January 2013 chemo group

Anonymous

Sorry I've been gone for so long - i had tx #2 last thursday.  I geared up this time and did everything I was told to do...and so far so good.  One trick my Oncologist recommended that i haven't seen on this board yet is glutamine for the taxol/taxotere SE's.  I take 10grams 3x/day.  I had to go to GNC and buy the $40 bottle because of the amount you need to take.  I started this a day before chemo and all went so well i'm still taking it 6 days after. 

Mandy - the story about your son breaks my heart.  Please keep us posted on what helps him.  My daughter is only 3 but acting a bit strange lately.  She keeps claiming to be "sick" and uses the word chemo on a regular basis (not appropriately but it's weird to hear that word come out of her mouth).

I am so sorry some are having such a difficult time with the SE's.  It really adds insult to injury....like going through this experience isn't traumatic enough.  Even though i haven't been posting regularly, i do keep up on the site daily.  You all are such an inspiration to me and definitely keep me going through this experience.  I especially enjoy the comedians on this site...hilarious.  I vote for a girls weekend when this is all done

LeeA

Fighter69 - regarding the gas/queasiness - are you taking Prilosec or Prevacid.  I started taking generic Prilosec at the advice of Sandra60 and I think it helped during the second round.  Although the package insert states 14 day cycles I plan on taking it throughout the entire course of chemotherapy (I've read others are doing the same). 

Martha - welcome!  Re: constipation - did you see the post about magnesium oxide?  I posted it a few days ago.  TonLee on the Triple Positive thread swears by it.  I'll look for a link to my post (which includes links to her posts) and edit it back into this post in a few minutes.  LINK: http://community.breastcancer.org/forum/69/topic/797712?page=54#post_3407607

Mandy - Everyone has such good advice regarding your son.  This must be so hard on him and any other child who is, as Bryona said, old enough to know something isn't right but not old enough to really understand what's happening.  Perhaps your pediatrician can recommend someone who is really good with this kind of therapy/discussion.  

SherylB - Welcome back from the Land of Ugh and hopefully, you're now on the upswing!  I have found that there's a state of near-euphoria that follows those "dark days."  

What I like about the Fage (note: that's just my preference - others may prefer other Greek yogurt brands) is that I can get the protein in without going through the arduous process of chewing chicken/beef/whatever.  Soft foods have been much more appealing to me but pasta doesn't have a whole lot of protein (darn it!) and that's what I found myself craving during chemos one and two.    

hope49

Welcome back, JulesDenver - glad to hear it is all going well!  I recall a few mentions of the l-gutamine...can anyone weigh in on what it helps with?  I have had minimal SEs but of course always looking to ward things off as I head into the 2nd half of my treatment.

Mandy, it is heartbreaking to hear about your son...sounds like you are taking the right steps to help him out, and I'm sure the therapist will really help sort things out.

Oliverhog, you have gone through so much and it's inspiring to me every day how well you can manage through all of it when it just seems so unfair!!!  Hang in there. 

LeeA, I think we are all probably somewhat surprised at how strong we have been.  I've gone thorugh more in the past 6 months than I ever could have imagined I could handle, let alone handle in a mostly positive way...lots of good lessons along the way, which I try to keep in perspective.  Would I give back my dx if I could - absolultely, but it hasn't been all bad and keeping focused on the positives I've gained through the experience has helped greatly. Thanks for the reminder!

On another topic, is anyone else doing radiation after chemo?  I will likely need to and just wondering is that something we are supposed to start looking into now, or does the MO help coordinate it?  More than one opinion?  Want to get started asap so I can keep things moving along as quickly as I can so it can all be behind me!

I agree a girls weekend at camp NOWBI would do us all a world of good once we're on the 'other side'! Think of the fun we'd have.

martha323

My mother's name was Mary Jane, SherylB, and I was named after a great aunt wo was called Mattie. We moved to a rural area in central NY about six years ago and I have met more Marthas here than any other place I've lived. I'm trying to figure out how to post a link to an amazing short video that I find inspiring and reassuring.

