Starting Chemo April 2009

AmyIsStrong

Well, my hair isn't falling out yet - only a few strands when I pull on it. So it looks like I will be able to have my real hair at my big meeting tomorrow. I am so relieved about that. After that, I have nothing big pressing, and am ready whenever it happens.

BUT I wanted to let you all know about this free head wrap you can get from franceluxe.com.  I read about it on one of the boards here and went to the website - www.franceluxe.com - and at the bottom of the page is a link to their 'Good Wishes' program. You get to browse the various wraps, pick what you want, and then write an email to their CEO. She will send a FREE one to any woman losing her hair to chemo.  She wrote a lovely letter back telling me how hard they are trying to get the word out about this program - not enough women are requesting them! They are BEAUTIFUL and I can't wait until mine comes. So ladies - click over and browse. It is a wonderful program - www.franceluxe.com

Another baldness related question - a woman who just finished her treatment (and now has very cute curly short hair) gave me some hats and scarves to use. There are two soft little cotton beanies that I love and think I will wear a lot.  They are just very plain 100% cotton solid color. I would like to get a few more and have looked on a lot of websites and never found them. Everything is fancy and elaborate. Anyone know where to get these?
Thank you in advance and I hope everyone enjoys a peaceful and pain free Sunday.

My 2nd tx is on Thurs. Can't believe I am saying this - but I am looking forward to it. Want to keep moving on!

Nadine54

Something my team of doctors told me is I am to have NO BLOOD TESTS, BLOOD PRESSURE, NO I.V. or injections into my left arm due to the BC and removal of lympth nodes.  The condition is called LYMPHEDEMA. 

This is a serious and can be life threatening matter.  For a free bracelet you can go to Alert Bracelet

Emergency Care personnel need to be advised of your condition.  Many people feel they do not need to wear a bracelet, but if you are unconscious - nobody will know!  Be pro-active with your Lymphedema:

National Lymphedema Network
http://www.shop.lymphnet.org/product.sc?categoryId=7&productId=190

If you are going to have surgery and want a bright bracelet to alert surgical staff:
Peninsula Medical offers a free wristband:
http://www.lymphedema.com/alertband.htm

ALSO on the hats I received some cute solid color beanies from HEAVENLY HATS .  www.heavenlyhats.com   What I did on a few caps that they sent me was donate to our resource room for others to have.  Everything was new and just beautiful. 

Nadine

sandlee79

Thanks!!!  I have posted as you suggested and will try the udder cream!  Appreciate the suggestions.  God Bless!

Sandy

ikat

AmyisStrong good luck at your meeting I hope everything run smoothly for you.

Hope everyone had a nice weekend. 

BetsyBuzz

Ok...so does anyone have any ideas for the sore head? Does lotion work? My DH shaved my head on the lowest setting today and I notice some very red irritated spots on my scalp. He said he saw them before he shaved. We had done a buzz cut last Monday after my 2tx. 

Any or all input helpful.

Thanks,

Betsy

tulipbebe

Betsy....I was wondering the same thing.  Also......are there instances of ingrown hair once the hairs try to grow back?

I had Tx #2 on Tuesday and wasn't doing so well.  Went in on Saturday for vitamin and dextrose drip.  Do any of you get the drips?  Do you get it before the chemo or after the chemo?  I couldn't eat much of anything so was feeling very weak.  Just laid in bed all this long weekend.

Anyways...I'm out and about Sunday.  Tried using the bandana for the first time.  DH was nice to help me tie it and stuff. 

Nadine.....I don't know much about my libido.  Haven't had the urge yet.  Was discussing this with DH and he said he's almost afraid since he read somewhere that bodily secretions may contain traces of chemo.  Guess he's a little scared!  Anyone asked their onc about having sex during chemo?  I suppose it's ok yeah?

sakura73

 Betsey- I use ordinary sensitive skin body lotion, and also bergemot oil (recommended by a friend who had to have her head shaved for an operation). So far so good.

