anyone starting chemo in Nov 2005

Options
1…2627293132…123

Comments

  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited March 2006
    Nancy, sorry to hear you have to deal with the Neuropathy.

    ((((HUGS))))
    · Share on FacebookShare on Twitter
  • Odalys
    Odalys Member Posts: 2,103
    edited March 2006
    Good morning ladies.

    Thank you for all your prayers and well wishes. I still have not been able to get in for that ultrasound and trying to get the RADS doctor to fax over an order to my current healthcare facility has been like pulling teeth. Maybe this is a sign that I should stay put. Perhaps, God wants me to struggle through this so I can really appreciate the excellent care I've received at the current facility.



    For the past few days, DH and I have been brainstorming to see how we can deal with the commute so I don't have to change facilities. The stress we go through on this journey! I'll keep you posted.



    NancyK - I hope you find relief soon.



    Got to go...I'm at work. I'll talk with you later.
    · Share on FacebookShare on Twitter
  • kim825
    kim825 Member Posts: 284
    edited March 2006
    Nancy, I read about the Elta cream and other cream on the Xeloda Girls thread under the Help me through Treatment Thread. Hand/Foot Syndrome is a big side effect from the Xeloda. Maybe take a look at that thread. My onc. said there is no way to prevent it from happening, but the cream may help control it. I have been using it at night from the first day of Xeloda. It is a little greasy. I bought it at CVS.
    Odalys, push for that ultraound. If you are unsure about your treatment or facility, maybe get a second opinion. I commute 1 hour to and from facility. It is a long day, but I am so satisfied with my center that I wouldn't change to the one 5 minutes from my house. You are right, the stress we go through. Hang in there.

    Kim
    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2006
    Hi everyone, just wanted to add that I am sending you all gentle hugs and prayers. I hope that we all have a much better couple of days.

    Love and prayers, Debbie
    · Share on FacebookShare on Twitter
  • Odalys
    Odalys Member Posts: 2,103
    edited March 2006
    Below is information I posted on the Help me get through Treatment Thread just in case you all did not see it. Hope you find this web site and information useful. Talk with you later.


    Lately it’s become apparent to me how difficult it can be to transfer medical information from one healthcare provider to another, especially if they are not in the same healthcare network. This got me thinking, how many of you are struggling or have struggled with this very issue?

    I want to share with you a Web site that is provided as a free public service by the American Health Information Management Association (AHIMA) called my Personal Health Record (myPHR). On this web site http://www.myphr.org/ you will find detail explanations about your personal health information rights, a step-by-step guide on creating your own personal health record, and sample forms that you can download and begin using (free of charge).
    · Share on FacebookShare on Twitter
  • Odalys
    Odalys Member Posts: 2,103
    edited March 2006

    Thanks, Kim. I think I'm going to stay where I'm at. I agree with you, we need to feel comfortable/confident in the care we are receiving. I'm getting the ultrasound done tomorrow and just came back from picking up my mammo films and interpretation. Will keep you all posted.

    · Share on FacebookShare on Twitter
  • kim825
    kim825 Member Posts: 284
    edited March 2006
    We will all be thinking of you tomorrow and right there with you holding your hand.

    lots and lots of hugs,
    Kim
    · Share on FacebookShare on Twitter
  • Odalys
    Odalys Member Posts: 2,103
    edited March 2006
    Kim, great to know you are all there in spirit and prayer. This means a lot to me as I will be going by myself to the ultrasound appointment. I know I'll be by myself but not alone. I feel so blessed to have found this group of courageous, kind, and loving women. God bless you all.



    Lots and lots of hugs to you too.
    · Share on FacebookShare on Twitter
  • Margerie
    Margerie Member Posts: 526
    edited March 2006
    Odalys,

    Hoping you have an uneventful u/s. And maybe you can throw in some fun shopping or trip to a good bakery while you are out there!

    I just found out I have calcifications in my thyroid, rad onc saw on my CT for rads simulation. Just know told me. I need an u/s to rule out a problem. Was assured it "is probably nothing". Why is this never reassuring?

