HER2 Support Group Forums - View Single Post

Chelee · 06-11-2006, 11:06 PM

I wanted to thank all of you the replied as I am really feeling down tonight. This is the worse I have been since I was first DX with Her2. Usually it passes after a good cry...but not tonight. Then of course I had to take the Decadron tonight and I hate that because I need to be up so EARLY and with the Decadron as you all know its almost impossible to sleep.

But I sure appreciate all the words of encouragment...and your support. I really needed it more tonight there ever before.

Jayne, I think your right about when I person is ending treatment...its like your not doing anything to fight off the cancer. I liked all your suggestions about going shopping and such...but after my first oncologist decided NOT to give me Neulasta...I had lung damage. I have been on oxygen since Feb. 23rd. I even carry a portable with me to my appointments. I am getting a little better and don't have to use it as much...but since the lung damage it has made me MORE house bound. (That alone has probably added to a big degree to the way I am feeling.) I just go to bed, get up and go to appointments...or sit and do things here at home. I never get to go any where anymore thanks to my first oncologist.

Also Jayne, I have to agree with you that having a good relationship with ones oncologist is so important. My first one I really did like...then after being with him about a month...all kinds of problems came up. He never listened to me. Never gave me Neulasta or Procrit. Heck..I knew nothing about those drugs either at the time...he just let me feel bad all the time and landed me in hospital. So I switched doctors...and the new one was so much better. But I have had her about 4 months now and she just doesn't ever fully answer my questions. Plus I see a pattern of her trying to avoid any and all questions. I didn't notice it at first. She is so vague when I ask her anything. The ONLY way I find anything out about my actually prognosis is from THIS BOARD. I am not kidding. I have to spend hours online researching my own prognosis since they WON'T tell me anything. It doesn't seem right that they can get away with that.

Makes me wonder what she knows and doesn't want to tell me? I see SO MANY posts like the one you wrote where your Mom has a great oncologist and he always says the right things. Plus he is encouraging. The two I have had in the GROUP I am stuck in...they WON'T tell me anything even remotely encouraging about my bc and prognosis. I have told them both I am the type of person that WANTS to know exactly what I am dealing with...and NOT to hold back anything. But they still have told me nothing. Its like pulling teeth to find anything out and I take my husband with me every appointment. He isn't shy and he speaks right up...he can't get any thing out of them either!! Its frustrating. I don't like it that I can't really fully trust them. Lets say they AREN'T hiding anything from me....don't they realize by saying nothing they make things worse.

Anyway...I don't want to bother anyone...this is my problem. I have already wrote TOO LONG of a post again. I am just still so nervous about tomorrow. I will just try to think positive and probably tomorrow when I get home I will wonder WHY I was so stressed and laugh at myself for worrying myself silly over nothing. This is a long journey for all of us...some times its easy...and others times not so. But this too I will push my way through. I have been through to much already to give up now.

Lisa, Sue, Bev & Jayne, I think its like you all said. I feel like my safety net is gone. Its pretty scary. Especially when I CAN'T get a straight answer out of anyone down there and I dont know why? I do have a second opinion coming up June 27th at a WELL KNOWN cancer center. I can't wait to see what they think about my over all treatment..and see if they can tell me anything.

Thanks Sue for sharing how you felt the day of your last treatment. I guess this is normal in many cases. This is just alot for anyone to go through...its bound to catch up with us at one time or another. Its just that I had been doing pretty good until the last two days. But I will take a deep breath and put one foot in front of the other and get on with it. I got through everything else...why I feel like I won't tomorrow I guess is ridiculous. Thanks again to all of you for your support. You are all so great! I really appreciate it.

Chelee

06-11-2006, 11:06 PM	#7
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	I wanted to thank all of you the replied as I am really feeling down tonight. This is the worse I have been since I was first DX with Her2. Usually it passes after a good cry...but not tonight. Then of course I had to take the Decadron tonight and I hate that because I need to be up so EARLY and with the Decadron as you all know its almost impossible to sleep. But I sure appreciate all the words of encouragment...and your support. I really needed it more tonight there ever before. Jayne, I think your right about when I person is ending treatment...its like your not doing anything to fight off the cancer. I liked all your suggestions about going shopping and such...but after my first oncologist decided NOT to give me Neulasta...I had lung damage. I have been on oxygen since Feb. 23rd. I even carry a portable with me to my appointments. I am getting a little better and don't have to use it as much...but since the lung damage it has made me MORE house bound. (That alone has probably added to a big degree to the way I am feeling.) I just go to bed, get up and go to appointments...or sit and do things here at home. I never get to go any where anymore thanks to my first oncologist. Also Jayne, I have to agree with you that having a good relationship with ones oncologist is so important. My first one I really did like...then after being with him about a month...all kinds of problems came up. He never listened to me. Never gave me Neulasta or Procrit. Heck..I knew nothing about those drugs either at the time...he just let me feel bad all the time and landed me in hospital. So I switched doctors...and the new one was so much better. But I have had her about 4 months now and she just doesn't ever fully answer my questions. Plus I see a pattern of her trying to avoid any and all questions. I didn't notice it at first. She is so vague when I ask her anything. The ONLY way I find anything out about my actually prognosis is from THIS BOARD. I am not kidding. I have to spend hours online researching my own prognosis since they WON'T tell me anything. It doesn't seem right that they can get away with that. Makes me wonder what she knows and doesn't want to tell me? I see SO MANY posts like the one you wrote where your Mom has a great oncologist and he always says the right things. Plus he is encouraging. The two I have had in the GROUP I am stuck in...they WON'T tell me anything even remotely encouraging about my bc and prognosis. I have told them both I am the type of person that WANTS to know exactly what I am dealing with...and NOT to hold back anything. But they still have told me nothing. Its like pulling teeth to find anything out and I take my husband with me every appointment. He isn't shy and he speaks right up...he can't get any thing out of them either!! Its frustrating. I don't like it that I can't really fully trust them. Lets say they AREN'T hiding anything from me....don't they realize by saying nothing they make things worse. Anyway...I don't want to bother anyone...this is my problem. I have already wrote TOO LONG of a post again. I am just still so nervous about tomorrow. I will just try to think positive and probably tomorrow when I get home I will wonder WHY I was so stressed and laugh at myself for worrying myself silly over nothing. This is a long journey for all of us...some times its easy...and others times not so. But this too I will push my way through. I have been through to much already to give up now. Lisa, Sue, Bev & Jayne, I think its like you all said. I feel like my safety net is gone. Its pretty scary. Especially when I CAN'T get a straight answer out of anyone down there and I dont know why? I do have a second opinion coming up June 27th at a WELL KNOWN cancer center. I can't wait to see what they think about my over all treatment..and see if they can tell me anything. Thanks Sue for sharing how you felt the day of your last treatment. I guess this is normal in many cases. This is just alot for anyone to go through...its bound to catch up with us at one time or another. Its just that I had been doing pretty good until the last two days. But I will take a deep breath and put one foot in front of the other and get on with it. I got through everything else...why I feel like I won't tomorrow I guess is ridiculous. Thanks again to all of you for your support. You are all so great! I really appreciate it. 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.