January 2013 chemo group

teacherjulief

Your pictures are great. You are a beautiful lady, and your wig looks very good on you. I am very self-conscious with my wig, too. The first day I wore it to my school (on Tuesday), the entire staff wore pink for me. It was very kind of them and I was very touched, but I did feel like I was wearing a sign that said " yes, I have cancer and this is a wig!" I am getting over it, though

Marianne52

Jubby,

You still look beautiful. You can't tell at all that is a Wig. I didn't like mine at first but did get use to it after awhile. The very few people I told it was a Wig could not believe it . It looks like my hair just as your Wig does. Soon we will all have our own hair back.

Hugs and good wishes to you. Marianne

Anonymous

Hi Ladies! I've been off the boards for a few days and wow, I have like 5 pages to catch up on. But, as I meander through the pages I wanted to through a question out for you all. Maybe this isn't the forum for this, but be it as it may, I'm highly interested in organizing a local ride that will benefit a breast cancer charity of my choice (still researching that one). If anyone has tips or suggestions on how to organize events as such I'd welcome the input. This is one area of passion for me and of all the events there riding for BC is almost non-existent.  Hope everyone is doing well. 

chgogemini

Jubby



You look gorgeous!!! With or without a wig.



I just shaved my head today and am wearing a wig i don't know how to post on here.



Gina

Lauren15

Hi everyone!  I haven't been on the boards since I was in the hospital at the beginning of February.  I can't even begin to catch up.  To make a long story short, the port is out, picc line is in, no more antibiotics, and after one treatment of TAC, I am now on Abraxane every week AND I PRAY IT WORKS as well as the TAC.  They did a baseline ultrasound before they changed treatments, and just 1x with TAC, the tumor was definitely smaller.  Anyone know anything about Abraxane?  Much milder with less SEs.  I'm hoping to find the time to stay more involved in the boards.   My job is keeping me very busy!!!  HOPE EVERYONE IS WELL!!!!  I can't wait to catch up with everyone.  Lauren

j1e1n1a

Hey ladies....have not posted here before. I was just diagnosed in Dec2012 and started chemo in Jan 2012. I am on TAC every 3 weeks. 3rd infusion will be next Wed. Just wanted to say thanks to all your posts...been lurking for a while. I have random SE‘S (taste, aches in legs,light neuropothy) usually gets better in 3rd week...then they pump me full of poisen again.

Have a good weekend hope everyone is well w/out SE'S.

cancernoway

skimommi - We are doing something similar.  We show classic cars and are organizing a car show for later in the year and are going to donate the money as well.  We have named it Hotrodders for Hooters.  In order to get donations from large stores aka Walmart, Target, local groceries, etc, you have to have a Tax ID number in order to show you are non-profit.  Once you have that you will be able to get most places to donate gift cards, money, actual items, etc that you can raffle off.  Go every place you can think of for donations.  We have started collecting already and we go to gas stations, every restaurant, fast food and sit down you come across.  We called some t-shirt printers and told them what we were doing and got 100 shirts donated and if we want more, we can get them printed for 1/2 price.  We are also getting the rubber bracelets with our car show name on it and we are going to get a goodie bag together for all of our participants.  We called a local printer and they are going to print up sticky pads with the pink ribbon and the car show name on them.  We are getting our trophies donated as well.  You just have to be brave enough to ask and I think right now since the bald girl is coming in and asking for help, they know that I'm doing it for the right reasons.  I'm not shy anyhow and I tell them my story and that I want to help others.  We are also going to have a basket raffle and are asking some of the local shops to donate a basket that people can buy tickets for.  We are going to every place we can think of including Auto Stores, Hair Salons, local craft stores.  We are hitting the flea market and asking the booths to put something together and if they don't want to put a basket together, 9 times out of 10 they will make a donation that we can give away as a door prize.  Every car that registers gets a door prize ticket and we draw numbers off and on all day.  We have talked with a DJ and he is going to donate his time so we don't have to pay anything out to him.  We have organized several car shows in the past so we have a bit of experience with it.  When you are doing something for a charity though, the best bet is too not have any money come out of your own pocket.  Alot of people will be more than happy to donate knowing that you are doing it for a good cause.  You can normally find a band that will play for free if you just ask them.  I would make a full day of it and probably set up a poker run of sorts and include several bars in it that would benefit from it as well and ask them to donate to your cause.  Have a decent entry fee, a fee for a singer rider and a different fee for a couple which might include a t-shirt and then have more shirts for sale.  You might even end up at a place that would let you have a "dance" that you could charge for that you could donate as well.  We had a show a couple years ago at a restaurant/bar and they donated a percentage of their sales for the day.  We are donating to the American Cancer Society.  I realize that the money will go to all cancers, but the largest percentage goes to Breast Cancer research and since some of our peeps have other cancers as well, I would rather it go there.  Plus, they use 100% of donations for research.  Komen keeps 45% for administration fees.  We will have a team in the Breast Cancer walk so we will be donating there then anyhow.  I hope this helps and if you have any other questions, drop me a line.  I will help you out anyway I can.  If I don't know the answer, there is a girl that works with me on the shows and she will know it or between the two of us, we can get it.

