Starting Chemo July 2013

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  • GraceB1
    GraceB1 Member Posts: 213
    edited July 2013

    Mellie289 -  I still have nausea 19 days out. Not looking forward to the 3 1/2 hour car ride up to chemo much less another infusion on Fri. I'm going to take zofran before I get in the car and another before I come home. And I'm going to take the meds regularily and work a lot harder at staying hydrated hoping that I'll feel better this next time. The only rash I got was from the tape around my port. 

    What supplements are you taking to prevent neuropathy? I had some after a back surgery and really don't want to do that again.

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  • Mellie289
    Mellie289 Member Posts: 156
    edited July 2013

    Grace - I should say that My MO didn't recommend any supplements, but I thought I'd give it a try based on my own research. I'm taking methyl B12 (methylcobalamin) a form of the vitamin that seems to be more specific for neuropathy. I learned about the B12 differences a few months back when I was researching my SO's cat. She has diabetic neuropathy. There are some reports of methyl B12 helping to reverse some of the symptoms. I figure it can't hurt since it's a water soluble vitamin and I'll just pee out any excess! Same for some other vitamins and a daily fish oil. 

    I've also got lipoic acid and acetyl L-carnitine. I'm not taking these daily though. There was a recent study published (last month) saying that acetyl carnitine could make chemotherapy-induced peripheral neuropathy worse over 24 weeks (although it was better after 12 weeks). Lipoic acid is another one that has been tested a bit for relieving symptoms of neuropathy.

    I'm not endorsing anyone to take these. The evidence so far doesn't show any protective effects of supplements in onset of neuropathy. I think the real benefits have been seen in the improvements of other neuropathies (not caused by chemo). I'll quote from a review on various studies: 

    "In summary, clinical evidence for the efficacy of these drugs is sparse. Consequently, no explicit recommendations on neuroprotective strategies can be given yet except for the importance of identifying high-risk patients before starting chemotherapy. In the future, trials concerning neuroprotective agents should continue. Meanwhile, alternative dosing regimes, early detection and treatment modification schemes are necessary to limit CIPN."

    I guess I feel like I need to try to do something to prevent it. I'm happy with my MO's choice of docataxel versus paclitaxel after reading this too:
    "The incidence of docetaxel-induced peripheral neuropathy is much lower than that of paclitaxel-induced peripheral neuropathy (1-9% versus 30%). The symptoms are similar, but they are usually mild and disappear spontaneously after discontinuation."

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  • JeriGrace
    JeriGrace Member Posts: 128
    edited July 2013

    Hey Firecrackers!  Last day of July - will we still be Firecrackers tomorrow?  Smile  (Sorry, I'm just a smiley face kind of person, probably the teacher in me, but I know it annoys some people.)  Just had a long talk with my MO's nurse and have discovered that absolutely no one in the world should take medical advice from me. If you want to know how to teach your kid to read, I'm your girl however.  So scrap my crazy idea that having diarrhea contributed to my urinary infection.  She said it was most likely dehydration and consequently not peeing enough.  She said the Neulasta worked just the way it was supposed to and kicked in at the expected time. In the future she said I will probably have weekly blood counts done which I think many of you already have but it doesn't seem like it was my doctor's standard practice until you show the need for it. The thing I'm most nervous about is that they are discussing what to change in my chemo protocol.  The choices are to just lower the dosage of taxotere or replace it with Abraxane, which I know nothing about. Waiting for an appointment with the MO but glad to get the heads up from the nurse so I can be prepared for the conversation.

    I have been educating myself a little more about lymphedema.  Lots of good info on these discussion boards.  It appears that there is not enough knowledge about it even among health professionals.  I'm sorry for those of you going through this because it is just one more challenge right now. Thanks for making us aware of it.

    I have an appointment to shed the hair on Monday.  Hope it makes it until then.  Nocompromises, I was wondering if you have had any "Samson effect" on your golf game since since losing your hair.  :)

    Thinking of all of you in the middle of round 2 and hoping for few side effects and lots of good days. 

