Cytoxan Taxotere Chemo Ladies- February/March 2013

TeamKim

One week until first chemo, and I am feeling, oddly, calm....after the mood swings of this week, it's a relief.



The hats I ordered from Just in Time Softcovers arrived today. With some trepidation, I actually took them out of the bags and tried them on, and...... They look CUTE!!!! I was prepared to think I would look awful, because I am not a hat person, but they really are adorable. By the time my hair comes back I will probably be sick of them, but right now.... Seriously! CUTE!?! I was so inspired that I looked up a YouTube video on head wraps and took a try at doing one with a scarf I dug out of my drawer -- CUTE!



I will probably have hair for another 3-4 weeks from what I have been reading on this thread, But I think I may be -- a little bit -- embracing the upcoming new normal. Maybe?

JeriGrace

Hi all,

I continue to be amazed at how the Firecrackers are moving through this together. The things you all are posting today are the exact same things on my mind! First, the hair. I am also sporting the vulture/chick look. It looks so crazy! It's sparse and sticking straight up and so white (not grey!). For some reason my sideburns are longer than anywhere else. This is going to be an interesting look. I didn't lose much arm hair but haven't shaved legs or underarms for a long time. Also lost about half of my nose hair, which means my nose runs continually. But no mustache!



I have really been worrying about recurrence and second-guessing having a lumpectomy vs MX. TwoHobbies, my DX is very close to your first one. My oncotype was 19 (grey area). But my MO said with anything over 4cm he felt chemo was warranted. I knew I would have radiation with the lumpectomy. After rads, I'll be taking an AI, Arimidex or Femara (I had a hysterectomy 12 years ago). Wondering if I'm going to be doing self-exams three times a day! How do you live with this fear?



TwoHobbies, glad your first day back went ok. You are so perceptive with your 3 groups of people! I went in for a half-day of meetings in preparation for starting back on Monday and saw all of those people today. : ) I'm glad you have a short first week (assuming you have a M-F job). I'm really worried about my stamina for a full week. And I hated putting my wig back on today!



It's almost the weekend, thank goodness. Think I've been through every emotion in the book this week! Hoping for a drama-free weekend. Good wishes and extra energy going out to all of you with SEs this week. Take care of yourselves, warrio

ckmoss

JerriGrace-I, too, have been thinking about recurrence more...have been in a bit of denial I guess..but, since the end of chemo has come...I am thinking about things I can do to help prevent more.

For you guys just starting or about to start chemo..it can be hard and when you are in the 3-4 days of hardest hitting SE's..its hard to imagine doing another..but one thing I found..seems to be like childbirth..through it..I was like I CANT DO THIS...then as soon as I felt better..its like you kinda forget EXACTLY how it felt..hard to describe..I know, I often couldn't even remember details about the first 3 days when I looked back. I always wanted to have the chemo..I called it my Chemo Cleanse...if there was a cancer cell in my big toe or floating around somewhere I wanted it gone!

TeamKim=I love that those are going to look so cute on you! I have friends that look awesome in them! (I , unfortunately, am not one of them)..But, you are going to look Chemofabulous!

So, today I went for a walk on the trail at my nearby hospital..very pretty through woods and by a stream..walked a 1/2 mile. This is huge for me..as I haven't walked...as for excercise ..in 6 months. My dog was estatic and I was too...this is all in my quest to get healthier (as I feel like an unhealthy slug) and get off extra estrogen producing pounds.

