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

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  • Fran2014
    Fran2014 Member Posts: 140
    edited May 2015


    Good Morning All,

    Hope those of you that went to "the bar" this week are holding up OK. Alibeths-hang in there girl-one step closer to the finish line!

    AnewBeginning- I did THP from Dec. thru Feb. (every 2 wks.) for 4 treatments prior to my surgery. I have to agree with your MO-it's  really not too bad. The fatigue and the total destruction of my taste buds (which did go back to normal after the treatments were completed) were the worst SE's. They did "steroid me up" which helped also. I was able to work the entire time and only needed a few days off after each cycle. I work in a school (as a school social worker) & made sure to use lots of hand sanitizer b/c I didn't want to get sick & luckily I was able to get through the entire course of treatment with no illnesses.

    gkodad-Thanks for the tea tips. I am planning on picking up some of your Teavana suggestions prior to my treatment next week. It is getting more and more difficult to find drinks that I find appealing to drink.

    ksusan- I enjoyed reading your post-sometimes it's so nice just to hear the "normal" things that bring us such happiness.

    OK well after some long thought & deliberation (with myself I may add!)-I've decided to head on down to Long Beach Island (NJ) for a 3 day girls getaway with 12 of my neighborhood girlfriends (we started this "post Mother's Day" weekend celebration 6 yrs. ago-no husbands/no kids!). At first I wasn't going to go (with my right eye still all red, itchy and puffy), my crazy high level of fatigue, no drinking alcohol & my inability to sit out in the sun for any long periods of time (b/c of the stupid eye/skin thing). THEN... I decided that if these are the moments that we should push through! This stupid disease shouldn't and won't define us or ruin "our moments"! So... yesterday I went out and bought tons of sunscreen, a little umbrella that attaches right onto my beach chair (who knew they made such a thing-found it in WalMart for $5.00!), a good book (The Orphan Train-which I just started but am already really enjoying) and OFF I GO to the beach today! Did I mention that this house is so cool-probably worth at least a million dollars (no I'm not kidding!)? It has 7 bedrooms, direct beach access and a huge deck overlooking the water (Since it's not yet "beach season" here at the Jersey Shore, the owner rents it to us for the 3 days for a very reasonable price). I hope those of you who are not feeling very well today are not cursing me out under your breath as you read this (trust me, I know when you feel like crap posts like these don't always make you feel so "happy"-I get it so don't feel bad). While this will be the most sober "girls getaway" I've ever been on, I'm trying to embrace the fact that I can go & hang out with my crazy group of friends who do bring me so much joy and laughter. I'm also going to try to block out the nagging thoughts of my impending "bar" trip next Weds. (which definitely isn't easy as I am truly dreading it).

    Wishing you all a wonderful weekend & many "push through" moments!

    Fran

     

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  • gkodad
    gkodad Member Posts: 188
    edited May 2015

    I enjoy reading the "normal" things you all are doing, especially on days when I'm not feeling so normal.  It keeps reminding me that things will get there.  It also helped a lot after Chemo 1 to read everything people had posted about activities, food, remedies, etc.  Chemo 2 is looking like it's going to follow the same pattern, so fingers crossed for some pretty good days in week 2. 

    Good tip on forehead thermometer...I thought I was through with hot flashes, but maybe not. 

    Hand sanitizer/moisturizer - I'm using Gold Bond Ultimate Hand sanitizer moisturizer.  I had to buy it online, but it's like lotion and doesn't dry out your hands the way ordinary sanitizers do.  I'll keep using it even after this as all over.

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

    Something the March thread is doing is posting introductions about their lives outside of cancer treatment--relationships, hobbies, jobs,history. Anyone up for doing that in April? It seems like it helps the group know each other more holistically.

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  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited May 2015

    littleblueflowers...it is weird...pepsi was the only thing I could drink at one point and it had to be pepsi with lemon, not coke. Couldn't even drink gingerale.

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  • Alibeths
    Alibeths Member Posts: 656
    edited May 2015

    imageI hate cold caps. And cancer. 😁

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  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited May 2015

    Alibeths...you look so pretty!! and young!! Good luck with your treatment, wishing you well.

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

    I'd iike to hear more about the cold cap experience--not the rationale, but how it is for different people.

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  • Alibeths
    Alibeths Member Posts: 656
    edited May 2015

    It's cold but it works.

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  • Karen30
    Karen30 Member Posts: 135
    edited May 2015

    off to the chemo spa today #3- each treatment seems to bring a new/different side effect- still after today 75% done with AC- I can't wait to celebrate 100% in 2 weeks. Positive thoughts to all in the spa today and hugs to everyone in the recuperation phase

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  • Alibeths
    Alibeths Member Posts: 656
    edited May 2015

    yay Karen. I'm here too!!!! What's after ac

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

    ksusan, that sounds like a great idea to get to know each other a little! Want to start us off?

