Starting Chemo July 2013

Rambo50

Mouth sore suggestion: 1 tsp Maalox + 1 tsp liquid Benadryl

Worked for me!

GraceB, I know what you mean - "when it rains, it pours!"  Hoping 3 things will be enough for now ;-)  Hugs to you!

Angela, I'm worried about your weight loss!!!  You've gotta keep some pounds on to fight this beast!  Have you tried Ensure or Boost?  There are days when all I can do is bland food - oatmeal with some extra protein powder works when I KNOW I need to eat something but just don't feel like it.  Hang in there!

Welcome, Karkar - I'm sure you'll find great support here!

angelanature

Thanks Lynne,i can't totally blame it on chemo,whenever i'm stressed i just have no appetite,though taking the steroids this time helped alittle,i love icecream but even that tastes bad,if it continues i will try boost or ensure.Villa u cracked me up today laughing is the best,laughing at ourselves even better. sorry Grace about your kids,my hubby had kidney stones,its scary to watch someone u love in so much pain but sounds like it over so hang in there and lots of cranberry juice for ur nonaffected daughter. Hugs to all.Angela

Hannariggs

Thanks for the encouraging words angel. I needed it.  My throat is so raw.  I hope they dont postpone my next infusion but I dont think I could take another hit at this point.  Praying for the neulasta to kick in........love to all

Nocompromises2013

I am a firm believer that chemo weeds out the weaknesses your body is already prone

If you have had any occasional minor but chronic afflictions thru your life. Eg acne, rashes, occasional wisdom tooth, prone to constipation. Etc just name your weakness and chemo will sledgehammer it

IMHO

RealityCheck

LOL Vilia I'll be right behind you if I start having the eyes, the constipation, the diarrhea or the skin stuff. I've had the mouth sores so I don't want those again next treatment. They were the worst. I used lots of chapstick and neutrogena lip balm for the chapped lips.

I had a lady ask me today if it worried me if people stared at me...I told her no it doesn't bother me a bit, if they need to look let them look, if they ask the cancer question, yes I'll be more than happy to tell them what adventure I'm going through and how it's affecting me. She opened her mouth to reply and didn't say a word for a minute, then she said "You are so brave" I said "I don't have a choice", "it is what it is and I'm dealing". What say you girls? Any questions like that posed to you?

Heal ON Ladies, Heal ON! xoxoxoxo

Pattysmiles

Reality check, I wonder what answer this woman wanted? Or expected?

Strange to ask such a thing....was she expecting you to say it DID bother you so she could tell you it shouldn't?



I have had only one stranger comment to me,Moshe started with "are you going through treatment"? When I answered yes she told me she is a five year survivor of ovarian cancer. We chatted while on line at the store. She was very nice and wished me well.



As for "worrying" if people stare? Never, not my problem! In fact half the time I am out I forget I am wearing my buff and "look sick".

Whatever will be will be....

Pat

puppymama09

Daisy, good luck with your 2nd tx, at this point I dread getting another tx, especially when it seems several of you have said you were told the 2nd is a lot worse? Did I read that right? 

Angela, I am so glad I gave you a good laugh,  Reality, thank you for giving me a good laugh with your ealier post about people wanting a picture of you with you shaved head, your response cracked me up!

Well today I woke up feeling a little bit better, then i decided to call the center because I have started getting mouth sores and the whole lining in my mouth feels irritated, they wanted me to come in, they were concerned that I had thrush, such  pain to go there live over an hour away.  I went I don't have thrush but did prescribe magic mouthwash and another powder or something for a small rash I have.  I got really depressed today thinking I don;t know how I can go through months of this.  

still have all my hair at this point, only a matter of time.  Oh and Kraker, welcome to our group!  Sorry you have to be here. Grace, so sorry about you kids, my youngest son is at his friends house for several weeks, I miss him but I know he is having a great time and it is such a releif to not have to worry aoubt taking care of him right now.

puppymama09

Karkar, so sorry I think I called you Kraker, anyway welcome,   

Hannariggs, so the 2nd is a lot worse?  I am just on my first it has been 8 days and still not doing that well, cant even imagine working, so I am strting to get really concerned about the next tx.  So sorry you have strep throat, that is so painful.  hope you get over it quickly.  

Vilia

RealityCheck, I do understand where that lady was coming from.  Before all this, I'd have thought I would be a basket case, but it turns out whether it's naivety or something more dubious, at this point I can handle it.  Before, though, when I saw people that were obviously going through chemo I didn't know what to do or say other than just act like nothing was abnormal.

