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

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  • SueH58
    SueH58 Member Posts: 632
    edited June 2015

    Addie, did you test positive for BRCA (this the hysterectomy)?

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

    Ok not quite 24 hrs post taxol 1, and feeling darn good! Slept well, got up at 0630, made a quiche and cleaned the kitchen. Diahreah seems to have taken a hike, and no nausea like on AC. Still bumping the carafate and prilosec. Eyes and face a little puffy...steroids? Or Tree sap? Don't know. Water aversion seems to have lifted too. Heading in for neulasta here in a few hours, then we shall see. I have heard the pain is usually the worst from the taxol 3 days out? So far, though, way better than AC. Got a new wig just for fun, and two really cool sun hoods for wearing under hats. Gonna try to go to farmers market on the way home from neulasta. Ladies, Don't fear the tree man! I'm beginning to think my barfathon was food poisoning from a Hardee's milkshake.

    Addie, how ya doing sister?

    CONGRATS KSUSAN! DONT FORGET US!

    BAT, welcome! We are a bunch of tough sisters here, and we will take good care of your wife and you!

    Thanks again for the encouragement, ladies! Hope everyone is having a good weekend!


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

    Yay, littleblue! Don't overdo it!

    For me, taxotere + Neulasta tends to increase edema initially, cause the most bone pain 3 days out from the shot, and then get better over about 10-14 days. A little under the weather at 10-21 days, sometimes with aching follicles. Taxol might be an easier run than that.

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  • Karen30
    Karen30 Member Posts: 135
    edited June 2015

    ladies I need your help- AC 4 has really done a number on me - the worst part is this incredible pain in my lower GI area - I am taking ibuprofen every 4-6 hours and have tried both Vicodin and Percocet - also lidocaine jel nothing really helps - a bowel movement is like passing glass excruciating - it's been 3 days of this now and I keep hoping it will settle but so far nothing- has anyone else experienced this intense nerve like pain in the rear end and if so what helped- I'm quite desperate

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  • gkodad
    gkodad Member Posts: 188
    edited June 2015

    Karen30, talk to your doctor right away.    I also have intense abdominal cramping, diarrhea, rear end pain and gastrointestinal involvement with A/C.   But nothing requiring the kind of painkiller you are needing, so that can't be right.   I've been told to call if the pain becomes suddenly severe. 

    They've increased my Pepcid A/C to maximum strength (20 mgs) and twice a day if necessary, and that seems to be helping with the stomach cramps, and severe gas.  I was told no carbonated beverages.   I'm using medicated wipes in lieu of toilet paper for the rear end.    

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  • gkodad
    gkodad Member Posts: 188
    edited June 2015

    Last A/C scheduled for next Thursday, if my WBCs comes up.   Then I have to make a decision on Taxol - Dr wants dose dense but my decision, oncology nurse says not disagreeing with doctor but weekly is much easier to tolerate.    Both say 4 dose dense vs 12 weekly are equally effective statistically.

    Since my WBCs have crashed 3 out of 3 times on A/C with neulasta, and likely  will again with A/C 4, how are people doing on WBCs on weekly without neulasta?    I need a regime that gives me a few days of semi-normal life between sessions, since right now I have about 7-8 days of SEs and another 2-3 days of grade 3-4 neutropenia with milder SEs {so far with no fever but required home isolation} with maybe  3 days of borderline normalcy before the next infusion.

     

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  • lovlilynne
    lovlilynne Member Posts: 405
    edited June 2015

    Hi ladies, happy Saturday.

    gkodad - sending you warm, healing thoughts. I feel awful for what you have to go through. All our SE are on a scale from bad to worse, and when I hear how more difficult it is for some, I really, really send my sympathy. I hate the 2+ days of feeling sick, but at least my body does turn a corner and start to have normal times.

    I haven't started Taxol, but FYIW, my doctor wanted to do the 12 weekly regime, but I wanted to go with the dose dense. She says that's how they have 99% of the patients. Maybe KB, Jen, or others can correct me if I'm wrong, but I believe the Taxol is not as hard on the WBC.

    So, except for Stacy, it seems like those who have moved on to Taxol are finding it easier? The only thing is, like in Jen's case, I was ok after AC and 2nd day, it's always 3rd and 4th day it hits me anyway, so I guess I would expect the same from Taxol? I just hope that day 3 and 4 is not as bad as it has been with AC - some of which I attribute to the Neulasta. I don't know if it's a timing thing because I take the Neulasta at the end of day 2, so I'm going to start feeling crappy anyway, but it also coincides with the shot, or if the shot increases all the SE - fluish, body ache, queasy, headache, shaky, and so TIRED. I have to have my 2nd Taxol when I'm on vacation, and if my day 3 and 4 are going to be like that, I may as well stay home those days, it would be so depressing to be at the beach and stuck in bed all day.

