August 2011 chemo, anyone w/ me?!
Comments
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Taylor, I've been trying to figure out the answer to the 12 weekly vs. 4 DD Taxol question for ages. I have no idea who gets one vs. the other or why.
RoBo47...not sure how I've managed to lose weight. I was holding pretty steady until the last couple of weeks. It's nice because I wouldn't mind losing a few pounds but it's worrisome because I hope nothing is wrong. I just keep telling myself it's thanks to my exercise program and new healthier eating habits!!
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Hi Robo47- I'm still miserable and emotional..lol..I have a good cry at least once a day!! I go for tx # 6 tomorrow then 2 more to go!!! I'm done Dec.6th...cannot wait! I know I miss my hair and my face is so fat and to top it off I broke out in hives on my cheeks and nose, I was out and I guess I didnt put enough sunscreen on. I'm looking so pretty..lol..
Michelle- When I go in for tx I'm going to ask what the difference is. I'm sure nothings wrong with the weight loss its the healthy eating and exercising.
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Hi All --It been a little bit since I checked in... I had my 3rd Taxol last Wed.. I felt better than #2, like you Michelleo, but I think thats b/c w/#2 I also got the flu shot and nuelasta --I was in so much pain! I still got the muscle/joimt pain, but not as bad --worst thing is my knee keeps giving out!
My 1st ONC wanted me to do chemo b/f surgery, w/12 Taxol (I think they were thinking breast conserving surg), but I decided on the BMX -I started chemo about 6 weeks after surg, and this ONC is doing 4DD Taxol --she sd there really isn't a difference (no results better than others), it's just a matter of preference of the ONC --she sd she wld do the x12, but of course I took the 4!! Maybe its the amount of time in the chair and the amount of drug??
My mouth has been very dry, and the doc told me to get the biotene mouthwash b/f she prescribed the miracle mouthwash....
I went back to my job today too just to do some PT work during their busy season and it was so nice to see everyone as well! Unfortunately, there are so many people I worked with that have been down this road so everyone is so supportive!
Schools are off tomorrow, so I am looking forward to a lazy day around the house!! have a good night everyone!
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Yay! I'm sooooo happy people are still following this thread. I was getting a little sad and was researching the July 2011 and September 2011 threads to see which one I should join. I will take notes and respond to other posts soon. I just wanted to say how happy I am that our little group of August ladies is still together : )
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I wish I understood the 12 doses vs. DD. I would love to not have to go in weekly. I researched weekly Taxol and found articles from April 2008 stating weekly Taxol was found to be more effective but I don't know if that has changed.Here's a link to one of the articles:
MaryJ: I'm sorry to hear about your neuropathy. I hope the Taxotere will be kinder to you. Did it start with the first round and get progressively worse? I started having the tingly fingers in my right hand today. I'm hoping it goes away.
Michelleo: I'm glad you had less pain this time and congrats on the weight loss. I'll bet it's the healthy eating and exercise. I also met my closest friends/coworkers several times in the five months I was out. It gave me something to look forward to and also helped me keep up with everything.
Taylor: I feel "better" on the taxol but I'm not going to lie. I got used to being a stay at home dog mom ha ha. I've been out five months and I had to get back so I could have some FMLA hours to last through January when I'm done with the Taxol. So now I'm on intermittent leave and working part time. It's going to take a while to adjust to working, resting, treatment, responsibilities at home, etc. Plus, I really miss going back to bed every morning after my husband left for work. Now, I'm out the door at 5:30 am and he's still in bed. Yuck.
Allformy4: Congrats on returning to work PT and enjoy your relaxing day tomorrow.
To everyone having treatment this week: Good Luck and may you have minimal or no SE's!
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Hi Ladies - good luck to everyone having treatment this week! I had #2 Taxol last week and thankfully my hands and feed are not burning this time around. They are still itchy and that's driving me nuts, but at least not burning. Just started to get a little tingling in the fingers as well. Does it get progressively worse or does it come and go?
Hugs to everyone!