I have to say I am really touched by how people rally.  I had a phone call the other day from my friend in England and we talked for a long time.  We've known each other since we were eight ... basically grew up together, and it was great to hear from her.  Another friend pretty much invited me to be a part of her family by giving me a special "energy" bracelet they all wear (because everybody's got .. something).  Another just surprised me with a delivery of Godiva chocolate cookies shaped like hearts.  That creamy chocolate feels soooo good on my sore tongue and what does a person need when they're feeling under the weather .... chocolate, right?  The most touching gift actually came from the receptionist at my husband's work.  She can't afford much, but sent me a pink pen she'd bought with me in mind.  For some reason that actually made me cry!  All this in addition to all the cards and meals that have been sent.

Anyway, in many ways I feel quite blessed and, you're right, you have no choice but to handle it as best you can.

Nocompromises2013

Karkar

PPE is a similar manifestation of the hands and feet. Typically seem after administration of some chemo drugs ( although more usually the AC. Regime)

Was it definitely hand foot and mouth? Or PPE. If PPE be aware it may come back with round 2. They suggest a slower infusion rate or keeping hands and feet COOL. Maybe do a little more research ???

Good luck hope it doesn't reoccur

NC x

Karkar06

Sue, this is exactly what the doctor admitted me in hospital and I are worrying about. I got checked by a dermatologist while being hospitalized and he said that's typical hand foot and mouth symptoms. Later I found out a colleague of mine got hand foot and mouth at the same time as I did, So we can be a little more sure. I sure hope it won't come back! Fingers crossed.



Angela, thanks and hope you can gain some weight soon. Puppymama, no worries. Lynn, exactly! I was prone to skin rash since I was young. RealityCheck, my rash doesn't happen until day 10 or 11, doctor said its caused by dry skin and not an allergic reaction



Thanks to all ladies for your encouraging words! Good luck!

SheilaB330

Hi Ladies!



Round was fine except for the delay of the lap work. My number ls were up on white blood cell thanks to Nulasta. the red was low but wirh acceptable range. It isn'tanemia due to lack of iron so not rwcommending I take iron because am post menapause. Platlet were ok. All in all rhey were happy with how well I liooked and how I've done. She is extending the steroid for a couple day so hope it knock more naseau. Going to be shaving head tomorrow. We didn't get home until 6 so wipe out. Friend had made us a dinner so thank God for good food and good friends. Nice to line up aeal rhat you can jjust heat up on chemo noght.

All of you ladies, good night sleep well. Love Sheils

daisy72

Puppymama, I was very worried about this round (#2) I even sat last week at my MO and cried in his office saying "I can't do this again, I don't want anymore chemo" he said.."IF you were 81 I'd say OK, but your 41, that's not an option. We can't go back later and do a redo, this is our only chance to get you cancer free, YOU HAVE TO FIGHT! I will get you through this treatment even if you have to come every single day and get fluids. Now tell me what you need to help you fight?" I said NERVE MEDICATION! At that time, this round worried me so bad all I did was cry and cry. I couldn't imagine doing it 3 more times. So he put me on some nerve meds and gave me xanax, and boy what a difference it has made! It calmed me down to feel like I can do this, I want to be cancer free. I can fight my way through this! 

I know some people aren't big fans of nerve medication, I've never been either but during a time like this I knew I needed something to help calm me and get me through this 'journey'. I hardly take the xanax at all. I only take them when I feel like it's going to be a really bad day, and they help a lot. 

Today's round went good, in and out nothing major. I had a good talk with my main chemo nurse. She was telling me to take my nausea meds around the clock the first 3-4 days even if I felt I didn't need them, start using my magic mouthwash before i felt any pain or soreness in my mouth or throat, and to drink 96 oz of fluids a day to try to prevent dehydration, and to start taking constipation meds now to keep that from happening again. So I'm doing all that earlier, hopefully it'll help. 

WE can get through this, we are tough woman! i'm so glad I have ya'll to talk too and read about everyday, It makes me feel better that I'm not the only person going through this! Thank you!

Anonymous

Hi All,

I started yesterday for a recurrence and am inthe August 2013 Chemo Sisters group.  You all have so much great advice.  would you drop by the August group and give us your best tips?

Thanks!

V

lark

Hi everyone. I haven't been on here much because of these darn constant headaches. I have a question. How do you know if its a sinus headache? I know some people said that sinus meds helped. I haven't done that because the ache is across my forehead and at my temples. I've never really had sinus problems before so I don't know. If it is a sinus headache what has helped? Advil helps some, but they never completely go away.



