Is There A September 2011 Chemo Group?

PinkShirt - You haven't said anything about the ISPY trial except the multiple MRIs and biopsies.  Have they trialed you, or are they going to trial you, on any novel therapies?  I think you are the only one participating in a clinical trial among us.  It does sound like a promising trial for finding more targeted therapies.  Who wouldn't be in favor of that?  I have to agree with what Rocky said.  Some day they are going to look at the treatments we go through as being as primitive as bloodletting.  Some day.  They've come a long way and still have a long way to go.

Just for laughs, I think I came up with a new word today to describe friends who let their kitchens go during chemo treatment, you know the ones that wash 1/2 their kitchen floor.  Chemoslabes. Oh is the mail and junk mail piled high on my kitchen table.

When your skin is so dry you could start a fire by rubbing your fingers together, that would be tinder fingers.

I guess I would rename ladytown the old squeaky leaky these days.

Swelling and skin problems from Taxotere or Taxol would be taxodermy.

Other funnies - During a chemobrain moment a week ago I was petting a strange rottweiler absentmindedly for a few minutes as just another big dog before I remembered that I'm afraid of rotts and pitbulls.

Old friends and honesty over carrot cake:  She says "What's that thing on your head?  (my t-shirt turban).  She shows me a picture of a leather loveseat, pull out bed, with memory foam mattress for 4000 dollars that she wants.  I say "This is the same linoleum in your kitchen since I was 7.  You want to use 4000 on the occasional guest?" When I see this old friend, I go all the way back and get to see the journey until now.  All those mental and emotional snapshots. I know you old married couples have this and I don't have that, but I do have a couple old friends.  It's comforting that we do not only see each other for what we are now, but knew what we were before, when I jumped overboard because your cousin threw a spider on me, when your retarded brother hung my undies on the antenna on the baby blue station wagon as we came back from up north. When I see her, a million memories come back,  Toboggans,  Row boats.  Learning to dance from my sister and her friend.  Rollerskating in my basement.  Barbie dolls. King of the hill snow mountains. Picnic lake days.  Vacations. Crazy nuns at church school.

Only much later at night do I remember how much over the years she has discouraged people living in her guest room and taking root, everyone from her retarded brother to her in-laws invading her space, invading her adult domain.  Could that bed have been about me....maybe.... or maybe I am just stretching.  I feel like Monty Python....I am not dead yet.  Don't be throwing  me on the cart yet.  Shit. Maybe that's just paranoia, and her mother-in-law is failing a bit.  My childhood friend is my POA.  Now, late at night, I just wonder who that dream bed is for. Damn.

Kimberly - I love you your chemvocabulary!! I also love hearing about such wonderful memories with your friend. We moved so much growing up, I don't have those wonderful roots. I have been lucky to have lived and graduated high school overseas and many of those friends are like family. We try to get together every year. This year's gathering was in San Francisco, 2 weeks after my BC diagnosis. It's is amazing the way old friends can melt your worries away, even for a little while.

I looked in the mirror today and decided it's time to be greatful for something. I may be pudgy, boobless and bald, but I still have eyelashes and eyebrows!  

Well, tme to get ready for LE therapy and my ECHO. I need good ECHO results to stay on Herceptin. 

 Happy Tuesday my Chemosabes . Have a a great day with little or no SE's.

Kimberly- Thanks for always make us laugh.

Belle- Good luck today. Glad it's the last A/C. Hope side effects are minimal.

Hope everyone is having a better week. I have an appointment with the surgeon today since surgery is now being sandwiched in the middle of chemo. Stressed about having to make the surgical decision but looking forward to getting my new timeline.

Good luck to everyone going for treatments this week.

UGH! I met with my surgeon and was hoping to get some direction today as to lumpectomy + radiation or a mastectomy. I am very paranoid about recurrence since I know prognosis and recurrence rates are worse the earlier you are diagnosed. I was leaning toward a BMX with reconstruction and was of course was informed that it was "no walk in the park." However, the surgeon also told me that his wife, who is a doctor who heads a local women's center and breast care clinic, said she would have a BMX if ever diagnosed with breast cancer and that many female doctors feel the same way. The implication there though was that it was based on gut feelings rather than medical research. I thought I would have til the end of chemo to make this decision and suddenly am faced with doing it now I think. I put in a call to the oncologist to see how long a delay I can have between the two halves of chemo in order to schedule a plastic surgeon appointment and schedule either the lumpectomy or the mastectomy once I decide.

I would appreciate anything anyone would share about their decision and any regrets they have, as well as anything concrete about how long you think I would need help caring for my 3 year old and 5 month old if I do the BMX with recon.

Kimberly, I loved your funnies.  The "chemoslabes" made me LOL.

Re old friends ... yes I have a husband of 28 years but I have older girlfriends.  And to one or two of them I say "You will always be my best friend because you know too much!"  So yeah, I get it.