Anonymous

hope49 - i am very interested in the topic of radiation post chemo.  Radiation was recommended for me because of my positive node but I am really on the fence with doing it.  I'm sure i will i end up doing radiation because i tend to do everything the drs say...but the radiologist said it gave me a 3-5% less risk of reoccurance.  I guess i was hoping for something a bit more than that.  Although 3-5% is better than 0

I have TE's in place mostly expanded already.  My radiologist said they could do the radiation with them fully expanded...it's just a little trickier.  I have read in other countries they often do a lower dose of radiation.  I'm interested in hearing more about that.  I know I shouldn't mess around with this cancer thing - especially considering i'm triple negative.  I just want to know all my options before make a decision.  i have to admit the vain side of me does not want to wait 6 months - 1 year post radiation to continue my reconstruction.

Amrdbit

Bryona, 

I'm in the same boat as you with the anti neausea meds. My Onc doesn't have me on any chedule. She said take them as needed. I've never taken any b/c i've not been queazy at all. My advice for anyone else is to taper off them and see how it goes. If you don't need them, why take them? But.... if you need them, it's good to have them. Deb

Jubby

Hi Ladies,



Have been low profile for a few days. I am getting better and slowly kicking this cold's arse so woop woop! Had some shocking pelvic bone pain and my blocked sinus' are giving me headaches (and I am blowing out these icky snot clots! TMI) but I have been getting out and about and feeling more optimistic about # 2 next week. It's going to be a schtinklinly hot day today which doesn't thrill me but life's good.



I get my BRCA gene results today. Feeling quite anxious. It might sound weird but part of me is hoping I have it to explain why I have been burdened with the f*cker at such a young age but of course part of me hopes I test negative as the chance of recurrence is higher if I am a carrier. I'll let you know how I go. Also seeing onc today about managing GI probs after chemo.



Mandy, my son is 4 and a half and he had a really rough patch. Nightmares, climbing into bed with us and acting up. Crying at childcare etc. I see a shrink and she explained it's separation anxiety. Kid's are astute. Even if you say nothing, they KNOW!!! He is settling down now. Every child is different but we have found that for us being as honest with him as posisble (without disucssing the worst case scenario) has been very helpful. He has seen my breast (pre cancer) and post surgery and he has asked to touch it which I have allowed. It has helped him to see that I am OK and we have talked about medicine, injections and a myriad of other technical terms that we've dumbed down so he can understand. He's tried on my wig and hats too!



There are some AWESOME books out there especially for kids about BC. We read one called My Mum Has Breast Cancer. It's written by a young boy (maybe 7) and his mum and it talks about it from his viewpoint. It covers off chemo, hair loss, surgery, the works. It's an Australian book and if you PM me, I am more than happy to post you over a copy.



We're trying to keep it 'real' in our house without the doom and gloom and it seems to be helping.



ColleenKelly, hang in there.... it will get better. It's a cliche, but true.



Sorry to hear about everyone else having a rough time. Hope your neck feels better soon Sheryl.



And, blocked up ladies.... go the Miralax!



Ciao for now,



Jubby xxx

honeybair

Hair has almost fallen out since my first treatment three weeks ago and I am freaked out by the sight of my head, but on the bright side, no more daily shampoos, blow-dries and curling/flat-iron use, not to mention highlights every eight weeks.  Hats and turbans aren't so bad.

Treatment 2 tomorrow morning with totally different drugs from my first treatment.  Don't mind saying, I am afraid.

Hugs to all of you, my sisters in this arduous journey.  May all of you get and stay well. 

SherylB

Hi all,

Wanted to share that when my mouth is tender and burning if I let two tums dissolve it changes the ph and gives me relief

Sheryl

Bryona

Lee, I love what you said about our Colleen being strong. I think we're all ridiculously strong, and I admire all of you!

hope, I imagine your MO will help you to coordinate, or at least recommend you to an RO. I'm doing radiation after chemo (for me it's a no-brainer because I had a lumpectomy and LVI), and my BS was the one who referred me to an RO. What can I say? He likes to take care of things.  At any rate, my docs all agreed on their recommendation for rads for me: 5 weeks whole breast, 1 week boosts. Jules, I've heard other countries do less radiation, too, but I'd forgotten all about that. Thanks for the reminder -- must look into that soon!

honeybair, my hair has been coming out so quickly that my showers are actually taking longer. It's like my head is made of teflon but my body is made of Velcro! It takes me ages to get them all off my arms and chest and back...ugh. And then, just when I think I've got it, I make the mistake of getting my head under the shower again, and BAM! Here we go again! So, there's a mental image to either a) horrify you or b) amuse you when you need a distraction from worrying about tomorrow. Don't worry about tomorrow, sweetie. It'll get here when it gets here, and you'll get through it.

