Anyone else on Morab 4 phase II clinical trial? End of trial for me

SharonVegas
SharonVegas Member Posts: 189
edited October 2012 in Colorectal Cancer #1
Hi All,
Is there anyone else out there who started the Morab 4 phase II clinical trial? Today was our first treatment. Trying to get in touch with anyone who is also on the trial so we can compare notes.
Best to all,
SharonVegas
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Comments

  • janie1
    janie1 Member Posts: 753 Member
    Havent heard of it.
    I sent

    Havent heard of it.
    I sent you a PM....if you dont mind looking at it and responding. I was dx'd about the same time.
    Thanks.
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    janie1 said:

    Havent heard of it.
    I sent

    Havent heard of it.
    I sent you a PM....if you dont mind looking at it and responding. I was dx'd about the same time.
    Thanks.

    I've never heard of it,
    I've never heard of it, please give details and anything you are experiencing, side effects, etc. on this trial :)
  • SharonVegas
    SharonVegas Member Posts: 189
    janie1 said:

    Havent heard of it.
    I sent

    Havent heard of it.
    I sent you a PM....if you dont mind looking at it and responding. I was dx'd about the same time.
    Thanks.

    I PM'd back. I hope :-)

    I PM'd back. I hope :-)
  • SharonVegas
    SharonVegas Member Posts: 189
    janie1 said:

    Havent heard of it.
    I sent

    Havent heard of it.
    I sent you a PM....if you dont mind looking at it and responding. I was dx'd about the same time.
    Thanks.

    Yesterday I Googled and
    Yesterday I Googled and found a list of 36 facilities in 16 states that were participating in the trial. Couldn't find it today. I'll keep looking and post when I find it. Here is an article:
    http://www.bizjournals.com/prnewswire/press_releases/2012/04/16/NY87117
  • SharonVegas
    SharonVegas Member Posts: 189
    Just trying to keep this
    Just trying to keep this post active in the hopes that someone on study will see it.
    Round two tomorrow. No unusual side effect so far. Insomnia first night and some hot flashes........of course that could have been from the mexican food too ;-)
    Going to ask for copies of our latest CT scan and blood work. CEA was down to 1 a few months back started at 33). Sometimes looking at all that stuff is exhausting so we took a break from requesting copies.
    Be well, SharonVegas
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member

    Just trying to keep this
    Just trying to keep this post active in the hopes that someone on study will see it.
    Round two tomorrow. No unusual side effect so far. Insomnia first night and some hot flashes........of course that could have been from the mexican food too ;-)
    Going to ask for copies of our latest CT scan and blood work. CEA was down to 1 a few months back started at 33). Sometimes looking at all that stuff is exhausting so we took a break from requesting copies.
    Be well, SharonVegas

    Looks interesting....my
    Looks interesting....my problem is I'm on blood thinners....that seems to rule out all of these monoclonal antibodies for me.
  • SharonVegas
    SharonVegas Member Posts: 189
    Ding Ding Round 2 today. I
    Ding Ding Round 2 today. I get Morab4 every week.
    My CEA rose to 31 on 8/9/12 from 13 on 7/10/12. Makes sense since I stopped receiving FolFiri + Cetuximab on 7/12/12. My cholesterol looks fabulous though.
    Only side effect is still hot flashes. The back of my shirt was soaked after chemo today. My temp was normal though. Wierd. I'm really tired the last two days.
  • SharonVegas
    SharonVegas Member Posts: 189
    Ok folks, I am beyond tired
    Ok folks, I am beyond tired these last few days. Feels like last year when I first started chemo with Folfox6+Avastin without all the nausea and icky stuff that went with that regime. I started taking this water pill Aldactone 50mg the same day I start Morab4 so not sure if that is wiping me out or if I got the real drug (vs placebo). The Morab drug is a monoclonal antibody like Avastin so keeping my fingers crossed that this works. Round 3 this Thursday..........
  • relaxoutdoors08
    relaxoutdoors08 Member Posts: 521 Member

    Ok folks, I am beyond tired
    Ok folks, I am beyond tired these last few days. Feels like last year when I first started chemo with Folfox6+Avastin without all the nausea and icky stuff that went with that regime. I started taking this water pill Aldactone 50mg the same day I start Morab4 so not sure if that is wiping me out or if I got the real drug (vs placebo). The Morab drug is a monoclonal antibody like Avastin so keeping my fingers crossed that this works. Round 3 this Thursday..........

    Thank you
    Thank you for your courage and sharing with us. Please continue to post and share your experience with the study. This post offers hope.
    NB
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member

    Thank you
    Thank you for your courage and sharing with us. Please continue to post and share your experience with the study. This post offers hope.
    NB

    When do they scan next to
    When do they scan next to see how this is working?? Just curious why are they giving you a water pill?? Thank you so much for updating us with the side effects. Besides the fatigue is it upsetting your tummy at all? How often do they give you the infusion?
  • SharonVegas
    SharonVegas Member Posts: 189
    Did round 3 Thursday. Had
    Did round 3 Thursday. Had hot flash on way home and then hot flashes all night. Thought I wet the bed! LOL! Felt great today and tonight, right side pain is gone again. Thought I'd share something with everyone since I just scanned through the responses in the "chemo or no chemo thread" and the debate about targeted therapy. This statement, and many other words, is in my consent packet "Morab-4 sticks to the surface of some cancer cells. In lab experiments, Morab4 causes white blood cells to attack cancer cells that have been coated with Morab4. It is not clear why this happens."
    In response to some of the comments on this thread, I don't know how brave I am, I just don't have a lot of choices since the other chemos have stopped working and this trail looks promising.
    I will have my first scan after 8 treatments. Treatments are once a week. So five more weeks until first scan.
    Until next week, fight the good fight everyone!
    SV
  • SharonVegas
    SharonVegas Member Posts: 189
    smokeyjoe said:

    When do they scan next to
    When do they scan next to see how this is working?? Just curious why are they giving you a water pill?? Thank you so much for updating us with the side effects. Besides the fatigue is it upsetting your tummy at all? How often do they give you the infusion?

