January 2012 chemo

Hi all, Today is day 3 after my first weekly Taxol. Felt great Saturday - went shopping and then to friends for dinner! Yesterday I just lacked energy and felt "weary" and slept a lot of the day but felt physically ok.



This morning after I washed my hands in the bathroom my hands felt like I'd just washed off all the moisture from them. It was a very weird feeling but has been somewhat relieved with moisturiser. I am feeling these on/off pains in various joints and muscles. One minute it will be my left knee aching then it will be my right thigh, then it will be my right knee. I'm also getting the abdominal cramping in waves every now and then (like menstrual cramps sort of).



It's all not too bad (so far) - will see how I go during the day... It's Monday here and I had already said I would work from home today (I'm still working through all this) but I feel like just snuggling in bed and watching cooking or home shows all day ;-)



Jenn

Nancy and Grateful33 - I am so sorry your girls are having such awful pain.  Please talk to MO and see if anything can be done.  Some weeks I had to struggle with the SE but some weeks I have been really good!  Hang in there my friends!

Jenn - my first couple of infusions I had constipation and cramping(almost all day long).  It was really annoying ...I feel your pain. It just stopped after the first few infusions.

Janet - every week we are closer!! hang in there girl  Hugs!

Nancy & Grateful- I had my 2nd Taxol tx last Wednesday and the pattern of pain has been the same both weeks. Wednesday wired and blah combined from the treatment itself, Thursday is good but not much sleep the night before, Friday afternoon the aching begins...... Saturday, I wake up almost crippled, and now Sunday I am still pretty painful but able to get around. Tomorrow will start to be better and then Wednesday do it all over again. 

Basically my neck, shoulders, down my back, hips, pelvis, knees, and ankles are killing me. I have also had horrible bladder spasms as well. Sometimes shooting pain in my jaw and hips that make me yip like my little Brussels Griffon when she gets under foot. I took tylenol the 1st round but onc told me to switch to the 12 hour Aleve and I did much better this weekend.

I am so very sorry you both are going through this. I have to imagine the dd is even worse than the weekly I am doing. Just wanted you to know that you are not alone. Unfortunately these SE's are the norm for Taxol. I was told Taxol would be much better than A/C as well and I would even be able to exercise again. Still waiting for the "better" part. Try a different OC med. Maybe Motrin or Aleve will give you better pain relief. If not, I have heard some women take RX pain meds to get through the bad days. I pray you both will have a little relief tomorrow.

 {{HUGS}}

Brooke

To all:  I finally broke down and called my MO's office later afternoon, got the on-call physician.  We had a nice talk and he explained several things to me.  Yes, these are SEs of Taxol, and he says I just got the "luck of the draw" with the shitty SEs (excuse my language).  He said the clinical trial I'm part of is testing the efficacy of dd treatment; he says there is more chance of neuropathy with the weekly treatment, but more chance of pain with the bi-weekly dd tx. 

He did say the symptoms should abate in a day or so (well, gee, thanks!) and that I should call my clincial trial RN tomorrow morning when the office opens and let her know how I'm doing.  They can help in future tx with more Decadron (oh joy, just what I want) and some Vicodin, if necessary.  I just have to survive this tx first.

Thanks for listening to my painful whining.  *Everyone* has told me the Taxol would be so much easier so I was completed unprepared for all of this.  The doctor did say, "Well, you won't have the nausea and vomiting like you did with the AC" - which I never had.  The only thing I don't seem to have right now is fatigue, and I'm happy about that.

Grateful and Brooke - we can get through this together!  I'm so sorry you're both struggling with SEs too.  I keep telling myself that every treatment is one step closer to being done - but dammit, on days like today I just really don't care, I just want it to be over with now.

Hugs to you all!

So sorry you ladies have to go through these horrible side effects.  It seems my treatment schedule is different from yours, they started in January but are only every three weeks, and am not done the 5fu round yet. 

Nancy: The luck of the draw response is like a kick in the pants isn't it? 

Everyone else going through Taxol:  I hope you get relief soon from the pain. 

Carol

Just reporting in on day 5 of my first weekly TX.  I'm having flu like symptoms and some abdominal crampling.  I think the cramping is from constipation.  I'm bummed that I feel so tired.  My daughter and grandson were here yesterday cleaning my kitchen for Passover and I was just alternating from the bed to the sofa and feeling really useless.  I'm hoping I'll have a few good days coming up as my daughters are coming on Wed. and Sunday and I'ld really like to be able to go sightseeing with them.

