Starting Chemo in March 2014

Mitzro

Nina, you are a crack up!  "Don't waste your daylight!"  Sounds like something my sweet mom would have said when I was young and I would have wanted to punch something too.  Nowadays I am always spouting off these little ditties from my past and my kids look at me and wonder what the hell I am talking about.  (But secretly I think they like it, and will probably use them on their kids too )

So, I am glad that everyone is doing OK.  I know that morning sickness feeling did stick with me a few days after infusion #1.  I am almost feeling back to normal and #2 is just on the horizon (next Tuesday).  So I am not going to "waste my daylight."  I too have a bunch of laundry to fold, but it's a beautiful day outside here in California so I am going to go out and enjoy it while I can.  Who knows....maybe the laundry will be magically folded when I return???  Fat chance of that!

Macintx

Diem, just regular Claritin, not Claritin D, is what you should take for the bone pain!  The D has a decongestant in it, which is not necessary.  Plus, 12 and 24 hr decongestants aren't good especially for people with high blood pressure, and can affect your sleep.  Just thought everyone should know!

CaliKiwi

Lovemyboysandlabs - So glad the lymph node checked out ok. I understand your panic. I have a node that is up under my arm (the opposite side to where my tumor was).  I'm sure it's nothing but you are absolutely right. At this point everything feels SO scary.  Glad you went though, since the WBC was low!

Nina - thanks for being a great cheerleader. I now have a wig on order and you have inspired me to name it. Still musing on that one!

Diem and Sarah, congrats for getting that infusion done yesterday. Fingers crossed the following days go well for you.  Sarah - I was thinking the other day that chemo feels like morning sickness and the worst hangover I've ever had, combined! 

Mitzro - good on you, ditch the laundry and enjoy the fresh air.

I totally wish I was losing weight. I'm eating less than ever but I'm retaining so much water it's crazy.  Now, I've not been anywhere near small for a long long time... but now I have moon face to go with it

On a good note I feel so much better than yesterday it's crazy. I actually did make it in to my work function. It was kind of nice. I was named employee of the month for my division of the county I work for, so I went to a Board meeting and the CEO presented me with a certificate. I was actually awarded it in January but due to surgery asked if I could collect it in March.  A bunch of my colleagues made the effort to come and see me which was great. I was exhausted when I got there. And when one work friend hugged me I burst into tears, but I recovered quickly enough.

Sadly there are now photos of me out there with my hair looking like a hideous fluffy mess, because I just couldn't manage to make it do anything else at 6am and decided that I just didn't care enough and simply making it there was going to have to do!

Now I'm back home, hyrdrating and trying to recover.

Laura - I'm about to friend you on Facebook, looking for a request from Kelly.

megomendy

Nurselaura, check your "other" group on fb, I sent you a friend request to join the group.

NadiaT

So I am delaying chemo a week now so we can squeeze in one more fertility cycle.the oncs thought it was fine. I have to say I was on the fence since im stage 3 ER/pr+ but my husband really wants to have kids so I thought I should keep our options open. We already have 4 embryos on ice, but my sister took 5 failed embryos before she got her first children, so we wanted to be cautious. But I am terrified to have children and pass my cancer history in to them, even though I don't have the brca genes. I do have an unknown mutation to the p53 gene though. A specific mutation in p53 causes almost a 100% cancer rate in those that have it (could be a variety of childhood cancers, lung, colon, breast, prostate, etc). They've never seen the mutation I have so they can't say for sure if it has any effect on cancer rates, but I sure wouldn't want to give that one to my kids. So I'm on the fence about kids now even though we really wanted to be parents. We were trying to start our family literally right before I found the lump. But my husband said he wasn't ready to give up the idea of children so like I said, we're doing another fertility cycle to keep our options open. Pardon my french, but fuck you cancer for messing up our life plan! Grrrrrr. 

Anyway, moral of the story is I am delaying chemo until 3/25 now..but I'm looking at wigs this week and next, and cutting my hair off next week and donating it to wigs for kids because they actually give the wigs away completely for free. 

We should start a non-profit that makes wigs out of our own hair quickly and for little to no cost so we can just use our own and not have to pay an arm and a leg for someone else's or fake hair! Anyone, anyone??

