Starting Chemo April 2009

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  • annadou
    annadou Member Posts: 221
    edited April 2009

     Hi Nico

    Whats that about ice gloves and socks?do you buy or make ?please enlighten me !

    Anna 

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  • Nico1012
    Nico1012 Member Posts: 1,492
    edited April 2009

    florbo ~ Ice gloves are available online through medical supply stores and are VERY pricey. Several of the ladies at the chemo clinic wore thin white gloves and held frozen bottles of water during the infusions. They also rested their feet on frozen gel packs, the kind that come in some ice coolers. B complex and L-glutamine are excellent for protecting muscles and nerves also alpha lipoic acid caplets. The suggestions by Nadine for Ocean nasal spray and moisturizing eye drops as well as bombus suggestion for root beer are both great. Barq's root beer is supposed to have a natural anti-nausea herb in it. In the wig department, I got a mid lenth curly wig by Raquel Welch online for $100 and even my husband was fooled! Everyone thought I had my own hair made in to a wig.

    I check in on all of you every few days and you are all doing splendidly!  Keep up the good work, YOU CAN DO THIS!

    Nico

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  • sherrimo
    sherrimo Member Posts: 18
    edited April 2009

    Hi ladies, haven't dropped in for a while.  sherrilynne, from a fellow sherri (sherri lou) the wait is worse than the treatment.  I go for my 2nd AC next Wednesday and my only se were on the 2nd and 3rd day.  Tired and a little nauseous but nothing that a good nap and drugs couldn't take care of.  I haven't had any bone or joint pain from the Neulasta...yet.  A positive attitude makes all the difference!  I have had some "chemo" brain.  Lose things, can't remember things, wait I guess I had that before I was even diagnosed!  The other day I lost my wig head that I was going to give to my hairdresser.  I wandered around for 2 days mumbling how I had lost my head.  My daughter said it was the strangest conversation we had ever had.  I did find my head but am still looking for my brain.  The weather in Wisconsin has turned beautiful, in the 70's yesterday and today.  I even went for a bike ride yesterday.  So, Sherri, keep a sense of humor, and look forward to a great cancer-free future!  SherriMo

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  • Nadine54
    Nadine54 Member Posts: 230
    edited April 2009

    Dropping in to say another great nights sleep but with help of meds...Who cares I am on a roll with this sleep and loving the mood I feel now...counting down to April 22nd.  Hope everyone is hanging in there!  We can do this..and we WILL get past this and be cancer free...yippee!  Say that again...Oh hell yes, YIPPEE.

    Will keep reading the post and will check in closer to the 22nd.

    Nadine

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  • BetsyBuzz
    BetsyBuzz Member Posts: 592
    edited April 2009

    I had my first TX of AC on Tuesday April 14th. It went pretty well. I was more concerned with them accessing my port a cath than the TX. My shoulder and neck were still sore from the surgery. But thankfully it turned out to be nothing, way easier than them digging for a vein. Today day 4,  I seem to have a little more nausea and I'm a tad bit more tired than I thought I'd be. Maybe it was because day 3 wasn't as bad as I anticipated and I ended up taking a short walk and chatted with my neighbors. In Oregon, you go out side when the weather lifts even for a couple of hours.

    It's suppose to be a beautiful weekend I'm looking forward to enjoying my garden.

    Betsy 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    Well, ladies, I just did it, and you all are right - boy does it feel so much better than the pressure and sensitive scalp I was having!  Plus, no handfuls of hair falling out.  Funny, now I look exactly like my 25 year old daughter, who wears her hair like this all the time!  It was so strange looking in the mirror and seeing her, but with makeup on!  My DH shaved his head in solidarity with me, even though I told him he didn't have to - I like his beautiful blonde hair, but he did it when I went in to wash my face.  I came back out and his hair was gone! 

    Hope everyone has a peaceful, SE-free evening!

