Starting Chemo January 6, 2014

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  • Asb
    Asb Member Posts: 99
    edited February 2014

    I made it through a day of work. That us enough for today. Nap time.

  • birdlover23
    birdlover23 Member Posts: 54
    edited February 2014

    Hi everyone,

    I came across a crazy idea today - I was speaking to a very earthy breast cancer survivor that my sister knows.  She used emu oil on her head to help her hair grow back in faster and thicker.  She bought it from here http://www.emuoildepot.com/ and said you have to watch where you buy it.  She said her ONC from University of Penn now recommends using it.  It seems expensive, but if you want your hair back faster and someone wants to treat you to something, ask for this!  I looked at the website a bit, but that is all.  I am not sure about any specifics, including when to start applying it, although I think it is once you are finished treatment.  She said this place is associated with Baylor University in Texas.  She has a very nice head of hair.

    I thought I would pass this info on to all of you :)

  • Pnak
    Pnak Member Posts: 21
    edited February 2014

    I found this wonderful place called The Healing Garden.  They provide free/low cost therapies to women with breast cancer.  So far, I've had massage and energy work (amazing!).  Tomorrow, I have yoga, support group, and acupuncture.  I feel this place is such a blessing...and it reminds me of one of my favorite quotes:

    "When it's dark enough, you can see the stars."  -Ralph Waldo Emerson

    and otceb, Thank you!

  • Marren
    Marren Member Posts: 59
    edited February 2014

    Hello Everyone, I new here. I'm 38 and live with me husband and 2 little kids. I started chemo 1/27/14, dx 1/7/2014

    I'm her2+ so we are doing chemo before surgery. 

    It's TCH+P

    I've been feeling pretty terrible the whole time. I'm 8 days out and still  dizzy and nauseous, fatigue. They gave me reglan and zofran and ativan. They don't seem to be doing to much to help. I try not to take them more than once a day. I feel so spacey and out of it. 

    I went in after a week from chemo and they said I needed the nuelasta shot. I did the claritan trick and I've been ok in that respect. The first dr I saw wanted to do fluids and zofran and neulasta the next day after chemo. But my current dr didn't think it necessary, but maybe they had the right idea. I tend to get dehydrated easy, so I try to drink as much as a can. Does anybody have any tips for nausea? Did you guys get fluids and anti nauseas day after chemo?

    I've tried ginger tea too. 

    Thanks I'm glad to have found you guys. I hope your all having one of those  good days.

  • Carol99
    Carol99 Member Posts: 116
    edited February 2014

    hi all, I'm new, I had my first of 4 AC on 12/27 but had some complications so my last one is 2/10.  I'm on the Dec. board also.  I see some of my Dec.. Sisters here:)

    I hate water too lately, it's making me gag.  Soda water is o.k. And Fresca.

    I have terrible chemo brain, my week of chemo I'm totally foggy.  No brain power for anything except Pinterest & TV.  I had a feeling of relief when I shaved my hair, I hated it falling out.  I hate my wig, I wear scarves & cute hats - I'm working & I get compliments on my hats:)

    I'm seeing a lot of young ladies here, I'm 45, I am BRAC 1+.  I have been in a genetic program at Dana Farber for a few years before my DX, thankfully, it was caught on MRI.

    I love all your posts but I just hate this, there is a you tube movie called Pink Ribbons, Inc. and a quote from it is "the biggest risk factor for Breast Cancer is being a woman".  It's seems so true with our span of ages & dx's.

    Good luck & wishing you all comfort!

    Carol

  • RHGSR
    RHGSR Member Posts: 774
    edited February 2014

    hey Carol!  I'm a December sister with ya!!  I float between Dec and January since I started 12/30. I get AC #3 tomorrow. My last one in the 20th.  Then I start either Taxol or Taxotere. My MO said we would discuss which one at my next follow up. I started on 12/30 but was on a 3 week schedule between #1 and #2. When I went in for #2 I asked about Dose Dense and he said we could do that if I wanted. So that's what we are doing for 3 and 4. 