Maggiemay1220

Kiwi lady, don't feel like a failure!  I had my treatment on Friday and did great Saturday.  Sunday and Monday I felt terribly naueaous.  Today I tried work and only made it 1/2 day.  It is so frustrating!  Hang in there!

They gave me Zofran and Compazine and I don't feel it did a lot.  What do you all take?

My first port access went well for those that are nervous. (Like I was). They did ice because it was so new but they said they won't do it every time as it is not good got the skin.  

Good luck Wednesday girls!  The chemo process was not bad.  I woke up with an amazing calm the day of and it went well. 

Jmenchaca78

So I'm 4 days out from my first treatment of TC. The weekend was fine, hardly had any side effects. Yesterday and today I've just been very tired and achey but nausea hasn't been too bad. It really does seem like flu-like symptoms. I did wake this morning with a lot of pain in the back of my neck but took some Aleve and it helped. I feel like a teenager though because my face and chest are so broken out! My mouth is really dry and my food tastes funny but I still have an appetite which is good. Overall things haven't been too bad, I was expecting worse by far. I just wonder if the second treatment will be different or should I expect the same? I'm using this time as a basis for the next treatment since I'll need to work after that one.

Lovemyboysandlabs

So this shot was given to me at 2 and I feel flu-ish right now, like just very fatigued and bleh. Did anyone else experience that?

Nurselaura

HaHa Nina, my Grandma use to say "never let the grass grow under your feet" I miss that lady.

NinaW

Arrrgh! I want to read all of these new posts, but I feel like I'm on roller-skates tonight and my kid is still doing his homework, so I have to post and run AGAIN. Please assume love and good thoughts and hellos all around. I wish I could build a time machine and toss you all in there, then take you to the future, where all cancers are cured with delicious chocolate. Also, my time machine would never be a DeLorean. Eeew. It's a super-stretch limo or nothing for the March ladies.

I'm not sciencey enough to build a time machine, but I'll definitely share my latest brainstorm, which will be the cover story in the first issue of my upcoming magazine - "The Frugal Cancer Patient". I give you...LOW-RENT ICING GLOVES!!

Recipe:

1 pair rubber dishwashing gloves (large or extra-large if possible)

1 sheet individual-cube cooler ice pack

Pair of scissors

Carefully cut out individual cubes from the cooler ice sheet. Put one cube in each of the fingers of the glove (the gloves are stretchy, so just wiggle the cube in there until it reaches the tip of the finger). Repeat with second glove. When finished, toss gloves in the freezer overnight.

Voila! Icing gloves for less than $10 total. No drippy mess, ice stays directly on your nails, and you can hold your book/iPad/Kindle/etc. without feeling like a sad little mittened lobster. You can place any extra cubes from the ice pack sheet into the palms of the glove if you like, and just put a loose rubber band around your wrist to make sure they don't slide out.

My genius is generally wasted on far more frivolous matters. Frankly, it's a relief to put it to good use for a change, lol. I face the chemo chair tomorrow at 8 AM with my posse NurseLaura and 1Among3.  Be back later xoxo

CaliKiwi

Brilliant, Nina. You certainly are a creative genius.

I finally heard back from insurance about my wig.  The good news is that they will cover one.  However, my deductibles have to be met or come out of that first. This is fine for In-network as I'm over my out of pocket max, but out-of-network not so fine.  They'll then cover 80% if I buy in network and 50% (after deductible) if I buy out of network.

So! I could get a nice wig for 20% of the price if I buy in network. What's confusing me is finding something 'in network'.  When I asked Insurance they said - if it's in network they'll submit everything for you, that's how you will know.  When I asked the wig shop I went to today - I don't submit to insurance, but I give you the paperwork so you can get reimbursed. Sigh.

Since I ordered a wig for $250 today I'm thinking I might just stick with that and save the insurance wrangle.

1among3

Nina, not only are you amazing but you are also a genius! Thanks for the awesome idea about the icing gloves! I'll have to remember that when I start the Taxol in a couple of months!

To you and NurseLaura - Let's rock this tomorrow! I'll be thinking about the both of you as I go in at 9:00!

To everyone else - thanks for the tips and support! Hugs to all!!!

