Is There A September 2011 Chemo Group?

hi all, i hope all who are getting treatment this week have no se, if you do hang in there. for me the daylight started shining thru on day 7,thank you ,lord.

i need to start walking again, i am getting so flabby, of course i didn't have very much muscle tone when i started this battle but now it is worse. it is hard with no energy.

it's a beautiful day here in illinois supposed to change tonite,rain and back to the 50's.

Just got home from Round 3 and I already feel worse than last time.  I don't feel nauseaus really, I just feel really weird.  I feel very out of it and just kind of crazy.  I will go lay down as soon as my sone does - which thankfully is around 6:30 or 7:00.  What is it with the third treatment that seems to have people feeling worse.  I just had a feeling that I would be feeling worse this time round.  Maybe because this is the "hump" treatment.  I'm at the halfway point.  Only 3 more to go.

I also scheduled an appointment with my OBGYN for tomorrow morning.  I am still having bleeding issues and I just can't go like this for the next 3 months.  That would be the worst. 

I did ask about treatment thanksgiving week since my treatments are on wednesday and they are closed on thursday and friday. How would they give me my neulasta the day after if I go in on Wednesday. They told me that I could get my treatment on Wednesday and they would show me how to give my neulasta to myself and they would send it home with me.  It was either that or delay my treatment a week and I am not tying to do that.  I want to expedite this if anything, not slow it down. 

Also saw my second plastic surgeon this morning and am definitely going with the one I saw last week.  This guy today was very informative but didn't win my heart (or my boobs I should say).  So I am sticking with Dr. Beegle and with my surgery day of 02/08/12.  He was recommended to me today again, and also by the surgeon I saw this morning.  I am excited for this all to be done. 

Recover well ladies.... I am going to go take it easy. 

UGH to treatment 3!!! My eyes are giving me fits. Double vision for up close computer/kindle reading. Sore throat/mouth and upset stomach are ramping up.This sux! 

On the upside, I'm now officially half-way done with the TCH!!!!

Khegidio - I was due for treatment the day before Thanksgiving too, but they moved my to Tuesday and my Neulasta to Wednesday. Good luck with your OB/GYN appointment tomorrow. 

Kate - Moving the schedule by 1 day forward as Kelli did is a great idea iff you can do that.  I had great anxiety over giving Neulasta shot also.  The anxiety was way worse than the shot.  The needle is small and extremely thin, sharp, such that it does not hurt to poke it into a pinch of fat on the side belly.  I was surprised.  Compared to what Neulasta does to you for side effects, and you have already had that, I would say giving the shot itself rates 1 on a scale of 1-100.  I just had a disgust towards needles and my ideas about IV drug users that I had to get over.  Lot of hurdles to jump on this journey, but believe me the shot itself was painless and not difficult.  In retrospect, I do wonder why my counts rebounded quicker when the first round the nurse gave me the shot in the arm (muscle), then were slower when I self-administered into some side-pooch belly fat. I wonder about that, but not smart enough to sort out if that is a factor.

One week post chemo and I have fever tonight and my counts are down.  C'mon Neulasta.  Kick in pal, God knows you are expensive enough and you cause suffering up the wazoo.

Michelle - It's no walk in the park.  You really want the port if you are scheduled for Adriamycin.  It will be of great benefit to you and your veins.  I would question the benefit of Adriamycin if you are HER2-.  I also had Adriamycin suggested to me and questioned it given the cardiotoxicity.  It seemed like research was showing it only gave benefit to a subset of HER2+ women, which I was not and you are not.  Ask your MO why and ask for studies or percentages that show benefit in your situation, and take a pen and paper with you to write it down and research it.  Maybe the BRCA is a different factor thrown in.  I still say ask for proof it's beneficial.  If it is, then do it.

As to why I bother with chemotherapy and cancer treatment, well, I am against chemo in general as not adding much life and at very great physical and emotional cost.  However, I have seen my sister live 6+ years after diagnosis of stage IIIa, 7 cm at diagnosis, multiple lymph nodes, and HER2+, which at that time was a very poor diagnosis.  Herceptin was just becoming available and approved for outside of trials at that time.  If I hadn't seen her survive in these circumstances, and I know it was extremely difficult during treatment and came at a cost, I don't know that I would have the heart to go on.  I feel your pain, giving up breasts, gonads, and hair.  Mine are all gone at this point too.  Believe me, it's not where I want to be or thought I would be at 50.  Breast cancer therapies are better and more successfull than they were when your mother died.  A lot of women still die, but there has been so much success in therapies at extending life in this area.  Do not lose hope.

