December 2012 chemo group
Anyone starting chemo in Dec 2012, we can all share on here. (I hope this isn't a duplicate thread, I didn't see one though).
I'm starting Dec 4. Taxotere, Carboplatin, Herceptin, 4 cycles every 3 weeks for 12 weeks. Then the Herceptin for another 9 months (one year total on that). I have "Chemo Class" next Wednesday with my nurse practitioner to get the full run-down.
Got my port put in today via outpatient surgery. It's sore and feels like a burning sensation, but compared to the bmx w/TEs I had two weeks ago this one was a breeze lol!
I will be looking forward to sharing experiences, ups/downs, advice, and encouragement with you all!
Comments
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I'll be starting around December 6th, still waiting for it to be scheduled. Right now I'm trying to decide whether or not to get a port put in. I had intended to but last night I got an email from the MO nurse saying it was really optional based on the chemo I was going to have. So I'm kind of thinking of going without it at first and if my veins have a problem then I'll have it installed. I have so many appointments coming up (blood work, vision, LGFB, need a wig fitting, etc.) that one less appointment is tempting! Steiner18 have you looked at wigs yet? How's your spirits holding up? I'm still working and feeling great and ready to just move foward with this journey!
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FriendGwen mine isn't "officially" scheduled either but my NP discussed Tuesdays and starting in the next week or two, but since I haven't had my chemo class yet it won't be until Dec 4.
I did go look at wigs but didn't try any on. There is an organization in Kansas City where I live called Cancer Action that gives them free to cancer patients, and when I went there awhile back they offered for me to take one that day but I felt somewhat guilty doing so since I wasn't hairless yet. I might go back next week before chemo starts and get one to have on hand when it's needed.
I'm still recovering from surgery (bmx 2 weeks ago, and port placed yesterday), so I've been off work a couple weeks now. But I'll be going back next week and working through chemo as I can tolerate. Thankfully, my boss is allowing me to work from home some if I need to also.
Do you know your chemo cocktail yet? In addition to the chemo, I need Herceptin infusions weekly for a year so it made sense for me to get a port instead of ruining my arms. I do have good veins, but for some reason when having my bmx a couple weeks ago 2 IVs blew in my right arm and my left side can no longer have draws or IVs since I had nodes removed there, so I'm not confident my arms could hold up even for just the 12 weeks of chemo.
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I'm having Cytoxan and Taxotere. I'll have six rounds every three weeks and then radiation, and then Taxoxifen. There was a smidgeon in my lymph node so that's why all the treatment. I had my surgery four weeks ago (same day you were diagnosed) and other than a little tightness I feel pretty much back to my old self. I had premanent implants, no tissue expanders. It makes sense that you are having a port. It seems like every day I'm given a new thing to decide about!
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Ok ladies, first Happy Thanksgiving to all - even though it may be harder this year to find the gratitude. I decided to post here are you are the next round to undergo chemo.
I post this not to brag or boast, but to let you know that for some.... me included - there are virtually no side effects to chemo.
I had 4 round of Cytoxan and Taxotere followed the next day by a shot of Neulasta to build the white blood cells.
My first chemo I was soooo scared imagining what it would feel like, would it burn going in.... so many crazy ideas. It was really non-eventful. It took about 2 and a quarter hours once they started the pre-meds that give anti-nausea and Benadryl and a saline drip.
Please don't be so scared. I wish someone had said that to me. Once your first round is down - you know what to expect.
So after - I can say I was a little tired, but napped as needed.
Following each infusion I NEVER....repeat NEVER:
got nauseous
got headaches
got dry mouth
got mouthsores
got aches or pains
vomited
had change in taste of food
experienced loss of appetite (though I wish I had)
had bad swings in my blood work (ended an wee bit anemic)
took any of the drugs prescribed except for the pain killers for Neaulasta and the Dexamethasone for the 4 days after each infusion.
So - it IS possible that you will have few or no side effects. I know that sounds hard to believe, but it happened to me and I pray it happens for YOU.
On to NEULASTA...
This was given the day after chemo. You should take over the counter Claritan anywhere from 2-1 day before your infusion (of course ask your Doctor....mine never told me)
If you have an injection of this please make sure they inject slowly. If it hurts going in (sting) tell them to slow down.
My experience with this is that anywhere from the 3-5th day after injection, my reaction was to feel little "muscle twitchy" pain pop in different areas on my thighs. Listen to your body carefully for what may be your first signs.
If you don't catch the pain early it will be harder to get rid of. I tried to ignore it and use Motrin, but within 30 minutes the pain shot from my hips to the base of my skull and all through my front and back ribs. Don't let yourself get to this point.
