Chemo June 2010

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  • lizzyanne
    lizzyanne Member Posts: 73
    edited October 2010

    Sherry - I agree - you need to get a second opinion. You have had really difficult s/e's. Good Luck...and lots of hugs!!!

    Liz 

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  • PearlGirl
    PearlGirl Member Posts: 549
    edited August 2013

    Sherry...I'm jumping on the 2nd opinion bandwagon.  It might be the best way for you to get peace of mind. I hope you can find a top-notch medical oncologist nearby who is ready, willing and able to sort it all out for you and give you some guidance. If Tulsa doesn't have anyone else you trust, think about traveling to a cancer center a few hundreds miles away. I know that isn't easy but seems like a lesser inconvenience than all the SEs you've endured. Prayers are with you always.

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  • mitymuffin
    mitymuffin Member Posts: 337
    edited October 2010
    Sherry,  I agree you need a second opinion if you can handle the hassle of setting up the appointment and getting yourself somewhere. When you are already feeling poorly, its hard to take action but it might help with your decision making.
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  • JFV
    JFV Member Posts: 795
    edited October 2010

    sherry- OMG this is so much for you  to handle.  It does not seem fair.  I am also a second opinion person.  I also know how much work this will be for you.  But, there must be someone who can figur out why you are gettting hit so hard and help you manage.  Praying for you!

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  • Sherry9316
    Sherry9316 Member Posts: 294
    edited October 2010

    I really hadn't even thought about a second opinion because I really like my oncologist and trust him.  He serves in a medical and scientific capacity of several pharmaceutical companies advisory boards that are developing new cancer treatments.  He has also served as co-medical director of clinical research for U.S. oncology.  He has a great bedside manner and I think I keep him up at night!  He's told me before that I am a mystery and challenge to him.  But, I do think your points are valid about a second opinion.  Tulsa is pretty big, so I shouldn't have any trouble finding a comprable oncologist for a second opinion.  I'll work on that next week.  I am just stumped as to why my body is being so squirrely about chemo. 

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  • kittycat
    kittycat Member Posts: 2,144
    edited October 2010

    Sherry - maybe you should have a nice long talk with your onco about your treatment plan.  It sounds like you are getting enough chemo for all of us!  Are you on a clinical trial? 

    Latte - I also have Steroid Face.  I haven't gained any weight (actually lost about 5-10 lbs), but my face is puffy.  One of the girls at my work had to point it out to me (gee thanks - like losing my hair wasn't enough).  I actually feel puffy all over this week. 

    2 more treatments left!!  This is dragging on foreverrrrrrr.......

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  • Carrol2
    Carrol2 Member Posts: 2,903
    edited October 2010

    what does puffy face look like? I know my eyes look puffy, is that a sign of it?

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  • JFV
    JFV Member Posts: 795
    edited October 2010

    Sherry and Kitty-  hang in there!

    Sherry if you like your onc stick with him.  Maybe you need a home health aid visit post chemo,  or IV fluids, or a night in the hospital post chemo or something,  I know those things are hard to set up and pay for.  But, maybe a professional watching you post chemo would work and catch your problems early.   I really hope things get better for you!

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  • Latte
    Latte Member Posts: 1,072
    edited October 2010
    Carol - steroid face is when your face just goes really round, not your eyes, but more the shape of your face. from what i see online, it can take 2-3 months to go away after you stop taking steroids.
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  • Carrol2
    Carrol2 Member Posts: 2,903
    edited October 2010
    Latte hmmm my face was already very very round lol. Maybe no one will know lol
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  • Sherry9316
    Sherry9316 Member Posts: 294
    edited October 2010

    Oh, LOL.  You girls made me laugh today with your discussion of puffy face.  Carrol2, I am like you - my face is very round to begin with also.  I try not to look at myself in a mirror very much these days. 

    Kitty - I am not on a clinical trial, but I have made the decision that we will have a very serious and frank discussion with the onc in two weeks when I go back.  I'm really ready to stop chemo, and while my husband understands my reasons, he is relunctant to share that opinion. And I understand his point of view somewhat.  

    In the meantime, I'm trying to get stronger and better because our planned trip to Texas is next week.  BTW I believe they beat Nebraska today!  LOL!

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  • flopsy
    flopsy Member Posts: 365
    edited October 2010

    Hi, Ladies,  Hope all are having a good weekend.  I have just finished my 18th rad treatment with 12 regular to go and 4 boosts.  My skin is starting to have slight issues with tenderness, redness, and a few itchy bumps over my breastbone. 

