**NEW** Starting Chemo March 2009

PattiB

Maidmarion - Is that your daughter in the picture with her hand holding buddy!!!  These pictures have really siked me up, you can be my hand holding buddy!!!

Janet - Hair - I am not on the same cocktail as you, but I wanted to hold onto mine as long as possible.  The thought of looking different made me know I would feel very self conscience about the alternatives.  My hair loss started lightly on day 15 by day 17 (a friday) a lot came out in the shower and blow drying/styling.  Sat much more, Sunday I lost the longer layers and it felt really thin, I was afraid on Monday I would have bald patches and didn't want to take off another day just for a hair crisis.  So Sunday I called my friend/hairdresser and she fixed my head and my wig for the next day when I went to work wearing the wig.  I cried Sunday and debut day Monday but then got over it and have now embraced the bald and wear the planetbuff "buffs" all the time.  I have been on break from work for chemo and spring break so I'm not sure what I will wear when I go back.  If I didn't work for the public I would probably never put the wig on again but I do, so I'm just not sure (I work in an Elementary School and have the children to consider).  Anyway, that is my individual experience and everyone is different and has different feelings about it.

PattiB

Welcome Stacey

Buddy - I love your new picture

NanaA

Finished round 3 of my weekly taxol today. Onc was happy with blood tests for liver function.  All had improved over last week.  He is worried the steroids could be causing a stomach ulcer since I have had one before caused by aleve.  Was not supposed to ever take anit-inflamtories again.  But they won't do chemo without them.  He has me seeing a gastro doc on Thursday afternoon.  I am borderline anemic and even taking iron is not keeping up, so probably bleeding from an ulcer.  May end up with a transfusion or 2 before it is all over.  Just another steroid SE.  I must admit I only had to give myself one shot the first week from the steroid induced diabetes, and that was this am after taking 5 steroid pills last night at 10 p.m.  with food to help the stomach  so I knew it would be high, but it was only 20 units over the limit where they want me, so he was happy with how the week went and does not need to see me for 3 more weeks.  Yea!!  I just go for labs and then have he chemo and herceptin unless something shows up in the blood work that they take to him before I start.  I lost 5 pounds by watching my carbs on the diabetic food pyramid this week.  Only positive SE to this because I am  overweight.  I could lose 5 pounds every week for the next 10 weeks the steroids will keep me diabetic and still need to lose more. He did tell me to try benedryl for the acne rash, which I am taking tonight because it may make me drowsy too which will be a good SE against the steroid high.  Just more surprises on the ride.  Annette

michele54

Wow ladies, it's really hard keeping up with all of you.

Gina - what are we going to do with you?  You are the leader of this crazy group and we need you strong.  Hopefully your docs figure something out soon.

bwbly - I'm doing the opposite tx and taking the Taxol first and then AC. You sound like you are tolerating it well.  What anti nausea meds are you on and do you have any tips?

chick717 - hope you are feeling a lot better.

sakura - I TOTALLY agree with the Biotene mouthwash.  I use it faithfully and other than tx my taste buds are pretty good.  Water still takes like water but I do get a salty taste once in awhile. I didn't realize they had gum so I'm going to look for it tomorrow.

Now the Miami Ink thing - We have to do this.  I'm wondering if TLC or A/E or one of those reality chanels would do sponsor it or do it as a special.  Maybe they would even design a tat for us March Warriors.  I'm definitly up for another one especially symbolizing our journey.  If you all are serious about this, I can do some research and maybe write some letters.  What a great way to get all of us together. Hey PattiB we can fly down to Miami together.

vangoghpro

Hi Ladies,

Took a few days off to celebrate my birthday and managed to end up with my second feverish state so far. With the fever this time, i got a bit delerious but the tylenol/motrin combination did bring me back to somewhat normal.