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Jmull, I'm finding the neuropathy has increased following Taxol #3. My hands are still not too bad but my feet are very numb and tingly.
On the 12 weekly vs. 4 DD Taxol, a lot of the studies seem to compare 12 weekly vs. the standard 3-weekly regimen. It's hard to find comparisons of 12 weekly to 4 bi-weekly treatments.
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hi ladies! im on weekly Taxol 5/12 (#6 is tomorrow), and I have peach fuzz hair growing! It's very fine and white, but it's all over my head and definitely growing.
I also noticed I have some leg and underarm hair returning. The neuropathy this week has lasted longer than the previous weeks, so I do think it's getting worse each time.
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Hi - Great news cupcakies about your hair growth. I'm taking daily hair regrowth pictures to document its progress. Will post after it has been completed.
Take care!
Missey
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Waaah -- I had my last chemo 6 weeks ago and NO HAIR GROWTH. I wonder what the heck is wrong! But I'm happy for those whose hair has started to return
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I was holding the mirror up to my head to see if anything is there... there are 2 gray hairs standing straight up!! I did not have gray b/f, hope I don't come back with a lot!! But I guess if anything is going to make you gray, this is!! lol
I have been trying to get some answers on my reconstruction, I am not having too much luck w/other threads (and I am so partial to you ladies!
) I hd a BMX and have TE's in ....my docs want to do the exchange 1st, then radiation. I am nervous b/c I am already lopsided, and I am afraid of what the rads will do to the skin and if it will make that side tighter than the other --anyone?? -
Hello - Sorry to have been away so long. I just spent 18 days in the hospital with what started out as an infection around a tissue expander. Had a fever for 20 straight days, tissue expander removed. Had diarria (sp) the entire time and and stilll have it. Then I had kidney failure. After I got home I had to give myself IV's through my port for a week. October was not a fun month for me.
This is the warning I would like to give to anyone that is taking chemo and is also having expansions to tissue expanders, I really think that is where my infection came from. I have no way to prove it and my ps won't admit to it. I had and expansion (saline injected in the TE) on a Friday, Chemo (AC) on Monday. Started running a fever of over 101 Thursday night. Admitted to the hospital on Friday and was there for 18 days. Chemo delayed a month. Infected TE removed. If I had it to do all over again I would never do expansions during chemo.
I didn't write this to scare anyone but to make you think about the possible consequences. I wish someone had done this for me. I know that many people have no problems. I seem to be the exception to the rule.
4 AC treatments down 1 Taxol down (yesterday) and 3 more to go!
We are some brave women on here! We will get through this!
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Islandgirl --I am SO sorry to hear this!! Big {{{hugs}}} to you!. Infection has been my worst fear during all of this!! I have TE's, and I was so worried and paranoid (still am)--I finished my fills b/f chemo though. (they couldn't determine the site of the inf? If the PS didnt think it was the TE, why would he remove it?? hmmm) I have had a bladder inf and sinus inf and I was freaking over that! SO glad you are ok and home....you are almost there --the Taxol seems to be easier!
XOXOXO
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Just back from a Neulsta shot. I had already prepped with a Claritin, well I really took a generic Loratadine.Same thing.
Taylor...regarding the 4DD vs 12, he told me that my 'presentation' did not warrant the 4DD; in fact mine was going to be 6. Anyways, the DD is part of clinical trials and for one specific reason or other( I can't remember why), I was not eligible for a clinical trial.
Michelle...I'm glad to hear that you are able to lose. I am holding steady, but only because I'm usually watching it. I really do want to just eat frequently. My onc told me at the beginning that most women gain weight on bc treatment. In fact, he was bugging me yesterday about the fact that I normally don't exercise. He asked why and I told him that I just don't feel like it! Might as well be honest, right? I am making exercise one of my new goals.
Robo..I feel your pain. And I also feel fat, bald, and moody! LOL I've been bald since 8/19/11 and I still find it hard to look in a mirror. And I still cringe when my DH reaches to caress my hair in the dark and there's nothing there.