Try to make sure you have some pain killer on hand. Luckily I had a few hydrocodone left from my lumpectomy - other wise I would have been in worse shape. After taking 2 hydrocodone, I was lifted from the pain in 30 minutes. I slept through most of the day, but then I knew my onset trigger feelings and have been able to manage the pain.
My four rounds of chemo are over and my last Neulasta shot was given yesterday so I am still awaiting the BONE PAIN but I wanted to give you all HOPE because that's all we really have right?
I hope you enter your treatments with a victorious attitude, have no or very few side effects from chemo and anything you may have to take to boost your immune system following infusion.
I have come from the scared "Valley of Darkness" and you know it wasn't nearly as dark as I expected. Remember, everyone is different and chemo class will go over what COULD happen - but it may not happen to YOU. Go into chemo with an open mind and heart. It's path we must take so I figured I'd embrace and not fight it. Maybe that helped.
Bless you all... so many are wishing you the best, praying for you and sending you light and love.
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Happy Thanksgiving. Thanks Steiner for starting this thread. I start chemo on November 29th, but think I might have more in common with the December group than the November group. I will probably check in with both groups. I got my port put in Tuesday.
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Internutz--thank you for all the info! I am glad you were spared most of the side effects, that is encouraging to hear. I will have to re-read this Neulasta advice later on once I get started.
Bren--have you been feeling better since your port? We got ours put in the same day but I know you had more trouble with it than I did. I'm still a little sore but not needing pain meds, other than ibuprofen occasionally because I'm trying to do too much!
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I think i may be starting chemotherapy in December. I hope so because i want to start killing all the nasty little cells my imagination sees trying to give me mets. I see onco November 27. I believe they want me to do chemotherapy before surgery But that will be up to the onco doctor.
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Hi ladies, I am in the Dec group too! I had a micro metastasis in one lymph node and my oncotype came back inconclusive so I am in a grey area whether to do chemo or not. I wish I had more clear direction but I am going to be aggressive and do chemo. I feel it is the best decision since the cancer was starting to go into one lymph node. I am going for a second opinion to Sloan Kettering on Tues and will likely start chemo week of 12/3. I look forward to getting to know you and going thru this journey together. I am a 42 year old single mom with kids 4 and 13. I help to run a consulting company. I am so afraid of how I am going to manage all of this and keep working. I look to you for guidance and advice.
god bless all of you. -
Welcome Runnergirl and HopeFaithCourage. Sorry you had to join this special sisterhood, but the ladies in these forums are awesome. I hope you will find encouragement and help here.
Steiner, I still can't lay on my back b/c of the lung discomfort and the incicions from the port placement are still quite sore. I have done some research on it and it should heal on its own since the collapse was only 10%.
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Steiner~Thanks for starting this thread. I've been looking for someone to start a Dec thread. I thought I might have to do it myself.
I had scans on Wednsday to determine if there are mets, as tumor was large and there were 13 positive nodes. I see the onc on Monday, then I should know if I'm starting in Nov, or Dec.
Im hoping to do Thursdays, so I can get the Neulasta at the Breast Center on Fridays. Otherwise, I'd have to go to OSU on Saturday for the shot, which entails $5.00 for parking, a lot more walking (I use a cane), and maybe a longer wait.
So, I'm thinking, I'll either start on Nov. 29, or Dec. 6.
Either way, I'm glad you ladies are here so we can share our experiences, and encourage each other.
Blessings
Paula -
hi My name is Connie - I have an oncologist consult on Monday....freaking out and have no clue what to ask or expect
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Internutz1, thanks for posting such an encouraging post. I know we can all make ourselves crazy researching and listing all these possible side effects! I plan to be knowledgable and prepared but also optimistic and confident that this is a journey I will get through with grace!
Back from a wonderful Thanksgiving with my family! Nothing like being around them to lift my spirits and feel energized and ready to get through this next challenge! -
I'm joining the December club. I had my right breast and nodes removed on 11/12 and I did have a port placed at that time. I have terrible veins and bruise easily...for example my entire left lower arm is a huge bruise from the IV. I will be starting chemo in December, I meet with my doctor again on tues to review the final pathology report (which said of the 15 nodes, zero were positive) and determine my cocktail of chemo. There is a chance they may remove rads from the treatment plan but I did have an inter-mammary node that was positive so they are discussing the approach since the guidelines don't distinguish a mammary node from and axillary node. I betcha I will still needs rads.
