The treatment dilema, no T-DM1

[Sheila]

I have waited to post to make sure all bases were covered. I went for the preliminary on the T-DM1 trial here, this was a trila that measured the QT wave in the heart before and while on T-DM1, and if you progressed, Pertuzamab was added. After a 8+ hour day in Decatur, I found out my QT wave was borderline of even being accepted, my EKG showed a possible Left Branch Bundle Block, which they of course have attributed to chemo damage of the heart, I was told I don't need herceptin as it is probably doing nothing for me, and I felt very uneasy with the whole setup. I was number 2 in the trial that has been open since August, out of 50 applicants. After all of that, I did not have that warm fuzzy feeling about going here for treatment. I am one who believes the oncologist is a vital part of treatment and healing, and if the synergy is not there, you are missing part of the treatment plan.

I did call Loyola again, as their trial is different, but they are only taking 2 patients (both from Loyola) for the heavily treated metastatic and the rest will be newly diagnosed metastatic. They are keeping my info so if they are allowed to add more, i will be called....kinda like being on the "will call" list.

In the meantime, I have begun the Tykerb regimen...I was really beginning to have lots of discomfort in my left chest side and axilla, probably the sign of things growing with no chemo. I took the advice of the Tykerb Divas on this board, and started with 3 tabs a day, they 4 and am almost ready to start the 5 tabs...so far so good, no diarrhea or any problems...it made sense rather than to start with the 5 tab dose and have to cut back...

I will see my oncologist tomorrow, and keeping my fingers crossed that the Tykerb Diva route will stabilize me until the T-DM1 fairy comes to get me....

Thank you for all your prayers and thoughts, this has been a rough time....in my heart, this seems the right path at this time.....at least until i know I can qualify for the T-DM1.....now to see a cardiologist, and make sure everything is OK with the heart.

[Karen Wheel]

Sheila - I'm thinking of you- hope that things look up here soon for you! That the pills you started help the pain for you!

:-) BIG HUG! Karen

[alicem]

Sheila,

I also hope the Tykerb keeps things at bay while you wait. I can't imagine the waiting . . . it must be so frustrating. I hope the TDM-1 fairy comes to visit soon, soon, soon!

Love, Alice

[WomanofSteel]

Sheila, I understand your frustration. It is a shame that the doctors there weren't patient friendly. I hope you do well with the tykerb and in the meantime I will say a little prayer that you hear from the other trial soon. Hang in there! Jacquie

[Mary Anne in TX]

Hoping that fairy shows up really quickly! I know that things are super stressing, but you are so wise and I think, have made such good decisions for you. I agree that the onc is such a big part of the treatment plan. Now, listen up TDM1 Fairy Girl....HURRY!

[tricia keegan]

I'm sorry the news was'nt better for you Sheila and can only add my prayer's and thoughts along with everyone else for this fairy to make haste to you. ((((hugs))))

[chrisy]

Sheila,
You're right, the partnership between you and the oncology team is really important - as of course is a beating heart.

I think you must be feeling some sense of relief to be moving forward with something - and I know you always wanted one of those purple diva bags. Good for you for knocking some sense into your insurance co so that you can begin therapy.

You know the Herceptin/Tykerb combo is getting a lot of discussion, and in fact new data is being presented at San Antonio (the very first item on the Saturday general session agenda). You'll have to remember not to tarry over your texas shaped waffle that day...

Glad to hear you're easing into the diva aspects of it - most people can figure out how to manage it pretty well.

Take care
Chris

[Rich66]

"I was told I don't need herceptin as it is probably doing nothing for me"
Seems like the shift is towards continuing Herceptin post progression and adding Tykerb. i.e. total her2 blockade:
http://her2support.org/vbulletin/showthread.php?t=41397
Will you be continuing Herceptin with Tykerb? Can you get Tamoxifen (cheap/low tier drug)? It has non ER mechanisms that can synergize with chemo and can be helpful by themselves:
http://her2support.org/vbulletin/showthread.php?t=41711
Do you know whether your mets are still ER-, Her2 +? I know that's not easy to answer definitively, even with a single mets biopsy. And Her2 treatment can increase ER components:
http://her2support.org/vbulletin/showthread.php?t=38998

The new thinking on continuing Herceptin begs a question. Just because something isn't doing "enough", is it logical to assume it's doing nothing? When my mom was diagnosed with mets, her then onc canceled the Arimidex. It seems like things ramped up between that and treatment decision. So..was it doing nothing or just not enough? And I am finding there are numerous strategies to rensensitize tumors to therapies despite the prevailing tendency to scratch them off the list.

