Starting chemo Sept 05

sewmanythings

Hi there everyone, I have just come on line since I last posted - Thank you to all who have given me wondeful advise. My Hubby will come with me to my meeting with the onco and will write everything down for me as advised. My op went well - the scare are healing well. I have very tender breast since I had it all drained on Friday - guess the fluid was a cushion! My upper arm does feel tender but not as bad as I expected from all that i have read. I own a Quilt shop so I think all the cutting of Fabric has helped! I will let you all know on Tuesday what I have been advised.Once again I have learnt so much from all of you. Lots and love and you are all in my preyers.I will keep reading all your messages.
Monique

susan_02143

Oh ConstanceDiane,

I am so sorry that you had such a difficult day. For me, days 4-6 are the worst. I have the least amount of energy and the most nausea. Yesterday, I even needed an extra Compazine to keep it all together. Energy in the morning is best, and then during the afternoon I sag a lot.

Sounds a little like your routine right now. If a friend has offered a play date for your 4-year old, tomorrow afternoon might be the perfect time to accept. Let's you have a rest while she has fun.

Be patient with yourself. Your body has just been given a HUGE shock. [And this isn't depressing, this is our lives. Vent away my friend!]

*susan*

prayer

Hey Marg...
My name is Penelope...go by Penny as well. I am a Christian myself and feel blessed you have put me in your prayers. Thanks so much. It is very comforting!

Susan..I also have the sore thing, or at least I did. I have had cold sores ever since I was small child and the chemo made them come out with a vengence. I do actually have a perscription for Valtrax, which is wonderful. If you continue to have a problem you should really consider it. If you take just one pill as soon as you feel the tingle of it developing you don't develop the cold sore. Although they do tell you to take them for 10 days I have found that if I just take them 1 or 2 that is enough and often if I take just 1 right when I feel it coming on they never develop. I'm sure it works the same way for vaginal sores. Although I really do wish you had some magic potatoes too.

Well all off to church. Hope all of you find some comfort today even if it is in a small way and I will says prayers for all of you today. This board has saved me in many ways. Love to all.
Penny

tornadogirl

Hi all! My back is better today (after a day of valium and bed) but I still have remnants of those muscle spasms. i wish i knew what they were caused by. Have an appt with my primary Dr next Tues maybe he will have an idea.

And the folks on neupogen are usually on Dose Dense chemo. This is where they give you the same amount of chemo but give it every two weeks instead of every three weeks. Since the body does not have time to recover for the next dose, they have to raise your WBC count up artificially with shots of growth factor in order to make you able to recieve the next dose.

CD, Day 5 was terrible for me too. The drugs had worn off, i was tired and could barely get out of bed. It felt like a ' Delayed reaction" to the chemo but i really believe it was the drugs wearing off and the cells that were killed trying to escape the body. What helped me on day 5 was Pepcid AC and keeping soft foods in my stomach at all times. That is all you need, tiredness AND stomach delicacy. So take care of your stomach and try and just rest. My husband wondered why I could not go to the grocery store but really I could NOT drive that day anywhere. i stayed close to bed and couch.

Day 6 or 7 you will feel better but dont overdo it Like I did thinking you are ok.

I learned I have to cut the stuff I do in half. That is all i can really handle. And do it all in S-L-O-W motion.

I even feel mentally retarded sometimes. But heck, go with the feeling! I use to work with DD adults and they had the most fun of any folks i met.

my new motto, S-l-O-W DOWN, WAY DOWN AND CARE FOR MYSELF. i am trying to do "one" task instead of 7 per day. This is hard for me but i must do it.

Susan i am glad you are feeling better. Demand the same amount of anti-nausea drugs in your IV next time. If they were working, why did they change them? I always ask amounts of everything i am recieving. After all, it is our precious bodies they are dosing.

marg1

Penny, was that you in the Her2+ discussion board. I too am Her2+ and a little in the freak out mode about it. I sometimes get really mad that I had to be her2+. Please go buy this book -- Grace for each hour by Mary J Nelson. It really helps me out. Everytime I read a chapter it was just what I needed to fill my heart with peace. Since you are a christian woman like me you will appreciate it.
Just today I read

Faith instead of fear (John 6-18-19)
Health instead of sickness (Psalm 30:2)
Hope instead of despair (Jeremiah 29:11)
Peace instead of worry (Philippians 4:6-7)
Provision instead of lack (Philippians 4:19)

I tell you Penny, I dont think I would remain as positive without this book.

