Chemo in Sept 08
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Hi all -
Just checking in. Week 1 was up and down for me, but I survived. Mostly fatigue and diarrhea, and I have one of those lovely mouth sores. But I feel good this week, those symptoms are both gone.
Oh and, Tanzie, next time you do the list, you can on my drugs if you want - TCH. Thank you!
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Had A/C dose dense last Thursday(placebo/ avistan,Clinical Trial# e5103) Feeling totally like myself today and so grateful!! SE have been so much less than I anticipated. I am drinking a pint of water an hour during the day/evening and think this may be helping with reducing SE's along with walking a mile a day. The fall wather is so beautiful here in Minnesota!!
I am so not ready to loose my hair, thanks to those of you sharing your stories regarding hair loss. It helps to know this is a big deal for others as well...and how to handle it.
Good luck to those starting this week!
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I was told not to eat fresh fruits and vegatables that have a peel; must not be able to remove all of the bacteria. I keep a 10% bleach solution in a spray bottle and spray down my shower, shower curtain, shower shoes, toliet seat, and toothbrush after use (I forget and leave the bathroom door open and my two big dogs think that the toliet is a never-ending fountain for their exclusive use - so I spray the toliet seat too). I've banned my husband from taking off his workshoes in the bed room and have set out our slippers by the door to change into when we get home from work. I have to wear a mask at work as we have had some sick employees and also because I handle blood and other body fluids - makes my face sweat!
I use Kiss My Face Obsessively Organic toothpaste with aloe (nice taste). I found tree tea oil at Sally Beauty Suppy when I was looking for a head for my wig (bty they have styrofoam heads for ~$4.00). I just really hate the smell of tree tea oil and haven't been able to get the brush out of the bottle and to my nails
. I also use the Liquid Crystal deoderant spray (no aluminium) and it gets me through the work day.Singapore Chris; I'd love to see a picture. I'm posting at work, but will update my photo when I get home.
Still have hair - everywhere- day 12 (although a couple of chin hairs that I tweezed came out with a lot less resistance than usual).
As I understand, you should have your counts checked 10 days post treatment (Nadir = day your counts should be at their lowest point). I aslo have a standing order to have CBC & Chemscan (electrolytes, BUN, Creatinine, liver enzymes,glucose) prior to each tx.
My onc told me that 70% women who are premenapausal are triple negatives (ER-,PR-,Her2-); I do not see that reflected on these boards. Has anyone else been told something similar?
Happy 2nd day of Fall to all!
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Wow, after reading your reply, MissingWink, I feel totally unprepared! All I was told was to drink plenty of water and make sure I wash my hands or use hand sanitizer often. Also, if my sons have friends over have them use hand sanitizer when they come in the door. Nothing else.
Will I be able to go to my sons' hockey games? I'll make sure they wash their own stinky (i.e full of bacteria) gear. But, other than what I mentioned in the first paragraph I was told to just try to live my life as normal as possible.
Thanks!
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LisaF, basically I was told the same as you. They said I don't need to avoid church or crowds necessarily - just use common sense. And I'm the one not getting the neulasta shot (have I mentioned that before??
. I'm still a little paranoid as you might can tell 
Susan
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Bettysgirl The FEC wasn't too bad. Sick the first night many times and then nauseated for the next 2 days and very tired. The next couple were much better that way but I felt like I was spacey, foggy and not completely in control. Didn't like that feeling. I received the neulasta shot the next day and just had a headache. I won't have my blood counts done till the 29 the day before the next one, so hoping they will be good. Good luck
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Hi Susan,
Good to hear that you were told the same thing. I respect people like TheMissingWink who are organized and diligent enough to keep on on things. Maybe now that my white blood cells will be zapped I'll change my tune, as I'm the one in the family that hardly ever gets sick. The whole family can have a cold and I hardly ever get it. But, maybe it won't be that way any more. Bummer!
By the way, you might have posted before about why are not getting the Neulasta shot, but I might have missed it. Can you tell us why you are not? Also, did you have a high oncotype score? It seems with Stage 1, Grade 1, hormone positive, Her2- you wouldn't be a normal candidate for chemo.....
Thanks!
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Lisa & Susan,
I'm taking all of these precautions because my absolute neutrophil count was 0.3 (normal should be at least 1.8; total WBC count was 2.4). The neutrophils are the type of WBCs that help remove bacteria from your system. I work in a clinical laboratory so I want to make sure that I have the least exposure/best protection possible.
