Chemotherapy for Stage IV
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I'm sure Greg, the cute married nurse is afraid I will report him.. I saw his darling face visibly pale.
I won't, but will think of a way to get the scan technicians to review when and when not to use a port. I'll send an anonymous note to Suzie the receptionist.. she is cool.
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Well ladies Day 16 and my hair is still holding strong. Maybe I'll get to keep it after all?
Now that I've said that, it'll probably all be on my pillow tomorrow morning.
Our Plant Manager at work said if my hair went, he'd shave his legs. I'm holding him to that.
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Good luck on the scans everyone!
Side story this was my second diagnosis, so after my first chemo this time I just shaved my head. I wasn't going to watch it all fall out. However, my husband has beautiful hair, black, thick, and wavy but he wears it very short. I told him he wasn't allowed a hair cut until my treatments were done!
It got shoulder length and gorgeous. Then he started flipping his hair around (think prince charming in Shrek 2) and I told him it was time it went!
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Ann, will keep my fingers crossed for you! Teresa, can just see your DH flouncing his hair around. Thanks for the laugh! I've been more tired this week (post gemzar on Wednesday) and have slept a lot since the decadron wore off. I'm so glad my ONC had me skip a treatment so I could enjoy the Nashville trip!
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I love that story of your husband and his flippy hair!
My hair is holding strong. I do NOT want it to fall out but if it's going to, I wish it would hurry up. The uncertainty bugs me. I'm pathetic.
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Mine is falling out and like a slow torture. I have lost alot of hair along my face and I have a HUGE forehead right now. I started wearing bandanas with my hair showing out the back so I don't look so sickly. I hate this and don't want to shave it until I have to. The worst part is hair loss is not a common side effect of my chemo. Go figure....
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i made a huge mess.. refusing to believe my hair was actually falling out.. hairs everywhere. Gawd i hate being bald. - it is such a pain in the ***.
i just ordered another wig off of ebay in spite of my vow to never buy a wig off of ebay.. (there are none in town worth buying). Now that i wear a wig fairly constantly, i notice that they do wear out readily.
reminds me of a joke:
How many animals are there in a pair of panty hose?
On ass, 2 calves, 10 little piggies and lord knows how many hares.
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I'm dtill lurking... stilll can't type (neuropthy bad in hands) and vision is still coming back slowly, but I feeel 100% better thaen I did lasdt week... surely felt the life draining from me. PraIse gOD.. it may tak4e awhil4e, But i[LL be back. Got 2nd round of chemo and doc even recommended goin on Essiac (altrnative herbal) Glad to hear good news Mary!.... I'll be watching, but posting is very painful...
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Glad you are feeling better Karen! I know the feeling - when I was home after being hospitalized with c-diff I was so sick I didn't think I'd ever be well. I was bloated, couldn't walk, eat, no way could I do anything on the computer - it was horrible. But here I am and back to work and doing okay. Keep your eyes on the future, you WILL be back!
Edit: Hair still full on. But, it hurts!!!!
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My hair is also coming out by the minute - it looks like I'm wearing a sweater made of human hair! But I'm still not brave enough to shave it all off, not even to avoid having to clean up the trail of hair I'm leaving all over the house... Grrrrrrrrr! When will I grow a pair?!!
Apple - loved your joke!
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Apple, during my wig hunt, I found that the Raquel Welch wigs seemed the most comfortable. The store didn't have them in my pinhead size but they seemed very light compared to the others. So, if you see one of those you like on eBay, you might try it.
I bought a Jon Renau because they are in petite. Now I'm not sure I'll ever use it, which will be fine with me. Today is Day 17.
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Picked up my scans today. Lung mets are shrinking! YEAH!!! Got some new bone mets, but that's OK.
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wig companies are so frenchie
Peirre la hair deux
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oui oui
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After 12 weeks (9 weeks using scalp cooling) I have very little hair left
. I hacked about four inches off the length the other night when I came back from the pub in an attempt to get used to the shorter look but I think I'm going to end up shaving it all off. As Angelfalls and Apple mentioned, there's hair everywhere. I can't believe I had that much hair in the first place. I've got a couple of wigs, but I think I'm going to try out some head scarves for the summer. Really don't fancy wearing an itchy wig when it's hot and humid.Despite being given the choice to stop chemo and switch to hormonals, I'm continuing with session 13 tomorrow. It turns out that I'm harder than I thought!
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Karen - BIG HUGZ...glad you are feeling better, but still worry for you. Hope you'll continue to beat this RB back and post more soon!!
You ladies are funny with your hair stories...good lock...I mean good luck...teehee...with the wig hunts. I shaved my head last June when my hair started falling out. My DH went with me and had his head shaved too. I bought a wig, had it shaped, wore it twice. Too hot and plus with the hormonals I was hot flashing soo much and soo severly, it was easier for me just to wear a hat, which I would promptly pull off during a 'flash' then put back on when it was over.
Apple - LOL bout the animals in the panty hose!!
Love n prayers to all you lovely ladies!
