April 2015 Chemo Crew... Starting in April? Please join us!

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  • AndreaC
    AndreaC Member Posts: 220
    edited July 2015

    Good morning all!

    I have been out of the loop for a few days because we have been camping in a field at a music festival with no internet.

    It has been eventful, to say the least.

    I had my 4th and final TC on July 3rd. Normally the SE's last about a week then I am fine. So I came to the music festival on day 5 (a couple of days early...my husband is a coordinator), thinking I would be fine on Friday. Not so. I was still feeling weak, nauseated, short of breath, had diarrhea and that night developed a high fever (102.5). So off to the hospital I went. My white count was fine thanks to the Neulasta but I had a chest X-ray, gave a urine sample and they took lots of blood. My potassium level came back really low...2.7 (should be at least 3.5). So I stayed overnight while I got IV and oral potassium, plus Tylenol and an antibiotic. My potassium level was rechecked in the morning...still a bit low but I was allowed to go home after drinking some more vile potassium liquid. I am to return to the hospital today to have my potassium rechecked. I have been taking the antibiotics twice a day too, and no more fever.

    All this while camping in a van in a field. Luckily we have friends in town so I stayed indoors on Saturday, napping and reading. Good thing too, because that day, after a two month drought, the skies opened and it started pouring! I did go back to the music fest that evening to see Buddy Guy...in the rain, but our friend had a small shelter tent thing we were under. Great show!

    Anyway, we leave town today and go home! After checking in at the hospital, of course.

    Does anyone else get unexplained fevers with their chemo? They can never find a source of infection and this has happened with 3 of my 4 cycles.

    Andrea

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  • KBeee
    KBeee Member Posts: 5,109
    edited July 2015

    Little Blue, I hope those hands improve...ouch! Sounds painful. I was just packing a chemo survival kit for a gal who is friends with 3 different friends of mine; I've been texting her for the past 2 weeks since she got her chemo start date. She's scheduled tomorrow for the same time as me! I started when a friend of mine was on Taxol 8...we always went together. Not she's starting when I'm on Taxol 8! One of the things in the bag is a flames skull cap. I put sticky not es on everything in there. That one says "For when you feel like a badass (or for wearing around the house when it's chilly). I like that I'll have a chemo friend, but I hate that there's someone new starting this life detour. The ponytail did not arrive yet. PTSD-like feelings are very common post chemo. I try to just take things a day at a time then...just like now.

    Dizzparkmom, Wow! Long day. I hope all results bring great news. Keep us posted!

    gkodad, I hope the numbness does not worsen!

    Lynne, I hope #3 goes well today! Hope you can skip the neulasta too!

    Addie, So glad you're feeling good on Taxol!!!!! Glad you got a nice visit with family this weekend. I hope the headache eases.

    Ksusan, Yay for hair!!!!!

    Katy, I hope you start to feel better.

    Scarlett, Feeling any better???


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  • Scarlett152
    Scarlett152 Member Posts: 175
    edited July 2015

    Andrea, I had unexplained fever 14 days post TC #2 with ER visit, tests, etc. ER said virus, MO said either virus or good 'OL taxotere fun!

    Not sure if I'm better today. Taking it slow. Lightheadedness seems better, but bone pain in legs still very painful. I know it's just going to be a little harder and a little longer this time, but anxious for it to be "over." Going to try another walk today.




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  • ksusan
    ksusan Member Posts: 4,505
    edited July 2015

    Littleblue, I still look like your great-uncle.

    image

    Well I'm not uptight / not unattractive / turn me on tonight / I'm radioactive.--The Firm

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited July 2015

    Little- Amazing in the hike! You're s badass too! Sorry about the fingers. Ouch!

    Scarlett- hope today is better for you. Keep taking the pain meds if you bed to. Don't try to fight alone. That's what they're their for.

    Dizz- I agree with Lttleblue- amazing good sign overhead! Wishing you all the best. Your sisters are here for you. Good energy coming your way.

    And wish all "riding" this week the best possible. Minimal SEs. Maximum cancer killing. Sending mojo to you all.

    Katy

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  • Stephmoen
    Stephmoen Member Posts: 563
    edited July 2015

    at the ER my port is swollen and hurts they are worried about jnfection I can't catch a break

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  • ksusan
    ksusan Member Posts: 4,505
    edited July 2015

    So sorry! Best of luck with at least some pain relief. It was a happy day when I was done with my port and it was removed.