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  • Vilia
    Vilia Member Posts: 30
    edited July 2013

    Ladies, my best wishes are with you all.  You are so brave and seem to stay so optomistic.  You are in inspiration.  To all who are due for your next chemo and are still suffering from the last, my prayers are with you.

    My present problems are comparitively minor:

    Zits anyone?  That seems to be my problem right now and I'm 59!  I'm breaking out like a teenager! That, a sore tongue, bit of a headache, indigestion and a voracious appetite at mealtimes (which I'm trying not to react to because I assume it's the steroids).  Then there's the general feeling of weirdness and not quite being at the top of my game.  Oh, and the eyesight is definitely blurrier ... keep trying to clean my glasses off.  I assume things get worse with more treatments.

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  • puppymama09
    puppymama09 Member Posts: 77
    edited July 2013

    JeriGrace, I feel more like a puff of smoke right now, not really a firecracker.Frown

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  • GraceB1
    GraceB1 Member Posts: 213
    edited July 2013

    Mellie289 -  Dosetaxel is what I'll be switching to in Oct. I'm glad it's the lesser of the two evils. 

    Vilia - I started taking Prilosac for the indegestion and it's really helped. 

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  • Rambo50
    Rambo50 Member Posts: 140
    edited July 2013

    Mellie - I suffered from some minor nausea during week #2 and took some of the fast-acting Zofran which worked like a charm :)  Hate your having rash issues - what are they saying?  Allergic reaction? Glad the IV works well for you, and thanks for the well wishes for today!

    My Round #2 went well:  Here's HOW -  MyMidlifeMeander

    Sheila and Soriya???

    Now I play the waiting game... :)

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  • Nocompromises2013
    Nocompromises2013 Member Posts: 292
    edited July 2013

    Hi ladies

    Can't wait for #2. Tmrw ..Bring it on

    JeriG. My Samson effect started on the steroids ( yeah yeah. I know they were only corticosteroids but I can dream ). My drives have been really long. Or maybe I could claim the my right boob was a hinderence as now i can get a full swing right through. Hehe. ( no it wasn't THAT big :)))).

    Seriously though reckon it has been great for lymph node recovery really stretches those tight muscles on sides and under arms. Best way to try and avoid LE IMHO.

    Never mind AUG we will always be July firecrackers. - Into cyber infinity and beyond.

    Have a geat day firecrackers

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  • Mellie289
    Mellie289 Member Posts: 156
    edited July 2013

    Vilia -from what I've read, the chemo rashes come in two flavors: zits or the red itchy one I have! I called my MO's office and they told me I could use this steroid cream I have sitting around from a previous issue. Hopefully, it will be gone soon.

    Lynn - they said it could be from the Taxotere or one of the antibiotics I'm on. It's not possible to say. Two more days of the antibiotics! I'm glad your second round went well. Wishing you an easy time with the after effects now. I didn't know about the wearing masks to start up the port... huh! Thanks for sharing your blog here!

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  • LanaM
    LanaM Member Posts: 142
    edited August 2013

    Started to lose my hair today (day 13) so took control and had my hairdresser shave my head today! My wig seems to be pretty good - we'll see what everyone at work says tomorrow! Losing my hair just tells me the chemo is doing its job! I also have an appointment tomorrow for my prosthesis - cant wait to get that! Then Friday is chemo round two for me - hope it goes as well as round one! Proud to be a July firecracker! Hugs to all :)

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  • JeriGrace
    JeriGrace Member Posts: 128
    edited August 2013

    Puppmama, sorry you're not feeling very firecrackery today. The good thing is that we know how this thing goes in cycles of up and down. Here's hoping you'll be sparkling again soon. :)



    Lynn, your blog is really beautifully done. I feel like I know you so much better now. You're also doing a great job of educating people about all things BC. Once a teacher always a teacher! Thanks for sharing it with us.

