Sign up Calendar Latest Topics
 
 
 


Reply
  Author   Comment  
StacyL

Avatar / Picture

Goddess Forever
Registered:
Posts: 263
Reply with quote  #1 
Well, where to begin!!!!?????? I'll start by telling you about my 1st Taxol infusion. I got my premeds, Benadryl, Pepcid, Decadron. Waiting over an hour (they were busy, so I got extra time). Was told what to watch/feel for (warnings of reaction). Lower back pain, tightening in chest, throat. A nurse sat and watched for any redness in my face for the first 15-20 min., the eppy shot and extra Benadryl was on hand. Total preparedness. She kept asking me how I felt and to mention anything, even if I thought it was in my head.
Well, I had some lower back pain, but told her I had had some earlier that week, it didn't get worse and it went away after a couple of min., I "thought" I felt a little weirdness (tightening, in hind sight) in my chest, but it went away. So, 1st Taxol went off without a hitch, or so I thought. ALWAYS TRUST YOUR BODY!!!!!!!! Did anyone read how I was having an allergic reaction to this lip plumping gloss I bought on the 8th day post Taxol?? Well, anyway, I got hives, itching, swelling, all spreading and lasting for the next 5 days or so.
I told all of this to my Onc. on Wed. 12/17, 2nd Taxol, EVERYTHING, including, it was all in my head at 1st infusion, and I get reactions to certain beauty products, like self tanning lotion. And this type of delayed reaction was unheard of for Taxol. I mentioned Abraxane to her, she said, still new, ins. won't pay unless Taxol fails, etc., etc,. I should have seen the red flag when she left to room and I started to cry, for no apparent reason. Couldn't stop. Finally, we're in the infusion center, waiting, I kept fighting the tears. When I'm getting my IV, the nurse was making small talk, she asked me how old I was. I said "38" and the tears started again. I explained it must be P.M.S, that's just easy to say. I had no idea what was wrong with me. I now call it a premonition.
This is how my 2nd Taxol went: Premeds, on board for 45 min., no eppy shot on hand, no nurse by my side watching me. They all figured, no reaction the 1st time, I was in the clear. WRONG!!
Within the first 2 min. I looked at DH and said "I feel weird in my chest, no longer that a sec. I'm loudly telling the back of a nurse, "I'm feeling tightening in my chest". The rest happen so fast, yet sooooo very slowly. They (nurses, Dr.'s) are scrambling to turn off the Taxol and get the Benadryl shot in my IV, which wouldn't go in, so they had to get a 2nd one. A Dr. was paged, watching my vitals and loudly telling the nurse pushing the Benadryl (slowly) to push that in faster!!!!! I was in my own world and heard that. I had tightening in the throat, gasping and wheezing for air, put on oxygen. The Pharmacist in the mean time was getting the eppy shot ready. It seemed like an eternity. The lower back pain shop up my back and neck and legs. I was literally paralyzed with pain. I got morphine in my IV. That was not my biggest concern. I couldn't breathe. My heart rate was at least 174. I will find out how high, and how low my BP got when I go back. As the eppy shot started kicking in, I started coughing really bad and puking. My Onc. was there at this point, very sorry she didn't listen to me. I told her it wasn't her fault. I should've listened to my own body, it was my fault. She now doesn't rule out the possibility that I was having a reaction throughout the week with the itching, hives, swelling, etc. We'll never know if it was Taxol or lip gloss. But, NO MORE TAXOL FOR ME. On Mon. I start Abraxane. 3 weeks on, one of, 3 on, one off, 3 on. 9 total in 12 weeks. Then I'll take 6-8 wks. off to get my body (cells) back to normal so I can have my Mastectomy. After all of this, even though there is no cancer in my right breast, I will have a bilateral mastectomy. I am done with breasts. I will do reconstruction. However, at this time, The University of Iowa doesn't have a plastic surgeon. Pray they get one before my surgery. Well, I think that's about all of my excitement. Accept, my Onc. put me on 20 mg. of Decadron for Wed. eve. 2x Thurs. and once this morning. I've been shoveling, scraping ice. Helping my neighbor get out of his house. He couldn't open his door. We got quite a bit of ice overnight. I wouldn't have had the energy without 1. skipping chemo and 2. steroids, ha ha!!!

LESSON FOR THE DAY:
ALWAYS TRUST YOUR BODY, AND INSTINCTS. DON'T BE AFRAID TO SPEAK UP. IT'S NOT ALL IN YOUR MIND!!!!!!
 
