Starting chemo Sept 05

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  • tornadogirl
    tornadogirl Member Posts: 133
    edited October 2005
    I made a mistake. Sunday i had the
    WORST constipation ever and started some bad hemmoroids. had fever of 101.2 and chills so had to go to the ER for 4 hours but my counts were good enough they told me to go home, no antibiotics.

    Well, l had started taking more stool softeners, milk of magnesia, etc to try and correct the problem and maybe i took way too much since now i have had diaharea since monday! I guess I should not have drank that prune juice on Monday and Tuesday either!

    I have taken like 100 hot salt baths and used the stuff down there, etc. Who knows when the pain will end.

    Terrible roids and constant diareaha (spell?) do not make for a happy week and today I am supposed to get the 3rd AC.

    At least I do not have constipation or a fever. But I sure want you all know that this chemo is a balancing act on your colon.

    DO NOT MAKE MY MISTAKE OF TAKING VICODIN AND NOT ENOUGH LAXATIVES WITH IT.

    Seems like ya never know if you will get constipation or diahreha with the chemo treatments. So you have to take laxatives with any pain meds and then just guess on the rest.

    SAVE YOURSELVES! please dont make my mistake!
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  • jlpd
    jlpd Member Posts: 54
    edited October 2005

    Bubbles, so what is your normal routine to avoid constipation during chemo...I started taking docolax stool softeners...and I'm going to take a fiber pill with each meal...but I don't want to go through constipation this time. Thanks. Janet PS Hope you feel better soon...at some point, there won't be anything left to come out!!!

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  • Pegk
    Pegk Member Posts: 389
    edited October 2005
    Happy Birthday Susan!
    I hope you and Cory are having a great time at the Casino in Connecticut. I assume you're taking out your violin for this gig. Are you playing country, rock or classical (at a casino?). I hope you've been able to log on today, because there's a little birthday cake next to your posts.
    Enjoy 6 normal days, celebrate, but take it easy when you can.
    Love Peggy
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  • tinkermax
    tinkermax Member Posts: 269
    edited October 2005
    Happy birthday Susan

    I hope you have a great day.

    Maxine
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  • tornadogirl
    tornadogirl Member Posts: 133
    edited October 2005
    Yes, JL, I am almost afraid to eat! I am used to taking Senna or ducolax for the first three days after treatment and taking one each time i take a pain med.

    But now i am going to be even more diligent and take about three each time i have to take a pain med. maybe i would rather have pain than constipation....and then diareah!
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  • Pegk
    Pegk Member Posts: 389
    edited October 2005
    Sandra,
    Thanks for pinpointing your location for me. I haven't gotten a map yet, but I've found you in my atlas. I love to travel, so I love looking at maps, and wondering about places. I'd never heard of Tamworth before, but now I Know your near Birmingham, which I've passed through many years ago.
    In the early 80's, I traveled around the US as part of the backstage crew for different bus and truck productions of Broadway shows, so I've been to most of the states of you American posters. I'm afraid I've never made it to the Pacific Northwest, so I haven't been to Oregon.
    If anybody finds themselves in NYC or the Hudson Valley, I hope you'll let me know!
    Love Peggy
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  • tornadogirl
    tornadogirl Member Posts: 133
    edited October 2005

    happy birthday Susan!

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  • Pegk
    Pegk Member Posts: 389
    edited October 2005
    Okay, back to BC.
    I'm sorry some of you haven't been feeling well. Carol, that seems to be an interesting connection that your nurse made about pregnancy morning sickness and chemo nausea. I'll admit I never suffered from morning sickness, and I haven't had a problem with nausea during chemo. I take Emend and dexamethasone for 3 days and that seemed to be enough (along with eating lightly every 2 hours)
    Norine, I'm glad your feeling better. I enjoyed reading about your hat shopping trip. I still haven't had the courage to go bald in public.
    Calico, I like the idea of the message on your head. Let us know if you do it.
    Leanne, Congratulations on your clear bone scan.(and I think "furry beast" is a perfectly appropriate name for your wig)
    Sandra, I hope you get good news, too.
    Janet, I've heard that breast surgery will impose limitations on lifting heavy weights. I hope that you can find a way to overcome that problem.
    Barb, thanks for your warning. I've found that my digestion seems to slow down a little right after chemo days. I eat high fiber cereal every morning, and if I don't panic it moves along after a couple of days. If I start to feel uncomfortable, a couple of colase seems to do the trick.
    Have a great day everybody!
    Love Peggy
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  • sewmanythings
    sewmanythings Member Posts: 12
    edited October 2005
    Good day all!

