Jan 2008--Ain't it Great?

wvgirl

Well weekend went by fast I am so glad I have another day off.

Been pretty tired.

Yesterday am when I got up to go the the bathroom my legs gave out and I feel hit the top of my foot on something (have a pretty big goose egg) I hope the swelling goes down enough to be able to were some shoes to work tomorrow.

Carol I have been having night sweats too. It feels like Aunt Flows on here was here too.  Glad you have a good day

Paula Hope your cough is better

Vettegal Hope your doing well WOW what a scary thing to go through

Theresa Glad to here from you. I agree triple neg is scary. I have read that after 5 yrs the chance or recurrences if really low.

DI Hope you have a great weekend with dd b day. My girls were 19 in Jan they sure grow up too fast. When I was at the look good feel better class. They were talking about finger nails and said some people use Olive Oil.

LJ13 Hope the antiob is kicking butt.

DianeB

Suz: After everything you have been through, it is only normal that you would feel depressed. I am looking at the same long road ahead of me and I get depressed too. It is something that will just never go away. Many prayers going you're way!

golfer779

Hi Jewels, I just got off the phone with a fellow b/c gal in my community.  I'm planning on meeting her on Thursday so we can yak it up.

If any of you gals on AC x 4 and then Taxol x 4 can help her out, that would be great.  She is starting her treatment next week, and as we all know the unknown can be scarier then the txt.  I'm personally probably not the best resource for info as my CMF regimen is so tolerable and has not had the se's so many of you have had.

Maybe some tips of what to do prior to her appt (nausea meds, etc)

So, if anyone can assist that would be great.  She has posted on the Help Get Me Through Treatment topic.  There is a thread entitled Washington Ladies/Men????  Her screen name is "Vz mom". 

I keep telling her how great our group has been and the support we can share with each other.  Would really like to help her ease her mind in any way.

I'll be back later, going to lunch with a out of town friend I havn't seen in quite a while.

Thanks, Carol

deb102307

I have been down for the count.  Not from se's but somehow I managed to have a tooth abscess.  My dentist is working with me to get it under control so maybe can buy some time since I know you aren't supposed to do dental work during chemo, and so far it is keeping it at bay.  Seems I heard someone else have trouble with a tooth.  It would be great if they could tell me what happened again.

I am nowhere caught up with messages yet.  Will try to read more later.

Hope everyone is keeping the se's at bay this time.

Anonymous

Carol, is her ACx4 Dose Dense (every 2 weeks) or every 3 weeks?

sheshe48

Hi JJ,

just checking in, I have a lot going on right now. I have been sick it seems like forever, I have ran a temp for over 2 wks now, its low grade low. I couldn't get my chemo treatment on the 14th because I have been so sick, but my blood counts were fine. I don't like the cancer center I have been going too, they don't treat you very nice. So now I have stopped my chemo and I'm transferring to a closer center. I went in there on Fri and everyone was so nice, even the patients looked happier. The atmosphere was so different not so cold. Instead of almost 100 miles one way, it's only 11 miles one way. I feel so dumb, I did not know there was a place closer, and I did not know if I could switch from one health system to the next. I just got fed up. I have been sinking in depression and it's not worth it. Every day when I call my old cancer center, to ask them when I can pick up my records, they put me in voicemail. The last thing I want to do and drive down there and make a scene. But I have to get on with my treatments.

To everyone sick with sinus and chest infections and depressions and just not feeling good, I'm sending you some good vibes.

Hope everyone is getting through their SE's ok, and good luck to this weeks jewells who have to get another round. I'm thinking I won't have a treatment again until March. I meet my new chemo oncologist Feb 26th for a consultation. I was wondering if anyone else was having problems with their cancer centers?  I really liked my chemo dr. I will miss him. I was treated so well by my surgeon and the hosp, and so dissappointed in the cancer center at the same place. I guess I just have to move on. Have a great week everyone

(((((((((((((HUGS)))))))))))))))))   sheshe

CarolC

Hi Jewels,

Just checking in after a weekend of pretty much being offline due to just extreme fatigue and the continuing neuropathy on now both feet. Don't get me wrong - it was much more tolerable than when it started, but still difficult to put on shoes and walk much. I pretty much tippytoed around the house and slept and read.

