HER2 Support Group Forums - words of thanks and a small update

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words of thanks and a small update

Thank you so much to everyone for your encouraging words and wonderful support. Thank you dixie for the suggestion regarding that drug, I will check into it. And Brenda I am sorry to hear that you have had some low points since the radiation. I so hope you are on the mend in every way.

This has been my first week off of treatment in the Gemzar/Carbo/Herceptin/Zometa combination. It is so interesting how you can be on treatment and question whether or not you are feeling all that bad and then you have a week off. I have felt like myself this week and I am loving it. I realize now that the weeks on are a bit tougher and that I am so hard on myself when I can't decide if it is treatment or me just being a slacker. I had also forgotten how much I dislike decadron. Even the 10mgs they give me on treatment days causes me to lose 2 nights sleep and makes me feel agitated. This, for an insomniac, is really stinky.

Compared to many other regimens so far this has been pretty good. The worst of it is a little hard to describe. I feel like my guts are made of lead. My whole torso, on the treatment weeks, feels heavy and weird. Some constipation (aren't you glad you know that) is probably contributing, but I don't think that is the only reason for 'lead gut'. The first couple of days my tongue and mouth are a bit sore and then that recedes-thank goodness. When I was on taxotere and xeloda I had such bad mouth sores and so much pain it took friends supporting me (like labor coaching) just to eat . And I am still gun shy about that. When that pain comes I get very anxious and those memories flood back. I also get a little burning in my hands, but very mild and it also goes away. There is some very mild transient nausea here and there too.

And, of course, there is thrombocytopenia. I could only have 75% of my 2nd Gemzar dose last week because of platelets. I so hope that by Tuesday they are normal. Although I have noticed more prominent bruising which concerns me as I am afraid they are not rising fast enough. You know how it is, you just want the full dose and you want it to kick the nasty cells HARD. I have no idea as of yet if things are better cancer-wise.

Otherwise, things are pretty good. Kids are great and beautiful. Their dad is a jerk, but that is not new, still heartbreaking though. Luca is wonderful as are his kids. We have this weekend to ourselves-very rare and I am so glad it is on this week off of treatment. I am dreading Tuesday a bit as I know I wont feel this good, but I can handle it, right?

I still feel very lucky in so many ways (most of the time). I have a roof over my head, nice food, great friends, the love of my life, an amazing family, healthy kids, good medical care and all of YOU!

Joy, glad to hear that things are going relatively well. My ex is a big jerk too, so I can relate to you there. Keep up the good fight and I know things will get better. It's always a great thing when you have someone who loves you by your side and family and friends to help. Makes the fight so much easier. Will keep you in my prayers. Enjoy your alone time. I know us mom's don't get that too often.

Joy, it is good to hear an update and I will keep
healing thoughts and prayers headed your way.
patb

Joy - you are a very bright star my dear. And you are shining very bright right now. Thank you for an amazing update!

Joy, it is good to hear from you.
Are you taking anything for the sleeping problem? I just used an OTC sleep aid such as Sominex (same as benedryl) and it worked pretty well for me.
Also, for the mouth...Biotene or Rembrandt (the one for canker sore sufferers) will help to prevent mouth irriatations.
Take care...
Maryanne

Joy, it's good to hear from you, and I hope that your body will "get used to" the new treatment soon. Hang in there, my dear.

Gemzar Joy low platelets etc.

Hi Joy and all,
I have had 2 Herceptin/Gemzar treatments and understand your challenges! After just one weekly treatment my liver enzymes, ast, alt, and alk all went up dramatically! Did your liver enzymes go up at all? My platelets went down to 87 after 2 treatments. I had to skip the third week. I may receive it every other week as it is very hard on my body, and I am a small person. I was told to use toothpaste for sensitive teeth while on this med; also with low platelets and lower white blood cells, it does not seem like a good time for dental work. I take Kytril for nausea and it works very well. (But for mild nausea some people probably can take Compazine.) Hope to hear from you. Lida

Joy, you never stop amazing me. As rough as things are at times for you, you always manage to find the silver lining in things, looking at the glass half full verses half empty. You continue to be a true inspiration to us all. Hope the next round isn't as tough on your body.

Joy,
thinking of you on this Tues! You just amaze me all the time. Keeping you in my prayers and you keep that beautiful smile going.

Jean

Hi Joy, It is always so good to hear from you and you are always here in my prayers. You have given me so much inspiration in the past 4 years, and like you, today I dreaded going in for Abraxane/Avastin. Now I am home in front of the fire and truly grateful for a roof over my head and the food my husband is cooking and my children and grandchildren and all of you here on this site. Thank you again, Joy, for sharing your stories and your life...We love you very much, Vickie

Joy,

Thanks for the update. You have a cute way of describing a lead tummy. Insomnia should be outlawed. The chemo takers need their sleep, doesn't the Department of Insomnia know that?

Want to bump this up to share with others. Thinking of good things for you and your family.

Hugs, Catherine

....did you feel that hug? Holding you close as you go forward. Keep that beautiful spirit of yours strong with continued courage!! Thinking about you as I sip...hehe>>Believe51

I did, I did feel that hug!

Thank you everyone for your lovely posts. I love the hugs and I love the "Department of Insomnia"! I will be sending them an e-mail.

I was able to get the full dose of Gemzar on Tuesday as my platelets were good (of course the Eeyore in me was afraid that the stuff isn't working). And I definitely feel better today than I did a week ago when I had carbo/gem/herc/zometa/deca/aloxi. So as with any new protocol, it is good to get the rhythm of things so we know how to plan and what is doing what, etc. I think I am figuring that out. Just that makes me feel better. I am still in the dark about the effect this is having on the nasties, but I am trying to feel good when I do and have fun in that time.

I am very saddened by Janet's passing. And fearful for Lily, but I have kept her in the forefront of my thoughts continuously. Feeling so much love and respect for her and her family.

Really for all of us too.

I am so glad I checked in tonight and saw your post. Above all I am just so tickled to see the smile that Luca still brings to your life - how wonderful that you met him when you did.
There is a new mouth wash that has come out for mouth sores - it is absolutely incredible and works like a charm. It is called "Caphosol"...ask your onc for a perscription - you have enough to deal with - and mouth sores shouldn't be among your issues. Truly, I had a mouth full of sores for a year - tried biotene and all the others - none worked with the magic that this did ...
Keep smiling angel..
Love Kim from CT