April/May 2012 Chemo hang out

Ive been wearing nothing when I go out unless my head is cold. Then Ill put a scarf on. Well, bandana. Scarves are not me. Haha

I think my stomach issues are finally winding down. Wow that sucked. Haha

Hope you are all doing well!

jjames76- Normally, a person should drink about 8-10 glasses of water/fluid a day.  It doesn't mean that you ahve to drink 8 glasses of water everyday but your fluid intake, whether by tea, juice, soup, jello, ice should be in that range.  The infusion nurse told me that I needed to drink more water the day before my infusion to help get my port working.  You need to drink the day of the infusion and at least several days afterwards for sure to help flush out that chemo.  I know water is boring but you can add lemon to it, drink lemonade if you can tolerate the acid, sports drinks.  I got a Pur water purifier pitcher for my kitchen that I drink my water from.  It seems to taste a little better. 

Melrose, I'm glad I forgot too! One more day of normalcy. Get plenty of rest. I hope your downhill slide isn't too bad.

Thanks for sharing that slak!  

I have hope! 

Wow, kjiberty! I take it nothing like that happened the first time? Feel better enjoy your visit - hoping you got feeling bad out of the way up front.

Haven't posted in awhile.  Working in between treatments and the downtime is just taking all of me.  Just had my 4th and last round of A/D.  My labs came back with low hematocrit (8.2) so after my chemo on Wednesday, I received two units of packed red cells.  First time for a transfusion for me even though during my lifetime, I've probably donated about 40 units.  It caused my heart rate to climb up to 115 and made everyone nervous including me.  Also even though they said that the transfusion usually acts as a diurectic but not for me so they gave me Lasix.  I had read that this sometimes happens and was actually glad they gave to me because I felt like a whole new person the next day. 

So the other thing I wanted to pass along is regarding Taxol and nails.  I spoke to someone who works at Hopkins and they are doing a clinical trial there right now by having patients rub Tea Tree Oil into their nails and toenails twice a day.  She didn't give me any results but it can't hurt to try.  She also said to be careful about putting anything else, nail polish, on the nails because if they do split the polish gets into the nailbed.  I am growing out my gel nails, rather than taking them off, because they are so weak underneath.  I'll tell you now I'll never go back to those gel nails once I'm done seeing the damage underneath.  Guess I had done it for so long, I didn't see what was happening.  Anyway, I hope this helps someone.

In two weeks, start the last four treatments of Taxol every other week.  Counting down until July 11th, my last one, providing I don't have to skip one.  The doc says the Taxol is a little easier as it doesn't mess with the digestive system so much but then adds, everyone is different.

Love to you all and blessings along the journey.

Looks like I'm off to the June Chemo Hang Out. I was supposed to start chemotherapy today, but based on the mixed bag that is my pathology report, they want to change my regimen to include adriamycin, making me officially ACT. That means an EKG first so they can get a baseline for my heart's natural rhythms. (WTF?) I couldn't schedule that until the 29th.



They've also asked me to be part of a clinical trial. In a nutshell, there's a study that gives Herceptin to HER2- women (who ordinarily would not get it) to see if they benefit. I'm exploring it - reading the material, doing independent research, and coming up with a list of questions to ask the investigators - but since I supposedly have "garden-variety" breast cancer, I'm disinclined to subject myself to any drugs I don't need without some existing evidence of benefit already.



But for now I'm still here, cheering all of you on and learning from your experiences.

CityFi, I am likely going to be delayed as well, since I have a drain that will NOT stop, so my original treatment start date of next Tuesday is likely  not going to happen.  Also, I was asked to be in that trial and found out that my insurance wouldn't pay for the infusion of the Herceptin.  The drug itself is paid for by the trial, but insurance has to pay for the administration of the drug.  I hope, if you decide to take that route, that you have better luck with insurance than I did.

Thanks, Stacie! That was good to hear.



Fierro6, I'm sorry to hear that because it's nice to have choices even if they can be overwhelming at times.



Melrose, just as you were posting that, I was sending you a PM about this because I found the board here. One of my major questions is whether or not my special Medicaid will cover it. My guess is that, yes, because my care center already has some women in the trial, and surely many of them have public insurance, but I have to be sure because coming out of pocket for uncovered care is not an option for me at this time. Still got to check it out. And you make a good point that there's no loss if I'm in the control group.



I'm walking around with the consent form in my pocketbook because I keep rereading it.

Pkate - thanks for sharing your experience with the transfusion and also about the nails. 

Update on me - I'm done with the endoscopy and am thrilled to say no severe damage was seen by the doc!!! I had "mild irritation" and a small hiatal hernia, but no major erosions or bleeding ulcers. This is a huge relief to me of course, especially since I did have Grade I erosions back in 2005, and my symptoms this time were MUCH worse!!! I guess my esophagus has just become incredibly sensitized to acid, so I am one of the ones who gets severe symptoms without major damage, thankfully. This information makes me feel much safer moving forward with my next TCH.    Third one scheduled for next Tuesday.  My heartburn has been significantly better over the past two days.  I will stay on all of my currrent meds and hope that they help prevent another bad flare after Round 3. 

My platelets continue to drop, but not low enough to need a platelet transfusion.  My hemoglobin is up a bit to 9.7.  Hoping it climbs further so that my chance of needing a transfusion is lowered after round 3.  Just have to wait and see and do whatever is necessary.  

Stacie - I so understand!  I didn't give up coffee until I had to start chemo.  I drank half decaf/half regular coffee for years with my daily Nexium.  Just couldn't give it up, it seemed.  However, once I read about reducing caffeine for chemo I bit the bullet and switched to green tea...gave me some caffeine (much less) and the "morning drink" fix.  And now I have finally (after this terrible bout of heartburn) switched to caffeine-free green tea per the gastro doc...a slow transition helped!!!   I'm so proud of myself.  Like you, I was so addicted.  My husband can't believe I did it.  He continues to drink his coffee daily, but it doesn't bother me as long as I have my caffeine free green tea!  And I'm so happy I get those extra antioxidants to fight off cancer! 

I'm new to the boards but find them very helpful.  I can't believe how many people are going through the same thing. I'm almost halfway through my chemo (4 weeks of AC, 4 weeks of T; dose dense). I thought I was tolerating it all so well but after my third treatment I've got horrible mouth sores to where I can barely swallow or move my tongue.  I get my treatments on Thursdays and by Saturday/Sunday I'm so nauseaus that I can't eat and all I can do is lay on the couch.  I'm dealing with the nausea but would love to know if anyone has additional ideas for dealing with the mouth sores, other than swishing with baking soda/salt/water.  I do have a prescription mouthwash which helps (basically numbs everything) but it doesn't last long and tastes awful.  Best of luck to everyone!

Hi all! Just popping in to provide some helpful links:

JJames -- there's a great page on the main Breastcancer.org site on Eating When You're Dehydrated -- may help with the monotony of drinking water constantly!

Equijen -- Welcome! There's some good information for you too at the main BCO site on Mouth and Throat Sores with tips to help manage them and also on Eating When You Have a Sore Mouth or Throat

Hope this helps!

 --The Mods