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Starting Chemo May 2019

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  • santabarbarian
    santabarbarian Member Posts: 2,310
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    Is anyone in this group doing brief fasts or semi-fasts prior to chemo?

    For me, those helped a lot with the SEs. If you have lousy SEs and want to try it, the protocol is either a 3 day water only fast, with chemo day on day 2, or a 5 day ultra low cal "fasting mimicking" diet with chemo day on day 3. You can google "Dr Valter Longo USC" to read about it. I have posted about it on this site many times. In a fasting state your body goes into a "self-protect" mode which makes healthy cells a little more quiescent so they do not take up the chemo as much. Cancer cells do not go quiet ... so this boosts the response to chemo while reducing SEs. In mice, the response to chemo was better in the fasting mice and this is being tested now in people. I went for it based on the mice, and feel it was one of the things that really helped. Just letting this chemo group know!

  • Alicesneed
    Alicesneed Member Posts: 78
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    MountainMia - you can let your hair down in here - no worries. We knew you weren't talking about us! Winking

    People do say dumb things! But I am guessing I was one of those 'before' as well - or at least not as well educated as to the best things to say. I can tell you the best things I have heard from people were:

    "You will be loved through this" - by someone I don't even know that well but her words touched me beyond belief and she is right - I have been loved through this process by many - including many here.

    "I'm sorry you are going through this" is the other simple one that feels best on the shoulders. The ones that aren't helpful IMO are those who want to share stories of their friends/family that they think have taken the same path that I have. That is another BIG one I have learned - each and every one of us is on our own physical and emotional journey here - no two are exactly alike. Don't get me wrong - the support we can provide each other in this forum as we journey together is so incredibly helpful. (Jumping off the soapbox now!)

    Hope everyone is doing well today. I'm dragging a bit and struggling with appetite after my big steroid crash (I'm day 3). But hanging in there! Time for a walk!

  • HappyAnyway
    HappyAnyway Member Posts: 380
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    Kerrybelle, sorry that you're here, but I am glad that you found this site. The people here wonderful.

    VeeBee, one down! I hope that you have minimal Se.

    Love to all.

  • mountainmia
    mountainmia Member Posts: 857
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    Thanks, Alicesneed. You got it completely. NO ONE has said anything really offensive to me, but a lot of people have said things that made me blink a couple of times! :)

  • VeeBee
    VeeBee Member Posts: 30
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    Ok Treatment #1 Done!!

    The day started at 830am and sitting in the famous chair surrounded by other great patients about 10 chairs in total formed in an oval shape, a simple IV is inserted into my wrist. I do not have my port yet(MAY 15th) so IV they inserted. My veins are small but she found the good one in my wrist. Sugar Fluid is now flowing. At this same time I take my 3 Steroids and 1 Nausea capsule. The waiting game begins as they ordered my Mixture from the pharmacy. Everyone in this unit is AMAZING and filled with Knowledge if you have any questions by all means ask them, they have tons of resources and don't be shy, speak up!! They have heard it all. The Head Doctor comes to talk for a little bit and lets me know all side Effects, out of all the Doctors and Surgeons I have seen, he scared me the most! Vitals are taken.

    11:15am My meds are delivered to us in a black locked down box! Heavy duty stuff in there lol The nurse uniforms up, heavy gown, gloves, mask and goggles. The red Devil is first. She gets herself comfortable and places my arm where she needs it. She removes the HUGE needle filled with Red Toxin and I break down and start crying!! She carry's on trying to make me comfortable with kind words, she starts to insert the toxin...its so cold in the arm. I start to itch in that area...and itch and itch....holy hell someone take my arm off lol I got really Dizzy. She stopped injecting it for a minute or two until i felt better. Still mildly itchy she begins again. Itch goes away not so dizzy anymore. One vial down, on to the next. These two vials took about half hour to insert. While she is doing this she is explaining all side effects, what will happen, how it will happen, what to do at home and how to take meds. GREAT DISTRACTION!!! High Five and done the Adriamycin(Doxorubicin) on to Cyclophosphamide.