I have been pretty good up until yesterday about keeping my bathroom clean, but when I got a call from the onc nurse telling me that I had to wear a mask, I ramped up my routine. Hopefully, my count will be up by my next tx, which is a week from Thursday.
Donna
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Hi girls!!!
Well, I buzzed my hair two days ago. I was sitting at home and was pulling my hair back into a ponytail when I started to notice that I was shedding lots and lots of hair! So, I woke up my son who also happened to be hungover, and had him give me my buzz cut. Needless to say, I had to have it touched up when my fiance came home. It was an initial shock to see myself with a buzz cut. My fiance thinks I'm hot and can't keep his hands off me
... My two older sons think I look cool. My 13 yr old daughter on the other hand is having issues with my buzz cut and wants me to either wear a wig or a baseball hat - EVEN AT HOME. I know she has to adjust. Yuyueno... my first chemo tx was on Sept 8th. This is DAY 15 and I am feeling great! I have my taste and appetite back just in time for round 2 next week. Like I said though, I am feeling normal today. The last two weeks were horrible for me and I hope that round 2 isn't so bad....
Regards to all....
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Thanks Donna! Wow, after seeing your numbers I can certainly see why you need to take all of the precautions necessary. I'm sure I'll be able to adjust once I know what to expect. Good luck with your numbers and treatment next week.
Priane--Wow, having someone not being able to keep their hands off you! How cool! Glad to hear you are feeling great!!
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looking through all of these posts the thing that sticks out to me is that we are all doing okay,,,not so comfortable at times, sad at times but we are DOING it...that should make all of us feel a little stronger as we share our stories more...work was good but whew was it good to come home a get a little nap..ZZ
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Afternoon everyone,
I'm really happy to be on this forum. I've learned so much in the past few week about the side effects of some medications and treatments. I have Rheumatoid Arthritis; the last thing I want to experience is bone/ and joint pain, but it may happen if my bone marrow is stimulated to produce white blood cells,
My Oncologist never gave me a booster; his terminology. So far so good. My last CBC was July with good numbers.
YEAH! I am two weeks post my first AC treatment and I can taste some foods again. I feel like I'm pregnant again. I crave baked potatoes with sour cream and chives. Huh? I'm grateful for no more metal mouth.
My hair is still there, though I did cut it short. I am not getting my second treatment this week or next week. It still may fall out tomorrow; it's my 14th day and my scalp is extremely tender.
I may have to repeat my first chemo session if my new doc thinks it's necessary...maybe not...fingers xed. If I do repeat I will remember to be careful with money transactions and pay close attention to where I put my personal things, i.e. my purse, my keys and my insurance papers. arrgh.
Thanks for the tips about Tom's and Tea Tree Oil.
again many thanks
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Any health food store would carry tea tree oil. Love that stuff!
My hair is really starting to come out now. I just run my fingers through it and get a bunch. I think tonight is the night to get it buzzed. I'm just wondering about what to do after that. Will the stubble from the buzz eventually fall out as well, or will I have to shave it? That's too weird...lathering up my scalp with shaving cream and taking a razor to it. Well, my husband would do the shaving, but still.
Any ideas?
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Hi, I had my first chemo 9/5 so that makes me a September girl. My next one is this Friday the 26th so please add me to the list.
I had TC and my oncologist gave me Neulasta 24 hours later as I'd had sepsis a few times in the last years. By day 5 I was a mess and went to the ER with a temp of 101.5. Turns out, in spite of the Neulasta my white count and neutrophils were at absolute zero. Spent 4 days in isolation with neutropenic fever and a week at home recuperating. Hair started to fall out by day 10 and had to shave it at day 12. The inside of my mouth and throat peeled at the hospital and I was on liquids for 10 days and it still hurts. I have 3 finger nails that I am worried about as they are getting dark and hurt like heck. We are going to try chemo this Friday at 80% strength and if I have a reaction, we are done. I was surprised that my Dr. didn't order any kind of blood tests at all in the 3 weeks between my chemos. Anybody else have this reaction? Thankfully, no candida! Looking at the bright side.
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Emily - I remember one of the items listed on the Chemo Shopping List was an adhesive lint roller to pick up the stubble when it fell out. I guess that you could just run it over your head too? I know that Tree Tea Oil is really good for you, but do you like the smell? It smells to medicinal to me. But then again my olfractory nerves my not be up to snuff yet (nah, I never liked the smell).
