Low Platelet count = Neumega?

[Chelee]

I just had my last full cycle of chemo today. I had my CBC BEFORE the chemo as always and my platelet count had NOT come up this time like it had all the times before. They don't know why...they said it should have?

But I let them know I don't want a transfusion if I can help it. They said I don't have to worry about that until it gets down to 20...they said thats bad.


I was told to come in tomorrow for another drug called "Neumega" which will boost my platelet count. Then two more follow up shots days apart.


Has ANYONE here had this Neumega? I have never seen the Neumega mentioned here. I hate putting more and more drugs in my body if I don't have too. I have already had EXTREME swelling in my feet and legs, two dopplers on them to check for clots. I think the Procrit causes my edema on top of the chemo. Taxotere and Carb? But now my concern is this Neumega's most COMMON side affects are: Fluid retention, wheezing or trouble breathing, fast or irregular heartbeat, headaches and dizziness.

I have already had trouble with my breathing BEORE this due to landing in the hospital. I am STILL on oxygen. So I do worry about anything else that can cause breathing problems. Then the fluid retention. If my feet, ankles and lower legs get anymore swollen I won't be able to walk on them. They HURT!!!!!!!! And I am on lasix.

So have ANY of you had these shots of Neumega...and if so did it bring your platelet count up? And did you have any of these side affects mentioned?

I dread anymore shots of anything, let alone all the EXTRA trips back and forth. But they said I have no choice since this full cycle chemo I just had today will no doubt make my platelet count drop alot more. So they said I better do it. By the way, my platelet count was at 85. Thats the lowest its ever been. How fast does this Neumega work?

I hope some one here has tried this or knows about it first hand.


Thank you...

Chelee

[Chelee]

I was hoping that someone on this board had heard about this Neumega for your platelet count? Guess not. I am off to go get this shot...I hope and pray it doesn't cause me any problems. Seems like no one here has had it before. I am really the only one? O'well...

Chelee

[tammymarie1971]

Hi Chelee...Sorry that no one knew about neumega...I did look it up and found this site if you're interested. For some reason I can't post links but here is the address drugs.com/cons/Neumega.html
I hope you find this helpful..And I hope all went well today..Take care, Tammy

[Chelee]

Tammy, Thanks so much for your reply. I did check the page you sent me & did a search on google. I am a bit concerned about all the side affects of this Neumega. It says your doctor should make sure to go over all the risks and benefits...yet she *didn't* talk to me at all about it.

My infusion nurse went to ask my oncologist a question about my wbc...and thats when it must of come up that my platelet count was at 85 and told my nurse to give me this Neumega. So my doctor didn't even talk to me about it...and I feel she should of since I see there are many SERIOUS side affects to it.

I am even MORE concerned since I posted this message on this board and we all share something in common unfortunetly. (Cancer, chemo tx.) I find it funny NOT one person on this board other then me has had this Neumega drug to boost their platelet count? That drug was approved in 1997 and no one here has had it but me? (Thats scary.)

I went in today to get the injection and asked my oncologist nurse how often has she given this? She said not very often. (She has been a oncologist nurse for OVER 10 years.) Why is my doctor giving this to me instead of waiting to see if my platelet count goes back up on its own?

I am getting so fed-up with not being able to trust my doctors down here. They DON'T talk to me or tell me anything. My infusion nurse is more like my doctor. She is the ONLY one that really cares about me and how I feel. My oncologist tells her what to do instead of EVER talking to me face to face about my counts being high or low...or anything thats important. I can't win.

But thanks so much Tammy. That was so sweet of you to go to all that trouble to find that page for me. At least I now know this drug must not be used very often...and again...that worries me.

Chelee

[Chelee]

Now I see WHY no one knows about this "Neumega" I was given to boost my platelet count. I asked my oncologist nurse how often she gives this injection...and she says she has hardly ever given it. She said USUALLY they {Meaning your oncologist}will postpone your chemo for one week and wait for your platelet count to go up by itself verse's use this Neumega. (Thats how its done she said.)

I am a bit frustrated to say the least as I don't like taking things I don't need to. Especially NOW that I see NO ONE uses this. Why MY oncologist seemed to think it was ok to use...is beyond me. I think I need to change to a new oncologist YET AGAIN. She isn't spending any time with me or listening to be anyway...so why should I bother.

After my first injection of this Neumega...I had a few nasty side affects....one that affected my breathing. I was told to come back down to get a second injection of Neumega two days after my first one. I told them NO WAY. My face was so swollen, eyes RED....tearing out of both of them. Red from the waist up my neck and head. My face was so swollen. They said to come down so they could check my cbc and see how I looked. So I went down there and my infusion nurse said my oncologist would WANT to see me. (I told her I bet she won't!) I was RIGHT...she NEVER did come out to see me and I looked like all he$%. (I am so glad my doctor cares.) I feel like my infusion nurse IS my doctor...she is the one that tells me everything and tells me what my oncologist wants to do with me.

My infusion nurse DOES care...I think she was really shocked that my doctor didn't come out for one second to look at me in person...especially since she ordered this injection for me. So after having me come down there on the 2nd and 4th day after my full cycle chemo when I felt my WORSE...they just said to go home and be careful and not cut myself since my platelet count is low. (Gee thanks)

All I know is I WISH they would of just canceled this one chemo for one week...that would of been easier then being put through all this crap. That Neumega is nasty...was to me anyway. I was SUPPOSE to have FOUR shots of that stuff which no one told me about. Like I really wanted to run out to the cancer center almost daily after my full cycle chemo for that shot that NO ONE but me gets. Argh!!!

If anyone is offered Neumega...research it first..read about it. That stuff is nasty in my opinion. Its better to delay your chemo a week then to take that in my opinion after my experience. Let alone what I read about it. They aren't even sure if that doesn't cause cancer. (Just great!)


Chelee

[Cathya]

Chelee;

At one point during my chemo treatments my blood counts were on the line and the nurse, pharmacist and doctor discussed whether to give me my treatment or not. The doctor said I was....???.....can't remember the word...well I WAS on chemo...lol. In any case I didn't know what they were talking about but they went ahead anyway and gave me the chemo. When I asked them why they made the decision to carry on regardless of my blood they said that I was cureable (whoopee I thought.....especially as a stage 3c her2+ I can tell you....phew). In this hospital if you are cureable they do everything they can to stick to the chemo schedule and only delay chemo if you are considered paliative. So....perhaps this whole thing is in reality great news for you!!! God bless and keep us informed.

Cathy

[tousled1]

Chelee,

I'm so sorry that you have to go through all this. I'm amazed that no one on this board had not received the shots. I know when I was going through chemo (neoadjunct) my blood counts always went way low but my platlets seemed okay. While I was on chemo I got procrit shots the day of chemo and then evey week to bring up the red blood cells and neulasta shots the day after chemo to bring up the white blood cells. My chemo was delayed once for a week because my counts were so low.

I think if I were you I'd try and find another oncologist. There is nothing worse than your doc not seeing you when you are having a real problem. Hang in there and good luck!!!

[Chelee]

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

[lu ann]

Dear Chelee, Sometimes you have to be your own advocate. I was dx. 2 years ago with a recurrance after 13 years with NED. I thought for sure I'd be dead in 6 months. I ended up going to Cancer Treatment Centers of America for a second opinion. I stayed for 6 weeks and had rad. tx. Most of the patients I met were given no hope prior to going to C.T.C.A. This place is amazing. You can go on their web site or call them. I'm gong to church right now but will post when I get home with the phone number and web site. Blessings fom Lu Ann.