TeamKim

ck -- Good for you taking a walk -- I hope to walk daily throughout chemo, even if it is a short distance. Like you, I feel like a slug (even with the cute hats). I was thinking that same childbirth analogy about my other cancer treatments so far. I had a terrible experience with my first biopsy (stereotactic) and I remember that I nearly passed out on the table during the procedure. But I don't remember how it felt. Glad to know the chemo thing is like that too. My GYN, who had prostate cancer, told me his mantra through chemo and all was "it's not so bad." And he said he kept repeating that thought to himself and pretty soon that was genuinely what he felt. As someone who has delivered thousands of babies, he probably knows a lot about eliciting that amnesia!

magpie2009

hi Kim, i too will be starting this same chemo cocktail in a week on 10/14. I went with my girlfriend today to get a wig...they dont look too bad either....and i didnt tear up like i thought i would. I am scared..my 18 yr old son was diagnosed with leukemia 2 days after i was diagnosed. He is doing well and i know i am lucky too..stage 2, 2.5cm, darn positive sentinel node screwed everything up..How many treatments do you need? I have 1 every 3 wks for 6 cycles...than radiation..

TwoHobbies

Magpie sorry about your son. If I know moms I am betting that tears you up more than your own cancer. Not exactly the experience you want to share but I bet it will bring you closer.

Teamkim you do get used to the hair being gone after a bit. Glad you like your hats. I'm not much of a scarf girl but I look darn good in my cute knit hats now that it's gotten chillier in the evening.

Try not to worry about recurrence so much. Either way it is a waste of time and energy because you either worried about something that didn't happen or you made yourself miserable for some precious moments of your life, right? I think we should get busy and enjoy life but also attempt healthful things that might help and don't forgo your scheduled follow ups with the doc.

JenSF

Twohobbies, I love your comments about we cannot worry about reoccurrence so much....it is waste of time...I don't see chemo or even the whole surgery as out of control compare to the sudden of reoccur worries....they really hit any time any where..i m practicing to put myself back on track whenever any of those thoughts haunted me. Prayers really help. Talk or text to friends or families also help (just jot down some daily updates or say hello)......

Did 1st dental deep cleaning today. Broke the news to my dentist. He was very supportive. He said he had many patients who had similar needs. Will do 2nd cleaning next Wed. Just to get ready before chemo starts.

Wish everyone a beautiful peaceful Autumn weekend.

TeamKim

hi Magpie -

I start Oct 10, 4 infusions, three weeks apart. So I'll be a few days ahead of you -- I'm scared too, but starting to feel more calm as the day comes closer.

So sorry about your son -- I know as a mom that I would put worries about me on the back burner if my boy were sick. While this is not something either of you would sign up to share, you can help each other through it. My DH is also 18, and living on the other side of the country at his freshman year of college -- he has been a great help, picking me up with his positive attitude and belief in my strength.

((( hugs ))) Magpie -- will be rooting for no SEs on the 14th!

wrenn

I'm so sorry about your son Magpie, What a lot to deal with all at once. Take care of yourself. xo

KBeee

Magpie - I am so sorry that your family has been hit twice...and at the same time. Do remember that friends and family that offer to help do truly mean that, so if someone offers to bring you a meal, give them a date to do so or have them bring something frozen that you can bake when necessary. You and your son will get through this and will have a bond that probably no one else will be able to understand. I also am doing TC chemo, and doing 6 rounds (a lot of people just have 4). My first was September 20, and I found it to be very manageable. I have tried very hard to stay active, and make myself walk each day, whether I want to or not. I honestly think it helps me more mentally than physically, but I know it has helped me.

ckmoss and JeriGrace - Don't second guess yourself. If the answers to the choices we have with all of this were super clear and we deviated from them, then there's reason to second-guess, but there are no clear-cut choices here. We make the best decisions we have with the information we have at the time. Then plow forward...no regrets. ckmoss, I am glad you were able to get out for a walk. I put my music on and head out to walk every day. I just love getting "lost" in music and thoughts other than cancer on those walks! It's the best part of my day, and I feel so much better afterwards.

Chemo #2 will be this upcoming Friday. The week will go by fast because it is Fire Prevention Week, and I am the public education person for our FD and I organize a lot of events. That will keep me well occupied which is a good thing. Every week that passes is one week closer to the finish line. Cool weather has moved in. Though I am not a fan of winter (at all), I know I finish in winter, so bring it on!

ckmoss

Magpie=I am so sorry to hear about you and your son. You are both in my prayers.

