Starting Chemo in December 2013
Comments
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Kimmie, they should have told you. But I agree if it was a concern they would have told you. I know it's hard try not to worry about it.
Leealice, you do NOT look like an old man. You look beautiful!
RHGSR, that is so sweet!
I started to get stubble when I started Taxol. I asked my MO if it was my hair and she told me it wasn't the hair I wanted. So I shaved it. Yesterday I noticed the white hairs sprouting up again. So I shaved it again today. I'll probably do one more shave when I'm done with Taxol (27 days) so the good stuff can start coming in.
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Welcome Kat!
Leealice, great photo!
Holli, what a nice gesture!
I think I am getting some stubble in places, but my hair is already white/gray...why is it "hair you don't want"? I know one thing-I am tired of waiting for it to come in, whatever it is going to be! It could be blue and I really wouldn't care!:).
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Leealice, you look pretty with or without the wig. Without...you scream gorgeous. All of you women do. It's almost as if your inner light shines through. It's like, we're suppose to be bald. Like we are sharing some sort of inner secret. I wish I felt that way, but it's easier look at others and feel that way. I have seen it in my sister's and husband's eyes. Unless we are told often, we tend to forget. Okay, I woke up this morning and decided I was going to change. I found a 15 minute yoga morning class for people with arthritis on youtube. I did that. Then I had my spinach, blueberry smoothie. Then I made my lemon/apple cider vinegar/ cayen pepper water. Then I did 17 minutes on the exercise bike. That is the equivalent to 5 miles. I could barely stand when I got off the bike. I felt so good after though. All day. Then I went outside to watch the sunset and couldn't get a full breath. I so want to get stronger, but I'm guessing it won't happen overnight.
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I have the white fuzz on my head too! Everyone's photos are truly amazing!!
My MO will only be checking tumor markers, no scans...I asked. I think I will be getting echocardiograms every few months due to the Herceptin.
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Hi all you bald and beautiful ladies -
My son had a track meet this morning, so went to bed early last night. Home now and catching up on your posts.
Mikesgirl - I read your post and am sending a hug your way. God bless the men in our lives, for they tend to have a knack for saying the wrong things at the wrong times.
People have been asking what kind of tests I will have after rads to make sure that I am cancer free. On my last appointment with my MO she told me that they do blood work, but unless there is a problem they would not do more scans. What are you all hearing?
Kimmie - I would like to believe that your MO really must think that there is nothing to worry about. I agree that it was wrong of her to not tell you about this back when you had the scan. I also think that it is wrong that she is expecting you to wait until fall and not be stressed out about this. Have you met with your RO yet? They should have access to the scan, getting a second opinion will hopefully give you peace about this. Your photo shoot sounds fun. I hope your dad gets better and stronger every day.
Jackieak - Thanks for sharing the advice from your friend about the scans. That makes me feel better.
RHGSR - What a wonderful group of people from your church.
Kat5856 - Welcome. Congrats on finishing up on Taxol. Hoping for a good outcome re the cyst, keep us posted.
I want to share how my first appt. with the RO went. First, he had reviewed my tests, scans, etc. so he went over all that with me. He talked about the rads, se's, duration, and so on. He did say that the radiation these days causes minimal risks to our hearts. He gave me a breast exam looking for lumps. Who would of thought that an RO would do a breast exam? Next step, meet with PS and have my TE deflated some for the rads and then CT Scan. Who has had a CT Scan? Forgot to ask if they just scan one area or your entire body? Never had one before.
Kim
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I'm getting the same Kim, basically every 6 mos. I see my oncol. for an exam. They'll do bloodwork but no scans unless I'm symptomatic.
Leealice, the book was good, Surviving a Triple Negative BC, Patricia Prijatel. She provides good information, and it's not all doom & gloom. I recommend it. She has a blog too , positives about negative.
Mikesgirl, good for you! Exercise is key, I was feeling good, getting back to exercising, now I'm back on the couch from my surgery Friday! Aargh, so sick of feeling shitty!
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Mikesgirl, Good for you!!!!! It really does so much to make you feel better. It will take a few weeks to start noticing that you feel better and a month to make it a habit. You can do it!! I have had to modify my workouts as I've gone through chemo but I haven't stopped. I started yoga a few weeks ago and Monday I start laps in the Community Pool. It will be a good cardio workout and there will be no impact on my feet. I hate neuropathy! Had to get permission from my MO since it's a public pool. I just have to wait a few days after chemo for my port puncture to heal. I will be rooting for you!
