September 2013 Chemo Group

Mamastewart, My toenail is on my left foot. it's the second toe...the toe equivalent of the pointer finger. During infusions 2-4, I used bags of peas to ice my toes and fingers. During number 1, I used little Icepacks, which did not work well, and that foot did not get iced well. It turned black a few days after the first treatment, got a big white line across it a few weeks later, and came off about a week after that. It didn't hurt, and doesn't now...just one of those things that makes me roll my eyes. If it were summer or I were headed to the beach it would bother me, but it is cozily buried in some thick, wooly socks for the winter.

LHL, Since you are not having your other surgery at the same time, here's my advice that I did not give you last time because it would not have applied. Do everything you can to get your abs in decent shape before the surgery. I did and I can't tell you how much it helped. You can not easily sit up using your chest or arms for a few days, but if your abs are strong, they will compensate for that. A thousand times easier said than done with chemo fatigue and pain, but I am sure any extra strength will help. If there was pne big thing (other than dumb luck) that contributed to my easy recover from the surgery, that is it.

Speaking of the beach, I forgot to play the lottery when i found out i was doing 4 chemos and not 6...so i am playing today...and if i win, we are all going someplace warm to celebrate the end of chemo. Ok, so my odds are a few million to one. Maybe for once i will be on the "right" side of the odds.

Viji - Congrats on your last TC!!!

Kbeee - Thanks for the advice. I had heard it's best to get in shape before this surgery, but it's like you said, easier said than done! I will try to work on my abs, though, between now & then, and hopefully having a month "off" after chemo will give me a chance to concentrate on that. Hope you win the lottery - I could sure use a beach trip!! :-)

Finally finished my last TC treatment woo hoo! So happy to be done with this step and also very grateful for the cold cap machine trial I was on as I kept my hair,, for which I feel so grateful. I am also so grateful to all of you here. Your kindness, understanding, wisdom, comedy, rants, experience, advice and love and support have been invaluable to me. I chose not to tell anyone other than a few people who had to know due to work commitments etc and not living in my home country has been isolated at times. My family have been my rocks and you ladies. I still can't believe that I have had this disease and how much it has changed me and my life. I now know that I hate chemo, that there are some amazing people out there dealing with the toughest situations with such grace and strength, that I have been given many blessings during this time and learned many valuable lessons, that I was not always getting before this time, that family and friends are the most important, that all that matters with my children is that they are happy, that the world is so full and rich with great beauty, that comparatively I have it easy compared to some people in life, that I want to give way more than I have done, that love is all that matters and how unfair this disease is for women, men and especially children, that life really is short and each moment is so incredibly precious, that I am compassionate but need to practice it more for others and myself. I no will strive to be happy during the good and the bad because it might be my last day or week or month or year. Thank you caring and supporting and inspiring. You are all truly beautiful, powerful and amazing and I have been honored to know you and share with you. Thank you thank you thank you K

Art,

I get my neulasta shot in the arm.

I am also working.  I am at work about two-thirds of the time right now.  Fortunately, I had some sick leave saved and am using that and annual leave to get through chemo and surgery recovery.

ekaterina, congrats on your last treatment of tc, and what u said is so true. Very nice. This disease is so hard to accept and the treatments are extremely hard, but its all recovery all we need is our support network to get through this And we will.

By the way my daughters name is katerina, love that name

Are u done everything?

ekaterina congrats on finishing and the success of the cold caps! You write about this journey so elegantly and I wish I could but I can't so I'll just second everything you said!

I had my second rad yesterday and so far no big deal. Takes much longer than I was prepared for (for me at least). The first rad was 1.5 hours (also had to wait on a nurse to tell me everything the doc had - I know it rarely happens like that right?) and the second over 30 min. But the rad techs are wonderful - as nice and professional as chemo nurses if not more and say it will get quicker. They say symptoms may start in 2-3 weeks but everyone is different. Where did I hear that before? But so far so good.

Kbee, may you win the lottery! If you do, let us know. I would be extremely frustrated at the PA for being so non-responsive. I'm having a similar problem with the nurse that acts as the "gatekeeper" for my PCP. I have often thought of changing PCP's because just because of her. I think if I complain, it will only make matters worse. It typically takes several days and lots of phone calls to get her to respond. That is SO different than how my MO (and her office) responds to questions I'm able to send her on-line. I typically get a well-communicated response in less than 30 minutes from that office. This gatekeeper nurse, on the other hand, just seems to think she is god's gift to the world. I like my PCP, but really don't like the way their office is run. I live in a small town and have very few options for my local care. I drive 2 hours each way for my BC treatments at Vanderbilt in Nashville. That place is huge compared to the little "medical kingdom" in my little town, but Vandy is hands-down better at recognizing the needs of the patient.

Lociti and Peacockgirl any other Triple Negatives..have you checked out the TNBCfoundation.org website? I didn't like it at first because it seemed so depressing, but I have grown to think of that site as an excellent source of TNBC related news and a great place to ask questions specific to TNBC. They are an excellent source of knowledge and encouragement.