    Today I'm trying to use what energy I have in rearranging the mattress on our futon to my DD2's room and replace the futon mattress so that when my SIL and niece come in a couple weeks they'll have a decent mattress to sleep on. It's wearing me out!

    Lynne

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  • Rockerwife
    Rockerwife Member Posts: 63
    edited June 2015

    Please tell me if I am over reacting. While in the grocery store a little bit ago my son (10) points out a lady that is very obviously on chemo. She even had a mask. So, I said okay thank you I see her. Then what really pissed me off is about a fewsec later my husband directs my attention to her. I was so mad that I told them that was disrespectful and just as bad as pointing out someone with a missing limb. I think what is eating at me is the disrespect and I wouldn't want people pointing me out? I am still irritated! Am I crazy to feel like this?

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

    Rockerwife, I would have been livid!!!!! Last time around I never went to the store without a stocking cap (it was cold out) or my wig just fro that reason. This time with it being so hot, I often just wear a ball cap. I hate that people probably are staring or pointing things out like that. I much prefer to just blend in.

    Lynne, Taxol's bad days are also 3 and 4, but they are not as bad as AC...at least not for me.

    gko dad, I will keep you posted on my counts. I was excited when I saw MO last week and my white counts came up between rounds 1 and 2 of Taxol. He told me that I was in the "honeymoon" period. They have recovered from AC, but not hit the Taxol nadir (low point) of 20-21 days. He said they'll be good for a few weeks and then likely fall. If they get too low, they can use Neupogen. My MO has always been upfront, honest, and spot on about side effects...which I appreciate. (With my former MO, that was not the case). Here are my days on weekly Taxol...understanding that I have only had 2 rounds, and likely it'll get harder later... Day 1:feel fine, a little tired when I first get home due to Benedryl; I usually cannot sleep at night due to steroids. Day 2: I feel fine. Day 3: A bit more tired. Mild bone aches occasionally. Day 4: More tired. More bone aches, but it is sporatic and I have never even had to take a Tylenol...never even thought of taking one. Days 5-7: Fine, other than general chemo fatigue. My taste is a little "off", but not too bad. My hemoglobin has continued to drop. MO expects it to drop fo r2-3 more weeks nad then stabilize and gradually come up.

    Karen30: That definitely warrants a call to the doc, even over the weekend. The only time I felt the "glass" feeling was back in 2013 on chemo and I had developed a fissure secondary probably to a yesat infection and digestive issues combined. My Mo at the time did nothing so my OB wrote a script for a creme which was a steroid/antifungal. It cleared it up within a day. I saw her for routine appointment (scheduled months earler) just before chemo this time and she wrote me another one just in case. I have used it occasionally and it's helped. That may help with feeling like you are passing glass, but it would not address the abdominal pain. You need to make sure you do not have a blockage. Sorry you are going through that. Keep us posted on how you're doing.

    Littleblue, Glad the GI issues are clearing up; hopefully it was an ill-timed stomach bug. I hope the edema goes away too.

    After 2 years with my dinosaur iPhone 4, I finally got rid of it and upgraded to the 21st century. Chemo this week will be spent learning how to use it. I am a technological moron, so if I am at teh chemo bar, it should keep me from hurling it across the room in frustration when things don't go my way.



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  • Karen30
    Karen30 Member Posts: 135
    edited June 2015

    Thanks ladies- I called and spoke to the on call MO who organized a prescription for oxycodone- he did not seem concerned and felt it was just a miserable side effect. He seemed more worried about the ibuprofen and Tylenol I have been taking - so I guess I will try the oxycodone and see how it goes.

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  • Addie29
    Addie29 Member Posts: 307
    edited June 2015

    Sueh58 I did test positive for brca2.


    And littleblueflowers I'm glad you're doing okay. I'm hoping that my first taxol will also be kind to me. I know ac has been hit or miss. The 1st and 3rd dose of ac really did me in. The 2nd and 4th weren't as bad. Usually I suffer from horrible body aches and that only last about 2 days

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  • Addie29
    Addie29 Member Posts: 307
    edited June 2015

    ugh these steroids give me such a weird feeling stomach. I feel hungry but then again I feel full. It's such a weird feeling. Also my eyes won't stop watering. Is it bed time yet? Lo

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  • Rpayton
    Rpayton Member Posts: 235
    edited June 2015

    Addie: having those same symptoms too. Hate it and it has been a week. Also had horrible heartburn for 4 days. Prilosec finally working. Hang in there. Thinking of you and everyone here.

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  • Addie29
    Addie29 Member Posts: 307
    edited June 2015

    Glad to know I'm not alone. My stomach has been like this since Tuesday. I keep waiting for it to pass but nothing yet.

