Starting Chemo May 2016

Just a quick update after infusion number two, which was on Thursday 6/2. The only side effects I experienced this time was fatigue and nausea. The nausea is controlled by the Rx medications. The fatigue is hard to control. I felt very tired yesterday (Saturday). It was a tired I haven't experienced before. Today I feel better. Maybe like 75% normal. I forced myself to workout each day since infusion, as my doc says the only well documented way to fight fatigue is exercise. This is no fun but so far AC has been doable for me.

Hi ladies!  Sorry I'm coming to the group late...my big computer is upstairs and I have a hard time getting long posts done on my phone.  Joined the site a couple of weeks ago and just now was able to figure out how to get my diagnosis and treatment info into my siggy and now it is time to start work.  Will be back later when I can do a proper intro and read up on all your stories.  But I wanted to at least acknowledge I'm part of the group and be able to find you all again.  Oh, and I have my second infusion on Wed so may be posting/reading then.

anyone notice a burning smell after your hair fell out? I lost mine this past Sat and buzzed it short... I still have some left. Have washed it every day but have noticed a burnt hair smell... Almost like when you get a perm. Is that just the chemo?? I'm on TC treatment

I noticed an acrid smell, like a smell of death or a homeless person but while my hair was falling out. At that time, my hair wasn`t my usual hair. When I washed it, it became matted right away. I wished I buzzed mine, I left it for the bangs to hang out of my scarf, big mistake, because as I became bald I had unsightly patches all over my head giving off that same smell. I`m on a similar tx (Paclitaxel).

ClarkBlue: bummer about the smell, maybe a rose scented shampoo? MY chiropractor, a dear friend, is always going on about essential oils, and he mentioned that roses are a healing and non-allergenic scent. Gotta be better than burnt. NYISSA: thanks for your experience too, My hair is due to fall out any time now (wheee, lucky me)...its good to know what to watch for.

Edu: heads up about omeprazole, while it works better than ranitidine, there have been some good studies lately warning about scary heart side effects. I had reflux since I was pregnant, (lucky me, right?) and have been taking omeprazole to help it for a while. I changed to Zantac (ranitidine) cause I want my heart to be healthy, and that was a couple years ago before I ever knew I had cancer.

also, I have a friend who's 3 years out of surgery, chemo & rads (IDC, and Inflamatory BC) and she recommended to me to take aloe vera juice for reflux, aka the burning insides. It doesn't add to constipation (which I have too, so special!) and seems to help. IT tastes NASTY, but only need a couple swallows to help. You can get it at Trader Joes or Whole Foods or Sprouts. Hope that it helps!

Mykidsshavepaws: welcome another triple negative! Are you having surgery after chemo? We are putting up the good fight!!! My oncologist says taxol is very effective against triple negative. I am due for round 3 tomorrow. Have been feeling drained, and weird in the head since Friday, like I spent too long in the sun at the beach. Very different from the first week, but I also attended all the graduation stuff for my son's end of 6th grade, so maybe I just tired myself out. Oh, and PLEASE, please explain the backstory to your screenname. who's paws? and why? inquiring minds want to know.....

Blessings to all of you chemo-sabes!

Edu can you tell me more about the coconut oil preventing mouth sores? I have been suffering terribly. My nurse has given me magic mouthwash, dental paste, I brush after every meal, and gargle with baking soda and salt. They are finally starting to heal. I am due for my second treatment next week and I don't want to go through this again.

First day at work with a wig... It was okay. Everyone there knows what's going on. They were all very nice and it was nice to see the 2 guys who shaved their heads and beards in solidarity... I gave them both a huge hug and thanked them for such a kind act. 😊

If one more person tells me, "at least you have a pretty face!" or, "you're beautiful on the inside and outside!" I'm going to have to murder someone...

I know they are trying to be nice, but I was trying to explain to someone who I know thought I sounded ungrateful... I have no boobs/nipples, no pubic hair, and no hair on my head. Everything that I identified as being female is jacked up. She said, "yeah I guess having just ONEof those things happen would be traumatic..." And seemed to understand.

I know I sound like a selfish baby... Just let me whine!! 😩😩😩 LOL

-Keely

Clarkblue/Keely: kudos for you, girl. I feel like that cause people keep saying, wow, you look good. I wanna say, "I'm not dead yet!" I think people mean well, but they don't get why what they are saying isn't really helpful. I think cancer steals stuff from people, thats one of the stupidest, suckyest things about it. It steals our woman stuff, our energy, our healthy guts and our dignity. and then it steals people's coping skills, I think most people have no frame of reference except scary,and death and thhhhpt. They just don't know what to say. I do think those things are meant to be encouraging.

I think you are brave, and strong and amazing! We all are fighting this thing. Great job avoiding the bloodshead! And I am gonna use your words to explain to someone too, cause I think people want to understand and not just be scared.

blessings, I survived round 3 of weekly taxol. yay

QAJ, you absolutely right! I Just finished 6 Taxol today. My half way milestone. I do get a lot of that to " or you look good"..and I agree with what you saying...

. I think it's something to do with steroids but on day 3 after treatment I am at my worst emotionally. Just cry and feel sorry for myself. Other days more or less ok....

