Has anyone started a forum for Chemo in Dec 2008?

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  • Lainey64
    Lainey64 Member Posts: 740
    edited April 2009

    Hi everyone.  Got my port out this morning.  It wasn't as simple as everyone says.  My doctor said it kind of wedged itself in there so she had to mess with it a bit to get it out.  It didn't hurt though and I just layed there and chatted with her and the nurse while she was fidgeting with it.  She showed it to me after it was removed.  It was a pretty purple color which made me laugh.  I also took a picture of it for my website.  I'm soooo glad to have it out.  I have to keep the steri strips dry but I can shower tomorrow.  My doctor said she'd like the strips to stay put for at least 4-5 days.  I was feeling a bit of soreness so I took some extra strength Tylenol.  Time for a nap!

  • Firni
    Firni Member Posts: 1,519
    edited April 2009

    Hi Elaine.  My port was purple as well.  It always made my skin look bruised.  I was surprised at how small it really was.  It looked bigger when it was in my chest.  I have a patch of clear adhesive over my incision to keep it dry.  I can take that off in three days.  Unfortunately I got stitches instead of steri strips.

  • Lainey64
    Lainey64 Member Posts: 740
    edited April 2009

    Yeah, she put stitches in mine too and covered them with the steri strips.  Weird.  It was hurting but the tylenol helped a lot.  Now I know why mine I always looked dark!  It's cuz it was purple... duh :)

  • Texas357
    Texas357 Member Posts: 1,552
    edited April 2009

    I was told to go to all lengths to prevent the nail from coming off. Otherwise, the new nail could be permanently deformed. That's why I keep the nails taped, and why I'm keeping them very short.

  • EleanorJ
    EleanorJ Member Posts: 752
    edited April 2009

    Elaine, there's no way I would have ask the BS to see the port!! Sounds like my removal, lots of twisting around. I got the stitches & strips as well. It's been 4 days and it's just now bruising, probably from all the twisting!. Aren't you glad it's out!

    Texas, sorry about the nail :(

  • Firni
    Firni Member Posts: 1,519
    edited April 2009

    I don't know if I have steri strips over the port stitches or not.  I have a piece of rolled up gauze and then the water-proof clear dressing.  I can take that off on Sunday.  Then I'll see what's going on under there.  My surgeon asked if I wanted to see mine.  It really was a lot smaller than it looked in me.  I thought it would be all bloody or something but it wasn't.  It was kind of pretty.  All purple and almost heart shaped.

    Texas, I didn't know the new nail might be deformed if the old nail came off.  Certainly incentive to keep the nails on.  The things we learn that we never wanted to know.

  • Grancy11
    Grancy11 Member Posts: 31
    edited April 2009

    hi all, glad everyone is hanging in there, Texas you seem to really have been hit by so many things, remember we're all thinking of and pulling for you...

    I'm 2 weeks out from my last chemo, still have 7 eyelashes and maybe 1/4 of each eyebrow, am pretty hopeless at drawing the eyebrows, fortunately I work from home and don't have to go out to an office every day!  haven't shaved my head in about 4 weeks and have a nice crop of peach fuzz, if it doesn't start really growing guess I'll shave again pretty soon, though have to say it doesn't hurt to lay on it thank goodness...

    congrats to all who are now portless, hope to join you in 2 or 3 weeks, see the onco next Monday and he will schedule me then with the surgeon...at first he wanted me to keep in it several months but that puppy is coming out as soon as I can!!!!!

    I'll sign up for the reunion, probably will have to be pushed, I'll be 78, but NOT OLD  :)

    yesterday and today we've had beautiful weather but ground is still soaked from Fri & Sat, hope good Spring weather comes to everyone pretty soon...

    take care, prayers and blessings to all...

  • swest
    swest Member Posts: 680
    edited April 2009

    Just wanted to pop in and say hello!  It is real busy at work today.  I'll try to catch up tomorrow!  Good evening ladies!

     Sonia

  • colleen1960
    colleen1960 Member Posts: 226
    edited April 2009

    Hello All - It has been a really bad day.  My mom was admitted to the hospital today.  She now has conjestive heart failure.  They are running more tests, but they are pretty sure that is what it is.  Hopefully they will be able to get her stable.  Please keep her in your thoughts and prayers.

    Thanks,

    Colleen 

  • Grancy11
    Grancy11 Member Posts: 31
    edited April 2009

    oh Colleen, lots of prayers for her and you too - God Bless

  • Texas357
    Texas357 Member Posts: 1,552
    edited April 2009

    Colleen, our prayers are with you and your mom.

    I see my oncologist today. Will ask him about the numb fingertips and burning muscles. I've got the energy to exercise (finally) but the pain is stopping me.

    Thanks for all of your support. I know it will get better, but it won't be as soon as I'd like it to be.

  • lisasayers
    lisasayers Member Posts: 850
    edited April 2009

    Colleen sending prayers to your family!  Hugs!

