Cytoxan Taxotere Chemo Ladies- February/March 2013

Jtrosesav -- I got some really cute hats at Just in time -- www.softcovers.com

I am right there with you -- wearing a hat to work for the first time today, since my attempt to blow dry my remaining hair into some semblance of style resulted in the equivalent of a small furry creature in my brush..... Sigh....

update, team Kim, just went to that website and it's truck covers!

HI-

I am new, seem to have same size tumor, same er , pr, etc. I had bilat. mastectomy and am 4 weeks post op from that, just saw oncologist in Dallas, but live closer to Flower Mound, wondering who you saw and where you had treatments?

I did NOT like the HUGE infusion room I saw yesterday full of VERY OLD ill people, all in a row not speaking looking sad...it was awful

thank you, ckmoss

ckmoss- vent away!!!! I completely get it! My MO says thT he does not do routine blood draws because even if it is low, it will just come back up anyway. While I get that, I am also not getting Neupogen or Neulasta, and would really like to know just how careful I need to be! I have a huge list of questions for MO next week. I want DH to go with me to have a voice besides mine. I want to know the risk/ benefit of 4 vs 6 treatments. I am scheduled for 6. I may ask him to have the oncotype run. If it is low, them4, if it is moderate or high, then 6. If not that, I would like a Ki67 score. I don't have any of this info. I also want to get copies of all of my labs. They routinely give copies of the ones with blood counts, and those go to a website where I can sign in, but the other blood work with info on the liver and such is not handed out and does not go to the web site. His PA balked last week when I asked for copies, so this week I will be more persistant because it is my right to see these. OK...now I'm venting, aren't I????

As far as hats and wigs, I got my wig from www.voguewigs.com. I would look ther at any you order from other places too, because they have pictures of "real" people in them in the comments section which helps a lot. I also got skullcaps or "do rags" from www.bandanaworld.com. I love these and wear them anytime my wig is not on. They are very comfortable for me.

I did slog my way through a 3 mile run today...if I call it a run...very slow, but at least I got out and about. Race for the Cure is in 2 days.

so now my cold turned into fever and I had to call the onc on call..he called in Levofloxacin which I just took and told me to come back tomorrow morning to redo blood counts (was in Monday). I can't help thinking....does this mean I can stop chemo. Very disappointed I. How much this sucks despite so much complementary treatment t and supplements. I also have to go to the bathroom urgently every 20 minutes or so and had to change my underwear several times today. Wondering what is going on! This is so much harder than surgery and I feel so alone.

Jacquie, I hope the antibiotic kicks in and you kick that fever. Eat some yogurt if you can to hopefully help ward off a secondary yeast infection. I hear you on the feeling alone. I was having a pretty rough day today too...not feeling rotten, just tired and alone. So you are not alone in feeling alone....if that makes sense. I sure hope you are feeling better soon.

Melrose, He draws blood the morning of my infusion and he gets the white count, hemoglobin, platelets, and such. I meet with him about 45 minutes later, and I get those numbers; they print them. I asked about the rest of the blood work and they said that the other labs don't come back until the next day. I asked then to have them from my previous visit and the PA I saw last time danced around it. I see the MO before my chemo next Friday and I will tell him I want a print out of all labs, and the ones not ready that day, should be mailed to me the next day. I have been getting a lot of abdominal pain days 3-7, so I think it is fair of me to want to see those numbers. I have the pathology report from my BS and from my original biopsy, and the Ki67 is not on either of them. I asked BS about it way back when and he said they did not run it. DH has not gone to any of my MO visits, but he is going next time. Questions are all written down! They are in my phone, so I write them as I think of them.

Itnis almost Friday, so another week is almost done.

Kbeee I think you should get the oncotype done. At least it would be a little more information. I wanted to do that too, but I kinda already knew from my path report that mine was a pretty aggressive type of cancer. Sucks. I am also going to do the genetic testing if my insurance will pay for it (anyone else have it done?), because if I am positive for either one of the breast cancer genetic defects I will have a mastectomy done on the other side too.

Jacquie, I had to take antibiotics on this first round too (weird rash my doc couldn't explain). They actually helped a lot, and I felt a little safer on them, if that makes sense? I didn't worry so much every time one of my kids sneezed in my vicinity. I'm tired today though. Seems like I only feel normal if I sleep 9 or 10 hours a night. Exercise does seem to help, so I am trying to do something every day.

TeamKim, my hair is definitely going too, and fast. I ordered a wig but it won't be here until Monday. Not sure I'll make it 'til then, but I have some hats just in case.

ckmoss, the decision on the rads is a tough one. It is so frustrating that there are no cut and dry answers. I think getting more than one opinion would be helpful. I hope your appointment today goes well.

My DH is also on the unresponsive side. He is more of an action person that a words person; he always has been. He is good about calling a friend for me if I need to talk. His whole family is that way. It is challenging though, especially in times like this where I just sometimes need to vent!

