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Chemo starting December 2017

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  • diveslikeagirl
    diveslikeagirl Member Posts: 69
    edited July 2018
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    Moderators, no, that's not me.  I only wish it was.  But around here in Chicago, I'm getting comments on my hair as though I'm following a trend (instead of recovering from a beat down).  I'm planning to stop wearing my wig to work next month and hope I'll be able to try this style.  Google Images doesn't put a name to the model; at first I thought it was Pink.  I plan to go natural at work on a day when I have no deadlines because I'm probably going to have to give a 2-minute speech each time someone sees me.  Anyone have suggestions for a short and sweet explanation that will minimize questions?  I know there are people who will probably say dumb things without thinking and I'll be asked personal questions, so I went over to the threads about how to deal with that and there are some pretty snappy comebacks.  I'm going to start in a forgiving mood then escalate if I have to.

    Today I had a colonoscopy and everything was "clean."  I had been having some bleeding and they connected it to hemorrhoids (probably from the diarrhea/constipation cycles during chemo). So now I have even more motivation to strive for more veggies and fruit in my diet.  I got to put my port to use because the first nurse to try an IV in my hand was really digging around unsuccessfully.  I wish I'd remembered my port before I let her start.

    Daniz, I totally endorse you consulting your doc if something doesn't feel right.  Once our "active" treatment ends, we're left on our own to keep recurrence from happening, except for routine follow-ups with our docs.  My MO noted that since I'm HER2+, my highest chance of recurrence is in the first 2-3 years.  You can BET that I'm going to call right away if something feels off.  What's the worst that can happen?  They actually diagnose a new/recurrent cancer and I get started right away on treatment?  Because on the other extreme, I'm way beyond being a quiet mouse about my health needs; and I can't see being embarrassed about false alarms.  Apologetic, maybe.  But embarrassed, not.

     



  • Hariry
    Hariry Member Posts: 100
    edited July 2018
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    Two thumbs up, mjb!

  • moderators
    moderators Posts: 8,289
    edited July 2018
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    Three thumbs up, to all of you ThumbsUpThumbsUpThumbsUp

  • Hariry
    Hariry Member Posts: 100
    edited August 2018
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    went for review today and nurses were trying to flush the port... it failed. Leaked, told it could be defective. Tube detached from the port most probably...

    I'm so devastated! I might not need it for chemo anymore... but....

  • mjb1018
    mjb1018 Member Posts: 151
    edited August 2018
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    Oh no, Hariry! That's a bummer. I had mine replaced early on...it always flushed well, but it was a stinker for blood return. I had a fibrin sheath. It worked well for a while, now it's back to being difficult. Fingers crossed it holds up till January, then it's got to go

  • Hariry
    Hariry Member Posts: 100
    edited August 2018
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    X ray done and confirmed that the port has been detached from its tube. The fractured tube has swam into my heart! God knows how long it has stayed there!!!😢

    Oh God why has life been so harsh on me?

    Now I'm waiting to see a cardiovascular surgeon to see how and when we can fish it out

    Please pray for me

    (I remember someone has been struggling with her port, is that you mjb?)

  • diveslikeagirl
    diveslikeagirl Member Posts: 69
    edited August 2018
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    Oh no, Hariry, that sounds like something that has to be addressed right away! You are in my prayers.

  • mjb1018
    mjb1018 Member Posts: 151
    edited August 2018
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    Yikes Hariry! I'm so sorry this has happened. I'm keeping you in my thoughts and prayers. Hoping you can get in to get it removed soon. My port has just been fussy with blood return, but always flushes well. It was replaced once already and is back to it's old ways. My body just doesn't like it I guess. At least it works and is in tact. :)

  • Hariry
    Hariry Member Posts: 100
    edited September 2018
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    HI everyone,

    Just checking in and see if there's anyone around. Time flies it's been 3 months since the last RT. As mentioned earlier I've got a defective chemoport and ultimately got it removed.