    I am still feeling strong. Suffering only frm heart burn and Face sweating -but I can cope with this. Tomorrow I go for my first Blood test... Please tell me what does these test check for and what results am I expected/ or want to get?

    Peggy..... I am able to take time off.I am blessed to have excellent staff and they are so supportive. You are brave to do alterations. Its much easier to quilt!! I love my shop and want to be in it all the time.

    Lots of Love to everyone
    Monique

    Thanks and love to all
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  • nmherr
    nmherr Member Posts: 63
    edited October 2005
    Bubbles
    Thanks for the save yourselves message. It made me lauagh but I know you are serious. Funny how just today in a vicoden funk I thought about the constipation that might go with it. I just ran out of high fiber cereal and now I read this so I am putting in an emergency call to a neighbor to retreive some for me. I decided since I didn't have cereal I will eat fish. May be the chemo but I thought the oil in fish might help it go through. I could be wrong.

    Janet,
    I know they give you limitations and you should follow them. Can you bandage with a big ace bandage where there is swelling? That will help the body absorb the liquid. I also bandage if I am doing more questionalble activity than I think I should be doing. I would take it easy for now especially with the heavy lifting.

    Susan Happy Birthday. I will eat cake for you today.

    On the lighter side. I decided to try a little root beer today. I only drink water and milk mostly and saw the bottle beside the fridge. It called me. I said ok. I thought it through and as I was opening it thought as long as I get the fizz out of it I should be able to drink a small glass. I turned the top and FFFSSSSHHH all over me all over the dog and all over the kitchen. The dog looked at me like 'WHAT ARE YOU DOING?' He wouldn't even lick it to clean it up. I have seen champagne celebrations on TV that couldn't rival this explosion. So on my low energy day I had to wipe down most of the kitchen, wash 2 throw rugs and mop the floor. Then I had to change the outfit, I had just put on, and throw it in the wash as it was soaked with soda too. I drank a small amount of the root beer. mostly out of spite, which went awful with the chemo taste. Some days you just have to get back to the lazy chair as quickly as possible.
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  • jlpd
    jlpd Member Posts: 54
    edited October 2005
    On Norine...I know what you mean...you search for something that sounds good and then when you taste--yuck. I will try the ace bandage wrap and see if that helps when I'm working...



    Monique--my first blood tests were a CBC and a differential (which test blood count levels like your white count, red count, plasma, hemoglobin, sugar, etc.) THe third on was for establishing 'makers', which are an indication of cancer if it changes and what they use to determine if the cancer may have recurred. Hope you get a nurse who knows how to stick you. The one I had yesterday was a bear...the first two were geat! Oh, well, two outta three ain't bad, right? lol.



    Tomorrow I go for a pelvic ultrasound...I've had issues with a large fibroid on my uterus...and I want to see if it has changed from last year and make sure my ovaries look clear...We'll see. Since I'll be taking myself, I won't take an avitan before I go!!! They said drink plenty of fluids so I would have a full bladder...I laughed!.



    Talk to you all later. Janet
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  • jlpd
    jlpd Member Posts: 54
    edited October 2005

    Well, just came back from running to the hospital. It seems they decided I would need the nuelasta shot now...instread of next week to see what my counts were. Two weeks ago my white blood count was 500, yesterday it was around 1000, which is borderline for even giving me chemo...so they did and they had me come in this afternoon to get the shot. You all never told me that the shot HURT. It wasn't the needle, but the fluid going in you. Ouch! She put me on ibupropen (advil) prescription strength!. In addition I didn't get my much need nap...either the phone would ring or the guys coming to put in a new door showed up..I'm tired! Well need to go check on my babies ...talk to you all tomorrow. Janet

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  • txred9876
    txred9876 Member Posts: 392
    edited October 2005
    Hello all...just stopping in for a few...had AC # 3 today....so far so good..but off to the couch....

    I finally got approved for medicaid! Thank goodness....each of the first two chemo tx's were 8700+ each.....

