November 2014 Starting Chemo Crew

knittingPT

liwi, I'm so glad to hear that the Neulasta wasn't bad.  How far are you walking each day now?  I want to start jogging again.  I stopped when I got my diagnosis in September because with the pain after my breast and lymph node biopsies, I couldn't wriggle in/out of my sports bra.  Ironically (and thankfully) it was an especially difficult upper body workout that led me to have very sore pecs and to find my lovely tumor!!    As a physical therapist, I am definitely PRO exercise and ANTI bedrest (as a professional . . . we'll see what I say if I get fatigue/side effects!)   When I got my port, the surgeon was laughing because I asked for the port to be as close to the middle of my body as possible so I could still wear my backpack for day hikes.  She said that usually people want it hidden.  I told her I just want to be as comfortable as possible and to keep my options open to participate in my normal outdoor activities.  This treatment better not ruin my ski season!! (Yes, I know.  I may not be able to do everything that I did before but I'm not ready to lay down and be sick for months on end!!!) 

Kiwi, I might have to visit you and get my ski season during the nasty Tucson summer next year :-)  

Is anyone else trying to keep up an exercise program (or want to start one?).   Or, have a favorite hobby of another kind?  I would love to hear about things other than cancer!  I know.  It's the chemo board but we are all people outside of our cancer and our chemo too!  Let's not forget the other parts of ourselves during this ordeal we are facing. 

Leslie I hope your hiccups let up.  My mom always had me suck on a spoonful of peanut butter to make them go away.  Maybe that will help?  

nyfloridagirl

Hi, I'm joining you girls on this crazy journey. Thank you so much for starting this thread. This is my first post. I was diagnosed in late August.

Starting chemo this Wednesday the 5th. Very anxious, nervous and scared but also thankful from all the tips posted from others on what to expect.

My treatment is TCH, 6 rounds chemo, then Herceptin for the rest of the year. This journey is not easy but I'm glad we have each other for support

Tigger2

Hello peeps! Thanks for setting up this discussion. I like the idea of being apart of a crew! Not much to add at this moment... the basics would be I just moved to the area and started doing hot yoga with my husband (to improve our health!!) Within a week I felt an uncomfortable lump on my right side. Got myself in for a mammogram and then the process started... you know the drill. I am unable to have an MRI because I broke my tib/fib and I have metal in my leg that is not compatible with the machine so we are estimating the tumor at 2cm and there are calcification's in a separate area that have been biopsied as well.

I feel very fortunate in the sense I was able to get right into a breast clinic at Mass Gen where I have 5 doctors pouring ove.r my results every Thursday in a consortium and making recommendations. Since I will be doing neoadjuvant treatment starting TODAY my appointments last Friday were to poke me every way you can! After 5 hours I was exhausted but pathology has everything they need to test. The hormone target drugs are supposed to be amazing. My onco was really positive when I tested hormone/HERS2 positive and said she new just what she wanted to use to attack. That made me feel great. Still waiting on genetics to see about the BRCA. 

Turns out that I have a guardian angel working overtime. As I mentioned, I have just moved to the area - in September. I have the best team of doctors... which all started with a yelp search to find a great imaging center near me!

So here I am. Wide awake and waiting for my first treatment at 10:30. I'm not anxious anymore (thank God!) that ended when I got my bone scan back - all clear yahoo!!

I will have the Neulasta shot tomorrow and plan to exercise (thanks for the tip.) BTW do you know how much that costs?! My specialty pharmacy called to get payment of $40 for it and I asked why it was not covered. The woman said it was the co pay with a giggle... the non insurance cost is well over 4k!!!

enlm20Erica

Hey Tigger... Welcome to the crew!  Although Ihate the fact that we are here its good to have someone to talk to who understands. Congrats on the bone scan that's wonderful news!  i also an appointment today, but with a gyneOncologist.  I had genetic testing done that came back positive for BRCA2 so now I have to have the conversation about having my ovaries removed as a preventive surgery.  So the journey goes on.  I hope your treatment goes well today with minimal to no side effects.  My prayers are with you! 

knittingPT

Tigger2 my oncologist's office signed me up for the Neulasta First Step program that helps pay for the drug.  (I think my copay is $25 dollars or something like that).  I have good insurance but they told me if there is a program to help and you can get it, take it.  Okay, I won't argue with that.

