October 2011 Chemo group

stjude10

madpeacock, hope you end up having an ok bday. I know it's not how you want it to be, buy hey, I don't think anything this year is going how we want it to. Let me just say that having your MIL live w/you...well, you must be a saint!

Carla9112

Hi everyone - When I logged on today I was so sad to see that we have four more new members to our club.  It would be great if none of us had to belong to this group but here we are so we'll just make the best of it. 

Marty - How did your doctor's appointment go?  Did you talk to them about the depression?  I'm sure that if I wasn't already on anti-depressants I would be now.  I'm actually wondering if I need to have it increased.  Sometimes the fear just suffocates me.  I just keep telling myself over and over that I'm going to beat it.  Just know you can vent/talk to us any time.  I don't know about you but I love having all of you sisters to talk to.

Surreygirl - it sounds like you have a wonderful supportive husband.  That is great.   What did he put in your work bag?  I'm afraid that I'm forgetting something!   Maybe he can help keep us all organized.

cfdr - I hate that you have to do the chemo but at least you have half of your treatment behind you - yeah!!  With the holidays coming hopefully these next few months will go fast for all of us.  I'm the opposite of you - chemo first then radiation.  I was wondering if you had any SE's from the radiation. 

Madpeacock - I've found the worst part of all of this is the waiting.  It seems like you have to wait for everything - appointments, tests, results, chemo, radiation, etc.  My patience is really being tested!   If I still lived in Alpharetta I would come over and "wait" with you.  I lived there for 18 years.

Auntinance - I'll be getting my buzz cut too about the same time as you.  Wouldn't you know that this coincides with parent's weekend at my daughter's college where I'l have to see the ex-husband?  We get along great now that we're not married but I sure do dread seeing him in my new wig.  If it's windy that day, I'll be worried sick that my wig will blow off.  Guess I'll have to get out the old duct tape!!

Lori - hope you had a good day.  Like you - I'm so sick of talking about cancer.  I'm also so sick of hearing people say "let me know if I can do anything for you".  I know that they mean well but some of the people saying this stuff barely talked to me before.  It's like everybody feels sorry for me now.  I hate it.

Well, gotta run.  You guys are in my prayers.  Hope the rest of your week is fantastic!!

Surreygirl

Welcome Aunt and Mad.  My husband has put a bag together with new sensative chapstick, unscented hand lotion, water flavor packets, a small box of immodium, travel toothpaste and new toothbrush, a couple of small boxes of herbal tea's, a laminated card with all my onc and cancer center phone numbers and travel sizes of Tylenol and Advil.  LOL yep I am out fitted.

martygra

Hi Carla,  I did not talk to the dr, about anti depressents today.  I may later.  I had the port installed today under anesteshia,  I am feeling a bit sore,  took a vicodan and am going to bed shortly,  not much sleep last night and have to be up by 5:00 a.m. tomorrow.  Took the chemo class today, just can't wait to get started, hah right.  At least everyone I know friends and family, lady teaching the chemo class and all say they cannot imagine what I am feeling instead of just telling me to be strong and stay positive,  I say no you cannot imagine these feelings until you are there (and hopefully none of them will have to be) at least they realize that no they do not know how I feel they can only imagine how I feel.   Wishing you all the best, sleep well,  I am hoping I do,  I think I only got 3 hours last night. 

auntienance

Surreygirl -- I thought my DH was awesome.  Yours rocks!

Carla9112

Surreygirl - your husband rocks!  How sweet of him to do the bag for you - and laminated cards - WOW. 

Marty - I'm sorry that you're still not feeling good.  When you need positive thoughts just come to us - we'll keep you cheered up! People mean well with their words but unless they have had cancer they often just don't know what to say.   Hang in there!

Carla9112

Surreygirl - your husband rocks!  How sweet of him to do the bag for you - and laminated cards - WOW. 