TwoHobbes-You have the most awesome perspective! Dead on about groups at work! ..and you just made me stop short and think about recur. I hope you stay on boards for a long time, as you def the ability to put things in perspective and that is very helpful at a time when thats a quality that is easy to lose!

Jen-I did the same thing..whole 2 weeks before surgery, I lived at dentist office...I was like I don't want any issues from that! Had a wisdom tooth pulled and deep cleaning. My dentist and her staff were great! Did not even charge me..well they charged me..but said I had enough worries and could pay my out of pocket later. They also gave me fluoride toothpaste that is great.

I'm pretty much over the chemo fatigue (although I know it will hit again in a few days when my counts drop) but for now...just enjoying. Only issue I have is this 4th time has really given me horrible hot flashes. Very hard to sleep. I have the house like a freezer and my husband walks around bundled up..but wisely doesn't say a word! LOL. I'm looking forward to today. Our city is having their International Festival..it is always fun and has wonderful food!

I hope everyone has a great weekend

TwoHobbies

jenSF you are so right. Those fear moments hit by accident sometimes. I find it helps to come here or like you said, talk to friends about something other than cancer. I went to lunch with friends yesterday and I love those girls. We had such fun talking about the usual stuff of life. And music helps me a lot. I blast it in the car like I'm 17.

International festival sounds like so much fun. Wish I could go.

JeriG I'm pretty exhausted after returning to work. I might have to work from home one or two days a week when I try to do five. Or I might just take a vacation day here and there while the weather is nice. If it stays. I saw snow galore in SD and WY on the news and it seemed so foreign because it's been unusually pleasant here in Chicago.

bondsy

Thank you for all your tips! Yesterday, October 4, was my first chemo. I'm feeling well today so far. But had an issue with my chest port yesterday that made things kind of unpleasant. Apparently there was a "kink" in the catheter and the IV wouldn't drip. So they had to go through an arm vein. The whole reason I went through the painful insertion of the chest port was to avoid my veins because they collapse easily and are very hard to find. But the chemo nurse was very capable and went slow and it turned out fine. Now I have an appointment in the interventional radiology dept to either have the port replaced or just remove it entirely and take my chances with the veins. Any thoughts or experiences about that? I just can't decide. This time the veins were ok, but what about the next time? I have only three more infusions, but also the three blood draws, so six attempts at my veins might be too many.

KBeee

bondsy - I did not get a port and I am having 6 TC, but I have good veins, and told them they could use my legs if needed, and I added that if they could not find a vein, I would start the IV myself, since that's what I do at work each day. I do have very easy veins though.

wrenn

I have poor veins and in the past they were usually only able to find a decent vein in my left arm but now that I have the node dissection they have to use my right arm and each time I am amazed that they manage to find one. I am not having a port but trust that there are nurses out there (my oncologist said they were great at finding veins) who will do it with ease. I hope which ever way you decide to go that the rest of the sessions are easier for you. Hang in there.

TwoHobbies

Bondsy and wrenn I had. a horrible time with IVs after my first surgery but I did not get a port for four treatments and it was fine. All four of my chemo IVs were in my hand but I will add that two or three times the vein was good for chemo but they still had to draw labs from my elbow nook area. Elbow pit? What do they call that?

ckmoss

Bondsy-I have hard to find veins in my arm and throughout my surgeries and "bloodlettings" with this..my right hand/wrist and everywhere else has collapsed. I HATED when I got my port in..3 days of pain..worse than MX...I would not give anything for mine now. If it was me..and this is me and my situation..while they were in there fixing it..Id tell them to put it in right. I'm not sure how your oncologist does, but for me..though I am done with chemo..I will have to have blood draws every 6 mths for awhile. Also, I will be doing reconstruction surgery and they can use it then. My surgeon said that most leave it in 5 years and that is what I plan to do. Everyone is different, but, to me, the port has saved me MAJOR pain. The last surgery I had for seroma at MX site..they had to put IV in my pinkie knuckle (horribly painful). So I vote for port.