In a parking lot a few days ago, I saw an elderly woman with a patchy bald head. She looked pretty bad; my husband and I both looked at each other and said almost simultaneously "That will be me/you in a few days." Today as I sat waiting for my appointment at the optometrist, I put my fingers through my hair and quite a bit of hair came out. So much for the nurse saying I would only lose 30%. When I got home I took the scissors to it and gave myself a short crop. When my husband came home he gave me a short buzz. I look like another person, but I really did not want that patchy bald look.

Nasharayne,

Yes, we are on the same plan. I see that you too have had some similar SEs to me. The heartburn and diarrhea continue to be terrible (even with OTC meds) and the fever can be quite frightening. On day 13 my hair loss began, what about you? Tomorrow I will go outside my home for the first time with my new shorn look. I plan on walking my horse all around the stable and I will probably wear a buff with a cowboy hat on top. Anyone who did not know I have cancer will soon find out. My horse saw a chiropractor today and so he is not allowed to run tomorrow - he and I both.

After my new haircut, my male golden brought his tennis ball over to me and plopped it on my lap. He doesn't care if i have hair or not - he just wants to play ball. Ah!

Hope everyone is gearing up for a chocolate filled weekend (for those who can still taste it).

Love Linda

Janet0527

Regarding anti-nausea, I'll add a vote for Emend. I get it by IV with my tx along with Decadron, then take both by pill on days 2 & 3. I've only had one tx so far, but had absolutely no nausea at all. I'll see soon if it works as well with tx 2.

Patti - Thanks for the description of what happened with your hair. Regarding the kids, my mom teaches elementary school and she lost her hair a year and a half ago during chemo for pancreatic cancer (which she has survived now for over a year and a half - one of the single digit lucky ones). Anyhow, she wore a wig for awhile but eventually ditched it when she had just a little growth coming back in. The kids really didn't care at all - she got a couple questions about what happened to your hair and a few honest comments about how strange it looked to be so short, and that was that. You could stick with your buffs and when the kids ask you about it, just tell them your hair fell out from medicine you're on, and I'll bet they won't lose a beat.

Michele54 - I am 100% totally serious about Miami Ink. I already was planning to get a tattoo as soon as I can after chemo, and doing it there with a group like this, well, wow, that would be awesome on many fronts.

I made it out salsa dancing tonight - what fun, though I ended up with hair in my mouth a couple of times, because it was falling out of my head - just a few strands here and there, but I know this is the beginning of the end on that front. Of course I feel pretty good because I've only had one tx so far and it was almost two weeks ago. My next one is tomorrow. Yikes. New side effect - my taste buds were a bit out of whack already, but I now have a strange salty/metallic taste in my mouth. Yuck. Note to self - buy that Biotene mouthwash that everyone is raving about.

annadou

First chemo done-so far so good-little nausea-got the neulasta shot coming up this afternoon

Nice sunny spring day here in Greece

Hope you are all ok 

Hugs 

Anna

Dawnmrn1

What a busy thread, Good Luck to all having TX today!  You've talked me into to getting the biotene! My mouth is just a little sore!  Does anyone get neupogen for 7 days after Tx, I did, had blood drawn, saw the onc yesterday my wbcs are still low, 3 more days of neupogen and no work this week I am a nurse, he doesn't want me exposed to anything, me either. Next cycle he may give me neulasta, more expensive , but may work!!!! Any thoughts between the 2.  I know neulasta is $11,000 and neupogen is $650 a shot. Any comments would be helpful.  Have a great day!  Dawn

NanaA

Greetings to all of you having treatments today.  Hoping you all are well enough for your treatments and have a SE free day.  Annette

kim40

Count me in for the Miami Ink!  Sounds like fun!