I'm on day 12 and everything is still attached (hairwise). I'm wondering how I will react when it starts to fall out...you know, the actual reality of it happening. I've got wigs, falls, halos, and hats, so I am prepared. I just hope I handle it with as much grace as many of you on this thread have.
Iowagirl - I sent you a private message. Not having Candida albicans is indeed an item to add to your "Yay" list.
Donna
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Oh yeah! I forgot about the lint roller. Thanks, Donna! I was on Day 16 when hair south o' the border began falling out. Oh, hello, why are there so many hairs in my undies? Oh yeah, <<smack>>, my hair is falling out!
Now, on Day 19 it's detaching itself from the scalp. Not falling-falling, like I turn my head and it comes out, but when I touch my hair I come away with stuff. Not pretty. My hair is so thick, it's not noticeable to anyone yet, but I'm gonna buzz it tonight.
I watched this youtube for inspiration:
http://www.youtube.com/watch?v=oVzWAF0wl50 Check it out!
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I get to join this club - 1st treatment (cytoxan/Taxotere) is Thurs, the 26th. I just met with my med onc today and wanted to get started asap - waiting just seemed pointless. The great news is I only have to have 4 tx - woohoo. I had thought because I was node positive, they were going to go much longer, so somehow this seems like winning the lotto. It's a relief to know the plan/drugs so I can at least fake being in control. I'll be working from home the majority of the time, so hopefully that makes it more maneagable.
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Welcome rseaw22! Have you seen the "Chemo Shopping List" on the forum?
Good Luck to you and all that are starting this week!
Juli
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Oh, rseaw22, fake being in control is my life! I love it! I just faked being in control about 30 minutes ago when I had my husband shave my head.
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Tomorrow's priority is to work the lists and get my prescrips filled - tonight I've been reading the lit my doc sent home with me. They say I will lose my hair in 2 wks, but not to use blow dryers or harsh chemicals prior - which means it will look like KaKa until it falls out...hmmm. I'll either get diarhea or constipation but I should take preventative measures prior to chemo - would help if I was psychic. It really helped to work through this chain and watch how you guys have been handling it. I took a long walk tonight - that always helps me feel just a little better. I have an hour class on chemo tomorrow afternoon then first treatment in Thursday morning...I suspect that will be a crash course in how my body handles everything. My husband starting shaving his head 4 yrs ago, so he's all ready to help on that step - at least in theory. I do keep waffling on wigs - I think I need to ask a friend to go with me, but I'm afraid that will be too overwhelming to deal with tomorrow. Did any of you wait to get a wig until after your hair was gone?
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Hey all my September chemo buddies,
Glad to hear from everyone and rseaw22 and iowagirl welcome! I have been feeling good this last two weeks and for that I am GRATEFUL. Still doing my weekly Taxol and my SE have been generally mild.(besides some major neuropathy in my feet UGH! does anyone else have that?) It makes me think A/C is gonna kick my behind in a few weeks! rseaw22 I read that also about no harsh chemicals, dont rub your hair too hard etc etc, my thought was, the hair was gonna fall out no matter what, but while I still had it it was going to look GOOD. I got a wig before my hair fell out, just wore it for the first time to work Sunday and guess what, I HATED it. Many people told me it looked nice, but it was hot, it itched, it slid, I will probably never wear it again. In fact as soon as I left work I flung it to the floor of my car where it is currently laying looking like a dead rodent. Oh well. Have a good week with treatments everyone. Tanzie thanks for making our list and updating it!
Marci
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MissingWink
I am also triple negative and had not heard about the 70% statistic. I have heard it is 10-15% of breast cancers and is more common in younger women (I am 40). Sorry your counts have been low. I work in a hospital and was very nervous about working and doing chemo but so far, fingers crossed, mine have been good. Good luck next week on your tx, hope it all goes well.
Marci
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Tanzie,
My tx start day was 9/3. Tx regimine: Taxol weekly X9, then A/C every 2 wks for 8 weeks. Surgery sometime in Jan.