I also had chills and this constantly runny nose - went to work this morning til noon and had to come home because of the fatigue and achiness.

For some reason while I type, every few words gets deleted. Is there something going on on the site?

I'll check in again later but wanted you all to know that I just finished reading everyone's posts and caught up. Sending positive energy to you all.

Carol

SISKimberly

Good Afternoon Jewels-

The site is sluggish again this morning. I’m going to take my notes and respond later this afternoon adding gals that posted while I was gone. Waiting for the carper cleaner and repair guy.



Jackie- Glad you checked in to say hey. Bummer about the wbc, but good thing you’ve got time to take your antibiotics and get them back up before Thursday. How sweet of you to throw your hubby a little 50th bday bash with the Nascar 50th Anniversay theme…very appropriate.



Yeah, listening to your body really is key. And now that you know how your react, you’ll be better prepared for tx #2.



D1- I’m so glad you had a good weekend with the college girl and that you sound up!!!! You last chemo will be done already…wow!!!!



Kris- I’m so sorry you’re feeling so crappy…I wish there was something I could do for you. Get lots of rest…drink fluids…Tylenol for the aches and pains…make sure you check in with the doc if that temp goes up. ((((gentle HUGS))))



Carol- Glad to know that slow server thing wasn’t just me.



Yeah, getting in all the stuff before tx #3 wrestles me to the ground. I went to the house again this morning to wait for the carpet guy. He gave me a window of 9-10 for arriving, so I called at 10:15 to make sure everything was OK…not lost or something. Got his message machine…I didn’t mind…I was cozy on the love seat I gave to Jon from my office…now in his little living room/dining room area reading a great book- A New Earth…Oprah’s Book Club choice…really on the lines of what my heart and spirit have always known…inspiring. She’s offering a free 10 week class online, so I think I’ll sign up…should be interesting. Anyway, he told me right before I called to check if he was lost, he got a call from his Dad about his Uncle and Aunt, who he stated he wasn’t really close to. His uncle had a heart attack this weekend, and his wife died two days later. Talk about a freaky one, two punch…so my new philosophy of not sweating the small stuff came in handy.



I’ve got the night sweat thing going on too and fear I’m going to get my period this week…of all times…it is a reminder that estrogen is alive and well surging in my body…which is good for my body…and unfortunately also good for my cancer.



How sweet of you to help out your neighbor by getting input from our AC x4 then T x4 gals.



Whoohoo on the good golf swing and the nine holes…and not having to squeeze your butt cheeks. LOL



Julie- I had the same experience…it took forever to finally post!



KathyL- Yep, it is slow again this morning…so I’m waiting to post this until this afternoon.



Glad to hear you don’t have to wait in huge lines to register your daughter for Kindergarten.



We could collaborate on a book even if we are bi-coastal. I’d love to do that with you.



Thank goodness for the dh who takes the kids to preschool then comes home to work on the honey-do ‘cause I don’t know how to list. My dh is amazing with chores like that…he knows things that just amaze me about all aspects of construction- home and landscape…on top of so much more stuff.



Wvgirl- I’m sorry you’re feeling so tired… and falling and hurting your foot on top of it all…geez! I’m worried that your legs gave out on you…are you sure you should be going to work if you aren’t steady on your feet?



ARDeb- Man, our Jewels are just dealing with flu, cold, falling injuries, and tooth absesses…I hope your dentist can help you deal with that. And yeah, another Jewel has a root canal…I can’t recall who that was either off the top of my chemo brain. ((((Hugs))))



SheShe- Way to take control of your own health care!!!!! I’d make the trip to get those record unless your new office will take care of getting them. Have you called your new office? I would also send a letter to your old oncologist and let him know what you stated about liking the care you got with him, the surgeon, and the hospital…but not liking the chemo cancer center and why. They need to hear this, or they have no reason to improve.

My hospital and health network send me surveys to find out how my experience has been, and so far I’ve been very pleased with my care, but feel if I wasn’t happy, they’d take what I had to say into consideration. So maybe being sick- not that I’m happy about you being sick for two weeks- was the universe giving you the kick in the rear to make this much needed change. I like to look for the message. 100 vs 11 is a huge help on so many levels- gas, time, and your energy spent.



