March 2010 Chemo Start
Comments
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Just got back from getting my wig. It's by Gabor and the style is Instinct. I put it on my head and said to my daughter, "No way, let's just leave". Then the stylist came back in and did absolute magic with it. She tossled and fluffed and flattened the wig. My daughter got so excited (she's 30) and so happy with the way it looked that I decided to buy it. The back was too long, so the stylist cut it and then trimmed the sides. By the time she was finished, I even liked it. Just telling you all this so that you won't be too quick to judge these wigs like I was. If there is someone who knows what to do, they can make them look pretty natural. So far, it feels fine too. Perhaps I like it because what's under it now looks so bad! Wonder how I'll feel about it tomorrow.....
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Doing ACT (4 AC, 4T) every 2 weeks. Have my second one Friday 9th. It was all pretty easy apart from the foggy head i got about 4 days after the treatment. Any tips for this?
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Hi Marchers, Sorry to hear about the bone pain. Hope it's long gone by now. I'm glad to say my counts are up to normal and I'm good to go for #2 tomorrow. I was wondering...there must be a way to keep the wig from riding up...double-sided tape, maybe? Thanks. Julia
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Julia-Good Luck tomorrow. I'm doing #2 tomorrow also. Glad to hear your counts are good. Your wig is riding up? In the back? Is it too tightly fitted? Mine did that and I loosened it up a bit and it stopped doing that. Good Luck and hang in there! You'll be done before you know it.
Suzanne E.
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LillyC, Ana1973, and Julia 257 I am thinking about you and hoping the next week will go as smoothly as possible. Good luck my March sisters!
And thank you to all for the tips & congrats on my 'champion' bone marrow (I love that HereandNow!) I am so looking forward to the next week of feeling really good before I hit the chair for #2.
Oh, the hair started today. And that weird scalp feeling. So far it's just interesting in a kind of removed way, my brain thinking 'wow, one pull and it just comes off the scalp all at once" it is pretty weird, I have to admit.
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Thank you so much Suzanne for your kindness. I can't tell you how uplifting your support means to me. And Teemee too, thank you. My best to you both and all for a successful, incident-free next go-around. Different for me this time ...definitely as little caffeine as possible - 1/2 c around 3-4 a.m. just to try to avoid that caffeine withdrawal headache. The electrolytes are on stand-by. My first appt. with my onc since starting tomorrow also, I'll ask him about tryptophan supplements to help with my sleep deprivation. About the wig, there doesn't seem to be anything to loosen. I'm thinking about cutting that outer tight band, I hope I don't ruin the integrity. This Rod Stewart look is so me
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Just got home from my 2nd Taxotere and Cytoxan infuse. Doing okay....
As for the hair thing....for years I have said "I just want to shave it off and start anew." From bad cuts and bad foils....fixing it, paying the big bucks for it to look great....and now here I am....a new start to new hair....I keep thinking about what I will do for a style...will I color it again? Will I do this? Will I do that? I am done crying over what I do not have and am looking with glee to what I can have.......a new hairdo.....all fresh and clean....a new me......
Peace to all...........
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I just arrived home after having my new "hair" styled. I was pleasantly surprised at how much my new hair looks like my real hair. I haven't started losing my hair yet but it should be any day now from what my onc tells me. Anyhow, I've said this before, I'm losing my hair but saving my life!!! Hope that helps a bit.
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I'm sorry to everyone who has lost their hair recently. Even if we are not vain people, our hair is such a part of who we are that it's hard to see it just fall out. I'm trying to prepare myself for it to happen to me, but I don't know if one truly can prepare for that.
teemee -- your first tx was 2 days ahead of mine so I guess my hair will start coming out soon. You know what your description reminds me of is the horses shedding in the spring. Some horses get super long and thick hair in the winter, and theirs will come off in huge clumps if you barely pull. (Other horses' hair flies off a few bits at a time when you brush it.)
LillyC -- Yes, I too had shortness of breath. I'm going to ask my onc & nurse about it. I'm about 11 days out now and it's not so bad now but the first week it definitely was.
And just to throw this out there too, I'm another one who had great results with Claritin preventing bone pain. I had some, but it was pretty mild and very tolerable. (I also took Ibuprofen so I think that helped.) I started taking the Claritin the day before chemo ,so 2 days before the Neulasta. I've actually stayed on it because I think it is helping my allergies from all the blooming plants and flowers.
