Has anyone started a Dec 2011 group?
Comments
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Gator and Mardibra, I'm so sorry.
Are you both doing DD taxol?
Gracie and Rachel I hope today finds you feeling much better.
Healing prayers and thoughts for you today.
Laura -
I hope you all that are feeling bad today feel better. I take Vicodin for about 3-4 days after to help with the pain from taxotere or neulasta. It helps.
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Yes, DD Taxol. The pain is awful and the meds don't begin to calm the pain down. Plus they make me nauseas. This sucks!
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Gator and Mardibra - I am so sorry you are having such pain with your Taxol. Maybe your MO can give something stronger to help. Hang in there ladies...gentle hugs.
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The NJ Tpke on chemo.... ugh. I made it back and forth to Newark, but the trip up there was somewhat surreal. Fortunately the press conference and concert was worth the effort. Time for dinner and collapsing now.
Sending hugs to everyone with aches, pains and annoyances.
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Sorry some of you are having a tough time.. The first one taxotere was the worst for me with the body aches..my first MO gave me nothing for pain..my second MO gave me a rx for vicoden and that did help..the tx I did not get the neulasta shot and the pain was bad..the I got the neulasta the second time and like I said I was proactive with pain meds it really helped..it's tough to treat the pain once it starts.
My aunt shared a song with me (she's a 25 year survivor) and i thought it summed alot of this crap up pretty well. I got kind of teary eyed so those of you taking the steriods maybe wait till after your done..I don't do well on the roids! The link is below.
Heather
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So sorry to hear some of you are having pain with the Taxol. I have been fortunate with the Taxotere/Claritan/Aleve combo. I hope you will have LESS side effects with your future treatments. Gentle hugs and prayers for you!
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I am on DD of Taxol. OMG!!!!! The pain is unbelievable. I am calling my MO today. I found my leftover vicodin and it does not help at all. I barely slept last night at all.
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Mack truck day #2, but it's subsiding a little. I managed to get outside and walk, which I think helped a lot. At least it helped my mood - I love birds, and there were robins and chickadees galore. I think I'll be able to drag myself into work for a few hours. Taste buds are acting a bit off... I hope the olive oil trick hasn't deserted me...
Hugs for everyone and hoping you get some relief.
Heatherb8 - I haven't checked the link, but I will in a bit. Thanks for passing it on.
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Wow Rachel good for you, it's cold out! I can't believe you will go to work too.
I don't know, I'm only 3 days from beginning taxol and I still am dealing with side effects. Hoping to eat solid food today, mouth and throat were so bad. If that's a taxol side effect, 12 weeks? I don't know...See the onc tomorrow.
Mardibra and Gator, so hoping you've had relief from the pain.
Hugs to all, Laura -
Pain is a bit less severe today thank God! Talked to my MO and they just upped my oxy dose. Guess I will just have to live withit for a bit.
Thanks for all the good wishes. -
Hey ladies,
Hope all those achy bones are starting to calm down. Somehow I feel a little pissed that they have been telling me, and seems like you guys too, all along that the T phase is tolerated better by most compared to the AC phase. I haven't counted on it being easier for me since I haven't reacted typically to this whole crazy routine, from Day #1.
So, my final AC is this Thursday. I hope I don't end up wishing for it back once I start my Taxol. We just reserved three nights at our favorite spot in the White Mountains starting the day of my shot following my 2nd T treatment. Hope this doesn't bite me in the ass.
My only SE that is continuing to be a VERY LARGE pain, and I think it is from the squirrel crack Decadron. Am I hearing you right that some of you are taking this BEFORE the T??? Oh my god I can't take any more of that stuff. My last dose was two Friday's ago and I finally slept decent LAST NIGHT! But that is not the issue. Somehow this side effect wasn't on the list anywhere that I have read and my fine friends NOBODY has brought it up either.
So, once again here is sno for some comic relief. I Broached the topic of H-roids, to everyone's amusement, BUT. . . .this is worse!! My female parts/nether region has decided to swell to ungodly proportions, and may I say. "THIS IS NOT PLEASANT!!!" I am walking like a f----n penguin, wiping is not possible, let's talk textbook friction/roadrash. To add insult to injury, the poor MR. is looking at me with those big "I miss you, cow eyes" and I am definitely at that place where NOBODY is getting near there ANYTIME soon. It started after Tx#2, but was masked by the nasty roids, This time, #3 the roids are under control and it started up about day #6 and is just subsiding now on day#14.
I almost feel a little bit of sympathy for professional baseball players needing to adjust multiple times on national TV, cause this is NOT my idea of a fun day at any time.
Any help there ladies??? after you're done chuckling?? Why do I get these crazy ass side effects that none of you guys do??
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OMG...OMG....The lady bits....I'm sorry you are going through it but you are not alone!!! I thought I was the only one!!! I was scared to say anything to anyone!!!! Holy cow...I was like what in the heck is wrong????
Here's one for ya....I passed out while having diarehea on Sunday on the POT!!!! Girls...you can't make this stuff up. I called for my hubby because I got the shakes and the room was going dark...he's holding me up...probably worried that he is going to have to call 911 to get me off the toilet! Someone needs to to write a book about all this stuff they don't tell you!!!! Being bald has been the easy part...good grief!!!!