CarolC- I’m glad the neuropathy is better than it was, but still not sounding too good to me. I’m glad you listened to your body and came home early…I’m hoping the boss seeing you tip toe around and looking really tired sends a strong message that not everyone handles chemo as well as her friends claim they handled it. Take care sweetie.



Weird about the every other letter thing. I compose in a word document as I read posts…easier to recall what was said that way, then cut and paste it in when I’m done. Try that.



OK, so I’m off to TX 3 tomorrow….I’ll check in before I go.



Have a good night all,

SIS Kimberly

Vz_mom

hullo,

I'm poking my nose as recommended by Carol.  golly, you guys are wonderful!!  I've spent a good three or four hours over the last couple of days reading your posts.  I start my chemo on the 28th, and I don't have a choice about taking time off - I'm the one with the insurance, so I HAVE to stay at work, regardless of how I feel.  plus I have a 5 year old and my dh's 83 year old grandmother.  mercifully, he's self-employed and an excellent cook.  so, may I pick your collective brain?

I will be doing 4 rounds of AC, followed by 4 rounds of Taxol, with a shot of Neulasta the day after each treatment.  I'm getting rather anxious about the Neulasta pain issues I'm reading about, but not about to pass it up, given its other benefits. 

I'd like to know what your issues have been with each drug, and what worked for you to alleviate it.  the issues I've been picking up on (in no particular order) are mouth sores, constipation, dragging fatigue, body and muscle pains, sleep deprivation, taste alterations and loss of appetite.  oddly enough, I don't recall much discussion of nausea - do the meds work that well?  I have sensitivity issues with Benadryl, so any alternative suggestions there would be helpful too.

I've come across a few references to a "chemo bag" as well.  what do you take to your treatments that helps?  how much water do you drink and when?  I've seen discussions of as much as 1.5 gallons a day - is that only the day before, of and after chemo, or is that every day?  I already drink about 90 oz a day, and frankly I'm not sure I can double that on a daily basis.

thanks in advance, and my apologies for the long ramble and request for assistance.  feel free to PM me rather than take up discussion space here, since these are issues you've all figured out.  thanks again, both for the answers and just for being here.  be well...

Kalen

golfer779

Kimberly, is your cape, tini glass, shirt and hat ready to go?  Go get um tomorrow and show "C" who's boss!  Taking pictures???

Well with my great communication skills I must of come across as having suffered night sweats.  Well to the contrary, I meant to say that I "think" I'd rather endure night sweats than the period from hell.  Bring on the chemopause, please!

Kalen, hope you get some good info, we'll see you on Thursday!

Carol

Vz_mom

gonna add one more question...

what happened to your sex life?  what personal product(s) do you use to help the dryness factor?  haven't seen much discussion about this issue, so perhaps it goes on behind the scenes, but I'd really appreciate the input.  thanks again!

Kalen

Cathy-CA

Kalen -- I'm not on the combo you will be using, so can't give you information on those specific drugs, but I will address the Neulasta. My onc has me take a Claritin 24-hour the day of the shot and for six days after. The theory is that the pain is caused by an allergic reaction and the Claritin decreases that. I have had no problem with pain. I have recommended this to several others who had problems with the first shot and they had significantly less problem with subsequent shots.



I have an Aloxi infusion as part of my treatment and have had no problems with nausea. I don't know that I would've had a problem without it, but it definitely has worked for me.



Hope all goes well for you and welcome.

LilWarrior

Jewels,

Tommorrow is my day for the MRI of my Liver - so please pray all day for me that Gods healing and for deliverance of this Cancer they think I have in my Liver.  I pray as well!  I will keep walking in faith that I dont have Liver Cancer.  

I am getting closer to having Chemo - YEA!!!  Sorry I havent been able to talk and walk with you thru your experiences and help you out with any remedies.  I wish I could have been there more for you Ladies besides crying, and complaining about my problems.  I wish I could have been there for all of you!  Sorry, but hopefully I will soon!