Marty - I'm sorry that you're still not feeling good.  When you need positive thoughts just come to us - we'll keep you cheered up! People mean well with their words but unless they have had cancer they often just don't know what to say.   Hang in there!

martygra

Thank you all for you well wishes, hope you are all doing well too.  I am trying to stay positive.  I do know people mean well,  I have been one of them before this,  I did not know what to say when I heard someone say "I have breast cancer"  all I could say is I am so sorry,  and if it was someone close to me I would cry for them,  could not help myself.  I have always been a cry baby anyway which does not help especially now.  I just wish we could fast forward through all of this and get our lives back to normal.  One day this too shall pass I keep telling myself.....  Hugs to all of you!

sue_from_wi

Sign me up, too, for this club that no one wants to be a member of. I start chemo (TCH 4x and then H continuing for a year) on Thursday. Best news this week so far, is that I'll only have 4 treatments and I was expected 6. Worst news is that I pulled a filling out of my tooth while taking a ginger chew (to combat nausea) for a test drive. So I'll be going in on Friday to get that fixed. One more in a long list of appointments.

I'm going to read back through all these posts and try to get to know you all a little. I'm really glad to have a group of virtual friends to stay in touch with through this.

madpeacock

My update - still not sure. Met with onc today and because my results are conflicting, we are retesting. My HER2 is +++, but my Ki67 is very low. Onc wants to do the FISH test on the HER2 to make sure it is positive. First test was off biopsy tissue and this will be off lumpectomy tissue. Also, my father's family is Ashkenazi Eastern European Jew, so I will go for genetic testing this Thursday for BRCA, even tho I am 48, thus over the usual age range. Note - NO history of BC in either side of the family, which onc finds even stranger with all of my other factors. Found lots of info on BRCA for women not yet diagnosed, but nothing on treatment options for BRCA positive/Ashkenazi/HER2+. Guess I'm relying on Google to do too much!  So...next appt with onc is 10/10 and hopefully all test results will be back and we can plan from there. Rad onc appt is Wednesday a.m., but I was told NOT to schedule anything until all test results are back. 

Maya847

Hi all, I go in at 6 am tomorrow for my port and have first treatment Oct 4th.  I am not sure about the abbreviations for the chemicals they are using but I am getting:  "Doxorubicin Hydrochloride & Docetaxel & Cyclophosphamide."  Anyone know what the abbreviation would be for all this so I don't have to spell it all out if I repost?    Doc said I will get an infusion every 21 days for 6 cycles.  I will do what ever it takes to KILL AND DESTROY this! 

stjude10

surrey...lamenated cards...I'm speechless. If I weren't married, I'd ask if he had a brother!

marty, hope things are getting better for you! My thoughts are with you everyday.

sue-welcome to the group nobody wants to join! Good news about less treatments. Sucky news about the dentist!

mad, I think you're right to hold off on scheduling any appts. until after meeting w/onc. I hope all of your results are back.

I'm on to an all day of fun at the hospital tomorrow. I have us on abdomen at 7, check in at 8, surgery at 10, and echo on heart at 4. Yay me! I'm ready to get this surgery over and start to heal. And after 3 weeks w/drain #1, I'm ready to yank that thing out myself!

Surreygirl

Hi Maya and Sue.  I know I am very lucky with my DH, I am glad I got the pick of the litter from his family LOL. \

LORI and MAYA  - good luck tomorrow!  My onc is not going with a port and is going to see how my veins do before he decides on a PIC line or Port

MAD keeping my fingers crossed for good results for you!

Normandy18

I have been reading posts for some time,and finally decided to join. I am starting chemo sometime in Oct. I see my oncologist Oct. 6th and will get my schedule at this visit. I had a lumpectomy and SNB in July, but had to go back to surgery Sept. 15th to remove more lymph nodes due to a positive SNB report--I also had my catheter inserted with this last surgery.

Maya847

Thanks Surrey, did fine with the port, but sore. Was kind of a bizzare feeling when he did it, but have to admit getting the local to the clavicle area was the worse. Very tolerable. Went and tried on wigs today. Very weird experience there too. Seems like I am in a daze. First chemo treatment in six days...nervous but hoping once I get that one of the way and know what to expect I will be fine. 

Normandy, sorry to hear about the SNB report/surgery, but you are doing everything in your power to get rid of it and will do great!

sue_from_wi

Thanks for the welcomes!