I get the extreme bone pain as well. I found that Ultramm and the Claritin work for me but I am down for the count for 1 week after treatment. I have the Sancuso patch (emmend in patch form) and still take compazine and ativan for the nausea. I was so constipatted after last treatment that I got to go to the ER to get "dug" out and a nice enema. Let me just say...when you have hemi's and the saline enema hits them...man...talk about extreme pain!!! The Dr. said it was epic and that I was ful from top to bottom...hence the mira lax cocktails this tx. They are working...too well. 2nd week after tx always gives me the opposite effect...uughhh!!!!!
Seriously...when I found out I had to have chemo, I couldn't stand the thought of being bald....I will be bald forever not to have these SE's!!!! Seriously....
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Mardibra so glad the pain has lessened. Hoping so for you too Gator.
Sno you continue to be an anomaly! not quite sure how to treat that particular se?
Dougieswife you must have had such pain. Hoping things straighten out for you.
Meeting with onc tomorrow, thursday taxol # 1. Gotta tell you, I'm terrified. I didn't do well at all with AC. Still fighting thrush, sore throat that begins every afternoon and just intensifies. Now def feel like I have a UTI. It was getting difficult to get my usual amount of water this past week.
Oh ladies. This is tough.
To all, feel well.
Laura -
&$*@(&$#(
That's for losing the post I had just written. SEs have been draggy, but not quite bad enough to provoke the above.
Sno - I'd laugh, but it sounds like it's too painful so I'll just chuckle lightly. I don't have the rash, but I've also noticed in the shower that the region down there is, well, poofier, than usual. I figured since the hair's been departing, it was just more noticeable. Can't even start to think of what's up with that. And I can't pee straight - it keeps whipping up and hitting my thigh. My BF knows not even to think of asking, but at least I managed to keep him happy midway through my last treatment - used a Victoria Secret coupon for my bday and actually had energy that night. That should hold me through, say, the spring. I figure if he can look at me, bald with bmx scars and shape-shifting TEs and tell me I'm beautiful, I owe him something.
Dougieswife - Sorry to hear you passed out. My first ER trip was similar - though I was decidedly NOT having diarrhea and my period came on ultra heavy at 4:30 am. I wound up on the floor when I tried to get up, and had no color, not even in my lips. On-call onc told me to get to the ER in case I needed a transfusion. Didn't, but it's gotten me to take my iron supplement regularly now. Glad that your system is at least cleaned out. I hope it stays in better shape going forward.
Gator and Mardibra - Hope the pain has eased up a bit.
I made it through a few hours of work, which combined with yesterday's time doing work makes it an even. But even after emailing ahead that I had been hit with a Mack Attack, one of my coworkers was bugging me about getting something done, when I had set different priorities. I guess hers were a bit more timely, but these things don't air until tomorrow, and they could have waited a few extra hours. She's under pressure, I understand, but.... what about me? At least my boss is really cool about all of this. He'd do everything himself (almost) if I called in and said I was out for the week. Hoping not to have to take advantage of that.
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Sno and dougies wife..I agree the se's are worse than the baldness that I was oh so worried about..But I can say I did not encounter the same down south side effects you all are esxperiencing..and frankly I gotta say I'm so glad it sounds down right awful..now I probably jinxed myself and I will get them on my last tx..
Rachel...I'm impressed you were able to muster up the energy you did with your victoria secret coupon..my poor DH is going on 12 weeks now, but I do what I can just not "it"! Oh my one of these days I'm gonna have to catch him up..but I'm so darn tired the thought if it makes me want to just nap!
Hope all have a restful night!
Heather
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I finally got around to playing with a camera tonight. Not the best, but here's my hair history. Let me know if the link works.
I included the one of me with the remains of my hair... curious to see how long it lasts. Not worth it to shave at this point unless I want to go bald in public.
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I don't know if you'll have to log in... If anyone has another suggestion of posting photos I'd love to hear it. I'm keeping my cancer experience off Facebook, so I'm not about to go that route.
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Rachel..I was able to see it, but had to login/create an account, but I needed to do it anyway..you look fabulous and I am so proud of you for not actually shaving your head..I couldn't take it and had it shaved when I started pulling it out by the handfuls..the scarves look great, I haven't used any scarves..I'm not good at tying them. I started wearing a dew rag around the house and can tie them ok..I normally wear knit winter hats or my wig..
Great idea with the pics!
Heather
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rachel - awesome pics, your scarves and hats are beautiful on you! I wish I was brave enough to post mine. My DH and DD are the only ones who have seen me bald. I think the DD has been kicked off that list now. My DH and I picked her up from college Friday for the weekend and she was in the backseat on the drive home. I couldn't take the wig anymore so I yanked it off and went commando since it was dark out. She told me laughingly that I look like Paw (my dad who is 74) from behind! Shame on her! LOL
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Rachel, I get onto the website but cant seem to get to the spot to pull up your photos? Can you tell me what I am doing wrong? I was interested to see what hair you still have in contrast to me shaving mine. Thanks.