God bless you - getting ready for bed and I am going to keep each and everyone of you in my prayers!  Keep your head up high!

Hugs,

Dana 

SISKimberly

Hey Kalen- I PM'd you. Glad you stopped by.



Carol- Yes, I'm ready with all of my Super Girl paraphenalia in my backpack with my book, my pink lap blanket, water, some crackers and an apple to munch on as four hours requires a snack. I'll be wearing my hat and FUBC shirt. I'll have my twin sis take pics.



CarolC- How's the Neuropathy?



Dana- No worries on not being with us during chemo and understanding what we've gone through,yet. You've supported us even not knowing. And as far as whining and crying...HELLO...that's what we are here for...and for your good news,too. I'm thinking Negative on the liver cancer!!!!! Thinking about you tomorrow sweetie as I swig my tini.



Nighty Night,

SIS Kimberly Man, I've been making lots of typos in my last few posts...what's with that?

CarolC

Oh gosh sisters...i feel like such a whiner. thanks so much for asking about the neuropathy. It does seem to be getting better every day. Not sure if it's just a cyclical thing that comes along for a few days or if i have to stay on the meds.

But  I'll find out today because after feeling like a truck hit me all day yesterday and dragging myself out of bed, I finally took my temp. I know I should have done it before but I didn't feel like I had a fever. This morning it's 100.9. I'm waiting for the docs office to open to call - he told me I'm to come in immediately if it hits 100. It's always freakin' something with this chemo journey, eh?

Funny, I have a fever but I'm sitting here with a pounding headache, chills too. and then this runny, slightly bloody nose. Anyone else have that? I see several of us are going through some uncomfortable se's this time. It actually crossed my mind this morning to go in and say to my doctor "I quit"!!

Dana, you're in my prayers that you don't have liver cancer. Anyone having tx today - just remember it will be over in a few hours. And to the rest of you - I love you Jewels - what a gift to have this group for support.

Carol

RN2teach

Hey Jewels,

SIS Kimberly- go get 'em today. Hope your tx goes well!

VZ Mom- welcome! I've just finished round 3 of AC. IMO it is very doable. I have managed to work thru each round until this one, and I'm blaming my sick days on this respiratory bug.

I've been lurking through the weekend. Tx 3 seemed a bit heavier in the fatigue dept. Prob d/t this dang cough--still interfering with my sleep. I took yesterday off from work and am going in 1/2 day today. I need the morning to get myself together, so glad that I have that option!

Sending wishes for good health to all the Jewels.

Paula

Wing

Good morning Jewels,

Very tired from work last night it was so busy with school vacation, on my feet for 5 hrs, and the temp was 88 inside oh boy was my bald head sweating under the rug!  I'm thinking about calling in tonight I'm so tired already and its only 8:45 am.  Luckily Mon. was a holiday so its double time pay which helps since I carry the Ins. as my dh is also self employed which has its perks except for ins. which cost and arm and a leg for the little guy.

Dana, I'll be thinking of you tommorrow I'm praying for good results.

Kalen, welcome to the group you were lucky to find this great group of strong courageous women as I recently have, no one truly understands what we are all going through unless you've been there done that and truly understand.

Best of luck for anyone having chemtinis today, one more under the belt!

Carol, Hope the neuropathy gets better for you today.

WVgirl, I hope things settle down for you soon I can't belive what a hard time your having.

For all the moms with little ones, you are true SHERO'S I don't think I could do it all!

Have a good day all hope the se's are few and far between.

Wendy

KathyL

Good morning Jewels!  Hope the site isn't as temperamental today...

SIS Kimberly:  Good luck today! 

Sheshe:  Sorry to hear about the changes you've had to make mid-tx.  I agree with Kimberly that you should definitely write a letter.  It gets things noticed at least.  Let us know how things go with the new center and when you'll restart your chemo again (dates).

CarolC:  Both feet now?!?  So unfair...  I hope your new med. keeps the n-pathy under control.  Maybe some nice new fuzzy slippers?  How's it gonna be at work-- can you put your feet up, or cruise around on your chair?

