June 2011 A/C & T Groupies Unite!

Thanks, JFV!  Glad things are going well for you!

Michelle

Home from 4 days in the hospital, and I thought I was going back again today. I was on IV Vancomycin and Fortaz along with IV pain meds. Boy I never had pain like that before! It was head to toe aches that wouldn't stop. I'm going for labs tomorrow, then they'll decide if I need a break this week. This sucks...

Bobbie Jo, I found it tough to drink fluids on AC, especially around my 3rd infusion.  Michelle's suggestions on liquidy solids helped me out.  I am doing fine with fluids on Taxol.  

My 3rd Taxol today! I'm on a steroid high so I'm taking advantage of it with Girl Scout planning (that I haven't done at all yet).  I'll take it while it lasts.     

Rose, I'm so sorry you are going through this.  Like Michelle said, if they make you take a break, it will be for the best.  I will whine about them taking me off the 2 week schedule, which has never even been a potential for me.  The truth is that I just want the best care if it came down to that.  Was it you that recently switched to a new MO?   

JFV, thanks for the pep talk.  I just want to know how loooong it will take me to have some energy to exercise and eat right (that takes mucho planning and daily prep to change the old habits in the beginning).  Yeah, I know I don't get that answer.   Oh!  The whining again!

I guess we should add watermelon to the chemo shopping list.  I'm thinking it's a wonderfruit...lol!  I am so glad it turned out to be such a good suggestion for many of you! 

And here's a thought for Taxol or Neulasta pain...ask your doctor for a prescription for meloxicam.  It's a cheap ($4 WalMart) non-steroidal anti-inflammatory, works better than Aleve, Tylenol or Advil, and it has kept me almost completely pain-fre.  I was already on it for arthritis, and I swear I've had hardly a twinge of pain with Neulasta (did take the claritin too for this) or Taxol.  It's got to be better than needing to take a true pain med.  Vicodin sends me to la-la land!

Paula - I have been able to do the grocery shopping which has helped keep most of the meals fairly healthy.  Luckily, DH has been good at taking over the cooking when I am not up to it, or takes over if I crash in the middle of it.  I'm usually pretty tired after a grocery shopping excursion and I look at DH and say, "I'm finished!"  But it lets me have control over the ingredients.  I can't imagine how those of you without a "housemate" of any kind manage by yourself.  It's got to be extremely tough and my only suggestion is to shop, look in the produce area for convenience items like pre-cut veggies.  There is an amazing array of choices these days - shredded or pre-chopped carrots, pre-packaged veggies for stir-fry, pre-cut fruit, lots of pre-packaged salad mixes, cole slaw, etc.  Some of it is more expensive than the unprepared options, but at least you're getting some healthy stuff in your diet.  And in the meat department, you can find pre-sliced beef or chicken to add to those pre-packaged stir-fry veggies.  With that, you've got a healthy meal with minimal effort. 

There is a great thread called "So...What's for Dinner" under the "Moving Beyond Cancer" forum.  It's a great bunch with some of us still in treatment and some who are over the hump.  There are loads of great ideas for meals from grilled cheese sandwiches to more exotic delicacies.  Lots of camaraderie and nothing but great support for everyone.  Check it out and join in if you like what you read!

Michelle

Done with #7 of 8!  Today was my third Taxol and it went uneventfully.. needed a few extra pokes as the room was SO COLD my veins weren't cooperating.  I have never understood this.  If you look around and see that all the patients are bundled up in 2-3 blankets, and all your nurses are wearing sweaters, wouldn't those be good indicators to go easier on the air conditioning?  (haha, I almost wrote AC, but on this forum AC means something entirely different!)

Going to an imrpov show tonight - this is good - lively enough to keep me awake and I don't need to exert any personal effort. Tomorrow is work and then I am on vacation for a week, yeah!!

YEEEEE HAWWWWWWWWW the light looks soooooooooo GOOD! Happy your bout done !Bobbie jo

Congrats, BobbieJo! I'm so happy for you!!!! XOXOXOXOXO

Welcome Becky!  Sorry to hear about your week delay - hope the time is good to you. 

I'm a neoadjuvant gal too.  My surgery might be in late October (then rads) and it sounds like yours will be closer to the holidays.  Long road ain't it?

I'm enjoying manageable SEs today before the bone pain and fatigue really kicks in tomorrow... Hope you all are doing well today!! 

This forum needs a "hug" emoticon!

