August 2010...anyone starting chemo besides me?!
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Good luck today Onemonga and Zachsmom! You can do it!
English_Teacher, are you feeling better today? They do say the side effects are cumulative so maybe that is what is going on but hopefully you will start having more energy soon.
Wherria, I'm sorry to hear that you are feeling so rough. I have worked in the mental health field in the past so I know a lot about bipolar disorder and psych hospitals. It sounds like you are doing everything you can at the moment to maintain your mental health. Just keep doing what you are doing and come here to talk it all out whenever you need to!
Lisa, you look great in your new bald pic! Liz's comment about being an Old Navy mannequin cracked me up.
Regarding the hat/wig/scarf discussion, I have been reluctant to get a wig because of how uncomfortable everyone says they are. I recently found out that my local American Cancer Society has a "gift closet" with donated wigs and hats that are free for cancer patients. So I think once I lose my hair I'll go over there and check it out. I have heard that wigs fit differently once your hair is gone so I thought it would be better to get one after the hair goes. But what I think I will do most days is wear knit hats. I'm a knitter so I knit myself a bunch of hats in various colors. I made them out of a soft cotton so they should be comfortable on my tender head. I imagine I will look odd wearing a knit cap in Florida in September but we'll see. At this point I think I would rather feel comfortable than look "normal". Anyway, my photo here is me modeling one of my hats. I tried to tuck my hair out of the way to give the effect of a hat with no hair. Some ladies that I met at the Look Good Feel Better class were big fans of baseball caps, they said that they found a bunch at Wal-Mart for like $3 each or something. So there's a bunch of different ways to go with it, which hopefully can make things a little more fun. Plus I keep telling myself not having to wash and dry my hair in the morning will cut down on my getting ready time!
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jsw - you look great in your knit hat - that's awesome that you knit your own. Personally, I find that I look more "bald" in a baseball cap than in a scarf - don't know why that is. I bought 2 really cute hats I'm wearing often. It is hot here in Northern California at the moment (a rarity) and the scarves are cooler.
I go in at 2:00 for tx no. 2. I went to acupuncture yesterday and am feeling good at the moment - hope it lasts.
Good luck to everyone going in for the first time today. Welcome to the club! (Oy...)
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Re NEULASTA bone pain- I've had it twice now and I find the pain begins somewhere around the 24 hr mark and lasts for about 4-6 days. But I think I have an extreme reaction to it. At least that's what my onco thinks....0
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Omaz: I got mine at 9am. Funny, I was told to take 2 Aleve in the morning and night, today, tomorrow and Thursday. I've just not felt anything yet and wondered when to expect it. Probably right when I'm ready to go to sleep -lol. Tonight I'm taking a sleeping pill. I need some sleep!
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Jsw: I've been admiring your knit cap for some time now. I'm REALLY impressed now that I know you knit them yourself. I'm in Florida too and am getting my hair cut off on Monday. So I'll join you in looking odd with hats on during this weather.
Sweeny: Thanks, that helps. So maybe I'll be able to sleep tonight. Sorry to hear that you have an extreme reaction to it. How many more left?
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Question: can we take Tylenol and advil while on chemo? Has anyone been prescribed pain killers (not like we all don't have enough left over from surgery!)? ENHANCEMENTS to our thread
Good day, all! We are in the final stretch of August, and the preponderance of our crew have already started and we are about to shut the barn door!
First: What I would like is if you all could, sometime in September, post about what stood out after your first tx and, if you all participate, I would like that to happen monthly to the end. The purpose is twofold: for those yet to join us to be able to read our experiences with ease (so they know when they see these monthly updates from each of you starting with the below sentence they can see how each month went and what the lowlights were!) and also for each of us to track our own progress as it might be cool to look back on and mentally it helps us mark the end!
An example of how this might read is: After my first month on chemo this is what I remember most about it: I had 2 tx's and (insert a few sentences).
Second: now that just about everyone, except myself and a few others, have started chemo would you all like me to put your "regimen" next to your name now that we are all settled in? Let me know. Consequently, to do this you all would have to PM me your particular regimen and I would list them where TBA's and the "On Deck Circle" used to be.
Let me know what you all think-
Your FEARLESS Leader!
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Lizzy: I think it would be a big help to see what treatment everyone is doing so we'd know if we are comparing apples to apples (drug to drug). I'll be doing FECx3 then Taxol x3, beginning August 31. Thanks again for all the work you put into keeping our August forum going. You make it fun and informative.
Regina
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I like that idea too, Liz. I'll PM you with my regimen.