Alfranco, thanks for letting me know I'm not the only one crying a lot. I think so much of it is due to my steroid crashes. I'm on a two week break between the end of my 12 weekly taxol treatments and the begining of my 4 dd AC treatments. I'm going to discuss these hard crashes with my MO when I start AC this coming Tuesday. I just don't need to be going through this. I'm thinking Ativan or something similar might be in order for those days. I just don't believe I should be suffering unnecessarily if I don't need to.

Lighthouse, I am glad you were able to get your surgery date moved up.

Viji and Ekatrina, congrats on finishing your TC! I was happy last week when I finished my 12 taxol treatments. Now, we are all on to the next phase of treatment.

Ksimpson, that is wonderful news on your lymph node! May the shrinkage continue!

Lisasp, it is good to know there is life after chemo. I'm really looking forward to getting my energy back.

Happy Thanksgiving to everyone living in the USA. Even though my tastebuds will make the food less enjoyable, I know I will cherish getting together with family very much!

Kay

simplelife, yes I've been to the TN breast cancer foundation website, frankly it just freaks me the frack out. I also get REALLY irritated with how the media portrays TN. I read the other day in one article that "sadly only 3 out of 4 triple negatives will see the 5 year survival mark". 3 out of 4? That's 75%! And I personally think that's pretty good. The media really hypes up TN and it bugs. I also get really annoyed with the whole "an hour of exercise per day cuts your rate of recurrence by 50%". I'm over here in the corner with my hand up saying "um. I workout 22-25 hours a week as a fitness instructor"..... It didn't do diddly to keep ME from getting breast cancer. Sorry that rant has been building in me for a long time.

Thanks LisaSP for the little ray of sunshine today. It is nice to be reminded that even when we are in the thick of the it, we will come out the other side and things will get better.

So thankful this 2nd round of Taxol was better than the first. And what do you know? I had pruney fingers on Monday and little numby tingles right after reading about it on here. Those have disappeared. I don't have horrible crying jags as much now that the Elavil is kicking in (and dexa steroids are way less on infusion days now) but last night was bad sleep all over again. Hot cold, hot cold every hour on the hour wakeup. I simply do not understand how I can be SO tired and unable to sleep.

Thanks, LisaSP and Josgirl for the updates on how rads is/isn't affecting you.  I'm more nervous about the radiation treatment than anything else.  Looks like I'll be doing 7 weeks of daily radiation starting in mid-February.

Had Round 5 of 6 of Chemo today.  Went well.  Apparently some blood work about my liver is a little concerning.  I'm hoping it is just because we are at round 5 and it will spring back once the chemo is done.  Anyone know anything about albumin levels (slightly low) or AST/ALT levels (both high)?

Appreciate reading about everyone's experiences.  Makes it easier to stay strong!  You all Rock!

KBee: I haven't iced at all..but I am the queen of speaking too soon and Houston, I think we have a problem. I just looked at my nails (I forgot to paint them again UGH!) There is a band of dark red/brown above the white half moon on both my thumbnails. Wonder if I am going to lose them now too. My big toe just had a blackish-bruised band in the middle. Who knows, I very well could have dropped something on it and forgot-chemo brain.

knightzoo: You're right, I couldn't access it either but then I could again. Weird. Anyway, here is what it says if it doesn't work again:

Ask a Pharmacist

—Shirley Harvey, RN, BNS, OCN

Pegfilgrastim (Neulasta) is a granulocyte-colony stimulating factor (G-CSF) that is used to prevent neutropenia in patients receiving myelosuppressive chemotherapy. G-CSF stimulates white blood cell precursors (myeloid cells) to grow and differentiate. The concern with administering G-CSF on the day of chemotherapy is that increasing growth of myeloid cells may increase their sensitivity to cytotoxic chemotherapy agents. Since cytotoxic chemotherapy causes the most damage to rapidly growing cells, giving an agent that causes myeloid cells to grow faster while chemotherapy is present may cause more toxicity.

As next-day administration can be a significant patient burden, especially in rural areas, some researchers have questioned this assumption. Some retrospective trials of selected chemotherapy regimens have not noted increased neutropenia with same-day administration of G-CSF compared to next-day administration. However, same-day administration is not widely used in clinical practice because of insufficient evidence with many myelosuppressive chemotherapy regimens. The package insert for pegfilgrastim notes that it should not be administered between 14 days before and 24 hours after administration of cytotoxic chemotherapy. Optimal timing is considered to be within 24 to 72 hours after chemotherapy administration.