    I saw my oncologist today and he thought my tumor has shrunk. I have also (as did he) notice that where the inflammatory is .....is a light pink rahter then a bright red now....come on AC do your stuff!

    ttyl
    Tina
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited October 2005
    Friends,

    And so my birthday comes to an end. Following the show tonight, most of the band went out to eat a late supper and sing "Happy Birthday" in celebration that I am still here. Working at a casino is truly surreal since I am not a gambler. I do like having access to the employee cafeteria 24/7. I can snack without preparing or cleaning up. The hardest part is fighting the boredom. We only perform for 2 hours a day, which leaves lots of hours to fill.

    Thank you for all the birthday wishes.

    *susan*
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited October 2005
    Hopeful,

    We are indeed on the same schedule, and we will celebrate together when we get past day 6 of that 4th treatment. You can count on it!

    And, I love the pez dispenser! Cory and I are coming to an understanding here at the casino. She looks good if you have no idea what I am supposed to look like. But, I still go bald except when I am on stage. That is who I am, and I carry my head high.

    *susan*
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited October 2005
    Carol,

    Interesting connection there [morning sickness/chemo nausea.] My oncologist believes that the amount of nausea you can expect is related to your nausea levels while traveling. Before prescribing my medication, he asked some very pointed questions about when and if I got sick while traveling.

    Another possible connection.

    *susan*
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited October 2005
    Quote:

    I asked when I could go back to lifting hay bales and 50 pound bags of feed, etc. (I have a small horse farm in addition to my full time job)...and she shook her head and said 5 to 10 pounds...basically forever. I looked at her, almost in tears, and said "I won't accept that!"...Please let me know what your doctors have told you regarding a mastectomy and resuming a normal life. Thanks. Janet



    Janet,

    I wouldn't let a nurse oncologist discourage you! But, you also need to learn to control the fluid build up, and for that you need a specialist. Though they are hard to find, look for a lymphodema physical therapist. You might need to travel to see one, but your quality of life is worth the fight.

    Take care,

    *susan*
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited October 2005
    Tina,

    Congrats on getting some financial assistance! I hope that helps you put that stress, if not behind you, to the side of you.

    *susan*
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  • txred9876
    txred9876 Member Posts: 392
    edited October 2005
    I guess we never know how each of our treatments will be.....so far this one has been different then they last two.....go figure! I have had my share of nausea this time but no vomiting (guess its time for some phenegren). I have also had quite a bit of bone pain from the neulasta shot. I am wondering if the pain pills are not part of the nausea....hmmm..will have to look into that.

    One of the biggest burdens has been lifted financially with my medicaid approval. I get to go back to the female breast surgeon whom I really like to do the mastectomy! I am so excited. I thought I was going to be stuck with a doctor I did not like!

    I hope all of you are doing much better today!
    Have a great weekend.

    Tina
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  • tinkermax
    tinkermax Member Posts: 269
    edited October 2005
    Thats brilliant to hear Tina...some good news for you at last!

    Maxine
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  • sholroyd
    sholroyd Member Posts: 288
    edited October 2005
    Hi all

    I am pleased with your news Tina – you should not have more worry than necessary at this time.

    Susan – wish I could have been there to sing ‘Happy Birthday’.

    Interesting discussion – I had lunch with an old friend today. Two years ago she had BC (age 40) and during lunch we discussed whether she had morning sickness when pregnant, she did and she also experienced sickness with treatment. I didn’t have morning sickness and (so far) I have not experienced sickness during treatment.

    Well folks, I am booked in for 8.30 am Monday morning to have my old friend Hickman taken away from me. Tuesday I have to be at the hospital to sort out Warafin etc etc etc. I have had to go to, what I now call ‘The Conservatory’ (hospital) every day this week. District Nurse is coming to me Saturday and Sunday for my blood thinning injections – you’re right Maxine this thrombosis business sucks!! However I am grateful the pain is now subsiding in my arm.

    Thank you for your support – speak soon.

    Sandra from the UK
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  • tornadogirl
    tornadogirl Member Posts: 133
    edited October 2005
    Janet I so admire your strength and determination..i can just picture ou out there lifting bales of hay and stuff. But please think of your arm. you do want to avoid lymphadema if you can and lifting like that can promote it.

    Here are some ideas for you:

    1. Get a 30 inch high dolly to help lift them
    2. Get a special hay baler hoist i think you can ask at feed stores
    3. Buy smaller bags of food and cut bales in half or smaller when lifting.
    4. Get or pay somebody else to do the lifting and you do other stuff.