    This injection was done by a bag of toxin lol dropped through IV No Problems with this one until around the end when the from of my head hurt a slight bit and sinuses ached, nothing I couldn't handle by myself. This Drip lasted about 30 minutes as well, she then flushed the Meds through my system and ALL DONE! YAY

    Inbetween all this was me getting up 4 times to pee!! HAHAHAHA oops so much water and IV Drip.

    Got out of there around 1pm

    I'm feeling ok, I feel a little high and tired, differently not my best !! Stress overload today. hoping this evening I feel a little better. Will update if any changes

    WE GOT THIS!!!!Heart

  • Alicesneed
    Alicesneed Member Posts: 78
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    VeeBee - congrats on one down! Hope the SE are minimal. Hang in there!


  • annie60
    annie60 Member Posts: 295
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    Thinking of you today VeeBee.

    Annie

  • VeeBee
    VeeBee Member Posts: 30
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    Thank you ladies for the well wishes. Just a little update, been up since 130am. I’m so tired yet can’t sleep. Yesterday’s nausea was crazy. Anytime I moved my head I felt like I needed to throw up, but it wouldn’t come out!! It’s has calmed down a little this morning. Just peeing red like crazy. S/E of red devil. The skin on my chest seems to be very sensitive and leaving red marks/line type weirdness lol if I lay on my side it marks up easy. Not bothersome or itchy so that’s good.

    Today I get the Neulasta Shot! 😑 cross ur fingers for me lol


  • April0315
    April0315 Member Posts: 167
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    VeeBee... thank you so much for the play by play. I am very nervous about that first visit and your post eased my mind. We can all get thru this together.

    Hope you feel better today and are able to take a nice nap.

  • HappyAnyway
    HappyAnyway Member Posts: 380
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    VeeBee, if you don't have an anti nausea med, please ask for one when you get your Neulasta injection today. You're in my thoughts!

  • lacombattante
    lacombattante Member Posts: 151
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    VeeBee,

    I echo HappyAnyway advice: please do get anti nausea meds or - if you have them already - ask for a dose adjustment. I find that taking the pill first thing in the morning works best for me.

    And... hydrate hydrate hydrate. I rediscovered ginger tea, which helps me meeting my 1.5 - 2 liters a day

  • VeeBee
    VeeBee Member Posts: 30
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    Yes I have Prochlorperazine 10mg and Haloperidol 5mg shots if I still can't keep anything down with the first one. They got my back apparently lol We have a Nurse Mother in law in the family so she will be doing my Neulasta shot. YAY

  • VeeBee
    VeeBee Member Posts: 30
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    April0315, I'm so glad that I can help in any little way possible being through the computer at a distance. And when it's your turn to talk about your experience it will feel so good to help the next beauty going through it.

  • VeeBee
    VeeBee Member Posts: 30
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    Excellent idea on the ginger tea , LaCombattante !!! Will pick some up!

  • HappyAnyway
    HappyAnyway Member Posts: 380
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    Ugh. Spent 3 hours at the office. Didn't even see doc. Nurse practitioner came in after I had been there an hour. Blood work looks good except wbc is super low. 1.3. Waited another couple of hours for insurance to approve neupogen injection. Got it. Supposed to get a prescription for an antiviral and an antibiotic. I go back on Monday for more lab work and likely another neupogen shot. I feel fine, just frustrated.

    Please be well everyone.

  • mountainmia
    mountainmia Member Posts: 857
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    Happy, I'm glad you're feeling well, but yes, you need to protect yourself from other people's ick right now.

    Now that I have a chemo plan (starting next Friday,) I have that same LET'S GET THIS SHOW ON THE ROAD!! feeling. Sooner we start, sooner we're done.

