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Old 12-11-2008, 06:07 AM   #1
eric
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Dr in Dana Farber for Multiple Myeloma?

Was wondering if anyone knew of a doc they could recommend? My Aunt has just been diagnosed and I'd like her to get a 2nd opinion at a major facility. She lives in CT and doesn't want to go to Sloan.

Thank you,
Eric
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Old 12-11-2008, 07:38 AM   #2
Believe51
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Eric, I will try to work on that for her, just a matter of getting ahold of a contact there. If I can be of assistance at the time of her appointment (Ed needs Gamma again), I will meet her if she needs company. I'll be thinking of her today on my quest. This is a great place for a second opinion, Ed and I love them there. Bet you someone responds with a doctor before I do, knowing this great family of ours. Love em all!! Talk very soon.>>Believe51
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 12-11-2008, 11:53 AM   #3
Believe51
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Eric

Hey buddy, have not heard back with a specific doctor yet, but want to give you what I have in my records:

Center For Hematologic Oncology

"The Jerome Lipper Center For Mutiple Myeloma" (this is the specialty center)
at:
Dana Farber/Brigham & Womens Cancer Center

Contact: Hematologic Oncology

New Patient #
(617) 632-5138

Registered Patient#
(617) 632-6140

Wish I remembered her doctor's name but being around so much radiation exposure has deemed me senseless...LOL!>>Believe51
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 12-11-2008, 08:30 PM   #4
eric
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Believe51. Thanks so much for your consideration and efforts. You're wonderful! Thank you
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Old 12-11-2008, 09:43 PM   #5
flynny
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Hi Eric,

I go to Dana Farber and I am very happy with the treatment facility there, as well as the doctors, nurses, and staff. They are just incredible. My doctor is Dr. Nancy Lin. I wish I knew a doctor who worked specifically to which you are asking. My thoughts are with you and if there is anything I can do, please do not hesitate to ask.
__________________
-Sarah-

Jan '07 felt lump (PCP "thought" it was a cyst)
Nov '07 "bloody nipple discharge" (OB-GYN "thought" I had fibrocystic breasts and told me to take 400 IU's of Vitamin E)
Note: Mother was dx w/BC in 2004 (ER/PR+ & HER2+) & mets to brain April 2007 (she passed away June 17, 2008)
2/1/08: Biopsy Dx: DCIS (age 34)
2/22/08: Surgery R-side Mast
2/28/08: 1st Path Rpt Dx: IDC 1.8cm tumor & DCIS 2.1cm
2nd Path Rep DFCI - IDC (0.9cm) & DCIS (2.1cm)
Stage 1b/Gr 3; ER+(5%), PR+(2%), HER-2+++
5/5 nodes NEG; Clear Margins
Chemo: AC 4 rnds (1st one 3/31/08) finished 6/2/08
TH (Taxol/Hercepin) 12 weeks (1st one 6/25/08) finished 9/8/08
Herceptin 9 mos (every 3 weeks) finished 6/8/09
BRCA 1/2 NEG
Bio: Age 39, married to James 1999, 2 boys 12 & 10 yo
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Old 12-12-2008, 06:34 AM   #6
Believe51
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We once seen Dr. Lin for a second opinion on treatment regime options and a review. How long have you been seeing her?>>Believe51
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 12-12-2008, 10:01 AM   #7
Believe51
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Thumbs up Eric

If I was to contact them at Dana Farber and get directed to:

Ken Anderson (Director)
or
Paul Richardson (Clinical Director)

Good luck with all your endeavors. Wish I had a return call from my friend, I am really starting to get worried about her!! Uggh! I'll keep you both in prayers!!>>Believe51
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 12-13-2008, 11:02 PM   #8
flynny
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Believe51,

Sorry for the delay in replying to you. We were out of power from early Friday morning until this evening. At least we were warm by our wood stove.