cancernoway

j1e1n1a - Welcome, we are glad you are here.  My SE's usually get better about 12 days after infusion and then as you said, back to the bar and we start over again. 

LeeA

j1e1n1a - Welcome!  

cancernoway - I love your energy and your dedication!

lauren - welcome back - great news regarding the tumor definitely being smaller after one treatment of TAC.  A friend of mine had a 10 cm tumor back in 2006.  By the end of chemotherapy (neoadjuvant) all that was left was scar tissue.  The breast surgeon just went in and cleared that out but the tumor was completely gone!  

jubby - what a great progression!  It reminds me of lago's hair progression (she took photos every month or so and it's very inspiring).  AND YOU ARE BEAUTIFUL!  Long hair, short hair, buzz, wig!  Now I can put a face (in my mind) to the person bobbing around in the sea water in that antipodal part of the world!

Anonymous

j1e1n1a I am on TAC every 3 weeks as well. Just had my third last week.

cancernoway thanks for the insight. You obviously know what you are doing. So even in places like gas stations do you just ask the cashier's, or do you ask for the manager/owner? I really like the ACS too. That is one of my tops. And too right, that right now would be the best time to ask for donations. Being bald really has to drive home to them that you are doing this absolutely with the best intentions.

LeeA

I have a lot of respect for Dr. Susan Love and her foundation.  Why?  

Copied/Pasted from the front page of the site: 

Our groundbreaking research is focused on finding the cause of breast cancer and stopping it before it starts. With your help, we can save countless lives and spare millions of women from ever getting breast cancer. Act with Love today and help make breast cancer history.

http://dslrf.org/actwithlove/

Anonymous

Thanks Lee, I hadn't heard of that one.

SherylB

Skimommi,

I think you just got your answer from cancernoway. WOW, cancernoway can I say how impressed I am. You just wrote the how to manual for getting things done for charity.

Skimommi, you can just print her posting and you will be on your way. These boards never fail to impress me.

Hugs, Sheryl

ywheels22

Hi all

thanks for all your words of encouragment!  I had round 2 (AC) on Wednesday. The nausea was a bit worse but the anti-nausea meds took care of it. I had the dreaded Nuealasta shot on Thursday and took my first pain med at 4 then again at 9. I didn't sleep great but this time around was better. I took a pain med again in the morniing and then in the afternoon. I also did the Claritin. Not sure what the difference was but it was better, thank God! NOt as much aches and pains. I hope #3 and #4 are the same or maybe better!!! Could I be so lucky?!

My head is shaved and it's okay. Not sure how much I will wear the wig. I think I might lean towards bandanas and hats.

2 more AC rounds to go, then on to Taxol, dose dense, 4x. I hope it is easier then AC!

Good luck everyone!

Oliverhog

Nicole, my MO is also a molecular biologist and prof at the University of Chicago.  My AST and ALT have been creeping up since the taxotere treatments started.  I think I read that if those numbers get to 1.5 greater than the upper limits of normal, the risk of death associated with taxotere goes up.  So, I’m going to heed her warnings on the single amino acids.  I always print out something from an official study or website when I see the MO to ask about adding something new or different to my regimen to minimize side effects. 

Zorina, since my Neulasta was cut down from 6 mg to 3 mg, I haven’t had fevers or symptoms of feeling sick like you feel when your white counts are elevated.  So, thankfully that’s been working.  We’ll see how it goes this treatment.  Just had the shot yesterday.

Jubby, my tests were O.K.  The lung functions came back no worse than before and some functions were a little better.  Blood tests came back with nearly normal counts, but AST and ALT liver enzymes are creeping up, which is apparently a function of taxanes.   I can’t stress enough the single amino acids, like glutamine especially in the face of elevated liver enzymes.  I guess that’s a decision only you can make.  It seems like the risks potentially outweigh the benefits.  The issues we would be concerned about while going through chemo, like stomatitis and mouth sores do benefit from glutamine, but the jury is out on some of the other benefits.   So, I’m not going to take it.  Jubby, love the photos.  You’re such a doll.  What’s amazing is that I think we all sort of look very similar to each other bald or close to bald.  It makes our eyes bigger.  Love the pixie cut and love the wig.  Love you bald.

