Starting Chemo February 2013
Comments
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Positive thinking: Dont rule out going to all meetings. You get some new and old people rotating in and they are from all stages of treatment. With so many new clinical studies going on, its good to hear whats been working out the best for most and hear whats new with new modern technology. You can ask the group a question and they will interact.
There were some negative nellies in my very first one but the second one was different. You can ask questions about chemo and radiation and get some tips on how to cope. My last meeting they had a lady who specializes in permanent make up and does the nipple & aerola. She passed out a brochure and some other flyers to read including pictures of before and after. Next week we will have a speaker to talk to us about lymphodema. I actually met 2 ladies that I would like to exchange phone numbers with and meet on our own time to talk about or thoughts and fears. It turned out that as we spoke in private we all have the same breast & plastic surgeons.
I was having a lil vision issue and went back to see my eye dr to check it out, Even though I saw her in November, my eyes had changed (for the worse). So I got a new presecription to adjust to the small change. Will see if it goes back to the previous vision RX when this is all over
Tomorrow if the big day chemo#3.Im going to ask for some pain med for the bone aches & headaches. Anybody take anything better than advil/tylenol or aleve?
I'll post again in a day or 2
Stay strong Sisters!
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McKatherine- If you feeling the hot flashes, welcome to "chemopause". My warm moments began after a few rounds of chemo. I finished chemo August 7, 2012 and have continued my Herceptin infusions. My hot flashes are still here and now my onco believes that the most recent blood test shows that I'm in menopause. I do remember opening the freezer door to cool myself off a few times when I wanted some instant relief!!!
Wishing everyone an easy time in the chemo lounge this week and minimal side effects.
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Round # 2 of TCH was yesterday. I'll get the Neulasta today. last time I was a mess, but thye're cutting it n half and I'm ready with the pain killers so will see how it goes. Just was invited to a Bar Mitzvah in May. I haven't told many people. I guess it will be the real test of my wig. I also am not sure I can handle a full day with people. My Onco told me after chemo I'll have a daily rsdaiton for 6 weeks. I hope no se with that.
Wishing everyone good luck
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Shasha I asked my Oncologist about a lower dose of that shot and she said it only comes in one dose. I told her on this message board some are getting a lower dose and she said impossible it only comes in one. Now I feel like is she not up on stuff or am I being lied too?? I am confused....... I too have to have radiation. Gee I thought I was the only one. Everyone I ask says nope they didnt have to. I will have these HORRIBLE Tissue expander's out first a few weeks after the last chemo then heal up a bit then start radiation. I have heard mixed SE to that. Some say none at all, some say tired and some say very bad skin reaction. I am hoping the worst is behind me I pray for that everyday!!! I go for Chemo # 3 in 3 days. It will feel good to say half way done. I am taking advantage of feeling good this week and getting out of the house for an hour or two each day as I know I will be on the couch all week next week!!!
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Heading to the bar in the morning for #3. Can I just tell you that with the last tx & with this one I feel like I just can't wait to get there to get it? And I was a freakin bsll of nerves that was on fire for the first one! It's not that I love how I'm going to feel this weekend but that in the beginning it felt like getting six tx spread out once every three weeks was going to take FOREVER! Now, here it is, half way done!!!! It feels like it went by so quickly! I know you are probably all thinking that I boarded the crazy train at this point but getting this part over with just can't happen soon enough. I still have to do rads afterwards though, can't be as bad as the chemo, right?
Hoping everyone saddling up this week has a smooth ride! -
tangles I just got a shot that was 4 mg and it was labeled that way like an rx. I wonder if your dr orders out in full shots and maybe some have it in bulk. But I'm living proof you can get it in a smaller dose. I ordered my baseball cap with built in hair today for $95 cant get here soon enough
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I googled the shot and read up on it and the web site says it only comes in a premeasured 6mg dosage. I will have to do some more research........
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tangles - my onco told me they couldn't reduce the amount of neulasta either..it only comes in one dose size...I just looked up the Neulasta site and it specifically states -
Dosage Form and Strength
6 milligrams per 0.6 milliliters in single use prefilled syringe.1
Could it be when you get less than 6 mg you aren't getting a shot of neulasta? depending on your insurance they have other similiar products you may be getting..I just can't remember the name but it also starts with an N...maybe it comes in lesser doses?
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I too get to look forward to 33 treatments (6 1/2 weeks) of radiation after 6 rounds of chemo. The entire summer will be spent indoors during the peak hours...no tans this year ladies. Pasty white all the way through. Can't wait until next year! I am ready to close this one out already.
LisaMM: congrats on being half way through! I am sure that is a great feeling! -
Oh yes, I have to do 6 weeks of radiation too... I think I should be finished by July = or maybe thats wishful thinking - will that mean no beach days for me? I really haven't read to much about radiation and se.. figured just get through chemo...one thing at a time.