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

    hey addie, hope your tummy is feeling better...taxol is going to be so much better for you! I've been eating like a horse all day, actually over ate because food finally tasted good. But.....now my Stomache is totally bloated and sore. Oh wells. It's way better than AC! I got nulasta today and a few hrs later the bone and muscle pain and edema set in. Oddly enough it was mostly my nose that swelled up lol. I took two tylenol and a nap and have been good to go since then. Gonna take my b vitamins and prilosec and carafate and probiotics and see how the rest of the weekend goes!



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

    It's time to order the eyebrow pencil that's in my Amazon cart. It's the only cosmetic I've bought since middle school!

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  • AndreaC
    AndreaC Member Posts: 220
    edited June 2015

    ksusan: I am on TC as well but have not lost my eyebrows or eyelashes, but have lost hair everywhere else. When did you notice you were losing your eyebrows?

    Sorry to hear about all the rough SE's a lot of you are having. Addie: re watery eyes...my eyes have been watering like crazy since I was on chemo last year for colon cancer. The chemo was done in June but the watery eyes continued...my MO said that could go on for months. I never had a chance to let it stop before I was on chemo again. It's worse than ever now - it is so annoying! I am always having to tell people that I'm not crying!

    Aside from that, feeling great! The weather here on Vancouver Island is unbelievable - hot and sunny, feels like summer! Spent the day down by the river at the house of some friends of ours, DH went tubing on the river but I couldn't because I can't risk getting my PICC wet. Oh well, it was great sitting there chatting and snacking! Hope life is treating you all well.

    Andrea

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  • Addie29
    Addie29 Member Posts: 307
    edited June 2015

    my stomache does feel a little better BUT now I think I have thrush again. This will be #3. Seems to be a reoccurring thing with me. I have my nystatin mouth wash and have been trying to eat lot of Greek yogurt with live and active cultures. I can't taste anything. Oh well I guess.

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  • Alibeths
    Alibeths Member Posts: 656
    edited June 2015

    Have u tried any mouthwash???

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  • Addie29
    Addie29 Member Posts: 307
    edited June 2015

    I have. I have biotene, miracle mouth wash and nystatin mouth wash.

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  • gkodad
    gkodad Member Posts: 188
    edited June 2015

    Day 10 and finally feeling good after A/C 3.  Food tastes like food instead of garbage, water tastes like water, and my throat doesn't feel tight.  Bizarre how water becomes one the hardest things to get down!  I've taken a walk,  doing laundry, cleaning the house and can contemplate A/C 4 on Thursday without wanting to throw up.   Hopefully the psychological boost of A/C  being over will offset some of the SEs. 

    Last night, I had bizarre dreams, and then spent some time at 2:30a.m. rehashing why the Beatles broke up.  This stuff is doing a serious number on my brain  neurons!   Hope everyone has a good Sunday.

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  • Alibeths
    Alibeths Member Posts: 656
    edited June 2015

    try l- glutamine!!!!!!

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  • ThePrincess
    ThePrincess Member Posts: 424
    edited June 2015

    Glutamine? What is that for? Thanks!!

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

    AndreaC, I still have most of my eyebrows, but there's one area where the hair disappeared after #2. I assume it's a part of myself with worse circulation, perhaps part of my brow I banged or injured as a child. It's about a millimeter with no hair, so it looks weirder than just having a thinning area.

    My chin hairs have great staying power, however!

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  • Alibeths
    Alibeths Member Posts: 656
    edited June 2015

    it helps with mouth sores. It's a powder that you put in your drink three times a day ! Seems to help!

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

    You'll want L-Glutamine powder. At Amazon: http://www.amazon.com/Jarrow-Formulas-L-Glutamine-...

    As Alibeths says, put it in a drink (or just water) and swish in your mouth, then swallow, 3 x a day.


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

    imageNew wig! I always wanted curly hair but not sure about this one...

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  • Addie29
    Addie29 Member Posts: 307
    edited June 2015

    I like the wig

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  • Alibeths
    Alibeths Member Posts: 656
    edited June 2015

    wig looks

    Soooo real

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  • mammaof3
    mammaof3 Member Posts: 1
    edited June 2015

    Hi Ladies,

    I started Chemo in April (end of the month), everything happened so fast from the time I found the lump to now, my head is still spinning. I have a quick question for you. Last month after session #2 I had a period, was told by my chemo RN that I "should not expect one, but if I do it would be very light", well it was just like a normal cycle execpt shorter (4days instead of 7). I contacted my RN, she sent me to OBGYN and they wanted to take a biopsy, I declined. The thought of more needles and pain is very upsetting. I have been in and out of dr's since Feb, the thought of another visit gives me the shakes. I will be headed in for my third session this next Wednesday and like clock work I started again. Have you had any thing like this? When did your cycle stop because of chemo? I wonder because of my age .. 

    Thank you for taking the time to read my post. any support would be wonderful  

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