Melrosemelrose

I am now 14 months post final chemo and feel pretty good. As for the port, I had one and had to have one because of disappearing veins ( they would hide and bury themselves when they heard a nurse coming) and because of my receiving Herceptin through a clinical trial for a year. Although my port did not always cooperate and was at times finicky when it came to the infusion nurses trying to access it, I'm glad I had it. I had 6 rounds of chemo and I doubt my veins would have held up if I hadn't had the port. As for my blood draws, they were done either via the port or through my hand (whenever my port was not cooperating). I had my port removed about a month after I had final Herceptin. My BS who placed it when I had my UMX, removed my port. It was recommended to me to have it removed since it could always be a potential site for infection and I would need to go in every 3 weeks to have it flushed. Everyone is different and what each of us can withstand/tolerate is likewise different.

Wishing the best to all of you here. I know the road here is hard but each of you will find a way through all of this.

bondsy

Thank you to everyone for your advice on my chest port. I have a telephone conference with the interventional radiologist on Tuesday to discuss whether to remove it or replace it. I'll keep you posted how it turns out.

bikergirl

Bondsy-I went with a port. I have great veins, but, being a nurse, I know chemo can trash your veins. If you just have them use your veins, can't they draw your labs prior to starting your chemo?

Magpie-I can't even imagine what you are going through. I am sorry for you and your son's diagnosis. ((Hugs)).

bikergirl

Thanks Formy-My cancer was 2cm and by surgeon took out a couple extra nodes to be safe-but they were all negative. I am a nurse and research everything. Studies did show lumpectomy and rads were just as successful. The chemo was added to increase my odds to avoid a reoccurrence. Initially I wanted a bilateral MX, but both surgeons I consulted said it was not necessary.

TeamKim

My first infusion is Thursday afternoon at 3:00. Among all the other instructions, MO and onc nurse never gave me any guidance about what to eat that day. Normally i stop on the way to work for a mocha and a bran muffin -- should I keep to that routine, or forego the caffeine? I don't know whether to splurge on a nice big lunch of all my favorites since I am likely to not have much of an appetite for several days, OR should I stick to a light and bland meal in anticipation of the afternoon "cocktail?" Thoughts anyone?

indenial

TeamKim, I found the anxiety & anticipation of chemo prevented me from eating much the morning of. And the steroids I started taking the night before gave me acid reflux issues. So I just had a small meal beforehand. But really you can do whatever you want. I have not heard of any problem with caffeine, except that you want to make sure to stay hydrated (and I believe caffeine is dehydrating) so you may want to drink extra water along with your mocha.

Mellie289

So, some neuropathy kicked in this weekend that put me into a bit of a chemo crisis.

I've done 4 TC cycles now. I'm thinking, so many people only do 4 - isn't that enough? I don't want worse neuropathy! I never had a discussion with my MO about 4 versus 6 cycles - she just said 6.

Part of me wants to stop, but part of me wants to be aggressive about making sure I don't have a recurrence. I wish there was some data out there about 4 versus 6 TC cycles! I can take all the SEs in a cycle, but I've just recently been reading about permanent neuropathy. That was never said to me in discussions about my treatment. I feel like I need some answers! Who gets severe PN? Is it something that can happen in treatments 5 and 6 or is that something seen in people who suffer some PN right from the first cycles? I need to know that going forward isn't overtreatment because 4 cycles is enough and I'm not risking permanent PN.

I'm not sure if I should be going to my MO about this now or waiting until next Wednesday when I meet with her before my next treatment. I had not problem with doing 6 cycles until this weekend when I began to have problems with my left hand.

brown471

Good question about PN Mellie, I would like to know too as I just did my 3rd cycle and have intermittent burning type pain in my hands and feet.