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  • GingerChi
    GingerChi Member Posts: 252
    edited July 2015

    Oh Steph! I'm so sorry, hoping for the best!

    kbee, congrats on the 5k, that is fabulous!!

    Same to you littleblue on your mega hike, how do you do it? Sorry about your hands....sounds painful!

    ksusan, Hope that rads go well! thanks for updaing on this. It hasnt been decided if I will need it or not...glad to know some of what to expect just in case. Woo Hoo on the new hair! :)

    Dizz, hope everything went well for you today! And Happy Birthday tomorrow!!!! My b/day is Wednesday.

    Taxol #2 and Herceptin #1 for me tomorrow. Looking forward to getting back on track, but dreading it too!!

    I hope everyone has a restful night.......... SE be gone!

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  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited July 2015

    THANK YOU ALL FOR THE PRAYERS AND POSITIVE THOUGHTS!!! Just finished with MO and I have a radiological complete response just from the 4 a/c treatments. Could still be cancer in there, but too small or hidden for mri to see. What was there on the first MRI is gone or too small to see. I still need 4 tax and carbo to "mop" up the scene and then will do double mx to increase chances of my psychological sanity. As to what I have been poking all week thinking it was the tumor, hard to say...says that the edge of a rib attaching to the sternum could have some arthritis inflammation, or it could be fibrous scar tissue...He's 100% positive it isn't the cancer.

    So yes, having lightning and a thundercell erupt over you hotel just before an mri is a Great sign.

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  • SueH58
    SueH58 Member Posts: 632
    edited July 2015

    Addie - glad you're doing better!

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  • Rpayton
    Rpayton Member Posts: 235
    edited July 2015

    Hello All:

    Horrible day of symptoms telling myself only 1 more in 3 weeks. I know each day will get better but today is just plain awful nausea, agitation, extreme fatigue, heart racing, bloating, hot flashes, etc., etc.. Woes and whine away I go. Just going with the crash sleeping and totally being lazy. Glad to be inside in air conditioning as we have hot, humid weather and pop up storms today and tonight. And I know all can be worse. So I should snap out of the blues.

    Karen great job on that 5K! I hope you have many more planned!

    Lynne thinking of you and your toes, ouch.

    DizzParkmom glad you are feeling good about treatment and explanation from MO today.

    Andrea hope you feel better fast and get rid of the virus.

    Susan Yeah for baby hairs.

    Stephmoen praying no infection in your port or that it heals fast for you.

    Littleblue I hope those hands heal.

    I'm behind reading so everyone else I forgot hang in there and be well.

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  • lovlilynne
    lovlilynne Member Posts: 405
    edited July 2015

    Hi all, just checking in. Longest day ever. Arrived at 10 AM, waited a while, finally had stats and taken back to get blood drawn, but port was clogged, so now I have a lovely purple and blue spot on my forearm where they took blood for my numbers. They hook me up with some heparin to see if it will break up clog and send me on my way.

    Off to wait for my MO, and it is after 11 before she comes in. I have to say that she never rushes me. My WBC was only 7, so I'll have to have Neulasta again. She told me that 2 weeks after my last Taxol I will feel worse than I did today. At first, I was not happy, but then I realized that I generally did not feel too bad today, so if I'm incrementally feeling worse, that's ok. Good to know anyway. She made a note to get my deportation for the week of 8/10.

    Back to infusion center, and they still can't get a return on my port, so I have to have the clot drug and sit for 30 minutes while it works. It's after 12 PM now, so I don't get started on my meds until around 12:45. The Benedryl really knocked me out, I could barely get conscious when they finally administered Taxol at 1:45, they want to do it slow because of my reaction last time, so I do not complete it until 5:30 PM for a total of 6,5 hours. I was the last patient there.

    I slept a lot, so I figure I'd be wide awake now with the steroids, but I'm still feeling pretty sleepy. Weird how each one is different. I've had issues 3/7 times with my port now. That's a 42% issue rate, and while I don't regret having it, I think they should do something to make it better.

    Andrea, that sound horrible! How did your check in with the hospital go? Potassium, eh? It really makes you realize how this stuff fucks with your body. Geez - why now, right? Good you could see the silver sleeping bag lining of missing the storm!

    Renee - just want to say that it will get better! Sorry that you are feeling so crappy now, I do understand. Have you tried Prilosec for nausea? It really worked for me.