We are always here to listen and answer what we can Michele...welcome to our wonderful group..You are family now..You are ONLY 51 so give a good fight to this ugly beast.  Your stats look pretty good looks like they caught it early...what stage did they put you?.  T stands for the taxol/taxotere group  A is for adriamycin--the red devil..makes you pee red after infusion for a day or two and C can usually stand for cytoxin or sometimes carboplatin (sp).  A--red devil---causes some cardio effects that can be permanent for some.  You can also google the effects but be careful googling anything as some of the info out there is not  100% correct.  I just finished my first four rounds yesterday with Taxol first as I am triple negative--no hormone response here and this is how they are starting to treat trip negs with taxol then A/C  It is not a picnic..I get treatments every 2 weeks (dose dense) and have about 5 days of down after treatment then bounce back to myself for the next week and do whatever I want during those good days...shopping, lunch with friends etc.   I take it one day at a time to keep myself sane.  Chemo is halfway done so I celebrate the little things along the way!!  Keep up the faith and YOU can do this too!!!!  Condolenses on your mother.  Even though time passes they are with us everday.

Maggie 

Kate- Your little vampire is absolutely precious!

Michele- I'm so sorry that you find yourself here with all of us in a similar boat. I echo what everyone else has been saying though. I just telling myself that I will be like these other women whose stories we were bombarded with this month of October- telling about our past experience with BC and how we have completed our treatment, moved beyond it, and our back to our "new normal" lives. It doesn't feel like it while we are in it- especially this portion- but rationally I know it will happen, and I know I must find a way to cling to that when I am at my lowest. As for the Adriamycin, others have shared their knowledge of it. Mine is limited to what my oncologist told me, which was that I was told that I would need it if I were node-positive. 

Hi everyone, first off, really missed you all. Week after last chemo just really kicked my behind to where I just couldn't get on and then found out my 12 year old son is self-destructing in math and beginning to in English and have spent any energy I had on trying to find out what is going on and get everyone on track for helping him. He has Asperger's and teachers forget that he cannot initiate it when he needs help. We have it set now where the teachers have to communicate with me at least weekly, so hopefully we can stay ahead of this next time instead of picking up the pieces. He is a really smart kid, but when he gets overwhelmed, he just freezes and does nothing....so for two weeks that is pretty much what he did and no one called to tell me he wasn't turning anything in or participating all of a sudden. He seemed fine at home...uggh! I'm too tired for this!

Kimberly, et al: Thank you for all sharing; it was a big sigh of relief to read of all the struggles so similar to my own. The incontinence issue started for me this week every time I sneeze...which is often with this ridiculous sinus stuff I can't get rid of. It sounds like our SE's are near identical and some days I just can't imagine living like this through January!  However, you can make yourself sick with guilt trying to be too much the superwoman! After all who do you feel sorrier for, the guy who has no legs or the one lying on the ground with a freshly broken leg in pain? We are the guy on the ground in pain and it is ok to yell ouch, cry and wish for it to go away. I was tearing myself up thanks to all the people who were telling me how they or someone they knew went through all this and still managed.......everything.....like a trooper. SE's are so different for everyone and I really don't think people get how hurtful they are being when they are making that comparison. It's like suggesting you are wimping out and it isn't! It really does suck and hurt and the only relief is to stop which means death, so we have to choose death or our broken self. We really are victims of a serious cruelty about which we can do very little.

SE Helps: My bone pain was awful and I tried Claritin but it didn't work so I went with Percocet. Then, a visiting nurse explained that it is the combination of Claritin with Aleve that was found in studies to be effective and suggested I try one Claritin with on Aleve daily and then just Aleve every 6 hours or so. It actually really did work this time to make the pain bearable (even though it didn't go away all the way) and I didn't need the Percocet. Also, I had a terrible, splitting headache and the nurse mentioned that Zofran they gave me for the nausea (the only thing that did work) was probably the culprit. I stopped taking it and they gave me something else and the headache stopped. My Onc wants to talk to me about using Marinol next visit and I am considering it. It is a synthetic form of the chemical found in marijuana that is helpful in relieving nausea, pain and also acts as a mood lifter ( I bet! LOL)

RJ: So sorry to hear about Colby and I am praying for both mom and baby.

Michele: Hi again, so sorry you have to be hre but am also really glad you found this group, these ladies are all awesome! The emotional roller coaster ride with all this is just insane and I cannot imagine how much more so after thinking you are clear. TC- is short for the chemo drugs Taxol (taxotere) and Cytoxan or Cyclophosphamide , TAC is short for a combination of the TC plus Adriamycin (also called the "red eveil" AC, TC, or TAC are just shortened ways of listing which chemo meds are being used. SE is short for Side Effects. I'm really glad you are hanging in there but totally get feeling like giving up. Just try to remember that these treatments will end some day and being ER+ gives you an even greater chance that 5 years from now this will just be a memory of another rough moment in your long life. In the meantime, it is tough and we will be happy to have you join us. In regard to Adriamycin...it can cause heart weakening and is usually an issue only during treatment, but there are always risks. I would suggest two sites. The NCCN sets the national guidelines for treatment and you can see exactly what is suggested for your particular cancer type and stage here: http://www.nccn.com/files/cancer-guidelines/breast/index.html#/66/ . You can also post on the chemotherapy forum on the John's Hopkins website and they will tell you what they would recommend and why here: http://www.hopkinsbreastcenter.org/services/ask_expert/ . I found both really helpful in deciding about my own chemo treatment options.

