information on duration of illness prior to treatment (and symptoms), and the therapeutic regimen (usually an acronym like R-CHOP), including how long she's been on it and any test results pre- and post-treatment would be very helpful.
Finally, is there something specific that you are dissatisfied with about her current care?
As soon as I have this information I can make a few calls on your behalf.
Steve
----------------------------------------------------------------------
Steven A. Silletti, Ph.D. >>>American Cancer Society Research Scholar Moores UCSD Cancer Center 3855 Health Sciences Drive #0803 La Jolla, California 92093-0803 Office: (858) 822-0787 Lab: (858) 822-0837 Fax: (858) 534-7628 email: ssilletti@ucsd.edu http://cancer.ucsd.edu/summaries/ssilletti.asp For FedEx Deliveries: Moores UCSD Cancer Center 3855 Health Sciences Drive Room 2314, Bay R/RR La Jolla, CA 92093-0803
Brianna is 17 and was about to enter her senior year at Hayward High School. Last year, she lettered in soccer. This is so devastating to all of us because she was such a good athlete and scholar. She's been on the home instruction program since March. She originally went through 2 months of diagnosis from the local family care doctor of all kinds of bronchitis, asthma, etc before they sent her for chest xray. We're looking to the future now, hoping these next 2 rounds are going to do it! If they don't, you'll be hearing from me for the second opinion options. Thank you again for you expertise. Nancy
From: Steve Silletti >To: "Nancy Kalina" Subject: Re: request from your brother Brian Date: Tue, 14 Aug 2007 13:27:07 -0700
Hi Nancy,
I just spoke with our lymphoma specialist here at the Cancer Center. Although he is not a pediatric oncologist, he indicated to me that the regimen with which the group at Children's Hospital treated Brianna is likely the one they would've used here as well. Additionally, he thinks their approach to finding the tumor to be resistant is appropriately aggressive and also similar to what he would prescribe. As I'm sure you're aware, some patients respond better than others to these treatments.
As you might expect, he was very sorry to hear of the poor run Brianna is having, especially with regard to the secondary manifestations and physical issues, but didn't think there was anything amiss in the approach of the clinicians involved. He offered to be available for further consultation, although again stressed that he is not a pediatric specialist.
Also, although he has not heard of anything specifically wrong with Children's in Oakland, he admits it is not in his circle per se. However, his feeling is that making a change in treatment right now is a very major undertaking, especially if Brianna continues to be weak and injury-prone. On the other hand, if you are truly dissatisfied, his suggestion was to potentially arrange for a more thorough second opinion at UCSF Children's Hospital. I have friends at UCSF, and I could ask around if you'd like.
Sorry it's not better news at this point, though I guess it's nice to know the team isn't outright incompetent. That's something. One final question I forgot to ask originally--how old is Brianna?
Steve
On Aug 13, 2007, at 6:19 PM, Nancy Kalina wrote:
Dear Steve,
I would be very honored for your opinion on my daughter Brianna's diagnosis. I have tried to get your questions below answered the best I could and if they are not sufficient, please let me know.
specific diagnosis - Mediastinal mass 3/15/07 tumor sub-type - Difused large B cell Lymphoma/Non-Hodgkins stage - 3 regimen - CCG5961 ?
after 1st 4 rounds chemo, pet scan & biopsy. pet scan showed shrinkage to 3.5 x 1.5 cm, biopsy showed still live cells (I think it let more out). continued with 2 full rounds of high intensity AraC which was suppose to eliminate it to scar tissue, then pet scan again which was 42 days later. Pet scan then showed 3 more lymph node glands infected to form 1 large tumor in her chest again, 1 under her armpit & 1 small one attached to her collar bone. The children's regimen was supposed to be complete with 2 rounds of maintenance, and then we were hit with the awful pet scan results. She proceeded to get bacteria infection in her blood between those last 2 treatments that were treated with antibiotics but not before it ended her up in ICU 7/02 with blood pressure at 60 over 20 and fever of 104 that wouldn't break for hours.
Right now she has completed the first round of the adult regimen ANHL0121 (see attachment). The broviac they installed on 7/23 had the white line kinked or crimped in her vein and had to be replaced onto her left side 8/03 which left her in extreme pain on her whole left side, front and back. With decreasing blood counts, they gave her morphine. She then got mucasitis (sp), vomited up her NG tube, showed signs of 2 fungus nodules in her right lung and got a pulled hamstring on the way to the restroom in her hospital room. They have as of yesterday cut back the morphine basil and today, cut it off completely to see how she manages her pain. They've also stopped all antibiotics & antifungal medicines. She'll still receive her GCSF shot tonight, but they expect her counts to be good enough by tomorrow to let her come home until Friday or maybe Monday and right back in to start the 2nd round. When its complete and her counts come back up after round 2, they want to remove some stem cells, freeze them to give them back to her after round 3.
This seems so overwhelming, I dont know how's she's managing to get by, I really mean me. I'm sorry this has taken so long for me to get back to you but its been a rough couple weeks with her so ill.
I think they want the next pet scan scheduled for Wed 8/15 to shed some light on what the last round of chemo has done to the tumor and go from there and to not wait so long between scans, which made me feel a little better.
Her main doctor is Jacob Garcia 510-428-3000. I wasn't sure if you were going to contact him or not. I feel pretty confident at Children's Hospital Oakland, but definitely curious to hear your thoughts.
Any consideration given to Brianna and your valuable time is greatly appreciated by the whole family.
Thank you so much!
Nancy Kalina
510-377-3224
From: Steve Silletti
To: nkalina434@hotmail.com Subject: request from your brother Brian
Date: Thu, 2 Aug 2007 10:04:43 -0700
Hi Nancy,
Your brother Brian asked me to contact you regarding your daughter's treatment for lymphoma.
As I told Brian, I can make some calls to either check out the value of the current therapeutic approach and the doctors involved, or potentially help you find someone highly reputable in the area (or elsewhere if it's deemed warranted) from whom you could seek a second opinion in person.
If you'd like me to check into this more, it would be helpful to have as much information as possible. It would be very helpful if you could tell me the specific diagnosis, including tumor subtype, grade, stage, molecular markers (if known), and anything else you were provided. Additionally, information on duration of illness prior to treatment (and symptoms), and the therapeutic regimen (usually an acronym like R-CHOP), including how long she's been on it and any test results pre- and post-treatment would be very helpful.
Finally, is there something specific that you are dissatisfied with about her current care?
As soon as I have this information I can make a few calls on your behalf.
Steve
----------------------------------------------------------------------
Steven A. Silletti, Ph.D. >>>American Cancer Society Research Scholar Moores UCSD Cancer Center 3855 Health Sciences Drive #0803 La Jolla, California 92093-0803 Office: (858) 822-0787 Lab: (858) 822-0837 Fax: (858) 534-7628 email: ssilletti@ucsd.edu http://cancer.ucsd.edu/summaries/ssilletti.asp For FedEx Deliveries: Moores UCSD Cancer Center 3855 Health Sciences Drive Room 2314, Bay R/RR La Jolla, CA 92093-0803
Wednesday, August 8, 2007
Hi Brianna!
Your Aunt Mike and I are coming up to see you next month. Hang in there and start feeling better ok!
Are you getting any exercise? I hope so. You need to build back your strength the treatment is taking out of you. And keep eating too. It's very important you get your nutrition!
We love you!
Uncle Brian
Your Aunt Mike and I are coming up to see you next month. Hang in there and start feeling better ok!
Are you getting any exercise? I hope so. You need to build back your strength the treatment is taking out of you. And keep eating too. It's very important you get your nutrition!
We love you!
Uncle Brian
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