My onc said that I could wait until Friday to get it. Hooray for not winding up on my couch at dinner time! We also talked in depth about radiation and my fears of it. He said that I am kind of in a grey area with not having rads even if the cancer is gone because we are pretty sure that I had cancer in my lymph nodes because of how they look on sonogram. I don't know, maybe I should do it. He is setting me up with a RO to discuss my options and help ease my fears. I was interested in the "seed" that they can implant when they do surgery to focus the radiation and limit other tissue damage. (sorry don't know what it is called)

KJ: We are almost surgery buddies! I have my lumpectomy and SLNB on the 15th. You may want to check with your RO about what I mentioned above ^ too. My onc said it is a fairly new procedure and has shown great things in breast cancer treatment. He said I would probably only have to have 3-5 weeks. I wonder why you have to have more? Maybe because I am ER+ and get to take the lovely pills for 5-10 years?

LisaSP & Josgirl: Thanks for rads updates! You are helping to ease my fears and know what to expect. That helps a ton!

I got #5 under my belt today. I had a couple of mild reactions, but nothing like #3. I started sneezing like crazy, my nose all stuffed up and my throat got like thick secretions in it so they stopped the Taxotere for awhile. I am just allergic to it, I guess. The symptoms went away in about 15 minutes and they re-started it. They were talking about Benedryl but I am glad they didn't because I drove myself and my baby-sitter had 9 kids she was watching that wouldn't all fit in her car to come get me lol. ONLY ONE MORE LEFT TO GO!!!!!

knightzoo,

Congrats on the mini-lottery.  My doctor's office offered that to me for the neulasta and the Herceptin.  The trade is my medical information being made available to them for research purposes (confidentially, of course).

mamastewart
Thanks!  Glad Round 5 went well for you too.  I had a few strange feelings in the chair too, but didn't mention them because I didn't want them to add more drugs to the mix today.  Ended up fine. 

Happy Thanksgiving!

kj - they usually run a CMP (complete metabolic panel), which includes AST and ALT, periodically during chemo to check organ function.  Since the drugs you are on are filtered each through the liver or the kidneys, they have to check and see how it is being tolerated.  You are correct that chemo is inflaming and this is showing up as higher values on AST and ALT, and they will reduce the chemo dose or delay if those numbers indicate organ failure, or something close to it.  Some elevation is normal, they are looking for out of whack numbers.

Thanks, SpecialK.  I did some Dr. Googling and my numbers are elevated, but not grossly elevated.  The nurse said, today, that they would keep an eye on them.  Since I only have one more chemo treatment left, I am hopeful that all will be well and things return to normal in January.  I am going to try and double my liquid intake during this round to see if giving the body more flushing power helps.

Happy Thanksgiving!

Ekaterina and Viji, Congrats on finishing that last infusion!

Lisa and batcatlady, Thanks for the updates. It does help to see that things will change soon.

kjsimpson, great news about tumor shrinkage. May they continue to shrink even faster from here on out.

Mamastewart, I hope your nails hold on!

Knightzoo, Congrats on winning the lottery and not having those copays. I didn't win the big megamillions lottery, darn it. I am ready to go someplace warm.

LHL, I am exhausted just reading about your day. I hope you can put your feet up for a few hours on Thanksgiving and get some rest.

It is Thansgiving. I am thankful for a lot, but specific to BC, I am so very thankful to have had all of you September ladies here to get me through these past few months. You do all just "get it." Venting here has helped me to keep more positive with my DH and especially my kids, because once I let my frustratious out, I generally feel much better. I am thankful for my BS and PS who have always been incredible through this ordeal...both so talented and compassionate, and very willing to do whatever they could to get me back to my job functioning fully. I am thankful for my MO. Though he really, really frustrates me sometimes when he does not take some of my odd symptoms as seriously, I do feel that he gave me a voice in my care and was flexible on how he typically does things, and some of the more typical side effects which could have been more serious he did evaluate thoroughly to rule the bad stuff out. I am thankful to my coworkers...they showed up at my house with a fire truck 15 minutes after hearing of my diagnosis...bearing flowers, ice cream and pie... 24 of them shaved their heads with me. Not a day goes by that I don't get a call or text from one of them checking on me. I am also blessed with an amazing group of friends who have filled our freezer with more food than we can possibly eat...without ever being asked. My Dh and kids have been beyond amazing as well. I am feeling very blessed today.

Happy Thanksgiving to all that are celebrating. Hope your taste buds co-operate.

Funny how I come on today to find many of you chatting about friends & support from them. Yesterday I was in a funk thinking just the opposite. My so called friends, some I've known for 20-30 yrs, all dropped me like a hot potatoe when I told them I had bc. I've had no phone calls or e-mails from any of them. There is one lady whom I've known for maybe 2-3 yrs. Don't know her well, but she will call me on occasion to see how I'm doing. She is gone to the USA for the winter now though. So in this regard it has been a very educational experience for me. It has been hard enough dealing with everything let alone dealing with the fact you have NO friends, no support. I'm struggling also about going back to work in the spring. The people I work with are very church oriented, even make visits to people in the hospital that are all alone. So where were they when I needed a call just to say hi & ask how I'm doing???? It will be hard to face them. OK pity party over. Just had to get this off my mind. It does make me happy to see that so many of you have made good choices in your friends over the years. Cherish them.