Jubby, do let us know the BRCA results (full disclosure: I'm definitely rooting for negative!), and I hope your onc has some good plans for easing your way through the next tx. Me, I think I'm gonna buy stock in Miralax. Wow.

I saw my PCP today, and she's concerned that I might have a little bit of pneumonia. I don't think so -- my fever finally went down this morning, which seems unlikely if I have pneumonia -- but she wanted me to get a chest x-ray this afternoon. I put it off until tomorrow morning, though. I'll be at the hospital for bloodwork anyway, so I may as well get it all done at once, right? Mostly, though, I put it off because I'm sick of being a patient. I don't want any more appointments, and I don't want any more tests, and I don't want any more drugs. Oh, no! I think my illustrious career as a hypochondriac is over! Now what will I do with my free time?!

Amrdbit

OK Ladies, 

I have a reconstruction question for you. Having always had large boobs to begin with (30D or 32D depending on the bra) I never ever gave implants a thought until now. This is all so totally new to me, as I'm sure to many or most of y'all. LOL! I still have my expanders in and the implants won't go in till after the chemo is finished, but I was jsut wondering about weight. Does weight loss or weight gain affect boobs with implants in terms of size? My weight doesn't change much, I am usually around 108-110..... but for some reason this question just popped into my brain. Anyone know the answer to this? There's not much real inside of them anymore so I am really just curious..... Deb

VirginiaJ

Hope49 -- I will be doing radiation after I complete chemotherapy (cytoxan and taxotere) in May.  My surgeon did not think that I would need radiation because my margins were clear and no lymph nodes were involved.  However, my MO sent me to an RO because my tumor was 4.8 cm and grade 3.  After consulting with the RO, I decided to do radiation.  I will begin taking a hormone blocker after I complete radiation.

Mandy -- So glad that you are doing well after the port placement.  I will be praying that you find the right words to help your little boy.  My heart goes out to all of you with young children.  

Bryona -- It's time to quit screwing around with this cold/pneumonia mess and get better.  

Last Tuesday my WBC was 1.9 and I was put virtually under house arrest by my family.  Today it is 6.9 (woot woot), and I'm out of jail until Valentine's Day when I have my 2nd TX.  

Praying for those who are feeling poorly to feel better, for everyone having TX this week to have few SE's, for those of you with young children to find ways to help them, and for all of us to be blessed with peace and healing.

cancernoway

I will have 6 weeks total of radiation as well after chemo.  5 weeks whole breast, 1 week boost as well as I had the lumpectomy also.  I will have a month off after chemo before starting radiation.  I've already seen my RO, he's in the same practice as my Onc so I've already been through an appointment and the introductions.  They said after the first couple of treatments it will take less than 15 minutes per treatment.  Excited about that part. 

Bryona - Hoping for no pneumonia.  Keep us posted.

Jubby - My Chemo twin, looking forward to your results and sending good vibes your way.

Sheryl - Thanks for the tums tip, will keep that in mind.

I see my Onc on Thursday and have a list of questions for him thanks to suggestions from this thread.  He's gonna love me, lol. 

Good luck to all and I'm hoping all are feeling better soon. 

klaudiak

I will have 6 weeks of radiation after chemo as well. I had a lumpectomy and a micromet in one node.

Skigirl72

Mandy- My son has been acting up a bit a school (he is 10). He is doing things out of character and I know it's because of BC. I emailed the teacher again to remind her of the struggle at home. If you can, get him hooked up with a counselor. He probably is scared and confused that something is going on and he has no idea what it is. All he knows is that you aren't feeling good. I found that explaining things to my son was beneficial. I explained the basics. Mom has breast cancer. Mom isn't going to die. I need surgery. I need to take medicine that will change how I look. Some days I won't feel so good.... those type things.

