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09-22-2009, 12:17 PM
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#1
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Re: Cancer is back...I just knew it.
Chelee,
John Link was someone who stepped up and wrote several books that talk about breast cancer diagnosis and how to deal with it from the standpoint of how things are, not just how they should be. I've never known anyone who went to him, but I thought his books were more on target in that respect.
A.A.
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09-22-2009, 12:38 PM
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#2
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Cancer is back...I just knew it.
Joe, Thank you for the referral. I've been to the City of Hope (COH) before & did see one of there onc...but breast cancer was not their speciality. I've heard of Dr. Link and actually know of someone that was very happy with him.
Last time I called UCLA they said Dr. Slamon was not seeing HMO patients...I am now wondering if that's true? I think I'd like to go that way if possible. Since I'm Her2 I would really like a 2nd opinion with him. (I plan on getting two if not three this time around.) My cancer place played on my fears the first time and I didn't get a 2nd opinion. That will not happen again!
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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09-22-2009, 12:56 PM
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#3
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Cancer is back...I just knew it.
AlaskaAngel, You are so right when it comes to the fear of the unknown. I feel sick right now...and it doesn't help that my husband left me here alone to deal with this.
He did say he would take me where ever I needed to go. When treatment starts its like living at the cancer center...so if I change I need to find one that is within reasonable driving distance. I'm just so over whelmed right now and can't even think straight...I don't know what I'm going to do. I'm still so angry at my oncologist. The minute my TM'ers started to go up exactly on 7-22-08...which was 4 months after completing Herceptin...I mentioned several problems I was having just to be blow off. I begged to stay on Herceptin and I almost can't help but wonder had I got to stay on it if it wouldn't of keep the cancer away? (I guess I'll never know.) I see my onc today at 2:30 and then I'll find out how much chest wall & axilla involvement? That's what I'm really worried about...I only have 30% use of right lung and 40% of my left as it is.
I will be demanding a brain MRI to be done asap also! I've had really bad headaches and have been on the clumsy side which is not like me. I am beyond stressed.
Thanks Alaska for your kind comments.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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09-22-2009, 12:57 PM
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#4
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Senior Member
Join Date: Sep 2006
Location: Marengo, IL
Posts: 518
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Re: Cancer is back...I just knew it.
Dear Chelee,
I am so sorry to hear your news. I am hoping once you see your onc today and talk you will get some direction. This website will help you through, it is already with Joe's suggestions and others.
Maybe your husband also needs some time to settle in with the news. If he was supportive before I am sure he will be there for you again. Give him some time. In the meantime remember we are here. Let us know what you found out today and your future plans.
Many prayers are coming your way.
Love,
Donna
__________________
Donna
Crystal Lake, IL
Diagnosed 8/4/06 at age 54
Lumpectomy 8/30/06
Stage llA, grade 3, ER/PR-, Her2++
1.7 cm tumor, 1+ lymph node out of 9
Completed 4 A/C, & 4 Taxol with Herceptin
36 rads completed 5/16/07
Mammograms, 7/07 clear
fractured ribs in radiated area 10/07
Finished Herceptin 12/27/07
Mammogram,CT,tumor markers 1/08 - small lung nodules in radiated area, repeated tests 3/08 stable
Mammogram,CT ,tumor markers 6/08 stable
NED 2 years!!
3 years !!!
4years!!!!
4 years, 10 months and 8 day NED, calling it 5 years!!!
Official 5 years 8/30/2011
8/31/ 2012 - 6 years!!!!!!
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09-22-2009, 01:06 PM
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#5
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Cancer is back...I just knew it.
Donna, My husband helped me alot through my first fight...but he was pretty angry the entire time...made it hard on me. He knows how important it is for me to have a 2nd set of ears today at this appt of all the times. There's alot to take in today and I'm not sure I'll catch it all since I'm so stressed out. I can't believe he decided to move a TV for a friend over going with me. I'm sure if he told his friend my cancer was back this guy would of said you need to be with your wife...this is unbelieveable. They could of moved his tv any time...it wasn't that important...obviously I'm not either. (Sorry...I'm just venting since I have no one else.)
Thanks for the prayers...I need all of them I can get.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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