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Chelee · 06-18-2006, 01:15 AM

Hi Cathya, I sure like your take on why my oncologist decided to try the Neumega verses delay my chemo one week. I have to admit...it sure is a nice way to look at it. I love the thought.

I haven't felt good about much since I was DX because my surgeon which was great...good reputation....was SO positive about how well I would do following my surgery. But that was BEFORE he did the SNB and found it had spread to the nodes. Then after that...I had went from stage II to Stage IIIA, Her2/neu 3+++, Er & Pr positive, postive node involvment. He had ORIGNALLY said when he thought I was stage II that I would be around a LONG time.

After we had the full picture of my real DX...he NEVER gave me anything positive to go on. I do mean NOTHING! He was so upbeat at first...then turned on dime & wouldn't give me one darn thing positive. (And believe me...I tried to get him to say something...anything.) He wouldn't budge. I didn't expect him to make promises or anything...I even told him that. I said I wont' hold you to anything...I just want to know if you know a few people like me that has done ok? But he just would NOT for the life of him go there! In fact...I was depressed that same day. I told him I always thought if I died of something....it would be from heart diease since my Dad died of a massive heart attack at age 36. Well...you know what my surgeon said? He looked at me and smiled as he slowly was walking towards the door to leave and said, "Well my dear...you already beat him by 12 years". (I almost started crying..but held it in...that wasn't nice to say after I was just given such bad news.) He was laughing and thought it was funny. I sure didn't!!!!!!!!!!!!!!!!!

(He really cheered me up.) So after he wouldn't give me anything positive to go on...then I had my first oncologist. I flat out asked him how well he thought I might do...and how many does he know with a DX simuilar to mine that is still around? He sits and thinks really hard while looking at the floor and says "Well...I have one women that is still here and its been a year". (So I got knocked down again!) I was thinking you ONLY have ONE that you can think of...and a YEAR...thats it...the best you can do.

So after some problems with him...I changed oncologist again...I liked this new one better. I have had about 4 months with her. I have asked her about my chances and odds at beating this? She won't say a word either. She just refers me to that darn chart they run when they put in your stage, her2 status, etc. I was hoping for anything from anyone of them...just say there is always hope...but not one word. Not one freaking word can I get from either of the oncologist I had...nor my surgeon. Three people in the medical profession and not a one of them could give me anything positive to go on. That really made me feel good.

So its sure NICE Cathya to hear you put it the way you did. I pray that is the reason why they went ahead and tried to give me that darned Neumega? But I still question WHY not one other person on this board or another one I visit with her2 gals has had that drug...just me? I feel like they don't care what happens to me at this point...I hate to say it...but that is how I am feeling...even if I am wrong.

No matter what...I am still thinking positive and I have found many more women myself on the boards and else where that I have found hanging in there and doing good. So I will ignore their negative impressions they give me and fight on.

It sure would be NICE if that is why they tried to give me that Neumega Cathya. But my oncologist nurse worries me when she says she has hardly ever given that to anyone. I think they knew how upset I was at my first oncologist for letting m ANC count get so low and landing me in the hospital...which in the end made me MISS a entire month of chemo. She didn't want to hear it from me so she probably used the Neumega regardless of how bad it is.

There is alot of people on this her2 board alone for me to NOT find even one person that has had this drug. But I sure hope your right Cathy...it is a nice way to look at it. Maybe I am way off about my oncologist and their thought process. But they have given me plenty of room not to fully trust them which is sad. This is my life and I would like to think they were trying as hard as me to fight for it. Not just ignoring me.

But no matter what...as of Monday..I AM going to make some calls down there and let them know I need to change again to someone that cares about my treatment. This doctor hasn't examed me or checked me out once in four months. I told her I had swollen lymph node under my coller bone and she says "Keep an eye on it and let me know if it gets worse.". Gee thanks! They just leave me scared and worried all the time. I want someone in MY corner with me...and soon. So I hate to change again...but I sure will.

Hi Tousled1, See, your oncologist sounds normal. You got the Neulasta shot and Procrit when you were suppose too. (I didn't even get that at first...I have had to push and be proactive to get anything.)

Like you my platelets always seemed or I should say...stayed pretty good up until now. This was my last full cycle chemo. But actually my infusion nurse said my platelet count had went from 85 to 77. She said it could go as low as 20...however they don't want that. But that was the ONLY timem my platelet count went that low. If I was still safe...why even give me that new stuff since this was my last chemo other then two herceptin I have to finish?

You hit the nail on the head too Tousled when you said there is nothing worse then a doctor that WON'T come out and see you when your that bad off. That was a GOOD indication that day that I am SO DONE with her. I know my infusion nurse was taken back by my doctor not coming out and looking at me. She wasn't busy that day either...so there was no excuse. It would of taken her one minute if that.

I read so many posts here and it sounds like everyone has such great doctors they can trust...except me. I am just thankful for this board because its half the reason I know anything about my her2 status. Plus its a great support system if you need help/answers.

Thanks Cathy annd Tousled.