    But the good news is I have 2 more rads and 1 more week of taxol to go. Yeah!
    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2006
    Margerie and Odalys, CANCER SUCKS! Just know that while each of you are going through this little extra "treat," we are all going through it with you. Please, both of you, let us know what happens.

    Mmm....a bakery trip! Sounds fun!

    I found out that my "digestive" issue (posted a different thread about it...SO embarrassed!) is NOT an infection. Thank heavens! Now, I just wonder why it isn't ending?!?!

    Thinking of you all....
    Love and prayers, Debbie
    · Share on FacebookShare on Twitter
  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited March 2006
    Margeria, and Odalys You will never be alone as long as we are here. That goes for all my sisters on this board. I care about each and everyone of you.

    Debbie, I know you want to move on, and you will. We will all be there for you , and be by your side for as long as it takes.

    I had my temp markers done today, and the CT. Will have tattoos and first treatment on the 10th of April. I hope I sail through rads.

    Next Onc appointment is the 6th. They said if I need to be lined up better they will do it then.

    I hated being exposed with my arms above my head, Grrrrrr. It would be fine if is was only a woman, but there were men too.

    Why didn't someone say how they do it......I need details ladies. LMAO

    I need to get off here and get some rest, blessings to you all.

    ML

    Special Kaye I have been thinking of you. Hope all is good and you are enjoying spring.
    · Share on FacebookShare on Twitter
  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited March 2006
    Kim, my prayers are with you. I hope the Neuropathy will go aways soon. I still have a lot. Can't walk very well. And the pain in my leg and hip really drive me nuts at night. I will be so glad to throw aways the drugs. I'm sick of it.

    How is the hair growth for everyone? My fuzz is going wild. It is very thick, so that is what I had before. When does it start to curl? Mine isn't long at all, just now starting to show.

    And it is snow white with sporadic dark hair.
    · Share on FacebookShare on Twitter
  • kim825
    kim825 Member Posts: 284
    edited March 2006
    Margerie, when is your U/S? Make sure you keep us updated when it is. It never is reassuring until we know for sure it is nothing.
    MaryLou on this Xeloda my hair is supposed to come back. It is not a drug that your hair falls out from. I have a lot of long white fuzzies. Like my 3 year old daughter said, mom your hair is highter. LOL!!! I just hope that is they ever have to change chemo drugs again, my hair will fall out again.

    Kim
    · Share on FacebookShare on Twitter
  • spirit3kd
    spirit3kd Member Posts: 37
    edited March 2006
    I haven't posted in so long, I couldn't even find the end of this thread.

    Your messages do come through in my email, so I do get to read what is going on with all of you.

    So sorry to hear that some of you are not doing that good? I would have thought after all those treatments your problems would be over?

    I am not without my problems....still alive and thankful for that, as they didn't think I would make it even 30 days without the whole brain rads. I am getting some pretty severe headaches, but I think it is due to a bad tooth, may have abscessed and went up into the brain, not sure. But got the tooth pulled and taking some penicillin now so will see if that is it or not. Just hope the brain tumors aren't growing. I have so much to do yet. Still haven't done my traveling, there is always something that comes up to fix before I leave.

    I have hair coming back, very short, but it is getting thicker. I can't believe I lost it all in one treatment and it took about three months before any fuzz started to show.

    Well take care everyone, I just wanted to wish you all Wellness, and a good road ahead of you to look forward to.

    Love, Kaye
    · Share on FacebookShare on Twitter
  • Odalys
    Odalys Member Posts: 2,103
    edited March 2006
    Had the u/s done today and read by two doctors...it is NEGATIVE!!!! Yeah, as Margerie said it was much to do about nothing, thank God! Thank you all for helping me get through this. I also met with the RADS team who will continue my care. They are great, I'm not changing. Well, I'm exhausted now and can't write much tonight but I will read all the post and will respond. Good night ladies. I love you all. Many hugs...
    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2006
    YES!!!!!!!!!!!! That is WONDERFUL news, Odalys!!!! I am so happy for you.