Long story short my mother was seeing Dr. Lin from April 2007 (this is when she was dx with mets to the brain). In January 2007 I found a lump, but was "blown off" by my primary doc. Anyway, Dr. Lin became my doctor once I was dx this year. What were your thoughts of her?
__________________
-Sarah-

Jan '07 felt lump (PCP "thought" it was a cyst)
Nov '07 "bloody nipple discharge" (OB-GYN "thought" I had fibrocystic breasts and told me to take 400 IU's of Vitamin E)
Note: Mother was dx w/BC in 2004 (ER/PR+ & HER2+) & mets to brain April 2007 (she passed away June 17, 2008)
2/1/08: Biopsy Dx: DCIS (age 34)
2/22/08: Surgery R-side Mast
2/28/08: 1st Path Rpt Dx: IDC 1.8cm tumor & DCIS 2.1cm
2nd Path Rep DFCI - IDC (0.9cm) & DCIS (2.1cm)
Stage 1b/Gr 3; ER+(5%), PR+(2%), HER-2+++
5/5 nodes NEG; Clear Margins
Chemo: AC 4 rnds (1st one 3/31/08) finished 6/2/08
TH (Taxol/Hercepin) 12 weeks (1st one 6/25/08) finished 9/8/08
Herceptin 9 mos (every 3 weeks) finished 6/8/09
BRCA 1/2 NEG
Bio: Age 39, married to James 1999, 2 boys 12 & 10 yo
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Old 12-16-2008, 10:35 AM   #9
Believe51
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Talking Hey Sarah

Although I do not like to say a bad word about anyone I must say that I was not overly impressed, but this is not a rather fair assumption. I know doctors are busy there trying to save lives but she read his complete complicated journey in 5 minutes, gave a quick physical and made her judgements (which is why we were there). We felt rushed and cheated that day. Hope I am not being too critical since we really did like her. We already had a treatment plan in the back of our heads and when we went there and Dr Lin basically agreed with what we already felt was the direction we needed to head. She discussed the other possible options that we could explore and those too were in the back of our minds. It is not fair for me to judge her fully since we do not have her in our journey; we did enjoy her personality and spirit. Generally speaking we did like her as a whole. She is a very educated woman who focuses alot of her time to mets and clinical trials at Dana Faber. All in all, we went there for a second opinion about our next course of action and she did just that, rushed or not. Ed and I will be back and he will be seeing Dr Winer, which was the doctor who originally was supposed to meet with us.

It pleases me to see that she is your doctor, I hope you are happy with her. Her education and demeanor, I feel is for the best in your journey. She will guide you assertively to where you need to be. Hang tough Sarah. And every time we go there we will be thinking of you!! Smiling>>Believe51
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 12-25-2008, 06:27 PM   #10
karenfritzohare
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Sorry, I just saw this.
My husband is just finishing 6 rounds of chemo. at a local hospital for Multiple Myeloma.
We have met with Dr. Robert Schlossman at Dana Farber and he will be recieving a stem cell transplant soon.
Dr.'s Richardson and Anderson are the gurus of MM and still at DF, but I think if you google Dr. Schlossman you will see they are all connected.
Multiple Myeloma is even scarier than breast cancer.
I am praying for you and yours.
Karen
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Old 12-25-2008, 08:06 PM   #11
eric
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Thank you Karen.
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Old 12-26-2008, 08:12 AM   #12
karenfritzohare
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You are most welcome.
Please know that my husband has breezed through the chemo.
Believe it or not thalidomide is the new addition to treating MM. With the stem cell transplants and new drugs there are great strides being made for MM patients.
Please don't look at the statistics for the past 10 years. They are breaking new ground and the odds are better EVERY DAY!!
Good Luck to you.
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Old 12-26-2008, 09:27 AM   #13
Believe51
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Thumbs up

Karen, thank you also from me. This is more scary than breast cancer is and I am so pleased to see the groundbreaking they are making. My girlfriend has been sick for some time nowTell your Dear Husband that I have said kudos to him for his completion of chemo. Keep fighting the good fight, both of you. May 2009 be your best year ever, may you receive the health and time that you both are fighting for!>>Believe51
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 02-10-2009, 09:22 PM   #14
karenfritzohare
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Just a little update.
I do hope you were able to find a doctor at Dana Farber you like. We are feeling very good about Dr. Schlossman and his team.
My husband did his Hickman catheter implant yesterday and stem cell harvest today at DF. They wanted 5 million stem cells for his transplant. They got 19.62 million!
Keep your fingers crossed for us next week.

Love and hope to all of you.
K
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Old 12-27-2008, 06:53 PM   #15
Janelle
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Eric,
I'm so sorry to hear about your aunt's diagnosis. I have a friend in Los Angeles who is a 20 year breast cancer survivor (she was diagnosed at age 30 with breast cancer) and was diagnosed at age 37 with multiple myeloma.