I also gave him jobs. He has to feed the cats. He is responsible for getting his clothes in the hamper by the washer. Simple things that help you and it makes him feel like he is helping his mommy.

I hope this helps. Our kids are our lives. I had the hardest time talking to him but I did it and he is doing ok. Still scared and sad sometimes but ok.

Anonymous

Mandy that's heart breaking about your son, but you are doing the right thing.Talking to someone early on will help avoid bigger fears later. The "tummy aches" could be his excuse to see the nurse and get attention, or even to try and get home sooner. But, it can also be real and caused by anxiety.

SherylB that's awful you have had such a terrible time with this go 'round (was going to say with #2, but that isn't your current problem as it is for some of us, LOL).

julesDenver I've been wondering about you. Which SE's is the glutamine suppose to help?

hope49 I am suppose to do 5 weeks of rad after chemo. I've had a preliminary meeting with the RO and still need the full-fledged consult, but will go for a second opinion as well. I'm sure I will do it, but still really fighting the idea of it all. I did the double mx so I really felt I shouldn't have to go that route.  So many people have told me the rad is what will really bring on the fatigue, more than chemo, and for what - 5%? That is a tough one to swallow.

julesDenver, ah yes. Call me vain too. But after all this sh!t I really want to have the nice recon done. Don't want rad to mess up my skin for good. I remember how my mom's chest looked after radiation and it was like leather. Although I'm sure they've come a long way now and maybe it won't be that bad. My PS did say though that if it were his wife, and if it the percentage was low, that he would have her do absolustely everything necessary.

Bryona, I second Virginia - enough! You need to get better already. And Colleenkelly too! I sure hope you both get to feeling better soon.

LeeA

I'm not sure if I'll be having radiation or not but for anyone who is having it - Omaz from the Triple Positive thread has an excellent protocol that a few of the ladies have followed it and it has worked very well for them.  I took a screen shot of it a few months back. 

I can probably find it in the archives if anyone is interested. 

Jubby

Ladies,

No BRCA gene.  Woop woop!!  Yay.  

After looking closely at my family tree,  the genetic counsellors have determined that I most likely do carry some genetic mutation that predisposes me to cancer but they just haven’t identified what it is yet.  My oncologist says the same thing.  “In another 10 years, I am sure they will have identified more mutations that explain your situation”.  I am what they call from a HIGH RISK FAMILY - Mum, aunt, and great aunts with BC.  My dad died of soft tissue sarcoma at 55 so I was also tested for Li Fraumeni Syndrome which was also neagative.  YAY! I will be part of a study they are undertaking to look at families like mine with lots of breast cancer but no BRCA mutation.   Hmmm.........

Good news though.  Will be able to keep my ovaries and by the time my daughter is old enough to worry about BC, I pray they will have found a cure. 

Amrdbit, as implants sit under the muscle and are not surrounded by any fat tissue, I don't think weight gain would make any impact on them (other than to make them look smaller if you gain weight around your tummy! LOL).  I carry my weight on my upper abdomen and am paranoid that when I have my Diep Flap reconstrcution later in the year if I gain weight they will look tiny.  My gut hopefully won't stick out further than my boobs!  I have been a D or DD for the past 15 years and have been told they will be smaller after reco as to my amazement the plastic surgeon tells me I don't have a huge amount of tummy fat (WTF?). He has promised to smooth down the upper abdominal stuff with the tummy tuck and I am getting a bit excited about my pending new rack. LOL.  If I gain weight with the diep reconstruction, my understanding is that my boobs will get bigger as they are using fat to construct them.  I guess only time will tell.

Have a great day everyone.

xox 

 

Jubby

PS; Hair falling out rapidly downstairs - started day 12. Hair falling out upstairs - started today (day 13). Cancernoway, how are you faring?  My hairdresser trimmed my wig for me today and I really really like it.  Wore it in public for 20 mins tonight.  Baby steps...........

