Starting Chemo January 2015

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  • Cherylfg
    Cherylfg Member Posts: 97
    edited February 2015

    I'm back at my clinic for another round of IV fluids. My nausea and fatigue have been a lot worse this round, round 3. I feel better than yesterday but still pretty bad. Hopefully, the IV fluids will help.

    Cheryl

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  • thecolorpurple
    thecolorpurple Member Posts: 126
    edited February 2015

    Cheryl,

    I am so sorry you are feeling so icky. Do the IV fluids make you feel a lot better? I hope so. Keep us posted. Thinking of you.

    Kristin

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  • thecolorpurple
    thecolorpurple Member Posts: 126
    edited February 2015

    hi beachbum! I just started using the flushable toddler wipes and I also purchased some witch hazel wipes that are flushable. I read that someone developed a permanent fissure from the big C and D. I had several days of bleeding when I wiped after my last bout of C so now using baby and tucks (witch hazel) wipes. Much better.

    Kristin

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  • thecolorpurple
    thecolorpurple Member Posts: 126
    edited February 2015

    hi Teri I drank I large can of coconut water every day for 3-4 days after my last infusion. Felt like getting a shot of electrolyte laden fluids-really made me feel good. Thankful for your recommendation on Apple cider vinegar. What should my proportions be? I tablespoon to one glass water? How often should it be taken? Empty stomach? I have some Braggs in the fridge.

    Kristin

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  • thecolorpurple
    thecolorpurple Member Posts: 126
    edited February 2015

    Marjo,

    How are you feeling this round? Hoping SE are minimal?

    Jenn

    How's your back holding up? Hope that is maybe muscle strain from dancing, soon to resolve?


    It's back to work again for me tonight. Really enjoyed being there last night. Two more twelve hour shifts at the hospital them round 2 AC Weds. Have been feeling really good since early last week and went a little crazy on eating I must confess. Just felt so good to have an appetite. I was being so "good" with my uber healthy eating prior and during last chemo round then fell off the wagon a bit. Trying to get it under control again so my system is nice and clean for chemo infusion #2. Anyone else have this problem? I almost feel PMSy but I was under the impression that AC would put me in a chemicalmenopause. I would lay money down that I am really close to having my period. Ugh. We shall see.

    Kristin


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  • TeriMP
    TeriMP Member Posts: 89
    edited February 2015

    Hi Kristin, I am glad to hear the coconut water worked good for you, I will ask my friend's mom who much apple cider vinger / mixture she took as I am unsure.

    I also believe I am in chemopause now, I had my last period early January (week before my first Tx); I have not had he since but did get slight spotting and PMS last week when I was suppose to get jt again. I have notice as well I have been getting hot flashes lately.

    For the most part round 2 has gone much better than round one, think I was better prepared and the drugs weren't such a shock to my system. I've started to get slight bone pain (day 4), but not to where I need to take anything for it. Keeping my fingers crossed!

    How are you ladies doing?

    Lots of love,

    Teri

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  • Tennisfan
    Tennisfan Member Posts: 114
    edited February 2015

    Kristin, thanks for asking! Most SEs under control - no heartburn (thank you Losac) and much better sleep without any help. Bic C also under control (tall glass of prune juice and one Senocot-S every night until at least day 6). So just battling with flu like symptoms - feeling yucky, hot, cold, hot cold, chills and not a lot of appetite BUT, given what I read here everyday far from me the thought to complain! Third day on the couch waiting for the yucky feeling to dissipate and my taste buds to come back. Was going to push myself and go grocery shopping but it's -30 today so I am staying right here under the blanket.

    Hoping to be ok to go back to wiork tomorrow if all goes well. Might skip Mindfullness as they are doing yoga - too much after a full day of work - better to pace myself!

    Wishing you a good night of restful sleep, all of you virtual BC sisters!

