Is there a July 2011 group?

I just got my port yesterday....it's not horrible but it is VERY sore!!! And after my AND yesterday it looks like my 1st chemo won't be until mid-august....the doctors are telling me 4-6 weeks to fully recover all my surgeries before they start feeding me my chemo cocktails.....

how do you know when you have thrush? I have a sore, blister on the side of the roof of my mouth, that happens to be right on the tooth where I had a crown put on months ago that never seemed to be comfortable and settle in. I have been doing baking soda mouth washes 3-4 times a day, I don't think I have thrush..also eating yogurt daily. 

Teri, that was the most frustrating thing about supplies for my chemo bag. What do I prepare for? In the end, I only got the things that we would for sure use even if I don't need them. The rest is on a list to be purchased ASAP if the need arises.

Ladies, I'm in the chair as I type this. My taxotere IV bag is about empty and I'll be starting the cytoxan right after. I was given Aloxi (sp) for my anti-nausea to start with. No benedryl because I'm on steroids, but she did tell me that if I ended up having a reaction they would give me some of that. She sat with me for the first 15 minutes to check for reactions, so that was comforting. 

A little difficulty getting the IV started. Apparently I have good veins for blood draws, but not to much for IVs since they don't use the back of the hand either. Oh well. It's working now. 

More later...

Started Chemo on Monday, July 11. A/C every other wk for 2 months, then T every week for 3 months, then Radiation. Well, my Mom & Sista came with me, chair is comfy with a neck pillow. They do offer you pillow and blankies, but took my own. Have TV to use with earphones, have crackers, juice & coffee available. Used my Emla cream on my port, didn't feel a thing! The Chemo was easy peasy, didn't feel weird or anything. About the last half hour, started to get a little tired. Drank lots of water before i went and during, had to go potty about 4 times while there. Ate lunch and had snacks, did my word find.  It only took 3hours!!! which they had told me 4-5hrs, but maybe they ment with my DR. appt. i had before? So, left feeling really good, just tired. Got done at 230pm, went home, laid around. Made myself some mash taters, had some fish crackers. Felt normal until...... 7pm HIT ME LIKE A BRICK!!! sweat just started pouring off me, instantly felt sick, my husband walked in the door just in time!!! So, when they say nausea, i thought i would just be puking, but it's not like that. i had my head in a bucket from 7pm till about 3am. but i only puked like 3 times, you just gag kind of. weird?!?!? couldn't sleep at all. called Dr. 1st thing in morning and they had me go back in for Fluids and more anti-nausea stuff & whatever else they gave me.(forgot about Emla cream but just felt like a pinch!) They thought I was going to be the MODEL PATIENT, they laughed, but they said my body didn't like the Steroids. So, they fixed me up and sent me home. I am taking the compazine faithfully for now 2 tabs, every 4-6hrs. They told me to nibble through out the day, don't let yourself get hungry. That is really working, even if it is just a couple fish crackers or saltines. Had a friend bring me a strawberry milkshake from McD's yesterday and put 1/2 in freezer. Woke up at midnight and had the rest and a banana!!! LOL So this morning i feel pretty good, need to get some water, or juice. So drink and eat all day. I welcome any feedback or questions. Hope this doesn't scare anyone, you can get thru it. julee

Paintingmywaythru: Thank you. And, I wanted to say when I went to school, I majored in painting and design. Most of my focus was on painting and I used it as a therapy to work my way through a lot of issues from childhood and my parents' divorce and such. It drew a lot of attention with the faculty and staff, but it was so deeply personal - that made it a challenge, but I was so glad that I spent those years in that space. If I had the energy now and financial issues worked out, I would be painting my way through in a hearbeat! Paint on!!

Cathy_C: I am working from home too. I find it a challenge around side effects, but I am very happy to be needed and have something to focus on instead of obsessing on myself and every side effect. I get tired of trying to figure out each day what the next SE will be. If I had the opportunity, I think that I would take the disability though. Is there an opportunity to work part-time? Also, check into how long you can take this. Do you have an upcoming surgery that you might need this for? You want to make sure that you don't use up all of your time and then not have it if there is a bigger need.

Day 13: My hair seemed like it was thinning quite a bit yesterday so I did a really short cut. I was getting 10-15 hairs at a time while in the shower. Now I can wear my wig when I go into work and not have them see a difference.

The Biotene mouthwash and toothpaste is what I use several times a day along with a baking soda rinse 3-4x per day to prevent mouth sores. Love the Biotene products! Very soothing.

Steroids: I haven't slept a full night since I started the chemo. I finally asked for a prescription of Ambien. I can now sleep 5-6 hours at a time with that. Although this whole week leading up to my 2nd treatment on Friday, I feel really good. Not much for SE's.

