[jsnow527]

Re: Looking for new treatment

by jsnow527 on Mon Apr 18, 2011 4:03 am

Jack & Ricardo,

Well, I'm confused but here is the information that I have been looking at:

A Study of hLL1-DOX (Milatuzumab-Doxorubicin Antibody-Drug Conjugate) in Patients With Multiple Myeloma (Clinical Trial: NCT01101594)

"hLL1-DOX (the doxorubicin conjugate of milatuzumab)"
"This study is a Ph I trial to test the safety of the study drug, hLL1-DOX at different dose levels in patients with recurrent multiple myeloma. HLL1 is also known as milatuzumab and is attached to doxorubicin in this clinical trial."

Included in Exclusion criteria:
"Cumulative life-time anthracycline/anthracenedione exposure exceeding 300 mg/m2 (including daunorubicin, idarubicin, epirubicin or mitoxantrone)"

Looking closer, it looks like this is a combo of milatuzumab with doxorubicin -- or whatever is meant by conjugate.

I thought I had seen something similar in the elotuzumab trials but I'm probably confused. Unfortunately the trials I see out there now for elotuzumab either exclude prior Revlimid treatment or exclude light chain only secretors.

It's great that there are a lot of options out there but it would be a lot easier if there weren't so many.

Thanks for helping me to understand this better.

Janet

[Jack]

Re: Looking for new treatment

by Jack on Mon Apr 18, 2011 9:18 am

Hi Janet,

Ah yes, you would want to avoid milatuzumab-doxorubicin conjugate if you're worried about your cumulative doxorubicin exposure. You're right that the conjugate is a combo of milatuzumab (an antibody) and doxorubicin (a chemotherapeutic/antibiotic). The two molecules are attached to one another to make one supposedly more powerful and also safer drug.

It looks like milatuzumab was originally being tested by itself and is now being tested as the doxorubicin conjugate. I guess they'll compare the results and decide which is really better.

I haven't heard anything about elotuzumab (an antibody) being bound to doxorubicin. I think they're testing elotuzumab in combination with some of the novel agents (Revlimid, maybe Velcade). So, that one might be a safe option for you if you're eligible for any of the trials.

[jsnow527]

Re: Looking for new treatment

by jsnow527 on Thu Apr 21, 2011 8:07 pm

Well, my local onc says that there are no trials that they can do locally for me. My specialist at MD Anderson is out for 6 weeks having surgery. So I feel like I am on my own.

I have taken an interest in Biaxin (the "Bi" of the BiRD treatment), another antibiotic. It is something that I have not had and have I have left a message with my local onc. that I would like to add it to my current treatment for the next round. We are having to reduce my Revlimid as my blood counts got too low this past round and I had to cut the Revlimid short and miss a Velcade treatment.

There is a study at Cornell for Decadron, Biaxin (clarithromycin) and pomalidomide. I spoke to someone there and they are still recruiting participants. I don't see anything that would exclude me except that my blood counts are too low right now. Give me a couple weeks and those should be back up.

Since these are all oral drugs, I'm hoping that I would be able to do this from home with trips there for follow-ups, etc. once a month. Hopefully someone will get back to me shortly.

Janet

[Jade77]

Re: Looking for new treatment

by Jade77 on Sun Jun 26, 2011 2:47 pm

Hi Janet,

I came upon your post and I'm wondering how you're doing. My husband has had similar treatments and responces. He has Kappa light chain myeloma for 3 years and has had Rev, thalidomide, Velcade, cytoxin, etoposide, lots of dex, and recently an auto transplant. His kappas are starting to go up again. Did you ever find a clincal trial?

Hope you are well,
Jade

[Pamela Lussier]

Re: Looking for new treatment

by Pamela Lussier on Thu Jun 30, 2011 9:40 pm

Hi Janet,

I am sorry to hear about your difficult situation. Maybe this is obvious, but don't forget that there are many things you can do with diet and lifestyle changes that might help pass the time while waiting for answers and make you feel a little more in control.

Good luck finding the treatment you need,

Pam

[Mbutler]

Re: Looking for new treatment

by Mbutler on Mon Aug 01, 2011 6:17 am

Janet,

I read your post & I wanted to tell you that I Recently saw that clinical trials have been under way at MD Anderson for Curcumin it is an antioxidant immune supporting supplement known to repair cell damage & aid in brain health. I started taking it in 2/2011 & have seen positive results with my light chain myeloma. Mine is kappa & lambda lite free & it has helped my counts drop &maintain for almost 6mths & I took 500mg one time every other day. I am increasing to one everyday then after a week to two 500mg capsules daily as it helps me feel better, think clearer, & I just started taking Revlimid 10mg daily on 6/18/11, it really makes me tired, low energy, upset stomach & constipation but with Curcumin daily I am feeling better, riding my bike now which I just got too worn out before. I also known a person with the same deletion 13 as me & lambda lite chain myeloma she takes 750mg daily of curcumin & one cup of Flor-Essence tea & her #s have been untraceable for 9 mths. She isn't on anything else except Vitamind3 which u need for your bones & it's helps your immune system. Please get some curcumin all trials show it helps any side effects from chemo drugs or rev/dex/cytoxan. About 1% can get diarrhea but just start at 1 capsule a day then increase to 2 daily. Heres a link for you to see the info yourself. I'm praying for you to check this out, buy some, take everyday & i pray for your rapid response & healing. Another thing I'm just starting to try is visual therapy where I think of my good cells & the curcumin catching all the myeloma cells & taking them over & repairing them & any that are too damaged are killed & absorbed to make the good cells & immune system stronger & heal from head to toe starting with the bone marrow & thru out the whole body. I believe if you believe it is happening you can make it happen. So positive health thoughts too you & you will attract more positive around you.

Take care & God Bless you & yours.

[grammie1551]

Re: Looking for new treatment

by grammie1551 on Wed Nov 09, 2011 2:27 pm

JANET, MY HUSBAND IS AN M D ANDERSON PATIENT WITH MULTIPLE MYELOMA. HE WAS TOLD BY HIS DOCTOR, (6-B) THAT HE NEEDS TO CONSIDER THIS NEW PROTOCOL. THE SIDE EFFECT SCARE THE SNOT OUT OF HIM. LOOKS LIKE IF 1 MED DOESN'T GET YOU THE OTHE WILL. I DON'T KNOW WHY YOU HAVE TO WAIT FOR YOUR REGULAR ONC TO GET BACK, WHY DON'T YOU TRY TO HOOK UP WITH DR SHEBA THOMAS, SHE IS THE ONE IN CHARGE OF THIS STUDY ANYWAY. I UNDERSTAND THIS PROTOCOL STARTS IN DECEMBER. GOOD LUCK.

[asl.txchapter]

Re: Looking for new treatment

by asl.txchapter on Tue Mar 06, 2012 11:49 pm

I am glad to come across this forum. I am currently searching for any and all information regarding multiple myeloma and new treatments for it. I was diagnosed with multiple myeloma in 2008 after a lesion in the hip joint was discovered. I was lucky to catch it in the early stage and have since been fortunate to "keep it away" after treatment.

This forum is very informational as we all know that the possibility of a recurrance is quite high. Thank you to everyone for the good information that is posted here.