March 2012 chemo
Comments
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Oh and brax I forgot to mention that the Oncotype DX score is only applicable for some situations. You can look them up online and they have a clear explanation of when it can be done accurately. My MO said I would get a false high score so we skipped it. Once I knew it was in my lymphovascular system and I had a huge met to my sentinel node I knew I would do chemo anyway.
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Thanks for all the contacts advice. I so wish I had thought to go to the eye dr this week in between my other appt - too late now, I am chock full of appts tomorrow and then chemo starts Monday.
I guess I can still go once I see how I am going to feel on the chemo. Think I am definitely going to stick with the glasses though...could just use some newer/cuter frames. My mom suffers from the dry eye/mouth combo with her Sjogren's Syndrome and she said if my eyes do anything like hers, I won't have any desire to put contacts in!
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Quick question. Claritin or Claritin D or does it matter? I took Claritin but will switch to Claritin D if necessary. First treatment tomorrow.
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Masserz - {{{{Big Hugs}}} Hope it went ok today?
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I am really feeling blessed with my ONC. At my first appt he asked what kind of person I was as far as wanting info. He said he could be straight up/ black and white an tell me everything or if I choose he could stay in the gray and tell me as little as I wanted. Of course I am like a sponge and want it all. He has been great! He also has what he calls supper time hours. Patients can call and talk directly to him between the hrs of 7-9:30 every night. He doesn't care what the question is. All ONC should have hrs like this. Maybe yall should drop hints to yours!! Anyone in NC let me know if you are looking for an ONC. I have a great one!!
I had another physical therapy appt today. They did laser therapy on one side for pain and healing, Never had this done before and never heard of it. Anyone else had it?? -
Contacts
I finished my second round of AC today and haven't had any problems with my contacts. I just need to add an eye drop or two to rewet them in the morning. My situation could be different though because I have the type you wear for a month and never take out.
Constipation
I found my constipation to be worse after my double mastectomy and those pain meds than with chemo so far. I did make sure to take a colace twice a day and that seemed to help things along.
Side Effects
So far I've only had 2 chemo treatments but my only noticeable side effect has been a dull headache. I definitely enjoy my naps and for the first few days my appetite isn't great but so far I feel lucky. I'm still waiting for my hair to fall out. I wish that would just hurry up and happen. For those of you starting soon I wish you minimal side effects! Hope everybody had a good day!
Stephani
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Georgia - I've always heard Claritin D.
Steph - how fantastic for you that your SEs have been minimal! I hope it will continue that way for you.
Msbelle - although I like my MO, I wish he had supper time hours! I'm so glad you found a good one.
Masserz - how are you doing tonight?
How are all the other Marchers?
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Georgia - forgot to say good luck tomorrow! I hope your tx is easy and your SEs minimal.
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It's so nice to have some info and tips from all of you that already started treatment this month, and it comforting that some of you are starting on the 13th with me! I'm seeing a lot of talk about Claritin-D. Should I be taking it? Is it supposed to help with a SE? Is there anything I should get in anticipation of next week? I see that I'll probably need to get something for constipation AND some Imodium. Any other tips?
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nsmolen - women have found that Claritin D helps with the bone pain that you experience after getting a Neulasta shot the day after chemo. Not everyone experiences bone pain but I'm not going to take a chance - I'm getting Claritin D. Your chemo regimen is the same as mine and we're starting the same day. Do you know whether A/C generally causes constipation or diarrhea? Some have said to take something before treatment but I don't know which one to take.
