Starting chemo Sept 05

marg1

Hi everyone, Marg here. Well I went to Walmart early this morning and I was followed around by this woman for a few isles. She finally caught up to me and told me she was a 10 year BC survivor (it is official -- everyone can tell I am a cancer patient) and invited me to her breast cancer support group. She said there are only 5 of them that meet once a month. I did not even know we had one. I had intended to start one once I went through the whole "experience". I have lots of connections in the medical community down her being an RN for 12 years in this little town and my big mouth does help. We had a great chat and cried and embraced each other for a long time. She's great and I feel empowered to reach out to all of the other women in this small town and help them. Either to get a wig, a shave (ha ha) or turn them on to great books and websites like these. I am also an amateur photographer. (see my webpage at www.betterphoto.com click on galleries, then premium galleries, look for the alphabet lined across the page, click on the letter P) and look for Margaret Perez then click on view gallery. I am the one with the Bilateral Babe button on!!!!! My husband gave me that button. He is a wonderful man. I have been photographing all my stages. (not on the web page yet) I did these cool shots of my breasts prior to my surgery (I was size DD) those you won't find on the website ( well at least not this one - -lol) I did shots right after surgery with the JP's (drainage tubes) etc... and did the shaving party last night. I plan to put them in a scrapbook for all those women that will go ahead of me with their dx. I am so pumped about this. I almost feel that I was given BC so that I could provide education, spiritual guidance and a shoudler to lean on to all those diagnosed with this disease.



Tina -- Have you tried MD Anderson -- you live so close (Austin TX). You should try it there -- they may have a program for you. I live 350 miles from MD Anderson and I dont care if I have to walk there -- I love it there -- Everyone is top dog!!!! You and I have the almost exact BC, I also ER+, PR+ Her2 + and 8/9 on the bloom scale. We have a particular more aggressive breast cancer that requires us to fight that much harder. I will pray for you TX sister as I do for all of us in this chemo group. Marg

marg1

Hey prayer -- how are you doing with the hair loss? I hope you are okay.

Marg

susan_02143

I thought getting does dense meant I had an aggressive oncologist! :-0

Tina,

Getting SID would be such a help, and doesn't that make you eligible for all kinds of other services as well? Let us all send best wishes that this comes through for you the first time.

*susan*

prayer

Marg,
had a really hard time with it yesterday but today I am ok. Haven't shaved my head yet. I have a lot of hair so even though I am loosing it by the handfuls it isn't noticable to others yet. I will probably let my kids cut it off in the next couple of days. My daughter who is turning 4 thinks this is a great idea. Glad someone does anyway.
I ,like you, also took picutres of myself before and after every stage of recon. I did it because when I was lookin gfor before and after photos of mastectomies I saw the scariest picture. I was absolutely amazed when I did not have one single bruise after my surgery and thought I need to take pictures of this. I have 3 older sisters and wanted to be able to show them what it was like for me instead of looking on the internet. My surgery even though a bilateral was really no big deal. Loosing my hair has been much harder.

cazza61

Hi,
the only medication Im on is anti nausia tablets novaban injection on the day of chemo and novaban tablets wich are supposed to last 24 hours i take them for 2 days after chemo I also have maxalon wich is another anti nausia tablet if Im feeling queezy take 1 1/2 hour before food and 1 1/2 hour before bed.
Had to visit the hospital yesterday because we dont have doctors on duty here on saturday.I couldnt stop going to the loo,they tested my urine and found I had a urinary tract infection so am on meds for that now.
I slept all night last night which felt great, 5 days after 2nd round of a/c still a bit queezy but can drink coffee today "YES" coffee.
Thanks to all who replied to my posts
Love always Carol

marg1

Hang in there prayer. I had a hard time with it too but I just could not handle the handfuls of hair anymore. Today I am off with my husband for a Harley ride and Harley event and I am going bald. I am super nervous. I might just slip a bandana in my pocket in case I chicken out. I wore a bandana and cap to Walmart this morning. I figure I will fit in with all those rough harley chicks. It will be fine. You will see that once its off it almost as a huge weight off your shoulders. You wont have to deal with it anymore and the whole trauma is finally over. I did on Friday so that I could have the weekend to "deal" with it. It didnt take me long. I did however advise you to have plenty of hats, scarfs and a wig ready. It makes the transition better and gives us something to whip on your head if you do care for the look. I bought a long hair wig and a short one. My girls and I played with them all day today. Makes me feel better. My husband is excited he says he get to have sex with 3 different women. The long hair one, the short hair one and his fav the bald one. What a guy?!!!! I think??? LOL The girls walk by me and rub on my head and giggle all the time. I am praying so hard for you. I wish I could give you a big hug buddy. Stay strong and positive. Marg

