Starting chemo Sept 05

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited October 2005
    Lisa,

    I don't think I welcomed you properly when you joined us [or I can't remember welcoming you] since I was in a bad set of days then. But, welcome, and so sorry you need to be here.

    I too have my fourth A/C this week as does Hopeful. We are planning a mini-cyber-celebration after we get past day 6.... care to join us?

    I can't imagine working as a school nurse during this; how strong you are! But if you felt relief at taking some time, it is clearly the right thing to do. My work hours have dropped so dramatically, I have no idea how we are going to pay for heating oil. So far, we simply aren't turning on the heat! Being bald with no heat is certainly a new experience for me.

    What day is your fourth treatment?

    *susan*
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  • txred9876
    txred9876 Member Posts: 392
    edited October 2005
    Sometimes I wish I was not having to take 6 rounds of chemo...but I am now half way though and I am feeling ok other then being pretty tired. The key is to not get sick this time and stay out of the hospital.

    Carol....when I went to the hospital last week I had horrible diarrhea for about 24 hours then the fever started. They are still not sure what I had or did not have they were just keeping me hydrated and full of antibiotics ...as well as checking my white counts.

    I hope things work out for you.
    Tina
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  • nmherr
    nmherr Member Posts: 63
    edited October 2005
    Carol and Tina,
    So sorry you had to endure all the pain. It is terrible when the Professionals aren't sure what they did to you. I am thinking someone forgot to give us the right manual. I am just glad to have the other women here to help.
    Tina,
    I am glad you recieved the finacial aid. It is so surprising to see the bills for the drugs, surgery and all the doc visits and wonder how they are all getting paid. It isn't like they give us a lot of time to figure it out.
    Bubbles,
    How goes it? I am very grateful, still, for your warning about the constipation and the diarreah. I started to look at what I thought had fiber in it and realized that I was lacking. And some people think counting calories is hard. I think we should all be able to graduate pharmacolgy school when this is done.
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  • AussieMum
    AussieMum Member Posts: 124
    edited October 2005
    Hi all!
    I saw this quote (don't know who by) and thought of all of you.

    "Patience is waiting. Not passively waiting. That is laziness. But to keep going when the going is hard and slow - that is patience."

    our going IS hard and slow, but you just keep going. How strong and patient you all are.
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited October 2005
    AussieMom.

    Nice. I googled it and it turns out that not only do you not know who wrote that, no one does. For more patience quotes: http://www.borntomotivate.com/FamousQuote_Patience.html

    How are you doing?

    *susan*
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited October 2005
    The June group is as vivacious and close as our group has become. Like us, each of those women has a distinct and unique personality; each of them is dealing with their dx and treatments in their own way. This posting by NoSurrender says a lot. Thought some of you might enjoy it.

    http://www.breastcancer.org/ubbthreads/showthreaded.php?Cat=0&Number=198065&page=0&vc=1

    *susan*
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  • tinkermax
    tinkermax Member Posts: 269
    edited October 2005
    Susan

    Thanks for posting noSurrenders messgae.
    It is brilliant!

    Maxine
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  • tornadogirl
    tornadogirl Member Posts: 133
    edited October 2005
    Ditto about NS post! Thanks for bringing us to it, i went and thanked her for posting! i love you all and we will get thru this.

    That diaraeah is tough. i know my bowells are either DRIED out by cells slouhing off from the chemo and all the other meds (leads to constipation) or they are UPSET and INFLAMED by this chemo.

    i landed in hospital too because of bowel issues which caused me to write that post about constipation.

    i wish there was a good edible "chemo bowel grease" we could eat that would taste good and eliminate these bowel issues!!!!!!
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  • Pegk
    Pegk Member Posts: 389
    edited October 2005
    Okay! I need to express another point of view from No Surrender. I just got back from our local Making Strides for Breast Cancer walk. There were thousands of people there. No, a lot of them don't know what we are going through (and I hope they never do), but all of them have their hearts in the right place. It was a festive atmosphere with local TV and radio personalities, and lots of pink ribbons and baseball caps.There were many survivors and friends and relatives of victims and they were all there with pledges, and support and hope. I felt fortunate this morning that I felt good enough (day 6 after chemo) that I was able to participate with my family, friends, and neighbors, and I hope you all will be feeling better, too.
    Sometimes this feels like a nightmare, and I wish that I would wake up and would feel healthy again, but I appreciate having this outlet to express my feelings and to know that I'm not alone. Our experiences may be different, but we're all in this together.
    Love, Peggy
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  • AussieMum
    AussieMum Member Posts: 124
    edited October 2005
    Thanks Susan for asking:
    Quote:

    How are you doing?