    Marjorie

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  • spookisgirl
    spookisgirl Member Posts: 96
    edited February 2015

    Hi all,

    The back seems to be slowly working itself out, I can bend again. It appears to be caused by a combination of too much time sitting on the couch, and menstrual cramps. I now am sitting on one pillow with another behind my back for support. Doing lots of back bends and gentle stretching. So far no need for muscle relaxants today. It's an old injury from training that has been irritated from the too much sitting.

    Energy levels really dropped this weekend for me (although part of that could be the muscle relaxants). My blood pressure seems to be remaining low as I have to be very careful getting up as I see spots if I do it too fast, and I am light-headed. The other thing that has arrived is severe dry mouth, sensitive mouth and teeth and metallic taste. My appetite has taken a huge dive because of it. Drinking lots of water and have some juice pops for the dry mouth. Just riding out the rest. Sense of smell is also driving me crazy. Hair falling out faster now too. I am surprised to have my energy drop so much going into my 3rd week. 2nd round of AC will be Friday and then port placement the following Monday. I hope my energy picks up some before then.

    Kristen--I have had heavy spotting for more than a week now, and then yesterday got a full-blown heavy period-the spotting started two weeks early, and now this period is a week early. I also had PMS symptoms before that started almost immediately after my treatment, as well as night sweats and hot flashes. I wasn't expecting any period at all once I started treatments, but it seems I have the opposite--one I can't seem to get rid of. It could also be affecting my energy levels.

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

    Oh goodness Spookisgirl, you are having a rough go of it. All things unnatural, and natural as well. That is a lot to handle all at once. I have had a rough go with Adriamycin. I have shortness of breath, and heart damage from it. My blood pressure has been very low as well. Make sure you tell your MO, the side effects can be permanent. Be careful, I sometimes walk like a drunken sailor when I lose my balance or get up too quick.

    Try plastic forks and spoons, and try to eat room temp. foods or cold. Drink a lot of water, eat Jell-o, and try frozen popsicles or juice bars. The dry mouth makes me crazy still. I carry Brach's Lemon Drops and suck on them frequently to stop it. Biotene mouthwash works well also. Tart and sour seems to help the dry mouth, some minty things burn. And roll on the lip gloss. My nails and skin are so dry, I feel like a lizard. And my toenails, they look like they belong on a scaly lizard. Geez, this is a full time job keeping after side effects and skin care. Get as much rest as you can, the fatigue like chemo is cumulative.

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  • thecolorpurple
    thecolorpurple Member Posts: 126
    edited February 2015

    hi jenn,

    I am sure you have all this, but the Biotene products are great. I have the toothpaste, rinse, gel for dry mouth and the spray- I use the rinse in lieu of the salt water rinses they recommended 4-6 times a day. I found the softest toothbrush avail on amazon.I have been using the spray ALOT at work. Tons of hydration. Some take lysine tAbs which can be purchased at health food stores. We need to get ahead of the mouth issues before sores develop. Then it is so hard to eat and so painful. Your doctor can prescribe a Rx mouthwash if you are headed in that direction. My sis just went through this journey in the last year, so I have lots of wonderful tips from her. Taking care of the mouth was one of her biggest recommendations.


    Ok the nurse in me is worried about your dizziness and what I know is low BP. You need tons of water WITH electrolytes. Pedialyte may be a good choice. The intra and extra cellular salts will draw water where it needs to be to stabilize your BP and keep your dizziness, seeing spots under control and ultimately prevent you from passing out and getting injured! Please be VERY slow going from lying to sitting to standing. If you stand and feel dizzy, sit back down immediately. If you are dancing, showering, walking, whatever and feel dizzy, take a seat right then and there and get a liter of fluid, ideally with electrolytes in you right away. Ok I am off the soap box. Worried about you, jenn! Keep us posted.