Lauren, so glad the port line/pic line issue is resolved and that the tumor shrunk for you.  Good luck with the abraxane.

Bryona, so glad you're back home!

SherylB

ywheels22,

I have been having really bad neck, back, head pain despite the claritin and lots of tylenol and ibuprofen. They slowed my cytoxan from 30 minutes to 1 hour on Thursday and the pain is much better, less pain. I received the advise here from numerous people who felt better after they slowed the drip down. Ask for them to adjust your time, next time. I don't know about the other 2 chemo agents.

Hang tough, Sheryl

Skigirl72

I've have a NEW SE to add to my list. I had a massive headache day 5 and then the same this morning (day 7). BAD. It was like a hangover headache. I keep thinking I'm doing something wrong. I am staying hydrated, usual amounts of caffiene, etc... I'm not drinking alcohol so its not beer related. AGH! I used to grind my teeth when I sleep and it would wake up my DH. I asked him and he said no teeth grinding. I managed to dull it with 400mg advil and a big cup of coffee... WTF.

Skimommi- There is a small organization near me that does a fundraiser once a year. Its called Laura's Gifts.

http://www.laurasgifts.org/Home_Page_2.html

The husband started it after his wife passed away from BC. They help a few families every year around Christmas with gifts for the kids and for the BC survivor (I was one of those families. it was very humbling). I'm sure he cound give you some suggestions too. It does look like Cancernoway had the fundraiser thing nailed down! I would add to call major corporations too. I used to help run disc golf tournaments for my ex and we would get sample sizes of sunscreen, granola bars, stuff like that for free. All ya have to do is ask for it. You would be surprised how easy it is to fill the goodie bags. All they want is their logo on a tshirt or flier. easy...

Love the Dr. Susan Love foundation... It pisses me off that The Susan Komen uses 45% of the donations for advertising!!! jerks. Research and testing is going to save lives, NOT excessive advertising to make us aware! Dammit, WE COULDN'T BE MORE AWARE! It's a pink washout in October! yeah, we got it, breast cancer kills people.... lets use that $$ to find out how to treat and stop it from doing that.

Jubby- You are absolutly beautiful... love the progression photos.

Anonymous

Jubby - you look beautiful with or without hair. Truly.



Lauren - I am so sorry to hear all you've been through! Here's to abraxane continuing to shrink that tumor with minimal side effects



Sherylb - thanks for the note on slowing down the cytoxin. Number three is doing a number on me with aches and pains. It's worth a shot for the next round.



Oliverhog - thanks for the heads up on the glutamine. I'm going to request the chem panel results to make sure I'm not doing more damage than good!



Bryona - welcome home and I think I speak for all of us when I say we've missed you!



I'm going to share another "find" just in case anyone else is fighting dry skin. My skin has taken a beating from this chemo. I picked up some cetaphil moisturizing cream for my body and cetaphil restoraderm for my face/head and no more flakes!

LeeA

For those of us on Herceptin - I ask them to slow the Herceptin to an hour.  When I go to Herceptin only I plan on asking to have it slowed to an hour and a half. 

NicNak

Hi ladies!! I started my first round of chemo Jan 8th. I did fine the first two rounds, but this third one really kicked my butt. I was in bed for 4 days... horrible nausea despite the meds and a few fainting spells.  I am a single mommie of two little guys (5 and 8), so that was a tough few days. Hoping it gets better and I can get back to work tomorrow. I am a little scared about the fourth round now. Has anyone else had a similar experience? I was told that it would get worse as the rounds continued, but I wasnt ready for this last one, especially since the first two were really mild.

I am really excited to get to know people on here. I have a great support system, but it isnt the same as talking with others who know what I am dealing with.

Also, I have not had surgery yet. That is supposed to be scheduled after the last round of AC. I am a little nervous about the recovery time for the double mastectomy with reconstruction. Does anyone had advise on that?

LeeA

NikNak, I'm sorry to hear you had a rough bout with round three.  I don't recall what regimen you're on but I've read about several people having a harder time with that number three.

Re: double mastectomy - I had mine first (pre-chemo).  

I think a lot of it depends on the type of reconstruction you're having done.  I opted for implants so I have tissue expanders in place until some point in the future (post-chemo and possibly post radiation - not sure if I have to have radiation yet or not). 

