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

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

    Rockerwife, sending you good thoughts.

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  • melb44
    melb44 Member Posts: 130
    edited April 2015

    Thinking of you Rockerwife! Hope you are doing better.

    Scheduled for my port and lymph node biopsy for sometime late afternoon on Monday. I hate how you can't eat anything after midnight. I am going to be hangry by then or maybe not. I have been so stressed out about everything that I am not even hungry.

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  • Rockerwife
    Rockerwife Member Posts: 63
    edited April 2015

    Thanks for the good vibes ladies, however they ended up admitting me for neutropenic fever. WBC were 80 and 500 Is considered normal . I have some sort of throat infection and it is so frigin painful to swallow. They are throwing everything at it, since they are still waiting on some jabs and cultures . On two different iv antibiotics.They even gave me Tamiflu. Encase you are wondering , I never had the Nuelasta. Why do these Oncs play Russian Roulet with our bodies. I know the shot isn't always successful, but they wait until we get hospitalized to do it the next cycle . I don't even know if he will even give it? Have all my sisters who received the shot stayed out of the hospital ?

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  • melb44
    melb44 Member Posts: 130
    edited April 2015

    I am so sorry Rockerwife. I wonder why they didn't give you the Nuelasta. My ONC acted like that is standard procedure. Hope that the antibotics help you quickly.

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  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited April 2015

    Rpckerwife...hope you start to feel better soon. Sorry you have to go through this...I got the shot the day after all four of my treatments..wonder what the reason was they you didn't get the shots.

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  • slv58
    slv58 Member Posts: 1,216
    edited April 2015

    Rockerwife I hope you rebound quickly! The first time around I gave myself a neulasta shot the day after infusion and didn't have any problems with blood counts. This time around I'm not sure, I meet with mo on tues to get all the info and sign consent. I'm almost at my lifetime limit on our insurance so I don't think I'll be getting neulasta if needed.

    I get my picc line on wed morning then chemo. I had a picc line last time and was fine with it. It's a bit of a hassle having to keep it dry when showering but I had a routine with a large freezer bag and two tourniquet with Velcro sewn on! I may purchase a proper sleeve this time- just trying to research the different ones on market. Did anyone use one and can offer their opinion?


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  • ankledolphin
    ankledolphin Member Posts: 99
    edited April 2015

    hey there.....haven't posted in a while, but have just been browsing the comments....

    is anyone not getting a wig? I have only had 1 treatment and by the end of the day I don't expect to have any hair left....thinking of getting it shaved at lunch time today...but i don't have a wig, just a hat....i wear my hair in a ponytail every day or the sides pulled up since it was all one length, right below my shoulders since right before xmas i evened it out by having over 8 inches cut off. I just dont get my hair done, and this to me is the worse side affect of them all. :(


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  • lovlilynne
    lovlilynne Member Posts: 405
    edited April 2015

    Lisa, I'm so sorry that you ended up in the hospital. Throat infections are the worst! I am hardly ever sick, but last time I was it was with strep, and I felt horrible - that razorblades on your throat feeling when you swallow, plus the fever makes you feel like crap, and your sleep is all messed up. Regarding the nuelasta, I had originally read that it was given whenever someone had dose-dense regime. Then, reading the DB, it seems like sometimes they don't use if based on age??

    Melissa, I'm not planning on getting a wig. I just cannot see myself bothering with it, and I have heard some comment that it's hot or itchy. I always have styled my hair, but the last decade or so have found what works for me, and it's always been very low-maintenance. My hair is very fine and thin, so it always was quick to blow dry - maybe 5 minutes at most. So, I'm not used to spending lots of time on it. However, the trainer did give me a prescription for a wig, and I was thinking it might be fun to go try some on with my daughters - I was thinking that they might find that helpful in processing what mom is going to look like. If insurance pays, I wouldn't mind having one around for the occasional 1-2 hour event.

    It's interesting - both the MO and the "teacher" stressed having a plan for the hair loss - be ready with wig, hat, etc., but also how your family wants to handle it (like, if your kid is bringing a friend over - is it ok if mom is "commando" or do you need to cover up,etc.).

    Lynne

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  • Karen30
    Karen30 Member Posts: 135
    edited April 2015

    Lisa poor you this sounds awful- hope you feel better soon!!!

    Lynne I've been thinking about the whole hair deal a lot- I just cannot see myself going commando but we will see I guess- when I initially shared my diagnosis with my middle son who is almost 21 his comment was " oh mom you will lose your hair, don't worry I'll buy you a pretty bandana" all I could do was laugh- you gotta luv em right!!