    My weird patch of discoloration has now almost covered my entire non cancer MX side.  It has been decided that it is old hematoma from surgery 5 mths ago and I had a bleeder post surgery.  My surgeon still says nothing to do with surgery but all 4 Oncs say that it is old blood that is finally resolving.   This side has always bothered me more post surg that the cancer MX side, so it makes sense that there was a residual problem there.  Of course she does not admit that she did a lousy job on that side but as long as it heals I can deal.  My scar and chest on that side looks sunken and misshapen but not on the other side.  I have to wear 2 prosthetics on that side to match the other.  You can't tell me it is supposed to be like that because I was even before the surgery.   I will not have reconstruction because this side will never do right with the way it is all messed up but I'm okay with that because don'really want more surgery.  Also I want to be able to feel if anything comes back and don't think I could tell with fake stuff there.  Oh well, that is my saga.

    Hope all have had a great weekend and am still thinking of all of you.  Hope all that are having problems can get answers and help for I know how frustrating it is and beyond our control but you do really have to sort of guide the professionals because they see so many and so much I think they are numb to it all.  Sending hugs to all, Ginny

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  • cheyenna
    cheyenna Member Posts: 379
    edited October 2010

    hey girls, its been a week or so but ive had some problems but all is well now, i hope ypu are all well, im gonna try and get some sleep now, Taxol cocktails tomorrow morning at 8 am # 9. whew hoo!!! I pray your all well! i will catch up tomorrow nite on my steroid high.

    love to all,

    chey

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  • janny99
    janny99 Member Posts: 119
    edited October 2010

    Hello Ladies, haven't been on here for awhile as I went on a trip help welcome my new grandson into the world!!!  Beautiful little guy with lots of black hair....mommy, daddy and big brother are happy as can be!  Life IS GOOD!!!! 

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  • DesignerMom
    DesignerMom Member Posts: 1,464
    edited October 2010

    janny-  So good to hear from you.  Congratulations grandma, what a JOY that must be.  You sound great!

    cheyenna-  Sorry for your problems, whatever they are.  Hang in there, you sound strong and positive.

    Today I have my final planning for rads.  Tomorrow I begin with that madness.  Time to saddle up again!

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  • mimi9186
    mimi9186 Member Posts: 127
    edited October 2010

    Sherry, I appreciate your delima.  I had two different delays of a week each, one decreased dosage by 25%, and didn't even do the last chemo.  Did I make the right decisions?  I don't know but I do know I did the best I could under the circumstances.  Will if affect my outcome? maybe.  You just do your best, only you know what you can tolerate.  Hoping all is well for you and you enjoy your trip.

    First zap today was uneventful.  One down and only twenty nine more to go......

    Love, and Hugs, Mimi 

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  • TMarina
    TMarina Member Posts: 692
    edited October 2010

    A rads question-->  how long does the actual "zapping" take, once you get in place on the table?  For my colon cancer it was about 5-7 min.  Sometimes getting in the right position took longer than the zapping!  I think positioning this time should be easier because of the mold for the head and arm.

    Chey--> good to hear from you!  You are almost done!

    Janny--> good to hear from you as well!  Congratulations!!

    D-Mom-->find out anything new/interesting today?  Are you ready for tomorrow? :)

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  • flopsy
    flopsy Member Posts: 365
    edited October 2010

    TMarina,  My rads tx only takes about 10 minutes.  The simulation took the longest and you have to see the Rad Onc once a week so that takes a little longer.  I go in at 8:15 and am dressed and usually heading down the hall by 8:50.  Not to bad overall.  Try to keep your skin really moist because it does not take long for it to start breaking down.  I have just finished treament #19 with 11 and 4 boosts to go.  My skin is getting itchy and very red.  Clothes are getting a little uncomfortable also.  When I sleep I use my little pillow from surgery and put it under my arm and cushion the underarm and breast area with it. A small pillow of any kind will work.  It has really helped me to be able to sleep. 

    Good luck with rads.  Greetings to all my June chemo friends.  Take care and I am still praying for all of us and thinking positive thoughts too.  Ginny

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  • JFV
    JFV Member Posts: 795
    edited October 2010

    Tmarina-  I keep meaning to time my zaps and lose track whenU I get in the room.  They spend alot of time moving the table and changing the "compensators" for the zaps.  Overall on a really good day I can walk in the building and back out in 25 minutes.

    I am on day 6 a little uncomfortable, skin is sore, no visible signs of problems.

    My son and watching the NY governors debate.  One of the 7 candidates is a fromer call girl! 