Chelee

06-18-2006, 01:15 AM	#8
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	Hi Cathya, I sure like your take on why my oncologist decided to try the Neumega verses delay my chemo one week. I have to admit...it sure is a nice way to look at it. I love the thought. I haven't felt good about much since I was DX because my surgeon which was great...good reputation....was SO positive about how well I would do following my surgery. But that was BEFORE he did the SNB and found it had spread to the nodes. Then after that...I had went from stage II to Stage IIIA, Her2/neu 3+++, Er & Pr positive, postive node involvment. He had ORIGNALLY said when he thought I was stage II that I would be around a LONG time. After we had the full picture of my real DX...he NEVER gave me anything positive to go on. I do mean NOTHING! He was so upbeat at first...then turned on dime & wouldn't give me one darn thing positive. (And believe me...I tried to get him to say something...anything.) He wouldn't budge. I didn't expect him to make promises or anything...I even told him that. I said I wont' hold you to anything...I just want to know if you know a few people like me that has done ok? But he just would NOT for the life of him go there! In fact...I was depressed that same day. I told him I always thought if I died of something....it would be from heart diease since my Dad died of a massive heart attack at age 36. Well...you know what my surgeon said? He looked at me and smiled as he slowly was walking towards the door to leave and said, "Well my dear...you already beat him by 12 years". (I almost started crying..but held it in...that wasn't nice to say after I was just given such bad news.) He was laughing and thought it was funny. I sure didn't!!!!!!!!!!!!!!!!! (He really cheered me up.) So after he wouldn't give me anything positive to go on...then I had my first oncologist. I flat out asked him how well he thought I might do...and how many does he know with a DX simuilar to mine that is still around? He sits and thinks really hard while looking at the floor and says "Well...I have one women that is still here and its been a year". (So I got knocked down again!) I was thinking you ONLY have ONE that you can think of...and a YEAR...thats it...the best you can do. So after some problems with him...I changed oncologist again...I liked this new one better. I have had about 4 months with her. I have asked her about my chances and odds at beating this? She won't say a word either. She just refers me to that darn chart they run when they put in your stage, her2 status, etc. I was hoping for anything from anyone of them...just say there is always hope...but not one word. Not one freaking word can I get from either of the oncologist I had...nor my surgeon. Three people in the medical profession and not a one of them could give me anything positive to go on. That really made me feel good. So its sure NICE Cathya to hear you put it the way you did. I pray that is the reason why they went ahead and tried to give me that darned Neumega? But I still question WHY not one other person on this board or another one I visit with her2 gals has had that drug...just me? I feel like they don't care what happens to me at this point...I hate to say it...but that is how I am feeling...even if I am wrong. No matter what...I am still thinking positive and I have found many more women myself on the boards and else where that I have found hanging in there and doing good. So I will ignore their negative impressions they give me and fight on. It sure would be NICE if that is why they tried to give me that Neumega Cathya. But my oncologist nurse worries me when she says she has hardly ever given that to anyone. I think they knew how upset I was at my first oncologist for letting m ANC count get so low and landing me in the hospital...which in the end made me MISS a entire month of chemo. She didn't want to hear it from me so she probably used the Neumega regardless of how bad it is. There is alot of people on this her2 board alone for me to NOT find even one person that has had this drug. But I sure hope your right Cathy...it is a nice way to look at it. Maybe I am way off about my oncologist and their thought process. But they have given me plenty of room not to fully trust them which is sad. This is my life and I would like to think they were trying as hard as me to fight for it. Not just ignoring me. But no matter what...as of Monday..I AM going to make some calls down there and let them know I need to change again to someone that cares about my treatment. This doctor hasn't examed me or checked me out once in four months. I told her I had swollen lymph node under my coller bone and she says "Keep an eye on it and let me know if it gets worse.". Gee thanks! They just leave me scared and worried all the time. I want someone in MY corner with me...and soon. So I hate to change again...but I sure will. Hi Tousled1, See, your oncologist sounds normal. You got the Neulasta shot and Procrit when you were suppose too. (I didn't even get that at first...I have had to push and be proactive to get anything.) Like you my platelets always seemed or I should say...stayed pretty good up until now. This was my last full cycle chemo. But actually my infusion nurse said my platelet count had went from 85 to 77. She said it could go as low as 20...however they don't want that. But that was the ONLY timem my platelet count went that low. If I was still safe...why even give me that new stuff since this was my last chemo other then two herceptin I have to finish? You hit the nail on the head too Tousled when you said there is nothing worse then a doctor that WON'T come out and see you when your that bad off. That was a GOOD indication that day that I am SO DONE with her. I know my infusion nurse was taken back by my doctor not coming out and looking at me. She wasn't busy that day either...so there was no excuse. It would of taken her one minute if that. I read so many posts here and it sounds like everyone has such great doctors they can trust...except me. I am just thankful for this board because its half the reason I know anything about my her2 status. Plus its a great support system if you need help/answers. Thanks Cathy annd Tousled. 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.