  • tekwriter
    tekwriter Member Posts: 216
    edited February 2014

    Marren I don't know if it will help but I carry a bottle of club soda with me from the time I get home from chemo till bed time and make sure it is gone before bed.  2 liters is what my nurse told me.  I normally drink that much every day if I can.  I do think it has helped.  I hope this helps you too.

  • Asb
    Asb Member Posts: 99
    edited February 2014

    marren, welcome. I am on the same chemo as you. My MO told me to take Prilosec OTC-everyday to prevent nausea. He said the chemo would target the lining of your stomach and the acid would cause nausea. I have only had one day of nausea and that was the day I didn't take the Prilosec. I am not sure if that is what is working but I am not going without it. I get fluids, and emend with the chemo and the nuelasta the following day but nothing with it.  I was fuzzy headed and very fatigued until Monday after 2nd treatment Thursday, but have quickly been feeling better and getting my energy back since then. I do drink a crazy amount of water as well.

  • rabbitvelvet
    rabbitvelvet Member Posts: 88
    edited February 2014

    Hi   just getting back to this thread... I had my 2nd chemo today, the 5th and fervently hope I stay out of neutropenia hospital-land this time around.

    Thanks otceb and Tekwriter for your good suggestions and support

    Mor  I still have 'taste bud trauma' and expect it'll last as long as chemo does and then some.  However nothing was as bad as the burned mouth and inability to swallow that the screwed up immunity caused.  One thing that has helped me is room temp fluids and plain food.  Once I could swallow again, Jello tasted fantastic and canned peaches with cottage cheese was sublime.  I got so hungry that I said to h*** with my lactose intolerance and indulged (gently) and so far so good.

    Asb   I have been bald about a week and I also like how easy it is to get ready.  I had a halo wig made but so far I'm only interested in wearing turbans and scarves.  When I was really weak I wore my turban and mask to the grocery store and could've have cared less what any one thought....That's a liberating feeling.

    RHGSR   It's funny - every time I see my bald head in a mirror, I see my Dad's forehead and after I got over the weirdness of that, I think it's both sweet....and bittersweet.. I still miss him.

    Desimone  My Doc said that I would not necessarily get a repeat of my neutropenia ....he said the Neulasta shot should get my immunity to stop it's downward slide this time.

    belleB   In the hospital they gave me liquid lidocaine so that I could at least swallow water and broth.  I suppose spraying Chloroseptic in your throat would have a similar effect.

    Lastly I was given a get out of jail card.  I have been carrying a load of guilt for 'causing' my Neutropenia. because I didn't drink enough water.  I was not at fault according to my mo - my immunity went down the drain or off the cliff. 


      

  • tekwriter
    tekwriter Member Posts: 216
    edited February 2014

    I have noticed I am becoming accustomed to my face finally and beginning to like it for the first time since I shaved my hair.  When I looked into the mirror yesterday to start putting on makeup to go to the Dr. it was different. I began to notice some softness instead of just my hair loss.  Anyone else?

  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited February 2014

    tekwriter.- rabbitvelvet. - I look in the mirror and see my father also.  He was mostly bald as long as I could remember.   He has been gone for 8 years now. My face is starting to look different but that is from the 25+ pounds I have lost over the past 3 months. Combination stress and no appetite from the chemo and horribly dry mouth.  Face is also very dry and I am having to use more moisturizer.  Dry winter weather does not help that. 

    Ran a cool mist vaporizer the past few nights and that has really helped with the dry nose ,although I still had a small nose bleed this AM., overall my nose was not as stuffy in the AM. 

    Off to hospital for CBC, ( after digging out the bottom of the driveway where the plow pushed all the street snow back in) will see how low the WBC went this last AC cycle.  Day 8 after it and finally starting to feel less crapy.  Hoping the taxol is better. Just scared if the first infusion and allergic reactions. 

