HONEST OPINION PLEASE!!: Are We Reaching For The Big Guns Too Soon??

[Believe51]

Today is the last day for my husband's WBR, he was 4 days behind in his pelvis radiaiton but has chosen to stop today due to some bad belly problems (for ex: he had a gas bubble that finally popped in his belly and he thought he was going to pass out). A scan in a few weeks and the chemo or gamma knife if need be.

Although we have done our research about the next regime, second opinions from DFCI & another top Oncologist here, and we feel pretty confident with the new journey, I'm scared. We have always embraced the fact that he was very ill and had a poor prognosis, but that never stopped us. It never stopped us from BELIEVING. We never will!!

As we sat quietly Friday night with ice cream on a park bench in a quaint town square on the water (yes...we cheated and we loved it, kinda felt like normalcy too!!).....it hit me. Like the hot asphalt burns your feet when you walk or the way the sun scorches an already sunburned face!!!!!! I panicked and warmth filled my body from my feet up and sweating I asked:

Tykerb/Xeloda, are we reaching for you too soon?? Are we giving up in panic before exhausting other options?? Are we making demands for something maybe we should not demand right now?? I know that is a question only we can answer for ourselves, we are not having second thoughts because a problem was pushed through, for we have researched and pondered these questions well. We have very educated people involved in his treatment and they have told us about those options and we are very aware. I know we WANTED THIS COMBO because we wanted this combo. Part of me does panic a bit, come on let's face it; Stage IV HER2+Inflammatory Breast Cancer with mets to all bones & brain!!! I do not know how much time we have here to experiment, if you will.

MY QUESTION FOR YOU GIRLS: (I am asking for honestly..no sugar coating, put aside your feelings for me and answer from the heart)

In your opinion(s) about the journey thus far from the posts and the bio below, "DO YOU THINK WE ARE GIVING IN TOO EARLY TO THIS DRUG COMBO?" and "IF THIS WAS YOUR JOURNEY GIVEN THE SPECS OF OUR SITUATION WHAT WOULD YOU TRY FOR A COMBO?" I know that everyone is different and maybe this is unfair as a question can go but I need you all.

It is not too late for us to change our mind, if the panic did not overwhelm me Friday I may not sound this desperate. Friends, I ask you all: "Are we reaching for the big guns too soon??"

Waiting For A Miracle...and commanding one soon!!>>Believe51

[sarah]

Obviously only you and your oncologist can make that decision but let's say it's too early, would it be a bad thing to use the big guns too early? I wouldn't think so. Better too early than too late. Is there some worry that if you use this combo it will lessen your choices if it doesn't get rid of it? given the stage IV and inflammatory part, I would want the atom bomb to hit it.
Remember it's your choice and no choice is wrong.
Keep believing and enjoying the ice cream and the ocean.
all the best
hugs
sarah

[hutchibk]

I definitely have gone through all of the panic and thought processes that you have described! I think we tend to think of the newest "big guns", whatever they are, as the last ditch effort... like nothing else will come along, like we can't go back and try some of the earlier stuff that we haven't tried yet, or like after this regimine there are no other options. Boy do I know all about that! I asked all of those questions to my onc. He is wonderful and assured me that we can always revisit many other chemos and treatments and there is still a list of many that we haven't tried. He also believes that we are not necessarily done with Herceptin either, just because I am on Tykerb/Xeloda. Pure conjecture here, but what if using this protocol makes the cancer even more susceptible and sensitive to something else from the past or in the future? (I think they are learning that about past Tamioxifen use) I think we have to keep in mind that we are on a continuum here. There are always other things to try if this doesn't yield the best possible results, and there are always other trials in the pipeline and we just have to stay healthy and dig in until the next new "big guns" are available.

Best of luck with Ty/Xel - a few of us here are having great results on it! And I will find out in 2 weeks whether it is kicking my brain mets on it's own (remember that they both cross the blood brain barrier, which is what your hubby needs after WBR) or if I will get targeted rads down the road. I am greatful that it is working for me, because I was bummed that the Herceptin didn't have the impact for me that it has had for others here....

