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TriciaK
11-19-2005, 07:31 PM
Hi everyone! I have been out of the loop for a couple of weeks and have really missed all of you and your comments and encouragements to one another. My husband and I have just moved from a large two-story house into a little smaller one-story house on November 7. I could no longer navigate the stairs, so we were only able to use half the house. We have 3 of our 9 kids living close by, and so had a lot of good help. I couldn't get my Internet, phone and TV connections turned on, though, until almost 2 weeks later. Very frustrating! It is good to be connected with the world again!
Another reason I haven't been in touch is that my last echocardiogrm on November 1 showed some more heart damage, so my cardiologist wants me to have another MUGA next Monday, Nov. 21. It is a little amusing (or annoying) because when I first told him my oncologist had me on herceptin the cardiologist said he had never heard of herceptin. I told him what I had learned here on this site about herceptin and heart problems because I had just had a heart attack a month or so before starting the herceptin. I gave him some printed info and suggested we do a MUGA, but he insisted an echo would be just as good. My oncologist finally ordered a MUGA himself on June 2, 11 months after the heart attack and about 10 months after I'd started the herceptin. THe MUGA showed 58, which is pretty good, especially in my situation. The cardiologist seemed a little put out that the oncologist ordered the MUGA because, he said, "we do MUGA's here in the heart hospital". Yet he again ordered the echo. A few days after the echo, the cardiologist's nurse called and told me the heart doctor was concerned because my echo was less than 30%, and he wanted to schedule a MUGA right away, which he did. My oncology nurse got a copy of the echo to show the oncologist the last time I went, and of course he strongly suggested we put the herceptin on hold for now.
I have very mixed emotions, of course: the concern about not having herceptin any more, fear of the heart worsening (I have known for some time something was wrong because I was very breathless and much weaker than I had been. I couldn't walk across the room without gasping for breath.)I am also very grateful to have had herceptin for 15 months past the heart attack and that my last PET showed NED. My oncologist assures me that they will monitor me carefully and can start the herceptin again when my heart improves.
So we will see what the MUGA shows. I am taking extra CQ10, fish oil, olive oil, and garlic and getting what exercise I can. And trying not to stress over all the inconvenience of moving again just before the holidays! I wasn't going to say anything to all of you until the results of the MUGA but I find I want to share this with you and get any input. So many of you have been through so much more than I, and I value your encouragement and suggestions. Do you think a stage IV, her2+++, estrogen/progesterin+, third-timer can stay NED without herceptin? My oncologist has already suggested a brain scan and another PET in a couple of months. I will see him every three weeks and stay on zometa. Any other suggestions? Thank you all so much for "listening" and all kind thoughts! Hugs, Tricia

sassy
11-19-2005, 07:39 PM
Good to hear from you. I am sorry that you are having some difficulty, but your spirit still shines thru. I can't offer you advice, but I do offer my encouragement and prayers. Keep the Faith!

Sassy
________
LIVE SEX WEBSHOWS (http://livesexwebshows.com/)

Barbara H.
11-19-2005, 07:51 PM
Hi Tricia,
It is great to have you back and posting to the site again. You are such an inspiration. I'm sure that you will get your heart in condition again, but is sounds as if you may need a cardiologist who is willing to work together with your oncologist. My mother-in-law had heart failure three years ago, and she is now in better shape than she has been in years and just had her second knee replacement. She will be 81 in January. With the right treatment I think there is a lot of hope to get your heart back in shape to begin Herceptin again. If you look at Gina's posts, you will see from her experience that it doesn't necessarily hurt to take a break.

You are such an inspiration and I love to read your posts. I myself, have experienced a setback. It appears that I have a recurrance in my frontal lobe at the same location where I brain surgery a year and a half ago. I will see a surgeon next week to decide the next step. You can see my post below.

I'm sure you will make it through this. My thoughts are with you, and best wishes for an enjoyable Thanksgiving with your family.

Barbara H.

mamacze
11-19-2005, 09:09 PM
Dear Sweet Angel,
Welcome back ! It sounds like you have had quite a hectic time of it this last month moving, and now that you've just sat down, the old snake of doubt is weaving its way through your mind with worries about another reoccurance. Oh how I hate having those doubts, yet they come, like it or not. It is understandable, with the heart damage now and letting go of the security blanket of Herceptin, doubts are inevitable. You are such a kind and loving soul; always thinking outwards; sharing your kind thoughts and love. If any one who is a Stage IV third timer can make it for a long go of it with No Evidence of Disease, than you are it.
You are over due for a turn at sharing worries...let them all hang out and we will blow them away for you...
Love, Kim from CT

RhondaH
11-20-2005, 05:24 AM
and will keep you in my prayers.