Peggy 

FYI...I discoverd that 80%++ of people who have Tinnitus have Hyperacusis...lucky me...I just keep winning on the "Wheel of Luck" I keep out in the back yard. I read that it should go away after a while, we'll see what the doc says today.

How I found out about the Hyperacusis~~~I was leaving a message on a freinds answering machine and when it got to the please leave a message at the "BEEP"..I involuntarily threw the phone from my ear....it was like it was on fire, not even a thought crossed my mind...except...severe pain...throw grenade!!

At least I made a few friends laugh that day

JoyceNYC - I tested positive for the C-Diff toxin.  The week after my final AC tx, I had a weird bout of diarrhea.  It was quite dramatic!  Fortunately, it only lasted a day.  However, within a day or so I had a fever that needed to be checked.  We went to the ER since it was a weekend.  They admitted me and ran a bunch of cultures.  My wbc was low so I was given antibiotics.  My stool culture was positive for C-Diff.  I was kept for two days in isolation.  All symptoms resolved themselves and I was discharged.  Weird!  I understand that it can be very bad! 

Jenn:  If I had begged I probably would have gotten a script for pain meds, but he seemed convinced that Motrin or Aleve would take care of it.  I think I was so shocked that he didn't just offer it that I didn't even think to demand it - I think I felt like I was whining.  I keep expecting that the "doctor knows best" but sometimes I really have to wonder.

I called my clinical trial RN yesterday morning to report the SEs and within 5 minutes she had gone up to the on-call doc and gotten me a script for Vicodin, so my DH got it filled for me and I finally got some relief yesterday.  Woke with some, but not nearly as bad, pain this morning, popped a pill and am getting on with my day.  At least I feel somewhat semi-human again today.

I'm going to check on the B vitamins, too, for the neuropathy - if I'm so "special" with SEs I can just imagine that'll be the next one I get.

Ladies...heading to second Taxol...now taxodere tomorrow. Hoping to see a difference in SEs. I have been working FT through AC and now Taxol. I must be a sight to behold holding onto the walls at the office.

Funny how so many of you had same SE patterns as I did on Taxol. SleeplessIn....you and I had very much same experience. I was told to continue with tiny Dex. Stopped pain pills because in general, I dont like them. Now getting about 6 hours sleep a night and my energy is better but I know I will be crushed again in the next cycle. Three more chemos to go: 4.18.2012

KristinFro - Glad to have you here!  Your diagnosis is really interesting - didn't realize one could have tumors with different markers.  Is your doctor surprised by that?  I would think it would make treatment interesting, especially since your HER2 statuses are different (too bad they can't just cancel each other out).  I also find it interesting that you're doing Taxol first, AC second.  I haven't heard that before - is there a reason for that?  Not trying to be nosey - I have learned so much in this process and it's sometimes really fascinating.

Diane - Good point about the pain meds.  I took Vicodin for several months a few years ago when I shattered my wrist and had lots of surgery, and remember well how bad the constipation can be.  I've had more diahrrea with the Taxol so far than constipation, but am still taking my Dulcolax because I just don't want to deal with the back-ups.

Kristin it could be your tumor status's could change once they are removed.  My biopsy was originally HER- but when the tumor was actually examined it changed to +

Welcome,

Peggy

To all: Thank you so much for your well wishes. I feel that they are working as I'm finally starting to feel semi normal today (painwise). Still have some pain but nothing like before. Sinuses are definitely blocked on Taxol

Kristinfro- glad to hear your tumor is shrinking with the chemo. This is a great group of ladies. (although I wish you did not have to join us)

Nancy- glad to hear you are getting some relief from the pain

Denjak- good luck tomorrow with Taxotere

Hugs to all

NancyHB -- I'm hardly an overacheiver. I've said from the moment this started that I'm just doing what the doctors tell me to do. I personally hate every minute of it, but look for those tiny moments when I can breathe without crying -- the positive among all of the negative.

I have a fear of mets, too. My sister passed away in '05 after learning six weeks before that she had pancreatic cancer. My onc did a CAT scan of my trunk area, and told me there was no cancer anywhere else. Like you, I like to think that chemo is working on what's already there, and hopefully it will stay right where it is before we take it all out with the mastectomy. 

Gratefull33 -- thanks for the warm welcome!

Kitchenella -- I'd heard that the status can change. I'll be having the mastectomy sometime around early July, so we'll see then. 

Kristen... Welcome! I took Metoclopramide (Reglan) for both of my pregnancies and during A/C. Made me a little drowsy but that was it. It was the only drug that would even touch my nausea. Hope it gives you some relief.