"Help Me"

Redwolf8812 · 06-06-2013, 06:02 AM

Yesterday, we asked the doctor some hard questions and received honest answers. My next scan is on the 25th. If it shows tumor growth, I have other options, most are hard chemos, but there's only a 20-30% chance that they will work. The miracle drug Herceptin doesn't work in 30% of patients. I'm in that 30%. I most likely will try at least one more chemo but I don't look forward to the harsh side effects. The treatment (TDM1) I'm on now has been fairly easy so I pray that the scan shows it's working.

When I decide to stop all treatments, she told me that liver failure is pretty painless. I would just fall asleep, be in a coma for a couple of days, and then pass away.

Not the kind of answers I wanted, but it is what it is.

"Help me. I know Jesus loves you very much and that you deserve it, so talk to him on my account..." - Saint [Padre] Pio de Pietrelcina (1887-1968), Capuchin

michka · 06-06-2013, 06:25 AM

Penny, I understand your fears and I will be waiting for your scan results with you on the 25th hoping they will be good. Herceptin never worked for me. I had it in a neoadjuvant setting 6 years ago and then when I became metastatic. TDM1 is working for me. Nobody has explained to me why. I hope with all my heart you will have the same luck. Hugs. Michka

SusanN · 06-06-2013, 07:23 AM

Penny,
I am new to this site...yet I believe with you that God is Faithful, though you are feeling scared, He walking through this with you!! I'm praying with you, believing...trusting...asking that He gives you much strength, peace and wisdom...and that you feel His warmth!! HUGS!!

phil · 06-06-2013, 07:52 AM

herceptin never worked for long with Lorraine either, but tdm-1 sure has ! , and perjeta /herc with others . there are a lot of combos out there ! so Keep the Faith !
Praying for great scans !

schoonder · 06-06-2013, 08:07 AM

Penny, one of the Emilia trial inclusion criteria, a trial which became the basis for T-DM1 approval, required that patients had received:

"Prior treatment for breast cancer in the adjuvant, unresectable, locally advanced, or metastatic setting must include both a taxane, alone or in combination with another agent, and trastuzumab, alone or in combination with another agent."

So these participants no longer- or ever did respond to trastuzumab.

T-DM1 however for many of the Emilia trial participants showed strong and lasting signals of efficacy, with reduced toxicity. I so hope this drug will also proof to be beneficial for you.

'lizbeth · 06-06-2013, 01:17 PM

Penny,

I'll pray that you have the most amazing good news from the scan after TDM1. And that you have a looooong run of shrinking mets and happy scan results like Lorraine.

I read about a lab in Greece that determines the best chemo by separating circulating tumor cells from your blood sample and then doing what Rational Therapeutics does with live tumor spheroids - checks to see which chemos are most effective at killing cancer cells.

It was written up in Defeat Cancer:

Chemotherapy Sensitivity Testing

Two patients with the same type of cancer can be sensitive to a whole different array of chemotherapeutic agents, so instead of grouping all of our patients together and giving them all the same agents, we do chemotherapy sensitivity tests. These determine the specific chemotherapy agents that their tumor cells may best respond to. There are two labs that we use for this purpose; one is in Greece, the other is in Germany. The lab in Greece is called Research Genetics Cancer Center (RGCC). Here, they extract circulating tumor cells from patients’ blood samples, culture them out, and then expose them to different chemotherapeutic agents. Results are then calculated according to the percentage of cancer cells that are killed by the agents, which may be 50 or 80 percent of a culture—or none. Then they choose the agents that the cancer cells have the highest response rate to and recommend that these be used for treatment. The labs can also provide comprehensive information on the genetic makeup of people’s cancers, which helps us determine appropriate therapies for our patients. Once we have this information, ideally, we will put together two different treatment regimens for each of our patients, with each regimen consisting of three different medications, which we alternate. The purpose of doing this is to reduce the cancer cells’ resistance to the drugs. It takes ten days for the results of the Greek test to come back. Another advantage of this test is that only a blood sample is required to do it, rather than tissue from the tumor itself, so unlike some types of chemotherapy sensitivity testing, it’s safe to use in those with metastatic disease.

I know you have reactions to many of the treatments. This may be a bit unorthodox, but it may also improve your chances beyond 20-30% that the harsher treatment would work.

I discovered it on my friend's doctor's website:

http://cancerbooksource.com/defeat-c...er-strategies/

Well nice to know liver failure is pretty painless. I'd rather that not apply to you!

Fingers crossed and direct line open to God . . . .

Cat · 06-06-2013, 02:18 PM

Penny
Sending up some prayers for the one that works and peace in your mind to be able to relax with it. This roller coaster of treatment is rough but we are tougher. Hang in there. Hugs
Cathy

Ellie F · 06-06-2013, 02:41 PM

Hi Penny
Will ask The Lord for some good news in my prayers tonight.
Hugs
Ellie

tricia keegan · 06-06-2013, 04:24 PM

Penny I hope this current regime continue's to work for you but I think I'd appreciate an Onc like your's who tells it like it is and doesn't sugar coat anything. Sending good wishes and much love and really hoping this works for you.