I can honestly say chemo is the part i am most worried about - I worry more about my ability to care for my kids. After all the chemo and rads I will remove the left breast and start working on recon. My genetic mutation test was + so lefty's got to go (and possibly the ovarians down the road)
I don't even have a good understanding of chemo and the types - so I will be reading a lot about it between now and tuesday. I will be pacing with everyone to know what's going on, SE and questions to be asking.
Thanks for starting the tread
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HopeFaithCourage--welcome. Even if you do surgery first then chemo you can still start here to learn more info and share in our experiences! Let us know how your onco appt turns out next week.
Runnergirl--glad you are getting a 2nd opinion. I have to agree with you in the fact that I'd personally want to take an aggressive approach as well if I were on the fence. I hope your appt at Sloan Kettering gives you more clarity and confidence in the decision to move forward with chemo. I work full-time also, and have two young kids 7 & 8. My husband has been bearing the load for the last several weeks since my surgery. But this whole experience has definitely forced me to swallow my pride and accept help from others. I'm generally very independent and not wanting to "bother" others with asking for help, but there is no way someone can go through this without doing so. Reach out when you need help! There are many people out there whose love language is service and helping others and would receive great blessing in assisting you in any way possible. I'm worried about work too, but when it comes down to it I know I've got to put that on the back burner because if I don't care for myself I'm worthless for my job!
Bren--I hope you are feeling better each day. My port incision is a little sore, but I swear my collarbone got dislocated during that surgery lol! It hurts so bad, I have limited range of motion with my right arm/shoulder. I hope it goes away soon. It's not the worst pain of my life, but the dull and aching pain is taking its toll on me and turning me into a short-tempered grump at times.
Soteria--I hope the Thursday schedule works out for you. That Saturday thing sounds like a hassle. I'm hoping to go on Tuesdays myself. I've basically got it scheduled with my doctor, just not her scheduler. I hope your scan results bring good news, please keep us posted if you can.
Connie--you haven't met with an oncologist yet? I too had no idea what to ask. This whole diagnosis has brought me into a brand new world of information overload and cancer speak/medical lingo that I wish I never had to know. This site has so much good information though! I see you're also ER/PR/Her2+ like myself, I would recommend you check out the Triple Positive thread under the Chemotherapy forum if you haven't already. Good group of ladies.
FriendGwen--I have enjoyed my Thanksgiving too. We spent the last two days at my mom's house and she's been taking good care of me
I've been eating way too much and we even got out for a little shopping today. Nothing too crazy though, the online sales saved me a lot of time and headache from struggling with the crowds in stores lol Jenjen--good to see you in this thread too. I imagine others from the Nov surgery thread will be joining us here soon. I didn't know anything about the chemo drugs either until I went for my appointment last week and the NP sat down and gave me the 2 options. Then I went home and researched those drugs. I did find one good research article that gave me confidence I chose the right option of the 2 for my personal case, so that was good! It was kind of hard though, I almost just felt like the onco should have told me which one to do rather than give me a choice, since she's the subject matter expert. But I am thankful she presented me with options and laid out the pros and cons of both.
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I too will be starting T/C for 4 rounds on Dec. 3. I honestly did not think I would be needing chemo and was told by my surgeon I would not need it. I had a mastectomy on Oct. 18 for DCIS. Final pathology showed a 4mm area of invasive. Oncotype came back 34% I've gotten 3 very different opinions from different oncologists, but after the high oncotype score and being only 30 it seems its in my best interest to do the chemo. I am scared to death to have long term side effects from treatment! Glad I found somewhere to come for support! :-)
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Hello, my lovely sisters,
I will also be starting chemo sometime this month...I had an appoint with an oncologist who I really like but the infusion center left me feeling...like I need to go somewhere else. I have spent each and every day since my diagnosis online doing research. From everything I have read the chemo center should be welcoming, warm and safe. This place was not that...no chemo class, no nutrition support and the nurse I spoke to was distracted to say the least. When she told me they might be able to find a spot for my daughter to sit with me I was mentally checking out.
So...Monday I will be on the phone. I have faith in my surgeon and feel that he will direct me to a place I feel comfortable with... I'm triple neg so it adds to the fun! I am supposed to get 4 sessions of CT. Will not have Adriamyacin. My family history of heart problems is too strong to take that chance. I had no node involvement and feel confident that the CT can do the job.
Internutz, you are my chemo hero!!! I felt so encouraged reading your post. I am crushed about losing my hair. I finally have it to a length I love and foundthe perfect color only to find it is going far far away. I truly wantto rock the Bald, I do. My kids (22 and 18) are great and my husband plans on buzzing his head, I really hope I can convince him otherwise ;-) He had a mid-life beard that he could shave instead!! I'm going to a Look Good, Feel Better class on Monday and EMily (DD) and I are going wig shopping on Friday. I'll do the buzz thing before it start coming out. The kids want me to do henna tattoos on my head which actually sounds kind of fun.
