August 2011 chemo, anyone w/ me?!
Comments
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Welcome jendon... You are definitely not alone....even though it sure would be great if none of us were here for this reason!!! I'm still waiting to start my treatment too and nerves are out of control lately....and now it seems like my start date is pushed even further!
We're all going to get through this....one day at a time!!!!
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Capinva...which ones Ativan, what's it for again? I am at the point I can't keep the drugs straight.... Lol. I don't think I have that one though?
Anyone know of there's much of a difference between Claritin or Zyrtec??? My onc told me to buy zyrtec but for some reason I think I took it a few years ago when my regular doc thought I had allergies....and it made me feel awful. -
Just wanted to pass along info about wearing a seatbelt and having a port.....My onco nurse told me that you don't have to wear the strap over the shoulder because there is a medical device and you will not get ticketed as long as you have a lap belt. I put my shoulder belt under my arm.
Welcome Jendon, you will find great support here!
I'm worn out. I forced myself to get up so I could go walk around the county fair for a while and take my daughter, it was pretty hot outside. I hope I feel like getting up for church in the morning, I just hate wasting the whole day sleeping when the steroids wear off, even though I know I need the rest. I hope everyone has a good evening....Kim
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I wouldn't sweat the sleeping , Kim. I haven't spent a single day in bed, and I wonder if that could be why my blood count is struggling to climb. I have never been good at being sick, always have to keep "doing".
Madis- ativan is for anxiety, nausea, sleeping. If all you have is compazine, you might want to be asking for it. That or zofran. Someone ( can't remember who ) on here has Emend, which sounds even better. But, compazine barely cut the mustard. Ativan really helps w/ nausea, and in my humble opinion, needs to go along w/ the compazine. I am hoping that zofran alone will work for me, as I seem to have the "restless" side effect from the ativan. It keeps me awake at night, and I was grinding my teeth. But, who knows? The restlessness coincided w/ my hair starting to go, so maybe I was awake because of that?
Claritin is the one that you want. My onco nurse admitted that there is a trial study going on now. The claritin seems to help w/ the neulesta pain.
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Hi all , day 4 now still not feeling any different no nausea, no pains , no mouth changes , hope its not just to good to be true, heading down for a nice walk on the beach now , today will be my first day off the steroids so I hope I dont crash too much. am also getting a little anxious again about the hair, only have a few days left and I really wanted to do a charity head shave, but still not sure if I will have the nerve yet, as its the biggest hurdle for me as I really battle with self confidence issues, I tryed wearing my wig out yesterday over my own hair where I didnt know anyone ,, but felt so self concious hope it gets easier. praying for the strenght !!!
Ive being taking the claritin for the nuelasta when does the bone pain generally kick in ?
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VtEllen, hmmm? I have compazine.... I wonder if I have the Ativan in generic and didn't notice because there's so much? I'm the one getting emend....but in my IV. Supposedly it lasts up to 5 days??? And than IF the at home meds don't work than they give me emend for home supposedly?
You need to TRY to get a little rest in bed.... Or on the couch or something? Maybe have a movie marathon?
I'm going to go buy claritin because I'm almost positive that zyrtec messed me up and if it's over the counter, does it really matter which one I take? Let me lift my lazy butt out of bed and see if one of my scripts is for ativan..... -
K, they gave me Lorazepam to take with the compazine....says it's for nausea and anxiety?
Hi summergirl...that's fantastic that you're feeling so good!!!!. I think you'd already have the bone pain by now, it seems like most are getting it the day after the neulasta shot for a few days so hopefully you're in the clear!!!
I hope you get used to the wig too...I think it's going to take all of us some time. I have put mine on over my real hair and look ridiculous....I can't get my real hair completely up, flat and out of the way. For the most part I do think mine look pretty "real" so that makes me happy.... It still sucks though!!! Hugs to you! -
Welcome Jendon2004 to our little club. This is a great group of ladies and a great source of information. Between all of us, we can answer pretty much any question.
Madismommy, I believe Loazepam is the generic name for Ativan. I haven't had anything like that in my cocktail. I have Dexamethasone (Decadron/Dexasone), Ondansetron (Zofran), and Stemetil. They seemed to do the trick last time. The ONC gave me another prescrption for some other anti-nausea meds but I haven't had it filled yet. I'll see how this week goes...if necessary I'll take the Stemetil more often.