What is your real name if you dont mind-- it sounds funny when ask God for a special prayer for prayer.

marg1

How do we get a picture posted by our names -- does anyone know. Thanks Marg

carolrn

hi carol, I understand what your saying about body feeling twitchy at night. seems to help if I take compazine and two tylenol extra strenght. no one has offered me an ativan but seriously considering asking for something.right now my left hip and leg are aching so bad from the neulastia that I am walking the floors. anyway you aren't crazy all of our bodys are different and we all respond in different ways to stress and medications

carolrn

marg, your photos are awesome. you are very talented. and what beautiful subjects. are the children yours? carol

txred9876

Susan-
I sure hope it comes through the first time...you can only rely on everyone else for so long then it gets old!

Marg-
I tried MD Anderson and they told me that unless my current treatment options were not working that they would not take me as a patient. (personally then....I DONT WANT to have to go for that very reason...I want it to work the FIRST time!)
Tina

carolrn

question about taste buds guys on A/C. with the taxotere nothing has a taste eccept very salty or sweet.is it the same with A/C? ya'll sound like food tastes good. if so I will be so glad to start A/C.right now I just eat because I know I have to.

susan_02143

Carol,

Hang in there! Sounds like you are coming out the other side. Any chance that you can get Emend or Zofran for nausea next time?

Of course, I don't understand the AUS system, but it sounds as though you could use a more recent generation of drug. So glad they found that infection. Like you need anything else to deal with!

Take care,

*susan*
a decadron-inspired posting

susan_02143

Marg,

What beautiful pictures you have taken! You are right, beautiful hair, beautiful children, and what a joy your photographs show. Thank you so much for sharing this with us.

I am so inspired by your response to this disease. Your outlook is far more spiritual and full of understanding than mine. It sounds as though you have come to some place of calm. So glad you found a support group, and your 'hair' place.

You are amazing!

*susan*
a decadron-inspired posting

susan_02143

Carol,

If the bone pain is bad, again, there are things they can give you. I rely on the Ativan to give me 7 hours of sleep [with at least one trip to the bathroom, of course!]

Fell asleep today for a two-hour nap after waves of nausea hit my body, and I am feeling much much much better.

As to flavor, things do taste different on the A/C. Since I can't use lemon, vinegar or any of my regular acid spicings, I am left with garlic and salt which both taste great to me right now. I am using lots of herbs as well to flavor my food. Other things I can taste include yogurt, peaches, potatoes, cheese, and eggs. Odd combination, but at least I am eating!

Hope this is helpful,

*susan*
a decadron-inspired posting

susan_02143

Tina,

Hear, hear to the first time! Though it sure would be nice if you could use an MD Anderson surgeon. Crossing fingers about the Social Security though. What a relief that would be.

*susan*
a decadron-inspired posting

susan_02143

Quote:

---

I have 3 older sisters and wanted to be able to show them what it was like for me instead of looking on the internet. My surgery even though a bilateral was really no big deal. Loosing my hair has been much harder.

---

Prayer,

What a kind thought you had for your sisters. I see how hard the hair is for you, and only wish there were some magic potatoes I could send your way so you didn't have to face this.

Take strength in Marg's postings....

*susan*
a decadron-inspired posting

monkey9cats

Good morning or evening ladies! Yesterday I was wide awake at 2am. This morning it was 1am. The good thing is its the weekend and I can take a nap.

Marg - Your family is BEAUTIFUL!!!! What wonderful pictures on that website! You can download a picture by going to your personal page (the one with your passwords). There's a spot there that shows where you can download. They call it "avatar". The picture of one of my cats was pretty big & I had to make it alot smaller to upload because they have a size limit but it will tell you that.

Hope everyone is doing OK. Yesterday I was reviewing my last treatment. I think I was taking one of my pills incorrectly LOL. The decatron says to take with food or milk & I don't recall doing that. I think each treatment we'll figure things out.