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Ana1973: I had my 2nd Taxotere and Cytoxan last Monday. I had terrible bone pain from the Neulasta 5 days after my 1st tx that was not relieved at all by extra strenght Tylenol. I was ready to take Lortab if it recurred this time. My onc said to try 2 Advil first, as long as I took them with food.
I have to say that my SE's were less this time, probably because I now have pills for everything and I wasn't reluctant to take them. I was very jittery through Friday but it didn't interfere with any plans.( I only get the Decadron on the day of treatment so I don't think that was the cause). The bone pain was very mild and started on day 3 this time, continued sporadically through the weekend, but definitely controlled with the Advil. I'm still a bit weak today, thought that would be gone by now. But I was able to watch my 10 mo old granddaughter so that was a bright spot.
A caveat about wig wearing, don't wear it when using your oven.I was warned by two stylists that doing so can ruin your wig. I did take advantage of that for Easter dinner. I let my kids take over in the kitchen.
Good luck to all having treatments this week!!!
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JLLG and hmh23 ----- I love the way you are looking at the hair thing, a new start and saving my life!
A friend told me yesterday and another today that I have to think of chemo as my friend and not a bad thing...that it is my insurance and a good thing. I can't say that is my friend, but it is a good thing for me and it is my insurance. So I guess it can be my friend until the end of May!
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Charley, SJG05 ,hereandnow, Dublin I too have TE and have finally stopped feeling like an iron bra. My fills are going slow since I will have them a year and my incinsions are healing slowly. Still have major scabs. will ask on thurs if this is normal. I am 6 weeks postsurg. I cannot have them replaced until I am done with radiation and the Trial i am participating in. I have found a bra by Warners called the Invisible Bliss style #2055 that is pretty comfortable. No underwire- which was hurting me. I feel more comfortable when I go out in a bra. Bought it in Kohls. But most of the time I have been wearing my post mast. cami's so I can put in my puffs. but it's very lumpy and too many seams. Was ok with sweaters but weather is getting warm now. Went out today with just a nice cami on and no puffs. Was really hot today. Bought the v-neck cami type thing in Target. Very comfortable. My husband noticed right away as we met at my son's lacrosse game. He said congratulations for going au natural, no puffs. I go on Thursday for my next fill. Does anyone elses muscles tighten up when sleeping? My get really tight and I don't know why.
Les- your post broke my heart. I know it would be much harder for me to watch my husband go through this. But you are doing a great job. We all get tired of it. And you have us to vent to. Just as we rant on here. I want things to go back to the way they were too. And they will, we just have to keep trudging forward.
Ana - becareful with the percocet- it can make you constipated.
Wishing all a peaceful night!!
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Hugs to all who have lost their hair recently!! I am trying to prepare for that day, I know it will be a tough one.
Kayne, Charley, Hereandnow, and Dublin--Hope I did not miss anyone? I am glad to hear I am not alone in the awesome land of tissue expansion,lol. As far as my fills, I was going every week and only having 20-30 cc each time, but took a break for a couple weeks after my port placement (figured I tortured my body enough that week). I believe I had 150 cc's at the time of surgery and am currently sitting at 225 cc's. I am due for a fill on Thursday and will see how I look after that:) I was a barely there gal before so I have already surpassed my original size. I am shooting for a full B, small C (will do silicone)-- I figure if I am going to be uncomfortable I might as well go for gold, right? As of now, I lost that Iron Bra feeling and have been able to sleep in my bed on my side--it is wonderful:) As for my incision, it is healed nicely--Kayne, I am post-op 6 weeks too, but my scabs feel off a bit ago. A little tip for skin healing that I was given--Take Vitamin E capsules, break them open and spread on your skin (only if healed)--it helps minimize scarring and helps with the stretching:) As for bras, I still wear sports bras-they feel comfy and I haven't ventured out to buy new bras yet. Good Luck girls on the fills this week, may they be painless!
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Ana1973 - I completed TX#2 TC last Wednesday...SEs not really any different from the first time around (not to this point anyway)...I did have some aches after the neulasta shot last time and again this time but taking Claritin per oncs direction...I have continued exercising throughout especially on good days but even this past weekend took an hour long walk and ran 2 1/2 miles today....be prepared with meds and react as necessary to alleviate discomfort but also keep in mind in a few days, you will start feeling "normal" again...stay positive and pain free!!!
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Hello all, I just got back from a Look Good Feel Better program. What fun and free makeup too! If you all have a chance to go to one, you should go. It was great to relax with other ladies going through the same thing and get makeup tips, lessons on scarf tying, etc.