    Kaye, we are so glad to hear from you! It sounds like you are doing well enough (under the lousy circumstances of cancer!). We all love you! I wish you tons and tons of safe travel and lots of happiness in the MANY days ahead.

    Mary Lou-forgive me for being lazy and not responding to your email directly! I promise I will respond, but tonight I am going to take my meds early and go to bed. I have to get some wacko diarrhea shot tomorrow?!? I'm so not excited, but my doc. says it will help my issues right away.

    Ok, I am going to bed. Hang in there, everyone.
    Love and prayers, Debbie
    · Share on FacebookShare on Twitter
  • Margerie
    Margerie Member Posts: 526
    edited March 2006
    My thyroid u/s is April 11th. I did not want to do until I am done with chemo.

    Good night my fuzzy-headed friends. Sweet dreams!
    · Share on FacebookShare on Twitter
  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited March 2006

    Odayls - Great news!!!!! Glad all is well. Prayers really do work

    Debbie - Don't worry about the email, just take your time. I understand. I have to do the same thing at times.

    Special Kaye, wonderful to see you here. I sent you a PM. Prayers to you all.

    ML

    Kim - LOL at the fuzzie friends.:)
    · Share on FacebookShare on Twitter
  • kim825
    kim825 Member Posts: 284
    edited March 2006
    Oh Odalys, I am crying tears of joy. Thank God. You are right MaryLou, prayers do work. (even when we are mad as hell at the big man for this happening). Margerie is the one who called us her fuzzy headed friends. I like the name too.
    Good to hear from you Kaye.

    Kim
    · Share on FacebookShare on Twitter
  • AnnaM
    AnnaM Member Posts: 1,387
    edited March 2006
    Too tired to write. Just want to say I am thankful to have heard from Kaye and Odalys. God does answer our prayers, Odalys. I am still praying for you, Kaye, and I won't stop.

    Anna
    · Share on FacebookShare on Twitter
  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited March 2006
    LOL, I have such a short memory now. Maybe fuzzy brain is what I have~~~~~~~~~
    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2006
    Hee Hee hee....I love both the terms "fuzzy head," and "fuzzy brain!"
    Love and prayers, Debbie
    · Share on FacebookShare on Twitter
  • Odalys
    Odalys Member Posts: 2,103
    edited April 2006
    Hi fuzzy headed friends, catchy term, love it. Thanks for sharing in the excitement of my good news. Like Anna, I'm too tired to write and still exhausted from the emotional roller coaster but I'm thinking of you and hope everyone is having a good weekend. Love and many hugs........
    · Share on FacebookShare on Twitter
  • Nancy-SanDiego
    Nancy-SanDiego Member Posts: 127
    edited April 2006
    What wonderful news from Odayls and Kaye, you have been missed. Hope you will be on the road soon--minus the headaches.

    "Fuzzy headed friends" sounds great, as does "your hair is higher." I haven't joined you yet, but will as soon as I start rads.

    Mary Lou, tell me more about this rad prep process. I am right behind you. Anything I can/should do? Do they actually tatoo you or just mark you? Can you opt for a daisy?

    Three more taxol. Spent another day in the hospital yesterday with 102. Undefined infection, back on broad spectrum antibiotics. Think my body is just worn out or maybe that is just my mind.

    Leave for SF tomorrow for 3 days. Was hoping the city would be dry, but not yet.

    All of you have a wonderful week--we're moving through this.

    Nancy
    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2006
    heehee!!!! You are all making me laugh today....Nancy-opt for a daisy tatoo?!?!?!? Cracking me up!
    Love and prayers, Debbie
    · Share on FacebookShare on Twitter
  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited April 2006
    LOL, no it can't be a daisy. First you have a ct to get the rads lined up. Then they put the markers on. It is tape with little silver balls, like a BB , only smaller.

    Once the Onc looks at it, then they put the permanent tattoos on. They are just a dot.