My DH is pretty wonderful, too. Maybe we should have a contest

Carla9112

Hi everyone - Welcome to our newest members.  I know that there are a few of us that start chemo on Friday.  I sure do dread it but am trying to keep a positive attitude.  I've told everybody at work I'll be out Friday but back on Monday.  I keep thinking that I'm going to be one of those  people that just breezes through chemo without any SE's. 

I don't know about you gals but I think I'm still in denial about this whole cancer thing.  It just doesn't seem real that I am battling cancer.  You would think that having a DMX would be enough to make me realize that I'm sick but it just hasn't.  I just think I'm going to get over the terrible soreness in my chest soon and be back to normal.  Chemo will probably make it very real and that scares me.

Hugs to all of you!

TAPPY

I am off to see the wizard (Onc doc) on Thursday,   I am anixous to find out more about my path report and the type of treatment.   I will be two weeks out from a double mas.   The waiting has been hard.

 I was told by my surgeon that because it is/was in one node that I will do chemo....I want to be prepared and ask questions, but part of me just wants to hand it over and say tell me what to do and when to be there.  Just fix this so I can be done with it.

sue_from_wi

@Tappy - I'm holding onto the same hand you're holding on to, PTL! My MO used the Adjuvantonline.com site to show me the numbers - explaining why chemo was advised despite negative nodes - namely because it was medium sized and had several markers for being fast growing. I found that really helpful.

@Carla -  You've been through a lot more than me already, but I share, in some ways the unreal sense. I'm planning to be back on work on Monday after my first treatment tomorrow. May we all be among those who breeze through! 

stjude10

welcome normandy, and tappy glad to see you here too!

had my surgery today and boy do I feel better already. fluid reduced in te, dead skin removed, and last drain is out. yay me. finally feeling like I am on my way to recovery! got my us on my abdomen this morning, but ps wouldn't let them echo my heart, so that's rs for next week. unfortunately, port will be another surgery for me.

tappy, good luck tomorrow and may all your questions be answered.

sue_from_wi

Hi, all,

I'd like to hear your thoughts on:

Wig or No Wig? I'm leaning to the No Wig side.

Also has anyone taken the Look Good...Feel Good class offered by the American Cancer Society? Again your thoughts on whether it would be better to take this before hair loss or after.

LuvRVing

Hi ladies!  I am just popping in from the June chemo group.  I had my last treatment yesterday and if you want, you can check out my blog for pictures on chemo and how mine went.

www.mch-breastcancer.blogspot.com

A few words of advice, which I hope will help:

1.  Drink, drink, drink...anything that tastes good to you.  Aim for 96 ounces and start the day before chemo #1, then never stop.  Every day!  It will flush the crap out of your system quickly, it will make you less likely to end up needing IV fluids, and it will make the crappy chemo-mouth go away more quickly.  Don't forget that juicy fruits and veggies contribute to your fluids, so go for your favorites like grapes, melons, etc.  It doesn't have to be water.  Liquids are liquids, generally speaking.  Even that morning coffee helps, although you may find it tasting rather funky for a few days after treatment.

2.  There is a medical solution for every side effect except hair loss and fatigue.  Don't suffer.  To prevent nausea (because I told my MO that I was prone to motion sickness and had daily puking sessions during all my pregnancies), I had premeds that included a scopolamine patch, only 6 mg of Decadron, Emend, IV Aloxi (similar to Zofran) and an hour of IV hydration before any chemo was started.  I had lots of heartburn so I took (and am still taking) generic Prilosec and generic Pepcid.  It made all the difference in the world.  I can handle carbonated beverages in small quantities (so much for my beloved Diet Coke) and spicy foods hurt when I swallow them, so I just avoid them.  My taste buds are not quite right, but they tend to improve about a week after each treatment.  When I started with mouth sores, my MO prescribed generic Valtrex. I've always had outbreaks of cold sores when my body is stressed, and it happened after my first treatment. I've been taking this anti-viral since my second treatment and I never had a problem with any mouth sores afterwards.

