Chemo group starting December 2014

akita - appreciate the compliment!  Just trying to pay it forward to the newbies!

bonnied - thanks!  I am a willing resource for any questions that I am able to answer - or for pointing any of you in the right direction for an answer.  BTW - I noticed you are in Sterling - my son is down the street from you in Ashburn, VA.  He works in the ER at Fairfax Hospital, is a firefighter/EMT in Loudon County and a student at George Mason.  I will be up there on Monday for a visit for a Her2+ vaccine booster trial I participate in in Washington, D.C. through Johns Hopkins, and will get to see him for a lunch date.

Went to the Doctor for blood work yesterday and discovered I have nettropenia, bummer my honey and I were going to go the the casino for a little while this afternoon but dr said no too great a risk.  I talked him in to letting me keep my appointment for my hair and dinner with friends. he agreed so I went , my 3 best friends went charging into that hair saloon like we owned it.  Tony did a great job on the cut but I hate it , it makes me look like a boy.  I have always worn long hair so tried to prepare as much as I could but I am still extremely sad..My husband said my hair looks terrific and I look just like his wife only with shorter hair.  I am very depressed over this whole hair thing trying to get my arms around it and put it into perspective but it is really hard.  I have a wonderful wig that I purchased and brought along to the hair dresser cus I knew I would not have the courage to wear the short hair out of the saloon.  So we go walking up to the restaurant t meet our husband an my wig was slip sliding all over, had to adjust the darn thing throughout dinner.  Definitely need to adjust the tighteners before next time. I know I will get used to it eventually as there really is no other choice, I am just gonna let this day be my only sad day over this.  Tomorrow I am going to love my do! 

Does anyone know if I should take Tylenol for a fever of 99.9 when I  nave neutropenia?  I am hoping it is the stress of the whole hair thing. The restaurant we went to was more crowded then normal .  Should I call and ask someone at the office about taking the Tylenol. they said don't call unless it is 100.5 or greater but I'm thinking it may bring it down before it gets to 100.5.  I know I'm blabbering, not a good day looking to tomorrow, I know it will be a good one cause I won't allow many of these type days..

Okay, I' m done.  hope everyone is feeling great today and make it through there list of chores unevently

Hello.

I'm going to be starting neoadjuvent chemo, 6 cycles of TCHP, on Wednesday, the 17th, I think.

I've been so busy sorting out doctors and opinions and scans and tests that I haven't researched much about chemo at all! And Monday I'll be have a Port put in. I know little about that too! SO much info to absorb... And I'm still a bit shocked from the initial diagnosis last month!

I think I'd like to get a wig but haven't had time to shop AT ALL. I've bare had time to eat and sleep since my diagnosis.

I'm actually hoping things will get less crazy after Chemo starts, but I'm thinking that probably won't happen. I've still got more tests and more consults ahead...

I'm glad you all are here as a source of support, even though the circumstances are not happy.

I'll be checking in here a LOT, because it's such a great place to learn things.

I hope everyone will have as smooth a course of chemo as possible!

Bonnied - Thanks so much for adding me to the FB group! I sent you a message with my email address, so let me know if you didn't get it. I'm really looking forward to utilizing this group & the FB one. Hopefully, I will have some words of wisdom once I've started on my "chemo" journey. One step at a time, right?

Wow... Had my first chemo (TC) on Tuesday, 12/9. Had a hard time in the chair....just couldn't stop crying....not like bawling but just seeping tears. The nurses were wonderful and kept asking if I was just having a reaction and I said no that it was just my stupid depression and reading all of my FaceBook posts from my friends with encouragement. The chemo itself was fine.... The day after I felt pretty good, actually worked from home for about 5 hours, a little nauseous but not too bad and took my compazine.

Gave myself the stupid shot Wednesday night and it's all been downhill from there. I hadn't read up on taking the Claritin.....wish I had.... I was up, in excruciating pain all night.... Called the doc this morning and was told I could take some ibuprofin...and Benadryl, which helped a little.

Sux.....cause today's my son's 2nd birthday.....and I haven't even gotten to see him. Thank GOD my parents live close and could take him for me but I miss the little bugger and it sucks that I couldn't wake up with him on his birthday.....

Also went Monday and got 20+ inches cut off my hair....which was pretty depressing. I know it'll grow back but......

Hi everyone, I had my port put in on Monday (in the arm), started chemo (TCH) on Tuesday. TCH every 3rd week for 18 weeks, herceptin every week for 18 weeks, then every 3 weeks for total of a year.

They pumped me up with anti-nausea infusions and a steroid prior to the chemo itself (Emend, Aloxi and decadron).

I seemed ok on Monday, just a little tired. On Tuesday I went in for my Neulasta shot. The shot itself was uncomfortable but tolerable. Later on that night I started getting sore. Wednesday, Thursday and today have been progressively worse in all over pain and soreness. I haven't felt too much nauseousness, just a bit queasy every so often. I am also taking Nystatin 4x a day (to ward off any mouth sores) and l-glutamine twice a day (for 3days).

I'm not sure, but it certainly seems like I probably could tolerate the chemo, but the Neulasta is impossible, lol. I really hope this pain goes away soon.

bonnied -- Thanks for the welcome and the eating tips! Everything is happening so fast (chemo before surgery) that it's hard to keep up with the bits and pieces. But I'll get there... or it will get here and I'll just deal! Either way.

