Starting Chemo in October 2015

DurhamGirl

ncsue, thanks for your post and encouraging words. I am so afraid that every round will be like this for me, but your words give me hope that maybe the next ones won't be as bad.

take care of yourself...

maybeoneday

My first chemo was on the 12, I woke up this morning to most of hair on the bed. I knew it was going to happened but it still made me cry. I spent the last week in pain because of hemorrhoids and now my hair is gone. Everyone is in my ear telling me to be positive, Its really hard after the week I had.

biscuits

maybeoneday: I felt bad when I read your post. It sounds like you had a difficult day. We try to stay positive ( and strong) more for others sake than for ourselves. And you know what? It's OKAY to have times when you are feeling a little sorry for yourself. Sometimes there is nothing more healing than a good cry...I hope tomorrow will be a better day for you

mustlovepoodles

Maybeoneday, you totally have earned the right to a good, screaming cry. Your butt hurts, your hairs are down the drain, AND your breasts are trying to kill you. Go ahead. Wail away. I'll join you. (I noticed the beginnings of hair loss today--Foo!)

Petula

Hi,

I just found out today that I will need chemo starting next week. Oncotype Dx score was 35. I really am scared to death of both the short and long term effects of CT.. Will be on taxotere / cytoxan. I feel like this will never end. Looking for words of wisdom and support.

Thank you all

biscuits

Petula: you have earned the right to be scared. It's okay to be sad, scared, even angry. With an Oncotype score of 35, it's time to bring in the soldiers to fight the battle. That's what the chemo is...our soldiers to fight the cancer. We are all here to get support and knowledge from one another. Hang in there, girl! Each new day is a gift

Petula

Hi Biscuits: love your 'handle'😃 Thanks so much for your kind words of encouragement. I see you have a similar Onc Dx score to me. I can handle almost any thing but would love to give Chemo a skip if I could. My very best to you - how has your Chemo exp been?

Sending a great big hug-Petula👍

Skittlegirl

I am on a different regiment, but the first week is the worst. The day of and the next day aren't too bad. Day 4 (Saturday since I have infusions on Wednesdays) are bad. Day 5 is slightly better, but not much. Pretty much just want to lay around in a dark room and try to sleep as much as possible. By the next Wednesday I am feeling better and just keep feeling a little bit more better each day. And then it's week 3 and time to start again.

Kimmer33

can i join the pity party today? I had my 2nd infusion last friday and hair is coming out in handfuls today. I am so sad today, feeling really low energy and it just seems like this will never end. I So look forward to a light at the end of the tunnel...

So wished i could have skipped chemo with my low onco score but oh well, we do whatever we can to kill this potential beast right

MamaBexar

I guess I am another "hair today, gone tomorrow". I just know I am going to have the ugliest bald head ever. It feels so lumpy. I may just cover every reflective surface in the house. My MO was surprised when I told her the pubic hair went first. Is that usual??

AmyBeader

Mine too, MamaBexar, but I didn't share with my MO. Maybe no one ever tells them!

I am relishing in this good week of finally feeling better, even though my hair is jumping ship. So much to do before Chemo #2!

Autumn121

Hi Everyone! Had my first A/C on the 22nd. Felt great the first two days, then the crushing fatigue that my mo talked about started on day 3. Today is day 6 and I am feeling slightly more alert! Does anyone know how long this should last?

I have to say thank goodness for anti nausea drugs. They have kept me comfortable.

So sorry to hear of others going to the hospital. Hope you feel somewhat better soon.

I'm on "hair watch" too. This should be my last weekend with hair for a while!

ncsue927

Hey, everyone! I'm so sorry for those of you losing your hair. It feels like that was harder than losing the breast. My hair kept thinning and thinning until you could see so much scalp and what was left was like straw. When I went to get the rest buzzed, I shed some tears, but once it was done, , the bald head looked much better than what I had left. I, too, thought I would have an ugly bald head (I have a really big head), but again, not that bad. And with all that's going on with the chemo and the side effects, this head is the least of my concerns. I wear a cap around the house and to sleep because it is simply more comfortable for me. I haven't lost any other body hair yet, only head. But the first couple of days it started to fall out, I saw evidence that the pubic hair was going and then it stopped. So, I guess time will tell.