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  • RealityCheck
    RealityCheck Member Posts: 57
    edited August 2013

    Hi Firecrackers! Just me checking in and to say hello and good healing ASAP to all! I started losing my hair Monday day 11 of first chemo treament. My mouth sores are healed and I am eating with no issues. No nausea, no diarrhea, no constipation (Aren't I just a freaking ray of sunshine?) DH shaved my head after dinner this evening. Everyone wants a picture. Why? Didn't they like me with hair? Are they going to frame it and have it sitting on their knick knack tables or hanging on the wall with other friends and family? Puhleasseeee. Let me get used to it before we call Olan Mills (remember professional photographer? Am I showing my age now?LOL) My next chemo treatment is August 8th and primary doctor says it will knock me on my behind. If that is the case hope you ladies are still talking to me and will be a shoulder or adviser. Big hugs to all and Heal ON Ladies! Heal ON!

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  • Nocompromises2013
    Nocompromises2013 Member Posts: 292
    edited August 2013

    Reality check - know what u mean re the photos. I sent one to my MiL and next thing my BiL is ringing me to commiserate !!!!!!!!! Who knows where else she had sent it. NOT HAPPY. I bit the bullet and put it on fb the next day. But even sooooooo.

    I am a week ahead of you. So let's see if I get knocked about for #2 tmrw good luck for next week



    LanaM - snap. :)



    Lynn. Your blog was really good I agree with JG Definitely puts a face and family to the monicker. My DH refused point blank to join my shave party it might not grow back for him :).

    His work told him yesterday he has to go up to Darwin for a couple of FIFO stints. 3 weeks on 1 week off. They have been really supportive for the past 6 weeks. So I guess it had to happen.

    Life carries on. :).

    NC x

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  • soriya123
    soriya123 Member Posts: 662
    edited August 2013

    Rambo, my second chemo will be on Aug 7. I had HerceptIn weekly for 2 week. I am glad you're doing well on round 2.



    Ladies, what's up with eyes blurry vision....I think I have that issue too. I had headache for the past 3 days...whenever I tried to read something. Aleve didn't seems to work at all.



    Red rashes on my right arm, my onc & nurse said from Taxotere. So I used hydrotisone creme for it. (((Hugs to all)))

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  • Rambo50
    Rambo50 Member Posts: 140
    edited August 2013

    Lark, love that you "took control" with the head shaving and were able to find a wig :). When I wore mine out for the first time on Monday I felt like someone out of the 60s!!! I typically wear my hair in a pixie, so even this short wig has too much volume for me - at least my mom likes it ;-)

    Great about your prosthesis too! I love mine

    I know many here who've had an mx are getting reconstruction, and though I'm not a candidate right away, I'm not inclined to go that direction anyway (potential risks with my autoimmunity, etc.), plus, I've got to have my other one removed after chemo due to testing BRCA gene positive - so I'll just pop another "sister" in my new comfy bras!!! All was covered by insurance with no problem :). Only problem I've had so far is needing a sports bra, but we've got one on order!



    NoCompromises, hope your rash subsides quickly, and best to you with round #2 !!! My hubby's work has been flexible too, but he's getting lots of after-hour calls these days :(



    Realitycheck, glad you're having some good days, and I feel you with the bald pix ;-). I just threw mine out there with my blog and my couple pic (hubby shaved his too) on fb - it let some people know what was going on without a message or call from me, and doing the blog thing is therapeutic - and yes, JeriGrace, the teacher in me :)



    Quick round 2, morning 2 update:

    - steroids kept me wired, but I took melatonin (thanks, Mellie!) and was able to get some sleep, though up on the hour to pee ;-)

    -they've also already made me puffy, but I know now this is temporary, so "fat clothes" are in order for a few days!

    -had a bm! Yay for me! Took 4 days last round

    -got the sinus pressure thing with the Cytoxan again - just odd

    -started Claritin 2days back, and will continue 10 days post per onco due to last round's issues!!!