    Heather - great news on the scan, etc. results!

    Steph, what the heck??? I hope it's not infected. Except for getting blood and using it, I haven't had any issues with my port :-) Then, yesterday, I had this really deep pain start in the right side of my chest. It radiated up to my jaw, and the only thing I could think was that it must be the port, but then it went away. I figure I'm due - it seems like a lot of us have had issues, but you really can't catch a break! Happy Birthday - sorry it's being spent in the ER.

    Cherie - happy birthday to you too - I know it's two days early. What will you do to celebrate?

    ksusan, thanks for the chuckle, as always. I loved that song by The Firm.

    Lynne

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited July 2015

    Steph, did they figure out what's wrong with your port?

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  • ksusan
    ksusan Member Posts: 4,505
    edited July 2015

    Lynne, my port radiated pain up my jaw, FWIW.

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  • KBeee
    KBeee Member Posts: 5,109
    edited July 2015

    Lynne, Wow, what a long day! The port issues must be so frustrating! A WBC of 7...wow!!!! Mine is somewhere hovering around 3! Hoping your MO is wrong and that you don't feel worse next time!

    Renee, Vent away! We are here to listen. I hope your symptoms resolve soon.

    Dizz, Great news on the scans!!!!!!!!! Yahoooooo!

    Gingerchi, So glad you are able to get back on track now. I'll join you in the chair tomorrow.

    Stephmoen, oh no. :( You need to start catching some serious breaks. Uuugh. I hope there is no infection. Keep us posted. Thinking about you!!!

    Ksusan, Thanks for the rads updates. Keep em coming!

    Scarlett, How was the walk?

    Andrea, We must have been posting at the same time last time. In 2013 when I did TC, I was hospitalized for 4 days with a neutropenic fever and had labs, cultures and such another time because of fevers. Nothing ever found. I should have gone in on one other cycle, but ex MO just blew the fever off like everything else. No cause was ever found for the fevers. My personal opinion based on no medical info whatsoever is that it was my body's way of reacting to the inflammation caused by the Taxotere combined with low WBCs. I also got IV potassium that time. MO has allowed me to take a low dose potassium this time which has kept it at low-normal. Low potassium can wreck havoc on your body.

    I'll hit the chair tomorrow for Taxol #8! I'm liking these higher numbers!!! 2/3 done with Taxol tomorrow!!!!!!!!!!!!!!!!


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  • AndreaC
    AndreaC Member Posts: 220
    edited July 2015

    Kbeee, luckily I was not neutropenic. My WBC's were "normal" on Friday but the doctor from the ER I went to phoned today to say that my WBC is climbing up (I returned there to have bloodwork drawn again). But he said as long as I am feeling well there was no need for further treatment. I see the radiation oncologist in Victoria on Wednesday anyway and will tell her the whole sordid tale. At least my potassium is normal now.

    My body reacts to all kinds of things with weird fevers. After I gave birth to both my children I ended up with a high fever, no source of infection found. I decided that I was allergic to having kids - haha! I think that my body just rebels against chemo. At least that was my last one.

    Good luck to all who are having chemo this week...I think about you all every day.

    Andrea

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  • ksusan
    ksusan Member Posts: 4,505
    edited July 2015

    I'm glad your numbers are better, Andrea.

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  • Stephmoen
    Stephmoen Member Posts: 563
    edited July 2015

    yep pretty sure its infected giving me IvAntibiotics been stuck in ER for 8 hours it's terrible I'm considered septic might have to remove it tomorrow depending if swelling goes down and blood work dr said if we take it out it will postpone chemo I'm so depressed I could cry well actually I have :(

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  • GingerChi
    GingerChi Member Posts: 252
    edited July 2015

    I'm so sorry Steph! Hoping the Antibiotics work and you have a much better day today! I can relate to how you're feeling....when I was sick I was told my port may have to come out and it was scary and very upsetting. Sending up prayers for you!

    Hope your fevers go away Andrea! It's a good sign that your numbers are good!!

    Sorry for your long day Lynne....hope you got some rest last night!!

    Rpayton, hope you're feeling better today!

    Great news Dizz!!

    Woohoo on #8 kbee!!!! :))

    Thanks for the birthday wishes Lynne! I've already already been celebrating. Friends started early and I had a couple of dinners out over the weekend. If the day after treatment is like last time, I'll spend my actual birthday running back and forth to the bathroom. lol.