I was so mad the other day. Went grocery shopping and bought everything except the chocolate cake I had a craving for! I can't quit eating!!! I bought a smoothie machine on Ebay - got it Friday and I couldn't get it to work. I wanted a banana smoothie SO BAD!!! So I got my antique blender out plugged it in & it burnt up!!! Soooo I got dressed and went up to Walmart (had to have that smoothie!!) and spent almost $40.00 on a blender/smoothie machine. Made my smoothie then started tinkering with the one that didn't work and guess what it worked!!! Now I have 2 smoothie machines!!! Shows you what "food cravings" can do!!!

Hope everyone has a super Sunday!

Cheryl (with head still itchy)

tornadogirl

Landed in the ER last night with weird symptoms. Around 3pm, hips started hurting and went to my lower back. I had energy being day 9 out from AC and had worked most of the day buying paint, getting new locks, blinds, etc for one of my rentals and bringing Dad to his Dr. (he really wanted to see me)



Anyhow my hips ached, then back, around 3pm (figured it was neupogen) then back started spasming uncontrollably. Would not stop. Felt like it was in my esophagus too. The spasms.



Since i never had anything like it and it was getting worse and so bad i could hardly talk or breathe, at 9pm i had my H drive me to the ER which is 10 min away.



They kept me there for 3 hours taking blood and did not know what was wrong. Ended up giving me IV Valium to relax the muscles. Started to get better but was still doing it so they sent me home with Vicoden and Valium.



Took 10 MG Valium and a vicoden that night and slept thru the night. Next morning spasms continued but not as bad.



I took Valium every 4 hours and stayed in bed on a heating pad today. Tonight the spasms are nearly gone but i am still being careful.



Wow, if i knew what brought these on maybe i could have prevented them. Maybe i over did it going to home depot, buying paint, etc. Who knows.



Just take care of yourselves so this does not happen to you. I am going to baby myself from now on and not lift paint or other things.

AussieMum

Susan, thanks so much for the follow up.

Roche has 11 breast cancer trials operating at the moment in Australia. Many are closed for registration, and I don't fit all the criteria for the others. Still, the signatures for my petition are rolling in.

Second cycle FEC tomorrow - provided my white cells and nutraphils are up enough. Too low friday. I feel great, but the blood test is what they go by.

Well, I say I feel great except for mouth ulcers began today. Any suggestions? They are quite painful. I thought I had got away without them - not to be!

AussiMum

susan_02143

Cheryl,

You have a lot of determination! [What did you put in your smoothie? I am enjoying peach with yougurt right now.] At least when your daughter arrives you can each have a different flavored drink. Let's hope she shares your smoothie-passion.

My hair is going quickly now. As I sit here at my computer, I have a cat hair roller, the type with tape, and I roll it across my head. The tape fills very quickly, and I have to strip it off to get to a fresh layer. I suspect I am quite a sight while I do this!

*susan*

susan_02143

Barb,

Wow! This sounds so scary! I hope that you are 100% today. Thanks for the reminder that we can't push ourselves as hard as we usually do.

*susan*

susan_02143

AussiMom,

I use Biotene Toothpaste after every meal trying to keep mouth sores away. I did have one at the back of my throat during the last round which hasn't returned. My Nurse suggested garggling with salt water, which I assured her would make me vomit!

I also have vaginal sores [oh how yucky is that!] which occurs in 1 in 10,000 chemo patients. I am using baby wipes to reduce the chance of those getting worse.

My Nurse said that she would prescribe Valtrex if I did get substantial mouth sores. I guess this is actually a herpes virus that gets activated by all the chemo.

Not much dignity to these treatments, eh?

*susan*

tinkermax

Hi Aussiemum

I have heard gargling with salt and water, can help with mouth ulcers (every, couple of hours). Hope this helps..

I was also told to use a non-alcohol mouth wash every couple of hours whilst going through chemo. Another post I read said Arm and Hammer toothpaste with bicarbonate of Soda is good at preventing mouth ulcers. Maybe this will prevent you getting any further mouth ulcers.

good luck

Maxine

tinkermax

Susan

So sorry to hear about your sores....here's hoping they get better quickly, you have enough to deal with without that.

Take care

Maxine

tinkermax

Marg

You are a beautiful lady, with a beautiful family.