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Just got back from the Look Good Feel Better Program- which shall now be ever named in my mind...Look Good Feel Like A Pukey Frosh. That's right. I got my make up done, learned how to apply mascara, got all JLO glowy and then.....I barfed in the parking lot. Urgh. Feel like crap. Must go to bed. (But the makeup is GREAT, just a little streaky...:)
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Well ladies number 1 session is over. It took 3hrs. just like nurse Teresa said it would be. Not bad at all. The port, for me, is a medical miracle, no vein searching, beating or any other torture. Now waiting for any SEs but first session is over with three to go.
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Lizzy and everybod: Regarding Tylenol/Advil. I cannot stress this enough. Do not take either UNTIL you have asked your onc which one to take. Chances are, one or the other will be fine, but WHICH one is safe for you to take depends on which drugs you are on. I, for example, was told repeatedly and strictly, "Do not take Advil." But I can take Tylenol to my heart's content. Other people will be told just the opposite, and still others might be told that either is fine. But please, ask your once first.
And not just about Tylenol/Advil, but any OTC med like cold meds, antihistamines, laxatives, and also (and this is very important) about any vitamin/mineral supplements or herbal remedies you take or would like to try. They may be just fine, and you may get your doctor's blessing, but some of these things ARE contraindicated with either the chemo itself or the support meds that go along with it.
There, I'm done speechifying!
I want to say thank you again for all the support you all have given me throughout my dog's illness and eventual death. It has been hard for me to talk on the phone with friends and family about it, because I just get too upset, but I have found myself coming here, to my cancer support group, for words of compassion and understanding about the loss of my sweet Bixby. Bet y'all didn't know you'd be offering pet grief therapy when you signed onto this list. But you all seem to understand how this loss and my cancer experience have become intwined, each one making the other one harder.
I am doing a little better today. At least I've been able to keep my crying to only when I am at home, and not at the checkout line in a store or at the library. Also able to get together with a friend for coffee. (Well I guess I cried a little then. Oh well. )
But, although my chemo Tx yesterday went fine, I've been surprised to begin feeling side effects so soon after. I am experiencing more nausea, more diarrhea, more muscle pain, and more headaches today, on Day 2 than last time. Last time, all I felt was tired all day, a backache, and about six hours after the Neulasta shot, I began to feel the bone pain. So this has me scared about that whole cumulative thing we keep referring to and reading about. I guess I had just assumed it would just be a little harder each time; now I'm beginning to fear that it will be a lot harder each time. Someone please say something to help me stay in the present, and not the unknown future!
BTW, I was at a store this afternoon, with a small cap on, and some kind-of-neutral-kind-of-feminine-looking clothes. As I passed through the sensors on my way out the alarm went off, and the employee who was watching the registers (it was a self checkout line) and the doors, called out, "Excuse me sir, could you come this way?" Then, once I'd turned around to face her, she stared for about five seconds, then said, "You're okay. Have a nice day." and I went back through the doorway, with the alarm still sounding, and headed toward my car, just kind of chuckling to myself.
Best wishes to all.
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Omaz - regarding your question on the Port and Heparin.
Everytime the Port is accessed like for blood draws, etc, the first tube of blodd or sometimes the first two are disgarded. Has the heparin in it.
Before the port needle is removed - like when chemo is done - you should be getting a saline flush followed by a heparin flush. The heparin stays in the port and prevents it from clotting. The tubing that you are feeling near collar bone is completely normal. For most it goes over the collar bone and into a vein in the neck. Yikes is what I thought when I heard that.
Hope that helps!
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Ohh Sweeny, I'm so sorry
I hope you are in bed now.Yeah, onemonga
I hope you contine to feel well.Wherria, sorry about the side effects coming on sooner. I'm nervous about that too.
That is hysterical about you in the store.0 -
Sweeney: You cracked me up. I just got off the phone with the ACS and signed up for a LGFB class in Sept. Now I know to take barf bags with me.
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Wherria: I knew there was something up with that Tylenol /Advil thing! Ok...I am having my pre-chemo nursing consultation on Monday, I believe, so I will pop that on the big question list! The store story was funny!
Ginger: exactly what you describe about the bone pains is what I am in fear of. Did you get Neulasta? Did you take Claritin?
Keepingthefaith: glad you like your new onc. I am also like you with the hair business. I finally bought a wig and I am a weekend baseball cap wearer anyway so I had NO shortage of those! I also bought a scarf. The ACS has some links to sites they condone! I have been using one and am happy with the stuff (hat/scarf combo, hat, wig, scarf) I have gotten from them. If you want the link, PM me. I do have to do something with this hair as chemo is starting next week. It is all becoming so real.