OK..I have rambled enough. Happy to have found this wonderful sight and look forward to supporting/ and being supported by all of you.
blessings,
Nanc
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Steiner18- thanks so much for the message and for all of the kind words! I agree with all you are saying but sometimes I have difficulty asking for help or knowing what to ask for help with.
My owner of my company died of melanoma in July - it was so tragic and sad. And now I am helping to run the company - doing my old job and new job. My company is understanding but it feels like they still have the expectation that I shold get all of my work done without missing a beat. I have hired a cleaning lady....but as a single mom, i still have to make sure the kids have what they need, food is on the table and clothes are clean. I have to work to pay bills so backing off of work is not an option. Sometimes I just wonder if I can balance all of this. I would love to hear from others as to what are types of things that they ask for help with. I would love to hear others who are working full time as to how you feel you will juggle things - just looking for ideas and perspective!
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Steiner18--thanks for starting this thread. It's nice to see some of the November surgery folk getting strong enough to enter into the next phase of treatment. On Monday I'll be two weeks out from surgery--and I'll meet with my oncologists. (Yes, I have two--one is the main oncologist, the other is an oncology fellow at the hospital. Both are fabulous--anyone near Boston, I highly recommend them.) on Monday I'm sure they will give me my start date, which should be within the next 2 weeks. The plan is for me to do 4-5 months, first of AC and then of something else my addled brain can't remember--or at least that was the plan before my path report came in.
Here's a question for you all: are you preemptively cutting your hair? My hair is fairly long, past my shoulders. In an attempt to avoid the dramatic Lifetime Channel movie moment of brushing my hair and seeing a foot of it fall out--or the scene where the woman grabs her long locks and cuts her hair to under and inch, I've been considering a two-step approach: having my sister cut it to a bob this weekend and then having my hairdresser give me a pixie cut later this week. This sounded like a brilliant idea until late last night when I started getting cold feet. I love my hair. It's been short before--and every color under the rainbow--but it's ALWAY been my decision. I'm trying to make this as much my decision as possible but I'm struggling. Would love to hear your thoughts and advice. My sister and niece are begging me to do it... today! Gulp. -
Im starting Monday so I will hang out between Nov and here.....My port went in Wed..the pain is better but it itches horribly under the band aid...
My story goes like this, I am a caregiver to a beutiful 10 year old (I also have a 13 and 16 yr old) who has the same genetic disorder as I do called Neufibromatosis...she has MAJOR issues from it and has spent much of the past 5 years in chemo...so I have been busy taking care of her...finally got in for a check up this year and got my mammo, thought it was DCIS ended up I had invasive stuff in both breasts.(no sign of the cancer in right breast on mammogram no one had any idea to expect that.....we didn't check my nodes because I have a large benign tumor under my left arm that we really didn't want to mess with....could cause big issues....like growth or bleeding problems....
We still are waiting on her2 test should be back by Monday and then we know what we will be doing for chemo...and I just want to get started so I will get done...and my oncologist is one who just likes to get started too...I probably will hang between the 2 groups as I am kindof boarderline...
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Banksy: I'm planning the two step haircut as well. My hair is shoulder length right now. I work at a college and will have several weeks off starting some time the week of Dec 17th. I figure if I start chemo around the 6th I will start losing my hair around the 20th. So as soon as I'm done working I will get my hair cut into a pixie. Even if the hair loss hits quickly I hope to at least have a few days with the new super short cut before shaving it off. I'm imagining Anne Hathaway's current cut! Meanwhile I'll get a should length wig similar to my current style to wear once I go back to work. Hopefully that will fool the masses! So that's my plan!
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Hi, I had a lumpectomy + rads three years ago, and got to skip chemo then. However, now I have colorectal cancer and for that I will do some neoadjuvant chemo. It's a different drug than what you gals will get and mine will come in a take-home bag, but the side effects will probably be similar (except I might get to keep most of my hair.) I have to get it at the same time as rads. Double your pleasure, double your fun; but with a more negative twist. Hope no one minds if I look in here from time to time.
I have my port surgery comng up on Mon. My chemo begins Dec. 3rd.
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SLB11--welcome to the group. I bet that was a little frustrating getting different opinions from your oncologists! But ultimately in the end, I hope you are comfortable and confident in the decision to do chemo. I am 32 and with both of us being young, preventing recurrence is what we're after!