Tulipbebe - The chemo drugs are gone from our bodies within 48 hours and so it is fine to have sex after that first 48 hours. DUring that first days though, all our bodily fluids contain the drugs, including saliva. I don't kiss my DBF on the lips for the first 2 days, to be sure.

I went to an info seminar on sexuality and cancer and was told it is totally fine to have sex if you want to. I have wanted to, and so I have. It is an important part of feeling like I still have my life - chemo has not totally taken over things. We use lubrication because chemo/Zoladex makes things a bit dry. Definitely not as much sex as pre-chemo, but we both feel pretty content. So if you fancy it, go for it!

DUTCHinAtlanta

Hi Folks,  My wife is not a computer or Internet person, so I'll post for her, if that's OK with y'all.  She had her first T1C on April 30 and Neulasta on May 1.  May 3 was not a good day with constipation, no appetite and lots of body aches.  Codeine took care of the pain, but made her nauseous.  Claritin seems to help a lot.

Onc is great at email communication, even on a Sunday.  Two responses with answers to questions within 15 and 45 minutes, respectively; and these were from the doc himself - not his nurse or a service.  Absolutely unheard of for a doc in myprevious experience.

 Taking it one day at a time.

tulipbebe

Sakura - Thanks for that info.  It's definitely very helpful!  I try to keep things normal and live normally.  DH and I has been married for 8 years so I definitely need to keep the flame going!  

DutchinAtlanta - Try some mild laxatives or stool softeners.  I get mine from the Onc.  Hang in there.  

HelenNC

Today is a good day!.

There! I didn't think I'd be able to say that again! Had 1st chemo last Tues. & went downhill from there. The pain from the Neulast shot was unbearable. I called but the nurse said they couldn't do anything. Be sure...I'm going to ask in person next course.

Welcome to Dutch. Wonderful you are posting for your wife! There is a lot of great help on this board.

inthemoment

Hope everyone is off to a good week - to those getting treatment this week, I'll be thinking of you!

Betsy - Re: head soreness - I'm with you on that one - no redness, but after ther buzz, could not get comfy - tenderness all over scalp.  Yesterday I took advice from this board, and used a gentle motion with a sticky lint brush to sweep out those little nubbies on the scalp - well, three sticky covers later (!!) and a ton of nubbies out, and my scalp does feel better - hope it stays that way.

Dutch - Welcome to you and your wife - there is a wealth of information and support here for you both.

HeleneNC - So glad you're feeling better.

Kathy - How was Sommers?

AmyIs Strong - Hope your meeting goes well, and you can feel less stressed after about the hair.

Sakura and Tulipbebe - Thanks for reminding about the intimacy, sexuality issues that surround treatment.

For those having treatment days today - (((hugs))).

Geri

shannon56

Betsy -- I use a massage oil on my head anytime it feels itchy or dry.  Also use Oil of Olay body soap to wash my head.  The only problem since I went to a near hairless state is a cold head if I don't cover it.

jlp

Hi all, hope everyone had a good weekend - we had continuous rain on Sunday so I did inside stuff like ironing - feeling almost normal after my 2nd treatment which was the 22nd April.

I did have a strange experience this a.m. I take temazepam to help me sleep, and today I just didn't want to wake up, and had very weird, vivid dreams and a hallucination - I could feel my husband was in bed and touching me even though he's out of town!  I also have some swelling and soreness of my right hand. Otherwise, I am missing my hair - like Shannon, I did not realise how good a job it did of keeping my head warm!!!

As far as scalp sores go, one tip I read was to use baby shampoo, as it has something in it to prevent cradle cap, and can help with itchy scalp etc. I've been using it since I went to the buzz cut, and I've had no problems.

aris

Okay, so now I have a rash on the part of my head that I put sunscreen on last week. I am assuming it's some sort of dermatitis from the sunscreen. When I wear a baseball cap, part of my head is exposed and I dont' want to get a sunburn. Anyone have a good sunscreen recommendation?

 Since Saturday, I've been feeling so much bettter. It's amazing! I go back for my 3rd AC (dense dose) on Weds and am not looking forward to feeling under the weather again.

