After herceptin

Hi all,

Living in Maine now and enjoying it a lot--leaves are starting to turn and weather is lovely. The natives say September is the best month in the year.

It's about six-seven weeks since my last, and final, herceptin, and for any of you who, like me, are having problems while on herceptin (mine were swollen feet and very swollen ankles (the ankle bone had completely disappeared), difficulty breathing and getting tired very easily, etc., there is good news. My ankles are normal once again, even late in the evening. One cardiologist I visited about these problems insisted that I just had fat ankles (not my favorite doctor) but he was wrong. I still get tired and out of breath, but nothing like before, and I'm doing lots of physical work--painting and cleaning, and cleaning and painting all day, every day, and feeling really good. Today I painted the back porch. It's difficult to believe when you're feeling lousy that it will ever get better, but it does. And, finally, my last HER2 serum result was half of what it was when I began. So if you're getting at all discouraged, remember it does get better, or in my case, much better.

[StephN]

Thanks for letting us know that life in Maine is agreeing with you.

Such great news that your side effects (and we all knew that's what is was, right?) are nearly disappeared. The fatigue is also a byproduct of the other treatments, which do take some time to stop being so bothersome. After 5 plus years off chemos, I still don't have the same old pep I once had. Guess age has a bit to do with it, as well as having to stay on Herceptin which is doing its job for me.

Don't overdo yourself with the spruce up job on the house. But it IS so rewarding to see progress and how nice things look when cleaned and painted. My grandma used to say "then you don't feel like you are living in other people's old dirt" ... And you have an expert painter in your hubby! Love to know what colors you are working with.

[Mary Anne in TX]

What a joy to read your post and know that you are well, happy, and able to transform your new house into your very own dream world cause you feel good enough to do it! Encouraging....of course. Thanks for taking time to let us know that your new life is blooming already! ma

[tousled1]

Grace,

With your new house you'll be quite busy for the next few months. I'm glad to hear that you're feeling so much better and that you're almost back to normal. It must be great not to be at the infusion center every three weeks. Enjoy your new home.

[tricia keegan]

Hi Grace,
Glad to hear you're enjoying your new home and feeling well again, sometimes in the middle of treatments it's hard to believe we'll ever feel somewhat "normal".
I am doing well too and almost a year finished herceptin now although I still sometimes feel like 90 from the Arimidex! My best wishes to you and your family in your new home.

[Emelie]

So glad to hear that I wasn't the only one with issues. I had my last treatment 5 weeks ago, I stopped at 8 months due to chronic joint and foot pain, and I too am feeling better. I still tire more easily and I still have terrible pain in the bottom of my feet when I first stand up, but it is getting better.
I see in your post that you go to or live in Italy. We are leaving for Italy on Oct.7 thru the 24th. Hubby has business and he is taking me. Any suggestions about Florence?
I hope your recovery continues to go smoothly and try not to do too much.
Best of luck,
Emelie

[Margerie]

Grace, I have East Coast envy in Sept/Oct. We are still the same old weather here in California. Glad your "fat ankles" have made a miraculous recovery.

Hope you have fun in Italy Emelie and that your feet settle down so you can enjoy some fabulous strolls.

I have 4 more herceptin infusions, but who is counting? LOL I am hoping that my insomnia goes away when this treatment ends. It started right when my herceptin started. But this was right when I also went into chemopause, and later I started Arimidex. I guess we will find out in a few months. Knock on wood that my PET comes up clean in Nov.

Emelie,

We lived in Florence for some months a few years ago, and it is wonderful. I guess the only place that is an absolute must is the Uffici, but I'm sure you're already planning to visit. One tip, you can order your tickets online or by telephone, and it's a good idea as no matter when you visit there are long lines to get in. So, try to get your tickets ahead of time. You'll still have to wait but not as long.

Try to visit Assisi while you're in Italy. It's a magical city (and about an hour by train from Florence), much smaller than Florence so easy to visit all the sites. The Cathedral has wonderful medieval works of art, some of the best in the world and well worth the visit. And if you visit the main square, have a beer or wine at the Bar Sensi, and if Orlando is there (the manager, say hello for me). Have a great trip.

[SusieQ]

Thank you for sharing! How exciting! Best wishes to you and your family.

I too have swollen ankles and fatigue. I received a Herceptin IV yesterday, and I once again, registered this concern with my Infusion Nurse. You give me hope!

[Jean]

Hi Grace,
I was just thinking of you a few days ago. The very best of luck and happiness in your new home. Glad you are feeling better and those
legs are cooperating with you.

FYI - I took your wonderful book down to the shore and thought I would get some reading in..well the ocean called out to me way to often and the long walks on the beach also. But I am now nearing the end and enjoying
the story very much. Love the Italian background - feel as if I am there.

Hugs,
Jean

[hutchibk]

HI Grace - been wondering how you are! How's the writing? Great to hear from you and that you are doing good...

Thanks all,

Jean--How kind of you to have purchased my book. I'm glad you liked it and also glad you enjoyed the ocean.

Brenda--My second book, A Deadly Paradise, is with the publisher, to be published in May 2008. I'm working on third in between painting porches.

SusieQ--It's rather surprising how quickly I've mended since coming off herceptin. I'm glad I did it for a year, particularly since the side effects seem to be temporary, and my tumor markers came down quite a bit--I attribute that to the herceptin. I'm sure that your side effects will resolve when you get off herceptin.

And thanks everyone else--Stephanie, Kate, Tricia, Margerie, Emelie, Mary Anne.

[BonnieR]

Grace, it is good to hear you sounding so well and happy. Thanks for staying in touch.
Enjoy every minute of that beautiful autumn weather!