Herceptin reaction -10 days hospital?
I just got home from a 10 day stay in the hospital. What an ordeal. I am a stage IIIA, highly agressive cancer. Her2/Neu 3 +++, Er & Pr positive. Had right side mastcetomy.
I had just started my chemo a month ago. Flew through the first one with little problems. (I was surprised since I was SO nervous about the first one.) The first chemo was Herceptin, Carbpotin, Taxotere. Five hours in the chair. UGH. Second week I went back was JUST the Herceptin. Then the third week was just Herceptin again. Then that is where the problem came up. Seemed hard to breath that week...started when I got home that day. Called my oncologist and he had me come in to see him and just kept telling me I was fine. (NOT!) Wednesday night of THAT same week I got worse. Hard to breath and my face was 4 shades of RED and HOT to touch!! Burning hot! I call his emergency line and all he says is to put cold clothes on my face and lay down. And to take that Decadron. (I said "why take that now"?) He just said it would help. So I did as he said and had two decadron that day...and one the next morning and I was WORSE. Face super swollen and still could NOT breath. In fact layed in bed struggling for air. Finally gave up and called him...he said to come in. HA! I said what part of this don't you understand? "I can't breath".
So my husband helped me in to his office via wheel chair. Doctor says I look fine. ARGH!!! They check my oxygen level and its at 82...should be at LEAST 94 at miminmun. They immediately decide to ship me over to the emergency room on oxygen which then turned into my ten day stay there.
I just got home this last Saturday and I am on predisone, two types of antibiotics, and now some new script to take care of the oral thrush I just got. My mouth is so sore and full of white stuff.
Problem is I am frustrated with all this. They say they don't know if this breathing problem is caused from a reaction to the Herceptin, or if it is pnemonia? (I really do not believe its pnemonia) I have had no junk in my lungs, no cough at all....feels DRY and tight in lungs. Which is strange as my doctors kept taking daily chest x-rays of my lungs to see if any improvment? They said the x-rays LOOK like I have SHARDS of glass on them?
Now my oncologist seems to think its a herceptin reaction of some sort? But what I have to question is....he is YOUNG...brand new on the block. I got through the first two chemo's with herceptin with no problems...other then a little sore inside my nose. Kind of crusty. Then the 3rd week I went to do JUST the herceptin alone...my oncologist decides for some UNKNOWN reason to WITH HOLD my benadryl??? I asked him "Why"? He said sometimes less meds are better. I still was concerned because I wanted things to go like the last two session...I wanted NO changes. Even my infusion nurse which is awesome....said he must of made a mistake when he said NOT to take the benadryl. She acted as if you ALWAYS use it at infusion.
To make things worse...that is the time things went bad after that last one with NO benadryl. Then I called him that night about not feeling good and he said to take that Deximethsone. He said it would help. Well the next day I was really bad off. Harder to breath and swollen face. He said to come in to see him. (Oh yeah...I failed to mention he also did NOT tell me my white blood count was down to 116 the day of the last infusion of Herceptin!) He did see me prior to infusion that day. Why didn't he notice it was that low BEFORE letting me do the herceptin infusion? I have read were others have had to delay their chemo due to low wbc. So now I don't know what to think about anything at this point. He did have me had a shot of Neulasta the day AFTER my herceptin infusion. But he should of given me Neulasta the week before as my count was low even then. With my wbc that low and dosed with herceptin....my body had nothing to fight back with. Having my count as low as 116 and having me do a herceptin infusion may of caused all this. My body was in no shape for it...or so it would seem?
But what am I to think now? I am on a complete hold...can't do anything. Can't breath worth a darn. Does anyone know if people have their herceptin WITHOUT benadryl....and has anyone else been told to take Deximethzone after JUST herceptin? I am wondering if that isn't what caused all these problems.
In fact one of his peers came in the hospital to check on me. She wanted the story of what happened? I told her everything and what I found interesting was when I told her he told me to take the Deximethzone AFTER my herceptin infusion. She CUT me right off and said "Oh, you NEVER DO THAT....it could cause a reaction". I told her he cut my benadryl too.
My oncologist DOESN'T know she said that to me. Can anyone here shed any light on this topic. Is anyone here doing the herceptin, carbpotin, taxotere...then followed by two weeks just herceptin....and had any problems?
All this is new to me...I am just trying to figure out what to do. The oncologist orignally told me he wanted NO inturruption with my chemo....he was in a big hurry....which...so was I. But NOW that this came up....I am NOT able to do chemo's. So that means my cancer can spread and grow. This is stressing me out of my mind! I do know I am going to HAVE to change doctors as this guy is scarying me. He isn't paying enough attention to me it seems...and I even bring hubby with me EVERY time.
Is it normal to go ahead and do an infusion when your count is in the DIRT. (116) Any opinions, thoughts or suggestion much welcomed.
Sorry for the LONG post. But I am still SO SICK and weak that I had to try my best to get this all in one post. I really do apologize. For all that make it through this...I appreciate.
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