    Allibeths, you look adorable...and have hair! I always wonder why I'm the only bald one at my infusion center...still don't know. Maybe everyone is wearing their wigs...

    hope everyone at the spa today is doing well, and everyone who has been this week already is hanging in there..

    Does anyone else feel nauseous when they even think of going to the chair? I'm sure at this point it's psychosomatic....

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

    Alibeths, Karen, and anyone else at the chemo bar for their cocktail today, hoping all goes well with relaxing days ahead and few side effects. One step closer...

    Fran, I hope you have an absolutely fabulous weekend!

    gkodad, Good tip on the straw. I struggle every day with what to drink; it varies every day what tastes good, but I do think a straw would help. As far as temps, it is hard to judge temperature sometimes with hot flashes...I keep temperature so I am comfortable...and that varies from minute to minute. I also tend to get low grade fevers after Neulasta (and anytime my counts are low) which makes it hard as well.

    Anewbeginning, Hope the next THP goes well.

    ankledolphin, if you don't get Neulasta, just keep close eye on your temp and report it immediately if it rises.

    Round 4 has definitely been the roughest so far. Thankfully, I do fine from about 6 am through 3 or 4 pm and that's when I start to feel horrible. I am grateful to make it through most of my day and be able to get stuff done at home and at work.

    I like ksusan's idea of getting to know each other. Here's the scoop on me. I grew up in northwestern NJ, in the mountains. I went to college at Penn State, which is where I met my husband. In high school and during college, I volunteered for my local ambulance squad. After I graduated from PSU, i stayed in the town for a couple years until DH finished his PhD. He got a job as a professor in Iowa, which is what landed us here. I was a middle school health teacher for 4 years when we first moved here, and I also was on the local fire department. Here, fire and EMS are both run by the FD. I stopped teaching when my son was 1, to stay home, and got my paramedic at the same time. I now have 3 kids, a son and 2 daughters. In a few weeks, their ages will be 15, 13, and 11. Our fire department has expanded and added station crews, so I work as a firefighter/paramedic there part time and also serve as the public education coordinator. I miss teaching, but love my current job and love that I still get to be in the schools teaching fire safety, first aid, etc. I enjoy running, biking, and gardening when not at work. I have a dog who is big and friendly, but not very smart. That's my simpleton life. Who's next???

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  • Addie29
    Addie29 Member Posts: 307
    edited May 2015

    I only actually took the Zofran twice. Had a horrible time with it. Gave me such a headache and made my heart race horribly. Not trying to scare you but make sure you are aware of how you feel after you take the drugs. Keep a list of side effects. I would start using biotene the night you took chemo. Keep your mouth moist as much as possible.

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

    How ya doin kbeee? Keep posting those round 4 symptoms please....I know it's different for everyone, but it sure helps to know what to look for! Hope u feel better soon and Taxol is kind to us all...

    So I love the idea of getting to know each other outside of tumor land! Here goes...

    Born and raised in Montana and the west. My husband and I met in college, when I showed up to class a month late and sat next to him. At my school, during bad fire seasons, they would allow students who were wild land firefighters and were on assignment when school started to show up late without penalty. I had been on a fire in California. We were both dirty and feral lol.

    After I got my masters in Archeology and he got his BA, we worked in Colorado for a while. I worked for Mesa Verde NP as an archeologist. He is a career helicopter based firefighter. We moved to Alaska for 3 years and had a blast in the rain forest. Then we moved back to Montana, and I worked for Glacier NP for 5 yeqrs while he ran a hel itack program in central MT. Glacier was amazing! I'm totally serious about taking whoever wants to go hiking there next summer!

    Now I work for the Forest Service as an archeologist and get to live with my husband! I love my job so much! We don't have kids yet, but are hoping to adopt once my treatment is over. We have two cat children and hope to get a dog soon. I've been doing a lot of work for FEMA lately, which I also love. I've worked on Hurricane Sandy and the MC 252 oil spill in the Gulf, most recently.

    In my real life, I love to trail run, garden, work out, cross country ski, and snowboard. I'm a county search and rescue volunteer and occasionally work as a fire dispatcher. Fitness is very important to me because when I go out on fires, I have to be able to hang with 18 yr old boys. Now I also love to embroider and crochet, and obsessively check this site. Guess that's about it for me....who's next?😊

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  • AndreaC
    AndreaC Member Posts: 220
    edited May 2015

    good day all!

    Lovely to see all the pics, read all the stories etc. This group is so amazing! Such a strong group of women.

    Day 15 post TC #1...my hair is coming out like crazy...I have bald patches on the top of my head and it is really thinning. I will have it shaved when I get a chance. Right now hubby and I are in Vancouver on our way home...we went to a U2 concert last night...AWESOME!! So nice to get away and forget about the C word for a while. And I'm hanging out with two of my best friends as well.