Janet 0527 - Salsa Dancing!  That is one thing that I have never done but would love to do.  I'll have to con my DH!  I hear you about the hair thing.  Mine was the same way - I was out to my cousins house and the wind was blowing in my back and some hair went into my mouth.  The next day I got rid of it all as I was shedding all over the place!

maidmarion

PattiB  No that wasn't my Daughter...she was taking the photo...She wouldn't have a tattoo,  leaves all that to her Brother, she just likes the guys from the show. I will happily be your Buddy!  I agree Michele54 it would be so good on many fronts.

bwbly

michele

drink LOTS! i usually have dry mouth the day of and 1 or 2 days following, so makes it easy to drink. the 1st tx i was constipated for 3 days, then diarrhea overnight. the next week, the diarrhea hit 2 am following tx. yesterday, it came at 8 pm.

and nobody told me about chemo poop ...... boy does it STINK. you'll know when you're done with the diarrhea because the smell will drive you from the house .... and possibly from the neighborhood LOL. and it BURNS. keep some baby wipes handy. I also will use a preparation h cream just for the pain relief.

fatigue is there by the end of the week, but manageable.

i take Zofran for nausea, with Compazine in between if required.

Bunny

PattiB

Maidmarion and Michele54 - I really like those guys too.  I was hooked on the show a while back when they showed it often on TLC - Now they seem to always have shows about huge families and multiple births.  It's ok, my 18 year old daughter was hooked on John & Kate plus 8 last year, it kept her out of trouble.   I can't wait a Flight Buddy!! (Michele) and a Tattoo Buddy!!! (Marion), Yippeee!!!   Michele - my next time at Penn is Wed. 4/22, How about you?

Mom of Boys - Hope everything is going OK, I miss your words!!!

Gina - Hope your feeling good today, too!!!

PattiB

Janet -  I live in the neighborhood of the school where I work, and walk my dog constantly if it is nice out.  Gradually, I have been running into our families on these outings and they really do seem to be OK with whatever I'm comfortable doing.  You are right one boy did ask me about my hair and that was my response.  He just shrugged and walked away.  The Salsa dancing sounds like a lot of fun, keep doing what makes you happy!

nasharayne

Hello Ladies,

I'm still so far behind on the posts since I was down for so long.  I'm reading gonig backwards so I'll catch up eventually.

I had tx #2 yesterday. Everything went ok.  I was a little worried about having a reaction to taxotere but, I was fine.  My mag was low so that added two hours on to an already long day.  My hgb was 8.7. My onc likes to transfuse under 9 but, I felt so good he decided to wait.  I go weekly for herceptin so I get a cbc every week.  They told me I will probably need a transfusion next time because they don't expect it to get better. Every time I go to the onc I always end up being there most of the day. For extra fluids, mag, potassium and who knows what else. With my 25% dose reduction I am hoping for better days ahead. I will be getting nuelasta later today  I don't think my insurance will have a problem approving it to avoid another hospital stay like last time. 

About Caffeine I wasn't told to avoid caffeine but, they did tell me it doesn't count in your daily fluid count. For that reason alone I avoid it but, that's easy for me to say because I wasn't a heavy user anyway.

Vangoghpro - I use Nexium for heartburn.  It's an RX and a little pricey but, it is so worth it. The only time I had a problem was when I forgot to take it.  An hour later I was back to normal. My hair is thinning but, I still have most of it.  I wear my wig because it's cute and I don't feel like doing my hair.  When I go to the onc I generally wear a scarf.  I'm a low maintenace kind of girl so I go for the path of least resistance.

Crusader 1 - Loved the pic

Chrisc433 I get Aloxi via IV the day of treatment then I use EMEND for day 1-3.  I generally only get nausea when I smell something really bad. (my nose has been extra sensitive) A peppermint mostly does the trick or I have Zofran for a back up. All in all nausea has been kept in check.

Michele54  - I am down for a tatoo.  I don't have any but, I would love to experience it with my fellow Warrior Princesses.

 Marshall2000 - My posts are too wide also, I have to scroll over to read it all.

 Gina - Im so sorry you're having these reactions.  I know they will find that perfect cocktail for you.  You pick out such great ones for us!!! Thanks for being our leader.

Buddy1 - When my mouth is uncomfortable I just don't drink.  Oh wait that got me in trouble with dehydration.  I have tried bomb pops.  They have all that sugat but, it feels so good.  Right now I'm on day 2 of tx 2 and I can't get enough to drink.  Soooooooooo thirsty.  I hope this passes soon for you.