    In the meantime, husband and I are having closest neighbors over tomorrow evening for a snack, dessert, and a drink. We've told neighbors to one side of us about my health situation but haven't had a conversation yet with the others. Here's a good thing about these neighbors: they'll go home early. :) Which is good because even though I feel very good, my stamina is crap.

    Wishing everyone a peaceful, comfortable weekend.

  • MarthaMW
    MarthaMW Member Posts: 10
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    This is all still very unreal. I've cut my hair off and I feel bad from the chemo, but for some reason I feel like I am a poser. How can I be in denial.

    VeeBee - To be honest, I don't like my hair. I'm trying to, but I don't. My hairdresser and I joked about kids today will have a worse time if they have to go through what we are, since they all slept on their backs and have flat heads (my youngest son does :) ).

    I am very anxious about going back to work tomorrow. I am going to get a lot of questions because of my hair, and I am not ready for that.

    I watched a recording of a show called New Amsterdam. The main character has cancer and is going through chemo. This week he started losing his hair, and that scene scared the shit out of me. I don't want that to happen. Maybe I should shave it off. Will it really fall out in clumps like that?

    I hope all of you are well and your symptoms are not bad. I hope you enjoy a beautiful day with people who lift you up.

    I am thankful that I found this group.

  • mountainmia
    mountainmia Member Posts: 857
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    Oh, Martha, I feel for you. I understand how anxious you are about going to work with the short hair, which you don't really like. I also get what you mean about feeling like a poser. I haven't had my 1st chemo yet (Friday) so I don't have that experience, but everytime I tell someone that I'm being treated for cancer, it almost feels like a lie. I sure wish it were, for both you and me.

    Prior to this week, my husband and I had told few people. Family, pretty close friends, and a few others. But this week, with my chemo coming up and know the hair will be gone by the end of May, I've told LOTS Of people. In a really weird, unemotional, matter-of-fact way. Told our neighbors last night and the woman started crying. She said "you're SO matter-of-fact about it!" and I said, "well, I've had longer to think about it than you have." It's weird, isn't it? Like we're talking about someone else we don't know very well. :(

  • MarthaMW
    MarthaMW Member Posts: 10
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    Mountainmia - It is exactly like talking about someone else! Make sure to hydrate before your chemo Friday. They told me to do that and I did. My symptoms have been very manageable. I hope it's the same for you.

  • Buttercup2101
    Buttercup2101 Member Posts: 3
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    Hi,

    Im starting AC , followed by 12 weeks of T tomorrow. Im so anxious, how did your first treatment go? Hope you are doing well.

  • MarthaMW
    MarthaMW Member Posts: 10
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    Buttercup2101 - I've just been through 1 round. I was told to hydrate the day prior, so do that. The steroids you take today and the day after (and they give you in IV the day of) help alleviate your symptoms, so you likely won't feel "bad" until day 3 (Wed). I took the anti-nausea meds just in case because I was petrified of getting sick like I see in movies. I didn't. My symptoms were just achy legs and bones, dizziness, and tired.

    We are all here for you!

  • lacombattante
    lacombattante Member Posts: 151
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    Buttercup2101,

    My 1st round was on Tuesday and it was doable. I felt spaced out afterwards but it was also influenced by stress, being very uncomfortable after port placement just day before and from not sleeping during the night.

    I was drinking water like there was no tomorrow before, during and after, which was strongly recommended by my MO and nurses.

    They medicate you enough to control the side effects, for me the day four was the most difficult: my energy tanked but after sleeping for 10+ hours I woke up to feeling almost like my old self. Today, day six, I am feeling good, just a touch of headache this morning, but it was quickly gone.

    Fatigue was there, of course, but I made a point of pushing through it with daily walks increasing the time / distance with every day. I find that it helps. My rule is to try to move for five to ten min. If it feels like too much - stop and rest. If it feels Ok, keep on going:)

    Good luck tomorrow and I will be keeping you in my thoughts!