Today is my daughters' birthday. They (twins) are 7 today. I'm so lucky to feel good on their birthday. 

 Hope everyone is hanging in. This is a tough path.

Pam

tulipbebe

Hi Pam - I'm also doing dose dense AC.  Do they put you on the IV drip before or after the treatment?  I so feel ya on feeling lucky.  I felt like a million bucks on Sun when I could take my 2 year old to the park. 

Nadine54

On the topic of sex or no sex:  I finally broke down and pulled out one of the many books my Onc gave to us.  Didn't want to be reading "Sexuality and Cancer".  (For the woman who has cancer and her partner).This book is published by the American Cancer Society.  I encourage everyone who has additional questions to see if you can pick up a copy at your treatment center.

On EFFECTS OF CANCER TREATMENT ON FEMALE SEXUAL DESIRE AND RESPONSE:  It states: " At first, concern for survival is so great that sex is far down the list of needs to be met.  This is quite normal.  Few people are interested in sex when they feel their life is being threatened.  When people are in treatment, loss of desire may result from worry and depression, nausea, pain and fatigue.  Cancer treatments that disturb the hormone balance can also lessen sexual desire.  If there is a conflict in the relationship, one partner or both might lose interest in sex.  Any emotion or thought that keeps a woman from feeling excited can interfere with desire for sex.  Distracting thoughts can keep her from getting aroused.  her vagina then stays tight and dry, making intercourse somewhat painful.  Many people who have cancer worry that a partner will be turned off by changes in their bodies by the very word "cancer" . THIS IS A DIRECT QUOTE FROM THE BOOK

It continues to say having sex during chemo is safe...and also says generally few days before the next chemo there is a normal interest in sexual activity.  It also says it may not be the normal that many would have known before all of the surgeries and chemo treatments.  It does address radiation and other forms of cancer in different parts of the body.  The book is 80 pages long. 

The book is right to the point and tells it like it is.  In my house, I told DH the other evening that I had no sexual desire.  I was tactful of course.  He told me he felt that he wouldn't say or do anything and take the direction from me.  I was worried that he may feel unwanted and so on.  I really think DH was relieved that I brought the topic up.  He had no idea that I had no desire at all.  I explained how I felt, looked both mentally and physically and he was understanding.  It also says in the book that simple things like a hug, kiss, passing touch also helps.  For me that is all I can and feel like I can do.  So as the book says, what ever you do or do not feel like doing is okay and normal.  And it also states there is no way to give the chemo drugs to your partner.

I will be happy to PM anyone who may have additional questions...this book was one I really didn't want to read, but now am glad I did and it clearly answered many of my questions.

My personal feelings are we may not feel we look good, and mentally for me just facing each day and wanting the next to be a better day is pretty much all I can handle right now.  Then of course the calendar constantly reminds me of each upcoming treatment...that alone makes me sick with the thought.  I have a strong marriage and trying to be tactful with words one can improvise. 

Hope this helps.

Anyone having troubles with excessive mucus and nosebleeds?  I do smoke and far less however.  But one nostril feels like a war has taken place.  After treatment 1 I had this problem but it all finally went away.  This time its worse and is lingering.  I am going to talk to the Onc about it when round #3 comes up. 

Also on round #3 it is my birthday.  I have been down about having to have treatment and the shot from hell the next day...anyone have suggestions on how I can turn my mind around and make this a positive day even with having chemo.  Generally after chemo I am just mentally pooped out from having to be poked so many times.  Reminder last treatment I ended up with 5 poking before a vein was hit.(4 pokes blew the veins)  I am not going to take my blood pressure medicine before I leave because of the diuretic.  And the one cup of coffee before we left is off limits this time.  I drank tons of water before we left but it didn't help.  So hope no coffee or BP medicine will help find those veins on the first poke this time.  So back to the birthday any suggestions on maybe taking something for other chemo patients and nurses??? Want it to be a happy day not a drudge day!

Hope everyone is having a good day!