Ralston - I think I feel a little better.  I'm having a few aches and pains, but nothing debilitating.  The heartburn was pretty bad after my first Taxol, but I started taking generic Pepcid every morning and that seems to have fixed the problem.    Keep in mind that I am getting about 3 times the Taxol dose you weekly gals will get.  I am fatigued, but that is something that has increased with each treatment (including the AC) and it seems to get a little better during the "week off,"  I have not had any nausea at all with Taxol, and I even discontinued the scopolamine patch because I didn't think I needed it.  I still get Aloxi, Emend and 6 mg of Decadron before TX, along with the Benadryl and Pepcid infusions.  But overall, Taxol seems easier.  I hope I don't eat those words with the last two TXs!

Welcome, Becky!  Glad you found us!

I wonder if AC is worse for those of you who do Tx12 first.  I went into AC without having been "beaten down" by Taxol.  I think I am glad I did it first.  And when I think of having to go for treatment every single week for 12 weeks, and being there for what, about 4 hours?, vs. 6 hours every 2 weeks for 8 weeks...48 hours vs 24 hours just for the Taxol, I am happy with the way they (Dana Farber) approach TX. 

Michelle

Tldrose - I was able to work at least 3 days a week for the first 9 weeks of my Taxol. The first 2 days were good until the steroids started to wear off, then a couple of bad days and then started on the upswing again. It has only been in the last few weeks that I have really felt generally icky for most of the time. I could push myself to work if I have to, but decided I need to take time to rest and heal. I did have terrible nerve pain around week 4, but was prescribed gabepentin which has kept it under control. Now am dreading the AC, but maybe it won't be too bad. Going to try and stay positive! Good luck to you all! Thanks for the warm welcome!


Becky

I am seeing my breast surgeon on Wednesday so she can see if she thinks there is any progress after three AC treatments. My plans are to tell her I want a second opinion. The University of Michigan hospital is a few hours away - the closest large center.



After researching (can't believe I waited so long) invasive lobular bc, I know that chemo often doesn't work, and a lot of other things that tell me I need a place where they see more of this type of cancer. They will also maybe have a better idea if I might also have inflammatory BC. The center where I am going is growing and for the common invasive ductal cancer would be good, but it's not large enough to have seen many of the less common cancers. I suspect from things my doctor has said that she is not that familiar with it. She is a great doctor and goes all out for her patients but I wish I had asked these questions before.



If the AC isn't working I would be going in for a taxol infusion right away – and not even taxol but an alternative because of the shortage. No time to research. I did find out that neuropathy problems are much higher for women over 65 and I am a few years past that. I already am handicapped by weakness in my legs and would end in a wheelchair for sure with any lasting neuropathy.



So what I am asking is that any of you who pray to the Christian God, will pray that my doctor will work with doctors at the U of M, that I can be seen there quickly, and that they will be given wisdom (which I also need.)



My scripture right now is "trust in the Lord with all Your heart and lean not on your own understanding. In all your ways acknowledge him and he will make straight your paths." Fighting natural anxiety and trying to hold onto the scriptures.



Thank you for listening and praying at least for the next week or so.

3bells - {{{hugs}}}  The usual alternative to Taxol is Abraxane or Taxotere.  My oncologist told me that Abraxane caused more neuropathy than Taxol, and I think the same is true of Taxotere.  I hope with a second opinion you can get a gentle chemo that will work for you. 

Yup, day 4 fatigue.  We just had a family day here at the lake and I am pretty darn pooped!  I tried to not do too much, and I was mostly successful.  But everyone is gone, DH just finished cleaning up the rest of the kitchen and I am not moving off this couch until I go up to put on my jammies!!! My girls are taking me to Foxwoods Casino tomorrow - all I have to do is sit and press a button.  I think I can handle that!

Michelle

Hi there everyone, just wanted to let you all know I'm reading...

tdlrose, I've been working full-time throughout chemo, with time off pretty much only for my treatment days.  (I just did my 3rd of 4 DD taxols following DD AC.)  Like so many things we have found ourselves having to do, it's doable.  There's less "stuff" you need than with AC, in my opinion... less need for the mouthwash or bowel management and whatnot.  Indeed, the fatigue seems to be the most consistent complaint among us - these last two taxols I broke down and took off some additional time from work (this week is my vacation week - I've been putting it off all summer - and in two weeks I'm taking a 3-day weekend), especially because I have surgery and rads yet to go!

3bells, I will be thinking of you and praying for the best outcome!

Michelle and beaglesgirl, sorry to hear you're both having a "bum" weekend. I'm right there with ya....today was a tougher than expected day.  The bone pains started in last night so today I broke down and took one of the painkillers doc gave me... my first time taking it in the daytime... it made me very dizzy and nauseous (along with the heat/humidity today).  I did get through organizing all my insurance paperwork and medical receipts today, which was a huge goal of mine during my staycation......

7 days after my 4th and last AC... Sore scalp, depress, light headache....  I never felt like this before, I am so glad I am done...