Starting Chemo in JAN 2007

t4t

Well good luck to all going in for a treatment this week. Tae will go in Friday for #2 AC.
Mizsissy, sorry you had such a rotten day. Hope your treatment team can get their act together. Moe, Larry, and Curly Joe could probably have done better.
Thanks, Melia, for that tip on the prescription mouthwash and the biotene. Tae has some mouth sores that make eating a torture. She will only eat soft foods now. Is anyone else having blisters on her tongue? It might have something to do with the spicy food she was enjoying a few days ago. Also, Tae is trying to stop the nausea meds. But, like today, she had none and this evening started feeling a little queasy. So she took phenergan so that it would not build into something unmanageable.
Remember the discussion about the cost of neulasta? We got a statement today showing 6MG of neulasta for $3375. WOW I hope TRICARE covers that. The PET scan was $3K. I am just an old retired soldier - shudda been a doctor. No! I don't think I could cope with all the suffering they encounter.
You ladies are strong. Hang in there. We need some more pep talk from Rita and Mizsissy.

Terry 4 Tae

robertin

Wow, lot's of traffic today. Did well again today, and the nurse called that my white blood count was normal. Yeah. So, I've been fostering this mild cough for a week now, and now the nose is running and my left eye hurts and my ears and throat are starting to hurt. So, the perfect solution is that Airborne stuff, but the onc nurse says "no way." So, I bought time release vitamin C, which is allowed. The local pharmacist and I are becoming good friends. She even knows my first name, and my first name is Ina, not easy to remember. Oh, I got to tell you guys. I did my blood test yesterday and so you put have to put that wonderful Lidocaine on your port area and then saran wrap and tape. Well, I just found out that Press'nSear works just as great, and you don't need tape.
Amera and Jan, you guys look beautiful and I feel old. Okay, so I got 60 little 1 mg pills of Ativan. Well, since they make you sleepy, I've been using one every night, for the last 8 days now. I sleep like a baby, which I haven't done for years. I've found my favorite pill. So, I asked the nurse, "can you get addicted to Ativan?" "Oh, yes," she says, and I just looked it up online. Ativan is VERY addivtive. Needless to say, I'll be sleeping without Ativan tonight and I guess with the remote control. Darn!

skyedivine

Regarding the mouth sores, I've been able to avoid them entirely so far by rinsing my mouth and throat with warm salt water (one half tsp to two cups water) every time I have a meal or snack, ESPECIALLY on chemo day and that first week. Also avoiding citrus, vinegar, spicy foods, tomato and alcohol helps very much. Slippery elm bark tablets also soothe and coat. Sure it's a bother but it's so worth not getting sores. Hope that helps. - Skye

Aladora

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Aladora, how are you doing? We are still waiting for an update!!!

Mizsissy

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Oy vey, what a busy few days! Ahh, such is life with a toddler who has recently started hugging my leg all day when I try to do anything but play with him! Seriously, he puts both arms around one of my legs and hangs on!

Okay, first off, Mizsissy, I am so sorry to read about your last few days, I hope that it gets better from here!

Now, my update.

My first chemo was on Jan 22 and my next one is in 5 days, on Monday. The first one went okay, a few bad days feeling queasy and not sleeping. On day 4 my husband got fed up and went to a pharmacy that was open late. He spoke to the pharmacist who told him to get me to take 2 gravol. Well, I slept that night and the next day my mother came and took the monkey out to play for 2 hours so that I could nap. Well! I woke up from that nap feeling like my old self again!

So, lesson for nest time...GET SOME SLEEP! I also lost a bit of weight, about 6 pounds in 4 days because I was not eating at all. I saw my doctor (GP, I had to take the kiddo in for his 18 month check up, only a month late!) today and I spoke to her about maybe trying some meal replacement shakes for the few days that I'm not eating. Well, she not only thought that this was a good idea, she gave me a few bottles to try!

The first week I had some weird taste issues which are almost gone now, the only lingering one is that sweet things don't taste as sweet anymore!