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  • txgal
    txgal Member Posts: 58
    edited April 2009

    What a week and I'm glad it's over. Started out perfectly fine on Monday with labs and onc appointment.  Tuesday was the subclavian CVC install (got to get with the lingo!), an x-ray, then home to wait for the first available chemo slot which was inconveniently at 7pm.  Had some tagamet followed by "something to relax me"...which meant calm down the high-strung kid in room 31.  Had the F followed by the C.  Chomped on ice chips the whole time and a couple of crackers.  Then I was sent home with this pump for the A for the slow 48 hour infusion.  I was told it was about the size of a cell phone in a fanny pack.  What they forgot to say was that it was the largest fanny pack you've ever seen and the cell phone size was something from 1991!  Not a great thing to have to lug around for two days.  Sleeping was a challenge.  Can't sleep on the right side because of the expander and lymphedema, can't sleep on the left because of the CVC, so that leaves my back and I hate sleeping on my back!  On Wednesday I felt a little tired in the morning but managed to go out and meet a friend for lunch.  On the drive there I was thinking it wasn't such a good idea, but when I got there and had some soup and bread (I love Panera Bread Co.), I felt a lot better.  I've been religious about taking the nausea meds every 8 hours and haven't really had a problem.  I'm eating small portions more frequently and that seems to work.  On Thursday we had to go back to attend a class on how to take care of the CVC and change the dressing.  Last night we had to go back so they could remove pump and then I got another hit of F while chewing on ice chips again.  I woke up this morning still feeling ok and actually hungry.  We had to go back yet again today to take the second class and then demonstrate to the IV nurse we could flush the line, change the cap and change the dressing.

    My husband has just summed up the week.  He's laying on the couch, TV on in the background, and turns to me and says...I don't know about you, but I'm knackered...and then falls asleep.  The poor guy has been driving me to and from appointments all week and I think I've finally worn him out.

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  • HelenNC
    HelenNC Member Posts: 84
    edited April 2009

    Hi all! I am joining this group as well. I have my port put in on 4-24 & first Chemo on 4-28. I've had my lumpectomy with 16 nodes taken out.

    I want to thank everyone on this board for all the tips. I already have an appt with the ACS for my free wig. & I applied for the free turbans. With the sharing from this board, I feel like I am prepared.

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  • BetsyBuzz
    BetsyBuzz Member Posts: 592
    edited April 2009

    Just want to add one thing tonight which I think helped me that I read on another post. The first day of treatment, I switched from silverware to plastic utensils. It made a huge difference with the metallic taste I had with every bite. Small meals, lots of H20, and plastic is what I'm embracing through this process.. I'll keep you posted if it continues to work. SFSG 

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  • inthemoment
    inthemoment Member Posts: 538
    edited April 2009

    Hi Kathy,

    How did today go?  Did the nausea subside?  Hopefully you are in a sound sleep as I type and won't be seeing this till the AM when you are rested.

    Your appointment at the wig shop is tomorrow, right?

    Welcome Helen, you are in the company of a great group of women who are all helping each other get through this.  My brother lives in Greensboro and also has a house near New Bern - are you near either?

    Bombus - hope the rest of your day went ok.

    Chelev - congrats for taking control over your hair loss - I will be doing the same.

    Txgal - I'm exhausted just reading what your week has been like.  I am a nurse (and actually did iv therapy and patient teaching on CV care some years ago - who knew Cry), so I know how much there is to learn!  Most important is good technique for dressing changes and cap changes - sounds like you have it down!

    Well, I am going to retire for the evening (just thought I'd throw some classy sounding terms in here).  Wishing you all a peaceful night.

    Geri

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  • tulipbebe
    tulipbebe Member Posts: 85
    edited April 2009

    Hi All, I'm into Day 5 of my first dose.  Today is a lot better than yesterday.  Yesterday I was totally out with naps, constant nausea and a growling tummy but messed up taste buds.  Today is smooth so far.  Will administer the Neulasta tonight.  A little scared though.

    Btw, any of you have pain in the other breast?  I have shooting pains for a couple days and when I finally went to my surgeon, she gave me an ultrasound.  Results are still pending but from what I could read during the scan, there are 2 beanies....one on each side of the breast!  I am freaked out still about what that could mean. 

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  • ikat
    ikat Member Posts: 128
    edited April 2009

    HI Geri,

    Yes I was sound asleep...  I actually got 16 hours sleep..I never sleep that long. I came home from work at 2:30 went right to bed. My DH made me dinner at 6:30 then right back to bed. Sleep is the best cure all.  Yes my hair apt is today at 1... Today is going to be a beautiful day any plans?