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From what I've read, both chemo and radiation will effect how your body responds to UV rays. It is recommended that anyone on chemo stay out of direct sun and keep covered from 10-3 each day. Even if you are finishing up or finished with chemo you are supposed to avoid for a month, possibly 2. I can't remember which it is now. Stinks, huh?
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LW122713 - oh no... staying out of the sun during summer? you are right, that does stink!
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LW122713-Thank you! It does make me happy!
I've planned a beach trip the first week of June-I guess it's a good thing I'm used to being a sunscreen nazi! It's still going to be hard for me though because I love being out in the sun all Summer. If my chemo stays on schedule, it will be done 2 weeks before my vaca & i'll start rads the week after. -
Ill have 6 weeks of rads also,but surgery first. Going to be a fun summer, oh well it will be worth it to put this behind me.
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Lisamm
I am right on that crazy train with you. I am on chemo 3 and today was the best day I have had since Dec 18 2012 (my day I found out I had bc)
With chemo 3 it just seems like I am no longer waiting but moving along in this crazy ride.
Tangles - With my first chemo I had a 6 mg neulasta which brought me to my knees
The second chemo the MO felt like a 3 mg would be fine, which I believe I got because the bone pain was nothing with my second chemo and my blood levels were fine
Why wouldn't it be possible for the nurse to only inject half the syringe instead the full size syringe. -
I just pulled out the handout they gave me with the shot and there is a generic (which I had) called Pegfilgrastim;trade name neulasta Has anyone been told about a 4 weeks rads regimen? both my surgeon and the RO have mentioned it.
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Good luck everyone getting chemo tomorrow . I'm up in Thursday and really nervous about it. Can't wait to be done and on to rads. I didn't know about staying out of the sun. I'm a sun goddess but its probably not a good idea anyways. I heard that people diagnosed with breast cancer are more likely to get skin cancer.
Gina -
Everyone:
Had my chemo #3 this afternon, which also puts me at my half way point for chemo. So far I'm just tired. Getting the Nuelsta shot tomorrow. I Will keep you posted in a few days as my se start up. I did get an RX for Norco (tylenol & vicodin) today to use for bone pain this time around. Since I had a rough time with the pain in my hips and thighs on #1 and then my knees and lower legs on #2. I have no idea what to expect for this time around.
I havent had any issues with my fills for the TE. But the side boob look is awkward. I will be going with silicone for sure and my PS recos the round shape.
Anybody have any issues with going thru the aiport with a port & the TE's? I would hate to cause a scene during the xray checkpoint.
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Speaking of going through the airport, I was given a referral to Lymphadema Clinic after my surgery. I didn't quite understand that since I only had a lumpectomy and one sentinel node taken. According to the PT who saw me and took measurements, rads and chemo increase your risk of lymphedema. She educated me on what to watch out for and I am to return to the clinic 6 weeks after rads for a check up. I was also fitted for a compression sleeve for my surgery arm that I am to put on 2 hours before flying and take off 2 hours after flying. The rationale is that the lower cabin pressure on airlines could possible trigger lymphedema. Since I fly a lot for work, I intend to be religious about that and it does make sense to me from my flight nurse training, although I am aware that there is some differing opinions about the necessity of it.
Was anyone else referred to a Lymphedema Clinic for education and prevention as part of their cancer care program?
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Happy First day of spring everyone. Its 12 deg where I am at so feels very much like winter. I dont care how cold it is I am getting out of the house today. Tomorrow will be my last feel good day as I have round#3 Friday then I will be down for 7 to 10 days!!
Nancy I am with you. I am not thinking too much about the SE of the RADs until I am done with this Chemo and my implant swap out. I think I am looking forward to that surgery more then anything as my TE hurt daily. Sure I am sick for a week or more after chemo and deal with the bone pain, but the TE pain never goes away. Maybe its my thin skin?
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TMM60- I hope that your PT also recommended that you also purchase a hand gauntlet or glove to wear in addition to your compression sleeve when flying. One needs to wear both since just wearing the sleeve alone can cause LE. If you want more info about LE, the BCO LE thread is a great place to get some practical information and advice and also the Stepup Speakout website is also an excellant place to get info ( http://www.stepup-speakout.org/ ). I wear my compression sleeve and gauntlet an hour before I fly, during the airplane flight and then for an additional hour after landing. I use a pair of dishwashing gloves to help smooth the compression sleeve when I'm putting it on. I also carry disposable gloves with me to cover my gauntlet hand when I use the restroom since it is isn't easy washing your hands with the gauntlet/glove on. You are very fortunate that you were given an LE referral after surgery. I asked my BS some advice about getting an LE compression sleeve and hand gauntlet only because I was going on a airplane trip this past October 2012. I did not develop LE after my SNB/UMX last March 2012. He told me that he didn't think I would develop LE and didn't think I needed the LE gear but at the same time, he said I could get the gear and it wouldn't hurt to be cautious. I paid for the LE gear out of pocket but I figured it was worth the amount of money I spent so I could help avoid a lifetime of LE. Some of my other BCO gal pals have also recommended that one wear compression sleeves/gauntlets when travelling by car in higher elevations (mountains). In addition, some of them developed the LE several months after their SNB and after they had completed chemo and radiation. Thanks for reminding everyone here about LE.
