Starting Chemo July 2013

It's 4:30 in the morning, beginning of day 6 for me. I have been following all of you and thinking of each of you but just no energy to write. Despite the Claritin I have been hit hard by the bone pain. I've never experienced this type of pain before and just couldn't get on top of it. Finally called the nurse line and it took them 4 hours to get back to me. Can't understand why on the day of my infusion they kept saying to call with any problems but then they have such a poor response time when I'm really in pain. They decided to have me take the Vicodin that I had left from surgery. That gives me about 2 hours of relief before it's time for the next one. Totally strung out and shaky. I am going to be sure that we have a better plan in place before the next shot. It's funny how it doesn't bother some people at all. The good thing is that I can definitely tell it's working and I haven't had to go to the hospital like some of you.



Reading about all your hair decisions and trying to decide what to do. I probably have another week but I'm dreading the trauma and wonder why I'm delaying the inevitable. I hate being down in the dumps like this and hope it's just a few more days of discomfort. Feel like a whiny baby knowing so many of you have much greater challenges than I do. Maybe if I could just get some sleep . . .

Awe jeri,ive been really lucky with the neulasta shot,claritin and advil helped both times. It awful to have to go through pain,nausia,and emotional trauma all at the same time. Its almost too much at times. We are all in this together,all of us suffering in some way,my thoughts r with u with hope the pain will get better. Ang

Hello everyone.  I haven't been on for several days and had some catching up to do.  I was "lucky" to get a UTI just as I was recovering from chemo 2 SE, so I am on antibiotics.  So something else to watch out for.  

JeriGrace, hang in there.  I had bone pain from my first Neulasta shot but not the second.  I take Claritan every day anyway for allergies, so for me that was not the difference. So I think there's hope that this will not give you such pain every time.  Now unfortunately, I do have muscle pain really bad from the chemo, tightness all throughout including my jaw. And plenty of other chemo miseries! 

I am also getting used to being hairless.  I wear a ball cap outside in my yard or walking but I do wear my wig going to the store or out and will definitely want it for work.  I am still struggling a bit with my wig and have to get it cut when my hairdresser gets back from vacation.  I think the layers are too long for my small face.  Anyway I hate the GI Jane/alien look when I see myself in the mirror but most of the time I forget about it.  Angela it was not that easy to find something that matches my color either, which is kind of light brown with auburn and gold.  All the wigs are dark brown or too much blond if they are highlighted. 

I feel I am officially half way through since next week is treatment 3.  I really wanted to quit after the first chemo, but perhaps I can soldier on now.  We're all rowing the same boat. 

How do I get there?  I just got here today.

Thanks to all of you for the encouragement. Those middle-of-the-night blues are especially deadly. The Vicodin has taken the edge off so I am taking it every four hours today and then I'll see how tomorrow feels. I've had a headache since Tuesday which makes me a little crabby. it seems like I can't distinguish the SE very well. Like is the headache from the joint pain in my jaw or something else, is the numbness in my legs related to the bone pain or neuropathy. It's hard when everything hurts to really know what's going on.



I am taking the Claritin 24 but I didn't start until the day of the shot. Maybe next time I'll start one day sooner. I also read that some people only experience the bone pain during the first round so maybe it won't be like this next time. I don't want discourage anyone from taking the Neulasta or scare you about it. If it is helping keep the WBC up and saving hospital visits then I am fine with taking it. Just be sure you and your doctor have a good plan if you do experience the bone and joint pain.



I appreciate hearing how it's going for those of you in round 2. So glad you can check one more off and know that you are that much closer to the end of this part. Welcome August Chemo Sisters who are following this thread. Hope our experiences can help you somehow.



As TwoHobbies says, "Soldier on!"

JeriGrace, don't know if you saw that I experienced SEVERE bone pain from Neulasta too, pretty late in the game compared with others. I'm going to ask about taking Claritin longer.



Angela, how long did you take the Claritin-Advil combo?



Mellie, what's "dialaudid"? I'll try ANYTHING not to endure that again!!! I have a mouth sore too, on the inside of my cheek. I'm using the swish of liquid Benadryl and Maalox. Not sure if it's working, so I may call and ask for "Magic Mouth"



2bluestars,I LOVE that you had others join you
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Pattysmiles, With regard to the head shave, I'm wearing a sleep cap and have no discomfort with stubbies



Congrats on being halfway to the finish line, TwoHobbies



Ive had a pretty normal day, but had another strange symptom - when I laugh or shake my head I get a sharp radiating pain above my eyes!!!



Soriya, you need to call about your rash and I'm calling about the pain!

I'm just wondering when the side effects of chemo start?  I had my first session yesterday (7/26) and other than feeling like I was coming down with the flu that afternoon I have not felt anything.  I am on AC for 4 weeks then Taxol for another 4.  I had the Neulasta shot today (my hubby administered it) but I took an Aleve about 45 minutes before.  I have been very fit and healthy before this and since getting the go ahead from my PS to start working out 2 weeks ago with the blessing and encouragement of my onco nurse to keep it up during chemo, I wonder if all of that helps?  I will be taking Aleve again just in case it is what is helping with the bone pain.