Oh the hair front...I took a look in the mirror this morning and mine is definitely a lot thinner than a few days ago. I ended up with 4 wigs...two that I bought and two that my friend's mom gave me. To be honest, I'm not totally in love with any of them, but 3 of the 4 look pretty good...maybe I'll have a different look every day...blonde, redhead, brunette. Or maybe I'll just skip the wigs and wear scarves!! Guess I'll find out this week!
Summergirl, so glad to hear the S/E are under control. Enjoy your walk on the beach. I'm so jealous of people who live near the ocean. We have to drive 12-14 hours to get to the ocean. We do have the great lakes, which are beautiful but it's just not the same.
vtEllen, I'm with you. I'm not a good sleeper at the best of times and the steroids really did a number on me with round one. Typically things that are supposed to make you sleepy keep me awake.
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Madismommy - Lorazepam is the generic for Ativan. And yup, it's for both anxiety and nausea. I actually have Alprazolam - Xanax, for the same reason.
Wig research today for sure!
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Hmmm? I wonder why my pharmacy didnt put "generic for Ativan" under the script line, like it did with all the others??? I'm glad that's what it is though!!!
Michelle... I agree, the great lakes are definitely NOT the same....we have lake Michigan and it's beautiful but not the ocean! Hoping to see the gulf side of Florida in february....my familiy's celebration of "we made it through chemo"!!!
Robyn.... I have alprazolam too, Xanax is my friend these days..... Good luck on wig researching!!! -
Jendon - I have the same chemo regime, TCH every 3 weeks for 6 cycles.. Good luck on Monday!! Did you get a mediport put in? As for side effects, I got bad constipation the first time.. so by the second transfusion, my onc told me to take a laxative to counter it.. that gave me diarrhea! But.. I think I'd rather diarrhea than constipation.. everyone is so different, but my first time getting chemo, I was there practically ALL DAY!! from 9:30 am to 6:30 pm. The Herceptin they have to drip and watch you for like an hour after that to make sure you don't have any reactions to it. The next day after chemo, I'm usually normal, but by the 2nd, 3rd, 4th, day after I am a complete zombie; tired and lifeless, no appetite, and hot.
Koolaid - cool to know about the seatbelt!! I do the same thing, put the shoulder strap under my arm. I've tried to wear it normally, and I just don't like the way it feels.
Hope everyone is enjoying their day!!! Ugh, I can't believe its sunday already!
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Thanks for all the welcomes. Tomorrow is the big day. I couldn't sleep last night, doesn't help that my 2 year old is sick and running fever.
-aimska I do have a port. It was placed during my left mastectomy. It's been drawn frI'm once and I am not looking forward to it tomorrow. They said I could put ice on it to help numb it. Any other advice?
I see lots of talks about wigs, my insurance does cover one, but I don't know how to find one that takes insurance? Any ideas? -
Jendon....I would start with asking your treatment center, they have all that info for sure....plus, they will write you an actual script for the wig. Otherwise search the Internet through the American cancer society website for local offices by you....they can help for sure too.
Did you not get Elma cream to numb your port site before your treatment? It's supposed to help a lot!!! -
Hi everyone,
I hope everyone is doing well. I just wanted to mention that the American Cancer Society has been really helpful to me. A few have mentioned their "Look Good, Feel Better" program which is awesome, but they also offer wigs for free. I was so surprised when I made an appt with the ACS in my area. They were so incredibly nice, they had a room filled with wigs, all brand new. They were the same ones they sell on the TLC website. They are not super expensive wigs, but I found one that was cute and pretty close to my own hair. They also gave me a sleep cap and a nice scarf.
Just an idea in case anyone is interested. -
Madismommy,
I think we were posting at the exact time re the ACS!
Also, I have found that the port access is really no big deal. I don't use anything to numb it beforehand. It just feels like a small poke, nothing like having an IV inserted. But I am sure you could easily get a script for the EMLA if you wanted it. -
Hi everyone. It was good to read through everyone's postings. I hope everyone who had shots during the 8/8-8/12 week is having a good weekend too.