NEDenise · 06-06-2013, 05:10 PM

Penny,
I'm glad you asked the tough questions now, when it's 'safe' to hear the answers. Knowledge is always a good thing! And I know your onc is top notch. I'm also glad that you let us know that
(a) your scans on the 25th may give you great news (which is what I'm thinking will happen), and
(b) if the news isn't stellar...you still have options

Those two things, combined with your incredibly strong faith in a God who loves you personally and passionately...make me not so much worried about you, as happy to pray for good results and a peaceful heart.

I feel like you're not "borrowing trouble"...just gathering information.
It sounds to me like you're trusting that you're in good hands medically...but more importantly...the Lord has your back.

I love the Footprints metaphor...and since your legs have been so sore, I imagine one set of footprints and one set of wheelchair tracks in the sand. But, I don't think it sounds like it's time for the Lord to carry you yet.

Lifting you in prayer...as always
Sending love and light to you too...
Denise

Bunty · 06-06-2013, 06:35 PM

Penny, it's a sad reality that we sometimes have to have those days when meeting with medical teams when it's anything but easy or pleasant. But knowledge is power, and good to know how things stand. I will pray that the scan results on the 25th prove that TDM-1 works for you.

You have other options yet as well, and as is mentioned so many times on this board, 'keep the faith'.

IrvineFriend · 06-07-2013, 04:54 AM

Penney,

It seems this drug was designed for people just like you - I can only imagine how scary it is for you, but there are so many signatures from this site that can confirm that a new treatment really CAN be the bullet to reach the goal of NED. Prayers sent that you will successfully respond.
-Julie

sarah · 06-07-2013, 10:50 AM

TDM1 seems to work for a lot of people that Herceptin didn't so I am hoping along with your other HER sisters that it works for you also.
hugs and love
sarah

lkc Gumby · 06-07-2013, 11:28 AM

Penny, My prayers are going out that these new txs will work, and your scan is better. I will also pray that you keep strong. " God is with you always"

KsGal · 06-08-2013, 01:13 AM

Dear Penny.... ((hugs)) I believe TDM1 can work miracles, and it is working one for you right now. And, if the other drugs work for a quarter of people, there is no reason to think you would not be a winner in that lottery. I do understand not wanting to do the harsh chemo again. I feel the same. We are all here praying for you and thinking of you...Those scan results are going to be all good news. Sending lots of positive energy your way.

Paula O · 06-08-2013, 03:05 AM

Thinking of you and praying for you, Penny.
Paula

CoolBreeze · 06-08-2013, 01:14 PM

I have been on herceptin 4 years now - I can't say it doesn't work because you can't prove a negative. I have progressed and gone metastatic on it, but maybe if I didn't have it I'd be gone by now, so maybe it's slowing progression some. It isn't working perfectly but it might be helping, who knows? That's why my doctor keeps me on it.

I saw my first shrinkage on gemzar and perjeta. Gemzar is very tough on my marrow and I can only get one infusion a month now as it takes that long for my blood to recover, but it seems to be holding steady at 3 cms, and I am in prep for SBRT.

My understanding of why TDM1 works when herceptin may not is because it is herceptin along with a very powerful chemo drug. The drug, without the herceptin part, can't be given alone, it would be too toxic. But when mixed with this formulation of herceptin, it guides the chemo directly to the cancer cells and nowhere else. So it is not as hard as a regular chemo and it works better. That may be a layman's understanding, but that's what I take from what I've read.

Don't give up yet. TDM1 has worked for lots of people, and I know a woman who had bone, lung and liver mets who was in hospice, started TDM1 and got to NED! Unfortunately, it did end up going to her brain but cyberknife controlled that and I think she's on her 12th year with mets now. She was in the early trials.

And, for the record, my mother died of liver disease - she had cirrhosis and it was like your doctor described. She went into a coma and never work up. I don't think she felt any pain, except that she got esophogeal varices at one point (which was how she was diagnosed), but she also had alcoholism and so her liver was just scarred rock. I don't think that is too common with cancer patients.

But I don't think we need to go there yet. Think positive, this drug will get you NED.

ElaineM · 06-08-2013, 02:46 PM

Please try to keep the faith. You may have options that you or your doctor have not considered yet. Keep doing your research and don't leave any stone uncovered.

Rolepaul · 06-12-2013, 09:01 AM

Ask about paring up the Perjeta and TDM-1. Rumor from a source that I cannot give more info about says it can grab a large percentage of the 30% that Herceptin alone cannot. Also exploring a really new treatment that might go to phase 1 this month. I will PM you when I hear back from my source to see if they will include you.