Stacy
 
P.S. I just got off a Taxol information sight. It said to tell your Dr. if any itching, hives, swelling of face and hands, etc. all of the above I thought was from my lip gloss, occur. She even thought my ankles felt a little swollen. I told her I swell easy, any extra salt. Look how I explained away everything. I'm so mad at myself now.
Calico

Avatar / Picture

Goddess Forever
Registered:
Posts: 2,525
Reply with quote  #2 
Holy crap Stacy,
that's quite an ordeal you went through. I am so sorry. I can't imagine not to be able to breathe....how awful!!!!
Regarding the Plastic surgeon, maybe other PS's have privileges to operate at the U of Iowa? Maybe it's worth it to check with and call others?

Thinking of you!!!

__________________
~ There are lies, damned lies and statistics ~
Karen1956

Goddess Forever
Registered:
Posts: 1,218
Reply with quote  #3 

Stacy - I was afraid for you just reading your post.  You are so right - we need to trust our bodies, but yet we so often dismiss things.  I am glad that you are okay now.  You take care of yourself.  Karen

coco

Avatar / Picture

Goddess
Registered:
Posts: 164
Reply with quote  #4 
Wow, Stacy. I'm so sorry your Taxol experience was so traumatic. We all learn as we go and our responses to all these powerful chemicals are so individual. You did all the right things by alerting your docs to the S/E's you were experiencing. Remember, you are taking a crash course in BC 101; your Onc is supposed to be the expert! She was quite right to apologize.

So glad you are okay. Your attitude and the lessons learned from your experience are so positive. Way to go, Stacy!

__________________
Barn's burned down, now I can see the moon. - Masahide
snowgirlc53

Avatar / Picture

Supporting Member
Registered:
Posts: 81
Reply with quote  #5 

Stacey, what a horrible experience and I'm soooooo tired of hearing of people that explain how their body is feeling and get told they're imagining it only to have catastrophic reactions.  Damned (sorry) Dr. should STILL be apologizing.  I sometimes got the feeling that the chemo room was kind of like McDonald's... get 'em in, hook 'em up and get 'em out.   The nurses are great but there's just not enough of them and a lot of people of all ages, sizes and types of cancer/chemo's to watch.  Glad you're OK and good luck with the next treatment.  I was one of the lucky ones that had no reactions at all to the Taxotere and am now finished.


__________________
Catherine
http://www.cathysadventure.blogspot.com
nosurrender

Avatar / Picture

Moderator
Registered:
Posts: 7,476
Reply with quote  #6 
OMG STACEY!!
Holy shit!

You turned into the textbook case of an allergic reaction to Taxol. I am SOOOO sorry you went through this. But, I am PSYCHED you are getting Abraxane.
You are going to LOVE it.
I know that sounds weird to say!

You go in, they hang this tiny bag that looks like pina colada mix and start the infusion. It take exactly 30 minutes for the Abraxane to go in. You get plain saline afterward to flush your system and you leave.
No pre-meds, no steroids, no Benadryl, no nothing.
Oh- no allergic reaction either!
Unlike Taxol, which is dissolved in Cremaphore, a DETERGENT - and what you are allergic to, Abraxane is in a fat bubble that happily floats through your system right to any stray cancer cells.

Oh, and I forgot to mention- IT WORKS BETTER THAN TAXOL!!!!

When I was hooked up for my first Taxol they started the decadron, then she started the benadryl. My tongue instantly swelled up, my heart rate went way up, I couldn't talk because my mouth wouldn't work,  they couldn't figure out what it was because they hadn't started the Taxol yet. They finally called in my onc and it was an allergy to BENADRYL! no one is allergic to Benadryl. But it was a gift. Because of my allergy I got the Abraxane and I am so thankful for it.

I got mine weekly.

I really hope you are feeling better. And I am so very sorry you had such a horrible experience.

I LOVE LOVE LOVE your attitude. You go girl!!!!

Love,
g


__________________


WE WILL PREVAIL





CherylG

Avatar / Picture

Goddess Forever
Registered:
Posts: 1,755
Reply with quote  #7 
OMG Stacy ... so glad you are OK. Unfortunately you have learned the lesson we all do on this journey. Speak up for yourself and learn to listen to your body. Although I didn't have it I have heard that Abraxane is much better and easier to tolerate.
Hugs to you
Cheryl