Robin, We have to get echocardiograms every 12 weeks on the Herceptin
I didn't have any CT scans. Are we supposed to? I had an MRI with dye, and they just did my breast area and lymph nodes for indication of spreading. There was none, phew. On Tuesday in preparation for my Lumpectomy I have an ultrasound and a sonogram. Fingers crossed the little bugger is gone, last time it shrunk to 7mmx8mm and that was the beginning of January. I will have to have a sonogram of the area every 6 months for I don't know how long...the rest of my life or a few years...hmmm good question to ask on Tuesday.
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question ladies:). When you did AC, didn't leg muscles ache? I have had sore legs since taxol #12 and now 3 weeks later they still hurt. My calves especially!! It feels like I need a deep tissue massage, but there is no way I could handle that. It did start at the end of taxol, but I was wondering if this happened during AC too? Also. I think the mouth sores are coming now:( they did give me a mouthwash and I have already filled. Guess i should have been doing that everyday? Not just if you get a sore? Clueless lol!
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I had a ct scan back when I was diagnosed, they checked lungs liver etc, basically upper chest. Also had the full bone scan, all was clear.. except the speck they failed to mention. Im going on their word that they aren't too concerned, but I may push for a recheck, I will drive myself nuts.
Jodi - hey girl I didn't have much pain with AC just felt like shit for a few days. wonder if its the lingering effects of the Taxol, you had a lot.
mouth sores yes, more of a sensitivity for me, I used the mouth wash a couple of times.
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I had a bone scan and chest CT and MRI prior to surgery. I was told the chest and bones were the first place breast cancer would met to. My hubby fought for a PET. I was able to get one about mid AC and it was clear as far as I know.
Jodi - I would tend to agree with previous post that maybe it's lingering Taxol? But I would double check with your MO.
Mouth sores - I use biotene toothpaste and mouthwash (they also make a gum). I also rinse with a baking soda/salt mixture.
Ugh - started feeling bad last night. Sinus drainage, congestion, cough. I feel awful. Praying it will clear up. I had to postpone first Taxol by a week due to a sinus/ear infection. I DO NOT want to postpone #2!!!
Holli
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NeSkir99 - Nice to hear from you. I am glad that you are are finishing up with your treatment and at the PS portion of it. I will have to wait at least 6 mos after rads for PS. I just want both my boobs the same size, tired of wearing a prosthetic. Hope you have an easy and speedy recovery.
Jodi - My legs still hurt. I was told from my MO and RO that side effects from the Taxol can show up a month after the chemo. I didn't have mouth sores, but think that my using biotene the entire time might have prevented them.
Holli - Hope you feel better. Are you on douse dense Taxol?
Kim
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I had a bone scan and CT before chemo, the first MO I met would not recommend doing one, my 2nd opinion one did. One of the reasons I stayed with 2nd one, but also she was more caring and real to me. I had MRI after my initial biopsy when CA found due to seeing cysts in left breasts, they came back benign, but also my decision then to do BMX.
I had mouth sores during AC each time, best thing that worked for me was apple cider vinegar rinse and applying vitamin E oil directly on the sores, my MO gave me that tip and it worked great.
I see the white fuzz hairs on side of my face and chin area as well, so I know it's not real hair...can't shave that but assume it will go away when chemo done. I'm probably the only one that sees it, but I will also shave the head again when taxol done, and take the biotin vitamins religiously. I know people talk about Nioxin for the scalp, I will when I get hair, but for now I believe the inside cells needs to get a boost! My PS said to wait on Latiesse as well until chemo over. I see her Wed, I'm wanting her to do an upper blepharoplasty on my lids while I'm out for my perm implant surgery...I've wanted this before BC and see it's even worse now, so I'm hoping to recover from both at the same time...we will see!
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Kim- yes I'm on dose dense
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for latisse! A nurse told me that it works for eye brows too! Interesting huh!
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ok! Starting the reconstruction topic! Anyone know what is going to happen with them? My doctor said most likely back shoulder flap because of rads on right breast. But, I would much rather the extra come from my tummy where I have had three kids. Dr said not big enough, but in NOLA they do it and are considered the top. I think I might head down 4 hours for a second opinion. Anyone have thoughts on what we will be getting down the road!
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Jodi - I had DIEP (where they use the tummy) reconstruction. Very very pleased with it. Head over to the DIEP 2013 boards. Those ladies are incredible and I believe a couple had their procedures at NOLA. They may be able to help you.
They did my recon at the same time as my BMX because they were certain I did not have node involvement. Let's just say everyone was surprised once they got "in there" and found the positive nodes and also another tumor and more. Ha ha... Not the way I would have liked to surprise anyone :0)
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No recon here. Uni for life!!
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I'm doing the new gummy bear shaped implants, they were so soft and not round like other ones, more drooped like a natural breast. I will have to wait at least six months after that for the right nipple tattoo, I have nipple sparing on my left, so hope it can be best matched on the right as well. Not that anyone will ever see it, other than my guy and me...but for me I need them there. Just wanted my Bs back, nothing more for me, I need my work blouses and clothes to fit....I have about 15 pounds to lose again as well!