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Hi
Just wanted wish you all well and say I'm praying for everyone. Have to keep this short as my arm is so swollen I can't type..so hen pecking with the other one. I have scans next week and have some ideas they aren't going to be great. My two fluid masses have grown..they don't want to disturb them till I can't stand it anymore. We are about there..the one on my right rib cage makes it so hard to breathe. Gotta love the little things in life like air
still on the abraxane ..not sure what they will do on Monday. I think she will change it but haven't had the strength to look into what will be next. Any ideas? I have been keeping up with you gals and praying for you all!
Karen you are an inspiration. Cool ..almost three months on abraxane and my hair is coming in..very white ..kind of shocking but I have a fill head of peach fuzz.
Stay strong everyone! Hugs to all0 -
Usafmom, I found Abraxane to be rough....so rough I quit it after 22 treatments. I lost my hair after about 23 days on it and it did start growing back before I was off it....sort of strange colorless stuff like celuloid, from there went to white and eventually a silver gray which I really liked. I now just have a very sparce coating of very thin hairs after being on Adriamycin since Dec.7, low dose weekly treatments. At this point in my life, the hair is no big deal. I have been walking around without anything covering my head unless I feel it necessary, like at work, and find it very liberating. I think people are nicer to me when I have not hair. I was prepared for stares and looks of pity and had decided I would ignore them, but instead people will get a shopping cart and bring it to me and ask if I need it or if I bump into someone, even if it is my fault, they will go Oh excuse me and get out of my way. I had gotten to the point where I was finding people to be really rude in every day situations, crowding in front of others in line, walking in front of you, things like that, so this change is actually quite refreshing. If this is playing the Big C card, I am going to do it......think we deserve all the perks we can get. I remember the lst time my hair came out, I saved it in plastic bags....why? I don't know. Might go back to my mom having us put out cut hair out for the birds to take for their nest building. I just know it's always a mess....hair hair everywhere, but I have never shaved it off since my hairdresser said not to.....cut really short, even a buzz, yes, but not to shave totally.....so I never have. I have not lost my eyebrows or eyelashes so onco thinks I won't at this point. I really want to lose my arm hair, but wouldn't you know it's not going anywhere. So just scalp and pubic area seems to have been hit with this one.....Abraxane, I lost it all. Halaven was half hair and that was worse than going bald in my opinion.
Go for my treatment this morning and then work this afternoon. I am thinking today it will be about time for the CA27.29 again and am hoping the numbers are still going down. Last time which was almost a month ago they were 2,373.....a huge drop from the 7,668 we started at. Monday I am to have a Muga scan to check and see how the heart is holding up with Adriamycin and my onco said as long as there is no damage and no progression, we will just continue with the weekly Adriamycin which is fine with me. I was really scared about this treatment since I had heard horror stories about it and knew how sick my one friend got when she was on it. I have had no nausea, no neuropathy and it doesnt make my eyes water like the Abraxane did. It is playing havoc with my nails and that is not a normal SE, but that is typical for me and my hands still work, just look like they should be on an alien. The feet....forget it.....my career as a sandle model is over....have about two toenails left and they are infested with fungus. I do not think I would be welcome at a public pool.
Karen, Glad to hear things are improving.
Skidoo, Congrats on the scans.
Coolbreeze, Hope your hair continues to hang on.
To all of you who hate wearing wigs, I completely agree and every time I have bought one it has been a waste of money .....but I have given them to someone who likes them so guess it was not a total waste.
One thing I found out they were not kidding about.....chemo and sun don't mix.....I do so love to be tan, but now am dealing with a bad rash where I got burned so am expecting a lecture when I go in today.
Have a good day everyone. It's been a beautiful Spring in OH.....Iris and hostas and ferns are in full force right now..my bleeding heart even came back this year and clematis is looking good. I always find it exciting to see what's come back. Marybe
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I got my scan results this morning. The onc is pleased-I am less so. Some shrank and had less intensity others grew and some new spots showed up. First time that has happened to me. I have been dealing with some of the same spots since the beginning. Liver is still clean and the biggest one in my throat also shrunk the most-thta made me feel better. So not Stable but not bad either.
So, we will continue on the X and tykerb til the next scan. I am taking a chemo break in May-I had told him regardless of the results I need it. I am going on a fab girlfriend Vac at the end of May and I want to hang out in the sun and swim in the ocean and eat gobs of good food without worrying where every bathroom in Cape Coral is...He is totally OK with it.
I worried myself sick over this scan because the Jan one was my fisrt bad one. Going to try not to get so caught up when the next 1 comes. Easier said than done i know.
I know there are other ladies scanning this week or wating for results. Hoping for the best for you!!.
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33skidoo
Shrinking lung mets sounds great to me! Congrats!
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lilylady
like I said to 33skidoo; shrinkage is great.
If onc is pleased,go with it. Besides,your liver is clean-that is good news.
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Mary I love to tan too. I have one tan left on my tanning bed package. I bought it when I thought I wouldn't be doing chemo for a while. Now I am on Abraxane and need to use it. I'm a bit nervous but I look a lot healthier with a bit of color. We'll see what happens!
All hair hanging in, this is Day 21.
