January 2013 chemo group

Carlads, I had a pretty bad reaction to the Taxotere drip after about nine minutes.  They were dripping it in slowly.  I was talking with the nurse and my husband to distract myself and keep my anxiety in check.  I had taken my 4mg of Dexamethasone the morning and night before and the morning of.  I had taken my 4mg of Zofran the morning of.  Before they started the IV, they gave me 8mg of Dexamethasone and 8mg of Zofran.  Then the nurse started the IV.  I was chatting trying to keep anxiety at bay.  At about nine minutes, I noticed an INTENSE pressure in my chest.  I became breathless almost instantly and I felt like all the blood had rushed up into my head.  I leaned forward in the chair and put my forearms on my thighs and tried to do pursed lipped breathing to calm myself down.  It DID NOT work.  The symptoms worsened.  I heard my husband say, she's turning red.  The nurse had stopped the IV drip, but the symptoms continued.  I remained breathless, red and feeling a lot of pressure, then I started to see a lot of sparkles in my field of vision like I was about to pass out.  I continued to try to breathe my way out of it, but it didn't work.  The nurse was calling for someone to bring saline injections because, though she had the Benadryl and the hydrocortisone on the cart, she didn't have any way of injecting them into my IV.  Suddenly the MO appears before me and I started to get SEVERE pain in my low back alternating across the flat hip bones above the butt cheeks.  Like I was being stabbed with an ice pick repeatedly. I've been through a lot and used to be a very disciplined college athlete.  If someone said, I bet you can't do blah, blah, blah.  I'd be thinking, I bet you I darn well can and I would work at it and work at until I did what they bet I couldn't.  This pain was like having bone marrow sucked out of you.  I've had that procedure three times when I had the Hodgkin's.  They can't numb the bone, just the skin.  When they get the bone shard out of the way and stick the needle into the opening to suck the liquid marrow it's the worst pain I think a person could ever feel.  It hurt so bad, it sucked my breath out with the marrow.  That's what this pain felt like.  I had to keep squirming in the chair, rocking from butt cheeck to butt cheeck and sliding up and down the chair.  I really wanted to get up, but I was afraid I'd fall.  The symptoms resolved in the order they appeared, but they resolved more slowly than they appeared.  It was not anaphylactic shock because my pressure shot up to 150 over 94 and I'm usually 108 over 64.  I'm sure the sensation was made worsened in me because I only have 33% of predicted normal lung capacity from radiation and chemo for Hodgkin's in the mid to late 80s.  And I also understand it's fairly rare.  The solution worked and I didn't die.  Obviously.  I'm very nervous about getting this Taxotere without being premedicated with the Benadryl and hydrocortisone.  I wasn't able to convince the nurse or the MO to say they would do that.  Not sure why.  But I can tell you this.  It will seem like living through hell these next almost three weeks waiting for those first several minutes of that drip. I don't think I should have to go through that mentally.  This is bad enough physically.

Mandy, I am so incrediby sorry to  hear about your story with the port.  All we can do is stay vigilant in our own care, pay attention and be your own advocate at all times possible.  Obviously, you had no control over that issue.  Hopefully, the rest of this journey will be as smooth as possible for you and that will be your only truly frightful and painful one.  I've had chemo before.  I've been down this road.  You'd think I'd be all good with it.  But, I'm not.  Somehow, though, we all do make it through and then think to ourselves how we wouldn't with this on our worst enemy.  I've never been able to figure out who that who be, but if I had one, I wouldn't wish this on that person.  

Forest- What day do you start?  I am scheduled to start on Monday the 28th as long as I am healed from mastectamy I had on the 29th of December.  Colleen

Hi Ladies, I had my first chemo Tuesday the 8th.  The first couple of days were not so bad.   Last night my body ached all over (sure it was from the shot) and had a fever.  Just feeling pretty shitty all day.  Can't seem to get out of this funk of being tired.  I'm sure it's all normal but just thought I would check.  i'm already getting mouth sores, I just keep doing the salt and baking soda rinse.  Any ideas how to get some energy without doing to much.  i have done a little house work but not sure what else to do keep from going crazy.  The one good think is I have not had any nausea since treatment.  Hope everyone is enjoying there weekend as much as you can. Anne

Hi Liz!!! Welcome!