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Taylor...hope you're feeling better soon! {{{Hugs}}}
Allformy4...did the Biotene mouthwash help? I was thinking of getting some. Sorry I can't answer your exchange question.
TSB1...I'm glad we're a group! My onc also told me that he feels the patients on the 12 weekly Taxol tolerate the s/e better. I felt slight toe/finger tingling after the first dose. Very slowly increased, and then day 4 of my 4th weekly Taxol, it really intensified in my toes and balls of my feet. I figured he was just going to prescribe Neurontin, but he was concerned. He monitored it the next 2 weeks and it was only getting mildly worse. When he heard about my gait feeling off, he just switched me over. Taxotare drops the white count down, so I had to get a Neulasta shot. The Taxol can also, but it is not a given.
JMULL...my neuropathy is the first thing I think of when my feet hit the floor in the morning! It is a constant feeling for me. I am not dropping things, though.
Cupcakes...I still have no underarm hair, my eyebrows are only 1/4 in place, but I noticed some black chin hairs returning! WTH? Not right!!
Island girl...I'm so sorry to hear about all the misery you've been through. I hope you are feeling better soon and that you tolerate the Taxol allright. It's normally easier than the A/C.
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Once again I have done it, read all the posts and then when I go to respond I forget who said what, I think I definently have ADD, but from what I recall
Islandgirl. I am so sorry you have been so ill, I hope you are now recovering nicely,
allformy4 : I am very confused about reconstruction too, I was told they have to wait till rads are over before they do reconstruction due to skin changes and scar contrapture , but I dont really know I wish there was a good site to find out info on reconstruction I am clueless
Cupcakes: I am on round 5 of 6 taxatore and have already grown approx 1 inch of hair all over and about 2inchs at the base of my neck , I was scared at first thinking maybe the chemo is not working but was told some people just do, Im not complaining though.
Michello : I think your healthy eating is the reason you have lost weight although some people just lose on chemo and some gain , so dont think you need worry at all
Robo47/Taylor . I am with you one the misery thing I just hate how I look lately I just feel ugly all the time , miss my hair soooooooooo much, and really dispise putting the wig on I cant wait for the day I dont have to wear it , I will have a wig burning party!!!!!!!!
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Hey all--I've been "thread hopping" a bit, but I'm back. Despite the sharing of pain/frustration/SEs we do on this thread, it's also very hopeful and positive; everyone is so supportive. I have to admit that I got really depressed the other night reading through the HER+ thread; so many of the women are absolutely convinced their BC will recur. I can't think that way or I'll go crazy.
The hair thing: I never lost about 10% of my hair. Now it's about an inch long and, like allformy4's, very light and sticks straight up. Very attractive. I've heard that our hair will grow back a light mousy brown/gray until the cells that control our natural color "click" back on. Is that true? I can't wait till I have hair! I said to my DH the other day (and I almost meant it) that I'd go through 6 more rounds of chemo if only I could have my hair back. As soon as my hair is long enough to get an Ellen Degeneres hair-do I'm joining SummerGirl in the wig burning party! I'm throwing in all my scarves and caps too! I hate them! (Although I do have a tip for those of you going through chemo-pause with hot flashes--get one of those caps that football players wear under their helmets that wick the moisture away from your head. The one I got is from Under Armour. Great for sleeping. Maybe I won't burn that one.)
IslandGirl--glad you're back and on the mend! What a wild ride! Blessings to you!
Gals already doing rads--give us the scoop. What does it feel like? Any SEs?
May we all be at ease.
Deb
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DebinUtah - I had my first real rad treatment yesterday. It's a little strange lying there by yourself while the machine moves around you and makes noises, but you can't feel a thing. Hard to sit still. Last night my right breast felt warm - hot, but otherwise no s/e's yet.The rad people at my cancer center aren't nearly as informative as the chemo people were. I'm getting most of my info from here!
IslandGirl - I'm so sorry you've had such a hard time. Hope your feeling better.