Nadine

AmyIsStrong

Am off to my big meeting, feeling strong and ready! Thank you all SO MUCH for the good  wishes. My hair is still here and I am so glad I don't have to worry about that today. I am getting it buzzed down tonight because it is falling out enough to make me ready. And we will shave it when the time comes.

Will post tonight after the meeting and haircut. How good it feels to have this forum where we can be cheerleaders for one another.  I never was a cheerleader before, but it feels good to be one now! GO TEAM!

Nadine - when I was at the physical therapist one time, a lady came in with a big bag of fortune cookies for everyone to share. They were individually wrapped, and everyone there had fun opening them and reading the fortunes. At first I thought it was strange, but I could see that it perked everybody up. Maybe you could try that on your birthday. I know you can buy them at a Chinese restaurant in bulk.  Just remember that by NEXT birthday you will be a whole other place.

Amy

ikat

Nadine I like Amys' idea of the fortune cookies, but if not them. What about mini cupcakes, or chocolatet?

Geri Had a great time at the quilt show. Very pretty quilts. How was your week end?

Dutch welcome to you and your wife. Let her know we are here for her.

Pam Happy Birthday to your daughters, enjoy the day.

kathy

Nadine54

IKAT & AMY:  Great idea's ladies.  Seems the group who is having chemo on the same days I am are pretty much the same folks.  Of course no one looks happy.  I like both of your idea's.  I am one of those who worries about others far more than myself...so with that if I can bring a smile to another's face that will be a great day for me.  Not knowing what others can or can not eat is a problem.  They changed my chemo to 8 am...I didn't like being tied up (sure feels like it) with half of the day shot.  Since I will be there probably around lunch time...hate their food...I think some kind of snack would be great...thanks a million for your suggestions. 

Today has turned out to be a great day...morning nap...got dressed at noon. Hubby got me another leather jacket...now hope it stays cool so I can wear it.  Can't ride my motorcycles yet and doubt my helmet will fit with no hair anyways.  Guess there won't be any riding this year without a helmet. Idaho is a state that doesn't require helmets if your over 18.  Decided once chemo is over and the SE's and meds are done then I am going to ride a short ride just to feel alive again.  Smoking is top of my list of things to quit once the treatments are over.  Doc says to wait on quiting for now...something new having a doc tell you that. Got my mind already for quit day.  And since I shake so much little blush, eye brow pencil and some eye shadow is about all I can muster on good days.  Going to do the works on make-up as the hair grows back.  Decided when all is done I am going to look as healthy as I can.  Been sick and tired of being sick and tired to long...yup my "good days have started" so I am feeling spunky again...low in energy and still napping once a day and still loving being able to see clearly.  Brain is slowly waking up!  Hoping to go do some shopping tomorrow if hubby is off.  I hate shopping but its an excuse to drive an hour away to a larger town and get out! 

Sending good thoughts to everyone!  Keep smiling and keep your chins up...we are getting through this.

Nadine

minevicp

Hi - I started chemo on April 24, next treatment is May 15. I'm on CEF x 3, then taxotere x 3, then Arimidex for 5 years. My first week after chemo was brutal because I felt so dizzy and weak; I went to the hospital when I realized I couldn't drive safely. Turns out my potassium was low, has anyone else had this side effect? My family dr. caught this (not the hospital = hah) and told me to load up on broccoli, bananas, and o.j. Now I feel much better. Have been told that I'll lose my hair between my 2nd and 3rd treatments, so here's the plan: On Thursday I go to my stylist, get her to cut it off to about 1" and then dye it the most wicked red I can find! Then at least I'll look good until it comes out! Good luck to us all with our treatments, this really sucks.....

connette

 I started chemo in April, also.  But have had problems with the computer.  I'm not that great at computer skills so it didn't take much to frustrate me.  My DX is the same as Shannon56.  ER-/PR+ and HER2+.  I had a lumpectomy on March 13.  My treatment plan (at this time) is 4 cycles of AC (I started on April 15), radiation, 4 cycles of taxol/carboplatin and herceptin the rest of my year.  I have just started losing my hair and I'm not sure when should shave my head.  I have good days and bad days (like everyone else).  These discussions are wonderful.  They help build confidence, courage and strength.  Thank you, everyone.  I am a Kindergarten/1st grade teacher and I always say there is no such thing as a dumb question, , , so here it goes.  Does DH stand for dear husband?  Connette

tulipbebe

Welcome Connette and minevicp! 