VZMom:  Welcome.  I don't have the same meds. as you, but will pass on some tips.  One thing's for sure... you are a busy lady!  You will find you have to slow down and prioritize or your body will force you to.  It was a very hard lesson for me to learn, but necessary to get through all this.  Keep in touch with support (whether it's us or somewhere else-- this is a life line and no one will understand what you go through better).  Round one is a "test round":  you prepare the best you can for SEs, but really will not know what you'll get or how it will hit until the first round is over.  Then you learn from it all.  Drink A LOT all the time-- you seem to be doing this already.  Find something for the constipation: you've read that here-- and start it the night before chemo.  The nausea seems to be fairly well controlled (with the exception of poor JulieK), by some IV antiemetic:  I get Aloxi and have to take nothing else.  I, too, am supersensitive to benadryl.  I have to get it now since I had a reaction.  I found that asking them to give me half the dose works (I told them how sensitive I am): the desired effect without knocking me out for the rest of the day-- try that if you need to take it.  Oh, the chemobag:  I pack: water, books or something to keep me busy for the 5-6 hrs. I'm at chemo, my I-pod, crackers or pretzels to snack on, and a blanket.  I take a different friend each time and have a "chemo party"-- yakking and catching up on things, being rowdy and having fun (might as well have a good time for the amount of time I'm stuck there)!

SISKimberly

Good Morning Jewels-

Quick hey...I'll comment on posts later...got to get ready for TX #3. I've got my Check Your Boobies hat, my FUBC t-shirt, my cape, and chemotini glass ready.



I was up until after 1:30 last night...darn Decadron. I got about 4.5 hours of sleep. Oh well, I'll be doing plenty of sleeping in a few days, and I will take my Valium tonight for sure.



SIS KImberly

golfer779

Kimberly, I noticed that you had posted in the middle of the night, your going to be one pooped out gal tonight.  We'll look forward to your pic ... bottoms up!!!

Carol

Anonymous

Kalen, on the water issue, I think you drink plenty of water to get you through. My nurses recommend 8-10 8oz glasses of fluids per day to stay properly hydrated/flushed, so you're well in the ballpark. No way should you double that amount ... you can actually get yourself into trouble with electrolyte imbalances if you get too much water.

I completed 4xAC every 2 weeks. Experiences differ from person to person, and also if tx is every 3 weeks bec. the dosages are different. Here's a typical treatment: go in for infusion. They give you Aloxi which is a powerful anti-emitic and Decadron which is a steroid, also anti-nausea and anti-allergic reaction. I also take an Emend orally just before the infusion, which is also an anti-emitic. And an Ativan, which helps with anxiety. The infusion itself was uneventful. They have you suck ice at one point to help prevent mouth sores. I am nauseated by the thought of ice now. I can snack on some crackers or granola bar during the infusion. I go home, am pretty tired, nap for an hour or so. I eat a light dinner and generally eat very bland and easy to digest foods for the next 4 days. Although the drugs keep you from feeling nauseated, your digestive system is still under attack from the drugs, and my belief is that your stomach knows it's sick, but the drugs keep your brain from knowing it and allowing you to vomit. Truly, that's how the drugs work. So I give my stomach the most gentle treatment I can for several days. I treat it as if I am recovering from a GI virus.

Ok, so on Day 2, I start to notice food tasting a little different, and water starts to taste 'off.' I am more sleepy than Day 1, and I nap a couple of times in the afternoon/evening. I still eat gently, smaller meals. I go for my Neulasta shot, it burns as it's going in, but that is the only discomfort I have from the whole thing. No bone pain, no spasms, no nuttin'.

Day 3, I am very tired/sleepy. I have no appetite. I eat what few things don't make me sick at the very thought of them.

Day 4, very similar to Day 3, though not *quite* as bad. The anti-emitics will constipate you, so beginning on Day 2, without help, you won't be going. Some ladies are proactive in dealing with this. I prefer to not rock the boat and I tolerate the constipation on Day 2 and 3, then start taking Senekot. It works the next morning. I take it again that night, and don't need any more after that. For me it is gentle and effective. Other ladies have used other products with great success.