I also had to talk to my doctor about feeling dizzy. She took my blood pressure and as expected, it was quite low. Now, I've always had low blood pressure but this was lower than normal. She told me to stay hydrated and to eat salty foods! So, couple that with the not losing weight instructions and I'd like to say "heeeeeeeello potato chips!"

And last but not least, my hair is definitely falling out. Blerg. I cut my hair really short before chemo and donated it to a local version of locks of love. (It was about halfway down my back) But the other day I had to admit that it was actually falling out. I'm hoping to hold on until this weekend before shaving it since my older sister will be here and she wanted to be here for me when I shaved it all off. I have to admit, I'm pretty pissed about my hair.

The ugly hat is making it's way across Canada right now. I sent it to Yellowknife in the Canadian Arctic, then it went to jsut outside of Toronto and yesterday it arrived in Ottawa at my sister's house. She will then send it off to Norway then it will make it's way to America where it will tour all around the States before popping off to Australia then back to me finally!

Anyways, let me try and post some before and after shots of my hair.

Before:


Right after:


How much was cut:


The next day at home:


The ugly hat before it went on it's merry way!


My little monkey in the ugly hat!


Whew, that's a lot of pictures and a lot of typing!

Signing off so I can go to bed, the monkey has been waking up at 6:30 recently, ack!

Susan

rachel46

Wow, lots of posts. I haven't been on for a couple of days.

Great pics Susan, quite the hat! Wow you had some long locks!

Amera I am also not getting any neulasta, etc, unless I need it. First blood draw was good. I had a bit of fatigue in the middle of the cycle, but manageble.

Someone posted a few pages back about wearing a mask. I am an eye doctor and I was told I have to mask to see patients. I get 2" from so many people every day. I probably should mask anyway, but after 20 years my immunity was so good I never got sick, I only masked if I had a cold. It takes some adapting to have a mask on all day long. I am going on vacation next week and decided to mask when I fly, when I was healthy I always got a cold when I flew, I am going on a cruise and want to be healthy! I can't wait, it is so cold here in MA right now!

We all seem to be on the same hair loss schedule. I just noticed it started today (day 13). The buzz is planned for tomorrow.

Have a good day everyone, and hope you are starting to feel better mislizzy!

Sirgen

Rebecca

Good morning everybody. I slept through the night ok for a change, but I definately feel much worse on the second cycle than I did on the first, but I guess I will live

I hope everyone else is having a good morning. I have to get off my butt and go to work this morning....hope I can hold out.

Anyone else develop a non-sickness related cough from the chemo? I started coughing about a week ago, but no infection, fever or discomfort. My onc gave me some cough medicine and said to take mucinex.

good day to everyone, I will check back in when I get home from work.

NOLONGERREADINGORPOSTING

T4T,

I had a problem with a sore mouth too. You need some Biotene toothpaste (regular toothpaste is much too harsh). Keep a jar of salt and a glass next to the bathroom sink. Tae should brush her teeth gently every time she eats and then rinse with warm salt water.

The salt water is really best at keep the mouth in shape and sores from developing. Do you have the prescription mouthwash (Magic Mouth); it's very strong and numbs your mouth, but you can also dilute it heavily with water. If she already has mouth sore, the Magic Mouth has medicine that will help them clear quickly.

Avoid any spicy or acidic food. The mouth is in a vulnerable state because the chemo kills the skin that lines the mouth. But with good hygiene, everything will heal. My mouth was full of sores, but now it is fine...

I am still reeling in shock about the timing of her first Neulasta shot...I think the chemo would have just killed everything in the shot and cancelled it out..doing no good and wasting your $4000 for the shot!! Have you thought about changing doctors?

Mizsissy

NOLONGERREADINGORPOSTING

Aladora...

So nice to hear from you and see your wonderful pictures!!!