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georgia- i was told claritin -NOT D
nsmolen; many of us take claritin if we are getting neulasta shot- it seems to really help avoid te bone pain after the shot-i take one starting the night of chemo and contimue for 7 days--i am not a doctor!
constipation- i am on AC- 1st tx i drank and drank and drank more- ate prunes and still got just a teensy constipated...2nd tx have been putting raisins in my yogurt and eating rye bread sandwiches (don't ask my why i think it helps!) anyhow- movements have been much nicer! and i don't feel that i have been as gassy this time...
glasses/contacts: i wear glasses -bifocals actually...i also have dry macular degeneration started and some cataract starting- yea- i'm falling apart! anyhow- my eyes seem a bit dry but i haven't used the tears yet--tho i get wet in the corners and sometimes teary...make any sense???? i do notice thatreading seems blurrier sometimes and my pupils don't seem to change much right now...becuz of the mac deg i have to wear sunglasses over my glasses outside...why am i telling any of this? i guess that our eyes are susceptible to changes from these wonderful things injected into our bodies!
about the phone calls not getting returned- my gosh--how ARE we to know what is important and what is not! CALL AND CALL AGAIN!!!! if they are not returning calls-raise hell! they are the professionals and are being paid for this--if you keel over dead becuz they didn't return a call...well..nuff said i hope...
yes! i AM woman hear me ROAR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
ok my dog just came to get me to slink back to the recliner under the blankie with her!
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KatyCB - I am in Calgary.
I got my eyebrows tatoo'd today. I highly recommend it! Expensive but the alternative makes it so worth it. -
Hi everyone, I've been reading but not writing since I got diagnosed in January but having just finished the first round of A/C today, I decided I wanted to feel more apart of this community or at least my circumstances have given me a greater sense of belonging. All went well today as far as I know. I'm not nauseous, at least not yet but after an initial boost in energy that allowed me to walk through the park on this amazingly warm day, now I feel wiped out. So much to remember with all the meds and mouthwash etc. I just want to let you know that I'd like to be a positive part of our collective healing.
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Hi i am starting on Thursday 15th with Fluorourcil, Epirubicin and cyclophosphamide. I will have
six rounds of that and then radiation for about six weeks. I am on antibiotics at the moment as my breast is bit hard and red.
I have noticed that the arm my limpnodes were taken out of it a bit sore.
I am a teacher as well but will not be working as three and four years are great germ carriers
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Today was fun, removed Mirana IUD to prepare for chemo,
after seeing Gen Surgeon for port check.
I am getting far too comfortable with people seeing my bits and
pieces. By the time this is through I
will be ready for the nudist colonies.
Sorry, again bit of a long day.Galena_79- Hope you
are wrong about your brother, but either way you take care of yourself and try
not to worry about his motives.
Honestly, if he was just coming for a vacation he would have to be a
pretty big dink and not worth worrying about anyway. Maybe I am naïve but I imagine he is
concerned, men are hard to understand
sometimes.Yeap my boob hurts. I
feel like the elephant woman. Well at
least on one side, the other is more borg since the port (yes I am a nerd, that
is a star trek reference). I imagine
that is why the chemo first. It seems my
General Surgeon is optimistic it might shrink enough to save part of my
breast. My oncologist says chemo first
is best but he would be surprised of anything less than a full mastectomy. My GS responds that is pessimistic. My OBGYN whom I have known and trusted for a
long time (he is like Mr. Miagee from karate kids to me) says I should have a bilateral,
be done with it and not have to worry the rest of my life. He even called my GS and told him so. Kinda funny to imagine that conversation,
when I mentioned bi-lateral my GS was unimpressed, said that that would be a
bit extreme. All in all I guess I have
some research to do.Shera- Haven't
seen a post since you said you were in hospital. Are you okay?Kokonut- When do
you expect the results of you MRI? Waiting
is the worst. My Mammo was normal too,
10 days of a nasty antibiotic for infection, then told probably fatty tissue degeneration
due to breast trama. But should do
biopsy anyway, oh well. I will keep you
in my thoughts for a good (and quick) response on MRI.Good wishes to all, maybe we can all meet at one of the ta
tas reunions someday!Corky
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Funny, I cut and pasted from word and my above post looks kinda like a poem. Cool.