    Chelev that was very sweet of your DH. I bet the two of you are really rocking the new style. 

    Bombus how did it go for you the last few days?

    Have a great day all, remember it is what we make of it.

    kathy 

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  • inthemoment
    inthemoment Member Posts: 538
    edited April 2009

    Hi Kathy,

    Great that you were able to sleep!  Is the nausea better?  I told William at the wig shop that I was referring you - let me know how it goes.

    It is indeed a beautiful day - I plan on getting myself out of the house by 11am, might take a ride to Fort Lee to visit my daughter (I love to go down there - we usually end up in Hoboken at one of the restaurants on the water.  Here's hoping everyone has a good day.

    Geri

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  • ikat
    ikat Member Posts: 128
    edited April 2009

    Hi Geri,

    Just finished a PM to you.  Smile

    kathy 

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  • HelenNC
    HelenNC Member Posts: 84
    edited April 2009

    Inthemoment:

    I live in Sunset Beach, near the border for Myrtle beach.

    Thanks for the welcome. I am overdosing on reading all the posts & educating myself. I have applied to the ACS for a free wig & go on Tuesday for that. I have applied for the free turbans from heavenly hats too. Also, Susan Komen is looking at my application to see if I qualify for a free wig too.

    I'm going shopping today! Have to buy tops & blouses that can be used for the chemo. Some of the products that were posted in the chemo thread too. I DO love to shop!

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  • inthemoment
    inthemoment Member Posts: 538
    edited April 2009

    Hi Helen,

    Wherever you are - beach is in the name and I love beach, sand, water, waves....ok, you just convinced me,when I finish the A/C and before I start the "T", I am going to my brothers house in NC on the beach for some r&r - don't need much of an excuse, but b/c is certainly enough of one!

    I am going to get the web site for you (and anyone else who is interested) for a free silk scarf (which, by the way, is beautiful)...no income check, no nothing - just a company whose CEO wanted to do something nice for us chemo ladies.  When you get the package from them, let me know if it brings a tear to your eye as it did to mine!  I'll log on later with the info.

    Kathy - I PM'd ya back!

    Geri

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    Shopping is good!  I just ordered more bandanas, in a variety of colors - I'm finding them easier to do than scarves - I'm not with tying things and they just ended up looking like big bandanas, anyway!

    Retail therapy . . . it's the best kind!

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  • TractorGirl
    TractorGirl Member Posts: 2
    edited April 2009

    I start chemo 4/24 I have been asked to join a trial AC vs T.  I would be given either AC or Taxel.  I would not know which until I complete the paperwork.  As anyone else heard of this trial?  I did not see anyone else you have just received Taxel only.

    I purchased a wig and pick it up next week.  I was told it would need to be trimmed for my face.  As anyone else had to trim their wig. 

    Thanks :)

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  • txgal
    txgal Member Posts: 58
    edited April 2009
    TractorGirl...yes, definitely have the wig trimmed.  I took mine to my usual stylist and let her do her magic on it and it was so much better when she was done.  Did a great job on the bangs and even did a little bit more layering to make it look more like what my hair used to look like.  Actually, my hair will never look as good as this wig... Laughing
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    Yes, I also had my wigs trimmed by the stylist at the American Cancer Society.  I needed to retrim the bangs on one of them and may take it to a stylist (my regular stylist just moved, which is fine, I won't need one for a while!) to shape it a little more.  With some shaping, they really can look like your old hair, or better (I could never get my flatironed as nice as the wigs!!).

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  • jlp
    jlp Member Posts: 54
    edited April 2009

    I buzzed off all my remaining hair this morning - it was coming out in handfuls and starting to look really weird. I now have the GI Jane look and everyone says it looks good on me! Who knew....

    I got a wig but I think it will be just too hot and uncomfortable to wear - maybe it will feel better when all the hair is totally gone and my scalp is not sore any more. I went to dinner with some friends tonight and one of them lent me her collection of scarves - some of them are exquisite hand painted silk, etc. and I think that will be my 'work' style from now on, and wear my golf hats for 'casual'.  I also got 2 'it's a wrap' headscarves (1 free, 1 I bought) from the web site mentioned by inthemoment - they are great, really easy even if you have no tying skills! I have tied the 'tails' on mine to the right size and can just pull them on and off like a hat.