Day 5 things start to improve, appetite a little better, but food/drink tastes remain "off" for several more days for me. After about a week, my butt gets very sore, and all the soft smooth surfaces in my mouth become rough. You have to be very gentle on these areas until the good cells killed by the chemo can be replaced. Eat as much protein as you can, this helps your body build those new cells.

Subsequent days see small improvements each day. I'm not really back to "feeling real good" until about Day 11-12 after treatment. Then it's time for the next treatment. AC is a very tough drug combination, and every other week is a tough protocol. You have to accept that you are on chemo and be very gentle with yourself and very respectful of what your body is telling you about how it feels. And even if it feels ok, go gentle, trust me, it's the best way. 

I have my first Taxol/Herceptin this Thursday, which I will get weekly (which will be a lighter dose than you will be getting every other week), so I will share my experiences when I get through one of those tx's, but my experience may not be a perfect match to yours.

mom2daughters

quick question for all you January warriors - I am still waiting for my oncotype test to come back but was wondering what is the time frame from when you went to the oncologist office to discuss treatment to the actual start date.  Do you have any further tests done, or just go.  I had my mastecomy 1/14 and know I have to start moving on treatment.  Is there a time frame that you need to follow as far as surgery dates/treatment, etc.  Thanks  Sorry for the questions, a whole lot of things whirling through my head.

LilWarrior

“And you He made alive, when you were dead in your trespasses and sins” (Ephesians 2:1).

Today's Word from Joel and Victoria

Aren’t you glad that Jesus came to give us life? Think about that for a minute right now. You used to be dead in your sins and trespasses; you used to have no hope. You used to live in fear. But once you accepted Jesus as your Lord and Savior, you weren’t dead in your sin anymore. You now have hope for the future. You are alive in Christ! God wants you to live life to the fullest today. It doesn’t matter how you may feel or what you are facing, start thanking God for giving you life. Even if He didn’t do another thing for us, giving us eternal life is more than enough reason to praise and thank Him every day. Thank Him for eyes to see and ears to hear. Thank Him for the air that you breathe. Thank Him for loving you and giving you life today. Praise opens the door to blessing. As you thank Him for the little things, you’ll begin to see God moving in your life in a big a way. He’ll pour out more of His favor and blessing on you, and you’ll move forward into the abundant life He has for you!

A Prayer for Today

Father, thank You for making me alive in Christ today. Thank You that I am new. Show me how to live every day to the fullest so that I can enjoy life the way You intended. In Jesus’ Name. Amen.

 

Just wanted to share my Daily word with ya!  Have a blessed Day!

 

Dana Dane with fame!!!  

Cathy-CA

Mom2daughters -- I started treatment about two weeks after meeting with the oncologist and going over the recommended treatment plan. Between that meeting and start of treatment, she had me get an echocardiogram, PET and CT scans. The echo was to check heart function prior to starting herceptin and the PET and CT scans were to verify there was no evidence of disease elsewhere. Had there been signs of mets, it is possible the treatment plan would have been different. I'm sure it varies a bit from doctor to doctor.

mom2daughters

Thanks Cathy-CA.  I had a bad ekg before my surgery, something to do with T waves, no clue.   But I am ++- so won't have herceptin, so maybe no other cardio tests - keeping fingers crossed.

Dana - loved your prayer for the day, needed that -

hugs K

Determined1

Holy moly, so much action around here!!  Shout outs first, then I'll share my news.

SIS Kimberly--Thinking of you today, girlfriend.  FUBC!!!!

WVgirl--wow!  What a scary experience.  When I'm having my dead ache bone pain after tx I walk around holding on to whatever I can find because I'm not sure my legs can really hold me.  I think they should issue all of us walkers with those tennis balls on the bottom for chemo!  Please take care of yourself.

KathyL--Tea tree oil, huh?  I'll have to see if I can pick some up tomorrow (hope it doesn't stink too, too badly...)  Already use OPI products on my toes, so I guess they're covered (bad pun, sorry).

Carol, you social butterfly, you!  Sounds like the golfing was divine.  I'm so happy for you that your se's are minimal.  It's nice to have someone who stays sane around here!

Deb, I'm so sorry about your tooth.  It seems to me someone around here did have a root canal or something.  I can't remember who, though.  Hopefully, they'll pop in soon with their details.  Please try to stay comfortable.

