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.

[Sherryg683]

I can only tell you what my Oncologist has told me. I don't do the Benedryl when I get my treatments (taxotere, herceptin), I didn't have any reactions so they prefer not to do the Benedryl. I have taken 11 Herceptin treatments and on quite a few of them, my white blood counts were pretty much as low as they could get. My Oncologist said that Herceptin does not affect your white blood count like regular Chemotherapy does, it will not bring it down further. I have been told that by several of the Drs. there, that's why they don't hesitate to give it. Now, if my blood counts were too low, they would not give me the Taxotere. I don't know if this helps much, I would be concerned if I were you about the Herceptin, it sounds like a reaction..sherryg683

[jsattaw]

Sorry to hear about your ordeal. I didn't start Herceptin until I was finished with my other chemo (4 cycles of Taxol). I am on Herceptin every 3 weeks and do not ever receive any pre-meds. I did however have Benadryl on the loading dose.

I hope you're able to get some answers and feel confidence in your medical team.

Hope you're feeling better soon -- stay strong.

Jill

[madubois63]

I don't take the pre-med's (Decadron, Ativan and benadryl) when taking just Herceptin.

I have had mild reactions after taking the Herceptin where I turn pink and get a little puffy. Sounds like you've had a bad reaction and NEED premed's.

Two weeks ago, I received a TRIPLE DOSE of carbo/Taxotere and herceptin (yup - you heard me right - triple). This did not go as planned. Let me explain, then I will get to my point...My counts have been very low since Christmas and I haven't been able to get chemo. So we planned a week of shots and then the triple so I could have chemo and some time off. I've been going every week for the last 16 months, so time off sounded good. I did the week of shots until Friday - counts were good. I started Decadron on Sunday, went in for chemo on Monday but my counts dropped over the weekend - ugh. So, I did three more days of shots and got the chemo on Thursday. First the Herceptin, then the pre-med's, then the Taxotere...I got through almost all of the Carboplaten before I realized I was crashing. The nurse caught me as I was going down. They pulled the plug on the carbo, shot me up with DECADRON (given to counter the reaction/my point) and put me on oxygen. The Decadron (given in an immediate push through the IV) felt like thousands of pieces of glass running through my blood stream (sound familiar?). After all was said and done, I spent a week in bed and am now getting over oral thrush...

sounds to me like we've both been over medicated...jmo

[AlaskaAngel]

Your previous post was very ominous to me. This one confirms my suspicions, and I feel you are correct in your assessment of the doctor. I do not know what facility is providing your treatment, but have your husband put together your medical records and set up an appointment with an alternative onc or even two, to find someone better who can get you back on track ASAP.

If you want to mention what area you are in, possibly someone here who might be located in or near your area may be able to recommend one or two oncs to talk to that are known to have some history and experience with prescribing Herceptin.

Please let us know how things turn out.

AlaskaAngel

Hi Sherry, Thanks for your reply. From your post I understand its ok to do the Herceptin without benadryl. It would make more sense that it would be needed when I have the Carb, Taxo, Herceptin. I just started wondering and trying to think this through because I was SO THRILLED that I got through my first two infusion with no problems. Even my infusion nurse said I got a A+. She was excited for me. The first week I felt a little tired...didn't want to eat...but it wasn't as bad as I thought it would be. The second week I went in for the Herceptin alone was GREAT compared to the first week. With JUST the Herceptin....I had a REALLY NICE week in comparison. Only felt a tab bit tired the first day of that infusion of herceptin. Then the entire rest of that week...I was up and able to clean house, feed dogs and all my normal stuff. No aches or pains. So now mentally after making it through my first two weeks...I was thinking really positive that I CAN do this. Then I had to have THIS problem crop up.