    Barbara 

  • RHGSR
    RHGSR Member Posts: 774
    edited February 2014

    rabbit velvet and crazy rabbit - wow... That brought tears to my eyes. those are sweet/bittersweet memories. 

    Crazywabbit  - have you tried coconut oil for your face? It comes solid but melts very quickly in your hands. I've been using it on my face and scalp and love it. Really moisturizing and has a nice light very mild  coconut smell. 

  • Sam2U
    Sam2U Member Posts: 233
    edited February 2014

    Quick question--I had my second AC treatment a week ago, and I am feeling extremely tired-even more so than the first treatment, I have a history of anemia and it feels like what is happening.  The mo didn't check my counts except for the day of the infusion, when do I worry about the red counts?  I don't feel like it is extremely low, but normally I would just start with iron twice a day, is iron ok or should I check first?

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited February 2014

    Sam2U - When in doubt always check.  I am taking iron and I know others who are too.  My MO approved it.  However, we're each different and it would be good to talk directly with your MO.  I had a problem with my white blood cell count the first go around and I went to get the levels checked every few days until I was out of the danger zone.  It's scary stuff and I prefer they keep a close eye on me.  

  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited February 2014

    RHGSR - I use Estée Lauder Daywear moisturizer on my face and really use double my regular amount and it helps,  I often alternate with oil of Olay. my son's GF gave me really nice French Shea butter which I use on my scalp.  If I use coconut oil I am afraid my dog will be licking me. She loves it and I often give her a small amt in her food as a supplement for her hair. 

    Barbara

  • Marren
    Marren Member Posts: 59
    edited February 2014

    Asb- Thank for the tips I'll  def look into the prilosec. And maybe the emend will work better than the Zofran. Did they give you nausea meds for home?

    And your treatments are once a week? How long are they? Did you get a port? I'm getting mine Monday which freaks me out. But the first infusion did really make my arm sore for days after.

    Mine are every 3 weeks for 6 hrs 6 times. Then whatever surgery and herceptin every 3 wks for 8mo.

    So you must be getting your treatment today. Good Luck I hope you glide right through it and relax.

    And symtom free. 

    Tekwriter-Thanks, I should try some mineral water, the bubbles might help.

  • Asb
    Asb Member Posts: 99
    edited February 2014

    Marren, 

    I get the THC/perjeta every three weeks for 6 cycles. But I am also getting herceptin weekly. After my 6 cycles I will switch to getting herceptin every 3 weeks. Last Thursday was my long day. They did give me nausea meds for home, but so far I have not needed them. I did get a port and it is wonderful. It looks a little weird but nobody else can see it and they can draw blood, give me my infusions, if I need an MRI with contrast they can use it as well. I had to have a blood transfusion after my first round bc my hemoglobin was low and they used the port for it as well. My arms would be black and blue as much as often as I go. I am very thankful I have it.  I don't seem to have many side effects from my just herceptin days. 

    My white counts were good today, but my RBC and platelets and hemoglobin were low. No transfusion this time though. 

  • Marren
    Marren Member Posts: 59
    edited February 2014

    Asb

    Herceptin weekly, hmm I hadn't heard of that. Are you tch+p days 6hrs? I just took a prilosec hopefully that helps with my nausea. 

    Do you guys have the numb/metal tongue? Everything tastes so weird. I really will appreciate my taste buds more when they come back. My fingers and toes are tingly too, which really bugs me when I'm going to bed. I had to take an ativan yesterday to sleep.

    I've been getting acupuncture so far I can't tell if it's helped anything. I'd also like to get out and go for a walk without feeling so loopy. 

    Does anyone else do acupuncture or massage? I wonder if massage would help or hurt with the aches and pains that the nuelasta causes. Although with the claritin it really isn't that bad. 

  • Asb
    Asb Member Posts: 99
    edited February 2014

    Marren,

    Yes, my long days are 6-7 hours. The other days are about 2 depending on the results from the CBC. 

    I have the numb/ metal tongue too. Food either tastes funny or I can't taste it. 