__________________
When you get to the end of your rope, tie a knot and hang on...Franklin D. Roosevelt
StacyL

Avatar / Picture

Goddess Forever
Registered:
Posts: 263
Reply with quote  #8 

I got my first Abraxane Mon., and yes, I loved it. It went so fast, no premeds. I went Christmas shopping after. No Neulasta shot, so as of today (day 3) no body aches. I feel pretty damn good. I don't know if I'll have the neurapathy (sp.) I had it day 3-4 with Taxol. So far so good, a little numbness in the hands, fingers, feet. Not bad. I am so glad to get Abraxane, I've read a lot about it. I can't believe they just don't do it automatically. I guess it costs a ton more. I will get it weekly, 3 weeks in a row, then one off, for nine treatments. 12 weeks total time. I get an MRI after the 3rd one, but it seems certain I will get a mastectomy. My onc. calls my cancer multifocal. Three tumors. Only one has responded to chemo, so far.  Well, thanks to all of you for your words of support. Have a Merry Christmas and a safe, healthy, and happy New Year.

Calico

Avatar / Picture

Goddess Forever
Registered:
Posts: 2,525
Reply with quote  #9 
Stacy,
that is wonderful. May it stay that way!!!!
And praying for good scans after the third!!!
Hope you have wonderful holidays!!!

__________________
~ There are lies, damned lies and statistics ~
nosurrender

Avatar / Picture

Moderator
Registered:
Posts: 7,476
Reply with quote  #10 
Great News Stacy!!
 The Abraxane is a great drug. I am so glad I got it too.
The reason they don't give it is because it has only been "approved" for advanced disease- EVEN THOUGH studies have shown it works great in early disease.
I think that Insurance Companies should stop practicing medicine.
You sound great.
Things are sure looking up for you!!
Hugs,
g



__________________


WE WILL PREVAIL





StacyL

Avatar / Picture

Goddess Forever
Registered:
Posts: 263
Reply with quote  #11 
OMG, Indi-
I am pissed reading what happened to you. I can't believe they forced you to receive Taxol, even after your allergic reaction. There's NO WAY I would have stood for that after what I went through, I can't imagine my Onc. telling me I still had to have it. I would fire her. Did it work for you in the long run? What is your status now? I hope you're doing well.
Indigoblue

Avatar / Picture

Queen Blue Sky & Golden Light
Registered:
Posts: 1,681
Reply with quote  #12 
Stacy,
 
I am NED, for two years, as far as I know...but nobody tells me anything; and the Cancer Specialists always seem so secretive.  If a patient suffers from any other underlying illness, the physicians love to say it's the other guy's responsibily; they write patients off if they are able, especially if they have made a "cheap deal" with the Insurance Company prior to your diagnosis and treatment plan. 
 
The recent follies in my life have proven to me that as a patient, I am expendable.  There are millions who wait for treatment, happily waiting to take my place in the fight to live.  I think I am supposed to be grateful; and I am.  The "dig" for me was that every time I had an attack, and a reaction to a drug; if the Oncologist was consulted about a life and death struggle a patient might be suffering; Benedryl, Taxane, Decadron allergic reactions...and I had them throughout the entire Chemotherapy experience...
The "DIG" is, the Oncology Company CHARGES a CONSULTING FEE to the patient, covered by the Insurance Company...but if you didn't have Insurance, and even though you have had an Allergic Response to something, they didn't bother to actually check, do any tests, or simulate what the cause actually was regarding my symptoms.  And every time my blood pressure skyrocketed, or if I was faint from low red or white blood cell count, or had breathing, back pain, and skin reations...I was being charged without knowing, a fee for asking.  What a RACKET!!!  I don't blame my Oncologist, it's the policy of the Chemotherpy Corporation where I had my treatment...I wonder how much money the Surgeons and other physicians receive when they refer a patient to this lovely establishment and others. 
 
Sorry it took so long to respond.  I was interested in what others had to say, and how many women suffer the side-effects of Paciltaxol, (Taxol), and if the Abraxane causes similar side effects, as well, or not...hmmmm.
 
Thanks again for your astute and skillful word play...made me think about the following difficulties I've had after receiving these drugs; and I can't help but wonder if further problems will occur later on after treatment has affected every cell in my body. 
 
Suspicious areas were found yesterday in my Surgery breast.  I will be seeing an Oncologist (new), who did not treat me with the chemotherapy.  He's remarkable, and my Oncologist (whom I loved, don't get me wrong), studied with the new Oncologist I have chosen to see.  It's turned out to be a good move on my part, because my Insurance sent me an email and a letter, informing all patients that they will no longer serve or pay the hospital where the surgeon, Chemotherapy Oncologist and Radiation Oncologist practice.
 
I hope the Abaxane is working for you.  Keep us informed as to how you are doing. 
 
Love,
Indi
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.