[Carolyns]

Hi Believe,

I think that you are on the right path. It is the path that you have chosen and it seems to me, from reading your posts, that this choice has been well thought out. I have heard good things about this combo and I am praying to hear more good things from you soon.

I am glad that you broke the rules and shared some ice cream enjoying life on a park bench. Here's to many more ice cream filled days on a park bench breaking the rules.

Love, Hope, Peace,

Carolyns

PS - I go through panics too! Often it is after a great day when I feel totally normal and happy.

[Lani]

Perhaps you think it is his last chance and if he fails it early...

Cancer seems to be harder to treat the more of it there is. Possible reasons are that the center of a large tumor has little blood supply compared to the periphery (so less meds get to it), that there is less oxygen there so it turns up all sorts of nasty genes that let cells adjust to adverse conditions (heat shock proteins), that as the cancer progresses at each step it accumulates additional mutations and "ploidies" that make it even more unlike normal cells in terms of what they need to survive, what it takes to kill them...That is a reason to use the "best guns" you can early on( the explanation usually given for aggressive adjuvant and neoadjuvant theraoy) ...as they make more advances, you may want to be in the best possible position to utilize them

If you are talking about the way oncologist talk about giving one antihormonal and then another and then another rather than chemo to prolong the "quality" lifetime of those with metastatic bc("since they are going to die anyway," they say), I don't know if IBC is inherently less sensitive to antihormonals, or if male bc is inherently less sensitive to antihormonals, but paper upon paper state her2+ bc is less sensitive to antihormonals unless given with at least an antiher2 med in the metastatic setting. Faslodex may end up being the most effective antihormonal in her+ patients (Dr. Slamon has said he believes so in conferences) and is approved in metastatic bc patients who fail other antihormonals. Does that sound like what you and your husband are looking for?

Perhaps you have heard the oncologists talk that "since the patient is going to die anyway let's just give what will make them feel least sick for as long as we can"...but if you look at my multiple posts on how patients with her2+ bc brain mets are doing, and read the posts of the women here who have had brain mets, I doubt you will feel like throwing in the towel at this juncture.

tykerb and xeloda are not the final possibilities...they are just the latest to be FDA approved. Perhaps a trial of pertuzumab, herceptin and Iressa may start soon(the one I quoted earlier that "cured " mice of her2+ breast cancer) should he not do well and need to be on a clinical trial, but there are a lot more combinations of agents for him before that according to those who contribute here.

I think you are afraid it won't work...that is true of every treatment he has had so far. He's still here and you are still there for him.

Utilize every resource on this board and elsewhere to help him.

And ice cream helps everything (at least in the short term!)!!!

[chrisy]

Dear Marie,
First of all, having some ice cream and feeling some normalcy isn't cheating, it's LIVING and you are entitled to grab as much of that as you possibly can!

Sorry, I haven't been keeping up online lately. Is T/X being recommended as the next step or something else and YOU are wanting it?

You do sound very scared, and understandably so. Ed has really been put through the wringer and is fighting a mighty battle. There are all kinds of weapons in the arsenal, as you know.

My opinion is, if you think Tykerb and Xeloda are the big guns, pull them out! Even if they are not necessarily bigger (just meaner!), I think they are better in many ways. Not least of all is that they are more targeted - Tykerb of course targets specific things, and Xeloda only converts to super nasty toxic stuff INSIDE the tumor.
So you have the double advantage of destroying cancer while being less toxic to the good cells. That is not a small thing - yes, drugs and radiation and surgery are all weapons in the arsenal. But so is Ed's own vitality and strength - and it seems he may be ready to recharge. Both my oncologists favor treatments with "maximum efficacy and minimum toxicity" so that you have your PERSONAL resources to bring to the fight, for a long time.

