Starting Chemo May 2019

Options
1101113151657

Comments

  • G1973
    G1973 Member Posts: 66
    edited May 2019

    So good to read up on everyone. Sounds like we are a bunch of tough girls. We got away this weekend to the lake. I did not make it on the boat, but it felt so good to be on the dock and watch the boats go by. My 2nd infusion was a little harder to recover from, but I can feel that Big Bertha is loosing her battle. The tumor is definitely getting smaller. Is it weird that I don’t want to feel it every day? Guess I am worried it will grow again....

    We did the ceremonial shaving this weekend. Had a small meltdown when I brushed my hair and it stayed in my hand 😩. It feels much better now. I keep talking to my eyebrows and eyelashes to stay with me!

    Peace and positive thought to all!!!❤️❤️


  • MountainMia
    MountainMia Member Posts: 1,307
    edited May 2019

    Here is a photo of me last October, at a ruins site near Cuzco, Peru. The site is called Sacsayhuaman. I always think of it as Sexy Woman. I usually don't like photos of myself but I love this picture. It is full of joy and strength, and you bet I felt sexy. When I was in Peru I thought a lot about my life and felt unusually peaceful. If something bad happened, I could handle it. Life was good. I was strong and healthy and my relationships with people were in a good place.

    Now what I want, of course, is to feel that strong again, and that secure and confident. I believe I'll get there. I believe we all will.

    image

  • HappyAnyway
    HappyAnyway Member Posts: 446
    edited May 2019

    You're beautiful MountainMia! You'll be beautiful with or without hair. Have a great time with your kids and grandchildren.

    G1973, sounds like Big Bertha should be demoted. I vote for Little Bertha. I feel you on the eyelashes and eyebrows. So far, so good.

  • jrominger
    jrominger Member Posts: 349
    edited May 2019

    It is a small world. Our daughter is at FMC in Flagstaff, where we also live. CTCA has been super attentive and amazing so far. Come up to God's country this summer :)

  • jrominger
    jrominger Member Posts: 349
    edited May 2019

    So God is good once again!! Nat's ANC came up from zero to 3.9!!! So we will head down to CTCA tomorrow for round #2!!! We will get her beautiful hair buzzed as it is coming out by the handfuls. I will mention Neupogen as well while we are down. Nat does get the Neulasta onpro and it must have worked, just took awhile. We were told that the taxol (12 weeks as well) is not as hard on you and if you do it every week verses every other week the SE are supposedly even less. We'll all have to chat about that when we get there. As Nat says one day at a time. We also will be half done tomorrow with the AC, praise God. Hang tough everyone and we will keep you posted.

  • HappyAnyway
    HappyAnyway Member Posts: 446
    edited May 2019

    Great news, jrominger!

  • MountainMia
    MountainMia Member Posts: 1,307
    edited May 2019

    Hurray hurray, jrominger! Hurray for Nat and for you!! What a relief! Half done is an important marker!!

    When she is getting her hair cut tomorrow, have her imagination that we are all standing with her, next to her. Because of course, we are.

  • Micahray
    Micahray Member Posts: 6
    edited May 2019

    Sorry for the deleted threads. I will incorporate here.

    As I read through I see so much care, concern, comradely...I am so glad I found you. I loved seeing your strong picture MountainMia. Gave me a face to pray for. I'd like to see the rest of you.

    Mountain Mia...your comments brought tears. Of course you are right❤️❤️

    HappyAnyway! The wedding will be wonderful distraction and such a fun time with everyone together. Last time I hunkered down...this time, not a chance😊.

    I had no idea I had thrush until it completely covered my tongue. Going to take a while to rid of it, I guess. Good to know it might come back as I will be ready!

    OK UpstateNYer, looks like we are on similar paths. You are 12 days ahead of me. Sad we have to meet this way. I will pray that this week’s SE’s are fewer and milder❤️

    Let us both find the peace that comes from understanding. I am grateful I posted.

    Thanks AliceSneed! There is hope, but clearly I need a good plan going ahead I appreciate you!