CJRT: Tough decision.... especially when you are faced with making it before you feel like you're ready.  I can offer no concrete information on how a BMX works - other than what my plstic surgeon told me.  You already know what my decision is.  He told me that I would spend 3-5 days in the hospital, but that when I left I would be able to walk and get around. He said the first two weeks would be rough -  that I would be really sore the first week, less sore the second, but tht by the second week I would be able to get back to somewhat normal. He told me it would be 6 weeks before I could fully get back to my regular routine and 8 weeks or so before I could pick my son up again.  He said I could hold my son before then, but he would have to be handed to me.   Do you have a good support system to help you?  Are you a stay at home mom? Can someone stay with you for a few weeks? I know its easier said than done but I would hate for you to have to decide on a lumpectomy when a BMX is really what you feel like you need and want because you have no support. 

On a different note - Jupiter is so close to the earth right now.  My husband pulled the telescope out and I got to see it and 4 of its moons.  So serene and beautiful.  I love astronomy.  The moon is almost full and I stared at that through the telescope for a while tonight. 

ccjj, kate, and belle- Thanks for sharing your thoughts, information, and experiences. I know it is such a personal decision, but I find it helpful to hear how others have approached their decision and how they feel looking back.

kate- I know we have approached the decision in a similar way and both have the added stress of caring for a baby. My family has been very supportive and said to make my decision based on what I feel is best, and they will help me manage the logistics of it. I am a stay-at-home mom and do some part-time work from home.

had my last A/C chemo today, didn't start out good. first i called ahead to tell them i was on my way so when i arrived,hopefully meds would be there.

get there,find out they had to call drs office because they didn't have the orders- supposed to have been sent last fri. they had just got the orders when i got there(1 and 1/2 hrs after call)

so i had a hour and half hour wait for my meds, 2 1/2 hrs for treatment, needless to say i was not a happy camper!!!!!!

when i see mo on 17th i am going to ask her when will the order be sent ,on treatment 3 she sent it on the fri before. i assume it would be the same since she said she always sends them on fri. someone dropped the ball,again!!

luckily, the chemo nurse got the neulesta shot arranged for me,so don't have to deal with that,again.

PinkShirt - Hats off to you for participating in finding and participating in top research.  When this whole saga started for me, I wanted to participate in research with cryotherapy of tumor stimulating an immune response before surgery, was really excited about that possibility, but that research was on smaller tumors than what I had. As soon as I got MRI results I knew for sure that wasn't possible. The PARP inhibitors seem to hold a lot of promise.  Hope it turns out to be the next Herceptin.  I think of people who participate in research as the greyhounds that race way ahead of the rest of the pack.

Debbie - Spa day is great and I will use the tip of oil and sugar as an exfoliant on feet, which are horribly callused, but after chemo is done.  Heat and friction, even rubbing with hands, can exacerbate hand/foot syndrome, so am careful with temperature of water and really light hands when applying lotion.  Haha, and I do it sitting down on the toilet seat AFTER the shower.

CJRT - Do you feel pressured like you have to have surgery during this chemo break?  How long is the chemo break that the MO wanted you to take?  Was it a certain time or until a certain condition...like weight or blood counts?  I'm sorry, but no one can predict how you will react to BMX with TE if that is what you want.  Maybe you could get percentages but you never know if you are going to fit in the greater percentage and how the dice are going to roll. It just sounds like a pressure situation to be able to get through whatever your choice is and restart the chemotherapy in a timely manner.  Your tumor was reacting so well to the chemotherapy from what you said the MRI results were.  Do you HAVE to squeeze surgery in during this break?  It just puts a lot of added pressure on your decision about what you want to do and I think that's kind of unfair to you.

Kelli and Kate:  How lucky to have such broad and exotic childhoods.  My god, Bali and Holland.  (I am a quarter Dutch by the way).  I'd give a boob just to see Bali for a while, it's so beautiful from images. Certainly there is a certain skill you gain from moving frequently also that I never gained, the ability to deal with change quickly and adroitly.  I think there is a Darwinian advantage to accepting and adapting with rapid change right from your childhood.  Certainly this BC experience calls on us to adapt to major changes really quickly.  We have to say "The old plan is gone.  Everything has changed. Now what do we do?"  I think you have great life skill, just from that.

I really love hearing off topic stuff from the September ladies, from your kids and your towns, to your families, husbands, boyfriends, jobs, hobbies, successes and losses, and how you grew up.  It makes us human and care more for each other, so thanks for sharing.

Belle and PinkShirt - Going through treatment week and big treatment week.  Hugs.  Even my oldest friend doesn't understand what getting through treatment week means.  Big hugs.

RJ -  You okay?  It's not like you to not check in.

SCPMadi- Lwarstler had instructions for pics that I bet she would PM but I think she is tied up with her son right now.

