No more Taxol for me

Well, where do I begin?
First, at the time of my first Taxol infusion the nurse and pharmacist told me how I'd feel and to say something even if I thought it was all in my head for the allergic reaction to the cremaphor (sp.) they use in Paclitaxol, most Taxols. Well, here are the signs: tightening in the chest, lower back pain, tightening in the throat, shortness of breath, just to name the first signs. If I were to experience any of these they would stop the Taxol, give me more Benadryl in my IV. Benadryl, Pepcid, Decadron ( I think that's it) are all premeds and need to be on board for 1 hr. before Taxol infusion. Then, they give me an eppy shot, which is on hand. From the beginning, there is a nurse sitting by my side, watching any color changes (redness) in my face and asking me how I'm doing for the first 15-20 min. Slowly infusing 2 min. at a time then 5. During my first infusion, I had some lower back pain, but, I explained that I was having some in the prior week. It lasted a couple of minutes, never got too bad and went away. Then, I "thought" I had a little weird feeling in my chest, tightening? I didn't say anything at first, it went away. So, I got my first Taxol, "no problem". I should have trusted my body. Always trust your body!!!!! I found out the hard way. During the next two weeks (8 days post Taxol) I bought a new lip plumbing gloss. That night, I had severe itching, the next morn. my face and hands were very swollen, the itch has moved, spread to my stomach and back, the next day I had hives on my legs and stomach, itchy still, the next day hives on my chest, itchy of coarse, I took Benadryl. I was awake for three nights in a row, itching in misery. Did I call my Onc., no I blamed it on the lip gloss. It's not unusual for me to react to certain products like self tanning lotion, even reg. types of lotion.
I had my 2nd Taxol appointment Wed. 12/17. I mentioned all of this to my Onc. along with all of the explanations, and the late reaction like itch and hives, etc. I told her I was researching Abraxane, she said it was still new, they would probably start using it more often a few yrs. down the road, but ins. don't like to pay for it unless Taxol fails. It is 4x more expensive than Taxol. I felt like I was having a premonition, looking back. I started crying uncontrollably when she left the room, and wasn't sure why. In the infusion suite, getting my IV, the nurse was making small talk and when she asked me how old I was, I started bawling. I felt like I was getting a really bum deal, and again I think they were all "red flags".
Well, I got my premeds, the nurse said they didn't need to be on board for as long this time because I didn't react the 1st time. So, 45 min. later they started the Taxol drip. This time, no one sat with me no eppy shot was on hand, and I had a reaction within the 1st 2 min. I felt my chest tighten up and said, to one of the nurses' backs and Chad sitting by me, "I feel something weird in my chest" after saying it a second time loudly, my throat tightened up. That's when everyone started moving. I was gasping for air, wheezing, and my head felt like it was going to explode. They stopped the Taxol. "Tried to administer the Benadry into my IV, something went wrong and she had to get another syringe of Benadryl. There were at least 1/2 dozen nurses and Dr. all around at this point. I had my eyes closed concentrating and breathing and waiting for them to help me. Chad said The nurse pushing the Benadryl was barely pushing it, a Dr. paged in was standing there and yelled push that faster, as he watched my heart rate climb to the high 170's. I'm not sure how high it got, or how low my BP got, but I will find out when I go back. I know I was pretty close to cardiac arrest. I'm still waiting for my eppy shot. Time seemed to stop. The pharmacist gets it ready and I hear them talk for a second about where to give it. Give it already!!!!!!!!!!!!! I was gasping so hard, trying to take deep breaths, I sounded like a dying animal. I bet I scared all the other people in the infusion center. Can you imagine the first timers?? So, what seemed like an eternity the eppy shot started to work, I believe I was going into shock, I started puking, Chad said my face was white, and the back pains went from lower to upper to neck to legs. I felt like I was in a vice, literally paralyzed with pain. My Onc. got there after the eppy shot, when I was starting to talk again. My throat was still tight and sore from trying to breathe. I got morphine in my IV. She was so sorry she didn't listen to me better, I told her it wasn't her fault, I explained all of the warning signs away, I'm to blame for not listening to my own body. She even said that now she wouldn't rule out the post itch, hive, swelling to a reaction to Taxol. We'll never know for sure. But, NO MORE TAXOL FOR ME. I get Abraxane Mon. The infusion time for this is about 1/2 hr. no premeds, less side affects, and I've read it is more aggressive in treating breast cancer. yeah!!!!!! I get three weeks in a row, one off, three on, one off, three on. 12 weeks total. Then I will take about 6-8 week off to get my body (cells) back up for surgery. Mastectomy!!!!!!! I can not wait until this ordeal is over. After everything so far, I will opt. for a bilateral mastectomy. Get rid of them both. Oh, if I didn't already mention it I am BRCR-. Good news!!! Well, I will post next week and let you all know how the Abraxane goes. Oh, I am also on 20 mg 2x/day of decadron (prednezone) This morning was my last. So, I've been outside shoveling, scraping, we got around 1/2 inch of ice over night. My neighbor banged on his window and asked if I could help him get out. He couldn't open his front door, the ice was in the way, so I dug him out. I don't think I would've been able to had I had chemo, and not on 20 mg of steroids. But, I did it. I'm glad I get an extra few days until next chemo. Plus, I'm hopeful Abraxane won't be as bad as what I've had so far A/C yuk and 1 Taxol, double yuk, and the fiasco with the 2nd. Nothing could be worse than that.