    Jrollinger: what a gift your wife has in you! I am gathering friends with scarves to design looks for me with directions. Found on Pinterest. Might be fun

  • Micahray
    Micahray Member Posts: 6
    edited May 2019

    Mountain Mia...your comments brought tears. Of course you are right❤️❤️

  • Micahray
    Micahray Member Posts: 6
    edited May 2019

    thanks AliceSneed! There is hope, but clearly I need a good plan going ahead I appreciate you


  • Micahray
    Micahray Member Posts: 6
    edited May 2019

    OK UpstateNYer, looks like we are on similar paths. You are 12 days ahead of me. Sad we have to meet this way.

    Let us both find the peace that comes from understanding. I am grateful I posted

  • Kimmh012
    Kimmh012 Member Posts: 87
    edited May 2019

    Glad to see good news from everyone and Looks like we all are moving forward. I have round #2/6 TCHP on Monday. Then leaving Central NY for 15 hour drive to Goshen, IN for 2 week vacation, finger crosed.

    My hair is coming out fast, hoping to make it until Sunday when my little grandsons can see my hair get shaved.

    For Thrush, I had it too. Tip or Trick is to suck on ice during Taxol or Texotere, but if you have it now rinse 100x a day with warm salt water. Your doctor can also send in a script Nystatin and you can make Magic Mouthwash (equal parts liquid Benadryl and Maalox and a little oralgel, Google receipe)

    Neupogen is a generic of Neulasta.

    Keep moving forward...


  • brittandherboobs
    brittandherboobs Member Posts: 37
    edited May 2019

    Hi Ladies! Happy Thursday.

    Today is my first day in the chemo chair with AC #1/4.

    I’m thinking about the strength of all of you on this very scary morning.

    I hope everyone is having minimal & manageable side effects, and for those who also have treatments today I hope it all goes smoothly.

  • LaCombattante
    LaCombattante Member Posts: 226
    edited May 2019

    Welcome Britt,

    Sorry you have to join us but together will master this journey. Hope your infusion was uneventful and SEs are not too bothersome!

    I am at the mid point, had two EC infusions by now (here they use epirubicin instead of adriamicin)and SE have been very manageable.

  • UpstateNYer
    UpstateNYer Member Posts: 387
    edited May 2019

    hi all

    Kimm, have a safe trip, hope you have minimal side effects after treatment.

    I had my second of 4 yesterday. Got an rx for Percocet in case bad headache happens again on day 3. Taking Claritin as well for 6 days. Thanks for that advice everyone.

    Mountainmia, loved the pic. Hope your head buzz goes well. I did my stubble a couple of days ago in the shower. It was not too bad.

    Micahray hello to you, thanks for the kind words

    Happyanyway. You always are so upbeat. You are such an inspiration.

    Jrom- keep up the wonderful support you are giving to Nat. You are special.

    April- hope you're doing well with minimal se's.

    Prayers and love to all on this forum. We will get through this together. Pat

  • HappyAnyway
    HappyAnyway Member Posts: 446
    edited May 2019

    Jrominger, I hope Nat has minimal SE.

    Brittandherboobs and Kimmh012, you, too, minimal SE.

    Micahray, I'm glad that you found us.

    UpstateNYer, I'm glad that you have Percocet. Of course, I hope you don't need it. How are you feeling today?


  • UpstateNYer
    UpstateNYer Member Posts: 387
    edited May 2019

    hi happyanyway, I am feeling ok today. Kind of overdid it with planting flowers and tomatoes in the yard today, so a bit fatigued. Neulasta onpro just completed. Got to step into the shower to remove it. Hope everyone is doing well.


  • MountainMia
    MountainMia Member Posts: 1,307
    edited May 2019

    I will mope for just a moment. When I come back later I'll be more sociable.

    Mope: my son will not be coming to visit after all. It is not avoidable, and it's because his baby (almost 8 weeks old) needs medical care. He absolutely MUST be with the baby, so it's the way it has to be. But I was so looking forward to seeing him, and I miss him.