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  • TMarina
    TMarina Member Posts: 692
    edited October 2010

    Thanks for the info Ginny!  I do have a small pillow from my surgery also.  And I've already been moisturizing the area.  My rad onc recommends Aquaphor, and I have a jar of that from rads last year, so I think I'm ready! :)

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  • TMarina
    TMarina Member Posts: 692
    edited October 2010

    Thanks JFV!  Geez, sore already?  What are you using on the skin?  I'll use aquaphor, but I've heard some use aloe vera gel.  I'm so glad my rad onc told me I could take a break if the skin gets too sore.  Makes me less nervous going in.  I still have problems with the skin on my 'backside" from last year!

    Did you go back to work?

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  • PearlGirl
    PearlGirl Member Posts: 549
    edited October 2010

    Janny99...Hooray for new Grandson. What is his name?

    Gin2ca...I'm right there with you. Today was rads tx # 19. They phoned me 10 minutes before I was to go out the door this morning to say that their equipment was needing to be serviced so they switched my appointment from 10:15 to 4:00. When I got there they said they need to do x-rays too. (I get that every 5 or so tx). So I got positioned and ready to go...and the x-ray componenet of the machine wasn't functioning. Great!  I did get my tx and they said they would do the x-rays tomorrow. But it makes me wonder about being zapped and the safety issues. Yesterday someone sent me  an email about the dangers of microwaved water and how it kills plants and that microwaved food is killing brain cells. I got all concerned and then I thought "crap...I'm letting them fry me with radiation every day".  How much worse can microwaved stuff be?

    TMarina...yep, positioning me in the form and the equipment set up is what takes the time with this rads stuff. The tx themselves are zip, zip...I get 4 zaps of about 15 seconds each. The machine readjusts it's angles in between each zap. I walk in the lobby, get changed, go to the table, get zapped, get redressed and leave, all within 15 to 20 minutes at the most.  

    Sherry9316...Hope you're feeling better every day.

    DesignerMom...Your first rads tx is tomorrow. I'm sure all will go well and that you'll find it a good change from the tedium of chemo. The new ABC club...anything but chemo!

    Hope everyone else is doing well and that we'll have a celebration the day EVERYONE who started in June is finished! 

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  • flopsy
    flopsy Member Posts: 365
    edited October 2010

    Bon,  .  You are so funny.  You remind me of my favorite funny author Erma Bombeck back in the day.  You should write a book of humor about Breast Cancer when this is all over and I think Designer Mom and some of the rest of us could co-author also.  What do you think?  Maybe we can get something good out of all of this. 

    Designer Mom---Congrats on joining the GLOW IN THE DARK CLUB.  Hope all goes great tomorrow.  LOL, Ginny

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  • NorthernGirl
    NorthernGirl Member Posts: 67
    edited October 2010

    Sherry:  I wish this was easier on you.... wouldn't it be great if all of us who feel a bit better could reach over and shoulder a little bit of your pain and discomfort and carry it away from you?  I like the visuals: an army of us gals pulling the weight of pain for you. You are in my prayers.

    The gals who had weekly chemo seemed to have less serious side effects. Is that an option for you Sherry?

    Re: steroid face. My sis visited on the weekend. She took one look at me and said, Oh, you still have the puffies on your face. I thought I looked normal? Even my hubby said No, but you will look normal soon. I can't wait!  No wonder I am reluctant to get out and run into my work colleagues.

    Almost 5 weeks from my last Docetaxel and I am still getting the neuropathy in my hands and feet, pain in my leg muscles and watery eyes... or maybe these are side effects from Herceptin?

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  • TMarina
    TMarina Member Posts: 692
    edited October 2010

    Northerngirl--Love the visual for Sherrry!  Well said!  As for the neuropathy, it can take a long time to go completely away--months and in some cases, years.  From my chemo that ended last Jan., the neuropathy continued to get worse for a few months, and I still had it when I started Taxol, so now, of course it is worse.  The leg pain could be left over from chemo, or according to the prescribing info I found on www.herceptin.com, it could be from the Herceptin.  There is a thread about peoples' experiences with Herceptin on the forum for those with her2 bc.

    Bon--thanks for the info on your experiences with rads! Tomorrow is my simulation!

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  • janny99
    janny99 Member Posts: 119
    edited October 2010

    So I've been catching up on everyone's posts and see that many of us are starting or have started the rads!  I start at the beginning of November (I think).  I am happy to be joining the  "Glow in the Dark Club" & "Anything BUT Chemo" club!!! 