SherylB

Good morning,

I too will be having rads after a month off once I finish chemo. I met my RO before I met my MO and I wish she was in charge of everything. I don't believe I have ever met a more pleasant, compassionate, loving woman/doctor/person. Her mom and sister both have been treated for BC and are survivors. Her sister even went on to have a baby and then some mets but doing ok. This doctor had never met me or anyone associated with me except my nurse practitioner at my primary docs office and the first thing she did was give me her cell phone in case I ever needed her.

My rads will be for 6 weeks just in case. My margins and nodes were clear but due to being TN it is to catch any stray cells. I am willing to throw the kitchen sink at cancer and hope for the best.

Have a beautiful day filled with blessings and gratitude.

Sheryl

3littleangels

Had treatment #2 Monday and then had to go have  pap on Tuesday morning...just what I wanted to do!  Then had my head shaved because my hair was falling out in clumps, now my 3 year old won't let me lay in bed with her at night because she says my hair is scary, my 6 year old feels the same, so I have promised to wear a hat in the house all the time for them....cried my self to sleep last night after not being able to put my "baby" to bed for the first time in 3 years!  Hopefully one night of crying is enough to get over this...

Mandy - my oldest daughter, just turned 9 today - has generalized anxiety and separation anxiety and was diagnosed 3 years ago - she goes to see a therapist weekly and we put her on a very low dose of Prozac this year to make going to school easier - we have had a lot of school refusal the past two years - and I really thought this BC would put her over the edge - but we were very informative and upfront with her giving her general age appropriate information and reassure her on a daily basis and also allow her to ask any questions she may have and things have been going OK - her therapist and the social worker at the hospital where I am being treated recommended being open and honest to build trust....she hates leaving the house on chemo weeks, but seems to bounce back on the off week in-between my treatments when I go back to work..

Wishing and hoping you all have a great day!

3littleangels

SherlyB - my first treatment of Cytoxan gave me a horrible headache and neck pain for 5 days following treatment - this time around they slowed down the drip by 20  minutes - no neck pain and a very dull headache - might want to try that next round!

Zorina

It was hard to catch up with all of the notes...glad you ladies are keeping things going around here.  You'll forgive me for not remembering who said what, but I saw some questions I thought I could answer.

How much water??   Niagara Falls.  Whenever I go in for Neulasta,  I have a bag of fluids.  The MO says that the Adria is really hard on your ability to retain fluids.  Ask for a bag of fluids when you go in for your Neulasta...you probably won't regret it.

Food - If it sounds good, then eat it.  After round 3,  I am finding I have more food cravings. Last night, I wanted a hamburger and French Fries,  so I made DH take me out to Five Guys.  The taste was muted, but man, it felt so wonderful.  Sometimes the mere thought of a specific food makes me feel sick, but when there is something that I am jonesing for...I eat it.

Fatigue -  I love fatigue because the sleep is so delicious.  I dream, and I don't have cancer or chemo in my dreams. Yes, for couple of days walking from the car to the front door exhausts me, but my energy level improves.  I am not going to have the energy that I once did for awhile, so I've put away my superwoman cape for awhile. 

Post AC#3  Day 6 -  This one was easier in some respects because I had fluids the day after.  Despite the low WBC count on the day of treatment, my WBC count rebounded in a big way after Neulasta.  Unfortunately, this treatment was the first time I ever had nausea, and I could barely keep up with medicating my acid reflux.  However after three days, these SEs disappeared.  My tastebuds aren't as burned as last time...but my energy level is still low.  My MO said that this is mostly due to overall low red blood counts. She said eating more foods rich in iron would not help...my body just wasn't producing cells fast enough because the chemo was kicking them in the butt.  Knowing that chemo is kicking my cells, is a good thing.

Looking forward to/dreading my last AC next week.  It's a milelstone, and while I am not sure what to expect from the Taxol cocktail, I am comforted by the fact that after next week, I will be half-way through with chemo.  Radiation afterwards will surely be easier than chemo...

ziffy321

Had my second TC yesterday at the "studio"...my nickname for my MO's new chemo room.  I swear, it looks like a sports bar (big screen TVs) or a day spa.  Much more pleasant than last time (2002)...it was a tiny cramped room. 

