Trial Trastuzumab-MCC-DM1 (I think it's working)
 

Hi Everyone,
I just wanted to give an update of the trial I am on. I just received my second infusion last Thursday. I had been off all treatment since the end of May because you have to be off treatment for four weeks to qualify. Unfortunately, as a result of no treatment, my bone mets had really started to grow and become painful. By August it became very difficult for me to sleep. In fact, one night the week before I started the trial, I only had two hours of sleep before getting up and going to school. This was all due to pain. No pain relievers would help and prescription pain relievers make me nauseous. In reality, I had been off chemo other than Herceptin since November when I had to have brain surgery due to necrosis. I really felt as if I was in bad shape and was desperate to begin this trial

My first infusion took all day. The needed blood work, consultations, and the infusion took 1 and 1/2 hours. Then I needed to be observed for four hours with constant temperature and blood pressure monitoring. After a final blood test I could leave, but had to return on Friday, Saturday, and Sunday for additional blood tests. This is a problem for me because I have bad veins and the trial protocol will not allow blood tests from my port.

During my first infusion my nose started running and I felt quite achy. Unfortunately, that night I had to give a speech and meet will my parents at Curriculum Night. It was difficult, but I did it. The next day I felt pretty awful, but went to school. By that evening I had a fever of 101F. At first I thought is was a reaction to the new drug, but now I think I caught a virus from my students. Three were out that week with colds and fevers, and by the beginning of the past week two of the other third grade teachers had it. I probably will never know for sure.

This past Thursday I had my second infusion and it was quite uneventful. The following day I was tired, but went to see "Wicked" that night with no problem.

Here is the good news. By the second night after the first infusion I was able to sleep with virtually no pain. After being in pain for two months, this feels like a true miracle to me. My hip is still sore during the day and I favor it somewhat, but I feel that this treatment is quickly making a huge difference. It is also very easy to tolerate. Therefore, if you are looking for a treatment option, I would definitely investigate this trial. I also wonder if there is anyone else on this website how is taking this drug.

I will continue to give updates, and will know more after I have my scans later this month.

I give my best to everyone. I have read everyone's posts, but just haven't had time to respond. The beginning of the school year is always very hectic.

Best regards,
Barbara H.

Barbara, I am also a teacher (first/second grade), so I was very inspired to hear your struggle with your pain and work. I am keeping you in my thoughts and wish the best for your trial. It sounds as though great things are happening in the trials! I also like to hear the steps that the trials entail. You give the rest of us much hope! Thank you for your post!
-SandyR

Barbara, thank you for posting your experience so far with the trial. It's so encouraging to hear you had such an immediate response! Please keep us posted, and thanks for participating in the trial. Hoping this drug will advance and become avaliable, as it really sounds promising. I checked into the trial but have had too many chemo regimens to qualify, but maybe will be able to have it down the road.

<3 Lolly

Barbara, how are the treatments going? I am glad to hear you are sleeping better. Please keep us updated on how it is going.

Another Barb!

Barbara,

How is the treatment going? Have you had a scan recently? Thinking of you.

Julie

Hi Barbara,

I am praying that you are doing well also, when you can let us know how you are. Your in my thoughts and prayers.

update
 

I just had scans yesterday. I am doing much better and am currently free of pain. I really believe that this is a miracle drug. It also has minimal side effects. Unfortunately, this drug elevates liver enzyme levels in some people. Mine were too high last week to be treated. Hopefully, all will be well next week. I will let you know more when I receive the results of my scans.
Barbara H.

thanks Barbara for all the updated ...I'm fallow all your post ..searching about how are you doing ...you know sister is so important to me............. take care youyr self and I have a question how we can make the liver enzime get low (but naturally ) ???

elevevated liver enzymes
 

Elevated liver enzymes are a side effect of this drug in many people. I am also on a very high dosage. My doctor told me not to use Tylenol or alcohol. Other than that, there is not much I can do. He does not want me taking supplements to lower them. Whenever they go too high, I just need to skip my treatment for that week. Hopefully, that will do the trick.
Barbara H.

I hope skipping one treatment gets those liver enzimes in check! You are in my prayers and I am so glad there is no more pain!

Barbara,

I am praying for good news on your scans. I am happy to read that your pain is less.

Hugs,
Lexi

Hi Ladies I am new here, I have been a bc warrior since 1996. I will be starting this same trail that Barbara is on hoping for the same quick response. I have 6 tumors on my neck.

Marsha

Barbara, you and Lily are in my thoughts and prayers. Please let us know how you're doing.

Patrice (also from Newton)

update and hi to another member from Newton!!!
 

Wow, Patrice. We should connect. I am doing well. My bone scan showed progression, but no new lesions and my oncologist said it can light up from healing. My cat scan showed improvement with a few lymph nodes that had enlarged due to the bone mets, and my MRI is fine. Everything else is NED. The good news is that the CEA went from 17 to 7. This marker is the best indicator for me. It was out of control because I was off treatment for so long.

I feel this is a great trial and I hope more members will have the opportunity to try it. It is easy to tolerate and I am able to continue my teaching.

Best regards and Happy Thanksgiving to those who celebrate.

Barbara H.

Barbara,

That's great news!! Thanks for sharing. As a reminder, did you have any success with herceptin or tykerb prior to this trial?

Eric

Barbara,

Such good news! I am happy that you are feeling well enough to teach. I wish you continued success.

