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