Also wondering if anyone has had any tachycardia? Infusion was on Friday and my heart has been pounding since yesterday.

batcatlady19

TeamKim - my first 2 infusions have been at 11am, so I ate my normal breakfast with a cup of coffee & felt fine. My dr. didn't say to do anything different, tho did recommend taking an Ativan before coming in, more to calm me down bec. I hate needles & don't have a port. It all went fine.

I'm also not prone to nausea or motion sickness, so eating in general hasn't been a problem for me -- if you are a person who gets car sick or seasick or had morning sickness while pregnant, you may be more likely to get nauseous from chemo, so you might want to be more careful of what you eat right away.

Good luck! I go in on Thursday too.

TwoHobbies

Mellie I have some numbness after my fourth and the doctor said this should go away but it may take months. I was only set for four so I am done anyway. She said I could try some B6. Im unclear when they decide to stop due to neuropathy. I would probably talk to the dr now in case there is some decision to think about on your part.

I found this website the other day for breast cancer treatment protocols. I only see recommendation for four TC unless I missed it.

http://emedicine.medscape.com/article/2006464-overview#aw2aab6b5

Brown I did have rapid heartbeat for a couple of days. My MO did not seem alarmed and it went away but I would mention it just in case.

Kim I would probably go light on the caffeine and a regular size meal until you see how the chemo affects you.

JenSF

Hi Mellie,

My MO explained 4 Rounds is usually standard. She will suggest 6 if lymph nodes are positive. I have similar concern and I cleared from my MO. She said I can do 4 and I asked if that's enough! (Crazy, isn't it)

Jen

KBeee

Mellie, I am scheduled for 6, instead of 4, and I had no lymph node involvement. It is on my list of questions this week to address. I will not push the issue too hard now, but if I do start developing neuropathy, we will revisit the discussion.

It is the busiest week of the year for me at work, and I am organizing a big event at work, which is Wednesday night. I worked on it about 6 hours yesterday, will be there about 8 hours today, and after my Wednesday doctor's appointment, I will be there 10-12 hours that day. It is nice to be there for the hours and it should make the week go fast. I'll hopefully sleep well too! Hubby is out of town, so it is a big of an exhausting week. It concludes with chemo number 2 on Friday. Looking forward to being 1/3 done...it seems so much further than 1/6!!!

Mellie289

Since I do have lymph node involvement, I'm sure that's why I'm down for 6 instead of 4 treatments. TwoHobbies - as far as I can find, there is only one clinical trial published with TC and it's only with 4 cycles. I think the 6 cycles is just extrapolated from other trials with TAC or AC for comparison.

My PN seems to have resolved for now, so I'm back on track mentally for the next cycle. I'll report this to the onc, but I'm not sure if I need to do this now or if I should wait until I see her right before my infusion next week - I think she should be able to make adjustments in the taxotere dosage or possibly infusion rate if needed without prior notice.

I plan on getting some vitamin B6 later today to start taking that on top of the multivitamin/B-complex I'm already taking. L-glutamine has been ordered from Amazon and should be arriving today or tomorrow, so I'm going to give that a shot too.

brown - I've had a few days soon after chemo that I've felt my heartbeat way up. For me, it was like any mild exertion like standing up, bending over, etc. was sufficient to get my heart rate up like I might have done before with a run on the treadmill. It settled down after a few days, but I'm easily winded and my heart rate does get up more easily still now that chemo has put me really out of shape.

TeamKim - you can eat what you like, but keep in mind that chemo and the pre-meds are going to slow down your digestive system so you'll probably want to keep things light to fight the constipation (unless you're one of the people who goes the other way in response to the treatment). I ate normally my first cycle but cut my calories way down for cycles 2 and 3 and it made such a difference those first few days, but I was still a little to quick to get back to comfort food (meaning low fiber!) while I was still popping Zofran (also constipating).