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Chelee · 09-27-2009, 02:03 PM

Sarah you ask how I'm doing? I am just feeling so overwhelmed and have so many things going thur my mind of what I need to do...and how I'm going to get it done. Plus all the questions my onc won't answer. I know I won't feel any better at all till I talk to a "couple" other onc. One is Dr. Mortimer that Joe referred me too...hopefully they will get that set-up this week! They are already past the 72 hrs they had to get it done. I called the case manager at my place & her excuse for why it's not set-up already is because I saw a different onc at City of Hope within the last 18 months so that onc has to release me to see Dr. Mortimer. Well that shold NOT take this long...I'm in a hurry. (What about laws...it said 72 hrs...period!)

All these delays and just more added stress. Then I am a bit nervous about starting Herceptin tomorrow "without" a port...but yet I want to get started now. They keep saying Herceptin one time without a port won't damage my veins like other chemo. (I hope that's true...my veins are shot as is.) I get my port Tues., the day after Herceptin. Seems they did this backwards.

I did go on Saturday & had my ECHO...couldn't get a read on the tech to see if my heart is in good shape? Last time I did Herceptin my EF was always high...70% & I believe 65% was the lowest it went...so I hope its still fine. If I had my game plan I'd feel better I think? Trying to figure out which onc's to get opinions from...& being realisitic about how far I can drive back and forth for chemo is just stressing me out. So many things to think about AND do. I want to get at least a "Consult" with Dr. Slamon if at all possible..that would really give me some peace of mind. I've had such a great response from so many of you on the board and via PM with good idea's and referrals to great oncologist's to see. I'm over whelmed...in a good way. But yet it's hard to pick which ones to go too. I still have to call my HMO directly because the case manager at the hospital told me flat out I could NOT have more then one 2nd opinion. I find that HARD to believe. They just don't want me doing that. I'm just at my wits end about now. This entire last wk has been a nightmare to me. My appetite has been gone & I'm dropped weight & having trouble sleeping since this all started.

Until I get a 2nd opinion I won't know anything and I think thats whats causing me the most anxiety. Navelbine & Herceptin was mentioned...along with Taxotere, Tykerb or Avastin to add to the Herceptin (alone) of course. Or a clinical trial. I first need to know if I really have chest wall recurrance...my PET/CT doesn't sound like it to me...it's my seroma that's been there forever! But right axilla does suggest neoplasms.

I want to know what they can do about that since I can't have rads? This waiting for 2nd opinions is going to kill me first. I'm just rambling like always...not to stressed out. Sorry!

Chelee

09-27-2009, 02:03 PM	#70
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	Re: Cancer is back...I just knew it. Sarah you ask how I'm doing? I am just feeling so overwhelmed and have so many things going thur my mind of what I need to do...and how I'm going to get it done. Plus all the questions my onc won't answer. I know I won't feel any better at all till I talk to a "couple" other onc. One is Dr. Mortimer that Joe referred me too...hopefully they will get that set-up this week! They are already past the 72 hrs they had to get it done. I called the case manager at my place & her excuse for why it's not set-up already is because I saw a different onc at City of Hope within the last 18 months so that onc has to release me to see Dr. Mortimer. Well that shold NOT take this long...I'm in a hurry. (What about laws...it said 72 hrs...period!) All these delays and just more added stress. Then I am a bit nervous about starting Herceptin tomorrow "without" a port...but yet I want to get started now. They keep saying Herceptin one time without a port won't damage my veins like other chemo. (I hope that's true...my veins are shot as is.) I get my port Tues., the day after Herceptin. Seems they did this backwards. I did go on Saturday & had my ECHO...couldn't get a read on the tech to see if my heart is in good shape? Last time I did Herceptin my EF was always high...70% & I believe 65% was the lowest it went...so I hope its still fine. If I had my game plan I'd feel better I think? Trying to figure out which onc's to get opinions from...& being realisitic about how far I can drive back and forth for chemo is just stressing me out. So many things to think about AND do. I want to get at least a "Consult" with Dr. Slamon if at all possible..that would really give me some peace of mind. I've had such a great response from so many of you on the board and via PM with good idea's and referrals to great oncologist's to see. I'm over whelmed...in a good way. But yet it's hard to pick which ones to go too. I still have to call my HMO directly because the case manager at the hospital told me flat out I could NOT have more then one 2nd opinion. I find that HARD to believe. They just don't want me doing that. I'm just at my wits end about now. This entire last wk has been a nightmare to me. My appetite has been gone & I'm dropped weight & having trouble sleeping since this all started. Until I get a 2nd opinion I won't know anything and I think thats whats causing me the most anxiety. Navelbine & Herceptin was mentioned...along with Taxotere, Tykerb or Avastin to add to the Herceptin (alone) of course. Or a clinical trial. I first need to know if I really have chest wall recurrance...my PET/CT doesn't sound like it to me...it's my seroma that's been there forever! But right axilla does suggest neoplasms. I want to know what they can do about that since I can't have rads? This waiting for 2nd opinions is going to kill me first. I'm just rambling like always...not to stressed out. Sorry! 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.