The most important thing to remember, especially for a mother with young children, is no lifting/reaching.  You will most probably have drains and doing a lot of lifting/reaching increases the chances of disrupting the drain system.  I had drains in for six weeks and I'm 54 years old and no longer have small children at home.  I've read about some who have gotten their drains out as early as one week.  The drain provides a route for infection so it's very important to follow your doctors' instructions carefully - especially while those are in place (despite being very careful I developed an infection but in retrospect, my plastic surgeon thinks it was my body rejecting the Alloderm he used beneath the right tissue expander). 

Do you know the month of your surgery?  Typically there is a thread started for every month of surgery, kind of like the chemo threads.  Additionally, you can look through the archives and get a lot of great tips for pre-post surgery from others who have already gone through the experience.  

I hope your next infusion is a smooth one!  

LeeA

One other thing - for the first month or so post-surgery I slept in a reclining chair in the bedroom.  That chair truly was a lifesaver post-surgery because I'm a side sleeper and it kept me from rolling to either side.  Thanks to pain meds I was typically able to get a pretty good night's sleep.  Additionally, sleeping in the reclining chair kept the upper part of my body elevated just slightly which might help with fluid build-up.  

I've read mentions from others who have used a recliner chair the first few weeks post-op as well.  

Anonymous

NicNac~I know we're all different, but I want to tell you that even though AC 3 cleaned my clock....weakness, faint feeling, shortness of breath, I'm happy to report that my only SE with AC 4 were the Dead Skunk Tastebuds!



I hope your final AC is as easy as mine was.



I can't imagine going through this with 2 small children. I hope you have friends & family to help out.



Blessings

Paula

Marianne52

If you are doing A/C, #3 was awful. #4 was much easier. I had a radical left mastectomy. Had my drains in for seven weeks as they continued to drain a large amount after surgery. I will not be having reconstruction until 10/13. With IBC you have to wait one year. 

cancernoway

Skimommi - I always talk to a Manager/Owner.  We also send out a form letter/flyer to large organizations as was suggested (forgot to mention that) and follow up with a phone call.  They will send all kinds of stuff for goodie bags.  You will be surprised.  We send them out to all of the car part dealers, but we also send them to Proctor and Gamble, General Electric and places like that. Being that it is a Bike Run, I would send them out to all of the bike manufacturers and contact your local bike shops as well.  Get ahold of some of the manufacturers of the do-rags and see if they will send you anything.  We contact Jegs (car part dealer) and every year they send us a minimum of 100 ball hats and a bunch of bags to use for our goodie bags.  We also get ahold of Hagerty Insurance and they will give bags and ink pens and sticky pads.  Banks will do the same.  When we started doing shows, we did them for Autism (my friend's son has Autism).  We contacted the Austism Society and they came out and set up a booth and had packets they handed out and also some stuff for sale.  We were donating our money to them so we didn't care what they sold.  Take a walk through your local mall and write down the names of all the stores, find their corporate office addresses online and send them your information.  The sooner you start the more you will have and the bigger your event will be.  You may even consider having a bike show along with your ride.  Get a trophy shop to donate some trophies and give out the top 10 or 15 or whatever they will donate.  Have the participants vote then you don't have to worry about judging.  What we do is if we have 100 trophies, then each participant gets to pick 25 cars.  That way it is fair.  So if you have 15 trophies, have each person pick 5.  The bikes with the most win and the bike with the most picks gets Best of Show.  Kind of gives them more for their money and keeps them around.  And we also do a 50/50 split the pot. 

Nicole503

NicNak ~ I also had an easier time with AC #4 than I did with #3, but I think that is in large part because I got really really serious about resting.  Easier said than done with a 5 & 8 year old but super necessary.  I hope that you have abundant support, and that your support includes sometimes taking the kids out for fun (theirs) and rest (yours).   You are almost done!

Anonymous

There was just a story on the news about a 9-year old girl diagnosed with leukemia. Her classmates and teacher shaved their heads today to support her during treatment. That is just awesome. Although it just breaks your heart for her to be so young. She will be facing 2 and a half years of treatment.

Anonymous

Cancernoway I am highly impressed at the amount of information you provided.

I had a thought occur to me in the middle of the night. What if I hold the event in October and call it "Don't Drink the Pink". Can't use "for the cure"c so I can't get sued for DDTP . . . or can I? LOL  Only problem is that I think big corps will be turned away because SGK is such a force to be reckoned with.

Anonymous

Lee, I had wished I had a recliner post-op. You should have been me in my queen size bed with a dozen pillows tucked all around me.

Skigirl that sucks about the headaches. I wonder what that is all about!?! Maybe the meds. Several of the popular rx's list headaches as a side effect. Geez, really? Like you need another!

LeeA

Skimommi - Don't Drink the Pink is a GREAT tagline/slogan!