Hoping for us all to have a wll controlled SE week!!!!

buddy1

Hi gang.  Need  some more advie??? I was up all night with terrible leg and hip pain.  Hours it was terrible. I also had diahrea and received fluids yesterday for dehydration.  I know I was still dehydrated.  Do you think this was from being dehydrated.,  lack of potasium or the Nuelasta I got on Wed.  Also I found a pea size know in my under bicep area.  I hope its not a blood clot.  maybe its still my nodes draining.  Did anyone have this?

Anonymous

Nobody tells you about the chemo waste,

It's too embarrassing to say.

You wonder why there's gas and cramps all around,

You wonder how you made your bathroom smell that way.

Nobody tells you about the exit strategy

Of things that were injected and piped in

Nobody tells you that your hygiene routine will change

No body tells you not to stand down wind.

Love in Christ,

Sessna1

Dawnmrn1

Hi buddy1!  Go for the gatoraid, it will give you some much needed electrolytes, and take some advil.  the lump is probably a node, do you have a fever, if you do call the onc! the pain is probably a combo neulasta, and dehydration SE. Try to dring as much as you can stand! Hope this helps, good luck! Dawn

nasharayne

For those diarrhea sufferers or who have the after effects.  I started using Preparation H medicated wipes.  They are much more soothing and they are flushable unlike the baby wipes.

Buddy1 - I haven't had nuelasta yet but, I did get nuepogen while in the hospital.  I also had a low potassium during this time and my legs hurt like crazy so it may be a combo of both. It only lasted about two days for me so, maybe there is hope in site for you.

Anonymous

Ladies and gentlemen,

I am asking the indulgence of any nurses on the boards.

Ladies, do you sometimes find you have a "disconnect" with your nurse?

You will remark some fact about your SEs or conditions, and they will contradict you or say that one thing has nothing to do with the other.  Example:  I was on the bathroom floor my 1st Cycle, 5th day, with what felt like a fever.  My nurse said that it probably WASN'T the meds, I probably did have a fever. ????  A fever that lasts 5 hours on the bathroom floor?

Also, I said to my last physician, "My backpain increases right before my monthly cycle," and she said, "It's probably just a coincidence."

????

It's like, it's like nurses have hearing-cognitive problems.  Are they trained to do that?  Run the program, go by the book, stick to what you know from training...

Between that and the oncologists, "Kill the cancer and forget whatever else killing it triggers, unless you end up in the hospital, then we'll put off your next treatment.  Full speed ahead!"  I think that we really have to be aware of what they are doing and writing in those little charts.

Love in Christ,

Sessna1

pickle

Tattoos....Great idea. I would totally get it done. I don't have a tattoo and it hasn't been on my top ten list...until now.  I bet those Miami Ink guys would design it for everyone. Michelle54 if you are willing to take the lead on this I think we should see how many are seriously interested and get some correspondence going. That would be amazing!

Dry Mouth and sores- I was told at my chemo class to brush 4 times a day. Floss lighty in case platelets are low and rinse 6 times a day with club soda. I have been using club soda everyday and I haven't had any issues (but I've only had 1 tx so far) It's cheap and doesn't taste bad either. Glaxyl based cream or lip balm for dry lips works well.

Caffeine: They told me I could have 3 cups a day but with every cup of coffee I have to add an additional cup of water to my daily intake because coffee is a diuretic and dehydrates.

Dehydration: Have you tried pedialite...I know it's for kids but it replaces electrolytes as well.

Metallic Taste: Someone suggested using plastic utensils and staying away from strong meats like beef. Apparently beef increases the metal taste.

MOB and Gina: Wishing you a good day today!

Exercise: I truly marvel at all of you that are out for daily walks, dancing etc. You have inspired me to take a litlle walk on my treadmill today. I was going to yesterday but I left it until late in the day and by that time I sort of hit the wall with fatigue....probably worse from doing nothing all day!