Had round 3 of A/C today. White count is back up. Three more to go on this round. Worked with my MO today on a plan to catch my falling white count earlier (before it hits .2 again) and get the neupogen started earlier so I don't wind up with a week like last week. These first weeks of chemo are a crap shoot to see how our bodies are going to react to the drugs (everyone is a little different). Then the MO treats the SEs and we know what to do on the next dose. So each time can be a little better. Hang in there!!! This is not permanent. This a bit of a rocky road to get to a better place. I have a really cool spreadsheet to track your symptoms and SEs for each week of treatment. It helps to look back and see what happened the last treatment so you know what to expect. I got it from the American Cancer Society page. If anyone is interested, I can send you the link.

Durhamgirl....hang in there! The docs will figure it out and you will feel better. Maybe not normal, but better. Sending good thoughts your way!

Kimmer33

Thanks ladies! Yes, pubic hair went first as well, lololol.

I have to say I am thankful for the anti-nausea meds, have not had even one moment of nausea, and had a crazy good appetite, so very thankful for that. The fatigue is intense this week, but I do feel better than the week after my first treatment.

Yes ncsue each week seems to have a different side effect, it's a very interesting journey. I am wearing a simple beanie around the house to catch the hair, going outside every once in a while to "shed" and shake it out. My skin on my head feels really numb today, does anyone else feel that?

All the best to everyone as we navigate this together!

Petula

Hi ncsue,

I would love the link. My first chemo is next Tuesday. Not sure I'm ready. Would do anything not to have to go through.

My best to you,

Petula

igay1ord

I had surgery on October 14th, 2015, to have my port placed. Had my first chemo treatment with Taxotere/Carboplatin/Herceptin on October 15th, 2015. My doctor has me coming in 24 hours after each treatment for a shot of Neulasta to help build up my white blood count. The treatment wasn't as bad as I thought it was going to be! I was sick 2 days after treatment, for less than 24 hrs. I lost 6 lbs in the first 5 days after treatment. I'm on the every 3-week schedule for a treatment for 4 months, off 4 months during which I'll have my radiation, then back on for 4 months with Herceptin only.

I used to have hair to my shoulders, but went to Great Clips 2 weeks ago and had it cut into a short pixie! Love it! But...I'm on hair watch! I was told that I probably will have lost my hair by my next treatment, but that's only 7 days away! I wish it would go ahead and come out...so it can start growing again!

igay1ord

Kimmer33...It's quite alright to have a pity party, just don't get stuck in it! I'm on hair watch now! I'm having my 2nd treatment in a week, so it probably should be gone soon! My husband and I went to a chemo class at my oncologist's office. The lady who taught the class basically told all the husbands that we women will lose ALL hair EVERYWHERE! I'm embarrassed to say that my husband had the biggest grin come over his face! Well, we all knew what he was thinking!

I actually went to Great Clips and had all my hair cut off a couple of weeks ago. I had it cut from below my shoulders into the same haircut that Jamie Lee Curtis has. I figured it would be easier to lose short hair, than long. We'll see!

Have a really great week!

biscuits

Hi Petula! Hugs right back at ya...I know you want to avoid chemo, but I think it is very necessary because of the high Onco score. You want to nip it in the bud and hope it never comes back again. So, I am seven days post chemo. First few days were okay. The third through the sixth day was a crapshoot. A little bit of this and a little bit of that. Constipation, which changed to the trots. Fevers, chills, sore throat, some taste changes, times of nausea ( but the meds they give for that really work). I think my biggest frustration was with the mouth sores that developed. I did all the preventative stuff to guard against it, but it happened anyway. Okay, now I'm putting on the boxing gloves! LOL! It's messing with my mealtimes and that's something I just can't abide. Today, it seemed as if the fog lifted and I felt like myself. BTW,I chose "biscuits" as that is my Hubby's nickname for me.

mustlovepoodles

You know what's been my biggest kick in the pants? My DH got some Halloween candy--M&Ms, Runts, Butterfingers--and all of it tastes bad. CHOCOLATE tastes so weird. I'm a big choco-holic and right now the taste of chocolate just turns my stomach. And the Runts candies--I love those things, but they taste like pennies now. Bleaaah~

Kimmer33

Thanks igay1ord it's hard to get out of this funk I must say...

I thought cutting my hair Jamie Lee Curtis style would be fine, but finding it's coming out all over, and the skin hurts, and I wished I had just buzzed it. I don't have a trimmer, so will just have to keep manually shedding myself I guess. Ugh.