    Lisa

  • Firni
    Firni Member Posts: 1,519
    edited April 2009

    Hi every one,

    Colleen, my prayers are with you and your mom.  Let us know how she's doing.

    Texas, let me know what your onc says about your fingertips and burning muscles.  I'll go to my onc in a couple of weeks if the edema and numbness and pain aren't going away.  I see my primary today for my pre-surgery physical.   I'll ask him about this stuff too.  Then Thurs I see my PS for my pre-surg and my BS to get port stitches out.  Next week I have my exchange surgery and follow up appt with PS.  Too many Dr. appts in two weeks already.  I'm just afraid my onc is going to say, it's just the taxotere and it will eventually get better.  He hasn't seemed concerned so far.  But I need some relief.  I think if I can get the edema under control, the other stuff won't be as bad.  I think walking around like a stuffed sausage compounds the other stuff.  I did read yesterday that the median time for neuropathy to go away is 9 weeks and edema is 16 weeks.  Seems like forever.

    I'm getting excited about my exchange next week, but I'm really nervous too.  I always feel like this is the one thing I have some control over, but really I don't think so.  I'm so afraid I won't like the results.  It's kind of the last step in all of this and I want it to be right.  My PS is really good and a perfectionist, but I'm still nervous about it. 

  • swest
    swest Member Posts: 680
    edited April 2009

    Colleen - my thoughts and prayers are with you  and your mother. 

    Firni - Upcoming exchange.....Yipeeeee!!!!!  From what I understand it should be a breeze!  When next week is your surgery?   Monday I have my TEs placed. I'm beginning to get nervous.  I am excited that my mom is coming in to help me for two weeks.  I am so blessed to have her help.

    Best wishes to all of you wonderful ladies!  Have a great day!

  • Firni
    Firni Member Posts: 1,519
    edited April 2009

    Hey swest,

    I'm having my exchange on Wed. 4-29 at 8:30 am.  Good luck with the TE placement.  I never had any problems with mine.  Just go slow with the fills.  My PS put in 120cc when he put them in and then we just did 60 cc fills every other week till I was at the max over fill.  It really was a breeze. 

  • Lainey64
    Lainey64 Member Posts: 740
    edited April 2009

    Hi Divas.  Colleen, I'm so sorry about your mom.  My prayers will be with you both.

    Firni - My BS didn't mention having to come in to have my stitches removed. Hmmm... Maybe they are the dissolving kind.  My steri strips are starting to loosen up though.  They should be off in a couple of days I'm thinking.

    I had lots of numb fingertips during Taxol.  They are still slightly numb.  I ran my hands under ice cold water quite a bit and that help.  I am still taking about 500 mg of L-Glutamine each day.  My one toe is still somewhat numb as well but not as bad.  I definitely need a mani/pedi!

    Hope everyone has a good day.

    Lots of love, Elaine

  • Texas357
    Texas357 Member Posts: 1,552
    edited April 2009

    Oncologist basically said to give it time for all the side effects to go away. He said I'd had them worse than women who are on taxotere much longer, but he didn't seem concerned.

    We started the AI discussion, and I got so frustrated. He basically told me to ignore whatever I'd read about side effects because they might not happen to me, and I need the drugs. He also will insist that I take a bone strengthening drug too since I have osteopenia. My thinking is that he's awfully cavalier about the side effects (some of which may be permanent) considering it's not HIS body. 

    I'm not one to take prescription medicines and this is weighing heavily on me. I had started a natural regime to address the bone density issue (caused by a parathyroid tumor),  and I'm due for a bone density test. I'm hoping to stall him on at least that drug until I can get the results.

  • Firni
    Firni Member Posts: 1,519
    edited April 2009

     Texas, check out this relatively new thread. trying to figure out why I'm taking this  It discusses anti hormonal treatment and alternatives.  It's a nice civil thread where people are really discussing this issue.

    I saw my primary today for my pre-op physical.  He is reluctant to refer me to a therapist or prescribe anything without me going back to onc first.  He is going to test for Vit. D, folate and B12 and if I'm low in those he'll get me B12 shots and folate and D supplements to fight the neuropathy.  He also feels that all the swelling I have is not regular edema because there is no pitting and there would be as big as my hand and feet are.  He thinks it's lymphedema but again he's reluctant to go against the onc.    So I guess I'll go see Onc after my surgery next week and see what he can do for me.  I find that my onc can be very cavalier as well.  I wonder if a woman would be more sympathetic.

    Elaine, you must have dissolvable stitches if your surgeon didn't tell you to go back.  Of course if they're still there after 2 weeks you should maybe call them. 

  • Texas357
    Texas357 Member Posts: 1,552
    edited April 2009

    Getting my port out this morning under a local. Why wouldn't they let me eat or drink this morning???

    Firni, I'll check out the thread. Thanks!

  • Firni
    Firni Member Posts: 1,519
    edited April 2009

    Somebody wasn't thinking straight.  You can eat and drink with a local.  Good luck with the port removal.  It was a breeze with mine. 