Still feeling week from chemo, 26 days PFC. No real hair regrowth yet. I also still have 5-10% of it, and a line along the back of my head that never really fell out. A little white stubble coming in, but very thin, very white, and almost invisible.
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Robyn...I'm glad your first rads went well.
DebinUtah...I paln on looking into the headgear from Under Armour. I didn't know there was such a product.
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IslandGirl -- I am so sorry to hear of your illness. I pray you will be on the mend and in better health soon. How scary that must of been for you.
Waving hello to everyone! Rad treatment #7 tomorrow...I can't wait to get it over with.
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Hi Island Girl,
I am so sorry to hear about your situation. It is scary, and I hope everything gets better. I just had a similar situation. I had a bilateral masectomy in August of this year. 1 1/2 months later during my chemo treatments, my breast surgeon wanted to clear more margins, but did not give me a drain. I went in for bi weekly expansions during my chemo, but my right breast started opening up and pussing. There was a huge infection. My left breast was fine even though I had expansions on this side during chemo. Regardless, the plastic surgeon went in and "sewed" me back up and gave me antibiotics to counteract the infection. I then had a horrible allergic reaction to the antibiotics with hives all over my body and cystic lumps underneath my armpits. I had to discontinue the medication. I have also had drains in for 2 weeks. Regardless, I still stay positive and know that we are all going to come out of this stronger. I do think that the plastic surgeon needs to be very careful of expansions during chemo so as not to overexpand. There can be lots of complications since chemo kills good cells including good skin cells....so if one overexpands, one can conceivably burst some skin or tissue and your body will not be able to heal at the same rate as if you did not have chemo. I agree with you that tissue expanders and chemo combinaton can be tricky!
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Hi all. Island Girl and Frenchie Lover- my goodness. I hope that you are mending well, what a horrible experience you both went through!
DebinUtah and Robyn- I have had 5 RADs so far. I am doing my treatments in Rutland,which is about a 35 minute drive 1 way from my house. The town where I am in the process of reopening my shop is fortunately between my home and the hospital. So, I guess what I am trying to say is the logistics of getting oneself to the treatments daily is more significant than the actual treatment.
For my simulation/ set up appt, I laid down on what looked to be a blue bean bag of sorts. At some point one of the nurses let the air out of the bag so that it hardened in the shape of my back. I held my arms above my head while they tatooed tiny dots at the edge of my breast and did a CAT scan. My arms started to fall asleep, but the nurses were efficient and finished before I became too uncomfortable.
So, now when I go in for my treatments, my blue shape is there on the table. I assume " the position", arms clasped at the wrist above my head. I have about 15 secs of zapping on one side, and 10 secs on the other. I was having issues w/ the having to stay still part, but think that I have talked myself down. I am feeling alittle hot on my breast. That is it! The Rad room is surprisingly cuter than I expected. Little star-like lites all over the ceiling. Pretty wall of white light as you walk into the room. Oh, I close my eyes as soon as I lie down on the table and try to breathe calmly.
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Ellen - I have one of those blue forms too. But they didn't ask me to turn my head to the left until after they formed it, so first they make it fit, THEN they make me turn my head so that I don't fit! Ooops! The room is fairly pleasant, a couple of lit ceiling panels with trees on them, whatever music I request. I've got handles above my head to hold onto, that's the hard part. I lay on the table for about 12 minutes while the machine whirs around me, and have trouble bringing my arms down afterwards. One of the rad techs, the one I spend the most time with, is not the most pleasant girl in the world. Very young, maybe too full of herself. The nurse and secretary mentioned that they've had other complaints. I'll speak up to the doc next time I see him.
Today is number 3. I'm glad that I'm so close to my hospital. It takes me about 45 away from the house altogether every day. My breast has been hot too, but I've had no other S/Es so far. Skin is fine, except for the rash I've had since they took my port out on the 1st.
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Ellen & Robyn, thanks for the rads info. I have my final Taxol tx on Tuesday and then it will be on to rads for me. I hope I don't have to wait too long. My ONC said 3-6 weeks so I'll be starting some time next month.