Hi, guys...getting a little break from SE's so I thought I would pop on. Monday was rough with 5 hours of chemo followed by parent-teacher conferences until 6:15 at night, but we have gotten some better communication going with my son's teachers and a plan to help get him back on track. He has done well this past week and we are going to have daily communication in his agenda or through emails to make sure he stays on track.

Kate: I'm on day eight right now of my apparent never ending period. I thought it was supposed to be the one positive that it would stop, but noooo....it's just going to extend it forever!! They want to wait to the end of the week to see if it slows on its own and if not then I guess I need to find a new GYN, cause I've only used my family doctor for my yearly pap since we moved here.

Debbie: I'm glad you jumped in and put into words so much of what everyone is feeling...thank you. I'm on TAC and like you days 3-5 are really tough. Once it's all over though, I realized I am sick for about a week total and then feel ok a week and then almost normal for a week, so I get a 2 week break from the really bad SE's most of the time.

RJ: I am sooo excited about Colby, praise God he is coming around so well. I will keep him in my prayers as he continues to recover.

Kimberly: OMG...you make me laugh...count me in with the chemoslabes!! I did half the floor last week and never got back to the other half...I finally had my daughter do it Saturday. Don't even ask about the constant leaks every time I sneeze or cough which is almost constant...on to depends when I finish with pads for the never ending flow. I love what you have with your older friends...I didn't move overseas but moved several times and don't have those same relationship....such a wonderful thing to cherish.

CJRT: I'm sorry you didn't get the answers you were looking for. I did the lumpectomy and don't have any regrets yet after reading all the studies that indicate there is no greater risk with BMX....however, I am also triple negative and studies show that recurrences of triple neg. are not usually in the breast but elsewhere. So I had both facts to go on to feel good about the lumpectomy. I took me 2 weeks from the lumpectomy to be able to regain full use of that arm and shoulder without much pain, but I also had an internal node removed from under the breastplate that my doc said made it worse.

SCPMADI: I would be happy to PM you the instructions for pictures.

Maggie: (((((super big hugs to you))))). We have to give up so much and it really is a hard loss. I hope you are feeling better today my friend!

hi all, getting ready to go get my neulesta shot this afternoon with my daughter.

mags, big HUG for you, after treatment is said and done are you going for reconstruction? you may have said but i've forgotten. you will lose the weight, with A/C the steroids are mainly for nausea they made me sicker so i didn't have to take them except for premeds on day of chemo so hopefully you won't and that will help with the weight gain. that's why i dread taking steriods with taxol.

hi all, had a good morning,went to walmart before getting my neulesta shot. guess what i got real nauseated in the check out lane- i need to stay out of that store! lol took meds in car, helped a little got my shot now back home. got the fog head,too.

yesterday,i had my youngest son john bring my stationary bike, an old one not a newer design,up from the basement. boy, is it loud squeaky,sprayed it with silicone, didn't help. thought i could ride it and watch tv. oh well, i did do 2 miles on it yesterday and today,couldn't stand the noise after that and i was tired,too.

i think i'll hint to the kids about getting me a newer version for xmas,can't hurt right?

hope everyone has a good day!

I posted a question about doseage in the overall chemo forum, but would like to know if any of you know how much of this stuff we are suppose to be getting?  I did a little research and only found one site with information on TACx6 and the information looked a bit old.

I ask because my MO has increased my dose each time.  I am doing TCx4 and I think he has increased because originally he wanted to do TACx6 and I was more into TCx4.  Maybe he's trying to slip in a little extra for good measure :-).  Anyway, My SE's on this 3rd round have been more unpredictable and much worse.  I am managing, but not real happy about it and I'm thinking of telling him to go back to the amounts I had on the 2nd treatment.  BTW, my nausea meds and steroids have always remained the same.

Below is what's happening. Thanks!!

Treatment #1: Cytoxan = 700mg and Taxotere = 90mg

Treatment #2: Cytoxan = 800mg and Taxotere = 95mg

Treatment #3: Cytoxan = 850mg and Taxotere = 110mg

Rocky, I am on TCX4 also and getting:

Cytoxan 600 mg/m2 = 1314 mg

Taxotere 75 mg/m2 = 164 mg

Of course I am 5'8"" and 240 pounds, so there is going to be a big difference.  It sounds like you are looking for comparison.  You may have to look up how they calculate body surface area (the m2) to make a decent comparison.

Link to body surface calculator.

http://medicineworld.org/physicians/oncology/bsa.html

Assuming you are 5'2" and 110, the dose doesn't sound much different than mine, perhaps started lower. 

belleeast, Wow, how the heck can they get 4 treatments into something that usually takes 12?  Is that usual?  I think I will call next week if the neuropathy in the fingers doesn't get better soon. 

Kimberly, so if the dosage is by size/weight and you get 600mg of Cytoxan and 75mg Taxotere, isn't that a lot less then where I'm at?  It looks like I am getting around 40% more drugs and I actually am 5'2" and 130ish pounds.  I don't quite get the BSA calculator.  Is it showing that we are actually getting more than the 850mg in my case?