Hugs,
Lexi

To Eric
 

Hi Eric,
I was never on Tykerb. Herceptin alone worked for me for 1 1/2 years. When I started on it I had a 3 cm brain met, skin mets, and lung, and liver mets, but no bone mets. It wiped everything out, but bone mets appeared. I then went on Navelbine, but started to progress at this time last year. I then had a biopsy, but it didn't show if my ER/PR markers had changed. I then waited for this trial and am now in it. As I stated before, it is very easy to tolerate. Herceptin has kept my other mets at bay.
Best wishes,
Barbara H.

thanks Barbara
 

Looking forward to continued great news for and from you.

Barbara,

Great news, wish you continued success on this trial.

Julie

Barbara,

Reading your post this evening before Thanksgiving has given me one more thing to be grateful for. I'll private email you after the holidays to see if you would like to get together! I'd love it.

Warm regards, Patrice

Barb.. any updates... how many doses have u received.. what dose are u getting..

Doing Great!!!
 

Hi Everyone,
I had a bone and cat scan last week and saw my oncologist today. My cat scan looks good and my bone scan indicates that the bones are healing. My tumor markers are great indicators for me and are now both normal. My CEA is now 1.7. I am hoping that it will eventually be under one. This is a great trial and I highly recommend it . It has minimal side effects, and I can live a normal life and continue working. I am on the phase 1 weekly trial.
Best wishes,
Barbara H.

Barbara,

Such great news and couldn't come at a better time of year. Congratulations. Praying for you that the trial continues to give you great results.

Barbara - FANTASTIC!!!! What great news. A CEA of 1.7 indicates that you are well within the normal range. What a great way for you to celebrate the new year. This appears to be a very exciting new drug and you and Lily are wonderful trailblazers.

Eric

this is great news barb... how do they do the weekly dose.
the phase 2 trial dose is 3.6 mg/m2 .. what is the weekly dose you are on...

run to live

Dear Barbara ...you was one of the main reason to get me on this trail ...when I ask my Doc about trials he mentioned about this and in a second I remember your post ...and get exited ...and ask for it ...after all the test I think I did a great choose because my ct scan are great , my Doc said ...and thanks to you ..I really hope so that another Lady's on this site get in to ..like us ...plus my thoughts was genentech need all her costumer back (because is for patient who herceptin fail) so that way they still doing so a great sales in the future ....congratulalion you ct scan give me more hope ...like mine also give hope for somebody else ...

Dear Barbara and Lily - so glad this trial seems to be working so well for both of you! ((Big Hugs)) Wonderful!
Blessings
Hermiracles

Barbara, what great news & wonderful way to start the New Year. You'll continue to be in my thoughts and prayers.

Warm regards, Patrice

Dear Barbara,

What wonderful news I am so happy for you. Have a wonderful holiday. You are always in my thoughts and prayers. Please keep us posted on how you are doing.

marsha.. have not seen you post in awhile.. hope all is well.. how is your treatment going..

Wowee!
 

Dear Barbara and Lily -
I am a little slow to get over to this part of the forum, but you have both been in my most POSITIVE thoughts and GOOD wishes.

So great to hear good news from you both at a time when we really need it! We know Barbara was a good responder to Herceptin so it was with every bit of faith that you would do will in this new trial.

KEEP on responding, ladies. Maybe with results like these they can fast-track this drug, and more oncs could use it off-label for those not in a trial area.

PTL It's WORKING!!!!!!!!!!!!!
 

Hi Ladies,

Just wanted to update you. My scans looked great the neck nodes have skriked in to half the size they where. No new ones! Liver is stable, just a little progession in the hips and spine. Not surprised I am sore more often. So I am going into 08 rip roaring to go!!!
God has truly blessed me so many times through this joruney. I am so humbled and grateful for all his love and my friends! Also all of you have been so full of Grace for me. Thank you and have a peace filled new year!

Barbara, Lily and Marsha,
Great news on your scan results!!! As Marsha above says, go into '08 rip roaring!

<3 Lolly

For MPB
 

Hi MPB,
You may just be sore. In the beginning the bone scans can show progression even when the cancer is not progressing. You will probably need to wait for a few more scans before you can determine what is going on. I have been on the trial since September and the CT and bone scan is finally showing response to treatment.

This is what my most recent CT scan on 12/20 indicated:
"Metastatic involvement of the bones is apparent, with areas of increasing sclerosis in comparison to prior study, possibly a treatment effect."

My bone scan indicated: There has been a slight decrease in the intensity of the radiotracer uptake associated with lesions in the right clavicle and the right hemipelvis. The additional lesions, including the one in the T11 and L1 vertebral bodies appear unchanged.

While this does not sound great, my tumor markers are now normal, and they are an excellent benchmark for me. I have the sense that it takes a while for these scans to show measurable response in the bones.

Best wishes,
Barbara H.

marsha.. how was your first treatment..

runtolive

barb.. how has your treatment been going.. long time no hear...

runtolive

Everything is going well. I had a CT scan and bone scan today. There is really no news and nothing to post until I receive the results of these tests.
Thanks for thinking of me.
Barbara

can't wait to hear
 

hopefully the drug wipes out all the pain in your bones... like you say .. feels like its working. stay strong..

mcc- dmi trial
 

I am very much interested in this trial. Can anyone tell me about it? What are the requirements ? I had taken hercepton for over 2 yrs. till I had progression. Please anyone? Are these trials at certain places? Thanks linda