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Welcome Hills
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Hi Marchers. I am another alum from the 2011 Chemo Lounge. I started chemo last year on March 17, afteer a lumpectomy in Feb. I was on a clinical trial of DD (dose dense) Taxol Cytoxan, 6 treatments every two weeks, then 33 radiation treatments. I am triple negative, so no further treatment available to me. I had a power port and was so glad I had it.
I am an elem/middle school counselor and I worked all through treatment. I had chemo on Thursday all day, worked Friday ( steroids- felt good usually!) and got Neulasta shot. Felt bad from Neulasta pain Sat/Sun. Sometimes I worked on Monday, usually just 1/2 day. Then back FT til next round two weeks later. It was hard sometimes but wasn't sure I could be home either. Was afraid I'd sit around and scare myself!!
I took Claritin AND Aleve the day before, the day of, and the day after Neulasta. I did not find it beneficial, but many more did. Really no harm in trying it. Constipation is a real concern; I had two "episodes" where I was afraid I'd need to go to the hospital. I took Senacot S the day before chemo , the day of and after. Sometimes I'd get rebound diarrhea but that was much easier to treat than constipation. Also ate prunes, dried apricots and used zfibercon. Start slowly though!!
One thing I did was keep a small notebook that became my daily journal. I wrote down what meds I took and when, because I would forget (chemo brain is real and comes on fairly quickly, besides being tired). I took my temp daily, sometimes twice a day. I often had a low-grade temp days 3-4. A temp of 101.5 or higher requires a call to doc, so don't wait, especially on the weekend. Your white blood counts WBC can drop rather quickly. I would keep track of SE's like constipation, diarrhea, headaches, appetite, etc. it made it so much easier to tell the nurses what happened between chemo visits. Taxol created fairly severe neuropathy for me-tingling/numbness in hands/feet, enough so that my chemo dosage had to be adjusted twice.
Whoever is near Tampa, I have a friend that volunteers at Moffitt-PM me if you'd like contact info for someone who has been through the BC process and ows the system- she's great!
I got on Ambien right away because I had soooo much trouble sleeping and eventually added Ativan too. Was one of the best things I did. Do not hesitate to ask for help and do not worry that you should be able to handle it. Anti-depressants are also very common for BC patients. Sometimes oncs won't prescribe; they may want those meds monitored by your PCP (primary care physician)
Ok, that's enough advice for one posting. This site and the March chemo thread in particular was such a help to me(that, and my Ambien!)
Kristy, aka Huskerkkc -
Hi everyone, thanks for your concern and well wishes! Today went really well! There were no issues with the infusions and the port was awesome. So glad I did that. So far my limbs just feel like sacks of wet sand, but I think some of that is due to all the fluids from the infusions. Taxotere does cause water retention though so I hope this isn't a sign of worse to come. Have my compression socks on and will elevate my feet and my ALND arm tonight. My stomach feels a little bloated and the weird one is...I keep burping! It's not pleasant! That started during the cytoxin infusion. Did anyone else have that?
Msbelle- your MO sounds amazing! You are right, they should all do that. Mine isn't quite that accessible, but so far I haven't had any issues getting responses. I'm intrigued by the laser therapy you mentioned. I see PT in my future. I'm not thrilled with my stiff shoulders. What did they tell you was the purpose?
Love74- congrats on the eye brows. That's great you are happy with them. I thought about it after you mentioned it, but I think I'm too chicken. My eyebrows are super light (lighter than the rest of my hair!) and I'm afraid they will grow back in different and then the tattooing wont work anymore. I am thinking about doing it after they are back though..just because it sounds way less maintenance than eyebrow pencil. The woman who will do my areola tattoo also does eyebrows, so I may see if I can work a deal. : ). Oh and I did sign up for the look good feel better session...thanks for encouraging me, I'm looking forward to it!
Welcome to more new friends! Our band of merry sisters keeps growing!