My friend's doctor is in Los Angeles but he specializes in multiple myeloma. His name is Dr. James Berenson. I've met with Dr. Berenson personally as I went to an appt with my friend after we thought she came out of remission recently (false alarm by the way). She's been in remission for 13 years! (Sadly, Dr. Berenson told me he suspects that my friend's silicone implants triggered her multiple myeloma which was hard to hear for her and me since I also have silicone implants too).

Also, I have a good friend in NYC whose father was treated for multiple myeloma. Her dad passed away of a heart attack but my friend joined "Team Continuum" and ran the NYC marathon to raise money for blood cancer patients. I think you should check out this link: www.teamcontinuum.net. Check out the board of directors and look up Paul, the team leader. Paul Nicholls started the team and is a multiple myeloma survivor. My friend, Lauren, told me he will talk to anyone about multiple myeloma when I reached out to her for help for my other friend, Cheryl. The board of directors also contains names of doctors not affliliated with Sloan. Please PM me if you want more info.

Best,
Janelle
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Janelle
Diagnosed October 2006 at age 37 wtih grade 3 IDC and high grade DCIS
Stage 1c triple positive, no node involvement but
vascular invasion
multifocal disease
Lumpectomy November, 2006
A/C every 3 weeks (started Jan., 2007 and finished March 2007); followed weekly Taxol (finished June 2007) concurrent with Herceptin (finished March 2008);
Bilateral Mast with immediate recon in Sept 2007; finished recon Dec. 2007
Started 5 years of tamoxifen Nov. 2007; started peptide vaccine clinical trial at MD Anderson October 2008 and finished active part of trial in April 2009 (monthly injections of AE37 peptitde (HLA type specific) with GM-CSF or GM-CSF alone depending on if I was in experimental or control group); started Zometa infusions June 25, 2009- 4mg every 6 months for 3 years (taking it "off-label" to try to prevent mets)
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Old 04-12-2010, 07:44 PM   #16
karenfritzohare
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Re: Dr in Dana Farber for Multiple Myeloma?

It has been a very long year. My husband died at Dana Farber January 21, 2010. His Multiple Myeloma was in remission after the stem cell transplant last February. We thought things wer going great until September. It took so long to diagnose his new cancer. Angioimmunoblastic t cell lymphoma.
Imagine a new primary 6months after transplant. With my breast cancer this was 3 cancers in 3 years in one home.
Unreal.
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Old 04-12-2010, 07:48 PM   #17
Janelle
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Re: Dr in Dana Farber for Multiple Myeloma?

Oh, I'm so sorry. This is just unimaginable like you said. I'm wishing you peace and much strenght in this devestating time.
__________________
Janelle
Diagnosed October 2006 at age 37 wtih grade 3 IDC and high grade DCIS
Stage 1c triple positive, no node involvement but
vascular invasion
multifocal disease
Lumpectomy November, 2006
A/C every 3 weeks (started Jan., 2007 and finished March 2007); followed weekly Taxol (finished June 2007) concurrent with Herceptin (finished March 2008);
Bilateral Mast with immediate recon in Sept 2007; finished recon Dec. 2007
Started 5 years of tamoxifen Nov. 2007; started peptide vaccine clinical trial at MD Anderson October 2008 and finished active part of trial in April 2009 (monthly injections of AE37 peptitde (HLA type specific) with GM-CSF or GM-CSF alone depending on if I was in experimental or control group); started Zometa infusions June 25, 2009- 4mg every 6 months for 3 years (taking it "off-label" to try to prevent mets)
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Old 04-13-2010, 07:17 AM   #18
Bill
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Re: Dr in Dana Farber for Multiple Myeloma?

I'm sorry to hear of your loss, Karen. Please accept my thoughts and prayers.
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Old 04-13-2010, 01:29 PM   #19
ammebarb
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Re: Dr in Dana Farber for Multiple Myeloma?

I'm so sorry for your loss.

Barb A.
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Old 04-14-2010, 08:01 PM   #20
Soccermom
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Re: Dr in Dana Farber for Multiple Myeloma?

Dear Karen,
I am so sorry ...
Marcia
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