Lets worry about Her2+ until after chemo. Lets get through these next 6 months for now.

Marg

AussieMum

Marg,
Thanks for the book suggestion to Penny - will also check out the book myself.
AussieMum

prayer

Hey marg,
I have heard of that book too. Was thinking about going down and getting it. I will for sure now. I have to admit my faith has been shaken. I keep wondering what the lesson is that God wants me to learn but then remember that I may never know, or the lesson might not even be for me. I guess trust is really my issue.

Yea, the her2+ thing scares the death out of me as well. My sister is a lab tech and runs all those tests. She told me that her2+ is not something you can pass to your kids so I am at least grateful for that. I figure if I can just get the chemo out of the way then I can hunt down herceptin. I tell you that I went and read the her2 support web site and it just freaked me out. Don't think I will ever go back to it.

I prayed for all of you all today that you have some peace from this disease and that God guides the hands of your doctors. Hope all of you that have treatments this week come through it as easily as possible.
Love to you all.
Penny

foxxf

Hi everyone,

I have been doing o.k, Extreemly tired only able to stay awake for up to 2 hrs at a time (day 4) getting better though. A little fuzzy also so I havn't been able to focus enough to post much.

The nausia meds are working better, like Aussiemum I Have Navoban,Dexmethesone and maxalon. I asked about Emend and he said that is their top shelf stuff and will use that as a last resort.

Eating every 2hrs is important and I have never peed so much in my life....

Feeling much better today able to stay awake a bit longer
thanks for the well wishes post soon
Nicole

Constantlyhope-2005Aug10

Hi to all my Sept. Sisters,
I am feeling so much better. Bubbles(love your name) , I'm so glad you're feeling better--that must have been quite a scare, you were right, day 5 was the worst. I was shaky, unable to concentrate, at the point of tears all day, just so weak. To have attempted to drive a car would have been a crime. Toward the evening though, I just started feeling better, more like myself instead of a emotionally adrift chemo- zombie. So why do we feel bad? Is it the chemo or the other drugs? I am fighting so hard not to give in, not to let the feelings of lethargy take over, not to crawl in bed and stay. Yesterday I didn't fight it, but I reveled in the care and love of my husband and the good soup he made. So I guess day 4 and 5 are my Waterloo days and I must prepare next week.

Marg, I ordered the book you mentioned. My faith has often been very important to me, but now I find I can't pray for myself. I can pray for my family, for others but I feel so futile praying for myself. I finally read "When Bad Things Happen To Good People" a few weeks ago and it confused me quite a bit. On the other hand, I have an aunt who gave me a copy of Dodie Osteen's book about curing her cancer thru prayer. Dodie says cancer is of the "devil"; Kushner says God can't prevent bad things, but he can comfort us and allow others to. I hope this isn't offensive to many--I'm just trying to sort it out for myself.

I hope all of you are coping with the hair loss thing ok. I'm still sitting here being the Queen of Denial although I do have an app't to get it cut tomorrow. I just know I'll break down in tears and I don't want to share such an intimate moment in such a public place. My head is feeling funny though--just more tender. I know I have to do something--not sure if I trust my girls to do it. Because it's been long for such a long time, maybe I do need to see it short so I can adjust for the week or so I have to adjust.
How long do y'all continue to eat every 2 hours? When will water taste alright again?
Love to all
CD

susan_02143

Hi all,

It is so good to hear that so many of you are coming out on the other side of your treatment. I am sitting just below that magic 100.4 that sends me to the hospital, the same pattern as the last treatment.

I will lay low today and hope that this fever doesn't spike. Nothing I want less than to head to the emergency room. On a higher note, I have a stream of visitors coming today which should lift my spirits. [I have some wonderful friends!] And some friends pitched in and have arranged for a cleaning crew to come to my house and CLEAN!!!

I did go out yesterday in all my bald beauty, and not everyone is ready for this look! Heck, I am not ready for this look but it was too hot and humid to wear a hat. Thank goodness that Boston has so many 'types' of people. In actual fact, I don't stand out that much [and that is saying something!]

When I am feeling stronger I will respond to all your postings.... this community we are creating is a life-line. Thank you all.....