Redhead01

Greetings fellow travelers on this detour of our lives.  Thank you for starting a thread that we'll all be basically on a similar time-line together.  I'm getting a port on Monday, 11/10...then start chemo on the 13th.  Taxotere & Cytoxan, once every three weeks, 4 times.  FOUR!!  I am so relieved....  it will still be a course of 3 months, but am so thankful.   Living in PA, I hibernate over the winter time anyway, dark early nights will be easier to take if I'm ready for bed at 6PM !!  Cheers ladies, God bless each of you. Ginny

Leslienva

Does anyone know when the side effects such as mouth sores, fatigue, and hair loss start happening? I know not everyone gets all the SEs but just wondered when to expect them...

I feel okay today, just tired from having to get up at 3 am to take more Tagamet for the heartburn. At least the hiccups went away.

Astarte

Hi everyone, thanks for the warm welcome! I had testing all day yesterday. The first was chemo education and I got to ask all the questions I wanted. So I asked everything I could think of, from my wariness/concern over the decadron to the ativan for anxiety. I asked if I could have the ativan now, they said no problem. We also went over the different anti-nausea meds and which ones to take when. She also leveled with me that I will likely feel crappy a few days after each AC treatment and I might want to work from home a few days after that each time. I have the job flexibility (thankfully) to do so. 

The scans weren't bad. The MRI freaked me out a little because I'm slightly claustrophobic and I felt really trapped. I did my best (and succeeded in) not having a panic attack which launches me into an asthma attack. I foolishly worry that they forgot me in there.

The core biopsy was not fun and I guess it never will be. There were the two advocates from the study in the room. They talked to me to try to calm me down. They all knew I had a bad experience last time. I asked for double the numbing medication. So they get out the tool and the doctor says "This here is a little needle..." I interrupt "No it ISN'T!!! It's huge and I've seen it!" So that didn't work. Long story short, the doctor handling the malicious device in question was working it a way that made me wonder if he'd done the procedure before. I don't mince my words, so I point blank asked if he had. They assured me he has. So they do the numbing medicine and check to see if it's ok to proceed. They do. They made sure I was ok before moving to do another, I was. I did unfortunately feel the third one of four. It still wasn't as bad as the first time, but I felt every bit of it, including the needle being removed. Makes my skin crawl typing it. Fourth one they promised not to hit that area again, and they did not. They used an ultrasound to guide the procedure. They taped me up really well and sent me on my way. 

Today was a CT scan that was super simple and made me feel like I had to pee my pants. Then I just had a bone scan which was cool because I got to watch. I should have results tomorrow. If it comes back with no cancer anywhere else, then I should get into the study. There is a low chance I would get randomized to standard care. 

I have to catch up on some work since I was out two days, but I promise to give you all the individualized support you've been giving me! Thank you for it! And like a pp said, let's kick cancer's ass! I like that! And thanks to all of you BTDT ladies, your sagely advice is very helpful!

WinningSoFar

Dear Leslie--from my experience, expect your hair to be gone about 14 days after first infusion.  I never got mouth sores, so don't know about that.  Fatigue just set in gradually.  It was probably during my third cycle that I really started to notice it.  I hope that helps. 

Nik1966

Well that wasn't so bad :-)  Home from my first infusion and at my desk working just in case I am too tired tomorrow.  I have had litres and litres of water both during and afterwards and I feel ok right now, but my bladder is getting a real workout.  Tigger, once I found out that my CT and Bone Scan were clear I was a lot less anxious about chemo.

Anyway, good luck to everyone who is starting in the next few days.

karen1971

HI LADIES, i just went today and found that i have to have chemo, so next wednesday i go and find out what kind of chemo i will be having and then hopefully after that i will be starting my treatments.

kerker65

nyfloridagirl

Hi! I too, am starting my first chemo treatment tomorrow. I'm so nervous, worried, scared. I will be thinking of you, my treatment is set to start around 2:00. 