    I'm doing OK.

    I visit the board every day, but I'm losing track: the number of people, who is who with which point in treatment, problems, frustrations, side effects, joys, events, families etc.



    Hopefully just chemo brain and I'll clear eventually.

    I'll keep visiting though!
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  • tinkermax
    tinkermax Member Posts: 269
    edited October 2005
    I think we all feel a little like you at times Aussiemum. Chemo brain is definitely setting in for me.

    Good luck tomorrow with your port removal Sandra.

    Hope everyone else is doing ok

    Maxine
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  • leannem
    leannem Member Posts: 137
    edited October 2005
    HI all

    Gosh I know what you mean about the chemo brain. I feel as though I am permanently in a fog. Any ideas when this fades or is here to stay till end of chemo??

    I am away on holidays at the moment visiting family with the kids. Unfortunately both have come down with some kind of cough/cold thing and with me at 12 days post chemo really not a good time to be dealing with them! I am tired as anything and just want a full night sleep. The little buggers are up on and off all night at the moment so hopefully it eases soon. Praying I don't get what they have.

    That's what I wanted to ask- what do I do if I start to think I am coming down with something and I'm away? I am a bit sniffly today, tired (nothing new there though) and possible slight temp. Advice please??

    Like a few of you have mentioned it gets a bit hard to post to everyone individually at the moment, but I visit and read everyday and keep up to date with all your milestones.

    Love to you all
    Leanne
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited October 2005

    Happy Birthday Leanne!!!!

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited October 2005
    Peg,

    I am so impressed that you could go out on a Day 6! Congratulations on making it through your four A/C treatments!!!!!!

    I was still at the casino on Saturday so I missed any and all Making Stride events, though a friend of my mother's embroidered my name on her shirt for the Komen 3-day walk this weekend in Tampa. She is a 15-year survivor.

    And that is the goal. Fifteen years and strong and healthy and vibrant.

    *susan*
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  • tinkermax
    tinkermax Member Posts: 269
    edited October 2005
    Hi Leanne

    What i've been told is, if I feel unwell or have a temperature, to phone my oncologist or if its at night, to go to my local hospital.

    We cant take anything for granted on chemo, we don't have enough anti-bodies to cope with a normal cold.

    Might be an idea to phone your onc if you're not feeling to good and see what he/she says.

    Take care of yourself

    Maxine
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  • Pegk
    Pegk Member Posts: 389
    edited October 2005
    Happy Birthday Leanne!
    Hope you're enjoying your holidays and I hope your family is helping out with the kids. Rest is so important. Be careful with those sniffles. Don't forget a little infection from them could turn into a big problem for you.
    By the way sniffles for us hair challenged ladies could be nothing more than lack of nose hair!
    Love Peggy
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  • marg1
    marg1 Member Posts: 73
    edited October 2005
    hello everyone, Marg here

