yet another update

[Joy]

Hi everyone, just wanted to share my treatment plan with this dumb progression in the liver. In the last 36 hours I have seen 3 doctors including a trip to Denver to see my specialist and a local interventional radiologist and my regular oncologist.

The radiologist informed me that he saw more than the two spots on the PET, although I read the report after that and it said there were those other spots, but only 2 of them had increased glucose uptake (and by increased I mean double and triple). He felt that he could not get to everything as effectively as he would like. And we are hesitant to do SIR spheres because of the old cirrhosis from past cancer. So he phoned my onc and they agreed that was not the right course. I went to Denver after that and saw the specialist. Before he even came in the room I could hear them talking about the herceptin dm-1 trial and enrolling me as he is now offering it as his office. So we began our visit with a little history review and then we discussed the study which he is so excited about. Somehow in the conversation it came up that I was still having periods and frequently, which I think he assumed I was menopausal. His whole conversation shifted and he said that the estrogen may be the problem and then if he were treating me he would request an oopherectomy and faslodex with regular herceptin as the two work together so well. He reminded me that it is still very little of my liver involved and my LFTS's are normal-yes, thank you, God! So we could try this asap. He said if it works faslodex often works twice as long as AI's which I had a great run with for almost 2 years in the past. If it doesn't work then I enroll in the study and so far it looks like I would qualify and he gave me consent forms.

I met with my regular onc today and both docs had phoned her to tell them about the visits and she was very supportive of the oopherectomy/faslodex/herceptin route providing we continue to watch the liver function VERY closely so as not to miss anything and lose any windows of opportunity. She is excited about the trial and that the specialist is doing it. So I'm waiting on a call from the OB/GYN's to schedule the procedure and I begin faslodex loading dose, herceptin loading dose with my zometa on thursday. And I have stopped taking Tykerb/xeloda. I should have the oopher done within the next week or so and she said that would be fine. We are scheduling another echo as the last one was in December.

I am really, really hoping this works, duh! It does seem that every time my body goes premenopausal things get jiggy again. And as the specialist said as far as we know you still have a hormone dependant cancer so let's really get rid of the hormones.

Any thoughts or experiences out there? you guys are the very best source of information EVER!!!!

I feel like a squirrel in a dishwasher after the last couple weeks. I've decided to not get married and may even be breaking off this relationship as I am scrutinizing it more and I'm okay with that. My blood pressure, which is normally low, was 140/100 at the specialists yesterday and I told my friend that sums up everything about the last 3 weeks. I felt that I needed to look at that and I know the pressure from the relationship has been and equal factor in the stress. Any thoughts on that are very welcome as well.

i'm sure there is more, but the kids have gotten very quiet, I'm thinking I need to check.

Love to you all!!!!

[Mary Anne in TX]

Wow, Joy! Lots of input from your doctors. Sounds like you're getting such great care. I'm praying it all works to keep things simple and good for you. ma

[Barbara H.]

Hi Joy,
I think you will love this trial. You won't lose your hair, and it is very tolerable. Everyone that is on it at the Dana Farber in Boston is doing well. At least that is what my oncologist said the last time I asked about it. I really feel for most HER2 mets patients it is the best weapon and most tolerated weapon we have right now. I don't have hand and foot issues, or GI issues, hair issues, or all the side effects I hear from the other drugs. I am in the stage I trial and am therefore receiving a higher dose than the stage II trials. In spite of this, I am able to live my life and work full time. My first infusion was long, and I did have chills and side effects from that one, but I still went on with my life. The part of the trial that I don't like is that it is weekly, and I have to have so many scans. I don't believe in them because my tumor markers are accurate for me, and I used to only get scans when they started to increase.

I hope that you get into this trial and that it works for you. I'm sure you will have many more problems going into menopause.

As far as your relationship goes, I can not really give you advice. You need to talk it over with your friend, and maybe not think of marriage yet until all this treatment has settled. My thinking is to at least keep the companionship, but I don't really know the real state of the relationship. Nevertheless, considering what you are going through could but a strain on any new relationship. In addition, your elevated blood pressure could just be from all this stress. I am always treated right after school at the end of the day. When I arrive at the Dana Farber my pressure is higher than I like it. By the time I leave, it is usually quite low.

Best wishes and keep us updated.

Barbara H.

[Cannon]

Wow, Joy, you've got all the doctors and angels lined up on your side. Go get em!

I had a double oopherectomy at the same time as my double mast, and remember it as a piece of cake (so I must have been on some good drugs). It really is a minor procedure. Good luck and God bless.