  • HappyAnyway
    HappyAnyway Member Posts: 446
    edited May 2019

    UpstateNYer, I'm jealous. ;) I grow veggies in a raised bed in our backyard and in pots on our deck every year. I haven't done it yet this year. I like to plant tomatoes, bell peppers, squash and zucchini. Hmm. Maybe I can get the rest of the family to help.

    Get some rest.

    Praying for you and everyone else.

  • HappyAnyway
    HappyAnyway Member Posts: 446
    edited May 2019

    I'm so sorry MountainMia. Keeping you and your family in my thoughts. Big hugs.

  • UpstateNYer
    UpstateNYer Member Posts: 387
    edited May 2019

    hi happyanyway, I am feeling ok today. Kind of overdid it with planting flowers and tomatoes in the yard today, so a bit fatigued. Neulasta onpro just completed. Got to step into the shower to remove it. Hope everyone is doing well.


  • UpstateNYer
    UpstateNYer Member Posts: 387
    edited May 2019

    happyanyway.. Planting would be a great project for your girls to help with. But, I am assuming they may not be into it. It is a good diversion and really helped my mood today. My social worker called today and is going to set me up with a therapist. I just need to speak to someone one on one. I have never spoken to a therapist in my life, but am feeling a bit overwhelmed by all of the twists and turns of my situation. I have days where I am dwelling on the negatives. I will post any insight he/she gives to me.

    Mountainmia .. Sorry your son can't visit. Prayers to the baby as well. Hope that his baby recovers so he may visit you soon. You are certainly allowed to mope.

  • April0315
    April0315 Member Posts: 223
    edited May 2019

    MountainMia.. sorry for the disappointment and hope the baby is ok.

    I am pretty darn miserable, the nausea and gagging, I got my hair cut yesterday bc it's falling out rapidly, It's a pixie cut, I want to say it's cute, but I really don't like my hair this short. and my scalp is still super tender.

    BUT... halfway done with AC, I just keep focusing on that.


  • brittandherboobs
    brittandherboobs Member Posts: 37
    edited May 2019

    Thanks for the well wishes everyone. This community keeps me going even though I don't post often, I'm reading everything :)

    MountainMia, I'm sorry about missing your son. I'm sure he is missing his mama right back (I know how much I miss my own mom when I'm away). Definitely will be thinking about you guys and hope the grandbaby has a speedy recovery.


    April, sorry to hear you’re feeling crappy but congrats on getting to the half way point... it will be nice when the light at the end of the tunnel becomes a bit brighter

    SE after AC#1 yesterday were a bit worse than I expected, but not intolerable. Lots of foggy brain, some nausea but never enough to vomit. Also had a fair bit of weird abdominal pressure/pain. Added some OTC gravol to my prescribed nausea meds and that seemed to help LOTS. I got to sleep through the night without feeling too bad.

    I woke up today feeling... completely normal? So normal I could almost forget about the craziness of yesterday. So I'm enjoying today, it may not last but I'm focused on enjoying the good times now :).... I'm expecting days 3-4 to be the worst SE-wise... so who knows what is to come.


    Hope everyone has a GREAT Friday! (The weather here in southern Ontario is beautiful, may get out in a sundress to do some gardening).

  • jrominger
    jrominger Member Posts: 349
    edited May 2019

    Good morning! Nat is doing really well this am after 2nd AC chemo. We shaved her head as her hair was coming out by the handfuls. She is way cute. Makes her blue eyes pop! Genetics came back and unfortunately she has the BRCA2 Mutation. So we for sure will have the double mastectomy and will also have the ovaries and fallopian tubes removed. Wish we would have known 10 yrs ago and we would have done it then and perhaps avoided all this (?) Our 2 kids will now have the genetic testing. Praying the don't have the BRCA2 so we won't have to worry about our 6 grandkids. So 1/2 done with AC!!! Off for a walk today. 2 more AC then 12 T's. Oncologist PA believes nothing in her nodes and therefore is hoping no radiation after DM but won't know until then. Sure praying for everyone here. Hang tough and let's do this!!!!