Cmclean-you were cracking me up with your reference to bits and pieces. I'm sure we all feel that way at this point. It's like being pregnant...your body becomes something less personal. I saw in another thread someone posted that she was going to start demanding marti gras beads everytime her doctors told her to lift her shirt to check her progress. I had told my DH about that and at my last appointment when the doc said to lift it for a check, we both burst into hysterical laughter. I'm sure she thought we had lost our minds. : ). Good thing she has a sense of humor. As far as the debate over your surgery options...be sure the decision is one you are happy with since you are the one who has to live with it, not your doctors. I don't think it's an easy decision for anyone, but it's critical you do what is right for you. One thing that went into my decision to go BMX was the ultimate cosmetic outcome as well. Your boobs are going to change with time so I wanted mine to be consistent. Just a thought...may not be important to anyone else.
Well, I'm going to put the feet up and get a little rest in prep for day two tomorrow. I hope everyone has a good night! -
Lisaj - I was told Claritin not D, as one of the SE of D is heart issues , which we already have enough contributing to that. AC will give constipation.
Cmcclean- why did they remove your IUD? I have the para guard IUD and my onc was actually very happy because of my ER status. Will they give you another form of birth control? Just curious as to the thinking of these oncs.
Masserz glad everything went well for you.
Welcome all the newbies lots of hugs and minimal SEs to all!!! -
Masserz: the therapist said the laser therapy would help with pain and promote healing. So far I feel good and not as uncomfortable as usual. I am a nurse and work with a lot of therapist but have never seen them do this before, can't wait to ask them about. My therapist said they use it a lot in Europe. I go twice a week so hopefully I will see great improvement soon!
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Msbelle-clearly I'm not a doctor, but I just looked up laser therapy for PT and I'm curious because it supposedly works by increasing blood flow and stimulating cell metabolism. It seems odd to do that during chemo since chemo targets cells with higher metabolism to a greater extent. Maybe it doesn't increase it enough to cause the chemo to damage those cells, but it might be worth asking about. I'm just armchair quarterbacking...
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Masserz...the lady who did my brows is at a cancer salon so she does all types of cancer tattooing. She told me...and I would like more input from others posting here...that eyebrows dont come back in white or grey like the hair on your head. She said they sometime come in wiry and will stick up in different directions but dont usually have pigment issues. I got one color done today...just really fine lines. I go back in about four weeks and get a slightly different color added on top. They stand out right now but in few days they should look natural. It hurt as much as waxing...kind of felt like being scratched with a wire brush.
Tch #2 tomorrow...yikes! On a steroid high right now... -
I got my port today to get ready for chemo next thursday. It has only been two weeks since my bmx with diep so it is pretty sore. More so than the first time I got one 11 yrs ago. I am extremely constipated from the percoset and Im trying to take advil during the day to get off the percoset before I start chemo so I am not hit with even more constipation if that is possible. I am so glad that this board is here with all you wonderful ladies so I can speak to others that understand. Im trying to keep a positive attitude but I think I am taking this dx harder than the first time. Seems so unreal that this has happened again. Im trying to concenterate on the fact that I found it early again. I hope everyone that has just had another treatment recently are not suffering from to many side effects and it is going smooth.
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Welcome Zilla - there aren't very many of Stage 1's Her2 Negative in here and you are a Grade 1 too? Can I ask what your Oncoscore was? Like you, I was still on Hydrocodone until 5 days before my chemo. I didn't get off of them because chemo was approaching, but I was glad I did because for about 3-4 days, havoc ensued when my body realized it not longer had to hold on. Then chemo started and a bit more diarreha, but nothing like getting off the Narco. I can't imagine if those two events had collided....I literally lost 13 lbs in a manner of days. (I had added Sennokot and it might have worked too well....back to constipation, though, Day 6-8.)