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I did not shave my head either. My hair stylist told me not to. It was shoulder length, (my avatar) and we cut it into a pixie cut. Now, it has definitely thinned out way too much not to wear a wig or a hat. But, she said with 4 treatments, not to shave it and we'll see it at least some of it sticks around giving me a head start when treatments stop. I do find it odd that the hair under my arms and my legs is continuing to grow. Shaved both areas today. Hope it's not TMI, but still have hair "you know where" too....
Felt so normal today, I stopped after work (half day) and got my nails done. I finally feel human again after last week. TC #3 is Feb 9th. -
Does anyone have a dry cough? I don't know if I have a cold or if it is a side effect? Lol.
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whata - no dry cough but today one side of my nose is plugged up and I feel a little froggy in the throat. I hope I'm not getting sick....UGH!!!
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Rachel that is still a pretty good amount of hair remaining. Now is there further hair loss for you or has it stopped? It almost makes sense to not shave it all off as you will be starting with a base. Where I shaved it down all the way.
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I assume more hair will go after each treatment. But I agree about not shaving it if it hangs out. The really helpful thing is that the hair in front of my ears and behind my neck (usually a sense of aggravation!) helps make it look better when I'm wearing a hat.
Had an almost normal day, other than worrying about germs all day. And the thermometer says.... 99.1. Phew. I think I'll go nuts if I get a fever this time. Have a good night all.
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Rachel - you look great in your hats/scarves! I bought some scarves, but just can't quite figure them out. My face is too round for them. I wear my wig most days and then a casual hat (or nothing) in the evenings. I'm thinking about getting another wig, just for a change. Thanks for sharing!
Sno & Dougieswife - sorry you're having those SEs. . . yikes! As if you don't have enough to deal with, right?
My poor DH thinks that he has to wait until the treatments are over. . . shhhh. . . don't tell him otherwise! I'm too tired, and this time I'm NOT making it up!
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Mandrba - I am so hoping since your MO has upped your oxy, you are finally feeling some relief.
Sno & dougieswife - Oh, you poor women! What horror stories you have to tell of your SE's of your nether regions. Sno - you tell the Mr. you are using the cancer & the chemo card till you get through this. And dougieswife - passing out from diarrhea & a trip to the ER for an enema, talk about one extreme to the other. No kidding, seriously!
Laura - Will surely be thinking about you as you start your Taxol on Thursday & hoping you were able to hydrate.
Gator - hoping you have found some relief for your pain as well.
Rachel - Way to keep the BF happy with the VS coupon - I'd say that should hold you till spring. My hubs knows not even to "speak" of it until I am ready, so I do admire you.
Heatherb - Like you, I can't tie a scarf & make it look good for the life of me. I'm so cold blooded, I thought my bald head would make me freezing this winter (at home), but it turns out it's quite the little steam engine & I rarely wear anything on it at home.
Momof3 - so glad you got your nails done! Unlike you, I've lost the hair on my legs, under my arms & "down there" , but dang if I didn't have to pluck a chin hair - no fair!
Whata- I didn't shave my hair down all the way, but did get it buzzed - that's all gone now.
Bailey - Your secret is safe with me with your DH. Just do the same for me!
I had my 3rd treatment last Friday, & have been having a harder than normal time with SE's from this one. The bone and nerve pain started yesterday along with a low grade fever and were the worst they have been. For 2 days I've done nothing but rest & sleep. I've kept a close eye on my temp as I have to call if it goes over 101.5, but it's remained around 100.1, just enough to make me achey all over. Hoping by tomorrow it will be somewhat better.
Everyone take care & get a peaceful nights sleep.
Gracie -
Good morning ladies,
Appt with onc yesterday, decided that since I has such a difficult time with AC I will be doing the weekly taxol. Seems like forever.
In feel like I'm starting this in such a weakened state, nervous.
Bloodwork shows I'm a bit anemic, yet she did not prescribe supplements. My usual slow pulse now is many times over 100, and that's resting. How can I exercise? Frightening. Have been running a low grade temp for days.
Mouth still has sores, she actually had to look away. How do you think I feel?
When I read of others with this problem on taxol, I cringe.
So we'll see how it goes tomorrow.
Keep me in your prayers and thoughts, mine will be with all of you too.
Laura -
Rachel you look wonderful in the pics! I still have quite a bit of fuzz on top.
Laura I hope Thursday goes well for you. Sorry it has been so difficult. I will be praying for you.
Gracie I hope you feel better. My 3rd tx was hard on me too.
Whata I haven't noticed a dry cough with my se's. Maybe it's just from drainage?
Momof3 that's awesome that you got your nails done. I just keep using strengthener and hoping nothing happens.
Dougies hope you are feeling better and haven't had anymore of the big D. Losing hair has definetly been the easiest part of this for me.
Sno I noticed a little swelling down there last week but it went away. Hopefully yours will too.
I have been doing ok this week. Just tired and lazy feeling. Not looking forward to tx4 next week. Hope all are well!
http://www.youtube.com/watch?v=7tx7bei7zcU&feature=autoplay&list=UL_Xp_IhS-hD0&lf=mfu_in_order&playnext=1
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