I had my first AC round on Thurs 8/11 and Neulasta on Friday. Basically I felt fairly lousy for the full next 8 days. Occasional hours when I didn't feel totally lousy, but those were short-lived and unpredictable. I used all the regular things prescribed for nausea, whose names I've now erased from memory but they're the same ones you've all been mentioning. My port site hurt, I was light-headed, I felt cold sores coming on in my mouth, I slept really poorly, it felt like my ear was clogging like from a sinus infection, I felt asthmatic, I was up 2-3 times every night to pee, I had diarrhea in the mornings and was gassy/bloated at night. None of those things all of the time, but some of those things most of the time. Somehow I was in too much of a fog to be as pro-active as I needed to. I felt *completely* over-medicated with the nausea prescriptoins and when those didn't work, I just got depressed. My mother is convinced that chemo was the wrong choice for me (she's a big fan of the Suzanne Somers book and is down on all "western" medicine). PLUS my 3 teenage kids are all (still) out of school and it rained for 3 solid days of the bad time. AAARRRGGGHHHH.
Then there was this miraculous feeling this past Friday morning when I woke up and felt *totally* normal. As if I'd never had chemo. It was what I needed to shake me out of the sadness. My doctor was very sorry that it took 8 full days to happen, but said that's what he'd hoped I'd have gotten to by day 3-4.
I already have a different attitude ready for AC round 2 (scheduled for Thursday 8/25). I'm ready for what it might be like. I've been using salt-water rinses 4-5 times/day and the cold sores are healing and minimal. I realize much my emotional mood made the whole experience worse. I'm scheduling acupuncture appts for this week and next. I'm going to log on here more regularly so I don't feel so isolated through this whole thing!
Diana
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why do you have to numb the port?? after the initial poke/stab, I don't feel a thing...
Jendon, I think how it works is that, your doc write you a script for the wig.. you go out and buy one, and submit that on your own with a claim, attach receipts, script - etc... I got a script but didn't bother doing all that.. I probably should've, but just was not motivated enough...
Good to know about the ACS!!! I need a cheap wig to wear to the gym.. I feel silly putting on my every day wig just to go go the gym and sweat in it!
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Re: port issues. The surgeon closed my port incisions with this glue stuff. Some kind of bio-suitable Crazy glue. I have two places of it, right above my port (about 2" incision) and then also a much smaller site about 6" away, on my neck (where they checked to connect it? don't know and too weirded out to think about it...).
Anyway, the residue of the glue stuff is really annoying. They said it'd "flake" off in 1-2 weeks, and they're right, but it's hard not to pick at it to try and hurry it along. I did a bit too much of that and irritated one site so now I've stopped.
Anyone else have the glue stuff?
Diana
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Dianamaps,
I could have written your post almost exactly! I am doing TCH chemo but I felt like garbage for 8 days as well. I kept telling my husband that I just felt "toxic". I felt so filled with medications. I just kept trying to drink water to help flush it out of my system. I am glad you are feeling better now. I feel almost normal too.
I have thought of trying accupuncture too. Would love to know if you find it helps you. -
my4pumpkins: Isn't it great to have turned the corner? The sun coming out late last week definitely helped too.
Yes, I'm sure I wasn't drinking as much water as I should have been to get stuff out of my body. I think I probably drank too much in the evenings (which contributed to getting up at night) and not enough in the mornings, too.
May these better feelings last until Thursday! Tomorrow's my birthday and I'm so glad it fell on a "good" day.
I'll let you know how acupuncture goes. Any one else trying it already?
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First chemo - AC - tomorrrow (8/22). So nervous about it, I got the numbing cream for the port yesteday. I am dreading the port stick because it is still really sore, Had it put in 5 days ago, I am having the same issues with the super glue stuff being annoying!
Hope all of you going through annoying or bad SE soon find relief, I am hoping I am like some of you and have none!
My husband went with me yesterday to a wig shop, Someone asked about where to find one, Your oncologist should have a list of wig providers in in your area. I am going to get the oncologist to write up a prescription so I can go ahead and get one or two or what ever insurance will pay for, It was kind of fun to try on wigs! I found three that weren't too bad. I even got hubby who is nearly bald and shaves what little hair he has to try on a wig. All of us got a good laugh out of that! Too bad I didn't have my camera!
Have a great afternoon everybody!
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I also meant to ask if anyone that has had AC how sensitive you are to the sun, We made reservations at the beach in May long before I was diagnosed for Labor Day weekend. I tan very easily but plan on staying under and umbrella if we decide to go. It all depends on how I am feeling. If I feel bad I want to be home.
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Ok how weird!!! I turn 43 tomorrow!! Unbelievable! I'm glad it fell on a "good day" too! My next treatment is on Sept 1st and my daughter turns 16 on the 2nd, so I hope I feel somewhat human that day!