    I had a massage a couple of weeks ago and it was wonderful, very relaxing. I was worried the port would hurt, but it was fine.

    I haven't tried coconut oil for my face but I love it for my scalp. I will have to try it on the face. I worry about what the chemo is going to do to my  skin/face. Up until now I have always had good skin and look younger than I am. I am already giving cancer my hair and boobs, I hate the thought of it taking my skin too. 

  • Marren
    Marren Member Posts: 59
    edited February 2014

    Emu oil is also good. I've always had nice skin to, I hope that doesn't go too, I feel you. 

    asb-You didn't have mastectomy right? You just know you will. My drs just said I could see how much it shrunk and go from there.

    I just don't want to worry about it coming back. 

    So I just got a tip from a friend who just went through all this. 

    Glutamine powder -it helps with the numbness in the fingers and toes and tongue! I will be so excited if this works! Has anybody tried it?

    Does anybody get fluids the day after infusion? I might demand it next time, I feel so crappy and I know it's partially from being dehydrated. It happens easily to me. And I love drinking water.

  • belleb
    belleb Member Posts: 170
    edited February 2014

    My tongue feels raw, and a little sore. My throat was feeling yucky a few days ago but that seems to have passed. Now I have a nice little acne flare on my chin...where's this nice smooth skin I was promised?! ;) I've been feeling so good the last couple of days that I am starting to get really sad that Monday is coming so fast.

  • Asb
    Asb Member Posts: 99
    edited February 2014

    Marren, 

    I haven't had surgery yet. They wanted to do chemo first because the tumor is close to the chest wall. I will have a BMX sometime after chemo.

  • Curlyq1974
    Curlyq1974 Member Posts: 144
    edited February 2014

    Hi everyone!  This post is the best!  You are all so strong and motivating to me!!  I couldn't take my hair falling out anymore and the pain so my husband shaved my head for me.  Clearly, I need a new hairstyle when it grows back because EVERYONE has told me how young and vibrant I look and that I rock a bald head.  How funny is that!!!  All the anxiety, tears, anguish and I have had nothing but compliments!  And I'm not botherring with hats, scarfs or turbans.  Just plain ole bald.  And it is so easy to get ready in the morning!  I did buy some new make up.  Someone recommended a bronzer, so I bought one at the Bare Minerals store.  It is amazing.  My skin is so soft!  Not sure if it is the bronzer or chemo but I'll take it!

    Day 7 post Neulaste is complete and total hell!  Learning the hard way as always!!  OMG, tears were streaming out of my eyes uncontrollably.  The pain was unreal, worse than child birth.  An oxycodone and two hours later things settled down, but ouchy-wow!  I have read the Claritin tid-bit in this post and I'm willing to try anything to keep that pain at bay.  Living and learning... lol!

    On the worrisome front, I woke up this morning with a cold and it is quickly moving into my chest.  I spent the first couple minutes after waking up coughing up phlegm.  Normally, I would just take over the counter stuff and carry on with life, but as we all know, nothing is normal now.  I'll be calling my MO in a little bit.  I really hope it isn't going to delay treatment on Tuesday and I really hope it doesn't end up with a visit to the hospital... blah! 

  • Diamond_lil
    Diamond_lil Member Posts: 76
    edited February 2014

    hey curly, hope you feel better soon. I had a fair bit if bone pain 7 days post neulasta, but it was only for 1 day and 1 dose of ibuprofen did the trick. Oxycodone is only available by prescription in Australia and it is pretty heavily regulated. Is that the case in the US?

    I am not having a problem with my bald head..... But it's summer here so it's cooler with my head uncovered. I am working so I either wear a wig or scarf to work.

    Looking forward to a warm weekend with a party and a good long walk on the beach!