Zachsmom: good way to start the day! Good luck today.
Sweeney: swag it up, sister, but in no way are you in Rachel's INTERNATIONAL swag category!!!!! Or perhaps Swag-less with that parking lot gig!!!!! Question: is there a reason they give us makeup? Is it like special chemo makeup?! I now this sounds stupid but I really don't know if chemo affects our skin and that is why they give us this makeup? I am not going until September 16 but was just wondering what the story was with makeup. I mean I wear it now but no cover up and stuff like that...mascara, eyeliner, a bit of blush and lANCOME JUICY TUBES!!! I am going broke at the rate I lose those $20 jokers!
Omaz: ridin' the Asian train with Rachel!!! A little acupuncture, a little wigging! There is so much flavor on this board!!!!!
Calamtykel: you are absolutely correct in this is our big chance to have some fun with these wigs, turbans, hats, scarves etc... ! We could never do this under normal circumstances and I know, we all would gladly give up chemo and skip wig fun if we could but it is our class this semester and we must take it!
Onemonga: good luck today. I hope things go well for you.
JSW: I am glad you enjoy my sense of humor...or that one Old Navy joke!
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For the record: I purposely started our thread *without* the types of chemo because of the potential for changes in regimen, changes in dates and finally, and to a smaller degree, the potential for you all to have created like mini-chemo groups within the thread. I think it worked out like this so the focus, in the initial phases, was on managing emotions and fears. Now we can discuss, in greater detail, our shared experiences with each particular type of chemo.
Your FEARLESS Leader!
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Hi all--Am back from LGFB and although didn't have nearly as an exciting visit as Sweeney (!), it was fun in a Mary Kay seminar type way. You get tonnes of SWAG which was great. I had a helper who was really into eyeshadow and really wanted me to put on more and more eyeshadow. By the end, I thought I looked really "made up" but my friend thought I looked good....granted she was killing herself laughing while I was trying to draw on eyebrows.
p.s. Strangely, I was jealous when the person next to me received MAC in their box and I didn't---I know jealous at a cancer LGFB.......sad but true!
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BTW--to go back to the question about whether to take Tylenol or Advil. Speak to your Oncologist first because they told me that they don't like you taking these when you are in treatment as they can "mask" the effects of the chemo and if you are getting sick and need to be treated--those OTC drugs may mask any fever. Check first.
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Rachel-
I would have LOVED to have been at LGFB with you!!!!!! Your friend laughing while you drew on your eyebrows...hysterical! BTW, my tattoo eyebrows came today!!!! Oh boy...I am so happy I have a good sense of humor because everything is hysterical these days!!!!! Back in my Manhattan days and going to the Village Halloween Parade (legendary!), I thought those were my longest Halloween (what do you mean? Halloween does not end on November 3 for you guys?!??!) but I have realized, with these chemo accoutrements, I am surely heading into the wildest, longest Halloween I have ever had!
Liz
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re the OTC pain relievers, I think that advice about asking your own doc is the way to go. For instance, mine said take Aleve AND Tylenol TOGETHER (if I got bone pain). My Primary said this was ok too, per package directions, and that it should be 24-48 hours at most. It didn't happen, and so hopefully won't........
I am doing 4 t&c. One down, 3 to go.....
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It was recommended to me to post here instead of just a general post, so here I am. I was diagnosed in January. I joined a trial that was taxol and tykerb every week for 16 wks. I finished that at the end of June. Anyone have any questions about those two, I can help a little.
I had my surgery in July, surgery went great, tumors all but gone, but pesky axillary lymph didnt get better, it actually got worse. So I am off to start AC (Friday) x 4 every other wk. Im a bit scared. I have heard such nasty things about it. I wont start my Herceptin (12 months worth) till after the AC, cause both the A and the Herceptin cause heart isues.
After the AC is complete, I will get rads for 5x/wk for 6wks. Not sure how I am gonna swing that with work yet, but will find out.
If anyone has done AC or is currently doing AC that would be great, I would love to hear from anyone.
Thanks
Kim
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Welcome Kimmie68!- as I tell everyone, I am sorry you meet the ciiteria to be here but we are sure happy to have you!
I will add you to the list and welcome-
Your FEARLESS Leader
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KIMMIE68 - I am doing ACx4 then taxol x12. SE's for the first round - severe back pain on day 3 (newlasta shot probably) but it was ok on day 4, 1 bout each day day 3 and 4 of nausea and vomiting. I was on a trial so I don't know what they gave me for nausea. for the next treatments i have ativan, compazine and emend. bit a nausea on days 11,12,13 but ativan under the tongue stopped that. Diareahea day 13. one or two mouth sores that seem to have gone away. dry eyes and blurry vision day 9 and 10 - ok now if i constantly use artificial tears. The first access to the port was painful but i hadn't really known where it was and didn't hit it good with the emla cream before hand. not so bad when accessed for blood test last friday. 2nd round in the ring with the red devil is tomorrow. Now tell me about Taxol? Welcome to the group.