    I have a friend who has a couple of wigs she'll let me have till I get mine. :) Until then...I have started wearing scarves. I'm just happy that I feel well! That is, until my next chemo on the 21st...

    Have a great day everyone!

    Andrea

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

    Littleblue, you are like me and want to know what to expect! I totally get and respect that! Days 1 and 2 were no different from any of my previous infusions, except for a little bit of the big D. I think I had that going in though, so it likely had nothing to do with chemo. Day 3 yesterday was fine in the morning. I did stuff around the house and got some programming stuff done at work. Around the middle of my infusion (2:00ish) I started to feel pretty rotten...just more nausea, exhaustion, low BP, low grade fever, and started getting back spasms from Neulasta). I did drag myself out for a 3 mile walk, and get my kids picked up, but then I pretty much crashed on the couch all night. Thankfully, for me, evenings are worst and days are good. I woke up this morning feeling fine. I have kept up with Zofran and have not had nausea today. I did a school program for a couple hours this morning and did an hour of shopping for a lunch thing at the FD tomorrow. I just got back from a 4 mile walk, and I still feel good. I think I was probably more dehydrated yesterday than I should have been; I did not keep up on fluids well; if I had, I might have felt better. So far, I do not feel at all like yesterday, so I am hoping I can feel good a bit longer today and that my days will be good all weekend. I can take a couple of bad evenings. I have always felt pretty much back to normal by Sunday, so iI am looking forward to the AC side effects being in my rearview mirror for good hear really, really soon!

    Andrea, Glad you enjoyed the concert. I love bits of normalcy in all of this!!! I am a U2 fan too!

    Addie, Zofran can cause headaches. Hopefully they found something that works for you that you can tolerate.

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  • Rpayton
    Rpayton Member Posts: 235
    edited May 2015


    About me, Renee:  I'm 49, have always lived in a small town 60 miles west of Chicago, Northern IL.  Married my senior high school sweetie and we have been together for 30+ years.  That man is my rock and there is no way I would be alive through some of the things a teenage boy can put a mom through, right?! LOL My son is now 21, a huge supporter for me, handsome as heck, sensitive, compassionate and showing a great deal of common sense compared to others in his age group. I'd like to say it comes from me and my husband but, in all honestly, our children are really their own person and we need to sit back and just admire the beauty of them and their growth. After a long, very successful 20-year career in sales and marketing, I needed something more meaningful and found my calling in healthcare.  At age 40 went back to school for medical admin and then onto more of a clinical position as a medical assistant/CNA.  I love, love, love connecting with patients. I have worked almost 10 years now having been in both internal medicine and also in family medicine. A true joy to help people daily and feel like you might have made someone smile today or helped them with one area of their life that day. In my 20's I would have passed out at the sight or thought of blood. LOL Funny how we grow, adapt, change and thrive in things we never thought possible and that is living. Never say never... I also love good crime, suspenseful fiction, James Patterson, my favorite and have read every book. I crochet, not so much that I'm any good, but it is hugely meditative and keeps my hands and mind counting instead of worrying. I have an art background and also go right brained and pull out watercolors, draw, color pencils, whenever the desire strikes. I'm 100% Italian and love to eat and cook, but mostly bake! I have the family sweet tooth and love desserts. I also have a sassy, sarcastic sense of humor and appreciate that quality if you have it too. :-)

    All of you headed into next treatment, be well and hang in there. I'm a week post 2nd and this one definitely hit with more side effects or maybe my reaction/thinking is not in the best spot this week.  I am craving potatoes, pasta, bread and carbs, even though I can't really taste them. Maybe it's the comfort I'm wanting. LOL I need to start making more time for me and doing things for me, I have found.  It's a full-time job in itself keeping up with symptoms, meds, medical appointments, medical bill deciphering, exercise, eat properly, and positive meditation, isn't it?! Oh, and then try to work full time and make sure you don't look like you can't handle it because you can't be weak and don't want your coworkers talking about you and planning your replacement. So much for working in the healthcare field thinking you might have more compassion, NOT! :-) LOL Those of you with little kids, oh my, I hope you have tremendous support at home, a team of cheerleaders, and can take this time to really be with them and just take care of you. And it will get better for all of us. Thanks for sharing here and letting me vent here too!

     

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  • lovlilynne
    lovlilynne Member Posts: 405
    edited May 2015

    Hi - I got the sore mouth. It's not like what I thought it would be with canker sores, it's more like the side of my tongue is burnt. I can't even drink without it hurting. I have to admit that I wasn't as diligent with the rinsing after #2 as I was with #1. But, I have been since my mouth started feeling weird, but it's not getting any better. Is there anything else that I can do? This sucks, and it was one of my "please do not let me get" side effects. I stupidly thought I was ok since I got through #1 with no problem.