Hair: I decided that I will get it buzzed on Good Friday. I don't want to wait until the strands are coming out next week. I used to live with my brother and his family years ago and my niece got leukemia at 3 1/2 years old.(she's 31 now) It was really hard to see the strands on her pillow and nightie every morning. I think that's why I just want to get it done...plus...it feels like it will be another thing off my list....one step closer to getting it all done. I have a wig and some head gear but I don't think I'll have a problem going commando once in a while either.

I love the honesty in the posts on here....stinky poop...lol! What a fun inspiring group!

Positive thoughts are being sent to all of you for a SE free week. 

Silly thought of the day: "Does the Little Mermaid wear an algebra?"

Beth P

crusader1

Gina,I just love your new avatar. You and your daughter both look great..Hope some of your allergic ractions have calmed down..

Michelle..Wow that is some great idea about us meeting after our chemos and someone making a documentary of sorts about it. I have never thoguht about getting a tattoo but the meeting part sounds great..

Buddy- Great new photo. Hope you are doing better with your treatments.

MOB - How are you feeling? How was Chemo number 3. Mine will be on Monday..

I use baking soda and salt to prevent mouth sores. So far I have been lucky and have gotten lazy about doing it . I do change my toothbrush very often. I bought cheap disposable ones at a dollar store.

Hair question for all..I shaved off all my hair when it really started to fall out. Now it is beginning to grow back in and is sort of prickly. It does itch now whereas it did not before. I put some cream on it last night and it feels a little better. I had been washing it with soap but I think that may have dried it out. What do you fellow baldies do?

Another question. I have worn my wig a lot and now want to wash it. The Feel Better lady suggested woolite, condtioner and then towel dry. What have you done?

Stay well ...Easy SE's for all

Hugs to all.

Francine

nasharayne

I just went to get my nuelasta shot and I asked if it was ok for me to try biotene.  They gave me a sample of the mouthwash, gum, and toothpaste.  So for those of you that want to try it you may get a freebie. It doesn't tell you how often to use the mouthwash.  How often have you all been using it?

 Sessna1 - I am an RN. It's funny that you asked that because at the beginning of this ordeal and now I had so many stories to go back and tell my other nurse friends on how it is to be a patient.  I've never been a patient until now so, I had no idea what it was really like.  I  may have been a little insensitive now that I look back.  I don't work at the bedside anymore but, I can pass it on to my friends that do.

pickle

Hi Francine. Is your wig synthetic? The place I got my wig from had shampoo, spray in conditioner for after its dry, and hairspray specifically for synthetic wigs. The instructions that came with the wig said to wash once a week. Soak it in cool (not warm) water with the special shampoo for 5 mins. Rinse well. Pat it dry with a towel. No wringing it out or twisting. Put it on a wine bottle to dry overnight. I asked "why a wine bottle" and she said not to put it on anything larger than your head or it stretches. The wine bottle is perfect for it and then when you're all done with treatment and t wig you can pop the cork and celebrate! Once the wig is dry you can just brush and style (no heating tools of course).Another thing they cautioned me about was to not wear it while cooking over the stove or opening a hot ove....it could melt.

Hope this helps.

Beth

Dawnmrn1

Francine! My wig lady gave me shampoo and conditioner and told me to soak it in the sink and swish it around  alittle and do the same with the conditioner, then pat lightly between a towel and put it on the wig dryer head she gave me, and let it dry over night. She said every 2 weeks is plenty, I don't wear it everyday and ten on for 6 to 8 hours, it's all I can take, it is okay but I hate having anything on my head. My hair is growing too, I just wash it daily in the shower with body wash, and it doesn't bother me at all. I bought the Biotene this am and it is more soothing than the baking soda.Dawn