How generous of you to give your beautiful long hair away..are you going to get a wig? We think you're beautiful without your hair anyway. If you go back a few pages (p. 9 I think) I posted some pictures of myself in turbans and fake bangs...a comfortable and easy alternative to a wig. You can get them at www.chemosavvy.com

ON your weakness and fatigue: Are you getting your bloodcounts checked regularly? Blood counts can get low. Most of us are getting Neulasta or Nuepogen to build our blood back up.

Sounds like you are getting AC every three weeks..for how long?

Your little monkey is Adorable!!!, Aladora.

Stay in touch!

Love & hugs,

Mizsissy

NOLONGERREADINGORPOSTING

OK..there's lots of posts here and lots of conversations to keep with, but WHAT IS THIS NONSENSE ABOUT OLD LADIES!

Hey, I bet I'm the senior here. I'm 58 and proud of it. This is the best time of my life; I think I know more about life than I ever did and I'm enjoying it. EVERYBODY gets older, there no way to stop the clock, and there's nothing wrong with a few wrinkles.

I just think it's great that we can have a group like this of women, all different ages, who have so much in common and can talk to each other.

Robertin, you are beautiful without your hair and don't forget what my husband said about you!!!

xxxooo

Mizsissy

Lynn12

Good Morning,

I'm feeling pretty grumpy about going to tx #2 tomorrow. I'm not worried about the actual tx, but not looking forward to feeling crappy again. For those who have done 2 or more, here's a poll asking how your SE were after your 2nd tx compared to your 1st:

Lynn12

Woohoo, I actually successfully put the poll in.

Anyway, nice to hear from everyone, it always helps! DH said to make sure I get out of the house today and do something for me, so I think I'll go earring shopping to get more danglies.

Melia, how are you? I think you had tx on Wed and we haven't heard from you.

Amera, you had yours yesterday, right? How are you doing?

Anyone else from this week we haven't heard from? Sorry if I forgot you, it's so hard to keep up.

Robertin, I have Ativan and Ambien for sleeping. I don't take them every night, but when I do take them, I alternate between them. Hopefully that'll help me from getting addicted to them. I had sleep problems before this bc nightmare, so I definitly needed something once I was diagnosed.

Mizsissy, you sound like you're feeling better, glad to have you back to your wonderful self!

Have a good day my friends!

Lynn

sharon56

well i had my 2nd last Monday and today I am feeling better . The second was not as "heavy " feeling of nausea and vomiting but a "low" and longer recovery . I was borderline nauseas and had metal mouth and pasty feeling so everything I ate was making me more nauseas . We have a community care program here where a nurse comes in every week to check up on me while on chemo .
She came in yesterday and made me feel much better . She said that I may have become dehydrated last week if I was not careful . With the diarrhea I had too it was not good . So she will call the cancer clinic and make arrangements when I have my next chemo on Feb 19th to get hydrated at home and keep an eye on my progress . This is great , the support I a getting here could not be better . And the nurse indicated that I did not have to suffer as much as I did ..... thank goodness it makes my last dose of FEC a little easier to tackle .
I do not get any shots , just on a 3 week regime 3 FEC , 3 taxotere . They say the taxotere is completely different .
Bone pain and swelling , but I will tackle that when it comes .... I have stage III BC so that is why I am getting the dose dense treatments it give your body time to get its BC up and I have had no trouble with that .

mizsissy everyone hope that your troubles are behind you today . I will be here until April at least so this thread will be a long a good one .
Then after that I have 33 round of radiation so it may be until the summer !
Its great to read all of your posts it helps when its so darn cold and snowy outside

Aladora

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Aladora...

ON your weakness and fatigue: Are you getting your bloodcounts checked regularly? Blood counts can get low. Most of us are getting Neulasta or Nuepogen to build our blood back up.

Sounds like you are getting AC every three weeks..for how long?

Your little monkey is Adorable!!!, Aladora.

Stay in touch!