    Lynne

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  • Rpayton
    Rpayton Member Posts: 235
    edited May 2015


    Lynne, try the baking soda, water and salt swish. Biotene helps greatly too.  And there is also something called magic mouthwash that I believe is prescribed by your Dr. Anyone else heard or used magic mouthwash?

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  • lovlilynne
    lovlilynne Member Posts: 405
    edited May 2015

    Yeah, Renee, that's what I mean by the rinsing - I've been rinsing with the bs and water and sometimes the biotene. It's not getting better.

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  • mysunshine48
    mysunshine48 Member Posts: 1,480
    edited May 2015

    Yes, my MO gave me a RX for magic mouthwash. I know CVS makes it. My RX is on "hold" because they told me they mix it at the time you pick it up since it is only good for 14 days. Then you need a new RX.

    Hope this helps!

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

    lynne, I'm so sorry the mouth crud got You! I've been dealing with it since about day 4...even my throat is raw. My MO said it's mucositis and gave me the same prescription for magic mouthwash. I haven't used it because he said it wouldn't help it heal, just dull the pain. What has helped is gargling with baking soda and salt like 4 times an hour. Anything to keep it from getting infected, because he said if it didn't heal it would delay treatment. It's even got my Eustace an tube swollen up.

    Today, it seems to be getting better. I've added gargling and drinking very diluted apple cider vinegar to the mix. Figure it works on regular sunburns, it might work on chemical burns as well. Plus it will keep thrush confused and hopefully at bay. It seems to sting at first, then sooth. I may add tea tree oil tomorrow...didn't want that on open wounds! Hope u feel better soon!

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  • AndreaC
    AndreaC Member Posts: 220
    edited May 2015

    Rpayton - my oncologist prescribes "miracle mouthwash" - same as magic mouthwash, I think. I haven't tried it but think I will ask for a prescription when I see him on Tuesday. I did find that baking soda and water (no salt) helped me a lot. Weird how much chemo affects the mouth. Things taste differently, plus there is the pain, sensitivity etc. My mouth bothered me just for the first week after my first chemo, it feels fine now. It will be most interesting to see how #2 differs.

    Andrea

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

    At the first sign of anything that looks or feels like candida, I have swished around a live active culture yogurt or kefir mixed with water in my mouth (while continuing frequent brushing with a soft-bristle brush softened further with hot water, warm water/baking soda/salt swish, Biotene. Full strength yogurt on/in... other areas.

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  • thsizit7
    thsizit7 Member Posts: 35
    edited May 2015

    Hope everyone is doing well today!

    To all of you who have small children, teenagers, those of you who are still working...I can't even imagine...you are all SuperWomen in my eyes!

    Fran - you go on that girls trip and have a blast! You deserve it! My oncologist told me I could still drink my red wine, just not every day or too much!

    My pics...with my daughters on Mothers Day, my buzzed head, my Wig...I have had a hard time adding these pics. Hope they didn't post multiple times!😱

    imageimage

    image

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

    ksusan, what are the signs of mouth thrush? It seems so similar to mucositis...

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  • SueH58
    SueH58 Member Posts: 632
    edited May 2015

    I too have enjoyed club soda with lemon. But I'm making some infused water with cucumber and mint. That is more refreshing than plain water. I know I didn't drink enough today. Gotta pick up the pace so I'm well hydrated for next Wednesday's infusion.

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

    Oral thrush: http://www.mayoclinic.org/diseases-conditions/oral...

    Oral mucositis: http://www.nlm.nih.gov/medlineplus/ency/patientins...

    At a glance, I'd say white stuff on your tongue may be a sign of yeast (thrush), and sores might be mucositis. I assume your doc knows the difference. I'm fortunate not to have either, but having had friends with AIDS who couldn't eat from thrush, and having some signs of an early yeast infection on the radar, I'm trying to be proactive (or at least, probiotic). I'm sorry you're having so many SEs, poor thing.

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

    Thanks, ksusan! Great references, both look nasty. I'm gonna add swishing yogurt like you suggest just in case my MO is wrong....or Braggs apple cider vinigar....chemo is awesome! I love chemo! Gimme more chemo! Ugh...

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  • Addie29
    Addie29 Member Posts: 307
    edited May 2015

    actually my mo just told me to stop taking it if I could. He also lowered my doses of dethrometasone to only 4mg because all the steroids were making my heart race horribly. And lowering the dose has really helped me. I am fortunate and don't really get too nauseous. The one side effect that I'm having now is my mouth is completely raw. I went from having thrush to a raw mouth. I hate it. I just recently shaved my head last week and it has devistated me. I am only 29 with 3 young kids so appearance is a big thing to me. I go in for my 3rd a/c treatment on the 19th and I'm praying that it's as good to me as it was the last one.

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