I am trying to be strong...cheerfull even making fun of myself and making funny pictures of me in cold caps ...so my friends don't get that emotionally sad and depressed me. Who wants to hear it? But I do get those horrible moments that I don't think I want to share with anyone

I can only talk about it here

My cousin is more like my sister, and one morning after my bilateral mastectomy she text me and asked how I was doing. It was a bad morning, and so I was honest with her. I told her I felt terrible, that this was the worst thing I've ever gone through, I felt useless to my family, and perhaps putting myself through all these surgeries, chemo, and radiation was a mistake because I felt so terrible that I couldn't imagine going through treatment. Her response was don't give up, and just think when all of this is done you'll have nice tatas and a flat tummy. You'll be so hot. I know she meant well and was trying to find something positive from this ordeal. I let her have it. I told her there was nothing positive about this situation. Yes I'll have new boobs, but they are boobs with no feeling, with scars, and multiple surgeries. I rather keep my flabby belly than have to endure another surgery that is going to take 6 to 8 weeks to heal from. I am going to lose my ovaries and be put into menopause at the age of 36. I am going to have hot flashes, sex may become painful, and I'm going to have to worry about bone loss, my metabolism is going to slow done and it's going to be hard to lose weight.

She apologized and she said I'm sorry I have no idea what you're going through. It was at that moment I realized no one has any idea what I'm going through, except other woman and men who are going through this too.

I thought I understood the effects breast cancer has on individuals because I watched my grandmother and my mother battle this disease. I had no clue what they were truly going through, until now. I had no idea of the anger and fear that they were facing. I think back and wish I would have done more for them or been a better granddaughter and daughter. My poor mother watched my children so that I could work and complete my RN degree, all while she was going through chemo and radiation. How did she do it? How did she take care of 2 toddlers while battling breast cancer? She didn't have to do that. I was grateful of course, but now I realize exactly what she facing and the strength she had.

I am so angry some days. This is not fair, not for myself or any of you. Will I ever feel normal again? I feel like my body and my scars will be a constant reminder. Will I live the rest of my life in fear of reoccurrance? Will I live to see my children grow up and graduate, get married, and have children? When will this cycle end? When will they find a cure for this awful disease that kills so many people every year? A disease that took my grandmother at the age of 53 and my mother at 52. How can I be positive? This is genetic. I'm receiving the same drugs my mom received 10 years ago. Why is it going to end any differently for me?

That's my vent for the day.

JGJ, I experience hot flashes mostly at night. And I am also not ready for induced menopause at my age.. I am a bit older then you are but hoped i still have a few years before menopause, but...:( My period stopped 2 weeks after first chemo. Or, well I don't miss that part.

cris8325 - That is my normal blood pressure, but I think someone else on another thread had trouble with low blood pressure as well - fainted a few times... I will try to find it. I think she ended up getting IV fluids and not having her 4th AC treatment. So DRINK, DRINK, DRINK...I think it was "NUMB" (username) on the April chemo thread??

Anyways - be sure to notify your MO and take action sooner rather than later...

-Keely

I made it through round one of TCHP chemo. It's only been about 3 days, but so far the side effects are minimal. My biggest problem is being tired. I didn't think it was humanly possible to be this tired. I slept most of every day so far. I do have the hiccups here and there, so weird. It will wake me up out of a dead sleep. I'm slightly achey, but that could be because I've been in bed so much. I'm dreading the day my hair will fall out. I've asked a friend to come over this week and just shave it ALL off.. I think it would break my heart to have in fall out in clumps. I'm trying to cope with the idea of having to wear a wig to work. At first I thought I just wouldn't go to work.. I thought there was NO WAY I would be able to face the world bald, scared and sick... I'm learning that it's slowly changing. I can't possibly stay inside for 4-5months moping around about a bald head. I must face this (bald) head on. Hell if I can get through this I can get through anything... or that is what I tell myself. Wish me luck

JustAgirl, I am going through TCH and I started losing my hair at 14 days after the first infusion. Before that happened, I went to a wig shop where the owner specializes in wigs for medical reasons. I picked out three wigs and then went back to her to have my head shaved and my wig styled. I have to tell you, I get more compliments on my wig than I have ever had with my own hair! I have not had horrible side effects and have been able to work most days. I scheduled my chemo for Thursday, so I take off Thursday and Friday. By Monday, I'm usually able to work a half day and then I'm OK. My coworkers just tell me if I'm letting my hair grow out! I tell them that I think I will leave it this length for a while. I'm shocked that they can't tell but they can't. I've had total strangers tell me they love my hair.

My wig shop also has baseball caps with hair. They are really cute! I go around the house bald but use my hat and pre-tied scarves (Abbey caps) to walk the dog and run errands, and of course, chemo. I have had some reaction to the wig but it's most likely the hot weather here in Las Vegas.

I would recommend, if at all possible, to find a very good wig shop and have them style the wig to you rather than buy one off the shelf or online. Your regular stylist may or may not have experience with wigs. The synthetic wigs now are excellent.

I completely understand. Remember that the wig will look a lot better once it is styled to you. The wigs have way too much hair off the shelf. And just think, though, your shower will take 5 minutes and you're ready for work a lot faster! And when you get home, you can whip that wig off and feel a lot cooler! We have to find the silver lining somewhere, right?

Jennifer