Love & hugs,

Mizsissy

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Mizsissy, I was not sure if the comments/questions about fatigue and blood counts were directed at me. If so:

I am on FEC100, every 3 weeks, for 6 cycles. I have my second chemo coming up on Monday. I have not yet had my blood counts checked yet but I have to go in on Sunday to get poked to make sure that my WBC are high enough for chemo on Monday. I'm not actually feeling weak or tired, just a little dizzy when I get up to quickly.

I'm not getting Neulasta or Nuepogen shots, nor have either of those been mentioned. I'm not sure why but it might be because I'm in Canada? Or it might be that since I've not yet had my second, they want to see how my WBC are after the first?

/shrug I'm really not sure...it's something I will ask at my appointment tomorrow. (Check up post 1st chemo, pre-second one I think)

Here's a hair related question for anyone who has lost theirs...if you lost your eyebrows, did they fall out at the same time as the rest of your hair or later on?

And just because I can't resist showing him off, here's another 2 pictures of my little guy!


Last November, his first time in snow!


A few weeks ago:


I just can't resist showing him off!

Aladora

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I do not get any shots , just on a 3 week regime 3 FEC , 3 taxotere . They say the taxotere is completely different .
Bone pain and swelling , but I will tackle that when it comes

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Shorti, it sounds like you are on a similar treatment as I am, just a little bit ahead of me. Did you find that the last of the three (I'm not sure if it was the F, the E or the C) gave you an allergic reaction? My chemo nurse warned me that I might feel as though I was getting a bit of a cold, but boy was that an understatement!!! About 15 minutes into the 30 minute dose, I felt like my sinuses were completely stuffed up and that feeling moved from my nose all the way to the back of my skull! I thought my head was going to explode! I spoke to the nurse and she said that next time we will give it over 45 minutes instead of 30, to allow my body time to process it better. I hope so!

Did you get any bruising at your iv site? I had a loony sized bruise that has now taken 2 1/2 weeks to finally fade! Just in time to get a new one on Monday, go figure.

Hope you continue to improve and feel better!

Susan

NOLONGERREADINGORPOSTING

Aladora,

Your little "Monkey" has such a sweet, good natured face; I can see how you are totally in love with him!!! What a nice little fellow to keep you company now!!!!

Neulasta and Nuepogen are made from human hormones and are both extremely expensive. Neulasta is $3700 per shot but it lasts for a few weeks; Neupogen you have to get every day for a week at about $300 per shot. It could be because you're on a government program and they have to cut costs...but I think if they space out your treatments and constantly check you, they can control things. Ask about it though!!

Mizsissy

Aladora

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Aladora,

Your little "Monkey" has such a sweet, good natured face; I can see how you are totally in love with him!!! What a nice little fellow to keep you company now!!!!

Neulasta and Nuepogen are made from human hormones and are both extremely expensive. Neulasta is $3700 per shot but it lasts for a few weeks; Neupogen you have to get every day for a week at about $300 per shot. It could be because you're on a government program and they have to cut costs...but I think if they space out your treatments and constantly check you, they can control things. Ask about it though!!

Mizsissy

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I will ask about it for sure! Thanks for the info and also for the lovely compliments on my little guy. He really is such a joy to have.

Robbin65

Aladora,

OMG. I can't believe your pictures. They are going to be just like mine when I take them. My hair is all the way down my back too. Yesterday was the first sign of it starting to fall out, little by little only when I brush it, yesterday was day 14 of chemo.

I will take pics too and post them.

I can't believe we have to do this crap!!

Anonymous

Hi all - Just a repeat of my offer to try to chart everyone's chemo dates. PM me with your tx dates and type of chemo. I have 3 of us in so far.

I had some bone pain last night from the neulasta in my back, hips, and legs. I could barely move, but I woke up fine this morning.

Viddie - how your finger?

Rebecca - I think it is hilarious that the snack basket was sponsored by Marinol. Thanks for that good laugh. I took Marinol after my first chemo and it was horrible. I called the onc and told him I wouldn't take it again, so they adjusted my meds some. Too bad I couldn't tolerate it because it totally worked for the nausea.