    I hope every one stays well

    LIL

  • Curlyq1974
    Curlyq1974 Member Posts: 144
    edited February 2014

    Hi Diamond!  Oycodone is prescribed, and I was shocked when they gave me the prescription.  I thought it was kind of a high powered medicine rarely prescribed, but I guess I was wrong.  I'm jealous of your warm weekend and walk on the beach!  We are expecting 2-4 inches of snow and wind chills below zero!  Enjoy your toes in the sand!  When I get thru treatment, that will be my gift to myself - a vacation to a beach where I can drink those tastey drinks with the umbrella in them :)

  • birdlover23
    birdlover23 Member Posts: 54
    edited February 2014

    Is anyone on Abraxane?  I was scheduled to get Taxol once I am finished with 4 cycles of A/C, but Taxol will give me a worse allergic reaction than I had to Emend.  That reaction was very bad.  So my MO says I will most likely get Abraxane after the A/C.  Wondering what it is like...

    Hope everyone is having a good day.  We had a bad ice storm this week and were without power for almost 2 days, so I am enjoying the heat (and computer) again.

  • Marren
    Marren Member Posts: 59
    edited February 2014

    Hi Everyone, 

    Curly you must get claritin. I had two different dr tell me about it. And I have friends who have used it and so did I. It works, I took it an hour before my shot and then one every morning for the past 5 days. Of course ask your dr. But I've had only mild aches and pains, but I had those before they gave me the shot, from the chemo. Good for you for rocking the bald head. I cut my hair pixie style and I'm trying to get use to that. But they say it should be gone in about a week or two. Not easy for me I'm a hair and make up girl never left home w/o. 

    Birdlover- I haven't taken any of those. But Emend is anti-nausea right? Did they give you zofran instead? Why do think taxol will give you a reaction? I'm so sorry you had a reaction on top of everything else. 

    My dr mentioned trying emend on me instead of zofran because I've been feeling so bad. 

    But I really just think I'm dehydrated. 

    And so to repeat but has anyone tried the glutamine, I'm going today. Thats suppose to help with numbness in fingers and toes, and the tongue. I hate that I can't taste anything.

    Anyhow I hope everyone has a great day!

  • Diamond_lil
    Diamond_lil Member Posts: 76
    edited February 2014

    Hi Marren, everyone says it must be quicker to get out of the house without hair, but unlike you I've never been a hair girl.... I think I've straightened my hair twice in my life! I find I take longer because I am a novice with make up too!

    Beautiful weather here, I'm getting out in it

    LIL

  • Sunshower
    Sunshower Member Posts: 43
    edited February 2014

    curlyq- Hope you are feeling better and you don't need to go to the hospital. I tried the Claritin with my Neupagen shot and I still got pretty bad back pain for about 3 days. My doctor gave me a prescription for Celebrex for the pain. Oxycodone should be just as good. I wonder why they choose one or the other...

    Marren- I've heard good things about the glutamine. I haven't had any peripheral neuropathy so far so I haven't used it.

    Diamond lil- hope you have a great weekend and enjoy that walk on the beach! It's winter in Florida, but we get some good beach weather too. Hopefully it will warm up this weekend.

    So...I am 10 days post my first chemo and just got my period. I was expecting chemopause, so I'm a little surprised. Otherwise, I feel pretty good. I'm glad we get a little recoup time before getting knocked on out butts again. I just have some minimal hair shedding but am gonna shave it once it starts coming out in clumps. I'm enjoying my pixie cut in the meantime. 

  • Diamond_lil
    Diamond_lil Member Posts: 76
    edited February 2014

    sunshower, I got my period about then too, Just another little surprise! 

    I am investigating taking glutamine during 12 week taxol, but I will check with my onc first.

    As for the Celebrex v oxycodone they work on different pain pathways. Celebrex is essentially a non steroidal anti inflammatory... The same family as the ibuprofen I take, while oxycodone is an opioid type drug.... It is certainly the flavour of the month for very strong pain, although it has all the problems associated with narcotics. With the Celebrex, just make sure you take it with food as it can be a bit harsh on the gut.

    I'm back from the beach and it was just beautiful, my doggie loved it too.

    LIL

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