1among3

Kiwilady, sorry to hear about your insurance woes regarding your wig! My insurance will cover up to $350 regardless of where I get it. I don't think I have an in-network vs. out-of-network for wigs...

lalala

Hello fellow March ladies. Just quickly checking in towards the end of my Day 2 of Chemo, Cyle 1.  YIKES, AM I EVER TIRED.  Only slept 4 hours last night (day 1) most l ikely due to steroids in the one antinausea pill (Decadron).  Worked remotely from home PC to office PC for an hour early am; picked up my granddaughter and drove her to school - only b/c we're close and I really love it - then went to home care nursing unit to have my picc line dressing changed and resterilized, then went to work in office until almost 6.  Haven't hurled yet (fingers & toes crossed) and I am slurping minestrone soup right now and then will taken Decadron & Zofran for my nighttime antinausea's.  Mouth is starting to feel a bit try and I am slosing biotene in there several times a day but will also try the baking soda rinse as well. I get my first neulasta shot on Friday so will pick up some claritan before then (thank you all for that bit of advice).  Love,  hugs , encouragement, cheers, compassion, faith, and hope to all of you.  Let's all wish for a great day tomorrow for all of us.

Nurselaura

yay Nina, and 1among 3, tomorrow is our day. I will also think of you ladies. I do not go in until 1:30 pacific time so I guess I will take it easy and eat lightly. Get a good night sleep everyone!

Nurselaura

I better brush up on my pre chemo info they gave me that I have not looked at yet LoL

jmg58

lala....I am supposed to be able to change my own dressing and do whatever else needs to be done to the PICC line....can you let me know how difficult it will seem from what they did to you?  Does it seem like something I can reasonably do myself on top of giving myself my own shot?  I'm so impressed that you went into work! 

Good luck to everyone tomorrow!  My antinausea meds are Zofran and something called prochlorperazine?  Anyone else take that one?  Tomorrow I take my first steroid...it says just one a day one day before and two days after chemo....with a meal.  Did anyone take it at breakfast and have it work okay or is that too early do you think?  (Nurselaura, I am currently reading up on my stuff right now, too!)

Mitzro

Hi NadiaT.....you are one brave lady.  Your story makes my heart hurt....but I know you will prevail.  Good luck with the fertility situation.  I will be sending healthy, loving and positive energy your way.

JMG58....I took Zofran and Ativan after my first round of chemo and it worked great, but beware of constipation.  They will warn you and tell you to drink lots of water.  I did both, but after a couple of days I was miserable.  I took Senecot S and then started on the Miralax.  I would do both of these as often as they allow.  Just my situation, but I am going to be more diligent on Round 2.  Good luck to all of you who are going in tomorrow!  Sweet dreams....

Xrayalli

Good luck to you all starting chemo today. I hope it is not scary, goes smoothly and that you feel good all day and for the days to come. I am starting tomorrow , I still don't know what my regimen is! Can you believe that?! My doc was waiting for a call back, I guess whoever he was consulting with was on vacation, Geesh, surprise regimen for me.

Going to work today, feel better than I did yesterday, not as swollen. Have a great day, Marchers!

Maggiemay1220

Nurselaura, I just sent a friend request.  I am Maggiemay on here but Jan Krupinski on FB.  I am glad you started this page.  I just "came out of the closet" on Facebook with this whole cancer mess.  I wanted my classmates, friends to know that it's not just our parents generation.  

maryland

Hi everybody, haven't been here for awhile, trying to get my life in order before starting the dreaded chemo on Friday. My insurance company has agreed to let me give myself the Neulasta, so I went to the pharmacy to pick it up yesterday. I have already met my $5000 deductible so I no longer have to pay for my meds. I got 2 pre-filled Neulasta syringes… know what they costs?? After the discount?? … $10,800. That's right, and I'll have 4 to go after this. That $900/month with $5000/deductible ain't looking so bad now. 

So, I'm really interested in the ice glove idea Nina, does it seem to be working? I'll be getting Taxol and Cytoxan, and I'm worried about the neuropathy since I do hair for a living. Also, do you all think the Claritan helps, my doctor didn't tell me about it. That's the one thing I don't have in my "chemo box"

mom2Bnegativex3

Kiwilady, CONGRATS!! On feeling better and the award!!! Yay on the wig but not all the hurdles! Can't wait to see pics!

Nadia, good luck on the fertility treatments. Just an FYI My husband and tried 2 years berfore I was diagnosed in 2009. 4 years out from first DX I found out I was pregnant. They told be due to chemo and my age I wouldn't get pregnant again, SURPRISE, I am now 6 months pregnant getting ready to start treatment. For the last 4 years my husband and I never used any protection. Just didn't think I could get pregnant. Well here I sit as uncomfortable as could be:) We will be naming this baby FAITH!! I wish you the best(()) I start 3/24!