    I am terrible with names so ladies please forgive me - it's going to take a while for me to remember everyone - but I hope you all have a wonderful Friday and Minimal SE weekend - I'm off to my first "spa" apt - meeting my friend the "C gobbler" there


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  • greenae
    greenae Member Posts: 540
    edited April 2015

    hi all

    Rockerwife, please feel better soon! I dont kno why they wdnt have given u Neulasta. I had 2nd infusion yesterday and my MO said I could be poster child for good counts, and just had a few hours of bone pain from the neulasta, relieved by motrin 600mg (Run on sentences because I am high on steroids . Yikes!)

    Shari, happy and sad to see you here. I hope they get it right and you knock the nasty cells right out of there! I hope ur feeling better post Diep. I would love hear about the surgery. Not sure implant or Diep for me? I still dont kno what recon I will have this summer. Have the Te in left and DDDD healthy due for redux on right. Very lopsided and bald. Fun, fun fun.

    To all having lousy SEs, i hope u feel better soon I kno i have one more day before i crash... Saying hi from the chemo bar... Hugs to all!

    Arleneimage

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  • sheshe3
    sheshe3 Member Posts: 70
    edited April 2015

    Ankledolphin, I am getting a wig, but just for those occasions when I feel the need to look a bit more "put together". I have some cute hats and plan to add to that collection as I go..... much more comfortable IMHO. I was hoping to have my wig by today since I am going to school plays tonight and tomorrow night. Hmmm... looks like I'll be wearing a hat since my on ord wig won't arrive until Tuesday. My hair is thinner this morning than I was hoping it would be, so I am thinking it gets shaved today. I would say do what works for you. If you don't want a wig, just get hats, or if you don't like them either go commando. It's your decision and you need to do what is going to make you feel comfortable and happy with your look. It sucks that on top of all we are dealing with that we have to deal with baldness too.

    Rockerwife, I hope you are feeling better this morning and that you are able to add neulasta to your regimen. So sorry you have to be in the hospital!

    Slv58 welcome to this board. There's lots of good info and plenty of compassion, so make yourself at home. Looks like maybe we can learn from you too... I've never heard of metaplastic cancer, but just looked it up. Have you considered seeking a clinical trial? Just a thought. Hoping all cancer killing mojo as you begin your tx.

    Sheila

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  • Karen30
    Karen30 Member Posts: 135
    edited April 2015

    Arlene you look so good !!! Hope I can look half that good!!

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  • AnewBeginning
    AnewBeginning Member Posts: 536
    edited April 2015

    Hi all

    Had my first chemo Wednesday April 15. It didn't start our great I wound up being there 9 hours in total. Started out with seeing MO first at 10a

    then for blood which showed my platelets to be 79 and was told they could not do chemo unless it was 101. Ok so they had me sit and about 1 hr later

    they said they were going to redo the bloodwork. They did and now it came back being 101 and they would now do the chemo.

    I didnt know much about platelets but I didnt think it was

    something that could change so rapidly so and I wanted to be sure my platelets were up so I asked for copies of both tests. They explained

    that the first test may have had clumped platelets together. So my chemo didnt start until 4pm and lasted 3 hours. The access to my port was easy

    and the tx went smooth. So far s/e are just about a little tired or weak and a bit of shortness of breath but nothing to complain about. No nausea

    to speak of but am taking the compazine. Appetite is good so far. I got to take my Neulasta shot Thursday and am taking Claritin ...so far no pain but

    I dont know when that would start if ever. So far Im ok and I hope to stay this way..........fingers crossed here.

    (((hugs)))



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  • slv58
    slv58 Member Posts: 1,216
    edited April 2015

    Thank you sheshe, I know how great these monthly groups are and I'm happy to be joining this one!

    Arlene, you look fabulous! How are you feelin? May I ask where you hot your wig, it looks so natural and gorgeous on you!!

    Recovery was really slow in the beginning but at one month there was a huge difference! When making my DH lunch, I suddenly realized I was standing straight! Bending down has been improving steadily so I can slowly pick things up from the floor (amazing how many things you drop!) I was using Vaseline to keep scars soft as per plastic surgeons advice but thought I'd try my emu oil that I used (with fabulous results) for radiation and I can't believe the difference! After two days my scars look so much better and much of the redness is gone- I highly recommend.

    I'm very pleased with the look of my new breast. However this isn't my main concern right now, I just want to beat this!

    I would highly recommend diep, just as long as you accept that recovery is long and sometimes frustrating. Your breast is warm and soft just like a natural. I will need revisional to reduce and lift my other- just hoping I make it there.