Runnergirl--so sorry to hear about the owner of your company. I actually had melanoma years ago in college, thankfully caught it very early (in situ) and surgery took care of it completely. Are there plans to bring someone else on board so you don't have to do both jobs forever? I totally understand about not being able to back off work. Do you have the ability to work from home on "bad" days? That's what I'm going to be doing. My boss said I can check in and respond to emails and work on some longer research projects (not time-bound) for those days I can't physically make it in to work. As far as asking for help, we've received it from our church, my coworkers, and friends--mostly meals (A close friend of mine organized this through mealtrain.com). It has helped a lot though with not having to grocery shop a lot and prepare meals every single night. Maybe there are some other single moms here who can pitch in some ideas too.
Banksy--I am going to shave my head. Just for the reasons you mentioned. I do not want to deal with it falling out in clumps. Once I start noticing it thinning I'm just going to shave it. My husband said we'll make a party of it, doing all sorts of funny styles as we go shorter and shorter that I'd never dream of doing otherwise
Heck, I feel like I should make the best of it, right?Keetmom--welcome to the group. So sorry you have to go through this while also caring for another with significant medical issues. I hope you have support when needed. Hopefully the 2 teenagers can be a big help when you need it. My port was put in Tues and I'm itchy too. The steri-strip for it is about to fall off already too. I hope you get good news on your Her2 test, please let us know!
FriendGwen--a pixie cut a la Anne Hathaway sounds like fun! I might do it just before shaving. I've always wanted to try one but never had the courage to lop off all my hair in fear I wouldn't be crazy about it. I got a wig this week, and some scarves and a couple hats too. Wanted to get all that stuff out of the way before chemo starts just in case I may not be feeling well later.
Elimar--welcome! I didn't even know chemo could be "take home" other than the oral meds. Sorry to hear about your 2nd diagnosis. I hope the double combo of chemo and rads won't run its toll on you and your SE are minimal. Best wishes for an easy port surgery Monday.
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I am getting a pixie cut next week, I have zero attachment to my hair but I think I will freak if I see huge clumps or wake up with half my hair in my bed. I can not see me wearing a wig or a scarf, I can tell I am going to be a hat girl...not a ball cap girl but winter hat (stylish hats...ya know).
edited to add: i will be working from home during chemo (or attempting to we shall see).
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I didn't think I'd want a wig at all, but I found one VERY similar to my original style. In fact, it may actually look better than my real hair! It was free through a non-profit cancer group so I figured I would go ahead and get it just in case. I will be working full-time and thought it might be more appropriate than a hat for the workplace. At home I imagine I'll just wear a scarf or beanie to keep my head warm. I do want to get some cute hats for wearing out of the house too.
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The drug I am getting is called 5-FU. If any of you get the drug Xeloda, it's about the same because Xeloda gets converted to 5-FU by the tumor enzymes. I want to read thru' some threads and see what has been said about Xeloda.
Steiner18, I'm going to have a porta-pump that I have to wear for 5-6 weeks. I don't know how that is going to go down. I highly doubt it will look like a fashionable holiday accessory. Maybe I can wrap a garland around it.
I have known a good number of women on here that lost their hair, but then decided to keep it super short when it grew back because they looked cute. Personally, I was traumatized by a parental-mandated pixie cut in third grade and have had longer hair ever since. Not sure how my hair will behave, but even if I don't lose it all there is nothing as unsightly as than long, thinning hair. I'll have to do something.
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As it closer to Tuesday and my onco appointment the more real all this feels! How can i be sick? Besides my normal tired i don't feel sick. This is so crazy feeling!
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I am wondering about chemotherapy brain fog. I'm concerned about being able to do my job safely. Anyone experienced this?
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Steiner---My 16 year old is a HUGE help my 13 year old is also special needs...I do have lots of support and I am going into it thinking the surgery was the worst part and I can get through this..YES I will be tired...but I am a SAHM and can sleep during the day...still on lifting restrictions anyway....so I can do this...having my daughter go through 4 years of chemo basically I can do 4 treatments...YES this is a lot bigger guns but I know I can get through this...and then get back on track for life! (hopeing the black cloud goes away...we have had a really really bad time in our house...which included sevaral vp shunt failures--drains fluid from her brain, a staph infection that included a 2 week hospital stay, a broken femur AND spinal fusion surgery so my breastcancer is just the cherry on top of 2012....)
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Keetmom, my 18 year old daughter had spinal fusion four years ago too. She's now one of my best emotional supporters reminding me the discomfort will pass quickly and it will all be worth it. You have certainly had your share of challenges but it sounds like you've picked up lots of strength along the way. We can get through this!
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I know that is where I am going to get my strength from....she is only about 2 months out of fusion and doing amazing....
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