    HappyAnyway,

    sorry to hear about WBC - disappointing indeed, but Neupogen shots will take care of this.

    To all great ladies over there - we will get through this! Bon courage!

  • HappyAnyway
    HappyAnyway Member Posts: 380
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    MarthaMW, sending you positive thoughts. I want you to walk into work with your new haircut acting like you own the place!

    Hi Buttercup2101. Prior to my AC, I was administered two anti nausea meds and a steroid. I have a prescription anti nausea med. No other steroids for me. My worst day was day 2. I woke up unable to use the restroom. I then went excessively for the remainder of the day and next morning. I agree with everyone else. Drink lots of water prior, then continue. The most concentrated amount Adriamycin was expelled in my urine before I even left the treatment center, and I was only there for two hours. I drink 2 liters a day and was told to drink between 2-3. Feel free to ask questions. We're here for you.

    A SE that I have is low body temperature. My normal temp is 97.9. Mine has been ranging from 96.1 - 97.4 The np told me not to worry unless it gets down to 95.

    Thank you all for your concern. You are an amazing, supportive group of people.


  • VeeBee
    VeeBee Member Posts: 30
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    Martha u are becoming my most favourite warrior!! U walk into that place of employment and show them who’s a fighter!! I envy your strength to work through this process. I’m a big chicken and can’t. I work in a bank and not sure how I could ever do it. U my dear are the strong one in my eyes! And if ppl ask questions let your pride show. U are fighting the great fight!! And they see it. I know the hair thing sucks I’m not liking mine either now as it hurts so bad, the back of my head feels like I just released it from a pony tale and much chest and back are in so much pain!! I can’t stay awake and this nausea is kicking me down. I wish u luck u work and show them who’s boss!!!

    We are here for u to vent or just share ur day with us. I’m here for u!!

  • mpv459
    mpv459 Member Posts: 83
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    Getting ready to rock and roll 4 rounds of AC on Thursday (5/9) First round then 12 rounds of taxol..Guess of am ready to the party to begin and END. Any suggestions to make thing better the next two month.. Very worried about SE's... Advise welcomed. :)


  • Alicesneed
    Alicesneed Member Posts: 78
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    Hopefully this doesn't turn into a whiny rant - but here goes. I had my first treatment of 6 last Tuesday - mine is TCH+P and took about 6 hours. Day of and day after went smoothly. Was so buzzed on steroids on day 2 it was crazy. Day 3 (Thurs) I crashed and burned and it's been challenging since (Day 7 today). Biggest issues: no appetite, lethargic & nausea. Nurse told me going out the door that I probably wouldn't have nausea - boy was she wrong. And I think that is the name of this game - nobody knows how YOU are going to react. Most of us have a slightly different cocktail and nobody knows how it's going to hit YOU. I drank tons of water and ate high-protein, low-fat (in other words I tried to prep as best I could and do what they suggested). I am now so sick of saltines and plain pasta! And if I try and introduce anything else I'm running for the bathroom. My BP is staying way low (88/59) - not sure that is a SE or not and I'm just dragging. I thought I would be one of those down for a day then bounce back pretty good - boy was I wrong! I've lost 7 lbs (from 144 day after chemo to 137 today) and got zilch on the energy scale.

    I don't share this to freak anyone out (which I hope it doesn't - remember I'm on TCH+P which I'm not sure too many others here are on) but to provide some reality and help as much as possible. I myself like to have a realistic picture of what is to come and I didn't see this coming (or at least the extent). I see the nurse practitioner this afternoon and will share more after I meet with her.