  • Kimmh012
    Kimmh012 Member Posts: 87
    edited May 2019

    jrominger, glad everything is going well...how old are your children? MyRisk counselor told me to have my 2 girls wait til they are "established" with life insurance, etc...my girls are 29 & 27.. she said they would not be able to get insurance if they test positive, just a thought.. I understand about the ovaries, grrr, I had hysterectomy 5 years ago but doctor left my ovaries in, uggg, maybe slight chance this could have been avoided... some research says yes, some researchers say no...hard to know ... Hang in there, one day at a time...

  • Alicesneed
    Alicesneed Member Posts: 80
    edited May 2019

    Hey everyone. I've been busy with the Sister-in-law visit so haven't posted much. Good to catch up. Sorry to hear some are having rough days. Keep on keepin' on!

    Visited with NP today. White count is down (as expected - I'm in week 2) but not so low that I need nuelasta - so that is good. Was hoping to go to a festival this weekend but guessing I should stay home in my bubble so as not to worry about catching something. It's beautiful in Ohio today.

    Upstate - I think (and hope) you'll find talking to someone about what you are going through to be helpful. I know it always makes me feel better.

    MountainMia - so sorry you don't get to visit with your son. That's a big disappointment and I'd say you are allowed to mope!

    Britt - sounds like you are doing well! That's great. Indeed - take the good days when you can and roll with the bad ones. Luckily they do pass!

    jrominger - sorry to hear about the BRCA but good to know up front and now your children & grand children can be aware. 1/2 done with AC - time to celebrate!

    My next treatment is June 11 and that will mark my 50% done. Was hoping to take a little trip late June but had a curve ball thrown at us yesterday so won't be able to go. May have to plan it for July! Planning stuff is what I like to do!

    April - push for more anti-nausea drugs! That was one thing I learned after my miserable first round - they have an arsenal of other stuff to help curb SE's. While I don't like taking more junk - I dislike the SEs even more. So now I'm taking stuff around the clock to combat SEs. Hope you feel better soon! Hang in there.

    Hope everyone has a good weekend. I'm going to find something fun and positive to focus on - hope you do as well. (maybe a nice long ride in the jeep with the top down - followed by ice cream of course!) Cheers!

  • jrominger
    jrominger Member Posts: 349
    edited May 2019

    Kimmh012, Our kids are 34 and 32. You are correct about life insurance but there is a federal law that health insurance can not discriminate based on test results. The statistics are overwhelming having the BRCA2 but with Double mastectomy and ovaries/fallopian tube removal the chance of recurrence dramatically drops. As our son says, you won't be breast feeding any more so get rid of them :) The genetic testing and statistical data are interesting. Hopefully the kids will test negative, it does not skip generations so our grandkids would be in the clear. We'll see. Finally in the 70's in N. AZ We'll be out and about in this beautiful weather. We had snow on memorial weekend :( God bless us all.

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited May 2019

    People, I know I am a broken record about fasting but the protective effects of a brief fast prior to chemo for your HEALTHY cell is what reduces SEs a lot. This beneficial effect has been proved in mice and studies are ongoing w people. The mice had better kill rates from chemo *and* fewer SEs.

    When you fast, your body thinks "hey, no food coming in... I'd better purge any damaged cells-- to reduce the number of cells needing to be fed-- and also tell my healthy cells to hunker down and go quiescent (use less energy) till I get fed again."

    The chemos we take all go after the hyperactive cells, the fast-dividing cells... not the quiescent ones. So digestive tract cells, marrow, and other fast-dividers get hammered by the chemo -- even though they aren't cancer cells. Fasting helps our healthy fast-dividers quiet down, but only makes the cancer cells more ravenous.

    REALLY worth trying. I know it's hard but it is way less hard than the SEs in my opinion... After the first time i fasted, the difference was so extreme that I was convinced to do it every time.


  • Kimmh012
    Kimmh012 Member Posts: 87
    edited May 2019

    santabarbarian, do you have link or something to tell us more, and a how to?

    How many hours before, how many hours after, can ya eat anything, just protein or nothing?

    Thanks for the info.

Categories