[caya]

Good luck Sheila with the Tykerb, hope your onc. has some good ideas when you see him tomorrow.

Sending big hugs from Canada.

all the best
caya

[michka]

Oh Sheila! I hope you will support Tykerb but moreover that you will be able to get into a trial!!!! I hope the Cardio. results will get you back fast on the T-DM1 trial track. I believe in the T-DM1 fairy! Love.
Michka

[StephN]

Dear Sheila -
Been following this whole 2-month episode with you. I know that the Idaho T-DM1 trial is also following heart functions as that is part of the FDA mandate for approval of this drug.

I don't recall any evidence that Tykerb causes heart damage, so this may be a good chance for you to get your heart thoroughly checked out while beating back those tumors.

Will be interesting to see if the opinion of a top cardiologist squares with the folks at the trial location.

Take care, and I look forward to seeing you in December.

[Chelee]

Shelia, As you know I was just out to see Dr. Slamon. Since I can't get into the TDM1 trial at the moment...their 2nd recommendation for me was the Tykerb/Herceptin combo. As I'm mentioned before it doesn't seem like all onc are up to date on this combo yet? My onc & even COH onc said you have to add chemo to that combo or it won't work. That sure isn't what Dr. Slamon says. They told me it WOULD work. I was told because I am so Her2 it will work. Since being told this I've done alot or research & see there have been alot of clinical trials on this combo with great results. Plus I know Dr. Slamon knows what he is talking about rather my onc or the other one agrees with him or not. These onc's need to stay up to date & current which I'm sure isn't always easy.

Here's to Tykerb kicking butt and getting you back to being stable...then hopefully things will fall into place so you can still get into the TDM1. The results have been great as you know. I'm glad you at least got started on something because I know the stress of sitting & waiting with no trt...talk about stressful. Here's to you getting the all clear from your Cardio doc. I'll be keeping you in my thoughts & prayers.

Chelee

[Barbara H.]

Let's hope that the T-DM1 Fairy doesn't take too long. If you are HER2+ Herceptin can work when an additional treatment is added. I am now on Tykerb with Herceptin as recommended by my oncologist, whom I trust. My face is clearing up and so far I have not had issues with having to rush to the bathroom. I am on 4 tablets a day.
I hope this works for you, Sheila, and good luck Chelee.
Barbara H.

[ElaineM]

I hope all goes well with the cardiologist. I have my fingers crossed that the Tykerb will help until you can get into a good trial.
Good for you in following your intuition. Sometimes we know when we are not going to be able to work with someone. There is a better opportunity ahead for you.

[Pam P]

Sheila I'm really disappointed to read this latest encounter with the trial process. I hope you'll get good reports from the cardiologist and more encouragement from your onc. today. It sounded like your experience with the people in decatur was that they were only interested in the data of the trial mechanism and not the humans involved. That trial is offered also in Sioux City Iowa. I've emailed the contact person on the website, Patty Solberg, twice asking for information for myself. I've not even had a reply from her! I'm hoping all the good reports from the tykerb / hercpetin paring are going to be your experience with it too.

[Joan M]

Sheila,

Your spirit in pursuing this quest really inspires me. All the research, traveling, dealing with insurance companies (the ultimate challenge) is a lot of work, and it's emotional, too. We have to be our own advocates, and at times it isn't easy.

Sending you a lot of hugs,

Joan

[vlcarr]

Shelia,

Wishing you good results on the Tykerb-it sure did work wonders for me as you can see below. As a relative newby to the group, your posts always give me such hope and strength to fight this thing called cancer.

Keeping you in my thoughts and wishing you healing.

[Patb]

God bless you, I am just exhausted reading all this.
I hope the tykerb works and you can go on the trial
when you feel comfortable with it. Its all a gut feeling
with me and whats going on so I understand.
patb

[jhandley]

perhaps you can start 100 mg a day of Q10 to protect your heart?
Works for me!
Jackie (down under)