    Going to see the BS soon. How's everyone doing?

    Good to be back on track!

  • mjb1018
    mjb1018 Member Posts: 151
    edited September 2018
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    Hey there, Hariry! So happy to hear from you! I was just thinking about you last week and wondered how your port situation was going. I should have posted! I’m glad to hear it’s out! LOVE your profile pic. You look great! I just had my first haircut yesterday. Ummm, trim, really. 😊. It was fun and emotional at the same time.

    Let’s see...I have just 4 Herceptin treatments left. December 14th is it! End of October I’ll have my first bilateral screening mammo, 3D this time, since diagnosed. A week later I’ll see my breast surgeon. Hoping to get my port out before the end of the year, but not sure the protocol for that. I’d like to do some reconstruction at the same time, but the surgeon I want to use doesn’t take insurance. I will be consulting with her soon. Ideally, I want everything done so I can head into 2019 without all those balls in the air. Ha ha!

    I just learned about a drug (pill) that was FDA approved for HER2+ breast cancers in July 2017..just months before my diagnosis. It’s to be taken after Herceptin for a further push to reduce recurrence rate. I was excited at first, then apprehensive and anxious. I have mixed emotions because I really want to be done with treatment. I suspect my MO will say no anyway, but will discuss at my next appointment....

    Hugs and love to all!

    ~Molly

  • Hariry
    Hariry Member Posts: 100
    edited November 2018
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    HEY mjb and everyone,

    It has been.... what.... 4months since we last chat? Time flies. Last year today I was feeling so depressed and devastated about the diagnosis. And now I'm putting on some styling gel on my pixie cut before going to work.

    How's everyone?

    My next surveillance scan and mammo will be in two months time. Since I'm TNBC there's no medications to take.

    Fingers crossed, God's grace, everything would be fine.

    Best wishes to all of you!

    Hugs,

  • mjb1018
    mjb1018 Member Posts: 151
    edited November 2018
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    Good Morning, Hariry! What a year, huh? Looking back, it flew...of course. I'm just a few days away from my original diagnosis and I can't believe it. Grateful, to say the least. I was to have 3 Herceptin infusions left - 11/2, 11/23 and 12/14. My last echo showed decreased heart function, so my infusion on 11/2 was delayed and now pending results of upcoming echo...Tentative for infusion on 11/30 and that may be my last one. I see my surgeon on 11/21 and have my echo the same day. Hoping to get my port out ASAP! I had my first bilateral mammo a few weeks ago. All clear! Hope everyone is doing well.

  • diveslikeagirl
    diveslikeagirl Member Posts: 69
    edited November 2018
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    Good morning, chemo sisters. It's wonderful to hear from you. Tomorrow will be the 1 year anniversary of my lumpectomy. I remember the uncertainty was crushing and I was just on the edge of tears most of the day before. But I had the best BS, very kind and reassuring. After the pathology came back and we learned I needed the full-Monty (chemo, radiation, 1 year of Herceptin and 5-10 years of AI), I remember coming here and finding this great group. It was a long, hard winter of chemo, every Friday for 18 weeks with every 3rd Friday a full cocktail. I was surprised by my reaction the other day as the weather got cold and I dropped my infinity scarf around my shoulders. I wore it constantly last winter and my whole body shook as I was reminded of how rotten I usually felt when I was wearing it.

    Now I'm looking at just 2 more Herceptin infusions and then port removal. I hope to get it done before New Years when my deductible resets and I have to pay health bills again. Thank goodness for insurance. I'm having my first post TX mammo tomorrow and also getting some dental work done before I go on a bone strengthening drug. I have only slight osteopenia, but the research is so strong for prevention of bone mets that my MO agreed to put me on it. A rare side effect of the bone drug is osteonecrosis of the jaw; that's why I'm getting the teeth up-to-code before I start. I also started Anastrozole (AI) in June and may have to have that swapped out for another AI because of the bone pain side effect. I'm on a 2-week "vacation" from the AI to see if the SE disappear and if they do, the MO will find a different AI for me. We're all so different in how these SE affect us.

