still here
 

Hi everyone, I've been following your posts and thinking about all of you and just thought I'd give a little update. I had a scan 2 months ago and it was t-riff! Virtually no cancer activity anywhere, which I think I posted. My 3 week chemistries continue to look perfect i.e. as far as blood work goes my organs are functioning very well. I'm scheduled for scans at the end of march and continue to take 5 tykerb a day and about 4 xeloda every day one week on and one week off.

In some ways though I feel as though I'm falling apart. I had 2 different strains of influenza almost back to back and a minor cold. I've had a yeast infection (probably due to the Minocycline for the tykerb rash) and 3 periods in 2 months. The other thing is that while all my blood work has been good, my platelets have continued to drop. They are not at a dangerous level as of 3 weeks ago and I'm getting more blood work with my every 6 week zometa on Thursday. I have no symptoms of thrombocytapenia (sp?), but I'm concerned. My onc thinks that maybe it is just being on xeloda/tykerb since last May that has contributed to that. What do you guys think? The other concern is that it is a sign of liver disease, but she said that my blood tests (ALT, AST, Alk phos, bilirubin, albumin) would be reflecting that and they are not. Or, of course, there is always leukemia, but I have no other symptoms.

I also have been having right side rib pain which concerns me and I can't tell if it is muscular, skeletal or visceral. My sister said if it was the liver and was causing pain my blood work would not look so good and my scan was only 2 months ago and there was nothing to worry about. Also the external exam reveals no signs of distention in the liver.

My boyfriend, yes that is going very well:), said he talked to 3 people yesterday who have had the crud that is going around who complained of rib/side pain on the same side.

I'm hoping that the periods are frquent simply because I'm perimenopausal. I just have so many more variables than "normal" people so I'm always worried. I have a well woman visit tomorrow and am hoping to have an FSH either there or at the cancer center to check those levels.

And I'm always worried about the little bit of scarring in my liver from the cancer in the past. It is basically cirrhosis, but she says it is minimal.

If any of you have any advice/thoughts on the low platelets, frequent periods, rib pain, bloodwork, cirrhosis etc., I would value it tremendously.

Life is good and I want it to stay that way (duh). I have a boyfriend who loves me and treats me fabulously with whom I have a lot of fun. I have 2 beautiful children who are blossoming (and challenging of course). My oldest got into the jr high/high school of choice that we were hoping for for next year. I love working at the bakery everyday with my sister and the amazing people there (man we have a lot of fun). My friends are awesome and beginning new things in their lives that are exciting. My family continues to be wonderful and really fun. My house looks like Bagdhad which drives me crazy, but sometimes you just have to have a fort in your family room for a week.

I could really use some smart thoughts on some of these things and I know this is the best place for those.

In the mean time I pray for all of us and our loved ones and for the researchers and doctors working hard on our behalf. I was happy to see that the Herceptin DM1 trial is going so well for several of you and that there is a trial location in Denver. My doc's office is doing a trial of Iressa and Arimidex or Fulvestrant and Iressa-anyone know anything about that combination? I am also still curious about Bavarian Nordic's trial of the MVA-BN- Her2 vaccine that is in California and trials with Nexavar (sorafenib). I'm also alwyas thinking about the newer radiation techniques for the liver (RFA, Cyber knife, SIR spheres, etc.). Again any thoughts are welcome.

So in love with all of you and life in general,

Hey Joy
 

Thanks for the update
 

Thanks for the update Joy. You are one of the persons I have come to know and love thru this website. I celebrate your successes with you! Congrats on the new boyfriend. He sounds like a great guy.

Lisa

Joy,

You have been in my thoughts and it is good to hear from you. I wish I had some answers to your questions, but I don't. Just wanted to say keep up the good work.

Hopeful

Joy
It is truly a JOY to read your posts, you are always upbeat and positive....looking at the glass FULL instead of half full....it sounds like you are living true happiness, and you so deserve it. It is always great to read your posts.

Congratulations on all the wondeful things going on in your life. I am hoping with all of my heart that your life continues this way. By the way, how did you find that boyfriend?

Great news and great update Joy. I had the flu also, influenza A and was I sick. The cough finally subsided but it took 4 weeks. I was really laid up for 2 weeks. So much for this year's flu shot helping. This is the first year I have had the flu and I have been taking the flu shots since I started my career in dental hygiene 35 years ago. Retired for 5 years now. Keep up the good work Joy.

So glad to hear that things are going well for you and your family! One comment...I had very frequent periods for about 18 months before they quit altogether...and very heavy too...I had always been very regular, light, no muss no fuss...not for the last 18 months though!!! Sounds like that is what is going on for you!!!

Yea! for all the good, and fingers crossed that the not-so-good will resolve soon. Its good to hear from you. Keep in touch and keep on enJOYing life!

I was thinking how long we haven't heard from you Joy. It is nice to know that you are, not only doing okay, but fabulously well. Good for you!

Joy, great to hear from you and especially that you are suffering from the flu and other interesting things rather than,well, other more interesting things.

I think I might know somebody on the BN vaccine trial - I'll check if it is who I think it is and if you want I do have a phone number.

Not much help I'm afraid on the other stuff...

JOY...I don't really know info on the chemo questions but I just wanted to say hello and good to hear from you and YEA! on the boyfriend. I am happy for you! LUV is good for us:) I cannot believe that it is coming up on a year since the hilarious posts about the tykerb tigers and diarrhea divas...and I remember the posting about remodeling your bathroom into a library in prep and all the toilet jokes. lol!
Flori

Glad to hear from you.

I think your sis is right. I know someone with liver disease, Hep C, and other than test results, she feels no pain.

I had crime scene periods before chemo (periomenopausal) and often. It may be worthwhile to pursue Lupron to make them go away. Has it's drawbacks but.. radical periods get old.

Nice to hear from you, Bev

Joy, it was nice to see an update on how you are doing, I've missed your up beat posts. I'm so glad you have a special friend to share your life with. I'm sorry, I'm no help about the chemo. Just great to see your smiling pic on here!

Joy always a pleasure to hear from you. Congrat on the good scan results!! that's great. However sorry that you have some unexplained pain and therefore worries and aout the illness tho. But really I am so happy that you have a boyfriend this is great and glad your life is good, and the way I see it, it will be like that for a long long long time.

joy.. i have literature on tykerb.. i will try to do some reading tonight... if i recall .. it may have some thrombocytopenic problems.. the first time your scans dont come back perfect.. talk to your doctor about trastuzumab-dm1 trial.. all the girls here are kicking booty in that trial..

run to live..

Joy, it made my day to see your wonderful smile and hear of the JOY in your life! There will always be worries and concerns for us as you well know, but cherish the joyful moments. I pray they may increase and continue for you! I have found in my many years of fighting BC that we notice and stress over so many things, some worth our concern and some we should ignore. It is so hard, and we do need to be alert, but sometimes we just need to let go after we have done all we can. I have this quote framed on my office wall (and I try hard to heed it!):

Do not be overly concerned with what will happen tomorrow. The same loving Father who cares for you today will take care of you tomorrow and every day.
Either he will shield you from suffering or he will give you unfailing strength to bear it.
Be at peace then and put aside all anxious thoughts and imaginings.
Frances DeSalas
1567-1622

That said, I might add that I also agree with all the wonderful people on this board who often remind us to be our own health advocate, to stay on top of it all, and insist on our concerns and needs being met, not ignored.
Sometimes if you aren't making waves, you aren't kicking hard enough! Please let us hear from you more often. We care a lot about you, rejoice in your good news and empathise and pray about your concerns. Hugs, Tricia