I don't like the idea that they say they aren't sure what caused this? They did enough tests that they should have a idea. What bothers me is my oncologist said if its a reaction to the herceptin....we will have to use something else. As most of you Her2/neu women know....Herceptin is about the only thing that will work for someone in our position. (Or that is the way I understand it and have been told?) I could be wrong. I was banking on the herceptin as my treatment. I don't know what he could change it too....or if that will happen because I am STILL having trouble breathing. I don't know what damage was done.

Thanks for letting me know about low wbc. So I see its ok to have a herceptin infusion even if its low. That would make more sense as I am sure its the other drugs that are worse on you when your wbc is down. I know that Taxotere is nasty stuff. That is where I must of got confused...I heard they don't do infusions if your wbc is low. But they must of meant when you are having a FULL chemo verses just the herceptin.

I just wish they could figure out with 100 % what caused this? I DON'T want to believe its the herceptin because I did it twice before then and NO problems. But I do know there is an acculmative affect of anything. But I don't want them taking my herceptin away unless they know for sure.

I am frustrated...I am just sitting here on hold. My oncologist said we had no time to wait with me...we had to be aggressive. Now I have already missed two weeks of infusions.

Thanks again for your post Sherry.

Hi madubois63, Your post sounds a bit like my experience. You mentioned getting pink in the face and swollen.

I can't get out of my head what his peer said to me about him having me take Deximethsone AFTER the fact. This doctor has been an oncologist a LONG TIME and flat out said you NEVER give that Deximethsone after the herceptin because it can cause a reaction. It FLEW out of her mouth. So was it really the herceptin...or because he had me at the Deximethsone? I have heard so many different things I haven't a clue. I just want to get back on track and fight this diease. I hate just sitting here doing nothing.

madubois63, why did you have a *triple* dose of Carb, Taxotere, Herceptin? I have never heard of that done. Seems like alot. That is really interesting about them giving you the Decadron and it feeling like *glass* running through your veins. Plus you had the oral thrush too.

I am sure sorry to hear about your experience as I know it wasn't pleasant. I want to ask them what dose they gave me this last time of the herceptin? I wonder if they increased it and never told me? I have no clue how much of anything they give me. Time I check it all out. I have already had 14 down days and I DON'T feel any better so I am really gettting worried. Without the predisone...I am not sure I could breath. I hope this isn't permanet damage?

Everytime I get all positive and ready to fight this...something has to happen. But I won't give up. Thanks so much for your reply madubois63. I found your post really interesting especially since you mentioned the feeling of glass going through your veins.

Is it sounds like you might be allergic to the dexamethasone. From you dialogue you seem to get worse after taking more dexadron.

Any chance you are allergic to aspirin or tartrazine (yellow dye in some food and drugs).

I had herceptin and taxotere and recieved dexamethasone day defore and two days following plus benedryl before infusion. Now that I am just on herceptin I no longer get any pre-meds.

Because I am alergic to iodine when I get scans with contrast they make me take decadron and bendrly before hand. I notice I aso was have a red puffy face the next day....since I am also alergic to tartrazine I amwondering if the reaction is from the iodine in the contrast or the dexadron.

maybe there is an alternative steriod?

kk1

[madubois63]

>>Because I am alergic to iodine when I get scans with contrast they make me take decadron and bendrly before hand. I notice I aso was have a red puffy face the next day....since I am also alergic to tartrazine I am wondering if the reaction is from the iodine in the contrast or the dexadron.<<


I am also allergic to contrast dye too. Every time I get a CAT, I have to pre-medicate with Prednisone, tagament and benadryl (all pill form). I take it 13, 7 and 1 hour prior to the CAT.

Hi AlaskaAngel, I do know for sure I am switching oncologist. I don't feel like this guy has really ever listened to me. I get fed up with every time I go in and look terrible...face swollen, fat above eyelids hanging over eyelashes...and he will say I look normal to him. I tell him I can't breath and he doesn't believe it. I saw him 3 days in a row with complains of not being able to breath...and it takes the 4th day till I and turning blue in the face and have to be rushed to emergency to find out "Gee...she really can't breath."