Kanye, SGJ05, Hereandnow, Dublin - bras?? Right after the drain removal the PS advised I wear a sports bra for a short period of time for compression but I have not been wearing one for weeks! I have been wearing camis. Isn't that was one of the perks of getting these new boobs? No bra! Are you allgetting a different story from your PSs? At work I generally wear a cami (Got a bunch at Kohl's in different colors) underneath a button up shirt, cardigan or jacket ... camouflages the strange shape. I'm now at 500 hugely surpassing what I was presurgery. (I've had fills every 2 weeks generally a day or two before my chemo when I'm not in nadir)
Elle40 - I am totally jealous! I have not been able to run since before surgery. I tried once right before #2 and only made it 1 1/2 miles before pooping out. I've been walking but its not the same ...
Going in for #3 tomorrow! Halfway done and one step closer to the running trail! ;-)
Hugs to all, Charley
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First night of wearing my new wig - Had my daughter's in-laws over for a family dinner as they are visiting from England. It was great fun to all be together, but had to laugh when I got up to serve desert and my daughter immediately jumped up to help. Once in the kitchen, she adjusted my wig. Evidently it had started crawling up my head and as she put it, "my forehead was growing". Rather than being upset, it gave us all a good laugh! The stylist that I bought the wig from suggested that I buy a gel band from TLC to keep this very thing from happening. Guess I'll order it tomorrow!
Tomorrow is TX#2. While I'm not looking forward to it, I am excited to be halfway through my four treatments.
Hope all my March sisters are doing well. I love hearing from each of you and seeing how we can help each other through this. My love to you all....
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I can't believe how fast this last infusion time has gone. I go for #3 next Wednesday already. As for SEs -- the same as the first. My onc nurse said if they were the same, then that is what they would be. And it was easier knowing what to expect -- I knew what I needed to take and how to manage better than the last time. And the prilosec has helped a bunch as well.
As for the hair. Well. I knew it was coming. I just wasn't prepared for how ugly it looks. I feel like a dog with mange -- you know -- where it is coming off in patches and you don't want to get near them for fear you'll catch something. That's how I look. I can't even look at myself. And my scalp is so tender I couldn't razor it last night. So I rubbed with a washcloth this morning and got more off. Once it all comes off it will feel better. This in-between is awful.
LillyC - I actually don't mind my wig at all. I started wearing it on the first day of my new job and have been wearing it every day to work. The first couple of days were hardest. I am conscious of it every minute. But it doesn't bother me much. It feels like it is riding up, but that is just the way it is made so it moves with your neck and scalp. I tried a scarf last Friday and felt much more conscipuous at work. I've been going topless evenings and weekends, but will now do hats and scarves.
And shortness of breath. Yes. I was walking 4 miles a day and all of a sudden noticed shortness of breath going up a small hill. Strange. I also have noticed my nose gets very stuffy. With no nose hairs, it runs all the time. But now I get blood clots -- no actual bloody nose, but I have clots on my tissues when I blow and they then clog up. What fun.
Oh well. If that's the worst of it, I can manage to june!
Happy 2nd rounds to all!
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Elle40, Kayne and Baileyjm39...Thank you for the info. It sure does help to know that I can expect similar SE. I hate surprises. I'm not looking forward to the bone pain I experienced last time, but now have some meds that I hope will help. I also got some Claritin after all the wonderful things I have heard, I just hope it works for me too. Kayne- Senekot S is also in my med arsenal
It sounds as if several of us are getting our Tx tomorrow. I will be thinking of each one of you and praying for the best for all my March sisters!
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Good luck all going in for number 2, I'm in the chair in 2 days, feeling a bit apprehensive because I feel so "normal" now, well you know what I mean - Frosty, I too am starting to feel mangy - will be going in for a buzz any day now. I have read that people use a lint roller to get those last hairs out, although I'm not sure where I've even seen one of those. One more weird thing -lint rolling my head.
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Lilly, thanks for the heads up on the gel band from TLC, I'll check it out. Mine rides up in the back, how amusing! Love hearing from you too! Good luck, Marchers, hope all goes well this week.
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Charley, SGJ05 and Hereandnow,
I found a Jockey sports bar at Kohls on line that is working for me. It comes in sizes so no "cup" to worry about. It looks like a bra and is comfortable, hooks in the back. I went yesterday to the PS, I was holding a little fluid on the left side. He drained it and said do you want another fills, sure why not. So I got my second fill. The left side looks different then the right, not by much but a little, he told me no worries he will even it out and they will look beautiful. So I am not going to worry. I have seen the photos of his work and he is one of the best in the state from what I understand, read and have been told by several friends who are in the medical profession in my community. So I will trust in him.