Good luck to you, hugs and prayers 

Karen 1971

Good luck to you tomorrow, let us know what treatment you are on and when you start. I know it's all mind numbing right now and probably will remain that way but we are all here together and we can all "KICK CANCERS BUTT" 

kerker65

knittingpt

I am having chemo every 3 weeks for 12 weeks, then I start radiation 5 days per week for 6 weeks. What is your schedule like? When do you start?

Thanks girls, It is nice to know I'm not alone, however sad that is

thatcameragirl

Hi!  This is my first time posting. I have triple negative and just got my port placed today.  It's sore but not too bad.  I start chemo the 11th.  I'm pretty nervous about the side effects but am thankful for all of you to help calm my nerves!   I'll be doing 16 weeks of dose dense chemo.  I can't remember the names now but think it's adriamycin, cytoxan, and taxol.  How do you get your diagnosis, etc to show up in your signature?

mmb70

Hello! So thankful for this forum! :-) I will be having my port placed on Mon, 11/10 and start chemo on Wed, 11\12. I will be getting Adriamycin/Cytoxan  every 2 wks x4 followed by Taxol/Herceptin weekly x12, then Herceptin every 3 wks for 1 yr total. I will also receive the Neulasta.  I went shopping today based on all of the wonderful recommendations from those who have started this journey before us! I am so ready to get this started! The only thing I am still wondering about is icing hands/feet during infusions? Any suggestions/input would be greatly appreciated! 

I have also set up an appointment to have my head shaved :-/

Prayers & best of luck to all of you fellow warriors! We will do this together!!!

~mmb70

Moderators

Welcome to all the new members here! mmb70, thatcameragirl, kerker65, Karen1971, Astarte, knittingPT, Tigger2, nyfloridagirl, Redhead01--we're so glad to see you on the boards. This is a wonderful community full of support and great information, and we hope you find yourselves surrounded by women on the same journey as yourselves. 

The Mods

knittingPT

kiwi, I'm glad today went well!!  

thatcameragirl, I think we may be on the same chemo protocol?  I'm doing A/C together every other week for 4 cycles (with neulasta shot the following day) and then 12 weekly taxol treatments.  mmb70, sounds like you may be doing similar?  I start on Thursday and will keep you both posted.

to add your diagnoses, go to "my profile" at the very top of the page, then diagnosis tab.  You can add all your stuff and make it public. Then it just shows up in your posts without you having to do anything.  It's nice to see what people have done already.  I'm starting with chemo but others start with surgery.  

leslienva, did your heartburn ever go away?  I sure hope so.  That is noooo fun. 

amylsp

I had wicked bone pain in my hips last night for a few hours while trying to fall asleep (prob the Nulasta shot I had on Saturday finally kicking in). Otherwise, I've been gradually feeling better each day. I had my first chemo on Thursday (10/30), and probably the worst days were Saturday afternoon through Sunday night. My heartburn was bad and I felt completely exhausted.

KnittingPT, as far as work is concerned, I'm a Massage Therapist, and I saw two clients on Friday and then did not work for three days. I saw two clients again on Tuesday and did ok energy wise. I'm hopeful I will be able to continue to work through Chemo, as I need the money!

knittingPT

Amy, thanks for your info!  I'm doing chemo on Thursday afternoons and will work Friday.  Then I'll be off Saturday, Sunday, and Monday.  I'm hoping that is enough days to get me through the worst!  If not, I will adjust the schedule again.  I hope you have some massage therapist friends who can give YOU a massage during this ordeal!

LauraW68

Update:

Bone scan and the CT scan were clear! Nothing
anywhere else unless there's a cell or more floating around looking for a
place to land and start a tumor. Doctors still want to do chemo since
that may be the case being one of the lymph nodes involved showed it
had broke through the wall. I had 3 of 15 lymph nodes test positive for
cancer.

Saw the medical oncologist on Monday, November 3rd. I'll
have an echo on the 20th then and a port placement on the 21st. Then my
first chemo treatment will be December 1st. I'll have 4 treatments (1
every 2 weeks) of AC (doxorubicin and cyclophosphamide) and then 12
weeks of Paclitaxel aka Taxol. 

I will have to take the Nuelasta shot as well.

The talk of Radiation was thrown in there but not sure how many rounds.