    AnewBeginning, I found my bone pain started exactly 2 days post chemo- almost to the hour! I did experience very bad pain that even oral morphine couldn't touch but I think my SE were extreme. My last docetaxel infusion, I thought about trying a heating pad on my thighs and surprisingly it helped, if you find you get bone pain, maybe try this.

    Hugs to all

    Shari

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  • melb44
    melb44 Member Posts: 130
    edited April 2015

    Denise (Raisemeup) and Cherie (Starrgirl) - I see you are both in Michigan. Me too. Where is Mi? I am in Troy.

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  • starrgirl
    starrgirl Member Posts: 8
    edited April 2015

    Melb44........I'm just north of Kalamazoo in Plainwell. 

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

    Shari, Welcome! Sorry you have to be here. This is my second time through chemo as well. I have a port instead of a picc line.

    AJ, Hoping you get through with few side effects and continue to feel good. I am glad they repeated the platelets test.

    Arlene, You look fabulous!

    Karen, Hoping all goes well at chemo spa today. I always call it the chemo bar where I get my cocktail...which is odd since I almost never drink! Wishing you an easy time this round.

    Lynne, Whatever works for you as far as the hair...go for it. I went through it in the fall last time...summer will be much different. I will definitely try to get a copy of that book. Thanks for the recommendation! I work really flexible hours and have cut back, so don't be in awe of anything. I just have been pretty lucky with the SEs so far. I know the other shoe will drop eventually. I walk every day because it is my sanity saver.

    ankle dolphin, the hair loss is hard, and whether you like buffs, hats, skullcaps, wigs, scarves, is up to you. Whatever works, go with it. Last time I wore my wig all the time. I do love my wig and wear it to kids' events, but it is too hot on my daily walks. Today was my first day in just a ballcap. Thankfully the earth did not open up and swallow me whole. I was nervous going out with just a cap on.

    Rockerwife, I was admitted during TC for a neutropenic fever because my (ex)MO "wanted to see how I'd do" without neulasta since I was young and healthy. It burns me up how they are willing to gamble with our lives like that. I hope you are getting Neupogen and that your counts rise soon so you can kick that infection and get home. So sorry you are in the hospital.

    Positive spirit, I hope you are feeling better today.

    Vanmama, Hope the CMF goes much better for you.




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  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited April 2015

    KBeee, the other day was sunny so I wanted to go walk at the beach. I drove in with my shoulder length blonde hair. A couple walked past my car so I waited and when they weren't looking I pulled off the wig to walk topless so to speak. I passed the same couple on the path, and I got a double double take look from them. I smiled and laughed..........have a great day!

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  • GingerChi
    GingerChi Member Posts: 252
    edited April 2015

    I'm on day 5 since my 1st treatment.... I've had a pretty good week considering...I'm very tired, but make myself get out and about every day. I even mowed the lawn yesterday...on a rider that is. lol It actually felt good to be outdoors and moving a bit more. My back is achy, as is my abdomen. Not really hungry but can eat, trying to eat small meals throughout the day. I got my hair cut shorter yesterday...its not coming out yet but the texture and color look weird. I have a wig but had to order it from swatches and am not totally happy with the color..its a bit too dark...my skin is kinda blotchy now and the wig color makes it more noticeable IMO.

    starrgirl, my name is Cherie too, how cool! There's not many of us around...with that spelling anyway!!! :)

    rockerwife, so sorry you are in the hospital!! I hope you are soon better and back home! I'm a week behind you in treatment, I got the Nuelasta shot on Tuesday,

    Lynne, so glad everything worked out well, but it sounds like a scary and LONG day you had. There are heart issues in my family too (no cancer tho! lol) so I understand your concerns there. I was surprised when the results of my echo came back really good!

    stephmoen, I'm HER2+ (I'm ER+ and PR+ too) and my treatment is bi-weekly AC for 4 treatments, then 12 weeks of Taxol + Herceptin (and Perjeta if my insurance will approve it), After that, Herceptin for a year. I will also be on hormone inhibitors for 5 yrs or more.

    Arlene, you look fabulous!!

    I hope the weekend brings healing and few SE for us all!! :))

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  • allicat1214
    allicat1214 Member Posts: 84
    edited April 2015

    Hi everyone. Welcome to the new ladies. Wish all the rest of us, minimal SEs!

    Rockerwife. I did get the neulasta shot and still ended up in ER with 102 fever!

    My docs never found a reason for the fever, even after running a ton of labs and giving me two different IV antibiotics as well.

    When my MO visited me on the second day, he said they weren't sure if my WB count was going up or down yet. That was day 5 after chemo. When the hospital's onc team came by to say they were discharging me and asked if I had any questions, I asked if they knew my WB count was trending up or down. He said down.