    I just hate being naked while doing this. Your whole top is exposed.

    Cancer sucks
    · Share on FacebookShare on Twitter
  • Odalys
    Odalys Member Posts: 2,103
    edited April 2006
    Kaye - glad to hear from you, hope the headaches go away soon so you can head out on your trip.



    Anna - hope you can get some rest, feel better soon.



    MaryLou and Nancy - I also had the RADS simulation session this week. They used a sharpie marker to mark the area. The experience was better than I thought. I had to lie there with left breast exposed and arms above the head. There were 2 men and 2 women but they were such professionals, so loving and respectful of my privacy I did not feel exposed at all. Actually, I almost fell asleep while they were taking the scans! I need to go back next week to have the tattoos. I was given a choice of tattoos or area marked with permanent marker. I prefer the tattoos because the marker comes off in the shower and I don't want to worry about that or having to go back for another mapping session. Sorry ladies, no daisy or butterflies available only tiny needle marks the size of small freckles. The tech told me most patients who have RADS after chemo tell her it is a breeze. I sure hope so. From her lips to God’s ears!



    Rad Onc recommended 5 weeks at 180 and 1 boost for a total of 30 treatments. I am eager to get started with RADS. I’ll continue to work throughout the treatments and have already adjusted my schedule to accommodate the 2 hour commute (1 hour each way). First treatment is scheduled on 4/10. MaryLou - we will continue the journey together. Anyone else starting RADS soon?



    How many more chemo treatments do you all have left?



    BTW- My fuzzy hair is falling out. I hope the new hair comes out soon. I'm tired of the wig.



    Take care ladies, hope everyone receiving chemo this week has an uneventful experience with little to no side effects.



    Love and Hugs…..
    · Share on FacebookShare on Twitter
  • AnnaM
    AnnaM Member Posts: 1,387
    edited April 2006
    Nancy, sorry to hear you keep having these high temps! I hope they find what's going on.

    I go in tomorrow for Taxol/Herceptin #11 of 12. Getting a nice deep breath is still hard, but we're walking up to 3 miles a day now that the weather is so nice. I'm so emotional these days. Things are scary now that I am looking at moving on from my routine, chemo on Monday, hyper Monday and Tuesday, depressed Wednesday and Thursday, fine through the weekend but nervous on Sunday as if facing the first time again. I just hope breathing gets easier soon. Could it be because I am such a fatty? It's not that I have gained an awful lot, it's just I'm heavier now than I have ever been, at least fifteen pounds more than before the surgery in September. Maybe that's what's making the breathing so difficult. I hope I get my old self back at some point.

    Good luck to all who are going in for treatment this week!

    Anna
    · Share on FacebookShare on Twitter
  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited April 2006
    Just a drive by to send love to all

    I have had guest all week end , and all though we all had a wonderful time, I'm very tired.

    A nap sounds good right now
    · Share on FacebookShare on Twitter
  • LAT56
    LAT56 Member Posts: 79
    edited April 2006
    There is so much to catch up on!!
    Odayls - Glad to hear your great u/s news!!
    Kaye - Take care & I hope that you can start your travels soon.
    Nancy - Hope that the antibiotics kick that temp. & infection right out of you.
    Anna - You're walking 3 miles a day!! Good for you!! It's been too cold or snowy to do much outdoor walking here.
    Mary Lou - I know what you mean by "fuzzy brain". I've been having trouble with my short term memory. There are complete days that I can't remember. And I definitely have the fuzzy head look!!
    I'm 3 weeks out from my last chemo treatment & I'm still experiencing pain on my left side - along the surgery site, shoulder, etc... I'm not scheduled to see the dr. until June!! I have to have some blood work done next week. I had a brain scan, MRI, & bone scan done in the past 8 weeks and all were negative. But shouldn't I have a PET scan done? Am I being paranoid?
    Hugs & prayers to all.
    Hope everyone has a GREAT week!
    LAT56
    · Share on FacebookShare on Twitter

Categories