November 2014 Starting Chemo Crew

Hi ladies,

Wow, what an amazing group. I am loving all the pictures and posts. I wish this was set up like facebook, I can't keep track of all the posts and threads very well. So many times I've want to hit LIKE or make a encouragaging comment. Has anyone thought of having a closed group facebook chemo november? Anyway, enough about my tech difficulties.

Its been one week out since my chemo, over all it wasnt too bad. I had some mild nausea that the meds took care of quickly. Been a little spacey and lethargic, and maybe the chemo or my mental state waiting to see how I handled it. the Neulasta shot the following day was pretty easy in the belly with a fine needle BUT the following two days I had the bone and joint pain in my legs and knees. I was taking the claritin and tylenol and IBprofen and it barely took the edge off. My Oncologists nurse acted like I was totally off the wall and that should be plenty. Gotta say it only lasted 2 full days but it was uncomfortable and kept me from sleeping. Next time around I may take some left over pain meds those two days. My mouth still feels strange and tastes are funny. Never had the metallic taste but just off. I did notice that my chest broke out in a rash/acne 36 hours after chemo and 24 after the neulasta shot. Not sure who was the guilty party but it didn't itch and it was mostly gone the next day. A few break outs on my chest, which i have never had breakouts before. Today is day 7 and I feel pretty normal except for my taste buds.

My hair is still in place and strong but thats probably only for another week. Hopefully everyone is recovering well and the next time will be less difficult to navigate. I am amazed how young this group is. Its sad that we all have to meet this way but I'm finding great comfort in you ladies. Many of you are in my age range and dealing with jobs, kids, husbands and pets. We are all connected. My prayers are for you during this battle.

debby

Hi ladies, so far so good for Chemo #1. Thanks for the well wishes and know that I am praying for those also going today as well as the rest of you!! I'll share my pic. I didn't think I'd want to smile as we had a frantic morning, but I've calmed down and have been 99.9% tear free!

I've already drank about 80 oz of water and also sucking on ice. This means a lot of potty time, but hopefully this will all help in the end!

Wishing all no SEs!! Hope that those with SEs start feeling better. We will get through this together ladies.

I agree that Dee is looking awesome! First day down for you and hopefully a restful night. Keep smiling..all of you>

Nitenitegirl suggested a closed FB page. I would be happy to set up a closed page with the same title as we have here. Any yays or nays? Should we invite other monthly crews (December?)

Bonnie

dee4c

You look so pretty! Hoping you stay SE free and all is going well for you

shout out to all those who just started or about to start chemo - thinking of you and praying for you all and hoping you have no SEs love & hugs ladies

OK Ladies, I am setting up a closed FB group called: Winter 2014 chemo crew.

It is asking for names to invite so I can set it up but won't let me go further till I add some names.

Chime in with your names and I will add you to the invite list. Once I add some names it will create the group. I will invite the December ladies to the group too. I like this group and will visit here too but think that we will be able to have an easier time on FB too.

So I will start:

Bonnie Deahl

KnottingPt- I will stay on the boards but more medical on the board and a lot more social and encouragement on FB. I feel so bad that I can't easily keep up with each lady and support them. The FB set up will be easier to do just that.

An example is that I hit reply to your post and it still puts me at the very bottom of the feed.

I have that acne at the port site and the red flush. Anything work on the red flush to make it less tender

Howdy girls!! (I'm posting this since I just wrote it all up... looking forward to the FB group!!)

Well round two is done!! All went well… I had another allergic reaction (they think it may be the Herceptin but I am thinking the taxotere!) Since I had the same thing happen with the first infusion they gave me benedryl at first (25 ml) and then ran the Herceptin slooooooooow. Well that worked well until the very end… I had about 10 more min of the tax and I was starting to show signs. You know the drill if you have responded to the chemo in this way… so stopped everything. Shut the line down. 25 ml more of benedryl (that sent me to woosy land quick!)… more waiting then ran the last of the tax… more waiting… then I was set free.

SIDE NOTE… the lady in the chair across from me (colon cancer so totally diff drugs than us) was not happy at all yesterday. She was complaining from the start to her daughter who was cajoling her… well long story short she did not take her heart meds that day and halfway through her treatment she started to show signs of a stroke! That got the ward in high gear. It was great to see the nurses in action – SO competent and calm – but very informative! We have to be on alert with every aspect of this process. I wondered to myself if "chemo brain" got the best of her and she forgot to take her normal meds?

Silverbell – see above regarding my reaction. The nurse mentioned that they have good results when patients take Claritin before their treatment if they have SE's during treatment. She confirmed this with my doctor and they agree that I should take Claritin before my next infusion. I am sure I will be bumped up to 50 mg of Benadryl from the start too. I know that I have a very sensitive system ( I have had allergies since my teen years) and the nurse say my body definitely knows what it likes and doesn't!

I used to tell people I worked with that if I sneezed walking into the office (which I did!) the air quality was bad! I am like the canary in the mine!!

CC, Erica, Bonnied – thanks for the love. My girls are home now. They were worried but as we progress through the days they can see that I am "ok" I am making light of all this… that is pretty much my nature anyway and we are just getting on with life. Haley is in college at University of Iowa (go HAWKEYES!!) so she is a bit of a haul away from us. Good to have her home!