*susan*
Day 5, Round 2, Immune Suppressed Day

txred9876

Susan... I hope you are taking precautions with a surgical mask when going out! You need to make sure you do not get sick! That is the ONLY reason I am staying home.
Tina

prayer

Constance,

Don't worry about offending anyone here. We all get through in our own way. I personally believe this is the devil. I can't imagine any other reason why I would be the third generation to possibly leave my children. I understand not being able to pray for yourself. I often have this problem that is why I gave myself the screen name I did...to challenge myself. I think many women ignore their own needs in order to take care of others...doesn't this go hand in hand with the prayer thing? My faith has been shaken to, but I know God hears me enven when I am not praying and that gives me some comfort. I was not raised in the church nor was I taught about God as a child but stumbled onto it through my children. I also stumbled on to finding this cancer. I think God had a hand in both and I wasn't praying then...only evidence to support my statement. Keep thinking and searching about it Constance...He is still hearing you! I believe that.



Susan...hope your fever stays down. I will be thinking of you today.



Well all it is 7:00am here in Ca and I need to track down some of my wayward students. Got to catch them when their sleepy before they disappear for the day....the hunt is on!

carolrn

Susan, sorry you're feeling bad. I am beginning to feel human again. almost a week since chemo. slept for the better part of the weekend. please don't push yourself.
the rest of you ladies good morning and hope your week goes well. if anyone finds those elusive magic potatoes please buy a bushel and ship to all of us. God bless each of you. carol

jlpd

Well Day 5 is definitely not a day to come back to work. I'm exhausted (an AC). I may call it quits here shortly and go home... I'm on a break between classes and I'm going to put my head down for a little....we'll see how I feel shortly. I'm not sure if it is due to crashing from the Decadron or what...yesterday I was tired, but not like this. Oh, well...one day at a time. Hey, what is everyone using for constipation???Softners or laxatives...that just makes me feel worse! As long as I eat CONTINUALLY, I'm not nauseated...Drinking is hard, nothing tastes good...I hope day 6 will be a turn around!!

tinkermax

I used milk of magnesia for constipation and it worked a treat.

Hope this helps

Maxine

twinmom99

Hello, I've been lurking and thought it was time to join in!

My name is Suzi, I'm 43, mom to 5 year old twins and live in Portland Oregon. Like most of you, this hit me like a sledgehammer (even though mom and grandma died of BC, I never expected me to get it). I live a very healthy life style, eat organically and work out tons (I used to mountain bike race before I had twins) and I cycle about 3000 miles a year (insane I know, lol). Well all that did me a load of good, LOL -- I'll still never give up any of it although I've cut back on cycling and am mostly going to the gym. I'm finding excersice very theraputic through this...even if it's just a hike in the woods or doing hills on the treadmill for 45 minutes.

I was diagnosed with BC 8/22/05, the same day the lump was taken out. Lymph nodes were clean, lump was 1.8 cm, e/r-, p/r-, grade 3, stage 1. I had a lumpectomy and a week later, the port put in.

Well it's been quite the journey....I am doing dose dense chemo (4 a/c, 4 taxol) and had my first treatmant one week ago. And I'm doing really well...absolutely no naseau (I take compazine when I feel it barely coming on, I've taken only 2 of them). The head is definitely tingling and I feel my hair is ready to "disconnect". I bought a saucy Rachel Welch wig that is very close to my own style and plan on wearing it sometimes and scarve at other times.

Yesterday I rode my bike 20 miles and plan on going to the gym today for a workout (nothing with the arms though, my surgery was right in my armit and I'm worried about lymphedema setting in). I'm not try to brag about my workouts - I'm hoping to motivate people to exercise -- it's really helping me a lot....especially with sleep issues and bathroom issues. And I'm drinking a ton of water -- i don't want the a/c to settle in my kidneys or bladder....but I have my vices, lol -- I'm a coffee addict that needs 2-3 cups a day to get going and the oncologist said no problem, just drink more water.

The one thing that I'm getting even with all the water is "dry mouth" -- anyone else having this?? I must wake up 8 times in the night to sip water. I might call the nurse today and see what she suggests.

I'm glad I found you ladies! You are such an inspiration and I love reading all the real world advice.

tornadogirl

Hey there twinmom! A woman in my own city! Lets compare notes! Give me your e-mail if you want to.

tornadogirl

Anyone on this board is welcome to e-mail me too. Any support I can offer will distract me from my own "journey"! And help all....a win win.

susan_02143

Yea!!! Fever is gone!!!!