marvil

Dawn-  During my 1st cycle my WBCs dropped low to 1.3 on day 9 and doc prescribed 5 days of neupogen shots.  The shots worked really well for me and I felt better quickly with no bone pain.  Before 2nd treatment I got blood tested and WBCs were normal ...10,000...so shots worked.  Only problem with my blood counts were my elevated liver enzymes (ALT and AST) which I don't think are related to neupogen shots, but rather the chemo drugs.  Doc said my bilirubin count was normal so chemo #2 went as scheduled.  Instead of waiting for the blood test this 2nd cycle, my onc has already prescribed 7 days of neupogen beginning day 5.  I am to get my WBCs tested the last day of neupogen shots.  I have never taken the neulasta shot so I can't comment on them.  But the neupogen seems to have worked for me the first time...the only inconvience is the daily injections at home if you are not trained. This won't be an issue for you though because you are a nurse.  My mom, who is a nurse, gave me the injections at home the last cycle...this time I plan to do it myself after getting lessons at the hopsital.  I know everyone has different situations but what ever course you take I wish you well!   

Dawnmrn1

Hi Marvil!  My insurance company won't pay full price for me to give the neupogen to my self, it is cheaper for me to go to the nurse clinic 5 miles away, no biggy, it is $650 per shot as opposed to $1000, for me to do it, it is crazy, but I am complying. The neupogen worked the first time for me too, and I'll find out Friday,about this round and hopefully will have no appts and be "NORMAL" for 10 days before my next Tx.  Thanks, for the input, and best of luck! Dawn

gymmom8

I just caught up on reading so I'll throw my comments in a general way because I don't remember who asked all the questions. LOL

I am on AC and had tx#3 on tuesday.  I am a little nauseas today.  The fatique is starting but not too bad.  My sis is in town visiting and we took the kids to a paint your own pottery place and then out to lunch (it's spring break here).  We had a great time. 

My cut my hair short on day 8 and it started to fall out on day 14.  When I was in the shower I couldn't believe how much was coming out so I kept playing with it and more and more came out.  Day 16 my dear hubby gave me a buzz and the next day in the shower most of it came right out.  I am left looking like a baby monkey because I still have little wispy hairs that don't seem to want to leave me.  I assume they will all fall out now that another treatment is done.  I am happy to say I still have my eyebrows and eyelashes.  YEAH! 

I get the neuprogen shot on day 2-8 and by day 4-5 I am quite achy.  Motrin seems to do the trick to me.  I also can take tylenol in between the motrin. 

My WBC's were pretty low after tx1 (1.5) and after tx2 they were up (2.6) so hopefully they will be okay after this treatment as well.  My liver function is elevated but not a worry spot yet.  I think there are a couple other markers that they are monitoring but nothing of concern. 

I can't wait to be able to say I am halfway done.  One more AC to go then 4 taxol. 

I have a "magic mouthwash" prescription for mouth sores and metalic taste.  My mouth gets pretty bad by the 5-7 days then clears up then gets bad again then clears up again.  Just like the rollarcoaster we are on.

I will try to keep more up to date to post specifics to everyone.  I hope everyone has a great afternoon and evening.  Here's to no or only a few SE's!!

Hugs and kisses to all!1

Cyndi

gymmom8

Chemo brain is in effect here.  I have trouble typing and I just deleted one of my posts.  Of course I can't remember everything I wrote.  LOL

Cyndi

gymmom8

Oh now I remember some of it. 

I am a no for getting a tattoo but I think it is a great idea to do a Miami Ink show.  If I am unable to come on the journey, I will at least watch it!

My bra size prior to mastectomy was a 36A.  I am asking the PS for a little more this go around and he is willing to enhance/lift the left side to closely match the new right side.  Great news for my hubby!!

I have been unable to wear a bra since my surgery due to lympodema of the breast/side.  I can't even wear a cami.  They are too tight.  I went to Old Navy and purchased multiple tank tops in various colors and am very happy with them.  I just have to be careful what shirt I wear over it because I am very lopsided (even though I am small chested). 

I think this is all I wrote but can't be sure because I just can't remember.  Anyone else having memory issues?  I am also much more clumsy. 

Cyndi