I am doing the Race for the Cure tomorrow. My legs feel like they are made of cement, so my hemoglobin must be low, but I am going to try and jog those cement legs the whole 3.1 miles. After this, if I am as tired as I am now, the rest of the way through, I'll just have to stick to long walks, and hold off on more running until spring....which can't get here soon enough for me!

Nocomp-I got seroma in MX site and surgeons words..we will have to go and take more tissue out and also do complete emblazon of MX site. There was no where to put that so I just listed as 2nd MX..as surgeon said that it was getting more in same site.

Kbee-Are you doing radiation? Did you have positive nodes?

Just got back from rad onc. She disputed almost everything I had documented. She said that 3-4 cm lump put me in a grey area..and that it is a 20% chance that radiation would help recurrence. No where did I see that high of an amount. She said have any lymph positive automatically puts you where you should do it. I do agree that I am in a grey area..only thing I agreed with. She said there is no risk at all for heart issues if you are radiating on the right side. I am going to go back and read to see if it specifies that. I do know that it is higher risk if on left side, but the way I read..high either way. Is strong risk for lymphedema, but says that she has only had 2 patients in 2 years. I have horrible fear of that. I am going to go for 2nd opinion..in Charleston, SC. The medical university is down there and I have higher faith in those doctors. She also wanted me to have 30! People in my support group that should def being getting rads don't get that much. This has made me in very cranky mood. Not sure if you can tell this is being written in very pouty sulky way. LOL.

Melrose-Thanks so much for link! I will def check it out. I am in the process of getting in to the Cancer Center of America in Atlanta, GA for 2nd opinion. She said that every step of the way, there is never just one specialist at a time..that you have a whole team meeting about your from surgery to finish line and that 5 different specialist would review my entire treatment plan and give 2nd opinion. I wished I could have gone there first..but only way I can now is I have hit my ceiling in insurance. I was reading their website about radiation and if I have to have would love to do there. It seems they are very up to date in their approach..but that, too..because of time..work..3 1/2 hour drive..no way could I drive that every day. So, I will be content with their recommendation.

ck - hope the Cancer Centre can give you the answers you are looking for - the rads people do sound somewhat over zealous. I agree and have read myself all the stats u seem to be working with so I think you are very def right to question what is best for you

its weird isn't it when we are given the 'softer' options ie no rads or 4TC we question it and think we need more yet when we get told 6xT, or rads we think. But do I really need that much

Thnx for explaining the dbl Right Mx - makes sense now

I like the firecracker fb group idea.

Here's a great website for ordering cheap bandanas/scarves/beanies: www.bandanaworld.com

Jacquie - my husband was amazing and very supportive in the beginning, especially during my surgery. But when the first chemo was approaching, he panicked. Not sure exactly why, but he was scared. Two days before chemo was to start, he packed a bag and went to a hotel. He said he needed a couple of days to think and be alone. This really freaked me out, and I called my 24 year old daughter and another close friend who came over and stayed with me that night. The next day, my husband came home completely renewed. He had called a friend from the hotel who had cancer and also had been a caregiver for his wife when she had cancer. They talked for hours about how important it is for me and my recovery for him to be my supporter right now. My husband has been amazing again ever since. He is there for me every step of the way. He just needed a little time alone, plus talking to his friend who had been through it both as a cancer patient and a caregiver for his wife during her cancer treatment. My husband isn't one for support groups, so being able to talk to a friend was better for him. I hope things are going well for you now.

Yesterday I had chemo #2, and it went well. My port is working fine now, and that was a total relief. I'll start the neutrogen shots tomorrow, which was hard last time with SE's, but kept my wbcs up. At Kaiser in Oakland, we get our blood tests done two days before chemo, and that same evening the results are emailed to me so that I'm kept informed. All labs were good this time, but the Onco nurses said that could change as the chemo's go on.

Last week I started a yoga class for cancer patients. It was the most amazing feeling afterwards. I was having a low day when I walked in, and when walked out I had the biggest smile and feeling of peace. The class is provided at the Women's Cancer Resource Center in Oakland and is totally free. I highly recommend yoga for destressing!

Hi everyone,

This is my first post in this forum, but I have read about 10 pages pack in the last couple of days. Today I picked up my premeds, zofram and a steroid. It makes chemo more real to me. I get my picc line put in tomorrow and also am going to the "look good , feel better" program tomorrow. Chemo starts on Thursday.

I also am meeting with my GP for an anti anxiety just in case I have difficulty on Thursday.

Any one else starting this week?

Schoolcounselor, I am not starting this week, but I am getting my third on Friday. I am doing 6, however and not 4, so if you are doing 4, we will finish the same week . I found my first treatment to be very doable. The most annoying thing to me was that everything tasted awful for the first 2 weeks, and I have had a persistent sore throat. I have also had some pain on and off, but I have found it to be doable. The actual day of the infusion, I felt just fine both times. I have iced as suggested by others. Post any and all questions you have, and let us know how it goes.