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seems like when i break down crying its when i think of all the bad things i have been through he past few months or worries about metastases or recurrence. when that happens i try to think of myself as a horse with blinders on and i can only see the path in front, that is the next treatment or test. I also keep telling myself that I will have a granddaughter and take her shopping at the mall and especially to victoria's secret when she is old enough!
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Lizzy thanks for the welcome, feel much better, I have tried posting in many places, but received very very limited responses, and was starting to feel like I had the plague along with the BC.
Zenith with the AC are you working? I work at an adult day center for the mentally and physically disabled. They come into the center always sick, you name it, they have it. I was told I would prolly get the neulasta shot, just not sure how I feel about giving myself a shot. Nausea and vomiting.... ewwwww.... I am nausous on a regular basis as it is, that is not something I look forward to, and hope the meds they give for it work.
Now the Taxol... the biggest thing for me was the neuropathy and the aches in my lower body. The worst of the neuropathy was my fingers going pretty numb from the tip to just about the 2nd knuckle and my feet up to about mid calf, but it was more of a tingly feeling with lowered sensation. My onc reduced my taxol when I told him that I could only feel the steering wheel in the palm of my hand. My onc did not want me to not be able to drive, once the taxol was reduced, the neuropathy lessoned, and I was good to go. My nails on my hands are still recovering, I did not lose them, they just died lower down about half way down the "pinkish" part of the nail. And once they grow out, they will be as good as new. There was some discoloring... kinda brownish/mustard like color.
The aches were mainly in my lower body, hips and legs. I ended up taking tramadol since the tylenol wasnt working like it had at the beginning. Unfortunately, the SE's are cumulative.
I did have some heartburn, but that was mostly for the first day or so after each treatment, and I was given Prilosec for that.
Overall, Taxol is very very manageable. If you read in other places about it, I have found many people said that it was one of the easier chemo's that they had been given.
Oh yeahh... hehe dont forget the hair, but I dont think that will matter much with you already having the AC. It took me like 6 wks to lose my hair. Its now growing back after being off the chemo since June... but its coming back in a interesting shade of silver and white.... IM ONLY 41, blah... I guess thats why they make dye. Although, if I lose it again with the AC, I wonder what color it will come in then.... hmm.
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Welcome Kimmie68, you couldn't have found a better group than this! Hang in there, Omaz
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Zenith - I dont know how old you are, but I do know that the chemo does some very nasty things to our emotions. I havent had a period since February (right before I started chemo).. They told me that it will mess with our hormones and put us into early menopause... which could be temporary or permanent... ohhh yeah for us... one more thing to have to deal with. You deserve to cry, and honestly I think that our crying breakdowns are great for us.. they are not pity parties, although we are entitled to those too, its cleansing for us, all those worries, doubts, and fears are being released leaving us alittle more cleansed and not so weighed down. Allowing us to carry on and move through another day. Oh yeah and crying isnt a sign of weakness, no matter what anyone says.
And you know, yes I am only 41 but I have a 23 yr old daughter and she and her husband are expecting their first child in January.... I am so excited. I do this for her and my grandbabies, I do this for my 15 yr old son, I do this for those around me that see that I WILL NOT LET THIS BRING ME DOWN. I am a strong woman and we can do anything we set our minds to.
Omaz - thank you so much, I look forward to meeting everyone.
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KIMMIE68 - I am on medical leave. I work in foster care and of course the kids are always sick and the caseworkers use up their sick leave and come to work sick so i decided it was better. Besides i have a union sick leave bank that will pay my salary but it's complicated if I come back to work part time so it is just easier this way. I will have to be on leave without pay sometime starting in Dec. I expect i'll be granted LWOP as it is part of our union contract. I will ask if i am getting a low dose of taxol. I was told i would lose my hair so i had it buzzed and bought a wig, hats, etc. i got some from ACS too. The wig shop had a chemo specialist and she was able to pick out one that matched my color and style. the nurse told me to stay on top of the nausea this time and take ativan and compazine at 2 hour intervals for day 2 and 3. I will also start to take percocet friday night and not wait for any pain before starting it.
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NY this weekend. There was one in Chicago last weekend...
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KIMMIE68 - I am 56 and postmenopausal. and yeah, sometimes crying is the only answer in any given moment.
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