    Girl, ya hafta take care of that arm FOREVER. And you dont want to strain the other arm lifting heavy stuff with just one arm either.

    Please find a creative way to get those horses fed and stalls cleaned without doing permanent damage to your "special' arm!
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  • jlpd
    jlpd Member Posts: 54
    edited October 2005
    Bubbles...the only part is that the swelling is NOT in my arm. It's in the side of chest cavity and around the area where they took out the lymph nodes beside my breast. Next week I'm going in search of a physical therapist who can help me with this. In the mean time, I'm going to work extra hard to not lift anything. I'm finding that even lifting with my left arm, pulls on the area. Weird.

    Hey, this will be the weekend for the buzz cut. I'm pulling out clumps of hair! It makes it day four after my second treatment (ie. day 25 in tota). It's driving me crazy... Maybe we'll do a buzz cut party tonight! lol! Well, need to take my son out for a practice drive...he got his permit recently and needs a lot of work!! Talk to you all later.
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  • tornadogirl
    tornadogirl Member Posts: 133
    edited October 2005
    I hear ya my friend, but did you reaklize that people get lymhodema 10 years after the surgery if they stress or injure that arm? I hope your swelling will go down, seems like i has a little bit of that for about a month, it felt fat under my armpit, and then it went away.

    i am just thinking of your distant future. Talk to a specialist, ok?
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  • sholroyd
    sholroyd Member Posts: 288
    edited October 2005
    Janet I will be thinking of you. You seem to be at the point when I made the decision to get my hair buzzed cos it was driving me crazy and coming out in handfuls. Once I had made the decision and then carried it through I did feel much better – another obstacle overcome and something less to worry about.

    Do I take it you all still iron with the lymph arm?? I didn’t for a few weeks after the op but I am more or less back to normal with it now, just take a break if my arm begins to ache.

    Sandra from the UK
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  • jlpd
    jlpd Member Posts: 54
    edited October 2005

    Sandra...Iron...If something needs to be ironed, I don't buy it!! lol! Actually I only have a few items that need to be ironed. What I do find is that I have to vaccum...seems no one else around here can see the dirt and that's with three dogs that come in the house! Go figure!

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  • cazza61
    cazza61 Member Posts: 34
    edited October 2005
    Hi all
    A/C #3 didnt go to well.Went to the emergency room with servere pains in tummy,turned out that the chemo or 1 of the meds has inflamed all my bowels whole tummy is full of wind and have servere diahria,kept me in for 24 hours with just a drip and ice to suck not very good for mouth because it all swelled from being dry and couldnt eat ot suck anything for the yucky taste in mouth.this chemo effects different ppl in different ways next time im not allowed they are going to try 2 days on drip and clear fluids,thats if I go back lol.
    love carol
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  • lisag
    lisag Member Posts: 22
    edited October 2005
    Thank you Norine, for the laugh with your chemo fog story! Boy does that hit close to home this week. Wednesday I got back to work and couldn't remember a darn thing I did the week before, and crashing to the sofa immediately at home. I was driving home feeling depressed and thinking how much I didn't want to go back for AC #4 this next week. Decided with my oncologist last week I need to take a work leave until the end of treatment and am feeling much relieved now. I'm a school nurse and probably not so good to be around all those fall sniffles and worse, and I think my own kids need what is left over of my energy now. Think I under estimated how tough the dose dense and the chemo itself would be... so much easier to keep moving, keep working and not think about BC.
    Thanks for your words of wisdom and keep up your spirit.
    Lisa
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited October 2005
    Janet,

    Happy Buzzing! I don't know how to describe this, but not having hair is, well, a little freeing. Can't explain it at all, but I don't really mind it [and I was very attached to my hair!]

    I am so glad to hear that you will search for a specialist. I know that Duke has a whole department of lymphedema specialists, but maybe you can find one a bit closer. Until then, be gentle with your body.

    And Sandra, ironing??? Only linens for holidays. Well, and two shirts that I just love. Sweet that you do though. You are a better woman than I!

    *susan*
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited October 2005
    Oh dear Carol, what a horrid experience you have had. I certainly hope that your oncologist can determine what caused this reaction and then make appropriate adjustments for you.

    Clearly, this isn't an acceptable side-effect [though which side effect is?] and needs to be addressed by your medical team. I hope that you get some answers soon.

    Stay strong.....

    *susan*
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