[chrisy]

Joy, it is so wonderful to hear your update. I've been waiting! Nice to see you were able to keep it brief, given that you've been seen by half the specialists in Colorado oh and there's that relationship thing too! Oh, and quite kids...

Squirrel in a dishwasher is a good visual for what you've been through!

Interesting about the ah-ha moment on the estrogen. So I guess if you have the OO, no more bouncing back and forth and you will finally get to...pause.

My only thought is, get them the assess it quickly (response) so that you still could "get a spot" in the T-DM1 trial. I've heard it is filling up fast and you don't want to miss out on that opportunity should it be necessary. I'm on the Phase II (every 3 weeks) and have had some liver toxicity issues - but maybe that's because that is where the disease is and it's pissed off.

As for matters of the heart, as I responded on your other thread, you need to TRUST your heart. Even (or especially) if it saying not this person, or maybe just not right now.

Put yourself first and put all your focus on pushing through this latest poop.

[Barbara H.]

The liver enzymes will rise with the MCC-DM1 trial. That is the most common side effect of the drug. My enzymes were normal when I started the trial. Now, I occasionally have to skip treatment because of elevated liver enzymes. When I skip a treatment they drop. Nevertheless, this drug is doing its job. I had pretty substantial bone pain in my hip for 2 1/2 months while I was waiting for a spot to open up for this trial. My pain was so bad, that some nights I was lucky to get two hours of sleep. Then I had to get up and go to work. I was pretty much at the end of my tolerance level. Two days after my first infusion the pain was gone!!!! To me that is a miracle. I have the greatest respect for this drug.
Best wishes,
Barbara H.

[Becky]

I have not had mets but I know from personal discussion that Dennis Slamon feels that for women who are both ER+ and Her2+, he feels that Faslodex with Herceptin is the best one-two punch (followed by Herceptin with an AI). That said:

there have been few if any large trials on that combo but there have been trials using Arimidex + Herceptin vs Arimidex alone on women with metastatic disease (who are ER+ and Her2+) and the AI/Herceptin combo gave some women no progression for over 2 yrs (with no chemo).

The reason the ooph and then Faslodex + Herceptin would be a great combo to try is that in premenopausal ER+ women (but not Her2) who were just given an ooph - this worked just as well as if their ovaries were surpressed and they got an antihormonal. That's how potent estrogen is when you are still premenopausal. I am wondering if they might consider Faslodex+Herceptin+Aromosin (so you don't even make any estrogen from the adrenal glands and fat cells). None the less, Faslodex degrades and deforms the estrogen receptor so that any available estrogen cannot bind there (no lock and key). It is a good shot.

However - Barbara did mention that the trial could get filled and you should inquire about that too but this new plan is also good. Even if you push for the trial, the ooph should still be considered.

As for love... there are some things you know and I know you know.

[Bill]

Joy, it's good to hear from you, and I'm so happy to hear that you have a great "team" on your side. I might have to steal that "squirrel in a dishwasher line", it's a good one. As far as your relationship issues go, you are the best judge of that one, and as always, it sounds like you have your head screwed on straight and will do the right thing. A good man will understand and continue to be there for you. Love and best wishes, Bill

[Barbara H.]

Hi Joy,
I must say that I agree with Joy. If you are producing estrogen, you need to take care of that issue since you are ER positive. I don't understand why that issue hasn't been addressed.
Best wishes,
Barbara H.

[SoCalGal]

Wow Joy - so much at once. Okay - sounds like you are on top of it all and I say that's good. Get rid of the estrogen and aggressive chemo makes sense.

Regarding the luv-life I don't know what to say. If things are okay in your relationship and you feel loved and nurtured then I would say leave it in place. Feeling loved and having someone to hold you makes a big difference and is good for you.

If there is a lot of drama and it's draining then maybe move on. If the drama is about trying to combine 2 grown up lives into one with all the logistics and hardships of merging kids and homes at this age then I'd forget the merge but stay with the man. Love is what makes the world go round. Corny but true. xo Flori

[rinaina]

Wishing you well on your oopherectomy and new treatment plan. You are such a trooper and I know you can beat this latest setback. As for your relationship, don't rush into decisions now while you are dealing with so much. Give it careful thought before you make any rash decisions. This way you will know you acted with your mind and not just your heart. Best of luck with everything Joy. You are an inspiration to all.

[Missyw]

Hi Joy,

I read your posts often and always draw inspiration from you. I just wanted to reassure you about the ooph. After the first day, things are pretty normal. A bit sore, that's it. I'll say a little prayer that this treatment plan is just what you need. However, it is comforting to know you have a great plan B (just in case).

Missy

[hermiracles]

Glad to hear you are getting some good and positive care Joy. Thats great!
Blessings
Hermiracles