Daisy, I'm so glad for the attitude of your dr! He's so right that we have to take this opportunity to fight it hard, especially because of your age. And asking you what he needed to do to get you through it was the perfect question. And good for you for saying what you need.! So glad it's helping.



For anyone dreading round 2, I hope it encourages you to know that for me it was slightly better than the first. The hardest part for me was losing my hair and now the headaches. Im so grateful that I haven't had more serious issues and Ive been thinking of all of you who've had it worse. A friend told me she felt like there was something a little different that came up with each treatment. But she learned from each one and was better prepared for the next. Have to admit that I'm not looking forward to round three next week. But that means I'll be halfway through the AC so trying to keep perspective.

angelanature

Hi All,woke up crying this morning(had a dream iwas horseback riding and the wind and motion of the horse had my long beautiful hair bouncing and flowing in the wind) reached up and felt the stubble and burst into tears. Here i am fighting for my life but crying over hair.Ang

Hannariggs

Puppymama-the 2nd infusion was worse for me, but for each person it is different.  I think babyruth said it right. If you had any issues before the cancer, the chemo seems to escalate it.  I have always had issues with my sinuses and throat all through my life(should have had tonsils out as a kid).  Since my infusions, seems like the chemo hits them first.  I totally understand wanting to quit, and on my last infusion cried in my mo office because I didnt want to do it.  I am sure I will do it again this time because I really feel crummy.  But like all of the sister have said its round 3 and then only 1 left.  Just so hard to imagine getting through it.  But we will do it!   White blood counts have been down so havent made it to work which makes things worse.  I know several women who have continued to work all through their treatments.  God Bless them!  Wish I knew the secret. You never know mama, the next treatment could be easier or the same as the first.   I have and will continue to pray for all of us.........

LanaM

Lark - sorry about your headaches, glad #2 was better.



Daisy - reading your post made me cry - also reminds me of a saying I like "you don't know how strong you are until strong is your only option!"



Sheila - glad #2 went well.



Karkar - welcome!



No compromises - everyone benefits from your pharm. knowledge!



Vilia - I agree people are very thoughtful & its wonderful to have the support!



Puppymama - don't panic about #2 - think positive!



Angela - hope u r feeling better and not losing to much weight.



Grace - they say things come in 3's so u should b good for awhile!



Realitycheck - I like your response! We need to be open, honest & proud warriors!



Hannariggs - hope your throat gets better fast.



Rambo - how r u doing?



I go for #2 this morning - thinking positive thoughts that it will go as well as #1 and praying for no SE's! Wore my wig yesterday but found it a little itchy and a little warm. Think I'll go for a scarf today! Went to get fitted for prothesis yesterday and she told me I have some lymphedema - guess I'll have to watch that - any advise on exercises, etc.?



Stay strong firecrackers!

2bluestars

Hi Ladies!  Getting ready for infusion #2 today.  First I see the mo, which I'm excited about, I feel like my tumor has already started shrinking, so I'm looking foward to hearing it from him.  Then off to labs and chemo starts at 2pm.  Not really nervous about it, but will be on pins and needles the next few days waiting/wondering if the se's are coming.  I feel like I got off pretty easy with the last infusion, hoping for the same this time.

Went out for the first time yesterday wearing my wig.  I felt ridiculous.  My hair isn't that "perfect" and felt like I had a neon sign pointing wig, wig, wig.  So now I'm not sure if I'll wear that today or a scarf, which screams cancer patient.  grrr!  :-)  I did order a more casual wig from tlc called Rachel, which is pretty close to my style but it's taking forever to get here, not really, I'm just impatient.

Thinking of and praying for all!

angelanature

Stopped crying after my hubby not knowing what to say to chear me up,said the funniest thing,"Get on breastbook and tell ur friends". I told him i already did while he was in the shower,who needs facebook when i have a group of sisters going through the same thing. Breastbook,that just cracked me up. Lark,this headache thing started right after my first tx and hasnt ever really gone away,same as u,across the forehead and the left temple,i asked my onco and he said if it was sinus the claritin im taking for nuelasta should have helped,it didnt. I also wondered if it was the zofran but cant be because its still there days after i stopped taking zofran,so my only conclusion is its from the chemo.Luckily i havent suffered from any mouthsores yet,is that a se of my 5 round when they change my chemo to taxol? I want that magic mouthwash on hand if thats the case. Another ? my onco wants me to get my rads at procure(proton therapy) because my left side(over my heart)will be irradiated,anyone know anything about this,Marsha? Ang

LanaM

2bluestars - I can so relate - u and I are on the same chemo schedule and both TN! Only difference really was my tumor was larger & I had mx already! Everyone said my wig looked great, I just thought it was a little uncomfortable. I know a scarf may say "cancer patient", but I'm proud of what we're going through and how we're fighting! We are strong women and survivors and I don't mind if people know that I guess. I hope today goes great for both of us and anyone else having chemo today! Relax and take it easy. Hope everyone has a wonderful weekend!