    Been eating everything in sight since early this week - I think my body is making up for the 7 days I could hardly eat anything.  The good news is that my tastebuds are pretty much back to normal and I enjoyed a couple of glasses of wine tonight!

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  • NanaA
    NanaA Member Posts: 293
    edited April 2009

    Tractorgirl - This is NanaA from the March chemo group.  I had my first of 12 weekly taxol on March 24.  I have now completed 4.  So far it has been completely doable.  A few bumps along the way were the steroids made me diabetic on days I have to take them.  I have had to give myself a few shots.  Usually only on Tuesdays which is chemo day.  It also gave me acne again like I was 14.  The worst day of the week for me is Saturday which is day 5 if you count chemo day as day 1.  Tired, and  some leg and abdominal pain.  I am having a little neuropathy in a couple of toes.  Nothing too bad so far.  I have herceptin with every 3rd taxol  and will continue to do the herceptin for a year since I am Her2+ also.  My Dr. would not consider the A part of any chemo if you are doing the herceptin.  They do not mix well because both are hard on the heart.  The herceptin required an echocardiogram before I started.  Any damage from the herceptin reverses as soon as you stop it.  Your echocardiogram score has to be over 50 to do it.  Mine was 72.  I have not had any hair loss so far, but with the low does taxol weekly they said it could come as late as week 7.  Anything else you want to know about the taxol I would be glad to  answer.  Some people do get taxol on an every 3 week schedule at a higher doseage.  My dr seemed to think this would be easier and allow  getting started on the herceptin too.  Annette

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  • inthemoment
    inthemoment Member Posts: 538
    edited April 2009

    Hi Helen,

     The web site for the free silk scarf, called It's a Wrap, for anyone who is interested is franceluxe.com and the wonderful woman who is the CEO is Laurie Erickson.  The program is called "Good Wishes"

    Geri

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  • TMD
    TMD Member Posts: 19
    edited April 2009

    Hey ladies.  I hope everyone is well.  My next treatment is 4/22 and I can't wait to get another tx under my belt. 

    Tulipbebe--I felt the same way you did--hungry but not able to eat due to messed up tastebuds.  I lived on toast, soup, and pinepple and watermellon.  After five days I was back to normal.  Also, I gave myself a shot for the first time and did not think I could do it at first too.  Think of it this way--you will have complete control over it--you can help yourself.  I gave the shot in the stomach which was incredibly easy--this from a person who is a wimp!  The good news is that the neulasta shot is small so it is easy to handle and quick.  I found it best to sit down and bend forward a bit so it is easier to grab a little fat and inject the very small needle into the fat.  You can do this and will feel a sense of accomplishment when you are finished!  Let us know how it goes.  

    Any ladies live in the Atlanta area?  Let me know.  Talk to you soon.

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  • jeezy
    jeezy Member Posts: 32
    edited April 2009

    I would love to join this group.  I just had my first treatment on April 16, 2009.  Taxoteer, Cytoxan and Herceptin...every three weeks with Herceptin once per week then every three when other meds are finished.  I do want to say that I had breast cancer in 1996, Radical Left Mastectomy and TAC x 8, plus 30 rads, Stage III with 4.8 cm tumor with 1 node.  Then in Feb a routine mamogram found a suspisious place which turned out to be another primary cancer and not related to the cancer 12 years ago...now lucky for me.  Decided on right mastectomy no nodle involement so nodes were saved. The tumor turned out to be 3.2cm/no nodes and PET Scan normal.  ER/PR-. HER2+.   I've read alot of your posts and they have helped be alot so far.  I didn't have this wonderful resource last time so I am looking forward to the support and being able to support others.

    So far after my first treatment things haven't been too bad.   Thanks to all your posts I've been able to take precautions that I believe have helped me.  I had a Neulasta shot on Friday and have had some bone pain, but I don't seem to have the fatigue and SE's that I had with the TAC 12 years ago.  Slight headache, dry mouth and nose, decadron flush on face and chest.  Appetite ok so far, but I gained alot of weight last time and I don't want to gain anymore so any diet suggestions would be welcome.  