It's good to know your hair isn't falling out quickly! I hope my hair will stay in for a while after my first chemo, since I'd like to get a wig before it goes. And pick up all the OTHER info I need to get through this in the best way I can.

leftyloo -- I haven't cut my hair yet, but I think I understand. Since my diagnosis, people have been saying stuff about how strong I am and how I'm on top of my doctors and treatment, and of course it's meant to be encouraging, and of course I'm really NOT any of those things. I'm a quivering wreck inside and feel like I know nothing about anything and am totally unprepared. The only good thing about all of this hitting so hard and fast is that I haven't had a second to think and have just been running around from one thing to another. But in those seconds in-between... scary stuff. But I still have to keep moving on.

Good wishes to you and to trying to stand up to your tougher-looking exterior! Be fierce!, even if it's mostly just on the outside!

Dakotawoman -- I'm going to try not to read facebook when I go for my first chemo! I'm sure I'd be crying my eyes out. Every time I check FB, all those lovely encouragements just make me tear up like nothing else! I guess it's because it's hard to be given encouragement when things seem so uncertain inside ourselves. And, hey, it's just a kind of sweet-tear-making thing to have others say good stuff to you (or me, at least! I don't like attention much, so this whole thing has been crazy on all levels).

I hope you're feeling better and future treatments go smoother. And you'll be there for your son on the next birthday (and in years to come) when he will actually remember stuff!

KillTheCancer -- I'm getting a Port in Monday and Wednesday my first chemo. I haven't heard about any steroid shots to be given. What are steroids for? (I feel so ignorant!) I'd go look up, but I still have to do a ton of stuff before Monday--like arrange a RIDE, pick up the meds I need to take... I have NO idea what those are... something to take day before/day of/morning after chemo... I know MO was talking about Neupogen for white blood cells (prophylactic)... but ...

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oh crap... gotta go take care of some appointments and contact MO... be back to edit later! Got two calls at once--one from Radiology and pre-port info and the other appt for a scan that must be done pre-chemo!!! didn't get either resolved yet. *sigh*

april - the before, morning, and day after meds are the steroids - usually dexamethasone/decadron.  Steroids are two-fold, for anti-nausea and to help with allergic reactions.  You will most likely also be given steroids with you IV premeds given into your port.  Neupogen is an injection you start the day after chemo to boost your white cell production to allow you to fight off an infection.  Chemo kills your blood cells as well as cancer cells, so some people become low enough that they pick up an opportunistic infection, Neupogen (daily injections) or Neulasta (one injection) helps prevent that issue. 

Claritin is thought to help with bone/joint pain associated with WBC boosting drugs due to the antihistamine controlling edema in the bone marrow.  Bone marrow is where white cells are produced - and the bigger the bone the more the discomfort.  So, hips, pelvis and leg bones can be achy, some people also have shoulder and jaw pain.  I recommend Claritin, Aleve and very warm baths but check with your oncologists on the meds first.

SpecialK -- decadron... yes, I think that's what I'm supposed to take before/during/after. I haven't even picked it up yet! Thanks for the info on the claritin.

I haven't had the Chemo class and still haven't had time to watch the dvd yet... I guess I should ask my MO about getting numbing stuff? Any other things? ... oh, geesh... I'm still freaking out here... I am trying to handle things, but I have papers all over the place with names and numbers and notes and I can't find things... and my house is a mess and I need to go to the bank to put some more money in my checking. Still need to find a ride for Monday Port procedure. I have no confidence they'll hook me up with a good port... yes, I'm paranoid, but it seems like I have to keep on top of everything, and I don't even know what I'm doing. I'd go to pick up the xanax but I haven't had time and I can't afford to not be on top of things, when a lot of stuff is still being set up...

Sorry. Getting a bit vent-y here. ... Just... I haven't even had time to eat today. Good thing I ate more regularly yesterday.

Thanks SpecialK. I called the doc and was told Aleve, Tylenol, Benadryl and a warm bath.....too bad I don't have a tub.... However, I took the other three about an hour ago and am feeling better than I have in over 24 hours..... Next time I'll definitely take the Benadryl or Claritin prophylacticly (sp?)...... Now if I can get a little sleep.

On a different note my parents are watching my 2 year old and brought him over for his birthday today and within 15 minutes of giving me a big kiss (not sloppy) he puked his brains out....and kept throwing up for the next hour.... Hoping he's not got anything contagious....

Thanks, SpecialK. I guess I'm freaking out a bit because I haven't had surgery first, so the cancer has had all this time to spread around... AND because there's a LOT to get up to speed on between diagnosis and treatment (Chemo first, in my case). I just spent the whole day on the phone trying to get things set up and haven't done anything else... only ate a bit of guacamole and chips and had part of an ice tea and a little coffee. And I'm here checking things between phone calls so I can try and keep my sanity...

I'm actually wanting to get the first chemo cycle over because I might actually get some rest after it (or at least be nauseous while lying down!).

Not to mention that I haven't picked up around the house for a month and there is stuff lying around everywhere! And my stupid fridge is acting up so I'm wary of keeping food in it. Freezer works, so that's OK. And stupid landline isn't working! First no calls coming in, but calls out OK, now static and hearing other phone calls. I called ATT, but no help so far... *sigh*

Radiation folk probably tried calling me back on the landline and couldn't get through...!

Thanks again for being the calm voice of reason and knowledge!

Oh, I think you did mention that to me before, SpecialK. About the time between dx and surgery... My memory is terrible right now (although it's never been that good!).

wheely - get a tube of Aquaphor, put some on a q-tip and put a blob up each nostril, then pinch your nose and rub to distribute the Aquaphor. 

wheely - absolutely, even in grocery stores.  Sometimes it is in the first aid area by Vaseline, and I have seen it with the baby diaper rash stuff.  If you have Vaseline, go ahead and use that.