Cytoxan Taxotere Chemo Ladies- February/March 2013
Comments
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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.0 -
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!0 -
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..0
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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.0 -
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.0 -
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!0 -
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!0 -
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 weekend0 -
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.0 -
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.0 -
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.0 -
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?0 -
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.0 -
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.0 -
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.0 -
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)).0 -
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.0 -
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?0 -
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.0 -
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.0 -
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.0 -
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.0 -
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.0 -
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)
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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!!!0 -
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).0 -
Thanks Mellie (and everyone) for the food suggestions. I am going to keep it light and push lots of fluids and hope for the best. The support and info you have all offered so freely has made me feel much calmer going into this -- but I still think I will enjoy an Adivan with that pre-chemo lunch! So glad I found my way to this thread. I feel very prepared, thanks to all of you!!!0 -
Brown-I, also, have had the rapid heartbeat. It started after my 4th (last) chemo and went on for 3-4 days. I would do deep breathing exercises and it would go away for awhile. Aggravation.
In ref to 4 or 6 treatments. I had 2 lymphs positive and was given 4. My onc said that it had to do with how slow/fast growing the tumor was. I've also looked at other peoples dx and how many treatments (I was concerned I wasn't getting enough)..and really can't find a lot of rhyme and reason to it. I think every onc is different and that plays in to it. I know how much of a dose you are given is determined by your height/weight. My nurse said that is why they won't mix until you get there, as they would have to throw it away as that mix is for you specifically and, according to the "This is not a bill" statement I get from insurance..one treatment is over 100,000.00.
I took an ativan when I would get home from treatment as can not stand the jitters you get from steroids. They worked well. And, though I ate smaller meals..really didn't limit what I ate. I can tell you that even in between chemo..the chemo changed the taste of some food. Sausage and steak...absolutely foul. They don't taste anything like what they are suppose to. Not sure if its still like that,...but scared to try. Also, my mom made..for the first time..a homemade chicken pot pie for the day one of the chemos SE hit..and it was good then..but since, she has asked did I want it again and the thought turns my stomach..I associate it with chemo (I guess that's because its the only time I had that).
Have any of you gotten the bionic nose yet? Smells were incredibly strong to me. This is not always a good thing.
Well, we are getting ready to head to the beach this weekend. Honestly, still having hard time believing its over. I went for 6 mth mammogram on remaining breast yesterday and got HUGE unpleasant flashback ..as that was where all this hell started. I haven't been in there since diagnosis. She did the reg mammogram and then put me in the private waiting room while radiologist looked over. She said if he saw anything that needed to be looked at she would come get me for ultrasound..which is what happened before. I thought to myself ..if they find something in this one..after all I've been through the past 6 mths..Im going to jump off this bldg!!. All was good though. He even came out and congratulated me on getting through..so that was nice. I, also, had CT scan to make sure all the cancer is gone..won't know the answer to that until after I get back from the beach..which suits me..same bldg jump response if have to have more chemo..lol.0 -
I went in today to get my chest port fixed, and the surgeon was able to get the "kink" out of the catheter line easily. Hopefully this will work and I'll have no more problems with it! Time will tell.
I am on day 6 of my first chemo cycle and I feel pretty good today. I've had many of the food-related side effects that I've been reading about here, like one day loving a food and the next day not being able to eat it. Also, the smell of food cooking is not tolerable at all. The only thing I've consistently been able to eat is homemade vegetable soup, which fortunately is healthy and I can live on.
I feel so badly for those of you who have to try to work during chemo, and also for those who are dealing with the huge costs of medical bills. I'm a kindergarten teacher, so I'm off work for the entire time that I'm doing chemo because there are just too many germs in a K classroom, plus for me it's just too rigorous. I'm using sick leave until it runs out, then our teacher union gives out 40 days of catastrophic sick leave to members in need. If that runs out, then teachers can donate some of their sick leave to me which I hear several teachers have already done for me. As for the medical bills, I have Kaiser so my co-pay is fairly low (the Neupogen/Neulasta is $25 per cycle, the anti-nausea pills are $10 per every two cycles, chemo has no co-pay, doctor visits have $25 co-pay, etc.) It's nice to know exactly how much I'm responsible for and I can plan for it. Now that I look back on it, becoming a teacher was one of the best decisions I have made in my life because even though it's not the best paying job, the benefits now are really paying off. But again, I feel for all of you who don't have such a fortunate situation, and am praying for things to get easier for you.0 -
just checking in ladies to say Disneyland Paris has been great - although will be very happy to leave ....4 days is PLENTY !!!!
25 days post final chemo We 'did' paris in 16hrs = arc de T, Notre dame, trocadero, versailles for 5 hrs ( including both Trianons, queens village, and the chateaux ( had the push bikes for 3 hrs). Met up with friends for a meal and went up Eiffel Tower at 10pm Got home past midnight - admittedly some attractions were very brief photo opportunities but I outlasted my 2 teenage companions at Versailles !!!
Needless to say I virtually crawled into my hotel room after sooooo much walking - 2 days later not sure my heels and calf muscles have recovered yet !!!
We return to London today and were supposed to do 2 days of sightseeing for DD. Seriously not sure I can face that at present !!
Bondsy - good to hear you travelled ok for chemo 1 .... Chicken soup was my lifesaver days 4/5. Stay strong0