    Mjb, is the drug you're referring to Nerlynx? I would be a candidate for it too, but my MO hasn't started prescribing it yet because of the SE and because he's conservative about jumping on new drugs. I will be anxious to hear what your doc says. I follow the Nerlynx thread on this board.

    Hariry: love your hair. I think it compliments you very well.

    I hope we hear from some of our group that has gone quiet. How are you all doing?

  • mjb1018
    mjb1018 Member Posts: 151
    edited November 2018
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    Good Morning Diveslikeagirl! So great to hear from you, too. :) I'm with you, hoping to get this port out before the end of the year! $$$ Ha Ha. I don't remember the name of the post herceptin drug. I thought it was a really new thing (maybe the one I saw is newer?), but my MO made it sound like there has been something like that for quite some time. I don't know. At any rate, it's not something he would Rx. Since it's not part of the gold standard in treatment plans (my words) and not enough evidence to support its use (again, my words and understanding of it), I won't be getting it, and I'm 100% OK with that. I feel very positive about my outcome. So far, so good!

    On a side note, I've found that there is a hand soap and body wash that almost make me gag and feel sick...They were given to me last year in December. If I use them, they remind me so much of the heavy chemo days, that I really have a problem with them. I'm so glad that my favorite fragrances were not ruined for me, as I tried not to use them. Anyone else have smells or tastes they can no longer tolerate? I find it interesting how the power of smell and taste power over so many feelings. :)

  • Dark13
    Dark13 Member Posts: 50
    edited November 2018
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    Hello my lovelies finally got a chance to touch base. It's been a hot minute since we chatted. Hugs and kisses from the Caribbean. I know its cold in your neck of the woods so i'm sending some warm hugs and smooches. I am happy that everyone is still coping by the grace of God.

    I have completed my chemo and radiation my doctor told me to go live my life don't worry or take on too much as stress is not good for me. I have to return in Dec to do some tests which starts the new baseline for monitoring going foward.

    Everything has healed up nicely. My skin is finally returning to it's colour, my fingernails have grown out but the toenails is taking it's time still dark and looking a mess. My eyelashes and brows have grown back. My hair is growing but i've decided to maintain it in a short style so its good. The neuropathy in my feet is still there but not as bad as before so I'm working with it. Got some compression socks which seems to help.

    How long does it take for the radiation site to heal up? My radiation has been completed about 3mths and the area still feel hot to me. Has anybody experience this? Maybe its in my head....sigh

    Right now I am exercising and trying to eat right, organic foods are costly. I have not juiced in awhile and i'm missing it but it's hard to keep up. It seems like everyday there is something on social media with these food manufactures and syntethic stuff in foods that are killing people slowly you have to be so careful.

    I am also on the hunt for a real strapless bra with pockets for a breast form. Not those Coobie uniboob tube top type bras. I tried them and its a big no for me. I really want to be able to wear my strapless and off shoulder clothing again. Can anybody recommend a strapless bra?

    Anyway have a great week folks.

    The race is not for the swiftest but for those who endure to the end. Kicking cancer to the curb one day at a time.

    Smooches Dark13

    image

  • diveslikeagirl
    diveslikeagirl Member Posts: 69
    edited November 2018
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    Hello everyone.  Glad to see how we are moving on.

    Dark, you look absolutely stunning with your short hair and really quite healthy.  How are you doing implementing your Dr's advice to not worry and "live your life?"  It's one of the hardest things I have to explain to family and friends that my life is forever changed. I can't "go back" to my life, I have to go forward to some kind of new life.  