Well, I'm signing off. Just remember when it comes to your gut, listen to it, no matter what the situation! No one knows you better than you.
Love you all,

Stacy

Five days post Taxol. I had the nerve pain side effects all day Sat. and Sun. It felt like someone was poking me all over with needles and a severe case of restless leg syndrome. I thought I was going nuts. It's better today. It's a dull ache. RLS x 10. Very frustrating. I am going to ask my Onc. if there is any pain meds. for this. I just have the usual Decadron, Zofran, and Ativan. Same as for A/C. I don't even need the first 2. No nausea. I know I'm luckier than most. but this pin prickling feeling is awful. I read about a Neuropath Dr? I'm not sure. Does anyone know about this. I will be dreading next chemo more than ever. 3 more and I'm done. I think I'll have a bilateral mastectomy. I can't imagine doing this again in the future. If my insurance pays for it, I will get tested for the Breast Cancer gene. I already took the blood for it, just waiting on ins. approval, if they don't pay, I won't be able to get the test, it cost $4,000. I don't have a family history that I know of. But, if I do have the gene, they want to do a bilateral mastectomy and remove my ovaries. Whatever it takes. Cancer will not have a chance to get me again.
AND this morning I get a call from my mom, where my 17 yr old son, Brandon, lives. His "girlfriend" has been throwing up and thinks she might be pregnant. I had to calm my mom down. IF she is we will deal with it. I hope she just has the flu, or is lying (which is very possible). She already has a 10 mo. old son whose father is nonexistent. Brandon is going to job corp. in Jan. I told him this is just more reason to go and get a trade. Because if they are going to have not one, but two babies, he will need a good job. I'm glad I don't freak out like my mom, she has made some threats towards the girl and told Brandon he can't see her anymore. I'll calm her down and make her see how she is overreacting. Some things we can not change, we only can deal with them. She likes to think she can change anything to work for her, by intimidation and threats mostly. This is why we didn't talk for over a year. Anyway, pray for Brandon. God has a plan and I'm not sure why he would bring another baby into this girls life with Brandon, who is just starting to grow up, but I guess I shouldn't question HIS will. Besides, we all have free will. They chose to have unprotected sex. God can't control that. She swore to me she was on birth control. Liar. I'll keep you all posted. Thanks again for all the prayers and support.
Love,
Stacy