    I started my period on SAT and my flow is so heavy. I use to have some blood clots during menstruation but now its crazy, 2-3 at a time while I pee. (I know this is gross but...) Anyone else with a heavier flow during chemo?
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  • Pegk
    Pegk Member Posts: 389
    edited October 2005
    Susan,
    After the excitement of the morning, yesterday, I crashed for the rest of the day. I'm just emerging now to deal with the noise of construction and chaos in my house. I think I'll take a walk with the dogs. At least it's not raining!
    I know a lot of you are heading into treatment this week. Good luck. This is my off week. I'm going to try to make the most of it.
    Be well everybody!
    Love, Peggy
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  • nmherr
    nmherr Member Posts: 63
    edited October 2005
    Hi Leanne,
    I have the sniffly thing all the time, it is from the Cytoxan for me. However, The first real bad time I got it I looked for infection in the mucous.(Sorry gorss) As soon as it turned yellow or worse greenish I immediately went to doctor and got an antibiotic and was on it for 10 days. Try to take over-the-counter stuff if it is just sinus problems but at the first hint of infection get someone to give you an antibiotic. My sniffles turned nasty quickly but with the antibiotic they also improved. I wouldn't be afraid to talk to your doctor about the kids being sick and telling them what they have and should you use something to prevent you getting sick.
    Isn't it funny how you start looking at children as little germ making machines? My neighbor who had previously taken the most care of me hasn't been over for 10 days. Why? Her little ones all have colds and illnesses. I see children when I am out and cast them suspicious glances. Not that I have strange children running up to me but I know if it happens it is going to be the one with snotty nose. I love young children as they are so full of life but right now I fear them.
    I don't want to sound like your children are awful. The first time I had chemo my son was in kindergarten. I didn't catch anything from him and I went through 6 treatments of 4 powerful drugs including 2 of the ones we are on right now. So I will pray that you stay well and that God gives you the extra strength you need. Remember that all the exercise you are getting is probably in your favor.
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  • nmherr
    nmherr Member Posts: 63
    edited October 2005

    Marg, How unfair is it that we still have to get our periods. Yes I had a period between treatment2 and 3. Mine was not heavy but lasted for 12 days. The chemo definitely messes it up. You need to keep in account all the drugs your body is processing. It wouldn't be wrong to talk to a doc or nurse about it if you are worrried. I think the clotting thing isn't a problem. Did anyone else recieve a manual of problems and their solutions with this stuff? I must have lost mine.

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  • Calico
    Calico Member Posts: 1,108
    edited October 2005
    Hi all,

    Happy Birthday Leanne.

    Pegk, I don't know how you do it....

    I finally feel like writing a minute.

    I am bald with a few specles left and I CAN'T stand anything on my head.
    Wig, hats etc, everything is bothersome.
    At night I feel like I have hotflashes on the back of my head. What is that? Remaining hair coming off?

    I just have to go bald...tried it partially around the neighborhood, hat on - hat off, what a torture...

    Is anybody else that sensitive?
    And the smell of the new hats too, just awful to me.

    Hope you have a good Monday.

    God Bless
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  • txred9876
    txred9876 Member Posts: 392
    edited October 2005
    Cali,

    I have found that I have one beret type hat I can wear some of the time.....but I am thinking likeyou...I do not like anything on my head.

    Heres a funny so to speak...I went with my boyfriend to the local Jiffy lube....The tech came over and say hey guys....then OOPS>..when he saw I was a woman (I still have hair...never cut it off....not much but enough that you can tell ....)
    He appologised and we got a good laugh out of it...then he got all serious...His GF just got diagnosed with ovarian cancer...I gave him my email and told him to have her email...even though it is a different type....I wanted to help.
    So this one thing may have an impact on someone elses lives...

    You never know what you might be needed....I think I am planning on going without anything most of the time now.. (other then meeting clients..LOL...)

    Tina
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  • sholroyd
    sholroyd Member Posts: 288
    edited October 2005
    Susan – thanks – I related to the link to the June postings and had a good old giggle at the same time. I am fed up with seeing Pink around so much at the moment as this BC thing seems so ‘in my face’ but I do realise we need it also, so well done Peggy.

    My Port has now been removed. The staff were very kind and gentle so it was no big deal. It was interesting to see just how much of the line was inside. Got to spend another morning at the hospital tomorrow to work out the Warfrin to continue with my blood thinning – thankfully my arm is much less painful now. I will just be sorted in readiness for round 3 next Tuesday.

    Marg – my period was heavier, clottier and lasted a little longer – I hope they will go altogether by the end of treatment.

    Leanne – agree with all advice given – just take care – you are No 1 here, especially on your birthday.

    You bald ladies are so brave – I still haven’t bared all to the hubby yet – wear my bed hat at night – blue one with little bobbles on the top, headscarf around the house and ‘the animal’ when I go out.