Then take the hormone blocking pill for 10 years he said.

So I'll actually be joining in the December Chemo group.  I am not looking forward to being bald in winter. lol

Nik1966

Laura, your dx sounds like mine.  Maybe it's the way with ILC - we grow big suckers, and they are often Grade 2, gentle giants.  I had 9/12 lymph nodes involved (some microscopic involvement).  I don't really know any more than that as I shut down at that point. 

 I was so so scared about the results of my CT and Bone Scan, convinced that every cough and ache was caused by cancer spread.  They were clear, I found out last week. Those results changed my whole attitude to chemo. I had my first cycle yesterday - then every 21 days for 6 cycles, then they give me a month off to recover.  I will have 5 weeks of radiation, then hormone treatment.  After which I will have my right breast removed as well.  They don't offer that routinely in New Zealand, but will do it after treatment has finished.

Good luck with your treatment.  We're going into summer here, so I am worried about having to wear either a wig or a hat out in the heat.  You can get away with it in winter ;-)

Astarte

knittingPT, You are 100% right, we are more than cancer
alone, we are people. I do Olympic weightlifting for exercise
(if I can ever get there that is!) I’ve had so many appointments and so many
biopsies (four in two weeks) that I haven’t been able exercise for a few weeks
now. But I may go tomorrow, even though I’m sore from Monday’s biopsy. I miss it. I am worried that my port is right
in the path of where the barbell sits. That could be very problematic if it
does.I actually made a rule in my
house, you might like it, it’s cancer-free Saturday. I told my friends and
family that on Saturdays, I don’t want to discuss cancer unless I bring it up.
Everyone loves the idea. You can’t get away from it, even when you want to. It’s
stressful and all consuming. And it doesn’t have to be.I take time to play with my son (born
7/31/13) and read books and such. I try to have some semblance of normalcy. I also love hockey. I am a biiiiig Boston
Bruins fan! So I watch a lot of hockey on tv as well.

Nyfloridagirl, welcome to you. How was your day, how did chemo
go today?

Tigger2, where in Boston are you (just curious, I lived
there for 35 years) ?

Hi Karen, welcome! Good luck next Wed!

Kerker65, how did today go for you? I hope it wasn’t so bad.

Thatcameragirl, glad to hear your port placement went well!
Good luck next week to you as well.

Amylsp, glad to hear that you are feeling better; I hope
your bone pain is letting up.

LauraW68 one good thing is we can wear nice comfy warm hats!
I have a neat ninja-kitty one I plan to bust out.

Kiwi1966, I know exactly what you mean; I panic all of the
time now that I have cancer everywhere. I am waiting to hear on my scan
yesterday. My bone scan was clear, I have not heard on the other one and I’m
nervous about it.

Hope I didn’t miss anyone, I tried not to!

Leslienva

KnittingPT, my heartburn did go away. I'm trying to eat small meals thoughout the day.

I now have a yucky metallic taste in my mouth so nothing tastes right. I was also really tired today. I'm going to keep a log of my side effects and see if they're the same for each treatment. I'm also going to ask my oncologist about the nausea. Maybe she can prescribe something that works better than whatever was in my pre-chemo meds. 

Hope everyone is doing well!

Leslie

kerker65

Astarte 

My treatment went fairly well, thank you!

Heartburn, extremely tired, dizzy, nausea, took meds, going to bed, not looking forward to the Neulasta but hey, This too shall pass, my favorite saying ! Good luck and good night to all 

Denisenim

I'm with you Erica. Had my first treatment last week, same chemo as you. Today I am experiencing terrible head sores that may be folliculitis from what I've read. I have about 20 of them on my head. Going to call the oncologist tomorrow. Good luck to you!

Liwi

I go tomorrow for my 2nd treatment in my plan which is 4 dense dose A/C infusions followed by 12 weekly a Taxol.   Then surgery, probably radiation but I am trying to focus on one thing at a time.  I've been walking every day now up to 2 miles.   Any recommendations for other exercises for someone who hadn't been doing much prior would be appreciated.  

A friend brought me a cookbook called One Bite At a Time that has recipes targeted for people going through treatment.  Just started reading it and it has some real good looking recipes along with nutrition information.  