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Masserz- The bead
idea is great. I am not sure how any of my
Dr.s would react however. After my first
Mammo they sent me straight to my OBGYN because of the swelling and I still had
a sticker on from them marking the scar from a previous lump biopsy (5yrs ago,
negative). My OBGYN asked why I had a
sticker on my breast and I told him I was decorating. I don't think he thought that was as clever
of an answer as I did. Hadn't thought
about uniformity issues but I agree that is an important consideration. I will have to talk to you more about BMX and
how it went as time goes on if you don't mind.
Love my Dr.s but as they have never been through this there is some questions
they just can't answer.Alicea- My IUD was Mirena, hormone based, that released
small amounts of a progestin based hormone and as I am PR+ it had to go. I had them replace it with the paraguard.Well, night all.
Sweet dreams. -
cmcclean - I chuckled when I read your post about the decoration. Before my BMX, I toyed with the idea of putting a bullseye or an arrow of some kind on my breasts. My BS is an awesome surgeon but tends to be very focused and serious. I thought it would lighten things up a bit - Lord knows I needed some kind of humor on that day! But, in the end, I chickened out. I applaud you!
Zilla - Wow, your chemo is so soon after your BMX. Is there a reason why they're doing it so quickly? My MO wanted to wait for 5-6 weeks after surgery before he would start mine.
Alicea - Thanks for the info on A/C and constipation. I'll make sure I have something on hand to alleviate it.
Marchers having chemo today - March On! Hugs to you all.
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Lisaj - I never had RBM befor chemo so I was worried about constipation. So far I have been very regular my nurse recommended Colace and Senna they have been working really well for me so far.
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Masserz: thanks I will ask them. I imagine it's ok though. My PS sent me to this particular one because she specializes in breast cancer/oncology/lymphadema therapy. I'm all for anything that will give me comfort at this point. Was not prepared for this part.
I am still trying to figure out this claritin thing. I am finding half of us use 24 hr claritin and the other half claritin D. Which one really works best?? My ONC said claritin without D. I get my first neulasta shot next week. I want to be prepared?? -
Msbelle- i keep getting different answers about claritan as well. I have seen many postings in this forum that we should take claritin d, not the regular, but then the recent post about heart issues has me scared. I have serious heart disease on both sides of my family and have an irregular heart beat and cardiac entrapment from a concave sternum so I'm very careful about what I take. It never occured to me that these meds could have that risk...i tend to think more of liver issues with them. Anyway I asked my nurse about it yesterday and she said they have found it doesn't matter which you take. I'm beginning to get the feeling it's one of those things that depends on the person. Not much fun to experiment with though. I bought both just to be safe, but will start with the regular because of the potential heart issues. Luckily I was able to skip the adryamicin so I don't have quite as much additional risk as some of the other brave ladies in this group. I have my shot today so I'll be sure to let you know how it goes.
Cmclean- i would be more than happy to talk to you about the BMX and how things go, why I did it, etc. my story and my cancer is a little weird, but if I can help you, I would be thrilled. Feel free to PM me if you want to discuss more offline.
Lisajcj- i almost did the sticker/tattoo thing too. I was thinking daisies. I may still show up to a PS appointment with something silly. My PS is an older, very sweet man, but a tad serious so I feel like shaking him up a little. : ). My GS would fall over laughing. She's actually really fun. My MO would probably quietly stick her head out the door and call for the resident psychologist.
So, so far today, I still have lots of energy from the steroids. I barely slept last night. Like others, I was up to pee constantly. I took a compazine before bed because my nurse said it might help me sleep. Not sure if it did anything, but I did manage to drift off occassionally. I have a mild headache, but needed to take Tylenol for the Neulasta shot anyway. The swelling in my extremeties is down, so now I'm hesitating to get the IV today. We'll see. My tastebuds are gone. : (. Ate a banana this morning and couldn't taste it and my coffee just tastes like metalic water. But at least the brimstone burps have stopped! So far I'm not constipated so I'll definitely keep on top of the stool softners to see if I can keep it going. Keeping my fingers crossed for an easy day. I plan to take it easy, but outpr weather is gorgeous and I'd like to feel up to sitting in the backyard if nothing else.
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