    Kristin

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  • thecolorpurple
    thecolorpurple Member Posts: 126
    edited February 2015

    marjo, Not being a creeper I promise, but did watch an Anthony bourdain special on Quebec what a gorgeous place. He talked about how tough people have to be just to live there! I am sorry you are so flu-ey feeling. Have you been taking your temp, you may be running fever? So good you are taking good care of yourself. I know you skipped shopping today and I hope you have some good go to foods you can tolerate in your home.let us know how the night goes. I am off to work!

    So good to get all of your updates. Care about you all! I suggest a girls meet up when this journey is complete! Where should we meet? Somewhere cheap to fly to. Ideas?


    Love

    Kristin

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  • thecolorpurple
    thecolorpurple Member Posts: 126
    edited February 2015

    Brandi,

    Tell us about oil pulling. Thanks. I will add to my regimen. Does it help with icky tastes and such?

    Kristin

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  • loriekg
    loriekg Member Posts: 263
    edited February 2015

    Oh shoot...I was going to look for some sunflower oil when I ran to Target today--but didn't write it down so I promptly forgot.

    I have a question for ya'll about the L-Glutamine. In my instructions it just says L-Glutamine 15 grams twice a day for 7 days starting the day of chemo. Doesn't specify which, powder or pill form. Does anyone know if it makes a difference? I'd been taking the powder and would MUCH prefer taking a pill!

    So sorry to hear about the rough time ya'll are having this go around! I'm praying for you all and hoping for good updates this week.

    --Lorie


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  • Cherylfg
    Cherylfg Member Posts: 97
    edited February 2015

    IV fluids worked well and I felt better after. Nausea came back in the evening along with joint pain from the neulasta shot. Round three for me has been the worst. It makes me nervous for round 4.

    Cheryl

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  • dstar
    dstar Member Posts: 72
    edited February 2015

    Yikes, Cheryl and Jenn! Sorry about the super tough rounds. Side effect from neulasta: nausea. I am doing better this round, lots of meds, staying ahead of the nausea, hydrated, able to work though I feel as thick as a brick. Not taking Bactrim seems to make everything better. Still have to finish my neupogen shots, ack! Not looking forward to tomorrow, crash hard day for me last time. Hoping for better this time. We all seem to be in the thick of it.

    I asked my onco doc (the head our onco dept) about withholding any medication to manage SEs through this round (per remarks read in this thread) and he made a wry face and said, "I can't even address that, that is so ridiculous, not our philosophy here, it's a period of 2 months, do you want more pain medication? you can have anything you want! We need you to get through this part of the treatment whole" He made me laugh and feel safe and appropriate, not like a drug addict for wanting to get through AC gently. I got an extra bag of IV fluids after my last treatment, it made me feel so much better, kept me ahead of the hydration curve. I feel that this is the time for the big drugs, if we don't use them now, then what are they for, who are they for?

    Plus, my onco nurse got me a vegie burger, (yum) talked to me about my hair, and everything else. She petted my shaved head lightly, so gentle like my mother when I was a girl. Made me want to cry. Amazing gentleness and compassion. I love my onco nurses. What to give them when this is all over?

    Stay strong ladies and sleep well. I am off to have my senna tea then walk my scrappy terrier. Thanks for the hydration/low BP advice, Kristin. I am going to pick up some pedialyte, just in case.

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  • PMR53
    PMR53 Member Posts: 452
    edited February 2015

    Cheryl glad you got fluids. Makes a huge difference. I had them first round. My BP was low and fluids helped here also. Would have liked a bag last week after #2 but got through it. The nausea and fatigue made eating impossible except for toast and mandarin oranges. Nausea at bay today. Got out and walked. Was 51 degrees I have the worst taste in my mouth ick. Doing Biotene and lemon drops. Any other ideas?

    Lorie. I do Glutamine powder. 1 scoop per 8 oz fluid. I can't taste it in Gatorade. My ND said 3x daily. Hope that helps.

    Kristin. Love your idea. You are 3 hours from me!!!! I am by Spokane. I would love to see and meet each and everyone of you. Although I am a big cry baby so I am sure it would be major waterworks.