Nina. you are so clever:)

When I had Taxol DD biweekly x4 the only time I got neuropathy was in one finger and just at the tip only lasted about 5 mins at a time.Maybe once a week.. Also I didn't have any nail problems. Just like with the other SE you may have them or you may not. I am worried about with the Carbo I will have diarherra and get dehydraded and that will bring on preterm labor. BUT then I was going to take Colace 2 days before treatment so I won't get constipated because I learned my lesson the first time!!

Welcome to all the new ladies! And good luck and hugs to the ones who start treatment to day. I will be thinking about you all day(())

Good luck at work today, Alli!!

Have a great day everyone! I think we all deserve a laundry fairy for the next several months:)

Mitzro

Mom2BnegativeX3 you ARE a warrior!  6 months pregnant and facing chemo.  I salute you.  I am glad to hear your neuropathy was not that bad.  My Oncologist says after my 4 AC treatments, she is suggesting 12 Taxol treatments (once a week) or 6 treatments (every other week).  Obviously the second dose would be harsher.  What would you do?  A friend that is an Oncology nurse says to go with the 12 treatments.  Would love to know your thoughts.

Nina, I am amazed at your icing glove creation.  I will be using that cool device when I am ready to take on Taxol.

Good luck to all of you who are going in today.  You'll do GREAT I am sure.

Macintx

Mitzro, my MO will have me do DD Taxol 4 times every 2 weeks.  But, he said that if I have a hard time with the first round, we can always change to the weekly for the remaining.  I just want it to be done sooner, so I'm hoping my DD isn't too bad.

mom2Bnegativex3

thank you, Mitzro! Sometimes I feel "alone" because I can't  have the other meds that would fight this to its fullest nor the testing to see if it is anywhere else. Ket alone this is my second go around:( To begin with I would want what would be the strongest. I know dd, which is bi weekly would be harsher of the two BUT if you can get through AC biweekly, (assuming it is dd) you can get through Taxol. Like I said above I would ask MO which would give you better results then add the benifits to your lifestyle. Like do you really want a infusion every week. I am getting my treatments every 3rd week. I have read that you get slightly better results with weekly infusions. But that is just what I read. I will ask my MO  on Friday when I go in:) thank you again (())

CaliKiwi

Good luck to today's chemo ladies!  I'll be thinking of you.

cancerisnotmyhappyplace

Good luck to everyone on their chemo. I love the gloves!  

Nurselaura

Hi Jan I just added you to the Facebook Page. Sorry I am on Pacific time and slept in this morning. I do not want to take credit for starting the page I believe it was Dawn. It is good to have another outlet for us Ladies if that is what we want. I also find it awkward writing on this blog compared to face book, but I also believe this is a wonderful support and educational outlet.  As to "coming out" I am all for promoting awareness and education regarding this prevalent disease. I do not think it should have a stigma attached to it because that will only hurt our cause. I do understand that some may be more private and that is OK too.  What ever works I say!

Nurselaura

img58, I believe you can change your PICC dressing at home but it may be a bit awkward to do it yourself. Make sure they teach you how to properly clean it as you can get a very bad infection in your blood if it gets infected. We normally change ours in the hospital every week or as needed. The drug prochlorperazine is an anti-psychotic which means it helps with anxiety and nausea. It does have some odd side effects at times. I recommend  everyone look up their drugs on-line. Just Google it to get an idea what you are taking. Don't be afraid though because every drug will list every side effect possible, but that does not mean you will experience it. 

jmg58

Thanks, Laura.  When I went to the Mayo they wanted to put in a port they said because of the difficulty of taking care of the PICC myself, but the doctor here said no when I asked her about it.  I have no idea who in the world will be able to help me change the dressing; there's really no one...especially no one who will be at the "learning part" with me, so I guess I'll have to pay extra close attention to explain it to someone.  I hope I will be able to do it okay and keep it clean.  Maybe they will let me come in once in a while to do it for me; that would be nice.  I will reread the side effects of that drug, too, when I get back to the hotel today.  I will make sure my boyfriend has a copy of everything so he will know if I'm going off.....