The treatment has been much more tolerable as well--a buggy ride in the country, compared to AC!  But I've also been managing my anti-nausea meds better this time.  So far, no headaches from the Zofran. I am expecting some rough spots in the next few days, but cautiously optimistic that I don't get too wiped out.

Hair loss "upstairs" is about 75%.  After an initial shedding, "downstairs" is not budging any more.  Chin and leg hairs are not falling, but seem to have stopped growing.  Who else has decided to forego the wig thing?  I'm exploring various headcover options on line, but my old LL Bean fleece winter beanie has been my best friend lately. 

hope49

Thanks for all the input on rads...looks like we will have lots more fun things to talk about during the next phase!  I'm glad that I'll have many of you along that journey with me, although I'm sorry we all have to take it.  To me it seems more like an inconvenience step as it's nothing compared to what we're going through with chemo and worth the perhaps small % it can help...I honestly had a harder time selling myself on the chemo and it was a much bigger payoff...first things first, let's get through chemo!

Hope all our 'loungers' today do well!

Skigirl72

ziffy321- I have not worn my wig since I got it. My boss obviously wants me to wear it when I go back to work. I totally understand that. So, other than my work shifts, I plan on going with my buff or a scarf/hat whatever... I told him the minute I clocked out Cousin It was coming off... I am NOT waiting till I get home. I will wait till I make it into the back room of the bar... maybe. He was fine with that. Not like he had much of a choice. lol

I have 12 weeks of Taxol after 2 more AC. Is the Neulasta shot a mandatory thing with weekly Taxol? I am still planning on working. So, I am trying to get a idea what to expect... Any advice observations would be appreciated.

smethot

Is the wig that hideous?  I picked mine out and ordered it last ngiht and it doesn't seem too bad...but i haven't had to wear it yet either.  1st chemo is tomorrow (02-07) and i think i'm gonna chop my bob off next weekend into a Susan Powter cut...it'll only be a little while after that before the egg head emerges.  (and i'd be MUCH happier going commado-head if my head was as well shaped as yours is, Debbie!)

My MO says i get the Neulasta every time- the day after every chemo- 8 in all (x4 AC and x4 Taxol every other week).  Bring on the drugs.  But good news is i found out today that the nurses that come to clean and flush my picc weekly will also come and give me the Neulasta shot so i don't have to do it myself.  Good.  Like this whole scenario isn't macabre enough, i can just picture me having to shoot myself up with weird-ass bone-growth stuff and somehow screwing it up.  Leave it to the RN...safer.  Did i mention i'm a klutz, too?

Zorina

So, I am in the waiting room at the Physical Therapist's office, fighting an overwhelming desire to fall asleep even though there is this woman going on and on about her tendonitis and a bone spur.  I swear she told the same story to the receptionist staff multiple times, complained because it was hard to drive, walk, and how it was affecting her life terribly as she spent 10 minutes traipsing across the room trying to figure out how to adjust her shoe so she could walk.

Needless to say, it was a good thing that I was too tired to say:  Shut the F%#$ up!

Skigirl72

smethot- its a nice wig, I just dont like having things on my head. It feels so uncomfortable. I'm a sweats and hoodie kinda girl so I would rather go out in a hat or scarf than the wig. I miss hair and I want to look presentable at work so I have no problem wearing it. I am all about comfort so I am sure after 8 hrs of wearing it I am going to want it off. It's kinda like heels. I am looking good in them but cant wait to take them off...

hope49

I just emailed my DH to see if he can stop at the supermarket on the way home and pick up a few things for me for dinner...Chili Cheese Fritos, ice cream, Doritos, ground beef and a can of Manwich...and 2 bottles of pure cranberry juice - reminded him to be sure its organic becuase you know I need to make sure I'm not ingesting anything that's bad for me!!! LOL  I have never been pregnant but can only imagine what kind of things I'd be asking him to run out for.  I am just totally craving salty things as it's all I can taste on my already salty tounge.  YIKES!  Better enjoy this while I can before I go back to my near vegan existence in a couple of months