I got my hair but real short today as I expect it will start falling out soon since it will be 14 days since my first infusion.   Couldn't quite bring myself to shave it.  But I've assembled a collection of hats and head covers.  I already have a lot of scarves as I've been using scarves more for my neck over the past couple of years.

enlm20Erica

Denise, thanks for joining! And congrats for getting your first treatment over and done. I'm so sorry about the head sores, that's the first I've heard of this side effect hopefully your dr will have a solution to help get rid of them. Please let me know what he says. I have my first treatment on the 17th, I'm looking forward to it but I'm not looking forward to it, I just know once I do it I'm one step closer to being Done! Have you expedience any other SEs or just the head sores? 

Bippy625

hi ladies, I am in the August chemo group and just wanted to say hi, and encourage you all!  It will not be easy at times. But, I thought many times I would never finish and here it is, my last tx on Nov. 21!!!  You have excellent tips posted here by those that have been through it, and keep those handy. The most surprising thing to me was the differences in SE from chemo to chemo. Be ready for anything is my tip, because it can differ each time.  The worst SE for me was the Big D and the nausea. And you all will have degrees of some, and none of other SE. 

Another tip, is do not eat anything you love during your infusion or at the facility. The thought of anything I ate the first time before I knew better still makes me ill today. I always wear comfy clothing and all of it goes into the washer immediately. The shoes never enter the house. I touch nothing at facility and hand wash like crazy!  You need to prevent any infections you can. Wash those hands, always.

Do not let dehyradtion from nausea and the Big D get ahead of you, or you will end up needing a transfusion of liquids and zofran and/or being placed in hospital.  Call the doc before it is serious, they can fix it. 

if you have someone that can come to chemo with you as a watchdog/advocate, do so. Do not accept insensitive, or unhygienic standards from any medical staff. Never be afraid to ask questions.  Let the advocate be the heavy!  My DH has asked numerous times before allowing someone near me, did you wash your hands? He will not allow any harm to come to me and you may need that on your off days. He will not let one nice, but particularly clumsy nurse near me!

Also, abstaining from alcohol really helped me....now at the end, my liver enzymes are elevated so any less poison into it is a good idea.  I so wanted to eat well and fresh raw food, but....ended up only being able to endure frozen entrees, the BRAT diet (a must if you get the Big D), and muffins, cereal, crackers. It is okay so long as you eat and after chemo is the time to eat raw foods and diet.

exercise as you are able to. I began a walking program after dx!  Before dx I was a very sedentary person and never walked. It has really helped me most of all. but, do not force it either. Listen to your body....rest whenever you need to, eat what you can, and avoid negative energy in all forms.

Lastly, if your career is unrewarding or stressful, or if you hate it, consider quitting if at all financially doable. I did, and can say due to chemo, no way could I work. It was the best decision, and not all mine entirely as I was basically tossed away once my showdog standards of performance dropped! Well....no matter, that job was killing me in the very literal sense. I do not miss it at all. When I do go back to work, I am only going to do what I want to!

Best wishes my sisters, you can do this and are strong!

thatcameragirl

I think I got my signature figured out.  Just wanted to test it and also ask if any of you are near Clearwater FL as that's where I am.  I am getting my BRCA test results today and am very nervous.  Just don't want to do any more surgeries if I don't have to.  I'll let you all know what I find out.  I'm so happy to have found this group!

enlm20Erica

Thatcameragirl, I was also tested for BRCA and was positive for BRCA2 I know how nerve wrecking that can be. So because of that I decided to have a BMX (bilateral mastectomy) now I have to prepare for a oompherectomy/hysterectomy. Good thing is I'm 32 I had my first pregnancy last year (boy/girl twins) so if I can't have kids again I already have one of each..and it will be a laparoscopic procedure thats almost painless and has very short recovery time. (Just trying to look at the bright side because if I don't the sadness will come and stay!) In going thru reconstruction now and will be done with the expanders early next year around Feb. At that time I will have surgery to get my permanent implants and have the laparoscopic surgery done at one time. I'm hoping everything is clear and there is no BRCA gene present when you get your results. Wishing you the best today!