Welcome TwinMom. [another one of these bittersweet welcomes.] Sounds like excersise is something that works nicely for you. My oncologist and surgeon were very clear that changing the level of physical activity during treatment is not advisable however. They want their patients to maintain their current 'normal' not create a new one. I have found doing a 2 mile walk a day is perfect, but I have never imagined bicycling 3000 miles a year!!!!

A friend's husband rode in the LiveStrong race in Portland this weekend, raising over $2000 for cancer research in his wife's honor. Haven't had a report on how the race went yet, but I do hope that the weather was cool and crisp for that ride.

I have found Biotene toothpaste is good for the dry mouth syndrome.

Think a small nap is in my future....

*susan*

Constantlyhope-2005Aug10

Hi there everyone,
Suzi, sorry you're here, but it's good to hear such a positive attitude. I'm trying to keep exercising, because it is such a stress relief, plus I'm enrolled in a JohnsHopkins Nurses' Research Project on the value of exercise in fighting chemo-related fatigue. They ask me to monitor my steps (pedometer) and walk at least 1/2 hr 5x weekly. I've also been trying to ride a recumbent bike for 30min 4 or 5 x weekly. I'm aware I'm quite minor league though compared to you! This weekend I went to the dark side as far as chemo goes though and nothing could have dragged me off a chair for about 30 hours. Yet today I woke up feeling so much better and the first thing I wanted to do after coffee and something for my stomach was ride my bike. I rode 10 miles in 30 min and it felt great. I'm not athletic or fit or anything just an older middle-aged woman fighting for all I can to make it! And I still have so many fears that I'll be too tired to keep it up and start gaining weight.

Jlpd, I know what you mean about day 5--it was the absolute worst for me so far. I've been eating flax seeds for constipation. Usually I have about 2 tbsp daily.

Susan, I'm so sorry you have to fight this infection thing each time. It sounds like you have such a great support system though; how wonderful to have friends that will come in and clean and cheer you up. We've moved so many times during our marriage--I don't even know anyone in my little town...but I have a great family and they are keeping my spirits up.

Prayer, your post made me cry. Most everything makes me cry lately, but thanks for your words of wisdom. It's so difficult to make sense of everything; I want so much to believe that everything will be okay for all of us. I'm hoping Marg's book will help me in this fight.

The Queen of Denial? No longer! I went to a salon and got about 8 inches cut off today, so now I have a nice little bob. The woman who cut it was wonderful and suggested I come back in another week and have it cut more. I did cry a lot and it was hard. My eyes look bigger (redder, too) and it definitely emphasises a little unsightly waddle in my throat that I never noticed. That was a big step for me. I promptly went for a Starbucks grande breve with an extra shot after the shock. My husband promised champagne, but I'm not ready for it yet and I can't remember when the onc said I could imbibe again.

On the dark side, I have been missing my mother who died a week after my first surgery this summer. I was her caretaker and she had dementia/ conjestive heart failure/ strokes, but I know she would have comforted me. You know, I wish I could just sense her spirit or something, maybe see a butterfly and know she's around. Anything...

You'd think I was still on steroids the way I'm talking, but I find all of you such a support and I need to keep in touch. Maybe I shouldn't have asked for that extra shot of espresso?
Love and good and happy memories to all,
CD

marg1

Hi everyone, Marg here



Susan -- Yeah!!!! I am glad you are okay. Congrats on the bald outing. I had mine on Sat. I didn't realize how white my scalp was until I looked in the mirror. I am a brownie mexican and it is quite a contrast let me tell you. I sat in the sun for about 10 min with SPF 50 yesterday, to try and get that part of my body to look mexican too!!!!!



I am enjoying the shaved head though. I can handle the 0.5cm hair comming out more than the long strands of hair much better. I have played with all hats and bandanas all weekend. I went to work today with a bandana and a cap and faced my co-workers -- they were all great.



They talked of a hat party for me, but since I have so many I did'nt think I needed one. Maybe I will change my mind later but I liked the idea for some of you ladies.





Penny and CD -- Dont be afraid to pray for yourself. Right now it is all about you. When I am down I think of things that could be worse. I could have been killed in car accident and not had anytime with my children at all. At least now I have a chance to get better. I could be talking my 5 year to MD Anderson to treat her for cancer. My husband and children could have been killed in a car accident and I would be left behind. Those things could be worse. Her2 or not, I still have a chance to spend time with the girls and my family. So now I hug them a little tighter, blow off the household hold chores and read them books instead. I am so selfish about my time. I say no to things that I dont want to do when usually I was "Well okay, I'll go" or "Sure I will take that monster project on" (even though I didn't really want to.) This is my time. Our Time!!!!!!!