Just curious, did you have the nuelasta shot? I was wondering if I felt worse from the shot or the chemo or a combination of the two...
Hope you have a Happy Birthday!. -
Dianamaps. I am doing the same treatment as you A/C + T and on the same days but thankfully my experience has been totally different. I have had no SE except for a little bit of constipation which was easily taken care of by senakot and a was little bit more tired for the first few days. Let me tell the things that I am doing and I don't know which one is helping the most but I am going to keep doing all of them. 1. I have been going to regular acupuncture appointments twice a week to help keep my system balanced and healthy. I know there is a lot research on acupuncture for SE but mine has been more preventive. 2. I have fasted for 50 hours before chemo drinking only water and taking my suppliments (got the ok from my onc to do this) I did research that talks about fasting that sends our healthy cells into protection mode so the chemotherapy only attacks the cancer cells. I am planning on doing this again this week. 3. I am taking a bunch of supplements including avemar, kelp, vitamin D, multivitamin, bromelian, AHCC, broccoli, l- glutamine. Plus since my diagnosis I have cut out all sugar, and drinking lots of juiced vegetables and fruits. Hope this helps someone and hopefully my next treatment this week will be as without SE as last time.
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Island Girl - I think we are suppopsed to avoid the sun. The cytaxon part makes us sensitive? We had plans to go to Maine the 2nd week of Sept ( actually was supposed to be our honeymoon
) and I doubt I'll feel up to it. But, mostly because of this fun low blood count stuff - I'd rather be at home w/ our own germs to deal with! Madis- Ativan/ loreazepam are one and the same. I plan to take one before next treatment, like Kasi did. Also, Summergirl - what was your steroid schedule? I am willing to bet that you dodged the SEs because you took the steroids for a longer period of time? 3-4 days after? That is also in my plan.
Went out to a restaurant last night sporting the cancer victum look in one of my scarves. No one stared or acted wierd around me. I thought I was feeling OK, but when I got back to the car, I realised my shoulders were all tight.
I am a big believer in accupuncture, but it really matters who you have ghiving it to you. I was all set up w/ a wonderful woman in Middlebury. Feeling comfortable and confident in the accupuncturist makes all the difference. Sadly, I had to cancel all of my appts. because my onc said NO NEEDLES!
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my4pumpkins: completely weird! I'll be 45 tomorrow. Happy birthday to us! Yes, I had neulasta shot. It was fine. My arm was just a little red for a while after.
vtEllen: We used to live in Middlebury! For college, and then again from 2003-2007. Now in NY. My onc has encouraged acupuncture. Is the anti-needles thing about just risking infections? How has the hair loss been? I haven't had any yet, but I got mine cut Halle Berry short in preparation. I tried on a few wigs last week but haven't ordered one. I've got some scarves ready too.
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Chava: you've got it made! I've never done any significant fasting, but have a very healthy diet and take a few supplements (multi-vitamin, extra vitD3, and turmeric). Before this cancer crap I'd managed to be really healthy throughout my life.
I'm also taking something called Asantae Amune (http://www.asantae.com/Web/ww/en/amuneplus.dhtml), which my mother sends me. I had a long talk with a cancer nutritionist about it right after I was diagnosed and he said its main ingredients (astragalus and AiE, which is basically bovine colustrum) are innocuous, so I've been taking it for a few months. Sure hope it's not contributing to the awful SE!
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Dianamaps and My4pumpkins, hope you both have an AWESOME birthday tomorrow.
I haven't noticed an sun sensitivity with the AC but then I'm not really a sun worshiper anyway!
Have a great Sunday everyone.
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Dianamaps- The hair loss is quite the extraordinary thing. I finially had my daughter cut my hair shorter, because the amount of hair coming out was incredible. I just can't do the wig yet, so baseball cap and scarves are what i am doing.
I can't do acupuncture because I have been neutropenic for the last 2 weeks. It is very annoying. My onco seems to want to avoid the neulesta shot. I thought I was all set to get them w/ the up coming treatments, but now that will only happen if my blood levels are still down at next treatment. Or if I insist upon them, but after viewing the possible side effects, not sure I'll do that. I am not anemic, so I feel pretty fine, just germ phobic. Had a big outing to the grocery store today, I walk around w/ my radar on - checking out for any sickly individuals!
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who's going for treatment tomorrow? i am. ugh. anyone else?
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