well, I just noticed that I haven't check in for a while. Busy, tired, life, you know. I finished my A/C chemo and have started my Paclitaxel yesterday. I was told the side affects weren't as bad as A/C. I am achy tonight, but that's from the Neulasta. I'm tired and grouchy. I feel sorry for my family the first few days after each chemo. I don't like myself that much, and now the snow starts. I absolutely hate, (and I don't use that word unless I mean it) driving in the snow. I get panic attacks if there is snow or ice on the road. It doesn't matter how little there is, I hate it. Well, enough negativity. I do think it's very beautiful from my window, if I have no where to go.
Back to the treatment. I had an MRI Mon. 12/1. The tumor board hasn't officially met. They will meed tomorrow, but my Onc. talked to one of the members yesterday before my chemo and the bigger tumor is still showing shrinkage, but the two smaller ones don't "seem" to be any smaller, so I will continue with this chemo and another MRI to check progress. If they don't start to grow we will do surgery after completion of chemo. If they actually start to grow, we will obviously need to do surgery, then finish chemo. Let's pray they respond better to the taxel. Thanks to all of you who are helping me pray for this. I am getting a little frustrated, just a little. I refused to give in to negativity. All of you are such a big help. Thank you. Have a great holiday.

May '08: Me and my 3 boys - Brandon 17, Brady 6 and Braiden 3.

Hanging in there

I had my last A/C Wed. I'm the normal tired, fatigued and depressed two days later. I've got the constipation under control. I take colace 2 days before, the day of and as many days after as I need to, it helps soooooo much. I hate the puffiness the few days after chemo and I always gain like 5 lbs. within 2 days. But, I get another MRI Dec. 1st and if the tumors are still shrinking we will start Paclitaxel. 4 rounds every other Wed. starting Dec. 3. There are less side effects with that. If the tumors have stopped shrinking we will discuss which surgery I will need. Then finish the chemo. I can't think that far ahead, but I have been reading about mastectomies and reconstructive surgery. I am not looking forward to that. I just keep thinking the sooner it gets here the sooner it will be over. I know I'm doing better than most on this chemo. I just had a house full of sick people. First, my niece, then Chad, then Brady. He missed 3 days of school. Chad missed 4 days of work spread out in 2 weeks. He had it, was better, then got it again. Stomach flu. Braiden and I were the only ones that didn't get it. Thank God. I sanitized everything all day long. Washed hands constantly, bleached bathrooms daily, kept hand sanitizer in every room. Wore a mask when I was in close contact with the sick. I think it's gone. Knock in wood. I'm just glad that I wasn't feeling bad (from chemo) it hit in the second week, so I usually feel pretty good during my second week. Usually. Last time I had headaches more in the second week. I am drinking more caffeine now. I tried to quit when I started chemo. The headaches were too much. My onc. said maybe this wasn't a good time to quit caffeine. I limited it, but can't go cold turkey. It's ok. I read somewhere you shouldn't drink caffeine during chemo. Wrong. Be careful what you read. You just shouldn't count it as your daily water, which you also need. I already know that from Weight Watchers. Anyway, I just wanted to check in with all of you. I will update after my MRI. I feel good about it. I will know at my next Onc. appointment Dec. 3.
God Bless you all who visit me. Thank you

Oh yeah, one more thing. I've been getting out a little more, with hats only, I really want to get over worrying about being looked at, so I just decided to get out and look back with a smile. Chad ordered some hats and accessories for me the other night. I feel better about being bald. I'm sure it will get easier with time. I'm just glad it's not in the middle of summer. I'd rather be a little cold and double up in hats if i need to than be hot and sweaty with a hat. I really try to be positive, thanks to my kids, I never used to be, in those oh so depressing, thought I had nothing to live for, teen years. My kids will be more positive about life than I was, because I am showing them how to overcome all obstacles, with a smile.

Two days post Chemo 3. Heart looks the same as before Chemo so we are continuing AC. One more now. Then another kind, I'm not sure of the name. In all reality I will need some sort of surgery, depending on how small the tumors get and if they can get clean margins, but I try not to think about that too much, just focusing on the good news for now. I'm feeling pretty good today. I haven't taken any meds., yet. I do the first two days, but I do better the third day and the headaches and constipation are not fun. Anyway, I hope everyone who checks in with me is well. I'm so glad I started this blog. All of your comments and support are so helpful and inspiring.