Marg

susan_02143

Marg,

I don't know why, but you put a smile on my face. My head is so white too, but I am a total WASP; I glow in the dark I am so white! Even as I go bald, my husband is jealous of my hair per inch count. He has suggested switching, but I am not falling for any of that.

But to be serious, in fact, you are right. When I was diagnosed my lovely 19-year old looked at me and said "I know I should be devastated, but this isn't the worst thing that has happened to us." And she is right. The worst thing happened 10 years ago, and we still reel from the tragedy of that moment.

At least we [meaning cancer patients] have been given the opportunity to fight back. For this I am grateful each and every day.

*susan*

susan_02143

ConstanceDiane,

You will have to hand in the Denial Tiara at the front desk, there is a line waiting to wear it. The sadness of taking this huge step is understandable, isn't it? My hairdresser offered to cut mine after hours, but then she couldn't due to babysitters. Everyone at the salon was kind and supportive. [Unexpected gifts!]

This study is very interesting. I had read early reports which is why I added my daily walk to my regimen, both for chemo and radiation fatigue. How many miles does this half hour work out to? And bicycling? You guys amaze me. I live at the top of a very big hill, and that scares me since I would need to get home.

And finally, here is a virtual hug {{{{{}}}}}. It doesn't matter what age we are, there are times when we just want our Moms. Just this weekend, I phoned, needing my "mommy", and my mom is not the warm and fuzzy type.

*susan*

go for that extra shot! you deserve it!

susan_02143

Whoops. This is Day 6 for me which has been the lowest one during both rounds. Marking the calendar now so I don't forget that it is coming during the next round.

*susan*

tornadogirl

Day 6 was the worst for me too. I felt down mentally and physically. hang in there, knowing that day will be bad could help you plan to have a cooler near the bedroom full of drinks and yogurt and a tv, etc. Sorry we all have to go thru this. it is a drag.

txred9876

Well today is day 12 and in the shower I had a lot of hair falling out....wonder if I can keep it a few more days!

Tina

Calico

Hi everybody,
I'll start tomorrow!!!
Dose dense AC and Taxol.
I started in the October thread as well, can't get enough of "it" (the positive spirits around here )
Hope all goes well with you all, pretty motivating to read here.

God Bless

Teresa44

Hello everyone, I am also a newbie on this board. I was dx with breast cancer on Sept. 15, 2004 so I know pretty much what most of you are experiencing. My faith in God and prayer is what got me through this along with a wonderful family. The cancer I had was a hormone negative. It was 6.5centimeters which is very large. It was a fast growing cancer that came out of nowhere. It does not run in my family, I breast fed 3 kids. I always had the cystic lumps so I was already getting mamograms about every 6 months. I knew that there were 2 cysts we were watching in my right breast but the cancer was in an area we were not even concerned with. I had chemo, surgery, chemo and radiation. After my first 3 chemo treatments, I had an ultrasound and my 6.5 lump had just dissolved and disappeared. My doctor just knew that I would have multiple positive nodes, but after the masectomy my surgeon only removed 2 nodes and they were negative. I really and truly believe that God healed me.

Teresa44

Hello Ladies, I am a newbie on this board so I am just trying to figure out how to post on here.I was dx with b/c on 9-15-04. My tumor was 6.5c. I had chemo, surgery, chemo, and then radiation. After the first 3 chemo treatments, the tumor had dissolved and disappeared. My surgeon took out only 2 nodes which were both negative. My cancer was hormone negative. It was a very aggressive, fast growing cancer that came out of nowhere. I now have about an inch of hair on my head but I sure wish it would grow just a little bit faster. I now have to see my doctor every 3 months. Yeah!!! Me and my doctor both know who my real healer is. God!!! My faith in God and prayer has seen me through the worst of my treatments.

susan_02143

Barb, yes. I am now in total agreement. Day 6 is the pitts! Chanting 'two down' helped!

Tina, you have a few more days yet. Mine actually started falling out at day 16. Guess this is another individual thing since some friends started on day 13, while others like Peg kept it much longer.

Calico, ::checking calendar::, ummmmmm.... I think you are a September Sister. Will think of you often tomorrow. Drink as much liquid as you can before the infusion, eat something for breakfast, and if the center doesn't provide snacks, take a little something to nibble on. Needless to say, we will be here for you....

*susan*