Rhonda Hoffman

kristen
11-20-2005, 07:00 AM
Dear Tricia,

It is so good to see you back on the boards. I love seeing your picture and that smile. I am sorry you are having this set back, but maybe not.... Maybe it is just time for a little break for you. It sounds as if you have two doctors who are very territorial over you and only want the best. I feel confident that your onc. will be keeping a very close eye on you and your cardiologist will be reading up on Herceptin.
It sounds as it has been a very stressful month, with moving, doctor apts. and the differences of opinions. I think like the other ladies that have posted above me that you will be fine. As for any other suggestions, your taking excellent care of yourself and staying on Zometa and I think your onc, if you needed to be on anything else would not hesitate to do so. I will keep you in my thoughts and prayers for I think you are an amazing woman who has reached out and touched so many of us. Please keep us posted and know we are all pulling for you. Love to you Tricia.

pattyz
11-20-2005, 07:47 AM
{{{Tricia}}}

When I recurred 3 1/2 yrs ago, I did two months only of Herceptin/Navelbine to get me to NED of body. Have stayed there without any treatments to date. This has not included my brain mets recurrances, ofcourse.

I was nervous! a bit with my decision, but after time have become happy with my QOL outside the scope of dealing with my brain mets.

You deserve a break, a rest, a time for healing...in my opinion!!!

hugs,
pattyxoxox

Unregistered
11-20-2005, 12:16 PM
Dear Tricia-
My onc has a patient whose heart was so bad that she was on a waiting list for a new heart. In the meantime she joined a fitness club where she goes everyday and they worked on heart exercises with her. She loves going. Well, she waited and waited and there was no heart to be found for her. Well- guess what? Her heart has now repaired probably from all her exercising and not being on chemo for awhile! She now is off the list for a new heart and exercising at her club everyday. She's back on some kind of chemo too.
You have the best attitude I know and also strong faith- which is everything. You are in the palm of God's Hand and I know that you know that. Stay positive and keep praying and I'll pray for you too! God Bless- Cathy (Joe said my new name is Cathy1

StephN
11-20-2005, 12:32 PM
Dear Tricia -
I was about to post an "all points bulletin" looking for you. Not recalling any posts about a move, I got a little worried!

You know that stress can have some deleterious effects on all of us. Well, I consider a major move to be full of stressors. My parents built a new home all on one level 4 years ago and I helped them pack and move (48 years of living in the same home!) and have a garage sale. This took FIVE trips across the state to accomplish and we still take care of little bits and pieces each trip over. I was ALSO pretty stressed out as was newly off chemo for rampant mets and was giving a lot of my energy to my parents' situation.

Fortunately they are very happy and active and do just great in their new home.

I would be willing to bet that this latest heart situation with your heart coincides with a LOT of stress. Do what you can to find some time for the inner work that is so important in finding and keeping your equilibrium. If you need a couple of months off Herceptin, that should be OK. But I would be firm that this is not a permanent situation.

Happy Holidays to you and all of "yours."

jmlucas
11-20-2005, 12:35 PM
Oh Tricia!
Just want to send you lots of love & good vibes & positive energy. You've offered so much to so many of us here, including me! I don't have much to add, except I had the same experience w/a cardiologist & I was SO FRUSTRATED! After I educated him about what herceptin is & the potential cardio-toxicity, I could barely bring myself to write a check for my co-pay for his "services". It's so absurd isn't it?
Hang in there! Let your family spoil you through the holidays!
Keep the Faith!
Jessica

Rozebud
11-20-2005, 02:11 PM
I don't have anything to add, just wanted to say welcome back!!

Kim in CA
11-20-2005, 04:51 PM
Dear Tricia,


We've missed you! Moving is one of the hardest things to do, very draining. I'll bet taking a little breather from Herceptin and just getting back to doing the normal things that you usually do will have a very healing effect for you. Sounds like you already do all the right stuff and you just need to get back into your groove! I'm sending positive thoughts and prayers your way too.

Love, Kim in CA