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LE is a particular risk for those undergoing rads--I did not develop LE post surgery or chemo, but rads finally triggered it. Well, actually, wearing a preventive gauntlet triggered it--I got a sleeve and gauntlet for rads, as I was a bit concerned, and the double pressure at the wrist trapped fluid in my hand, and I've had trouble ever since. I suspect it would have happened at some point any way, but nonetheless, if you are having rads, it's a good idea to have a LE consult prior to doing so.
Tangles, are you swapping your TEs out for implants prior to rads? I'm envious. My PS wouldn't let me do that, and then you have to wait six months afterwards for healing before you can do an exchange. And then I had the other side done in Dec., so I will have had my left side TE a year and a half before it finally gets swapped out. I definitely notice a difference between my radiated side and the non-rads side. The rads side is higher, and not as squishy feeling, if that makes any sense. Its because of scarring and damage to the radiated tissue, I think.
Good luck to everybody with treatment today and the rest of the week!
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I asked about damage to the implants and he said if that happens down the road we will just deal with a revision. I dont know what I would do if I had to keep these TE in for a year. I HATE them so so much. I have 2 friends that said they were no big deal. I dont know why mine hurt so bad. Maybe they are to big for my body I dont know but they kill me everyday so I am so so happy he will swap them out before RAD!
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Tangles/IamNancy -
The other drug you are referring to is Neupogen. Neupogen comes in different dosages. Neulasta and Neupogen have the same mechanism of action and are made by the same company.
On wigs - I preemptively had my husband take the clippers and sheared everything off. The hair is massively falling out now. Its like I shaved in the shower with all the short hairs. But it was much less traumatic than seeing my very long hair fall out! The "work wig" is short and everyone just said they loved my new haircut. Its a monofilament wig so it looks like you have a part and can see scalp line. I paid $269 for it and its worth every penny. Super comfy and I forget its on. Even the nurses at the dr. office said they've seen a lot of wigs and mine was hard to tell if I just cut my hair or if it was a wig. I did get it to match same natural hair color. At home I don't wear a wig or I wear the long one my husband picked out for me when I get tired of walking around bald. I found if I do my makeup I feel more "normal".
Fatigue - My MO says its cumulative. I have chemo on Thurs., Neulasta on Friday. Next 5 days are hard. Then I start to feel better. Same with round 2 however I was hospitalized with a fever and spent the past 3 days with antibiotics. The first weekend with the neulasta is the flu-like and it gets better from there. This round the SE were minimal and I am looking forward to getting through round 3 so I can say 1/2 way done!
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I have round 3 tomorrrow. Cant wait to say I am half way done. I may ask tomorrow about the diffference in those shots and if they think I could try the other one. I dont want to go without it though as I did the first Chemo. Being in the hospital for 10 days was the WORST! I am hoping SE next week wont be worse then last two. I hear they get worse as they go and I have also heard they dont so I guess each person is different. For me #2 SE were worse but with #1 I did not have the shot........
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Tangles - let us know how it goes. For me SE on round 2 were less and I had the shot both times. A lot less bone pain with the second shot. 10 days must have been hell. I was climbing the walls at day 2.
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I'm having round #4 of AC right now. My MO predicts Taxol will be easier (will be doing 4 rounds of that as well). First two rounds were fairly similar, with the second perhaps being a bit better than the first. However, round #3 really knocked me flat and it took much longer to bounce back.
I picked up my lymphedema sleeve and glove, as well as breast prosthesis, last night. Feels good to wear a proper bra again. So far, no problems with lymphedema. -
I completed #4 AC on Tuesday and will be starting Taxol in two weeks, Ugh for 4 rounds then three weeks off and then radiation I believe for approximately 5 weeks.
I developed lymphedema 4 weeks post surgery and I have a sleeve to wear when exercising, lifting, etc. I have been going through physical therapy for the lymphedema/stretching issues.
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Tangles: you and I seem to be more adversely affected by the Nuelasta shot and I hate it, but, it does work. My counts have been through the roof in a good way. I have not been sick at all. So even though it is a crappy thing to have to do, it is worth it, especially after your hospitalization. My MO says I won't need it during Taxol so here's hoping! I had AC #4 yesterday (wednesday) and my shot today (Thursday.) I do feel more tired this time but I will take that. I am hoping the rest of the SE's are no worse. Hang in there. We will make this!!!!
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I got another UTI -had to go back to the doctor today and now they are doing a urine culture to make sure I am on the correct antibiotic...I am on my third different antibiotic since starting these chemo treatments..
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