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  • ksusan
    ksusan Member Posts: 4,505
    edited July 2015

    Oh, so very sorry, Steph. May things go well for you today.

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  • Leighrh
    Leighrh Member Posts: 317
    edited July 2015

    Karen.... Just wanted you to know what a freaking rockstar you are.... I tried to run a mile yesterday at the gym.. it was even broken up into 400 meters at a time for 4 rounds... I could barely do it. It's something I could have pre-chemo blasted through!! You are my new hero!!!! You are kicking ass!! :) When I was running I kept telling myself.. KAREN did a 5K damn it...... LOL!!!

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  • Stephmoen
    Stephmoen Member Posts: 563
    edited July 2015

    it's official I have the worst luck ever with this cancer stuff port is coming out they tried drawing from it and it's filled with nasty infection all around it coming out at 5 or 6 pm todayhaven't eaten or slept in 24 hours but I guess that's the way it goes hoping all this horrible things happening to me now means when I'm done I will be done with this terrible disease forever

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  • ksusan
    ksusan Member Posts: 4,505
    edited July 2015

    I hope having the port out gives you immediate physical relief.

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  • Rpayton
    Rpayton Member Posts: 235
    edited July 2015

    Steph so sorry. Keep that positive outlook it will work out!

    Gingerchi Happy, happy birthday keep celebrating!

    Just hate this extreme fatigue, disoriented, out of breath feeling. I know it means I need to just sit rest, but so aggravating. Wanted to attend yoga this morn but didn't feel well enough to drive. Did do some stretching, meditation at home and helped greatly. Hmmmmmppph this too shall pass...

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited July 2015

    Oh Steph, I hope getting the port out makes you feel so much better and gives your body a chance to recover. You have been through the wringer, for sure. How many more chemo's are you supposed to have?

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  • KBeee
    KBeee Member Posts: 5,109
    edited July 2015

    Steph, how frustrating. Sorry you are dealing with that. I hope they get it out and get the infection cleared soon. I hope you are still feeling okay. You have had WAY more than your share of cmplications. Time for them to end!!!!

    Renee, I hope that feeling passes soon. Yuk. That sounds miserable.

    Leigh, I think I am just lucky that me hemoglobin is decent. Of course I've eaten so much red meat that my cholesterol is likely throug the roof!!!!!!!!!!

    Dizz, Happy Birthday!!!!!!!

    Gingerchi, Happy Birthday tomorrow!!!!!!!

    Andrea, Glad the blood counts are good.

    My port had been complication free. Today is the first time they had trouble getting blood from it. Port issues must be contagious. They finally were able to after some acrobatics and xtra saline and heparin. I told them if it does not work right, it is coming out. My veins are fine to use! Steroids and Aloxi going in now. Time to bounce off the walls for a while

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  • SueH58
    SueH58 Member Posts: 632
    edited July 2015

    Renee - I, too, hate that severe fatigue. It's unbelievable. I wish they'd just put me in a coma for those 24 hours or so. Hoping tomorrow will be a better day.

    Steph - thinking of you and hoping things improve quickly.

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  • Addie29
    Addie29 Member Posts: 307
    edited July 2015

    steph sending you luck and healing vibes. Hope you feel better soon.


    Wanted to share a photo with you fine ladies. This shirt was made special in support of my friend Jenny who's a 32 year old mother of 2 boys that finished chemo in December only to find out she's stage 4 2 months ago. You can find her on YouTube under Coopdizzle. She has given me so much advice and is always there for me to talk to when I need someone.image

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  • ksusan
    ksusan Member Posts: 4,505
    edited July 2015

    Thanks for sharing the shirt, Addie!

    image

    I might be a space cadet, but I thought I was Goofy, not Pluto!


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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited July 2015

    Addie, my heart breaks for your friend, but that is an awesome shirt!

    Ksusan, for a second there I thought the first picture was a picture of my butt. ;) Your head, on the other hand, is lovely. Well, so's my butt, but...well..ok this isn't coming out right. I have decided as soon as I have fuzz you can see, I'm gonna shave it into a ladyhawk. either on my butt or on my head. ;) at leas then it will look like I did it on purpose...

    HAPPY BIRTHDAY BIRTHDAY LADIES!!!!!! WISHING MANY MANY MORE!

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