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Jackie- that is exactly what I am suppose to get too! But, doctor said latimmis flap most likely due to rads. I just don't know about that part:(.
Pro- scar in the back and I won't see it a lot.
Con- scar on the back lol! Could hinder muscle movement:(
I want if needed the tummy flap instead. Con there is a big scar you will see everyday. There is no win unless my skin can hold through rads and reconstruction! Here's hoping!!
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DJJ, do you get the Neulasta shot? I've been swimming in a public pool since the beginning of chemo & my doc says it's OK. Never has said anything about waiting for the chemo puncture to heal. I do notice that sometimes after swimming (which I usually do on day after chemo or same day of an H-only infusion) the port area feels a bit sore. But haven't had any problems.
Mikesgirl, you go girl with the exercise!
For those with mouth sores, don't beat yourself up about having been able to prevent them with the mouthwash. I've gotten the sores and thrush in varying degrees each time. I've tried Biotene, Mary's Magic Mouthwash, Mary's Magic minus the lidocaine (the lidocaine made me gag), and something called GelClair. I also iced my mouth during the Taxotere infusion. Nothing has prevented the nasty burnt mouth. I guess if I hadn't have done all of this, might be even worse? But I'm afraid if you are prone to this stuff, you just get it and nothing will prevent.
#5 Chemo is really kicking my butt. I didn't feel much of a bounce-back in energy after #4, but #5 is an entirely different degree of tired. I ache all over. From the moment I wake up, I feel like I climbed a mountain the day before. When truth is, I'm just barely making it out for short walks. Swimming I've cut down my workout by a third, and it wipes me out for the rest of the day. I was lucky, didn't feel this exhaustion with Chemos 1-3. I went skiing after #2, while in the 3rd week of the cycle. Wouldn't dream of going skiing now.
One more! . . . but I can see how "getting back to normal" after chemo is all done is going to take a while.
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At oncologist office. I have a fever of 100.1. Not high enough to be admitted but combined with my heart rate of 150 ... I'm still here. They took blood to check my levels and I'm currently back in the chemo room getting a liter of fluids while we wait for the labs to come back. Praying the fluids will help me feel better and I can go home on antibiotics. Really not interested in a hospital stay again.
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Holli , hope by now that you are home and feeling better.
I am dealing with more neuropathy in my legs but so far it is tolerable so I do not want to stop or reduce the taxol. Rather kill all those little beasties hiding out on my body even if I have numb feet. At least they are not painful and I am not havng difficulty walking.
Barbara
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oranje mama. Hang in there.
Sorry to hear your fatigue is getting so much worse. It is a cumulative thing with the taxanes. Also I think we are just getting tired of the continued assaults at our bodies. 38 days and counting for me.
Barbara
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after about 3 hours at MO office I got to go home. The fluids they infused lowered my heart rate and temp. My WBCs were elevated so they sent me home on antibiotics. I'm still scheduled to get DD Taxol #2 on Thursday.
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good to hear you are home. I will be thinking of you on Thurs while I get the taxol also. Are you getting neulasta with the DD Taxol?
Barbara
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Barbara
Yes to the Nuelasta. I go the day after the infusion to get the shot. I will be thinking of you on Thursday too!!
Holli
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Holli. So glad you got to go home & not to the hospital!
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Holli - What a rough day for you. Glad your home. Get plenty of rest.
Barbara - I am one of those who got the leg pain with the Taxol too. I started my bc yoga cd this morning. Wow, it felt good to stretch. I had my last chemo 11 days ago and although I still am dealing with SE's, I feel stronger and happier. Hang in there.
oranje mama - Did you say you have one more chemo than you are finished? Sorry you are feeling really tired right now. I guess I just gave into the tired and never attempted to workout. Now I am paying for it... boy are my thighs flabby.
I am now on a mission to lose 15 pounds.
Kim
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Holli, so glad your home.
Oranje_mama, No I don't get the neulasta shot with the weekly Taxol. I don't know why they want me to wait a few days with the port. My port area is always sore the day after chemo. It's also more tender after a workout. How much longer do we need these things?!?! !0 Months
The lower dose didn't help with my neuropathy. My feet hurt worse and my hands are more numb....grrrrrrrrr
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holli, I hope you are feeling better now. What a tough day.
Djj, I am sorry to hear the low dose didn't help. My nurse told me taking vitd3 may help with the neuropathy. Not sure if it will help you. Take care!
I feel some abdominal pain for a while and my liver enzymes are slightly higher. My doctor ordered CT scan this Friday. I am doing it at the same day as taxol. Maybe a little stretch, just tired of going to the appointments all the time. Well, almost there, we can do it! ...I hope.
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