He makes me feel like since I am a Stage IIIA with highly aggressive cancer...that I am a lost cause so who cares what happens to me. Like my outcome isn't any good...so he doesn't care. And we all know there are lots of stage III people doing well...so I don't appreciate the feelings I get from him. He doesn't believe a word I said. So I am changing doctors...I have no choice. I wish I would of never went to him to begin with. They pushed him on me...and I even asked them at the time why do I have to have the NEW guy that only became a full fledge oncologist since 2004. When dealing with something as serious as cancer...I want someone with experience. Who knows how far this has set me back or if I can even continue now?

As far as where I live...I am in CA area...but I am pretty much stuck in my HMO GROUP. I can't change. I HAVE to go to this one cancer center...thats all I can do unfortunetly. That is what is frustrating too....even if I switch oncologist...which I WILL. I will be getting one of his peers. And we all know they are buddy buddy. But I am still hoping the next one will know we are watching and they better be real careful. (That's if I can ever get my lung function back?) Thats my biggest concern now.

[madubois63]

>>I can't get out of my head what his peer said to me about him having me take Deximethsone AFTER the fact. This doctor has been an oncologist a LONG TIME and flat out said you NEVER give that Deximethsone after the herceptin because it can cause a reaction. It FLEW out of her mouth. So was it really the herceptin...or because he had me at the Deximethsone? I have heard so many different things I haven't a clue.<< I am no doctor and I am not sure what happended to either of us. If we went to the same center, I'd say it was a bad batch of something...I just know I do not like that feeling.

>>madubois63, why did you have a *triple* dose of Carb, Taxotere, Herceptin? I have never heard of that done. Seems like alot.<< My body thought it was a lot too. The reasoning behind the high dose chemo was that I could get the chemo in and get a neulasta shot for my white counts. I was on a three week on/one week off schedule with the chemo. That wasn't leaving enough time in between the shot and chemo - I think there has to be a 10 or 14 day period between the next treatment. Anyway, the "new" plan would also give me time off since I've been going to the center every week. This way, I would only have to go in for the shot the day after chemo and then I'd have nearly three weeks of no doctor appointments. But...this certainly did not go the way it was planned.

>>That is really interesting about them giving you the Decadron and it feeling like *glass* running through your veins. Plus you had the oral thrush too. << that's why I responded. Sounded way too familiar...

>>I have already had 14 down days and I DON'T feel any better so I am really gettting worried. Without the predisone...I am not sure I could breath. I hope this isn't permanet damage?<< Do you have an inhaler?? Ugh - I hate prednisone - tastes horrible going down...

>>Everytime I get all positive and ready to fight this...something has to happen. But I won't give up. << I feel the same way. I am now coughing heavily and have lost my voice. I am also very tired...I feel like such a lump being in bed for so long. It's just not me. I hope we both feel better soon....

Your quote from above

"I hope we both feel better soon...."

So do I, and wish you a speedy recovery (all) ...it makes hard reading but please keep posting..

It is important people hear it as it can be.

I hugely admire your determination and strength.

RB

The report of the shards of glass in the lungs is concerning. Even though you are in an HMO I would DEMAND that you see a pulmonary specialist to review your films. Was this on both sides or just one and was your chest radiated? You need an experienced pulmonologist to look at this so they can clearly find the cause and you can move on.
I agree with everyone else, this onc sounds like he doesn't seem to care that much and is not thorough. Time to move on. Surely there must be another onc in the HMO.

Good luck!

(ps, was on herceptin for 3 1/2 years, never given benadryl. Was on weekly taxotere carbo, 3 weeks on 1 week off for a year. Early on had allergic reaction to carbo but would take claritin and decadron before infusion)

[AlaskaAngel]

I too think you should demand to see a pulmonologist, to get a better idea about what you are going to be dealing with.

AlaskaAngel