Thank you for sharing your photos with us.

By the way, how old are you? I'm 41

Take care of yourself, and have a good weekend.

Maxine

marg1

Hi everyone, Marg here

Susan -- As soon as I read your post I started using baby wipes on the V -- just in case. I was told by my onc nurse to rinse my mouth with baking soda and water every 2 hours or so. What I did was fill a empty bottled water container and filled it with the mix and leave on the kitchen counter and every time I eat or go to the kitchen (which is a lot) I rinse. I do it until the water bottle is empty. Not one sore yet.

Maxine -- I am 38 and will be 39 this Dec.

Carol -- Yes those are my babies. age 5 (Maya) and age 8 (Miranda)

Bubbles -- I glad to hear that you are better. You know I was never given Decadron or Neupogen. I was given Zofran for nausea to take twice a day for 3 days straight after my first AC tx. I wonder why so many of you are getting it. I dont experience any of what a lot of you are going through with that stuff. I wonder why you all would get it and I would'nt?

PS -- Went bald last night to that Harley event and a guy walked up and asked if I lost a bet (due to the bald head) and I told him -- yeah to cancer tx's. He was speechless and I felt horrible after I said it. I caved -- bought a do rag at the Harley store and put it on. Oh well. I am off to church -- will pray for all of us. Marg

marg1

cheryl -- thanks for the info on the picture. I am going to upload me bald. It is who am for now. Marg

txred9876

Susan.....

It never fails that you will say something to get us laughing....it sure helps. I can just see you sitting there rolling hair off your head! Maybe I will be one of the lucky ones ...not really much hair coming out...day 11 for me. Although I have TONS of hair..so maybe its all over my pillow from last night (did not look..LOL).

Bubbles..
Sorry to hear about your back that is no fun at all...Since I am confined to the house I am not doing all that much so will not get into the overdoing stage.

Cheryl....
Glad you got your smoothie! Its strange I have had some REALLY wierd cravings...hell..I am having most of the same crap as when I was pregnant...cravings...nausea...vomiting...fatigue..hot flashes...omg...it sucks...but we will ALL get through this!

I am going to leave the house and make my SO take me for a drive. I figure I should be ok as long as I do not get out anywhere....being in the house is about to DRIVE ME NUTS! I feel fine other then my normal allergy issues.

Tina

I am using regular old toothpaste but brush after eating anything. I think I am brushing 10 times a day! There is supposed to be a mouth wash that can be prescribed for mouth sores.

Msjeckylahyde

I hope you have an oncologist by now. Surely there are some in your area.I like "turning your fear into curiosity". How did the tram flap and symmetry go? I can do that or double mastectomy with expander implants. Deb

Constantlyhope-2005Aug10

Is this how I'm supposed to feel? I'm on day 5 of myfirst ac treatment. Day 1 was horrible, but I assumed it was just nerves or something. Day 2 and 3 were fine as long as I followed Susan's advice and ate protein every 2 hours.I actually felt good. But yesterday was miserable. My husband and older daughter left for an Orioles game, so I was left with my 4 year old. The morning was fine, but by the afternoon, I was exhausted, depressed, felt at death's door, sore all over and fighting nausea. It hurt to talk as my mouth was feeling sore (on day 4, already?). When my husband called me, I just had a meltdown. Tears, everything. My little girl just wanted to play all day or read. But my mouth hurt to read and I was hopeless at any expression or whatever. I felt like I was already dead watching the world thru cotton or something. I finally had to succomb to taking the ativan, but I was afraid it would make me fall asleep before my husband got home. It didn't and we all survived. Still I feel like such a loser. And my husband feels perhaps guilty for going to the game, but both my daughter and he needed to get out.

And I don't know why I felt so bad. Coming down off chemo drugs? Today is day 5 and I still feel so down, as if I don't want to do anything, like my head is wrapped in gauze and I can't break out.

And despite mouthwashing, my mouth is sore. No sores, but it's sore. I feel like I'm giving in or giving up and I so don't want to do it. My concentration is gone. I should just get up and go for a walk, but I'm so tired and today I have more help with my youngest.

Sorry to be so depressing. It's great to hear all the stories of victory, of keeping your spirits up no matter what. And we all have so much going on, don't we? I'm thinking of all of you, September Sisters, and hoping today is good and tomorrow better and that the treatments are working!