    You are all very brave and strong ladies and I am honored to be a part of your group.  As a Stage III survivor before, I will tell you that attitude is a big part of your recovery and survival...stay strong in mind, rest when you can and you can beat this horrible thing.

    I would love to hear from you... 

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  • tulipbebe
    tulipbebe Member Posts: 85
    edited April 2009

    inthemoment - I was from Edgewater!  Fort Lee was only 5 mins away and I always went there for the great and authentic Korean food.  I really miss that area now that I've moved away.  Loved Hoboken as well and loved Cafe Isla to bits! 

    TMD - I did try the Neulasta shot the way you described it...Just felt like an ant bite.  Not too big of a deal :)  My DH wants to try it next....we're like two kids experimenting!   Anyways...also took the 2 Tylenol and have been feeling fine so far.  No bone aches except backaches which mysteriously came back after being gone for a while.  This week is starting to be normal.  I'll have my next dose on  28th.  Until then, I've been told to keep away from crowds to avoid infection.  

    jeezy - Welcome to the group.  Sorry you have to go through another bc.  Hopefully things have advanced in the last 12 years so most of the SE's are much less by now.  Btw did you ever get chemo brain and neuropathy?  Thanks for the tip on attitude.  We're in this together and we'll stay together until we beat this thing!!  

    Evelyn 

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  • ktym
    ktym Member Posts: 2,637
    edited April 2009

    Jeezy: Regarding diet: I can tell you what my onc told me and what worked for me (finished chemo Feb, and maintained my weight until the end when I got sick and lost some).  She told me that she thinks a lot of it is "comfort eating" and then "rebound" eating when you eat more on those days when you feel good and can taste things. Plus, if people bring you food they tend to bring casseroles etc that carry and keep well that have more starch.  One of the other hidden dangers is fluids.  We try to keep so hydrated and as your sense of taste changes it gets harder for some people to find fluids they like and can drink a lot of.  Many of the sport drinks have a lot of calories, and I found the calories in the juice that I added to the water to make it taste better really added up by the end of the day.

    She told me to exercise every day, and I did, even if it was just a few minutes of walking on really bad days.  On good days I excercised as much as my legs would let me. She also said to weigh yourself every single day and make no excuses.  Don't say "well I ate a lot of salty things yesterday", but weigh yourself every day and pay attention to what the scale says. 

    I can tell you that I think some of what she said about diet is true, but its not all of it.  The steroids and everything else meant my appetite and sense of thirst were off--I couldn't trust them.  So, I counted calories and used that instead of hunger pains.  

    I don't want to depress or tick off anyone who doesn't like her advice.   I know a lot of women decide to get through this however they can and worry about the weight afterwards.  However, I really was worried about it and not gaining weight was a big priority for me and thought I'd pass it on when I saw your post because it really helped me.  

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  • florbo
    florbo Member Posts: 178
    edited April 2009

    Hi Everyone,

    Last night my husband shaved my hair after I cut portions to donate to Locks of Love.  My little boys helped with the entire procedure which made it easier on me.  It was day 15 yesterday and the hair was just falling out in clumps.

    You ladies are right about those headaches.  They went away after the hair was shaved off.  I slept so much better last night.  This morning I was able to wear my wig to church.  A lot of people didn't even know it was a wig.  My head still itches in some spots and is tender to the touch.  I'm wearing a bandana because my head feels cold.

    Have a good rest of the weekend. 

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  • florbo
    florbo Member Posts: 178
    edited April 2009

    Hi TractorGirl,

    When I got my wig, some of the bangs kept on falling in my face.  I asked for them to be trimmed.  The ladies at the boutique said that I should use hair spray first to see if the bangs will stay better.  They said that trimming may make my hair look more like a "wig" than natural hair.  They said if I felt the hairspray didn't work, then I could take it to a salon where they do wigs and see if they can just trim it minimally. 

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  • HelenNC
    HelenNC Member Posts: 84
    edited April 2009

    InTheMoment:

    Thank you for the site. I have contacted them already!

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