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Home from my second dose of Abraxane. I can make it there and back like many of you thought. But to those of you who had the Abraxane stopped for lunch and then went to work , I must say that you are stronger than me . I made it home to my couch .
I'm also very happy to read that Cool Breeze still has her hair. I'm hoping!
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LilyLady, I was just thinking about you the other day.....have my doubts that the Cincinnati group will get together again since everyone seems to be so busy. I think it is GREAT they your liver is clear and that the big tumor in your throat has shrunk, but I know what you mean about being disappointed. I thought surely my scans would show shrinkage, but it just wasn't in the cards. Being positive is good, but I think sometimes we expect too much....know I do.
Maybe you two on Abraxane won't lose your hair......as I said there was this old and I mean like in her mid 80's and she had been on it forever and did not lose her hair. Before mine came out, I remember the wind blowing on day on my hair and it hurt....the wind blowing on my scalp actually hurt it.
I am thinking maybe I need to ditch the bandanna at work....today this patient asked me if I was Egyptian.....but it was right after I said Hello, my name is Marybe, I am one of the hygienists....perhaps Marybe sounded like an Egyptian name to her. Anyway, it made me laugh.
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LilyLady, I was just thinking about you the other day.....have my doubts that the Cincinnati group will get together again since everyone seems to be so busy. I think it is GREAT they your liver is clear and that the big tumor in your throat has shrunk, but I know what you mean about being disappointed. I thought surely my scans would show shrinkage, but it just wasn't in the cards. Being positive is good, but I think sometimes we expect too much....know I do.
Maybe you two on Abraxane won't lose your hair......as I said there was this old and I mean like in her mid 80's and she had been on it forever and did not lose her hair. Before mine came out, I remember the wind blowing on day on my hair and it hurt....the wind blowing on my scalp actually hurt it.
I am thinking maybe I need to ditch the bandanna at work....today this patient asked me if I was Egyptian.....but it was right after I said Hello, my name is Marybe, I am one of the hygienists....perhaps Marybe sounded like an Egyptian name to her. Anyway, it made me laugh.
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Soleil, not stronger just different SEs. It's amazing how different we can each be with the SEs isn't it? I would gladly do Abraxane again - my only SEs were low platelets and funky nose (not really nose bleeds, but some blood when I blew my nose). And my hair was growing back (slowly) on Abraxane after losing it on AC.
Now, I am on Anastrozole and Xgeva and apparently I am having wierd SEs with the Xgeva (zometa before). Have extra bone GROWTH in my lower jaw and peripheral neuropathy in my mouth (hands and feet are fine though). Been going on and getting worse for months ( definitely not ONJ though). Oral surgeon is gonna try a steroid shot to see if that will help relieve the inflamed nerve. If not he may have to pull the tooth above the nerve ( he filed it down Monday so I don't bite down on it when I close my mouth - helps some but not a lot).
I'm ready for him to pull all my teeth if it will relieve the pain.0 -
33skiddoo and Lilylady, Congratulations! Shrinkage is always a good thing?
karen, great that you've improved soon much since last week. Keep it up!
Kimber, always good to hear from you! Will pray for you this week ... That the scanxiety doesn't hit you too hard. Always creates a little stress! Have you done gemzar?
Marybe, thanks for the timely reminder about sun and chemo. sisters, protect those shiny heads and the rest of your body, too!!
Reesie, omg, is there anything worse than tooth pain?? Hope you get relief soon!
I had my 2nd gemzar today and get neulasta tomorrow. Feeling pretty good. If only the decadron would let me get to sleep!
Love and hugs to all my chemo buddies. You are a very special bunch!0 -
Reesie, If it is the Xgeva causing the hypertrophy can you go back to zometa since you were doing OK with it. Also can they make an appliance for you to wear...either a bite guard or night guard that you only wear at night so you won't be grinding on the extruded tooth? Then maybe the steroid shot will calm it down. So sorry you have having these weird SEs.
Glenna, I got decadron today also which is why I am up.....just took the dogs out.....a special treat for them so they don't have to hold it til 7 AM
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That's what I;m talking about!! 10 more years and maybe we'll see an 80% cure!!
http://www.webmd.com/cancer/news/20120418/breast-cancer-study-could-change-treatment?src=RSS_PUBLICX
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Don't have much time ( or maybe I do when we look at the big picture, huh?) cuz I am on my lunch hour, but I just wanted to share my good news and tell you I think Adriamycin weekly dose is amazing. Got a call here at work this AM and they said it was Amanda and I said Amanda?...who is it, some patient I emailed re recall appts? and they said all she said was Amanda so I went to take the call , said, Hello,this is Marybe. It was Amanda, the PA from the onco's office. She said she had just walked into the lab and saw the results that had come in and she had some good news for me re my tumor markers and I said Really, I have made up my mind not to call because I was worried they would be up. Well, not so....they are now 1,507....that is an 800 drop from a month ago when they were 2,373!!!! So I am very very excited. Am flushed all over today and look like I am sunburned again, but I am always like this the day after I get my treatment, but big deal if it's working. I thanked her profusely for calling me. Anyway, gotta go, but wanted to share some good news. Hope springs eternal!!!!
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