    Speak soon

    Sandra from the UK
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  • lisag
    lisag Member Posts: 22
    edited October 2005
    Hi Susan,
    My 4th AC is on Thursday, I go back on Fridays for fluids and so the nurse can chase me around the room to give that neulasta shot-boy that thing stings. Karma kickback for all the immunizations I've inflicted upon children, I'm sure. Would love to celebrate with you and Hopeful. When is day six for you ? Will any of you ladies be also moving on to the delights of taxol next?
    Thank you all for the welcome, I'm starting to learn your names and appreciate the community.
    Aussie mom, thanks for the quote on patience, I taped it to my calendar today.
    The baldness does do weird things to temperature regulation-I find myself sweating one minute and whipping off the hat to wearing a scarf and a hat-or maybe it's chemo induced hot flashes, but I didn't think it would happen this quickly. Oddly enough, am getting used to occasional baldness in public so I'm a little surprised when I see people doing a double take. Makes me wonder since it's October we should be painting big pink ribbons on our scalps.
    Susan, Boston without heat in the winter would be intimidating without what you are going through!
    It makes me sad and angry when anyone has to struggle financially on top of getting sick. I know that there are people out there who want to help. I know the Komen foundation has grants to help woman through tough times.
    Another resource I've found useful is www.needymeds.com. It's a place you can download applications for medication scholarships from drug companies. Worth trying if any of you know of underinsured folks.
    Will not be going back to work after this week until January, am looking forward to napping in the daytime!
    Lisa
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  • Snickers
    Snickers Member Posts: 1
    edited October 2005
    Hi Brenda,

    I am from the Youngstown area and am having treatment at Cleveland Clinic, Beachwood. I have had 2 rounds of AC and my third is this Thursday, October 20. I will have a total of 4 rounds of AC, then 4 rounds of taxol and then on to radiation. I have a treatment once every 3 weeks. How are you doing through it all? So far, I am wearing pretty well, although I dread going for each treatment. I can't wait until this is all over! Please let me know how the treatments were for you. Thanks!
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  • Cerridwen
    Cerridwen Member Posts: 9
    edited October 2005
    Oh I hadn't see this b4 I started chemo on 30 september but believe me or not docs have not told me what kind of meds I'm taking ..the only thing I heard (because they did not tell me) was something like vincristin , my second chemo is the next week and I'm scared I have lost my hair (all my hair)
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited October 2005
    Cerridwen,

    I have read your other postings, and I am so glad that you finally found us. To be 22 years old and already been through so much, well, I can't imagine it. take some time to read through our forum.... we have all had a long journey with different obstacles along the way. We are here to answer any question you have, and support you in any way you need.

    All the best,

    *susan*
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  • Pegk
    Pegk Member Posts: 389
    edited October 2005
    Cerridwen,
    You have a right to know what drugs they are giving you. You should be able to speak to your doctors and nurses about bad side effects and ways to alleviate them.(At any time!)
    I'm sorry that you have to be here, but I hope that we can help you get through this. (I'm afraid I've never heard of vincristin)
    Be strong!
    Love, Peggy
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  • Pegk
    Pegk Member Posts: 389
    edited October 2005
    More about Breast Cancer Awareness Month
    I agree that I'm tired of all the "Pink" marketing ploys.(Buy my lipstick and I'll donate 20 cents) ,but if it gets some women to the doctor in a timely manner it is worth it. It seems to me after surveying these boards for a couple of months that the number of young women affected by BC is shocking. Not enough is being done to educate the population and the MEDICAL COMMUNITY that a lump should be checked no matter how old the patient is. I discovered during the walk on Sunday that a close friend of mine lost her brother to breast cancer 11 years ago.
    I'm over 50 and I feel that I'm dealing with my situation well, but when I read about Cerridwen and the other young women, I want to weep. It's hard enough fighting this disease, but it makes it so much harder when you also need to struggle to get information, the necessary tests, and the medications you need.
    Keep fighting! We'll all get through this!
    Love, Peggy
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  • joannar
    joannar Member Posts: 30
    edited October 2005
    Hi, my name is Joanna, I am 33 and was diagnosed on July 21, 2005. I had multifocal invasive DCIS. Three masses 0.5, 0.2 and 0.1 cms in right breast, ER-, Her2-, node -. I had a double mastectomy (july 29) with reconstruction (tissue expanders untill Feb). I am currently doing dose dense AC + T. My first AC was Sept. 13. So my last AC is on tuesday 0ct. 25.
    I have a wonderful husband and 2 amazing sons ages 5 and 3.
    I have only breifly looked at this board and it seems like a great group of supportive women.

    Joanna
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