Nocompromises2013

Hi firecrackers

I had #2 today also. Nit with out a chemo moment on the way in. I got too distracted doing girly stuff ( shaving my chrome dome - soo much better than a 0 buzz cut ) and cutting the fringe on my wig ) that time escaped me and instead of being out the house at 8.30 I left nearer 9.15. Only 30mins till appt and a 60 min journey ahead of me. Ooppppps

All went well. WBCs bounced from 0.1 ( day 10 ) to 5.3 day 21. So pround of the little buggers WITHOUT neulasta yay. The bad news is that CIA my tooth flared from days 7-14 coincides with nadir. So she wants me to have neulasta thus time (( and I never took any claratyne. So I am going to act as your placebo ladies and since only 26% of patients show bone pain I will play the % although this forum worries me cus it seems a lot higher here. Yikes



Infusions all good once they found a good vein ((( ended up in back of my hand this time after attempting my arm great considering I forgot my ELMA today and it would have been in the wrong place - chemo pharmacist !!!!!!!



Claratin will not help sinus' pain unless it is due to hayfever. They do in AUS make a combo called Clarinase here which is loratadine and pseudo ephedrine that might be a better choice for cytoxan sinus. even plain old pseudo on its own if your MO allows



Also going back to neulasta and claratin they also make a desloratadine version that is stronger/ more effective than loratadine for hayfever and therefore might be even better for bone pain. its called AERIUS here in AUS and made only by claratin manufacturers.



I wore my wig and was only one. Others all had scarves ( or very good wigs !!!!). I feel self conscious but everyone tells me it looks really natural.

Good luck LanaM hope all goes well

Have a great weekend peeps

NC x

Rambo50

Quick update (LanaM, you're way to "with it" keeping up with all of us :

Day #3 out from Round #2 (A/C) - doing okay, just a bit tired and achy.  Took some Tylenol and hope that will help.  Can't believe I forgot my Claratin last night!!!  Took it this morning and may take again tonight just for insurance ;-).  Zofran today through Sunday - worked last round so my fingers are crossed it will again!  Throat is a bit sore and I'm doing the mouth swishes with Biotene and Maalox + Benadryl - hope I can avoid any sores, etc.

I start work on Monday, and will attempt a day "incognito" from cancer!  I'll be around all new faculty colleagues, will wear my wig, eat lunch (perhaps!) at the college president's home, and try to "fake" like I'm just another newbie ;-)  Folks in my department know my story, but NOT this group!

Sue - glad they got a vein, good luck with Neulasta, and I'm sure your wig was just gorgeous!

2bluestars - yahoo for tumor shrinkage!!!  Good luck with your infusion today

Angela - my literature says mouth sores can come from Adriamycin and Cytoxan too, glad you've avoided them!  "BreastBook" - LOVE it!!!

Daisy - I'm SO glad your onco stepped in with such great support - you CAN do this!!!  Hang in there girl ;-)

Sheila - glad your round #2 went okay as well!

Hugs to all!!!

Lynn

momx2

Hello to all mg fellow sisters. Haven't been around in awhile . My mom passed unexpectedly burial was on Monday , I needed my mom but god had a different plan

Round to of A/C yesterday wiped me out could barely stand ,today a little better but still weak .

All my best to you all XOXO

encyclias

Momx2, sending my deepest sympathy to you and your family.  Losing a mom is a terrible thing.

Carol

soriya123

Hi To All Lovely Ladies,



I will have my TCH round 2 on Aug 7-next Wed, I'm scared. I hope not worst than the first, since the 1st round, I had it pretty bad. I'm scard just thinking about round 2.

Vilia

Daisy72, I feel for you!  Sending strength and energy your way.  You're halfway through and that's gotta be good!  Hang in there!

Lark, I seem to keep getting this low grade headache each day, too.  I've noticed my eyesight is blurrier and maybe it's to do with that.