    -took doggie for a short walk and did a slow stint on my treadmill

    -so far so good! Not looking forward to fatigue days, but they'll be bearable without nausea and mouth sores. I'll start my Zofran this morning (3-4x/day), and have been following every trip to the restroom with a tooth brushing with Biotene, and a mouth swish with Biotene mouthwash. I also use the spray and gum for dry mouth in between and when I don't have a water on hand!



    Hugs to all you ladies
    Firecrackers we remain - each of us started this crazy journey with a BANG!



    ~Lynn

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  • Nocompromises2013
    Nocompromises2013 Member Posts: 292
    edited August 2013

    :(((((( but I haven't got a rash :))))))

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  • daisy72
    daisy72 Member Posts: 24
    edited August 2013

    Good morning Ladies, I'm getting ready for 'Round 2' this morning. Oh I pray the side effect are not as severe this time! I saw an oncologist yesterday (mine on vacation, how dare him at a time like this?..lol) He was very very nice though, he said the would NOT be cutting my Cytoxan dose at all, but would be cutting my Taxotere only by 20%. They think all my side effects was coming from taxotere. My blood counts was good he said, so we are on GO! Tomorrow will be the nuelasta shot.

    I also have to see my surgeon again tomorrow, I had a 7cm seroma drained from my boob (complication from my lumpectomy, terrible infection, took 3 weeks of antibiotics to clear) a few days before round 1 and a ultrasound this week showed it's back but slighly smaller only 5cm now. Boy I sure wished I'd just opt'd for Mastectomy on that side!! It's too late now, I don't believe they will do anything else because of fear of more infection, which I can not afford on this stage of the game. 

    So ROUND 2, here I come!! Thank you all for sharing your stories, thoughts, side effects, fears and LOVE! 

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  • Rambo50
    Rambo50 Member Posts: 140
    edited August 2013

    Good luck today, Daisy!!!

    ({hugs)}

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  • candi07
    candi07 Member Posts: 188
    edited August 2013

    Good morning Daisy, Praying everything goes well!

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  • daisy72
    daisy72 Member Posts: 24
    edited August 2013

    Thank you very much Candi and Rambo!

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  • Karkar06
    Karkar06 Member Posts: 21
    edited August 2013

    Hi Mellie289,

    I am glad to find this forum since there is no such support group in Hong Kong. I started my chemo on July 8, then I was diagnosed with hand foot mouth disease 4 days later and stayed in hospital for 8 days :( Went to oncologist last week and she wanted me to delay chemo for a week. On top of this have lose most of my hair and not feeling comfortable nor beautiful in my wig. Sorry not being the most positive person here... And good luck to everyone! :)

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  • Nocompromises2013
    Nocompromises2013 Member Posts: 292
    edited August 2013

    Welcome karkar

    Sorry to hear about your hand foot and mouth - not pleasant :(

    Hope your wig 'grows on you '. And you can feel more beautiful very quickly

    Wow a real Chinese firecracker to add to our eclectic group. ;)

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  • RealityCheck
    RealityCheck Member Posts: 57
    edited August 2013

    Good Morning Ladies!!

    Best Wishes today Daisy!! Hugzz to you!!

    Welcome karkar, glad you found us. Hope your doing better soon. Glad all of us are here for each other.

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  • Hannariggs
    Hannariggs Member Posts: 137
    edited August 2013

    Hi Puppymama,

        Sorry to hear you are not feeling better.  If its any consulation, I am on the same regiment as you and I feel horrid as well.  The first round went well and I was back to work within 6 days.  This time has kicked me, and after day 8 days I am still down and out.  Went to the Dr and have strep throat which is why the neulasta hasn't kicked in.  I have another infusion coming in 6 days.  I dread the thought.  How do you ladies ever get through it all.  At this point I want to quit.........

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  • Karkar06
    Karkar06 Member Posts: 21
    edited August 2013

    Thanks Sue and RealityCheck for the warm welcome and encouraging words!



    I got a question, am having a dandruff (and body rash, but i got it under control by applying non fragranced body cream 2 times a day) problem, anyone experiencing that?