  • EleanorJ
    EleanorJ Member Posts: 752
    edited April 2009

    Good luck with your port removal Texas. They didn't want me to eat or drink either, I assumed it was just in case they had to put me under for some reasons, but than nobody asked me when was the last time I ate or drink. Humm, maybe they did, can't remember, I did take a big Xanax befoer getting there ;)

  • Firni
    Firni Member Posts: 1,519
    edited April 2009

    Gee, maybe my surgeon was over confident with my port removal thinking he wouldn't have to put me under since I was told I could eat a light breakfast.  Yet he wouldn't do the procedure in his office.  Insisted it be at the hospital.  Even tho the hospital is directly across the street from his office.  

  • swest
    swest Member Posts: 680
    edited April 2009

    Thank you Firni for the encouraging words!  My PS is not expanding until 3 weeks after surgery.  How long did it take you to get back on your feet?  I just don't want to be down (at home) long.  I am not a good patient.  I am a better nurse. Wink  Good luck with your exchange on Wednesday!!!

    Texas - I hope your port removal went well!  Let us know how you are recovering when you feel up to it.

    Is anyone having trouble with hot flashes.  I get one every 1-2 hours.  All night it is covers "on" and "off".  It is really getting old fast.  Is there anything we can do?

    Sonia

  • Texas357
    Texas357 Member Posts: 1,552
    edited April 2009

    Back from the port removal. Surgeon closed the incision with glue so no bandages or stitches. Also no restrictions other than no bathing before tomorrow. I just took a Vicoden to knock the edge off the pain, but I think by tomorrow I'll be fine.

    Swest: My hot flashes have subsided on their own. Apparently the body does adjust after a while. But I understand that AIs can cause them again, so guess I'd better be ready with the fan!

  • Lainey64
    Lainey64 Member Posts: 740
    edited April 2009

    Texas, glad to hear the removal went fine.  My steri strips are just now starting to peel off at the edges.  Can't wait to have all this mess gone.

    Sonia, I wake up about once per night with a hot flash.  It's usually very early in the morning around 4:30 a.m.  I wake up, wonder why I woke up and then suddenly my head feels like it's on fire.  It passes very quickly and then I go back to sleep.  It's so irritating though!!  I'm not on any follow up drugs so I guess mine is due to chemopause. 

  • swest
    swest Member Posts: 680
    edited April 2009

    Elaine - Mine too.  Before chemo I would have a hot flash once a week(peri-menopause).  I don't think we can do much for them do you?  Who do I ask??  The onc. or gyno.?  How is rads going? 

    Texas - Glad to hear you are ok after your port removal.  Get some rest!!!

  • Firni
    Firni Member Posts: 1,519
    edited April 2009

    Sonia, I know I was down for a few weeks but I had my bi lat. mast. at the same time my expanders were put in.  I don't know what the down time would be having the expanders put in after the fact.  I'm thinking it would be an easier surgery since there won't be tissue removed and nerves cut.  As far as the fills, there wasn't any down time at all.  It took about 15 min. in the office and I was good to go.  Three weeks after surgery to start expanding sounds about right.  Don't want those incisions opening up.

    My primary doc put me on Welbutrin for my hot flashes a year or so ago.  It doesn't eliminate them, but they are less frequent and not as hot.  More like warm flashes.  Most anti depressants will do the same, just be sure to make sure what you're taking is compatible with your Tamox or AI.  Like I know Prozac doesn't go with Tamox.

  • LindaBusEd
    LindaBusEd Member Posts: 121
    edited April 2009

    My hot flashes are from Femara which I have been on for 3 weeks; some bone/joint pains but not bad enough (at least not yet) to take something.  Linda

  • swest
    swest Member Posts: 680
    edited April 2009

    Thank you for the information Firni and Linda!  I am not on Tamox, Femera or Al since I'm triple negative.  I will definitely ask my GP about welbutrin.   Right now I'd take my period back!!!  You girls are so wonderful!  What would I do with out you all! 

    Well my family is coming into town for my surgery so I will be scarce on the boards for a while.  I will try to check in with you all when I can.

    Sonia

  • colleen1960
    colleen1960 Member Posts: 226
    edited April 2009

    I want to thank you all for your good thoughts and prayers for my mother.  I went to see her yesterday and she is doing ok.  They are trying to drain the fluid with some drugs.  They do not want to have to aspirate them again.  She gets very weak just from walking from the bathroom.  The dr. said yesterday that she probably will not be out of hosp. until Friday.  But she has so many different drs. it is hard to say.  As for me I am feeling pretty well.  Disappointed that my mom will not be able to come and stay with me at this point.  Even if she is released from hosp. I live to far away for her to make the trip and be away from drs.  I see everyone here seems to be doing ok, getting ports out and going for exchange surgeries etc.  Isn't it amazing December Divas seems like yesterday we were all starting this journey and now a lot of us are at this point.   We have all come so far!!!!  Well thanks again for everything and I will check in again soon.

    Love,

    Colleen

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