Anyone else on Morab 4 phase II clinical trial? End of trial for me
SharonVegas
Posts: 189
Joined: Feb 2012
Aug 10, 2012 - 9:53 pm
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
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
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
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.
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..........
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 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.
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.
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
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.
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.....
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.
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
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
I get cold sores....oncologist and nurse always really concerned about them, apparently they can lead to serious infection. They tell me to use some kind of antibiotic cream on them...like polysporin. So, take care of those, but I am sure your team has told you already. Thank you so much for the updates!!! I'm really interested to see how your scans go, please keep us posted :)
Finished treatment 7 on Tuesday. Some hot flashes after and insomina that night. Scan scheduled for Oct 1st. I feel great. Not much else to say. The scan will tell if it's all in my mind or in the drug :-)
Be well,
SharonVegas
I guess your starting to get really curious with the upcoming scan....it's probably the kinda feeling I want to see if this is working, but with the anxiety of what's the scan gonna show. Thank you so much for keeping us updated, it is very intersting. Hopefully it's kicking cancers butt. Hoping for wonderful scan results for you from this trial :)
Thanks Smokey. Yes I am getting curious and I will have anxiety the day before the scan, I always do even when I try to talk myself down. Thanks for your support and have a great weekend!
Did round 8 on Tuesday. Feel great. Have scan Monday. Am anxious and excited to see results. If no progression, I will stay on trial. Still having hot flashes but not as many. Am always very tired day 6 & 7 after treatment.
Read in paper today that docs at Georgetown Comp Cancer Center were successful at taking a biopsy of a man's cancer and growing mini tumors in the lab which they figured out a way to treat him with. They treated the mini tumors with different types of chemo to figure out which worked. Amazing.
Look for exciting post next Tuesday :-)
Ron of SharonVegas
Met with onc today. CT scan from yesterday shows pelvic lesion shrank a bit but peritoneal lesion grew and CEA is rising. Technically, I am a candidate to stay on trial drug but after discussing with onc, we agreed we all think I would have better results trying Zaltrap, 5FU, & Irinotecan. It's the newest cocktail in my chemo cabinet.
So I bid farewell to the trial. I'm glad I did the trial. It was a nice quality of life for two months and now on to something new.
Thanks all for your support and for listening to my trial experience.
My best,
Ron of ShaRonVegas
Thanks Ron for informing us about this trial.....I don't know what Zaltrap is like, but I sure wish I could stay on 5 fu & irinotecan forever.
It isn't bad for me, but, for some i think diarrhea needs controlled. Good luck with the new one.
Thanks so much for all your posts about this trial. It is so interesting and important for others who may be doing this trial or taking the drug after FDA approval.
Good luck as you switch to the new cocktail. That is one waiting in my 'backup plan' list!
Thanks so much for keeping us informed about the trial drug...it seems promising as it did have an affect on your tumors. Good luck with your next treatments :)
Joined: Apr 2011
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.
Joined: Feb 2011
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 :)
Joined: Feb 2012
I PM'd back. I hope :-)
I PM'd back. I hope :-)
Joined: Feb 2012
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
Joined: Feb 2012
found website
http://www.cancer.gov/clinicaltrials/search/view/print?cdrid=723325&version=HealthProfessional&protocolsearchid=10657234
Joined: Feb 2012
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
Joined: Feb 2011
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.
Joined: Feb 2012
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.
Joined: Feb 2012
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..........
Joined: May 2011
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
Joined: Feb 2011
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?
Joined: Feb 2012
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.
Joined: Feb 2012
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.
Joined: Feb 2012
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
Joined: Dec 2010
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.
Joined: Feb 2012
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.....
Joined: Apr 2004
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
Joined: Feb 2012
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
Joined: Apr 2011
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.
Joined: Feb 2012
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
Joined: Feb 2011
I get cold
I get cold sores....oncologist and nurse always really concerned about them, apparently they can lead to serious infection. They tell me to use some kind of antibiotic cream on them...like polysporin. So, take care of those, but I am sure your team has told you already. Thank you so much for the updates!!! I'm really interested to see how your scans go, please keep us posted :)
Joined: Feb 2012
Finished treatment 7 on
Finished treatment 7 on Tuesday. Some hot flashes after and insomina that night. Scan scheduled for Oct 1st. I feel great. Not much else to say. The scan will tell if it's all in my mind or in the drug :-)
Be well,
SharonVegas
Joined: Feb 2011
I guess your starting to get
I guess your starting to get really curious with the upcoming scan....it's probably the kinda feeling I want to see if this is working, but with the anxiety of what's the scan gonna show. Thank you so much for keeping us updated, it is very intersting. Hopefully it's kicking cancers butt. Hoping for wonderful scan results for you from this trial :)
Joined: Feb 2012
Thanks Smokey. Yes I am
Thanks Smokey. Yes I am getting curious and I will have anxiety the day before the scan, I always do even when I try to talk myself down. Thanks for your support and have a great weekend!
Joined: Feb 2012
Did round 8 on Tuesday.
Did round 8 on Tuesday. Feel great. Have scan Monday. Am anxious and excited to see results. If no progression, I will stay on trial. Still having hot flashes but not as many. Am always very tired day 6 & 7 after treatment.
Read in paper today that docs at Georgetown Comp Cancer Center were successful at taking a biopsy of a man's cancer and growing mini tumors in the lab which they figured out a way to treat him with. They treated the mini tumors with different types of chemo to figure out which worked. Amazing.
Look for exciting post next Tuesday :-)
Ron of SharonVegas
Joined: Feb 2012
Met with onc today. CT scan
Met with onc today. CT scan from yesterday shows pelvic lesion shrank a bit but peritoneal lesion grew and CEA is rising. Technically, I am a candidate to stay on trial drug but after discussing with onc, we agreed we all think I would have better results trying Zaltrap, 5FU, & Irinotecan. It's the newest cocktail in my chemo cabinet.
So I bid farewell to the trial. I'm glad I did the trial. It was a nice quality of life for two months and now on to something new.
Thanks all for your support and for listening to my trial experience.
My best,
Ron of ShaRonVegas
Joined: Apr 2011
Thanks Ron for informing us
Thanks Ron for informing us about this trial.....I don't know what Zaltrap is like, but I sure wish I could stay on 5 fu & irinotecan forever.
It isn't bad for me, but, for some i think diarrhea needs controlled. Good luck with the new one.
Joined: Aug 2003
thanks and best wishes
Thanks so much for all your posts about this trial. It is so interesting and important for others who may be doing this trial or taking the drug after FDA approval.
Good luck as you switch to the new cocktail. That is one waiting in my 'backup plan' list!
Best wishes
Tara
Joined: Feb 2011
Thanks so much for keeping
Thanks so much for keeping us informed about the trial drug...it seems promising as it did have an affect on your tumors. Good luck with your next treatments :)