    I get my port removed the day after Christmas.  I've read several places on the board that they've had their port removed in the doctor's office, but apparently my surgeon prefers out patient surgery in the hospital.  Over the year since my diagnosis, I've come to recognize how each of our treatments can be different and some of it may be due to the vagaries of our insurance coverage.   When I was in chemo, I pretty much did as I was told but I see now that there may have been "Cadillac" treatments when a Chevy would have been fine.  I'm thinking Neulasta time-release patches that cost thousands more than if I simply came back the next day for a shot.  Now I wonder if a trip to the hospital is really necessary for port removal when others have done well in the doctor's office.  Thank goodness I can fit it in before the end of the (insurance) year.

    My hair, nails, eyelashes, etc, are only slowly coming back.  I'm grateful that I was able to keep doing my strength conditioning, swimming and yoga throughout treatment.  I'm sure it helped me get through treatment better, but there's no denying that my body has had a beatdown.  I still experience fatigue and am struggling to find an AI that doesn't make me feel like I'm 30 years older than I am.  About 2 weeks ago, I developed blood clots in my left leg and now I'm on blood thinners for about 1 month (and maybe longer term, depending on the results of the next scans.  Blood clots!   Just another of those SEs that your doc says are pretty common with cancer treatment (it messes with the proteins in your blood) but you've NEVER heard or read about them in your books/research until after you get them.  I'm frustrated because I had scheduled a scuba diving trip next month that I have to cancel because diving and blood thinners don't mix.  So much for going on to "live my life."

    I hope you all had a warm Thanksgiving weekend (if you celebrate it).  Looking forward to hearing from you all.   

  • Dark13
    Dark13 Member Posts: 50
    edited November 2018
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    @diveslikeagirl: you are absolutely right you can't go back to the way things were. How I see it is that i have been given a 2nd lease on life. When you think it about so any people do not make it but God has chosen to let me live so I have decided to live each day without reservation. B4 diagnosis I use to always worry about how my family would cope if something drastic were to happen. I got sick, I had surgery, lost all my hair etc and you know what, I saw they coped very well. Yes they were worried but everybody stepped up and took up responsibilities. Everything got done.What I learnt was that they would cope because life goes on. If I am not around life goes on. They have to continue to be... So now I try not to worry about stuff I just do/fix what I could and just let the rest be. My whole perspective on what is important has changed.

    I still have neuropathy in my feet but hell I love high heel pumps...the neuropathy hurts and wearing the heel hurts....anyhow I swing it is pain so if on a given day I feel to wear heels I do it (lol) I just bear my pain and keep it moving. When I get home I just soak, rub, & elevate.

    I try not to let thoughts of recurrence enter my mind space. I try not to entertain negative people, or those who always have a remedy or cure for me to try. Even tough there intentions might be good. I try to eat right as best as I could some days I feel for chocolate and ice cream and I have it. Everything in moderation.

    In my mind, I am completely healed and I live to reflect that. I truly believe that God is still in the miracle working business and he has healed my completely. I claim it and give him thanks everyday. That's how I cope, its the only way I know how to cope.

    Smooches Dark13.

  • mjb1018
    mjb1018 Member Posts: 151
    edited November 2018
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    Good to hear from you Dark...and Dives...! Dark13, You look AMAZING!!! :)

    I'm just hopping on to say I'M DONE! Just saw my MO and was tentatively scheduled for Herceptin tomorrow. That has been scrapped since my heart function has not improved. Since I was so close to being done anyway, instead of delaying again, we just called me DONE! Whoo hoo. I'm still taking tomorrow off to celebrate with a massage, and I don't know what else yet. I have a call in to get my port removed, so hoping they can get me in pronto! It will be removed right in the office and then I'll be on my merry way. 2019 will be the beginning of echos every six months for 2 years, and normal mammo screenings and followups with my MO. I'm considering a bit of reconstruction in 2019, too, but will be on to "business as usual'. YAY!

  • Hariry
    Hariry Member Posts: 100
    edited December 2018
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    Hi there,

    It's great to hear from you girls again. And truly happy to know that everyone is doing well, mjb, dark13 and diveslikeagirl!!!