3. If you need the Neulasta shot, taking Claritin the day of and for a few days afterwards really, really works for most people.  For some reason, it takes care of the bone pain.  I never had any pain during my AC treatments. I've had a little bit during Taxol (and I have needed Neulasta every time) and I have managed that pain with arthritis-strength acetaminophen for a few days. It starts about day 3 and lasts for about 3 days.

4. Regarding Decadron and the steroid impact, talk to your MO and find out if s/he is willing to try you on a low dose just the day of treatment. I am diabetic and was insistent that we reduce steroids because they have a severely negative impact on blood sugar levels, which then contributes to neuropathy. My MO really listened to my concerns and reduced my dose from the standard 20 mg to 6 mg and it worked just fine for me. Then I didn't have to deal with the steroid SEs - lack of sleep followed by a big crash.

5.  Out of 8 treatments, always on Wednesdays, I was able to go out to dinner on Friday nights each time except one, when DH was sick and I was really tired.  I am 61, so no spring chicken, and while the fatigue level builds after each treatment, I have been able to do far more things than I expected to do. We live lakefront and we had a nice hot summer. I have a big family and they were here almost every weekend. The trick was to tell them that self-sufficiency was key.  So they came, we enjoyed their company, and they did the work.

6.  I wore wigs when I wanted to go out and not get sympathetic looks, or wanted to look as normal as possible.  When I was less concerned about it, like grocery shopping or casual dining, I have worn a ball cap most of the time.  I am finding that the back of my neck gets cold in air conditioning and now that the weather is getting fall-like.  So wigs do their job to keep you warmer.  I bought a really expensive wig, and it is the most comfortable one I own.  But I don't think I would make the same decision, having been through this now.  But fit is critical.  If the cap doesn't fit your head, the wig will never be comfortable.  Someone gave me a really nice one with a style that I love; but I have a small scalp and that wig doesn't stay put and hits the wrong spot under the top of my ears.  So keep that in mind, whatever you decide.  And don't forget to order your free wrap from http://www.goodwishesscarves.org/  They offer a free headwrap to anyone who loses their hair due to a medical problem.  The choices are plentiful and beautiful.  They send you a card personally signed by all the staff.  I promise the arrival of their wrap will make your day!

7.  Do not miss the "Look Good...Feel Better" class. It is wonderful! Free cosmetics from leading high-end companies and instruction on how to apply them. You will learn how to tie scarves or make a headwrap from half a t-shirt. At our class, we were given a list of wig banks where we could get a free wig...not necessarily used, either. Mine was brand new.   I recommend going to the first one that comes available in your area, because they may be held just once a month.  I had hair when I went, but others had lost their hair. It didn't matter, it was extremely helpful. And it can be a way to make new friends in your area. I highly recommend you take the time to go!

You will get through this! The journey will be different for each of you.  SEs will be different for each of you.  If you have any specific questions, PM me or anyone who's been there, done that.

Wishing you all safe passage through the chemo maze, with minimal SEs and lots of support from your family and friends.

Hugs,

Michelle

susanwmcg

St. Jude, Madpeacock, Auntienance, Surreygirl, Martygra, cfdr,Carla9112, cjn5274, Sue_from_wi, Maya847, Normandy and Tappy....

Phew! This is a big group already! And Michelle (LuvRVing), thank you so much for your helpful suggestions. I am making my pre-chemo shopping list now. I had been hanging out on the Sept. Chemo site but have been agonizing over my 19 Onco score and finally made a decision today. I go for port surgery early Monday morning and will start TCx4 later in the week. I am going wig shopping with the girl who has done my hair for 15 years. She is going to buzz me the day I start freaking out.

Thanks for being here for each other. I have spent countless hours on this site and it is really keeping me afloat.

Hugs,

Susan

TAPPY

AC then T starting on the 18th !

Every other week with AC for 4 weeks then every other week with T.

So about 3 months worth !

Carla9112

Michelle - I believe you are an answer to prayer today.  I start chemo tomorrow and have just been sick today with dread.  I have been praying that God will just give me peace about tomorrow.  It's the unknown that makes me crazy.  Your information was just what I needed. 

I can't believe that I went through a double mastectomy and didn't have near the fear or nervousness that I have about starting chemo.  What's up with that? 