Knitting – ugh. The HAIR! Well mine is going today via a buzz cut. We are making a family outing for the event (crepes afterwards… my girls favorite!) I have been holding out doing anything with my hair until Haley came home from college. I wanted to break her in slow since she was the most freaked out with my diagnosis! What a pain!! For me it started coming out on day 15 and has been falling out every since…RAPIDLY! I have been wearing a nice knitted cap… hair in that… on the pillow, on the scarft around my neck. EVERYEHERE. It needs to go…comes out in clumps in the shower. By the way… those b-stard gray hairs that I really could not see before… they are holding on for dear life!! So now I look "old" Also the fu man chu facial hair in my mole… that is FIRMLY rooted. For real. Other hair (ahhh you know seems to have stopped growing…) I have my wigs and skull caps read but I have to say while on the steroids I am warm! And the weather here is warm so I am not sure what I am going to do with the dome later today!! Will keep you posted!! Btw… we did do the bats J

BreatheIn – I do not take extra meds either but we must do what we have to do! The chemo works… evidence with the side effects etc. I am doing neoajuvent and I have noticed after three weeks that my breast is not as tender and is less firm around where the tumors are! Yahoo! My doctor is understanding but FIRM with what is needed etc. I totally trust her. So we get the shot!!

Dee – I agree with the similar hair – nothing crazy. This has seemed to keep everyone in my house very happy. They say it is NOT the same as my hair but close. I know the wigs are more for them than me J

Amyslp – loving the head scarf and the SMILE!! We have the same diagnosis J YIIKES. Just read your post on falling! Take good care!!

Tally – love the pixie! You are rocking it girl!

JUST a quick note on the WIG front. I was trying on several and then I put this one on my head and ITS was a YES! Amazing how it just was me!! Wish is were a beat less $$ (this C trip is getting expensive!) but in the end I just got it. Christmas present for me! Not sure what you guys are experiencing but "the wig" was $600. Ugh.

MidLife – I had some wild pain about the same time as you… and then I got my period the next day…not sure if this is similar to you but once the cycle started it went away. Never had pre-p symptoms like that before! My nose is sore too with bleeding at times! I have an air filter running at night and have added a humidifier. I also use "alba" non petroleum jelly in my nose to keep it miost. This has really helped me a lot!

Luckyshoe – I can so relate to your hives! For the past 8 months I have not been able to have alcohol. I am not a regular drinker but would have wine from time to time and of course when my buddies come to visit we would kick up our heels per say! But as each month passed my body would reject any alcohol! The last glass I tried to drink just the night before my mammogram I had a violent reaction to! Sent me to the carpark where I waited for my husband to finish his meal. Of course I have not had a drink since but it really got me thinking if this was a sign from my body that something was just not right! Btw… I am the same with hives… stress or nervous and I break out! No fun!

Ahhhh. Just read Erica's response to the ice sipping. I have lost my taste buds and it is SO SO SO sad! I'm making the turkey dinner today for our "early" celebration and I can't taste a thing. Dang.

Erica & Midlife – I mentioned this earlier in a post but good to remind… I chug this stuff… plant based and no sugar – makes drinking water SO much easier http://www.amazon.com/Ultima-Replenisher-Lemonade-90-Servings/dp/B001JQLT18/ref=sr_1_4?s=hpc&ie=UTF8&qid=1416925865&sr=1-4&keywords=ultima+replenisher

Camera girl – the hair just starts to come out in your hand if you run it through your hair. Also the shower… it just keeps coming out – once it starts! I am sure the wind will give it a good blow too J I found my head to get tender at the root of the hair when it started… sort of irritating. When I started to to rub my head in the shower and detach the loose hair it felt better (mostly in the back of my head!) Today I am getting it buzzed off (day 22 since start for me… hair started coming out on day 15) because I just cannot deal with the little hairs all over the sink, floor, sweater etc! Time to embrace the loss!!

Debby & Bonnied! I am with you… I would be up for a closed FB group! Bonnied I sent you a message on FB… may be in your "other" message folder!

Wendy

hi ladies. Sixth day from first round of AC. happy to report I am starting to feel like myself again. First 4 days I think are the worst. Just as far as chemo brain tiredness and achiness. Oldest daughter coming home from college today and we are off to go wig shopping with my other daughter and my mom. This will be my first outing since treatment which I'm in desperate need of. Hugs to all of you and a wonderful day with no side effects.

Bonnie... Christine Noreika

Bonnie I just saw the FB group and it says it is public. Are we doing a private closed group or public? I would prefer closed because I don't want everyone under the sun to know all of the details that I'm willing to share with those of us going through it. Just my two cents! Thanks for setting it up!

Hello Ladies! I'm new here, just started chemo (for the second time, unfortunately) this month... looking forward to sharing my story with all of you! I've been reading your posts and its been really helpful!

Bonnie - I just messaged you on facebook so you can add me to the group. Thanks so much for doing this!

So.. a little about me: I'm Marcela from Sao Paulo, Brazil (sorry for spelling mistakes!), I'm 25 yo and was first diagnosed when I was 23 (anyone around my age here?) ... I had neoadjuvant chemo (4 rounds of AC, 12 rounds of TH), lumpectomy, radiation and was done. Lived happily for about one year and then the cancer was back. This was two months or so ago. I had a bilateral mastectomy and am now doing TCH+Perjeta (6 rounds). All my other scans are clear so its a local recurrency.

I felt mostly normal during my first chemo, not many SE, but now it is a new story... I've just had my second infusion and feel like every SE on the list is happening to me . I think it'll be good to have people who understand what I'm going through to talk about...most people feel sorry for me and that's definitely NOT what I want!

I tried cold capping but my hair is almost gone...went wig shopping yesterday and found one that feels close to my previous hair... I'll post pictures later!

Keep posting people and believe from someone whose done it before: it WILL end... it sucks, but it works!

Oh wow amylsp how aweful! Praying for quick healing girl!! I'm on a 5 and still aweful. Can't watch tv, talk to ppl, concentration stinks!!! In bed one minute then couch next. Sore throat hit hard. Magic mouthwash here i come. Can't wait to feeling somewhat normal again. Cameragirl.....good question. I'm curious too...

Hugs to all!!!