    Beach bum. I have been feeling like a lizard too. Put oil or creme on 3 x a day.

    • Marjorie. I hope you feel better and get through this round fast!!!! The nausea and flu like is the worst SE. Oh beside the excruciating Nuenasty pain. The clinic didn't want to check my CBC between #2 and #3. Is that out of ordinary?

    Spookisgirl. Hang in there with energy. I get so frustrated. I am used to being the energizer bunny but of course BC changed everything. Please take it easy and get your BP checked if you are feeling lightheaded.

    Hugs to all!!

    Patty

    Watching Grammys. One of the presenters called Taylor Swift by her nick name T Swizzle. Lol. I thought that was funny.

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  • thecolorpurple
    thecolorpurple Member Posts: 126
    edited February 2015

    Cheryl I am so bummed you are suffering like you are. What nausea meds are they giving you? I got Emend and Zofran iv then did ok on every six hour compazine Not great, mind you, but ok. Can you take everything round the clock regardless of your symptoms? That's what I did per my sister's suggestion. Do you have Ativan ? That is a great anti nausea med and will help you rest. Can your husband wake you round the clock to take your meds on a schedule? I know it goes against what you want to do but you have to get tons of fluids some how. That will help the nausea, dehydration can cause nausea in and of itself. I wish I could come take care of you....

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  • SweetHope
    SweetHope Member Posts: 439
    edited February 2015

    Gentle hugs to you all. Especially those of you who got a visit from Aunt Flo. I haven't seen her in years and the thought of her visiting now just seems cruel...as if these SE's weren't enough.

    Today I visit my friendly vampire for blood work at the Infusion Center. So far I've taken them a basket of chocolate munchies and I've taken Mardi Gras stuffed animals for each chemo chair; but that just doesn't seem enough for all the misery they see and the loving care they give us. Who's got some good suggestions? If I win, excuse me, WHEN I win this $450 million lottery they all get to retire.

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  • JustKeepSwimming44
    JustKeepSwimming44 Member Posts: 44
    edited February 2015

    Cheryl, round 3 of AC was the worst for me too. I am going for last round on Wed. Onco nurse said many report a terrible round 3 but do better round 4. Hoping she's right.

    Hang in there ladies. A great thread for inspiration is in the stage 3 forum "what a difference a year makes". I'll bump it up.

    Sarah

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  • TeriMP
    TeriMP Member Posts: 89
    edited February 2015

    good morning ladies! I am so sorry to hear the side effects are still a problem for so many of us!! I wish you all speedy recoveries!! I am happy that you have helpful ONC and ONC nurses that are truly trying to get you to a comfortable place during these horrid treatments. I too asked my onc about reducing the dosage as the first round was extremely intense but she said she wanted to keep it the same to ensure we get "all those little buggers".

    I am still feeling ok, bone pain is now coming back from Taxotere, had to use the heating pad and Tylenol last night for it. Been holding off in the oxy as I already seem to have developed chemo brain (my husband and I were talking about my BMX surgery and I couldn't even remember which hospital it was done at; we only have 2!!!! ). I noticed the cuticles/skin around some of my fingers are now peeling off., nails haven't lifted but I am trying to keep them smothered with lotion.

    I am out if my "funk " the first round put me in, but I feel so guilty my husband is going through hell too. He always says we are a team and will do it together but the thought if him having to deal with this makes me cry. I know it's not something I caused I just hate too see it affect him (but I know I'd me more upset if he acted like it was nothing). He has taken a leave of absence from work to stay home with me during my remaining treatments which I am grateful for as the rest if my family works lots or is out if the country and his family has their own stuff going on. I have always had the mentality I can deal with whatever comes along but I don't want my lived ones dragged into it. I don't know if I'm being crazy, overly sensitive, too much time to think, etc?

    I'm thinking if you all!

    Lots of love.