Islandgirl and Frenchielover, good to hear from you. Sorry to hear you've had a tough time lately!
Debinutah and Summergirl, I'll be joining you at that wig burning party. Can't wait!!!!
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Robyn - Do you know why they have you turn your head? I'm not turning mine, so of course now I feel as though I am missing out on some technique! I almost started off on the wrong foot w/ my rad tech woman too. But, I decided that I had better chum her up, so I did alittle. She just doesn't seem thrilled to be doing her job. I am surprised that you are on the table so long. Are your arms up that whole time? I get into my mold, they mess around w/ getting me in the right position for a minute or so, they say "we'll be right back", walk out the door. Then the machine starts moving and I have 15 secs or so coming from the left, then 10 secs on the right. It is amazingly fast.
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Thanks, Ellen and Robyn for the rads info! I REALLY appreciate the details. What do they do during the cat scan? Is it like an MRI? I'm worried that the radiation will aggravate the scar from my lumpectomy--it's just barely starting to look a little less Frankenstein-ish.
I want to get another wig; anyone have a recommendation? The one I have now is very comfortable, but it's unstyled human hair and takes forever to do. I want something comfy, light, short and quick. Too much to ask?
Peaceful dreams to everyone.
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Islandgirl & Frenchielover- My goodness you have had a rough go of it! I am so sorry that you went through all that. Glad to hear you are on the mend. It's amazing all the crap we have to go through.
DebinUtah - I have a fun, short, comfy wig that is made by Noriko. The name of it is "Sky". I got the one with gradient coloring. Wigs.com is having a 25% off sale right now, too! It's a bit poofier than the picture.
I wanted to comment alot more about everyone's posts but I took a benedryl (hands and feet are now not only itching, but peeling) and am now getting sleepy.
Hugs to everyone!
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Hey ladies - haven't checked in...well..in FOREVER....I'm only 2 treatments away from DONEZO! YAY! This one wasn't so bad, but the one before that was AWFUL. This time I got a double dose of steroids (oh boy, puffy, bloated, hungry, and emotional!), but I did physically feel better. I'm one of the few doing neoadjuvant chemo, so I haven't had my BMX or TEs or anything yet. I'm scared as H-E-double hockey sticks. Looks like I'm getting a dorsi flap, TEs, etc. Google has not been my friend. It's scary. I wish I had it first so I didn't have this much time to think about how I'm going to be with the foobs....and looking like frankenstein. I know I will get through this and it will be great...and I will be HEALTHY....but it's still scary.
Islandgirl & Frenchielover - I'm so sorry you're having to go through so much B-S! HUGE HUGS TO YOU BOTH!
Ellen & Robyn - OOOO, thanks for letting us know about the rads! Yet another chapter in this story that none of us know anything about...but we'll become experts! lol Thanks for blazing the trail!
Ok, time to go night night......keeping the fingers crossed for minimal hot flashes!
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The CAT scan is to get an image to help w/ the radiation approach. No, it is more open and faster then an mri. It isn't diagnostic, just to help rad doc get his bearings. At least that is my understanding of it. They are also taking xrays (everytime? sometimes?) during the beaming session to double check that they are hitting where they want to. To be honest, I haven't asked as many questions w/ rads as I did w/ the chemo. I figure that there is a lot of math type stuff involved and I think that my RAD doc is competent, so..... I'm just doing what they tell me to do: stay still. So far, as I said the biggest challenge is not tensing up while I am staying still. I hear the beam come on and my insticts tell me to move away from it?!
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Good morning ladies,
I am really appreciating all the rads info that some of you are able to supply. Keep it coming! LOL
My onc switched me over to Taxotere from taxol and it's really kicking my keister!! One more and I'm done.
Meeting my newly diagnosed bc friend later, to go for her consultation visit with the RO. I barely remember mine. That was in July. Everything has been a blur since the bc diagnosis.
Have great days everyone!
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