    So they discharged me even tho count was down because I went without fever for 24 hours.

    I think I discovered what may have led to my fever. I'm not a doctor but I observed this when I got home.

    I was discharged around noon. I actually had diarrhea and vomited after I got home. I didn't drink a lot because I was afraid it would cause me to throw up more. I took my temp around 9 pm and it was 100.4! I was so upset because I didn't want to go back to ER that night. I googled how to lower temps without drugs and found to hydrate! A light bulb went off. When I first got to ER, the nurse couldn't get ANY blood from my port because I was too dehydrated! She had to put a tight tournaquet around my foott and had to draw from a vein in my foot!

    So, I drank room temp Gatorade and checked a half hour later and it was down to 100.1. Drank more and checked again and it was down to 99.9. So I have been really committed to staying hydrated ever since and my fever hasn't gotten above 100!

    So, for me staying hydrated is key to keeping fever down.

    Again, I'm NOT a doctor and I know it's important to call if you have a fever over 100.4. I just wanted to share with others that one way of keeping fever down is to stay hydrated!

    Good luck everyone!

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

    Good wishes and healing energy to those in the hospital or feeling poorly. My heart goes out to you!

    Arlene, great photo!

    I still have my hair 15 days out but when it goes I won't be wearing a wig. I have a couple of bandana-y caps, and everyone at work is used to my buzz cut. My students are eagerly awaiting my Kojak imitation :)

    I'm on 4 TCs and getting Neulasta, for what it's worth.

    My port site still aches sometimes, but my surgeon remains unconcerned: "It's a foreign object, and your body doesn't like that." He re-checked the hole at the end of my incision, which is still open and discharging slightly. He still sees it as an abscess from the end of the internal suture and as long as I keep it clean, with a dressing, and watch for infection, he's happy to leave it alone, as am I.

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  • StacyMc329
    StacyMc329 Member Posts: 48
    edited April 2015

    I'm at 17 days from first treatment and the hairs starting to go now. I'm afraid to touch it. Guess I'll have to use the clippers now. Not looking forward to it.

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  • Stephmoen
    Stephmoen Member Posts: 563
    edited April 2015

    I had my first chemo infusion yesterday and I have to say I'm feeling great! Trying not to get too excited I heard day 2 and 3 can be pretty rough but so far so good drinking lots of fluids and taking my zofran trying to decide if I should take a compazine now had a zofran last night and this morning fingers crossed I will be feeling ok for my sisters baby shower tomorrow!

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

    Arlene you look great!

    Ladies who are wondering about wigs...American Cancer Society will donate a brand new wig of your choice to you free of charge if your insurance won't pay for a nice one...not sure of their phone number but it's on their website, and they are so helpful and amazing! They have all kinds of other resources available as well, even social worker oncologists for counseling for you or your family members. If there is anything at all you need help with, they are a gold mine of resources and ideas!

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

    Would anyone be offended if I ask about sex during chemo? Is it safe? I mean....cell death, slow healing, messed up mucous membranes...sorry if that's tmi! I did ask my nurse, and she said it was fine as long as you wa it 48 hrs after infusion...but of course I'd like to hear from our group if any one is willing to venture an oppinion! Mostly since I'm pretty sure my nurse has never actually been in the chemo chair....not sure I trust her oppinion!

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

    Littleblue, I think it's fine as long as you use a condom during the past few days. I haven't had the energy to think about that...and hubby has been out of town all week anyway.

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  • mamajencoz
    mamajencoz Member Posts: 52
    edited April 2015

    I'm only HER2+. I'm getting ACTH. Ac for 4 treatments. The taxol+ herceptin for 12 weeks then just herceptin for the rest of a year

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  • Positive_spirit
    Positive_spirit Member Posts: 218
    edited April 2015

    Rockerwife - thinking about you! Hope everything resolves quickly.

    slv58 - so glad you found this group. sorry that you have to find yourself fighting this battle again.

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

    Thanks kbeee! Yeah I'm not sure I feel up to it either...just trying to gather data befor hand!

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  • Karen30
    Karen30 Member Posts: 135
    edited April 2015

    survived first AC so yay I down 3 to go - then I change to taxol- also got my neulesta shot - so far feeling ok but I will take my zofran and decadron as instructed - I also have Ativan and compazine in case- hopefully I don't need them we will see- I was amazed at the red urine immediately after A - good thing they warned me!

    I hear you about worrying your hair is about to fall out- I'm due to get mine cut off and wig made on May 1 st - I'm just praying it doesn't just fall out before then!

    Happy Friday evening ladies it's going to be early night for me !!!

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