Sheshe--it does sound like time to make a change.  Stick to your guns.  Let us know when you get all your new dates straightened out so we can get you updated in the header.  We want to think about you in your new happy, infusion center.

CarolC--the neuropathy is a pain, isn't it?  Mine is still only in my lower arms and hands, and now almost only on the left side.  I just can't imagine it in the feet!  It does sound like you're coming down with something and I hope you've contacted your doc by now.  I also have blood in my nose (not a bloody nose, but when I blow, blood clots spew out--okay, that was gross).  It seems to be worse when my nose gets dry (I have dryness issues as an se).  I Q-tip my nostrils with A+D ointment several times a day to combat the dryness.  That hasn't alleviated the blood, but I don't have the discomfort and right now, that's all I care about.  Not sure if that applies to you, but there you go.

Fingers are crossed for a good MRI for Dana!!

Paula--yeah, the fatigue does get worse, doesn't it?  My dh came into the family room the other day and caught me just sitting and staring into space.  I told him I do that several times a day now, just to give myself a chance to recharge.  Take care of that cough--seems like you've had it long enough now that it needs to move on!

LJ13--as one of our AC experts, you did a fabulous job with your account for Kalen.  Thanks for taking the time to be so thorough.

Kalen--I'm not on AC, but I'll add some tips for se's.  Biotene toothpaste and mouthwash (found at Target) are good for helping with mouthsores.  I also added a mix of baking soda and water (I don't measure, just dump) which seems to really help that, too.  I'm one of the few here that uses Colace to combat constipation, which I start the day I have my infusion and take it till the day after I take the last of my steroids (Decadron) for that infusion.  Gives me awful gas (I just started taking GasX this last treatment to help with that), but I haven't been constipated.  I also have horrible issues with heartburn, so I take Pepcid AC from the day of infusion for about 2 weeks.  You saw earlier in this post about my use of A+D ointment (only downside is that you smell baby diaper smell all the time!).  Also, have a good lip balm and body lotion around--dryness stinks!  If you have other questions, please don't hesitate!

Mom2daughters--I had my last lumpectomy/anxially node dissection October 15 and didn't start chemo till December 27 (sought several opinions and waited on my oncotype score).  No one seemed upset by the passage of time (except maybe me).

Okay, I saw my lymphedema specialist today.  She's a sweetie.  She taught me all about le and gave me a huge list of do's and don't's (okay, that was sobering).  She measured my arms and said I already have some signs of le, so she's going to fit me for a sleeve and more importantly, teach me how to massage myself to keep le at bay.  I'm supposed to try to convince the dh to come in and learn the massage techniques, too, so he can do the part I'll need on my back (I have a pool of fluid on my shoulder blade).  Eventually, we'll also talk about bras (I have one c cup and one b cup now and my bras tend to twist around during the day--even my new Victoria's Secret one, which has me a little bummed).  Hopefully, she'll be able to help me get a better fit (or maybe I'll get my c cup reduced so they match, but that's more surgery--yuck).  I have 3 more appointments with her and we'll schedule more if I need them.  Between that and physical therapy and my other doctor appointments, it seems all I do is see specialists!

Well, I did find time to swing by my hairdressers to see if she could do anything about my wig.  She tried trimming it a little to give it more natural movement, but she couldn't do anything about the clumps of hair on the sides that make me crazy (they're the result of the alterations I had to have on my wig so it would fit me).  BUT the good news is that she's happy with the fuzz I'm growing and suggested that I make a hair appointment for the end of March!!!!  You guys, I was dancing in the salon I was so excited to make a hair appointment!  She said I could move it back if my hair slows down, but she thinks I might have a half an inch by then!!!!  Oh boy, oh boy!!  (I am so UNBELIEVEABLY simple, aren't I???)

Happy day, Jewels!

D1

KathyL

D1:  What great news all around.  I am so glad you have some help with the LE.  I'm sure the PT will help and massage will be nice!  And the hair is great!  Yippee!  How much do you think you have now?  I am so excited for you.  You should post some more pics when you get your hair done

golfer779

Hi Jewels,

Went to my pt appt this afternoon to find out it had been canceled, and they left the msg on my home phone, not my cel.  Oh well, I was a little sore from doing some yard work yesterday so I wouldn't have been a very good patient today anyway.