I go for my 3rd AC treatment on Wed.  I am so dreading it  I swear this last one had me down in bed for 3 days.  I keep telling myself that it is doing it's job because the one large lymph is down by half.  I have dealt with nausea (that we can't seem to get under control) sore throats, mouth sores, constipation or the runs (there is no happy medium) edema and for the icing on the cake I have blisters on my right foot and right hand.  Sounds like there are going to lower my Adrimyacin dosage this time around since the blisters are a sign of sensitivity. The one thing I feel lucky about is that I am not having any major bone pain with the Nulasta, just some minor aching.  I take Claritin the day of chemo, shot day and then for 2 days after.   I am seriously funned out and don't want to play anymore.  I keep telling myself that next year this time I will look back and be proud of myself.  I have to just get there.  

Scribblinhana, a down day. Sorry it is so rough. Just live one day at a time and when a day is too long, just an hour at a time, or a breath at a time. I get #2 next Thursday. Just hang in there and save your life as you have lots to live for without cancer. Do we dare say we are cancer-free post surgery? Some do. Sending you healing thoughts and courage to face what is so very tough about this treatment. I guess I would rather have chemo kicking my butt than cancer so I will remind myself of that when my own dark nights descend. This is possibly the biggest baddest challenge any of us have faced. It makes me weep to think I have walked around clueless that so many women have been suffering what we now are suffering from dealing with breast cancer. Hugs, Sheila

Daisy72, just HATE you're going through so many SEs  seems we're all so different, but I STILL learn SO much from each of you!  Going through this armed with knowledge and options makes a big difference in my book ;-)

Scribbinhanna and SheilaB330, I'm with you on the constipation/diarrhea mess!!! I'm either one or the other w/o chemo, so this has been a challenge.  I'm afraid to keep taking meds to loosen things up when not needed, but also fearful of backing up quickly like I did the first round if I don't!?

Two Questions for you all:

1. Is anyone else having difficulty sleeping???  I just can't seem to make it longer than 3:30 or 4:00 when I hit the sack by 10:00   - except the 2 nights I had to take Lortab for my Neulasta pain ;-)
2. What about H2O - are you all drinking constantly ALL the way through or just around infusion time and a few days post???  I'll admit I've slacked off and am getting scared as round #2 approaches on Wednesday...

Thanks!

Hope this is a wonderful day, in at least a small way, for each of you

~Lynn

Hi troupers, Lynne Im still taking the claritin and advil combo day 6, last time I stopped taking it around day 4 and was in agony so went right back on it for 9 days,the pain is horrible so treat it as long as u need. my platelets and rbcs were low though,possibly from the advil but my onco wasnt concerned. Sleep,well,i get it when i can,there is nothing worse than being up at 3am with all those nasty thoughts(you all know what i mean). Ativan helps not only nausia but anxiety and sleeplessness so take it if u need it. Constipation,ugh,who knew? I'm taking womens overnight laxative tabs,and melatonin 3mg which is for sleep but has a nice side effect of stool softening. Husband freaking out unless i am wearing wig,put a scarf on for bed and he nearly jumped off the couch in fear. So I'll put the wig on first thing in the am,take the stupid thing off while he's at work then pop it back on 5 mins before he gets home from work,if it makes him happy why not. Hang in there all,this is not our summer but next summer watch out! Angela

I haven't seen it mentioned here lately but I chewed popsicles and ice chips all the way through the adriamycin push. I haven't had any mouth sores at all, just a sore throat for two days. I really thinked it helped a lot. I'm still fighting some nausea and heartburn but started on prilozac yesterday hoping that will help. I know I didn't drink enough the first week and am going to work harder on that the next time (Fri.) My hair is really starting to shed but I'm going to wait until I can't stand it anymore to get it shaved. I know I'm not going to look good bald. Might scare the dog.

Grace, the first two or three days I am tired with constipation starting and chemo fog.  The muscle pains start after that, and for me, the mouth sores came about a week later, but the second time I didn't get the mouth sores. 

Daisy and Scribblin, sorry you are having such bad SEs. I did too, and I think part of the angst was not expecting it.  My husband says now I know what to expect, and that it will get better, so that did kind of help me roll with the punches. 

Lark, sometimes I fall apart in front of my 16-yr-old.  At first I felt bad since I'm the mom and supposed to model strong, but I figured this is real life.  He does not seem any worse for wear and gives really good hugs and says he's already used to me without hair!  I think you'll find your daughter to be a comfort. 

I also have a rash just on my hand, Soriya.  I think your onc will want to know about it.  Mine does not itch and they don't exactly know what mine is! Anyone else have something similar?  I personally think mine was caused by the steroid because I felt it get irritated when they ran the steroid. 

It has been cold here in Illinois, 60 yesterday and I can see that I may need some kind of cap to keep me warm by September.  Does anyone have any ideas on a non-winter type cap, not too hot, not too cold, to just wear around the house or taking the dog out?