Mustlovepoodles, so sorry about the chocolate, that SUCKS! Well I have requested a large tray of fruit be delivered to my door (by my mom, lol) today, I am craving fruit so much, plus I am (and always have) having a hard time drinking water, even with lemon in it, it just doesn't taste good so maybe this way I can get more fluids down.

Have a good day ladies, thoughts for a side-effect free day!!!!

Kim

LRFTexan

I have had 2 infusions of AC so far and am surprised with the few side effects. I am on day 28 and still have hair too (I'm cold capping). I'm ready to get the next infusions done and move on to the weekly Taxol! I'm impatient.

ncsue927

Petula, I'm not too computer savy. Try this and let me know if it doesn't work. It should take you to the spreadsheet. If not, I will send you the path to get there.

I know it's scary....the unknown is always scary. But it is manageable. And there are people here that are going through the same thing that can help answer questions and give support. Good luck.

http://www.cancer.org/acs/groups/content/@nho/documents/document/acsq-009502.pdf

ncsue927

Mustlovepoodles.....I feel your pain!!!! I too am a chocolate lover. I always have it on hand and partake every day. Or I did. I want no part of it now. Same with coffee. I was a huge coffee drinker. Again, I want no part of it. What in the world is that about? My two guilty pleasures gone. I'm just hoping it comes back after this is over!

Jclc83

joining the group! I had my port put in during my lumpectomy and ax dissection. Of course it's in the most inconvenient spot right where my seatbelt. My purse and my bra strap goes. Oh well!

Started TC chemo Oct 8 with Neulasta the following day. No nausea to speak of just diarrhea. But I had the most unusual headaches and spasms on day 4,5 and 6 that were completely debilitating. That was the worst part. Now I am completely and utterly fatigued by the simplest things I get my second of six rounds of chemo tomorrow and am scheduled to return to work on Monday and honestly I don't think I can work I have a physically demanding job in a hospital on third shift. They make it so sound like going to work is simple like I used to think that walking to the bathroom is simple lol.

My hair started falling out after two weeks and is about half gone now. Curious about how others are feeling. Best wishes to you all

Skittlegirl

Hey Jclc,

I am about a week ahead of you. I am okay, but there are days that I don't want to be too far from the bathroom for the same SE you have. I am off work for chemo, so that helps. I have to call in to the STD company soon because my leave is only approved to 11/13 right now. I should finish mid-January with the chemo.

Andraxo

Welcome jclc83! Seems crazy for you to be back at work that day - it's right when the worst side effects usually hit the majority of people, including you on the first round.

I'm on a similar schedule to you - 6 rounds TC, started Oct 6th, and was supposed to have round 2 yesterday but it is now postponed a week due to a weird allergic reaction (not from the chemo though - they're not sure what it is from this late after chemo...probably just my immune system out of whack). Round 2 hopefully next week. Don't like that it changed my schedule since I planned chemo around vacations and had everything mapped out. It's hard to accept that what happens during treatment is unpredictable.

Buzzed all my hair off on Monday once they said my Tues chemo wasn't going to happen. I cold capped but it was not successful enough for me. I lost a lot of hair. Too much stress worrying about how much hair was still coming out and then the maintenance trying to cover some big bald patches. I couldn't imagine how I'd grow it back in from patchwork. Liking the bald and I'm rockin' it at work! (I also work in a hospital).

Aside from this very frustrating and annoying histamine problem (hives, dermatographia, respiratory involvement), my energy level is good otherwise (though maybe boosted from the extra steroids) and still exercising a fair amount daily. I do feel borderline sick, but I assume that is pretty normal.

Hope everyone keeps feeling better and better every day past chemo...

xoxox

igay1ord

Jclc83...did your shot of Neulasta cause bone pain? My oncologist told me to start taking Claritin for 24 hours before the shot (which I did), but my knees/thighs/ankles hurt so bad I felt like I had the flu!

Jclc83

Yes I had bone pain and aches. I took Claritin to counteract the Neulasta too. I took steroids to counteract the chemo drugs. My Onc also thinks that the severe headaches I had were from the Neulasta. I took lots of Advil for the headaches. I'm not sure where my SE come from but they had me in tears for a few days. The SE were better than I expected but I was totally unprepared for some. I think round two will be easier, at least I'll know what to expect (hopefully). My motto is One day at a time

Jclc83

it sounds like we have a lot in common

Jclc83

Adraxo sounds like we have a lot in common