     My grandson's arrival into this world could not have been more perfect.  I was 2 1/2 weeks out of my last FEC infusion, was feeling pretty good and my boss at work (who is also a grandma) was very happy to give me another week off of work to be in the delivery room for the little guy's appearance into the world.  He was the "light at the end of the tunnel" through this whole "chemo" thing, and what a joy it was to be there while feeling "GOOD"....his name is Aiden James, and his big brother Sean of 2 1/2 years adores him (well, sort of...lol)....

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  • JFV
    JFV Member Posts: 795
    edited October 2010

    Janny-  Congratulations on your new grand baby.  What a blessing.

    Tmarina-  I don't know what to tell you about my soreness.  It's not terrible just there.  I could easily get a dozen zaps.  I guess because I had positive margins near my chest, and a fairly big tumour and 5 lymph nodes etc, etc...  I get a heavy dose.

    I returned to work today.  It is nice to not think about cancer for a little while and everyone is very nice.  But, I am completely overwhelmed.  It is 4 pm and I want to take a nap.  I am in a first grade classroom.  But, I am walking around with a scarf on and adjusting to a new building, new routine, new kids etc... 

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  • flopsy
    flopsy Member Posts: 365
    edited October 2010

    Joan,  Glad to hear you made it back to work.  I have been doing well at work but rads is getting tough on my skin.  I have just finished my 4th week today with 20 tx and 10 to go.  My skin is very red and I have what they call radiation rash which is red itchy bumps that will drive you crazy with the itching.  DO NOT SCRATCH EVER BECAUSE THEN YOUR SKIN WILL BREAK DOWN AND GET MUCH WORSE.  I am putting cortizone in the cream I put on to help with the itcphing and it is helping.  The Rad Onc said on Monday that if my skin got any worse I would have to take a short break to heal.  I would like to continue but will stop if necessary.

    TMarina -Good luck and welcome to the club.  Hope things went well and continue to go well.

    Got word today that a 1st cousin was diagnosed last week with Stage 3 BC also.  That makes 4 of us in the family.  I am still waiting for my genetic testing.  Maybe I'll call and check on that tomorrow. 

     Hope all are doing as well as possible and keep posting, please because it really helps us all get through this.  Us "SURVIVORS" have to stick together and keep uplifting each other.  Hugs to all, Ginny

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  • Sherry9316
    Sherry9316 Member Posts: 294
    edited October 2010

    Janny - congratulations!  Grandkids are the BEST!  It is amazing to me that just when you think you love your kids so much, along comes the grandkids and you love them even more!

    Chey - good to hear from you but sorry you had a rough week.  I can't believe how the time has gone by.  It seems like it was just a couple of weeks ago and you were starting your Taxol - now, you're almost done. I pray this week is a better week for you.

    TMarina - that is sad news about the neuropathy.  I only have it in my feet, but sometimes they burn and tingle so bad I can hardly stand it.  I am grateful I don't have it in my hands and fingers.  I was hoping it would start going away soon.  It's very difficult to walk sometimes.

    DMom - did you start your rads today?  How was it?  So many on here have finished their chemo and started rads.  I'm jealous (I think).

    NorthernGirl - I was very touched by your caring statement.  I'm actually having a good day today.  My only complaint is that I'm very tired.

    Bon:  I am doing better each day FINALLY.  

    Ginny: good advice on the pillow.  I haven't used mine in a long time - it's sitting in my linen closet. Nice to know it will come in handy during rads.  

    What is the average number of rads everyone is getting?  Initially, before my surgeries, my BS said I would have to have 33.  I wonder if that will be different now given that my pathology kept changing.  I wonder why you have to have so many when you've just been through chemo that's supposed to kill all the cancer cells.

    We are leaving for Texas tomorrow afternoon.  Yippee!   This time last week I didn't think I would be able to go.  I'm really looking forward to it.  It's so peaceful and relaxing at my brother-in-law's house.  

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  • cheyenna
    cheyenna Member Posts: 379
    edited October 2010

    hello girls, I had # 9 taxol yesterday, so far so good.. i did go see a radiation ONC to see why i dont need rads when so many of us do and she was so great!!! but in the end i don't need rads, i knew that but i still wanted to know why and cover my own bases. i need to catch up on everything here. im am planning on having my mx on the other boob in late November early December, and they will do the reconstruction at the same time, im really seeing the light at the end of this dark  tunnel, ok im also thinking of having a hysterectomy, i cant stand the thought of having to ever go through this again, my thinking is if i don't have it, i cant get it!! any thoughts?there are only a few of us left on chemo, i cant believe it,yea!!! im so excited!!!

    love to all Chey

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