Yes DH stands for dear husband  

hrf

I also started chemo in April ... taxotere and cytoxan - my scalp is sore and my hair is starting to come out. Tomorrow I get my blood work and treatment #2 will be on Thursday. Following the first chemo and the Neulasta shot, I had a lot of flu like symptoms, headaches, bone pain and general miserableness. I also have a rash on my neck which has now turned into incredibly dry, rough, peeling skin .....my neck looks like it has aged 25 years.

HelenNC

hrf: sounds like we're on the same regimine. I felt so awful after the Neulasta shot too. I am going to talk to my onc about if there's something she can give me to counter the pain. Claritan didn't do it. Neither did Vicadin.

My name is Helen too!

HelenNC

I was just thinking....isn't it amazing now how the smallest thing can make us happy?

I had the most delicious push up water ice popsicle. It was as if someone gave me fresh lobster w/drawn butter! It was wonderful!

tulipbebe

I've been given Neulastin....the Onc said it's the same as Neulasta.  So far, I haven't had major bone ache or anything.  Just a slight back ache which I had previously anyways.  Had my second shot of that last week and I'm feeling okay so far.

lissette80901

tulipbebe- My onc said definitely use condoms because the chemo can secrete and burn.  I didn't have the nerve to ask about oral sex.  It doesn't matter since I'm single and the guy I was dating disappeared when I told him about my dx.  But it provided a good laugh!  You should ask your onc about the sex...

ikat

Minevicp that's the way to go Red is a great color.

Connette the boards are great full of wonderful information. 

hrf definitely talk to your onc they don't want you to be uncomfortable. I have round 2 on Wed. they are changing my meds because of bad SE. 

Lissette  I have found that with this dx you find a lot out about the people around you, and unfortunately some people are not worth out time or thought. Thank you, about the condom info (hadn't thought of that one). 

AmyIsStrong

Great news from my world, ladies! Yesterday's big client meeting went GREAT. It was actually a pretty important meeting and will hepl the client determine  who their vendors will be for some major business. I felt I represented myself very confidently and came across very well. The whole thing was very positive and I am very pleased how it went. And it was a big help to have my hair for that meeting and not have one more thing to worry about. WHEW.

But the hair was starting to fall out more. So last night a friend who is a hairdresser (and recent bc survivor) came to my house and buzzed my hair very short. There is a little left on the sides and a bit more on top. She said I may get a few more days out of it, that it isn't falling out too badly yet.It is somewhat shocking how short it is but FAR MORE shocking how GRAY it is! I've colored it for so long, I guess I never realized. A LOT more salt than pepper!   This will give me a bit of time to get used to the transition before total baldness.

My next tx is Thursday also. Blood work tomorrow. My veins aren't looking good - big bruise from last week's stick. Not sure where they are going to get the blood. Am a little nervous about it. Anyone else have this problem? What do they do, since they are limited to one arm?

AmyIsStrong

I did ask my onc about oral sex. Specified I wanted to know about both giving and receiving. (Figured that since he didn't know me pre-dx, he should know I still have some fire in me!) He said it should be fine and didn't express any concern whatsoever. So I figure we're free to do what we want.

He did say at the end of our talk, that I will be having alternate appointments with his nurse practitioner (a woman), who, he mentioned, is very interested in psychsocial issues as well as human sexuality. I think he was giving me the message that if I had any girl-type or sex-type questions to save them for her. I thought that was pretty funny!

Also wanted to be sure to thank everyone on the board for your good wishes re my meeting yesterday. It is important to keep up our non-cancer-related lives and this was a big thing for me. Felt so good to know you were behind me.

Good luck to those of you getting the haircuts. Be strong and remember it is only for a season. And to all of us getting tx this week, I hope we all have a smooth time.