    Also - I know they give you all these 'tips' to ward off SE but is anyone else driving themselves crazy with 'eat this, don't eat that', wear nail polish so you don't loose your nails, but don't cut your nails because you might nick yourself and bleed, swish your mouth out frequently to combat mouth sores but don't floss your teeth, etc. (okay - there was the rant - SORRY!) LOL

    On a positive note - the sun was fabulous here in Ohio yesterday and it definitely rejuvenated my soul. I've been walking every day and that does help. I am going to go to an acupuncturist tomorrow to talk about managing side effects better. Pushing myself to remain positive and focused on beating this beast (although like some of you have mentioned I feel like it's not me - I'm not really in this spot at this time. It's like - NOPE - I can't POSSIBLY have Can$er - must be someone else you are talking about).

    Onward we go! Peace to all of you on this Monday morning.

  • mountainmia
    mountainmia Member Posts: 857
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    Alice, I'm sorry you're having such a time. Sounds frustrating as much as anything else.

    YES I get your rant! Trying to know what to expect and to prep for it is confusing! Well, you might be constipated, so eat this, except you might have diarrhea, so everything we just told you, do the opposite! And yes on the personal hygiene issues!

    Today I had my surgery follow-up. Everything looks good from my lumpectomy and SNB, except I have an egg-sized lump at my lymph incision, which is not fluid seroma, so can't be drained. BS said it's more solid gunk and will just need to go away on its own. It actually IS smaller now than a week ago, so I'm not very worried about that. Besides that I have cording in my arm that is painful and limits my range of motion. She said it was worse than she usually sees and referred me for physical therapy. Fortunately I was able to get an appt TODAY, so at least I should get some help started.


  • HappyAnyway
    HappyAnyway Member Posts: 380
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    VeeBee and Alicesneed, I'm sorry that you are not feeling well. SE suck. Rant away. I'm listening. Sometimes it's just nice to be heard.

    Alicesneed, I never know exactly how much to share. It was awkward for me to mention my side effects, but I did. I, like you, want to provide real information in hope of helping others without freaking them out. You are absolutely right about our side effects being uniquely ours. The unknown is the hardest part. I felt as though I was sucker punched on Friday by my low WBC. I had felt great! I was told by my nurse that there is no way to know, other than lab work, if that's the case. If anyone knows otherwise, I'm listening.

    mpv459, I'll get back to you with some tips.

    I went back today for more lab work. Thank God, the Neupogen did it's job. My WBC climbed from 1.3 to 6.2! It caused my spine to ache, but was absolutely worth it.

    On that note, be well everyone. I'm going to sneak in a nap before school gets out. I had my first nearly sleepless night last night.




  • HappyAnyway
    HappyAnyway Member Posts: 380
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    Sorry MountainMia, I took forever writing my post. I just read yours. I'm sorry about the lump, but am glad that it's shrinking. Good luck with physical therapy!

  • Bklynesq
    Bklynesq Member Posts: 1
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    Alicesneed, I’m with you! I also started TCHP (I had my first of 6 treatments of the T&C last Monday) and I was also kind of taken by surprise with the SEs. I started at about 145 lbs and am down to 137. Trying to eat whatever and whenever I can but nothing tastes good or right. Lots of noodles, rice potato rolls...actually the one thing I’ve been able to enjoy is a Philadelphia soft pretzel from Wawa (if there are any Philly/NJ people here, then you might understand this lol!). Since day 3/4, My SEs have been mainly lethargy, some nausea, stomach upset and dry mouth. I feel like today I’m bouncing back but my mouth still isn’t right. Does anyone else have this issue? It’s almost like like have a sore throat. Trying to drink as much as I can and also using Biotene.

    The other thing about your post I identified with was that it almost doesn’t feel real. There are times when I have an idle moment and I can’t believe that I’m sitting there as a cancer patient trying to endure side effects of chemo! It’s absolutely shocking every time I have this ridiculous catharsis. It last comforting to know that I’m not the only one who feels like an impostor.

    Finally, thanks to everyone who shares on here. It’s so helpful to hear others’ experiences and questions and tips and feelings. Thank you thank you thank you.

    Wishing everyone a strength, endurance and a good day.