    Oh dark you look gorgeous and sexy. 'whole perspective change...' oh you just echoed my thoughts. I will never be the same since the diagnosis. I will never think the same, the world will not be seen the same.

    I try to be as active as possible, exercise everyday, perspire everyday. Plenty of fluid, more vegetables and fruits. Almost no alcohol. Stress, of course, is inevitable. But I'd take it easier. There are lots of advice what to do what not, what to eat and what not. Sometimes all these can be disturbing I don't think I can follow.

    The side effects from chemo stay: my feet still numb and fingers still stiff. Writing is difficult, n I'm clumsy when handling coins. My sinuses ache at times and the tongue burns. Menses are not here yet. It has been 6 months PFC. I am being patient and I guess I will need more.

    Mjb I hope your cardiac function will slowly recover. Dives hope that the DVT will be totally gone soon.

    Ladies, we live our lives to the fullest, even though we don't know where it leads! Have faith!

    Sending warm wishes to everyone




  • mjb1018
    mjb1018 Member Posts: 151
    edited January 2019
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    Hi all! Just popping in with a little update. Feeling AMAZING! My heart function has improved, so YAY! All is well. I think I had mentioned some possible reconstruction this year, but now that's out the window and I actually feel relieved and at peace. I learned from my local PS that a simple implant replacement (I've had them over 15 years) is not an option due to the radiated tissue damage. She said it would be like waking a sleeping lion. She suggested a free flap reconstruction, so referred me to a specialist for microsurgery in San Francisco. I saw him yesterday, and well...I simply don't have enough tissue anywhere to make it work. Say WHAT? He told me to eat more. Ha ha! I've never been told that before. Anyway, aesthetically, I really am not too bothered. Sure, I have asymmetry as the cancer side is higher, tighter and a bit smaller than my healthy side. In clothes, not noticeable. I was most concerned about continuing capsular contracture. He suggested a wait and see approach, to not think about it and address it in a year if it gets worse. Sounds good to me. If it gets too uncomfortable, he can clear out the capsule and replace the implant. If we went with a free flap tissue recon, he'd have to take from both thighs, and then still not be the size I am now (as there isn't much to take). Long surgical procedure 8+ hours and a week in the hospital. Plus, having to lift my other side. Right now, I'm happy, I feel good and have closure. I've been eating a whole food, plant based diet (no oil) since December 1. I feel great and only plan on getting healthier and will probably drop a few more pounds in the process (10 max, as I'm not overweight). Now I am joyful to focus on healthy food/healthy body! Cheers to all!

  • Swewing
    Swewing Member Posts: 27
    edited April 2019
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    Hello everyone, just checking in to see if anyone still visits. I’m all healed up and reconstructed. Now I’m picking out the tattoos for my chest. No boring nipples for me, I’m picking out flowers and vines that will go all over!

    I’m glad to hear so many are healing. Best of wishes, thank you all for your help and encouragement

  • mjb1018
    mjb1018 Member Posts: 151
    edited April 2019
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    Hey Swewing! Glad all is well!

  • Hariry
    Hariry Member Posts: 100
    edited May 2019
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    Hi mjb and swewing

    Good to hear from you girls!

    Good to not hear from the others too, as NO NEWS IS GOOD NEWS... Believe everyone is back to normal life, as I do, and busy with each business.

    My neuropathy is slowly getting better. My fringe is covering all of the forehead. Menses not back yet but libido has recovered.

    Praise be to God!

    Hariry

  • sswp
    sswp Member Posts: 61
    edited July 2019
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    imageimageWent out without a wig or head covering for the first time since Jan 2018 today. Felt foreign having the sun and the wind on the top of my head. My hair is sparse and growing very slowly. I had sparse hair to begin with. Just bought more new wigs because I love the look and plan on wearing them even after my hair grows back. Having the freedom of going without head coverings makes me feel free. imageimage