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  • angelanature
    angelanature Member Posts: 179
    edited August 2013

    Hi everyone,i'm so proud of u lana and reality,ur both an inspiration,feeling really weak and having terrible stomach cramps day 16,hope i'll bounce back for chemo #3 on tuesday,makes my pity party about losing hair so stupid now i'm feeling so awful,husband worried i'm looking really skinny,down 15 ponds since tx started,at 130 though i'm not worried myself,yet.Soriya,i'm still having blurred vision and headaches too,i'm going to ask onco if i need an eye exam,it stinks because i love to read but it's almost impossible now. welcome Karka,never feel bad about feeling negative or down,we all,especially me here,have days of crying,sleepless nights worrying,and feeling not so pretty.I still have moments of shock,is this really happening to me? Good luck today Daisy and anyone else getting chemo today,my thoughts r with you. puppymamai read ur post feeling lke a puff of smoke to my hubby we laughed because thats exactly how i feel today and it was a humerous way to put it,thanks for the laugh. Angela

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  • angelanature
    angelanature Member Posts: 179
    edited August 2013

    oh,and hannariggs,this second chemo has been soo much worse than the first for me but we can't quit,we r all survivors and fighters here,women are strong and even if we can't do it for ourselves we do it for our kids(in my case),loved ones,hubbies,parents. I've put up a calendar and put big Xs through each day counting down.Get mad at this cancer and kick its butt! Angela hugs to u!!!

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  • GraceB1
    GraceB1 Member Posts: 213
    edited August 2013

    The day before I started chemo my youngest daughter had a kdiney stone, now passed. Today my son is having a kidney stone removed and I have chemo tomorrow. When it rains, it pours. Surprised My other daughter is running scared.

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  • RealityCheck
    RealityCheck Member Posts: 57
    edited August 2013

    Big Hugzzz to you Angela, C'mon girly you can do this, if we can do this you can do this! Seriously hope your feeling better soon. GraceB1 LOL on your other daughter running. Yes when it rains it pours but the storm eventually dies out and the sun shines!

    Karkar I have not experienced any body rashes like some of the other ladies. I understand it's an allergic reaction from the chemo drug taxotere. If I am mistaken ladies please let me know.

    I also wondered about how chemo drugs affect eyesight, you always hear the stomach, hair and wbc but hardly a word on the eyes. If it affects the whole body, eyes are definately included. Is it temporary or permanent? I myself am nearsighted and wear contacts or glasses. My glasses have bifocals...I'm thinking an eye appointment is due after all my chemo treatments have stopped.

    Hugzzz to all and Heal ON Ladies, Heal ON!

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  • Vilia
    Vilia Member Posts: 30
    edited August 2013

    RealityCheck, I've noticed a definite difference in eyesight, too.  I just got these glasses and they cost me an arm and a leg, sure hope it doesn't mean a new prescription.  Mine isn't a rash, it's definitely acne .. but then I've been prone to that all my life so, of course, I should expect to get it during chemo, right? ... Uugghh!

    Karkar, there doesn't seem to be anything this stuff doesn't touch.  It sounds like anything and everything gets affected, depending on who you talk to, so I'm not surprised to hear there's the possibility of a dandruff problem, too. 

    GraceB1, so sorry your family's experiencing all those kidney stones!  Those are painful! I hope they're all feeling better very soon.

    The magic mouthwash doesn't seem to be helping my sore tongue much and I notice my inner lips are getting quite red and sore now, so I just starting swishing with some Nystatin my ps gave me for thrush when I was taking anti-biotics.  Yet another typical problem for me ... yeast infections!

    So now that we're a whole mess of dandruffy, acned, rash-covered, blind and mostly bald people, maybe we could get some work as movie extras on zombie flick!  No make-up necessary! 

    It'll be 7 days since my first chemo tomorrow and, surprisingly, I haven't had any hair loss yet.  It'll probably happen all at once and then I'll be off to Hollywood Laughing! 

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