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I will start this friday. TCH for 6 rounds and then Herceptin to finish out the yr. I also signed up for the study that they add Avastin and I will be on the recieving end of it. I hope this is a good thing. THey told me my first chemo session is going to be 6 hours, does that seem right? What am I going to do for 6 hours, I can't sit still for 6 minutes. I've been handling all of this fine until I went into the chemo room to schedule my first round. There were so many people in there, some looked terrible sick. I just kept thinking "what I am doing here, this isn't real". Then the tears started and wouldn't stop. I hope I don't melt down on Friday.
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Hang in there, Ango74. We are all rooting for you and hold you in our thoughts.
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Feeling better today (AC last Friday). Though smells definitely make me feel sick. Does anyone else have this? Increased sensitivity to smells?
I'm amazed by how much hair I have. I have been pulling out handfuls since Sunday, but still it just looks thin. I do have a wig and I'm trying to get my courage to wear it into work today. I'll let you know how it goes.
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Lisa, to answer your question about the neulasta shot - I don't know why I'm not getting it. I didn't think to ask about it during my first treatment. I guess my onco just doesn't give it routinely. My husband has been sick and my daughter woke up this morning with a fever. Dh has taken her to the doc. I'm paranoid, of course, since I'm on Day 10, so I called my drs. office to see if I should come in to get my blood count checked or anything. Waiting on them to call back.
Re oncotype - did not have the testing done. My tumor was close to 2 cm and I'm mid-40s, so I think those were the main factors in them suggesting I do 4 rounds of TC.
Emily - do you have a buzz cut or did your husband shave it completely? I don't have any hair loss yet, but am expecting it any day now. I hate the waiting...
Welcome rseaw, 6cooks and ango. Ango I thought I would melt down too on my first treatment - but it went smoothly and I did better than I thought. I'm hoping the same for you! (((((((()))))))))
Brandonsmom - re smells - I was thinking the opposite for me. I'm wondering if my sense of smell has lessened. Maybe it is just that things still taste a little funny. What treatment day are you on? Good luck w/ the wig and work!
I finally remembered my question from the other day. Are we supposed to avoid antioxidants during chemo? I know we want them normally, but seems like I read that somewhere. Do I need to not drink green tea, grape juice etc?
Have a great day gals. I don't see anyone on the list starting today, but I'm thinking good thoughts for those who are about to start and minimal se's to those going through this.
hugs,
Susan
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forgot to say - Iowagirl, so sorry you've had such a tough time!! Hope you are feeling much better.
And 6cooks, I see now that you were already on the list. Sorry I welcomed you like a newbie, but hi anyway
Susan
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Re: smells, certain smells give me difficulty. Can't say if i am more sensitive to them just kind of back to morning sickness days..
Sue- my onco said i could do multi vitamins but not anti-oxidants. also no vit. c
ango74- hang in there. I had a OMG moment before my first treatment last week. Mine also took 6 hrs. You just hang in there. Take a book, ipod or good buddy and know that we will be thinking about you.
rseaw- i know the lists of SE's are overwhelming and there is no way to anticipate if it will be nausea or diarreah..they told me if yo are prone to being sick that's probably what it will be I tend to run if you know what i mean and that has been true for me with the SE's
HANG IN THERE everybody and have a good day.
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Re: Neulasta - my doc mentioned yesterday that some insurance co won't pay for neulasta until you prove you need it (and it's expensive). She prefers to order it from the beginnning to avoid problems, but said a lot of dr's don't.
Re: sick looking people in the chemo room - when I was scheduling yesterday I got my first look at the room. I could only see one old guy who oddly distracted me. I kept thinking "what a sec - I thought if you were old, you didn't have to have chemo - and why does he still have his hair?" kind of surreal. It didn't help that the scheduler looked like she was going to cry when she started looking at my chart...like it's harder for them to put healthy looking people through this...sigh.
Re: antioxidants - I asked my dr about these yesterday. She said there was no way to prove if they negatively effected chemo treatments but preferred that I not take any during treatments (except a multi). Foods were fine - just not the more concentrated dose. I don't know how I feel about this - and mine are such horse pills, I'm not sure I could get them down anyway.
Question: wigs - can I ask what kind you guys are getting/liking/hating? I heard that the real hair ones have a better base, so are not as hot and don't slip...I don't want to pay the money and hate it, but my early opinion is that I will be one ugly bald person...I've never been so jealous of the beautiful black models with the super short hair...did anyone read Lopsided? The author had BC - it's funny and helped me through the diagnosis phase - but she was gorgeous....sigh.
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