    Teri

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

    Good morning ladies, I hope you are feeling OK. I had terrible bone pain while on Taxol and Neulasta the day after. On my last Taxol day, I told the MO that I did not want the Neulasta the day after. But we reduced the dosage of the Neulasta by 50%, and I had zero pain! Since I was done with chemo I had time to recover before surgery so it wasn't as critical. I just watched what I ate before surgery and it worked!! I had enough of that crazy bone pain. I also took Tylenol #3 with codeine.

    I hope you all have a decent week, just push through it, you will be on the other side of chemo soon.

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

    Hey I forgot - if you are having nail issues, use cuticle oil and buff them to a shine. I do not polish mine, I just trimmed them way down, and they are almost all grown out now. I did have toenails that are lifting, and the new nail is coming in under the old nail. My thumb nail did the same thing. But the discolored "chemo" finger nails are now super hard and a pretty pink finally! You will be there soon, and have nice pretty feet for Spring!

    Game on this week, almost there!

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  • TeriMP
    TeriMP Member Posts: 89
    edited February 2015

    Thanks Beachbum, I will have to pick some up as I don't want them falling off, I wouldn't care so much if it wasn't my dominant hand. Which is weird because the injection was in my other hand. The body is so weird.

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  • spookisgirl
    spookisgirl Member Posts: 96
    edited February 2015

    Good morning ladies!

    Kristin--thanks for the tips--I added a couple glasses of orange juice last night to the massive amounts of water I drink and I am feeling a little more energetic today. Back is still stiff, but getting to a manageable point. Hoping to keep feeling better as the week progresses before my treatment on Friday.

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  • Brandi999
    Brandi999 Member Posts: 143
    edited February 2015

    thecolorpurple, I'm oil pulling as I type this. When I read up about what kind, you can use any kind really, but I read that the original types were sunflower or sesame. I use sunflower oil and it tastes like nothing. I just take a small swig into my mouth and swish it around for 15-20 minutes. I don't really understand how but it pulls toxins from your body and also whitens teeth over time. Make sure you don't swallow any and if you use an oil that can get hard when cold, don't spit it in the sink but rather the toilet or outside as it can clog pipes. If the oil tastes or smells weird it's probably rancid so get as high of quality as you can. So far I'm a month in and no mouth sores at all, no problems with dryness and my taste buds have been mostly normal. I've had a few days where my taste buds were off. I don't know if that's from oil pulling or not but I can say that when I went about 5 days without doing it, my gums started feeling rough and sensitive. When I picked it back up, no more problems. Hope that helps!

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  • RV6gal
    RV6gal Member Posts: 331
    edited February 2015

    Good Evening January 2015 chemo ladies!

    I am gearing up for Chemo # 3 tomorrow.I went for my lab work today and the neutraphil count was even higher today than it was for my 2nd chemo. Yeah me! I get a little nervous about it because they have such a hard time getting blood from me that I dread having to go back again just to "qualify" for chemo.The other great thing is with chemo #3, I will be 50% through this although I am dreading the taxotere portion that I get for #4 through 6.I hear that it causes a great deal of muscle and joint pain.I guess planning for the possibility of pain is a good way to take some kind of control maybe??

    My chemo regimen is a bit different but I would definitely say the effects have been cumulative.I really struggled with fatigued this time around too but I hope it doesn't get much worse.

    Hope everyone is doing good and/or managing their SE's well!

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

    RV6gal, sounds like you are doing well. The fatigue is a bugger, but it is cumulative. Just be ready to nap. I had bone pain on Taxol with Neulasta. My MO said to take Claritin for 4 to 5 days. I took it 2 hours before the injection. Not sure if that helps, but ask the MO.

    Since we have all been down the chemo road, it's odd how many times we worry that we have to take chemo, then we worry that we won't be able to take it! Take care, game on!