All things considered, I think Tykerb/Xeloda would be a reasonable choice for you at this time. Just my opinion. And as others have said, this is not the last stop, you still also have "all the other chemos" out there as well as new ones in the pipeline.

Stay strong.

Much love
Chris

[Becky]

Dear Marie

Ed has not had many chemo regimes yet. I think you need to hit this as hard as possible in a hope to really knock the "heck" out of it. Go hard on it. Also, there are many, many combinations left if this isn't the magic ticket.

We are here and thinking about the both of you.

[kareneg]

Hi MARIE,

I agree with the other girls, hit this cancer hard and knock it right out.. There are many many more options too. I am living proof as are many other women here are too. Thank you for all your encouraging words and know that Ed and you are in my prayers everyday. Here's to kicking some cancers butt!!!!!!!!!!!!!!!!!!!!!!!

[SoCalGal]

I agree with Lani that TY/Xeloda isn't reallythought of as a big gun but, BUT if it works, it is such an "easy" regime to tolerate and for many it is very successful - targeted therapies can be very good at hitting their mark. I don't have any other advice, other than to remind you that when you feel the most panicked is probably a good time to just breathe and stay present, hold each other, and do something to distract from the panic. That panic will pass and you will figure it all out. We are all with you on the path. Blessings and good for you both on the ice cream.
Flori

[Mary Jo]

Hi Marie,

I don't have any advice or an opinion on whether the treatment plan your husband will be embarking on is "too early to bring out the big guns" as I've never been down that road.

But I can offer you love, support and a prayer for God's Peace and wisdom to descend upon you both. Such a wonderful wife you are to Ed as I'm sure he is a wonderful husband to you.

God Bless you both,

Mary Jo
"For we know that in all things God works for the good of those who love Him and were called according to his purpose." Romans 8:28

[Mary Anne in TX]

I'm one of those that believe in hitting it with all you can as fast as you can! I thought at the time that I did a lot when I was diagnosed, but if I had it to do over, I'd have taken all I could. I do believe that it is easier to kills those little devil cells earlier in their life.
You have to believe in what you are doing. But I want to support you doing all you can and trusting that doing more while he feels the best is a good thing!
Lots of love and prayers to you, mary anne

[LAURIE]

I do not know enough about chemo drugs to make an educated opinion, but I do know it's not too early to have another ice cream cone!!! I feel so educated about ice cream that I might just have one right now.

It is so good that you are questioning, it helps us all become educated and keeps those onc's (and us)on their toes. I found it to be a compliment when my Onc said I was a challenge as a patient. I always question him. One day he caught me looking at his diplomas on the wall.

[tousled1]

Marie,

Any decision you make about treatment is the right one if you feel good about it. Ed has been through so much and Tykerb/Xeloda just might be the ticket he needs right now. From what I've been reading there have been great results with this combo and is well tolerated. Glad you managed to get some normalcy back in your life. You're a great caregiver and Ed certainly is a lucky man to have you by his side. You are in my prayers.

[Beckie]

I agree with everyone else, and that is what I have chosen to do also. If Tykerb/Xeloda works and has little side effects - wonderful! If not, then there are other combinations to try. I will continue trying whatever I can to keep the cancer from progressing. I'm praying God will give you peace about your decision. And keep enjoying life ...and ice cream!

Beckie

[Sheila]

Marie
I have to agree with most on here....if the Tykerb/Xeloda is the best bet right now, by all means go with it. It is only a big gun because it is the newest gun...there will be more. There are many other things that can be tried later...I'd go agressive and this would be it. Hoping Ed tolerates it well...it seems to be a fairly good regime on the body, and by taking the drugs orally, you will have plenty of time for ice cream!

[Barbara H.]

Marie,
Tykerb and Xeloda may be considered aggressive treatment, but it is also an effective combo for many here. It also appears to be an easier treatment than some of the others. I wish your husband all the best and hope that he receives a good response.
Best wishes,
Barbara H.