    Smokey, I'm taking the water
    Smokey, I'm taking the water pill because I started having fluid build up in my abdomen from my peritoneal mets. The water pills helped from day one. No more pressure in my abdomen. No upset stomach, nothin. The infusion is once a week for 2-3 hours.
  • SharonVegas
    SharonVegas Member Posts: 189

    Thank you
    Thank you for your courage and sharing with us. Please continue to post and share your experience with the study. This post offers hope.
    NB

    Sometimes you think things
    Sometimes you think things won't get better, but they will. That was my thought today. Today, I felt the best I've felt in a long time. I wish you well.
  • have2believe
    have2believe Member Posts: 134

    Did round 3 Thursday. Had
    Did round 3 Thursday. Had hot flash on way home and then hot flashes all night. Thought I wet the bed! LOL! Felt great today and tonight, right side pain is gone again. Thought I'd share something with everyone since I just scanned through the responses in the "chemo or no chemo thread" and the debate about targeted therapy. This statement, and many other words, is in my consent packet "Morab-4 sticks to the surface of some cancer cells. In lab experiments, Morab4 causes white blood cells to attack cancer cells that have been coated with Morab4. It is not clear why this happens."
    In response to some of the comments on this thread, I don't know how brave I am, I just don't have a lot of choices since the other chemos have stopped working and this trail looks promising.
    I will have my first scan after 8 treatments. Treatments are once a week. So five more weeks until first scan.
    Until next week, fight the good fight everyone!
    SV

    so great to hear pain is gone
    I'm sorry you wet the bed, but I'm glad you can laugh about it. I think we all don't realize how strong or brave we are until we have no choice. I'm so happy to hear that the pain is gone. It's very encouraging. And it gives everyone hope that more options are on the horizon.
  • SharonVegas
    SharonVegas Member Posts: 189
    Did round 4 yesterday.
    Did round 4 yesterday. Tolerating this well other than insomnia night of chemo, lots of hot flashes and a cold sore on my lip. I've never had a cold sore in my life. The hot flashes cause me to sweat in bed not wet the bed. LOL! Once again, I felt really good today. Seems like I peak the day after chemo and then slowly the fatigue and low-level pain returns by the next session. I guess it's important to mention that I'm able to live a full life and work full time at my desk job. I haven't been able to exercise 5-6 days a week like I did three years ago but I do manage to do some form of low level cardio a couple of times per week. OK I'm rambling. That's my update for round 4.....
  • steved
    steved Member Posts: 834 Member

    Did round 4 yesterday.
    Did round 4 yesterday. Tolerating this well other than insomnia night of chemo, lots of hot flashes and a cold sore on my lip. I've never had a cold sore in my life. The hot flashes cause me to sweat in bed not wet the bed. LOL! Once again, I felt really good today. Seems like I peak the day after chemo and then slowly the fatigue and low-level pain returns by the next session. I guess it's important to mention that I'm able to live a full life and work full time at my desk job. I haven't been able to exercise 5-6 days a week like I did three years ago but I do manage to do some form of low level cardio a couple of times per week. OK I'm rambling. That's my update for round 4.....

    Thanks
    It is great to hear your progress. I guess the biggest question that always hits people in trials is whether they are getting active treatment or placebo- it sounds like you feel you are getting something active which is great and tolerating it well. Also great to hear that despite your cancer you are able to live life to a really high level as that truly is the most important factor of living with this illness.

    I look forward to your updates.

    Steve
  • SharonVegas
    SharonVegas Member Posts: 189
    Batter up Round 5
    Just finished round five. Doc says me feeling so well on Day 1 & 2 after treatment might be attributed to the pre-meds. I guess there is a low level steriod in the pre-meds that might reduce the inflamation in my entire body and therefore make me feel so great. Whatever. All I know is that I feel great for a few days and then I'm tired again. On another note, my pain is no where near the level it was when I first started. That's gotta be good right? Well I need a nap, long day at chemo.
    Be well,
    SV
  • janie1
    janie1 Member Posts: 753 Member

    Batter up Round 5
    Just finished round five. Doc says me feeling so well on Day 1 & 2 after treatment might be attributed to the pre-meds. I guess there is a low level steriod in the pre-meds that might reduce the inflamation in my entire body and therefore make me feel so great. Whatever. All I know is that I feel great for a few days and then I'm tired again. On another note, my pain is no where near the level it was when I first started. That's gotta be good right? Well I need a nap, long day at chemo.
    Be well,
    SV

    I love to hear that the pain
    I love to hear that the pain is much reduced. Naps are A-OK. Thanks for the update.
  • SharonVegas
    SharonVegas Member Posts: 189
    Round six pick up stix! Did
    Round six pick up stix! Did round six today. I'm feeling pretty good overall. Cold sore healed. A little tired and achey this past weekend but nothing I couldn't work through. Got a sty in my eye on Sunday. At least I think it's a sty. I'm having calf cramps almost every night. Still having hot flashes on a regular basis. Maybe it's man-o-pause? My wife threw a "somewhat surprise" 60th bithday party for me Saturday. Boy was it nice to see and talk to many of the good people I share my life with. Gave me that boost I needed. Will have scan after round 8. Looking forward to that.
    Be well all,
    SharonVegas