T4T - I have 2 brothers in the military - what branch were you in? I remember having to go to all the family meetings before my brother deployed and learning all about tricare.

Reobertin - my nurse told me the same about Ativan, but said that they could give me something else to help sleep on other nights when I don't need the ativan for nausea.

Aldora - good to see the hat again. My 6 year old has one just like it with a matching scarf. She thinks it's very fashionable! Your son is adorable - thanks for the pictures.

Aldora & Susan - I'm glad to see there are a few of us on FEC. It's the C that gives you the sinus/headache thing. They gave me tylenol and it helped a bit.

NOLONGERREADINGORPOSTING

Cool Jan...thanx for taking on this project!!!

I'm doing TC (taxotere cytoxan) dose dense every two weeks start January 18, end March!

Mizissy

Lynn12

Hi Jan,

I'm doing TC every 3 weeks for a total of 6 treatments, started Jan. 19th. Last tx is May 4th.

Thanks for doing this!

Lynn

Rebecca

Aladora,

What a cute little guy!

For me, my eyebrows actually were my early warning sign. Right before I started to loose other body hair (arm pits etc) I had a good friend look at me and ask me if I had tweezed my eyebrows. I was taken aback, because I have NEVER done this, but sure enough when I got home and looked, my eyebrows were noticably thinner, and I even had a little bald spot. The good news is that they did not fall out completely, they just thinned. I think they will last a few more cycles, but i am also pretty sure they will be gone by the time this nightmare ends.

Anonymous

Just curious how we are all covering our heads after hair loss, so here's a poll:

Rebecca

RobbinJaye,

Did you know that if you can cut 10 or more inches off your hair you can donate it to Locks of Love, and they make wigs for people who lose their hair permanantly with it. The wigs are distributed at NO COST to the recipeint, but they are entirely dependant on donations of hair. I did this with mine, although I was advised to hold onto my hair until it starts growing back. When it does, I am going to send my cut ponytail off to them.

here is a link:
http://www.locksoflove.org/#item2

Hang in there...as a formerly long haired person as well I feel your pain. I did find that having it shorter made the loss more easy to manage though, so you might consider cutting it sooner rather than later. Having a reason to cut it early (the donation) helped me make the plunge.

Hang in there, and feel well

Rebecca

Hi Jan,

I am doing TAC every three weeks for 6 cycles. Started 1/18 (Thursday) but I had to switch to Wed to accomodate my teaching schedule, so my second was yesterday 2/7.

Thanks!

Aladora

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RobbinJaye,

Did you know that if you can cut 10 or more inches off your hair you can donate it to Locks of Love, and they make wigs for people who lose their hair permanantly with it. The wigs are distributed at NO COST to the recipeint, but they are entirely dependant on donations of hair. I did this with mine, although I was advised to hold onto my hair until it starts growing back. When it does, I am going to send my cut ponytail off to them.

here is a link:
http://www.locksoflove.org/#item2

Hang in there...as a formerly long haired person as well I feel your pain. I did find that having it shorter made the loss more easy to manage though, so you might consider cutting it sooner rather than later. Having a reason to cut it early (the donation) helped me make the plunge.

Hang in there, and feel well

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This is exactly what I did with mine, only I donated my hair to a local program that does the same thing. (Locks of Love is an American program and I'm in Canada)

It was really hard to take the plunge, but I'm glad that I did, I can only imagine how hard it would be to not only lose all my hair but have it be long strands that I was losing. At least now that my hair is short, I'm only losing an inch and a half of hair!

One thing that is a good tip if you are donating your hair. Put all your hair into tiny little pony tails and cut each one off individually then bundle all the hair into one pony tail. That lets you get the hair off evenly and actually results in more hair donated.

If you click the picture below to enlarge it, you can see what I mean. The hairdresser put about a dozen elastics in my hair.