Hope everyone had a great Saturday! I've been lounging around watching movies and what not. I'm three days post 1st TC. So far so good. Tired and chemo brain but no other side effects that I've noticed. I'm kind of digging this b/c the first time around 18yrs ago, the SE were so severe. What I'm not digging is the salt/baking soda rinse. Oh big huge YUCK!!!! Lol!

Wow, Oliverhog, that sounds terrifying.  I'm so glad you made it through alright.  I had my first chemo on Friday, and everything went really pretty smoothly, if slowly.  (They said they put in some of the meds on extra-slow the first time, just in case something goes awry (as it did with you.)  They let me bring home the Neulasta (because, for religious reasons, I couldn't go back to the hospital to get it on Saturdays), and I just learned how to inject it myself.  Really not so scary after all.  Does this make it - one down, five to go?  (I should probably wait until next week to really say that, eh?)  But I'm grateful for each smooth day.

ablydec, is that an over the counter or prescription? The other two are repulsive. Lol!! I'm happy to try anything. !



For anyone taking CT, when did you notice you really felt back to normal? No chemo brain, etc etc etc.

Thank you Paula. Everyone keeps talking about chemo brain. I haven't had chemo yet, but I feel like I have been in a fog since my surgery Did anyone else feel like that? NoI sometimes feel as though I am only half here. Is this a stress thing with the anxiety if what's to come do you think?

My hair is down to middle of my back but tomorrow an old friend is coming to cut it short. I havent had short hair since I was 20. I think it will make it easier for when I start losing it next month. Nicole503- it wouldn't be so bad if the hair down there didn't grow back. Lol

Colleen- I have been in a fog too since my diagnosis/surgery and I attribute it to all the info and stress and anxiety that has drilled my brain. I'm getting my long locks chopped Tuesday into a pixie cut and my hair hasn't been short since birth :-/ ! But I think it'll be easier when it goes too.

I feel like I'm in an odd holding pattern until weds when I see what happy hour has in store for me. It makes it hard to focus on anything else.

Nikki

I'm guessing I will be in this group too.
Monday I'll go over the ct scan and hear oncologists NEW cocktail.

SKIMOMMI, I had one cycle of Taxotere (severe reaction, taken off) replaced with Carbo, Cytoxan and Herceptin.

Onc has mentioned: adriamycin, Xeloda, Navelbine and seriously can't remember anything else he mentioned, because he was hanging his head so low with the 10/10 nodes. oh, and herceptin again.

Just dropping by to let any newbies know that they can keep their hair with cold caps.

Paula,

   Yes, I am Jewish.  If anyone is interested, there is also a subgroup somewhere on here that focuses on the Jewish angle.  (As well as an organization, Sharsheret, based in Teaneck).

Barbara - thanks so much for sharing the information re: hair (and more!)

Nanc620 - I'm looking forward to hearing about your trip to the naturopath and also your hair situation - especially considering what your nurses said!  I can't remember if I've ever read what your chemo cocktail is...

Re: following a plot - I haven't had any interest in reading fiction for years and rarely watch movies or television programs.  Kind of sad because I went to college on a creative writing scholarship!  However, this past weekend I watched four movies in 24 hours which was a record for me.  I haven't watched that many movies in a full year (over the past ten years or so).  

Sandra60, re: Her2/neu positive - my original biopsy reports showed my levels as being +++ but my oncologist had everything retested for a FISH score and my level was over 70?  Whatever it was - it was high.  Or maybe it was over 7.2?  I need to ask him for a copy of that particular test.  

You may find this of interest - I read an article about Her2 and non-Her2 tumors.  I'm going to see if I can find the link and post it.  I think I bookmarked it because it was so interesting and I thought it may be of use to others in the future.  I think the story came out of the San Antonio Breast Conference.  

Anyway, from what I understand - they consider the FISH test to be more reliable than the immunohistoligical (?) test. 

One other thing - re: chemo brain - I think there was a study out of the San Antonio Breast Conference that indicated "chemo brain" can actually start pre-chemo...  no surprise I guess.  

Laura5, even with the AC chemo?