Low white blood count: Make sure that if any of you has a fever, that you are calling your onco. Mine said to call if it was 101. My count was down to 1.4 and I did reach 100 for a full day, and I did not feel warm or chills. I was just checking because they told me to. I ate lots of spinach and other nutrient-loaded foods to try to counteract this, and started feeling more energy within a couple of days. 

Julee, didn't they give you meds for nausea to take home with you just in case? I hear Zofran is good but not sure.

Paintingmywaythru - Hope you feel better:-( Can you talk to the nurse practitioner? I have my Med Onco NP's direct line that i call her every time i feel something strange. Hoping for a better day for you.

Paintingmywaythru - also hoping you feel better soon. They told me to call if my temp went above 100.4 - that they would put me in the hospital at that point. You don't want to risk things getting worse.

Julee - so sorry to hear about the nausea/vomiting. I hope they will address that much sooner/better next time. I think they just don't know who is going to have that reaction. I was put on zofran from the moment chemo started until 3 days after. Don't know how I would have felt without it, but don't want to find out! Have also heard that Emend is a wonder drug, but they didn't give that to me.

I've been dealing with diarrhea for the last couple of days. Waking me up at night. I'm starting to get some energy back, though. Days 4 & 5 I was so exhausted and feeling really low. Good to know for next time and also that it will get better. I've been taking Ambien at night, just to make sure I can sleep. Have slept 9-10 hours a night and it still does not seem to be enough.

Wishing everyone the best in the coming days.

Ann

Originally I was to get the standard A/C + T regimen. Last week when I scheduled they told me the Adriamycin (spelling?) is on backorder and the acceptable substitute is Doxil.  Today I got a call from the very nice nurse at the infusion center and was told they don't have enough Doxil to comprise a full dose.  My onco is out of town so they'll come up with a gameplan (including enough drugs for a full regimen!) and get back to me Monday. We optimistically scheduled infusion for next Thursday.

 This is probably for the best. I was concerned about hitting the nadir on a week when I have 400 children to deal with (albeit 50 at a time).

Hi Shinypop, yes, I was born in 1969. 

Day 9 for me and I'm feeling pretty good.  A little break until Tuesday, then my next infusion.  My mouth feels like I've been eating salt, but all in all I feel pretty good.  Does anyone else feel thirsty all the time?  I feel like I'm drinking gallons of water.

snoopy - so sorry to hear you had a bad day and night, I'm hoping today is better and will think good thoughts.  Did you take your temperature?  something we should all be doing on a daily basis is watching our temps.  Good sign of an infection coming on, so you can arm yourself to fight it.  as far as the tingles, might be signs of Neropathy?  if so, I'm taking L-Glutamine, brand-Jarrow.  get it powder form and mix with an almond milk, i like vanilla, i take 2 TBS a day one in morning and one at night.  This has helped prevent the "tingles" in many chemo patients.  I'm doing actually really good other than the occasional heartburn, and food wanting to go right through me.  But I'm getting that all regulated now.  Also ladies if you have acupuncture at your disposal, do it! its seriously one of the best healing methods ever. 

here's to better days and all of being happy and well in the future  

Well, one and done on the AC. It was not as awful as I anticipated. Thank god for the port. It was a godsend, felt nothing. Feeling a little lightheaded and tired , even after the steroids, but I think that so much anxiety is gone knowing the actual infusion isn't awful. Now to see what the SE might be....... they gave me aloxi, IV emend and dexamethsadone (sp?). I have zofran , ativan and compizine for breakthrough nausea. Having a grilled cheese and tomato and hoping to nap. Hope all are feeling well today. The support is so helpful, thank you ladies....

Rabbit- biopsy never too terrible. I am really getting tired of being stuck though. The port is sore to the touch and I feel it when lean over sometimes. I went to get labs drawn today and they were like port or arm. I almost cried. I know I got the port to minimize sticks but I didn't want them to use it today. It is sore to the touch and bruised. I was so afraid it would really hurt. I have to bite thebullet on Monday though



I have to go back in and get my blood rechecked tomorrow because my ptt (I believe that's what she called it) was 1 point too high. It is in lamens terms talking about coagulation. Not sure what makes it normal but I took a multivitamin tonight and will take another in the morning.



Allenan- looks like we start on the same day. I am scheduled to be at doctors office at 1130am

Bless0Mel: One of my nurses taught me to take in a deep breath right as they put the needle in the port. I was too anxious to do it the first several times. But, now I do it and I feel no pain when the needle goes in. I think she said that it relaxes those tense chest muscles. Try it out!

Hello everyone. My mom is going to start 6 aggressive cycles of TAC. Didn't have much time to read up on it but so far docs have scared us with all the side effects and how rough it will be. Any suggestions ? I am guessing its going to be a very high dose of it.