Ok...I would love to say more to everyone else,  but I think I have written enough of a book for now.so I'll just say I love you guys and thank God for your willingness to be open and honest and to share in this journey.

Hi Everyone,

I had a terrible day woke up nauseous and tired, threw up my lunch. First time I have felt this bad this far post treatment. I managed to nap for a few hours this afternoon followed by a nice shower and some food. Feeling mostly normal now. I have this horrible smell in my nose. It is like something is burning.No one else seems to be able to smell it so I guess it is just me. 

Got a call from some random company in the US stating someone tried to buy $800 worth of shoes on my Visa, spent 30 min getting that all sorted.  Apparently my credit card was compromised at the hospital when I swiped for parking last round.

I too have been experiencing incontinence, especially with the constant cough. I have taken to wearing some sort of product all the time. The worst is when I just went to the washroom and I cough or sneeze and urine still escapes. It seems I am incapable of fully emptying my bladder.  Hopefully this SE will not be permanent. 

On a positive note my nurse came today to give the neupogen shot and told me they want me to start giving them to myself. I am not squeamish about these things and think it will be good to not have to wait around for her all day for 5 days post each treatment. 

Sarah, I just wanted to say that I had that too -- the burning smell.  For me it was like constantly smelling cigarette smoke, but no smokers in our household and it wasn't our neighbors.  It finally went away after a few days.

It sounds like maybe someone put a "skimmer" on the hospital parking lot's reader?  That really sucks.

*hugs to all*

Lee Ann - Well write a book and don't feel guilty.  When I am really going under from SE, all I can do is read the posts, and I want to hear how other people are doing but I am too miserable sick to write myself.  The only knowledge I have of Asperger's was a site I hit called "crazy meds" by someone with Aspergers.  The guy is a genius and the site is incredible, and Ilearned a little about Asperger's from the site, how one can be really so high IQ and not really functional at the same time.  I just hit that site years ago because I am on Zoloft for depression, and I always wonder if I am on the right med.  Would the grass be greener with another med?  One of the most comprehensive sources from the patient's perspective on meds that I found was by this guy with Asperger's.  Good luck with your son.  He may be another genius with great gifts to the world in his time and in his way.

Tx #4 of taxol was on Wed so I am waiting for the train to hit me today about noon it usually starts.  Neulasta was yesterday.  Feeling crappy right from the get go this time.  Just never know.  The port was uncooperative this time...some type of clog...no back flow of blood so a little delay while the meds cleared whatever was in there.  Got to hospital at 12 and left at 7:45 so it was a little faster.  Hear that the AC part is much faster to administer--woo hoo.  I have officially gained 10 lbs since beginning chemo....at least I had lost 30 going into it I guess.  Hope it does not continue.  They are so much harder to take off then put on.  The physical therapy is really helping my cording in both arms and down my sides.  The pain that keeps me from sleeping on my sides is all but gone in just a few days.  Hope to keep the LE away!

Happy weekend to all and lets push to the end of this phase of our treatment plan!  Just rebooked our anniversary trip for April of 2012...can't wait to get away and relax.

Maggie

SCPmadi: How Ironic is that, We just had an issue with OUR Visa too being comprimised at a Local Flowershop, we made 2 HUGE charitable donations to a Christian charity in the UK !!!!!!! and bought Christian childrens books from there as well, Funny we never got them Books..... 

hi all, yesterday while talking to chemo nurse, she said i was at risk for LE for the next 10 to 20 years, shocked me didn't think to ask exactly how to prevent it or what precautions to take. it was when i was telling her family history of cancer for the brca test, my aunt had breast cancer back in the 60's had radical masectomy and had LE. next time i will ask, hopefully i will remember.

kimberly, nowadays i am living on campbell's chicken noodle soup made with milk and ritz crackers the week following chemo. well, mostly i find when i do eat other food i pay the price big time. it hasn't stopped me tho if it is something i really want. but i've finally learned my lesson this go round i'm sticking to my soup. hoping the stomach issues will be less.

dr said when i start taxol, i have to take steroids the day before,day of,day after. CRAP! i reminded her about my reaction, she said she would lessen dosage but i have to take it because of possible allergic reaction to taxol which may not occur til 2nd treatment. DOUBLE CRAP!!! can anyone say HELLO weight gain!!! CRAP!!!

what are the side effects of taxol for any of you on it now?

Hi

Did chemo on Monday and feeling really crappy, sore, tired and depresssed. I can not believe how many times I have cried today. This treatment went better initially (no headache on Halloween) but I have definitetly felt more crummy this time out.  

I am hoping taxotere goes better.  Like everyone else here I just want his to be a bad memory.

I hope everyone has a good weekend with minimal SE's.