Welcome to Susan - like you I can't believe our group has grown so fast.  I wish none of us ever had to access this site but thank God it is here.  What great support and information.

Hugs to everyone!! 

Carla9112

Okay - here's a funny joke to make you smile.  It's a Maxine that I just received.

What do you get when you combine PMS with GPS?  A crazy bit#$% that can find you!

bourscheid

Hi everyone, just poking my head in here to wish you all the best.  You can do this ladies!  I will be more than happy to answer any questions you have.

Here are some great websites that offer free stuff for cancer patients - thought I would pass it along. Laurie from the franceluxe website that offers a free headwrap or scarf to cancer patients is very interested in getting the word out there so she can do more good for people so please pass the information along,  I loved my headwrap last year...they are beautiful and simple to use.  I also highly recommed chemo angels.  What a fantasstic, uplifting experience!  I still keep in touch with my angel from 3 years ago.

http://www.heavenlyhats.com/ free hat package for cancer patients

http://www.thelydiaproject.org/common/feedback.asp?PAGE=384 Free tote for cancer patients

http://www.franceluxe.com/mm5/merchant.mvc?Screen=PROD&Store_Code=FL&Produc t_Code=L3083&Category_Code= Just e-mail Laurie@franceluxe.com.

Chemo Angels: http://www.chemoangels.net/ More for support. Weekly letters and gifts.

There's also: www.cleaningforareason.org

I hope some of you can use these.

Best wishes and thinking of you all (espceially you, Carla!)

Gentle Hugs and Blessings from a 3 year sister!
Lori

stjude10

Michelle and Lori, thanks so much for all of the helpful info.!

Susan, sorry you're going thru this, but welcome to our group.

Tappy, we will be chemo sisters. I too start on the 18th. I will also have 4XAC and 4T every other week.

Carla, thanks for the laugh.

martygra

Hi,  Sounds like Tappy and Stjude10 and I are on the same program except my first treatment is tomorrow.  I DO NOT WANT TO DO THIS!  That is all I keep thinking.  I am so worried about the whole thing,  not reallly worried that it is not going to work just worried about all the side effects and worried that it may damage my otherwise heathy body with all this crap we have to take.  I will also have to have rads and aromatase inhibitor for 5 years, dont' know what yet.  I have not had surgery yet,  my dr. hopes chemo will shrink the tumor so will be able to conserve more of the breast, what about you ladies?  I am also going to have to try and work through it all.  I am divorced and single so what are you suppose to do when you have to pay the bills.  I am just praying that I will be able to function and my body and brain will work enough to get myself to work and do my job.  My job is not physical just mental, kind of stressful at times.  Production environment,  gotta meet deadlines and all that jazz.  I am a planner in a production plant which seems to have gotten quite busy lately even with the economy.  I will try and let you know how things go for me after my treatment.  I have been obsessed with all this lately and am hoping I will back off from dwelling on it so much.  My poor dogs and everything else is suffering as all I seem to do is read posts lately.  Some give me hope others not so much.  Hope all will go well for all us us,  still in disbelief at this point.  I will go and do what they tell me to do and hope for the best,  just can't wait to put this whole mess behind me.

Carla9112

Thanks Lauri for all of the websites - gonna go look at them right now.  For my chemo sisters here - Lauri is from my home town and teaches at the same school as my sister.  She has been a great resource for me and my family.

Marty (and everyone here) - we are going to get through this and when we are finished we are going to know that we can face anything this old world has to offer.  We are each going to be as strong as an ox (but much prettier!).  Don't get down - press forward and keep those chins up and smiles plastered (that tricks the brain into thinking everything is cool and you're happy or at least that's my theory).  You know what's funny - I was crying less than 15 minutes ago!!   I'm fine now - just had to shed some tears to relieve a little steam.   

I will let you guys know how my first chemo goes tomorrow.  I'm fully expecting that it's not going to be that bad.  I went to Michelle's blog and it really helped me to see how well she did with it.  Plus Lauri did really well with her's too. 

I really think after this first treatment we're all going to feel much better just because we'll know what to expect next time.  This first one is just scary.

 Hope you guys have a good night!  Hugs to all!

Take care and talk to you tomorrow!