RUNNING....OK, I am totally impressed! I have not ran since before my surgery and I have been reluctant to try...Maybe I will have to on the days that I feel good. I go for #2 of 4 next week.Hope everyone is doing well and remember FORWARD and TEMPORARY!
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hi ladies
here goes for round two of chemo wish me luck xxxxx
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Good Luck Today Allison, may your infusion go quickly and your side effects be minimal!!!
Ana1973--I had my first Neulasta shot last Friday and have had no bone pain:) I started Claritin the day before chemo. and am continuing to take it through day 10 (I believe the Nurse said bone pain can peak at day 10). So far, so good:) I hope it works for you too!!!! I also used Senokot S and I did not have any brick issues, if you know what I mean.
Frosty--I cannot believe you are going in for #3 already? Almost half way there:) I have been following your posts since your treatment plan is identical to mine--thanks for posting about your experience, you have helped me out tons. Glad to hear the Prilosec worked for you. I have been in an insane battle with heartburn and Prilosec is my last option--I hope it works for me too!
Good Luck to all that are going in for your treatments today!!!!!
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Hi Alison - good luck today - you are on the same plan as me - FEC x 3 then taxotere x 3, and you're 2 days ahead of me. I hope you go through this time with minimal side effects.
My hair started falling around me today and clogging up the bath - it's such a freaky milestone hey? I'm wearing a soft flanelette sleeping cap that I got from headcovers.com -so it catches the hair overnight.
thinking of you all.
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My first chemo was 3/22 and right on schedule yesterday (day 15) my remaining hair started falling out. I had my hair buzz cut last week so I wouldn't have to watch it happen but I don't think she took enough off so I am going back in today for the "Howie Mandel" look. Even with the little I have left the pillow was covered in little hairs last night after I made my husband rub my head for about an hour and I don't feel like dealing with hairs in my mouth all night so off the rest goes!
The good news about all this is that I love my 2 wigs. My hair has always been o.k. but not especially cooperative and it is so exciting to get up and just throw on one of the wigs and look like I just stepped out of the salon. Even after I get my hair back I may stay with the wig look.
I go in for my next chemo on Monday the 12th. I did really well through my first treatment thanks to the good meds and am much less anxious this time so am hopeful it will go as well as the first one.
Good luck to everybody dealing with the hair thing and subsequent chemo treatments.
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Hey everyone, sorry for being absent, just busy juggling work, kids and chemo. The SEs from the first round were rough: nausea and constipation, then diarrhea, later chills/flu-like symptoms compounded by a bad case of OM (oral mucositis). Started losing my hair on the 14th day after the first round, within 48 hours I had to shave it bald (it was that patchy, like a bad case of mange), same with the downstairs hair, only I didn't have to shave that section (LOL). I'm tolerating the second round of TCH much better. Seems I may be starting menopause, not sure, but period came on the 15th day of my cycle (I've never been off schedule before unless pregnant). So far, that's about it. I've been keeping a blog, feel free to stop by: www.allthatappears.com
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Hello Ladies,
Ah yes 3wks out from #2 and feeling almost normal - just in time for #3 (Tues.). Frosty1 - I to have the nose thing going - no bloody noses just the clots.
We had a great thunderstorm last night and things are started to look "bright", the snow is all gone and the birds are singing, the flowers and trees are budding, Spring has Sprung in the Adirondacks - YEA!!!!
My thoughts and prayers are with all my March Sisters - Hugs to Everyone. - Stacey
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Stacey and Frosty, count me in among those with the nose thing -- bloody, clots, runny, sensitive -- all due to loss of mucosa.
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Good morning marchers,
I'm one week post tx#2 and having trouble with reflux and heartburn that prilosec won't touch, even twice a day. Started a newer drug called Protonics and it seems to be doing the trick! Also have mouth sores - ick - but salt water seems to help a lot. Will see the onc nurse today when I go for PT.
Has anyone had trouble with port dependability? I'm having an x-ray today because mine just doesn't work all the time. A bit nervous that I'll have to have it replaced...
Thank you all for being there and sharing. I feel like you are close by; wish I could invite you all over for smoothies on the deck this weekend! We could laugh and cry together. In some ways we are closer than our closest friends at the moment!
xxoo Sandie
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Alison, you're in my thoughts as you go into round two. Wishing you the best, and no, or in the least very few, side effects.
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