Angelanature, you're making me cry!  My hair was getting so ashy and dry-looking, anyway with the grey coming in, so losing it won't be as big a deal for me, but for those of you who had beautiful hair, my heart goes out to you.

Momx2, please accept my condolences on your loss.

Rambo50, glad your second round didn't go too badly so far.  Good luck on the job next week.  My daughter and I will be doing orientation next week when I should be feeling a lot better.  I've asked about tutoring help and been told I'll get an answer next Thursday.  Just not sure how well I'll be able to homeschool right after treatments.

Everyone else ... most of you sound like you're two down, four to go.  I hope things get better rather than worse ... you sound so strong, I know you can do it.  I won't get my second treatment until the 15th.  Saw the oncologist today and he had some good news for me.  Apparently, unbeknowns to me, my regular gyn did a test to see if I was genetically prone to colon cancer, considering I'd had endrometrial ... and I'm not!  Whooohooo!  Now I can relax about getting a colonoscopy until after all this crap is over.

The Nystatin seems to be helping my sore tongue and inner lips more than the magic mouthwash did, so I'll keep going with that for now.

It sounds like each treatment brings it's own problems.  Not looking forward to it.

TwoHobbies

Momx2, I'm so sorry you have lost your mother.  It is never a good time, but this seems particularly unfortunate timing.  You are in my thoughts. 

Lark, if I press on my eyebrows or under my cheek bones in the middle of my face and it hurts, that's sinuses.  I don't usually have any temple pain with sinus.  If you think it could be sinus, maybe you could ask if you could take a sudafed and if you feel better in a few hours, it was sinus.  It will take maybe a good six hours for it to help.  And Nocompromise is right, the claritin won't help unless you're taking Claritin D, which you have to get behind the counter from the pharmacist (at least in my state).  Another thing to try is steaming over a pot of water.  If that relieves the pain, it seems like sinus and you might want to try some meds.  For me, nothing gets rid of the pain except sudafed, which you're not supposed to use all the time, or a prescription nasal spray. Nasonex is my friend. Another thing to check is if your jaw hurts?  This could be TMJ which could cause headaches also.   

Daisy don't be ashamed of the Xanax.  Glad it is helping you.  This is what medications are for.  It's not a weakness, it's your body chemistry.  It would be weak to ignore it. 

2bluestars, I also feel like I have the neon sign, wig, wig, wig.  My natural hair is quite fine and this wig is not! I sat in the chemo chair yesterday looking at everyones wigs and to me, they all look like wigs, so we're not alone.  But I still feel better with it than hairless.  BTW, I am a NE Oklahoman by birth, and although we moved when I was six, I spend many a summer and spring break vising my aunts, uncles, cousins and grandparents. 

Angela, I constantly see the girls with beautiful hair and I'm jealous, jealous, jealous.  But I also notice a lot of people's hair doesn't really look that good so they make me feel bettter!  LOL.  Maybe we will enjoy rocking the short hair. I love the breastbook moniker!

 Has anyone's glucose gone up during this treatment?  I believe it is from the steroids but it kind of upset me.  I get certain labs right away, and then they send out the rest.  So I got the report yesterday and my last glucose was 130, and it happened to be a fasting glucose. 

Another question for those doing rads.  When are you set to start post-chemo?  I have to do rads but I haven't been to the RO yet.  Guess I should schedule that. 

soriya123

Momx2, I'm so sorry for your loss. Please take care of yourself. I will pray for you and your family during this difficult time.

sarajaneevans

Re: Wigs... I went to what was touted as a professional wig store- paid $350 for a wig that is CRAP- the head needs to be measured so you can get the right size I discovered after the fact, and while doing some research- the store should well have done this for me if they are so professional. They will not refund or exchange, say they have a no exchange, no refund policy when I called them,-signs are posted in the their shop,they said. I asked if it ever occurred to them to them they they are dealing with people undergoing treatment who are most likely not feeling their best and might not see their little signs that are posted- Perhaps if customer satisfaction is a priority they might think about 'VERBALIZING' this policy to their customer while customer before the sale is finalized! Live and learn.....

I purchased another wig online at tlc for $50 -I absolutely love it! and you can exchange it and get a refund if not totally satisfied.

The first time I wore it out, I felt normal. I told my husband,

"People are staring at me and thinking one of two things

either,

1. That lady has one fine looking hairdo......................

or

2. Who does that old hag think she is fooling with that wig? 

LOL, LOL LOL..I chose number 1 (:"

More expensive in this case was not better and at this price I can have a few more (:

http://www.tlcdirect.org/Default.aspx