Read the days doings and had a couple notes ...

Sheshe, glad you we're able to get an onc office much closer to your home.  I cannot even imagine walking in to get chemo and not have the nurses there with their smiling faces and great personalities.   I would definitely at some point in time write a letter to your previous onc office and let them know of your disappointment.  I had a variety of issues with my insurance (Group Health) and wrote a letter with a list of my concerns.  If the customer doesn't let them know they have issues, nobody will.  It might not help you but hopefully will help others in the future.  I know that right now you probably don't feel like the hassle, but maybe you could make a note on a calendar for a later date to address the issue.  I received both a letter and a phone call from one of the "big wigs" from the customer service dept that I appreciated and it mellowed me out a bit.  It takes ALOT to get me spun up!  Good luck with your new center!!! 

D1, I could relate to the deer in the headlight look.  I think I actually catch myself doing the stare thing and it usually is accompanied by some forgetfulness.  Yesterday I had a couple of forgetful episodes, and today at work I noticed that I could not remember if I had called in to the dispatcher.  We're talking just over a couple of mins. I couldn't remember if I had called her or not.  Hope this doesn't get much worse over the next 4 months, I might need to share the bed next to my grandma in the dementia unit!

Hope that the massage helps, I have my dh massage me from the fore arm up to the shoulder and then across the back as well.  I measured a little bit larger on my surg side, but it might just be that I'm right arm dominant (those big muscles!!!) and thats my screwed up side.  We're you quite a bit larger on one side?  (That would be your arm, as you so delicately stated your hoots are lopsided!!!)  I put in for a referal for a sleeve, the referal coord sent me an e-mail today saying that it may not be approved as the pt has not diagnosed lympedema.  My thought is lets do what we can to avoid an onset of le, and I'm planning on flying at the end of March, so come on, pay for the sleeve and maybe I'll avoid numerous appt in the future.  I hope I don't have to write another nasty gram.

Dana, hope that your results are all negative (in a positive way) today.

CarolC, gal you don't need a fever on top of n-pathy.  I can see how your about to say the heck with it all.  Try to be strong, complain 24/7 to us, you can do this and WILL get through this tough time.  I hope you have someone locally that is helping you out as well.

Paula, I'm so glad you we're able to relay to Kalen that its a doable txt plan.  To know of somebody else that is working should help ease a little bit of the stress/anxiety.  We all have our problems with our txts but knowing that we can get through the ups an downs helps the journey.

Wendy, hope you we're able to take the night off.  What's up with the airport being at 88 degrees, that's hot enough to melt the "rug".

LJ13, wow, now that was some great info/advice for Kalen to sink her teeth into.   I would like to thank you and others for sharing with Kalen.  I knew I could count on this group to help out our fellow survivor!

Mom2daughters, I think your in good space as far as timing for your txt to start.   I was diagnosed in Oct, had mast in Nov, had AND in Dec and started chemo first part of Jan.  Throw in a PET/CT scan.  I'm sure your surgeon would suggest that you are healing up and feeling pretty good before started the chemo trip.  Come back anytime for more info, this group has a ton of it!

Kalen, okay nobody has approached the "sex" question, so my two cents, no problem with the plumbing working as the chemopause so often talked about, has not happened. 

Well I finished my 14th day of round two of oral cytoxan, yeah 2 down and 4 to go.   Note to KathyL and D1, start oral meds again on Mar 5th, with infusion on the 5th and 12th.

Going to Nordstroms tomorrow to get fitted for my new boob and two new bras.  Whooo Hooooo!!!  Hoping they have one that floats as watersport season is not too far off.

Carol

kris60

golfer779

Joan and Judy, forgot my shout out for a "uneventful" day at the chemotini bar tomorrow!  You go get um gals ... the light at the end of the tunnel is getting closer with each visit! 

Kimberly, my guess is that your either wiped out from lack of sleep or your on a steriod high!   Lets hope your valium produces sweet dreams!