The only difference up here is that they won't use coloured or permed hair, whereas LoL will.

It's a great thing to do, no matter what the name!

Susan

Anonymous

For our calendar of chemo dates here's what I came up with...

I set up a calendar in Google calendars. You'll have to set up a google account to view it, but that's easy and free. I know it's a bit of a hassle, but the best way I could come up with for something that we could all view.

To get started I need to invite you to view the calendar. All I need to do that is your email address. Then you will receive an email invitation to sign up for the calendar. Once you have access you will be able to add and change your own chemo dates. (Or you can still send them to me).

So if you want to add your dates to the calendar (or view it), please send me your email address. But PLEASE don't post it on this forum where anyone can see it! Click on my username on the left (above my dog) and that will link to my profile. On the bottom there's an option to send a "private message" that way the whole planet won't be able to see your email address.

I hope this works!

Rebecca

Yay Aladora! I really felt that it made the loss of my hair more bearable to think that something good came of it. I had my hair in two ponies when they cut it, and I got 12 inches.

You have very beautiful hair...It was wonderful of you to donate it.

Alas, although it made the whole thing easier to face I was so traumatized that there are no pictures of the process, although I have a few of the resulting haircut

viddie

Hi everyone,
Rebecca, how are you feeling?
Tae, Good luck tomorrow.
Robertin, I just got lidocaine. I love your happy smile- You look great! I have attivan too, but also afraid to use it too often. I am going to ask for sleeping pills today. Someone said that Ambian CR is supposed to work good, but I am not sure about addiction.
Sirgen, A cruise sounds fantastic right now. Have a great time!! You deserve
it!
Susan, You look great! Glad you are feeling better. Your son is adorable.
Jan, Thanks for taking on this project.
Amera, Lynn and anyone else going today or tomorrow, Good luck!
Mizsissy, Did you have a nice time last night? I am 56 and also proud of it!
Robbin, I know how you feel. My hair JUST started coming out this morning in the shower. Not a lot, but enough to set the stage. The beginning!!
Sorry if I left anyone out.
I am on my way back to cancer center for 2nd infusion for antibiotics. I do not know why they do not give me pills. My finger is a bit better and my fever went away. I will ask my oncologist today about a shot. I do not know why they gave my IV antibiotics instead of a neulasta or neuprogen shot.
I had my hair buzzed today and am now wearing wig. I do not want to take it off.
I have tried Avitar, but it keeps rejecting my picture. It says it is too many pixels. I do not know how to resize. Can anyone help?
Catch you all later.

Anonymous

Viddie - if you have any photo editing software, try resizing the photo to 80 pixels first. I'll also PM you with my email address. You can send the picture to me and I'll resize it for you.

meliaanne

Hi All,
2nd a/c yesterday, went smoothly. My dear son in law sent me a portable dvd player and I watched Prairie Home Companion, which I thoroughly enjoyed. It is a good solution for me, as I find it harder to concentrate on reading, and it was light and funny. And Meryl Streep is always a treat.

So I am at work and doing ok. I get off at 3 and will rest when I get home. I like having to work as it keeps my mind occupied; I tend to really get scared when I think too much about the future. I have to work as my husband was out of work for a couple of months and hates his new job, plus I earn twice what he does and we are trying to save for retirement. I am 58 and he is 62, and we are tired of working. We have both worked since we were teenagers and would like a break.

Re the hair; it was the hardest thing for me to handle. The week when it was 1/4 inch and i wore the wig to work was miserable, so itchy. But once the hair was gone (started out in clumps 14 days after the first a/c) it has been much more comfortable. I find it upsetting to see my bald head, but guess I just have to get used to it. I switch to hats when I get home since you can't cook with a synthetic wig. Plus I am ready for sweats and a cozy hat by then. My eyebrows haven't come out yet ... but I assume they will at least thin.

Stay strong everyone. This isn't easy, but we can do it!

Thanks for the questions about how I did. This is a lonely battle sometimes.

Melia