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  • dimccleland
    dimccleland Member Posts: 59
    edited February 2015

    Oh my goodness ... before I started my chemo, my ONC told me that Taxol was one of the better drugs with much milder side-effects. I'm seriously starting to wonder as it has really beaten me up ... at it has thrown most of its side-effects at me ... tomorrow marks treatment number 4 so I will be a third of the way through. I'm going to chat to my ONC tomorrow to see whether we will go ahead with the AC chemo once the Taxol has finished. Feel like I need to start preparing myself for that already.

    I know that I'm not around very much but I read all the posts and am amazed at how you ladies are coping with the journey we are one you are all an inspiration.

    Beachbum, thanks for nail tips, I'm not a huge fan of polish so am pleased to know that I can probably make it through without polish ... my toe nails are not looking great but I am using tea tree oil (rather than cuticle oil) which I believe is also supposed to work a treat and I will start buffing them. I've also developed severe Rosacea ... my face is a true delight ... neither the ONC or the dermatologist can say whether its connect to the chemo or whether it has just come about as a result of my body being so stressed out ... I do have quite sensitive skin ... I really do look a site at the moment ... blotchy face ... hardly any hair ... a true delight :-)

    Brandi, my son's girlfriend is a huge believer in oil pulling and she tried to get me to do it ... unfortunately, the only thing I succeeded in doing was spraying the oil everywhere, I really struggled with it ... she recommends coconut oil, apparently its very good for removing the toxins. Luckily, I haven't had any mouth sores yet either ... my taste buds are gone and I have a dry mouth but no sore ... I've been using the Magic Mouthwash my ONC prescribed three times a day and it seems to be working ... fingers crossed that it stays that way.

    Well, I better be off to try and get some dinner on the go for the family ... hope you all have a fabulous day and for those having treatment today, I hope it goes well.

    Thinking of you all xx

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  • Cherylfg
    Cherylfg Member Posts: 97
    edited February 2015

    Thanks for all of the support, everybody. It helps to read all of your kind words. I feel better chemo-wise but I picked up my 3-year-old's cold. A cold in general is pretty crappy but a cold plus chemo is terrible. I'm on day 2 and he was better after a few days, so I'm hoping I'm at the end of it.

    thecolorpurple- I'm on Emend, Zofran, Compazine, and Ativan for nausea already. I talked to my nurse again and they are going to add another for my next infusion.

    Cheryl

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  • kbram
    kbram Member Posts: 185
    edited February 2015

    Good morning everyone!  I am sorry I have not been around for a couple of weeks.  The first round of chemo threw me for a loop!  I am in constant awe of you all and the way you encourage each other.  What started out as me trying to help many of you with your chemo journey (since this is the second time with chemo for me)  ended with me gaining strength and encouragement from you all!

    Two weeks ago I had my first treatment.  That went fine and I had the neulasta shot the next day.  Because of me having prior chemo treatments, the dr wanted me to take the nausea drugs around the clock for three days after.  That pretty much made me sleep those days!  I lived off yogurt and water.  Made it thru without too much distress.

    Went last week for a mid-treatment blood test that showed I was neutropenic.  My WBC was at 1.1!  My daughter that is a nurse practitioner was panicked!  My MO nurse basically quarantined me and quarantined me from my 1 year old granddaughter!  This has been the worse for me.  BRANDI, I feel your pain on this issue.  I guess this is a little depressing for me.  I am not opposed to staying home and out of crowds but just knowing that I can't go is the problem.  Voluntarily staying home is one thing but mandatory is something else.  It does make a difference.

    Cheryl, one of my biggest fears is getting a cold while WBC is low!  My son came home from work yesterday with cold symptoms and is squirreled away in his room.  My daughter brought me some face masks from her work and I will use one tomorrow when I go for treatment.  My MO told me to call at the first sign of anything so that I can get on antibiotics.

    Even though I have not posted much, I read you all every day.  I must say this is the most loving group of women!  Thank you all for that.  Hang in and we will get thru this.

    Kathy

     


     

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