Doxil May Be in My Future

Carolyns · 07-01-2009, 05:29 PM

Hi All,

It seems like I may not be able to wait to try to get into the TDM1 trial at this time. I don't want to jump ahead of myself but my markers continue to rise and my doctor thinks that we need to scan now. We believe that we may need to act sooner than the trial will open. I am SO incredibility happy for everyone here who is having such great success with TDM1 and it gives me such hope. But I would be lying if I didn't say I am heartbroken at the prospect of not having access to it yet again (this is my 3rd attempt). I know that I will get to a point where I will accept whatever drug we come up with next but right now I just feel sad at the prospect that it may not be TDM1.

My son is home and I don't want him to hear me crying. Maybe I am just pushing too hard to get on TDM1. I don't know but I may have to let go of that fight for now. Inscanity has a tight grip on me now and I feel so scared.

Thank you for listening.

Love, Hope, Peace, Carolyn

Jackie07 · 07-01-2009, 05:43 PM

Carolyn,

Sorry to hear that. Sounded to me your doctor has a plan that was not well communicated to you. I 'hope' with the 'love' from all of us, you will find 'faith' again. Though it is important to have 'peace' in the present.

We are listening... anytime. Warm hugs to you.

Carolyns · 07-01-2009, 05:59 PM

Hi Jackie,

Thank you for your reply. None of my friends get this part of my life and I think it would kill my parents if they knew the truth. Anyway, my doctor does have plans for me it is just that we both agreed that "ideally" this would be the time for TDM1. She encouraged me to do what I could to try to get TDM1 and she has done her part. But, she also told me that without expanded access, I would have to be able to qualify for a trial that was open (to heavily pretreated patients like me) when I show progression. Timing is a big part of getting into the trials. Everyone has tried so hard for me but the rules of the game just have not worked in my favor so far with TDM1. I had my heart set on getting into this trial. All of my research tells me that it is the next "best" step for me. I refused to believe that I would not get in one way or another. So, this is just me preparing to give up a dream... my doctor has done everything she could and can do for me. Now we have to consider the remaining chemos and she believes that Doxil is the next best thing for me.

That said, I guess that there is a small chance that the scans will not show progression that requires immediate action and I may still be able to wait. I am just really upset right now and don't have anywhere else to go but here.

Love, Hope, Peace, Carolyn

Barbara H. · 07-01-2009, 06:08 PM

Hi Carolyn,
I'm sorry that you are not able to enter the TDM1 trial at this time. It has worked for me, but it does have its issues. It is not as easy as Herceptin alone. It has lowered my blood counts and caused my liver enzymes to rise. It is a great drug for many, but not for all. I have been on it weekly for almost two years, and would love a vacation from it. However, that is not possible in a trial.

Hopefully, it will be approved next year and it will be successful for you. The good news is that there are also other targeted therapies in our future, and hopefully treatment will become easier.

I understand how sad you must feel right now, but I feel you have a bright future with many possible treatment options.

Best regards,
Barbara H.

Carolyns · 07-01-2009, 07:18 PM

Thank you Barbara. I am so happy that TDM1 is working for you and I know that it stinks to be in treatment all of the time... some better than others. Right now I am only getting about 4 months per treatment and it would be so nice to stay stable for a good length of time.

Thank you for your words of encouragement, they mean so much.

Love, Hope, Peace, Carolyn

chrisy · 07-01-2009, 08:24 PM

Carolyn,

Barbara said it well. Perfectly, actually.

It is such a challenge, threading that needle to qualify and get into trials. As if we didn't have challenges enough! It's disheartening to feel like you miss by minutes, or because of having too many, or too few, or the "wrong" treatments in the past.

I feel a window of some kind will open for you, if not with DM1 then with something else. I was at one point close to getting into a vaccine trial which required you to be NED (which I had been for 2 years). Then wham, instant progression! But that made me eligible for a trial of Tykerb/Avastin, which didn't get me back into remission but did keep me stable....for 8 months. Needless to say I was beside myself.

But the timing was such that I was able to get into the DM1 trial. In hindsight, I can see that each time a door closed, a window opened - I've even come to think of the Tykerb/Avastin trial as a cosmic placeholder for me.

I see now, that particular vaccine is entering Phase III trials (I was trying to get in the Phase I). I keep that in my future options folder...

My hope for you, for all of us really, is that you are able to get the right treatment at the right time. Don't give up, it can still happen.

Much love
Chris

Carolyns · 07-01-2009, 08:32 PM

Thank you Chrisy. I know what you mean and I really squeaked by with Tykerb. I will have faith and keep up my hope for newer better treatments. It is just that these crossroads are so scary and I was so hoping for TDM1 this time. Oh well, I guess I am not in charge after all... Okay, I think I have about worn myself out and it is time to go to sleep.

Thank you again for your kind words.

Love, Hope, Peace, Carolyn

Believe51 · 07-01-2009, 08:51 PM

Carolyn, I can only say that I understand your sadness about having your heart disappointed with a quest that did work out the way we dreamed it to. Your desire for this trial to become a reality and then a broken heart for a third time, that I can not even imagine. Do not give up your dream, keep it with you for the day that it can become a reality.

For now you will work with your doctor for the next course of action. I am praying for the same things you are, Carolyn. Hoping that the scans show no progression and allow you the time to further research more options. I am sorry that you are so disappointed but please keep the faith. Part of me is sad for you too to hear of this update on the trial but there will be something worth dreaming about soon. You have been in my thoughts and will remain there as you search for your answer.

And Carolyn, goodnight Sweetie, more pleasant dreams are in your future.>>Believe51