clinical trials for esophageal cancers

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clinical trials for esophageal cancers

by flaminjava13 on Sat May 23, 2015 01:16 PM

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anyone on a clinical trial for esophageal cancer ? how are you doing??

RE: clinical trials for esophageal cancers

by Knote33 on Thu Jun 04, 2015 07:32 AM

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Hi,

my dad did 2 rounds of chemo and they failed to work.. he had a T1 "best case scenario tumor" in the GE junction of his esop-- they chemo and radiated him just to be safe-- 4 most later on his CT F/U everyone was SHOCKED it was now stage IV (am I bias that i think the chemo and radiation caused it... yes.. I work in heathcare and I see it happen dozens of time daily, you start to get suspicious.) he tried 2 different chemo regimens and they failed to work.. then we went home to die and live out the rest of his days. When we got sucked into a clinical trial at Dana Farber... It's like dealing with a car salesman... They make it sound so promising. He did nivolumab and ipilimumab. he thought his quality of life sucked before that.. well he would give anything to go back there now. The clinical trial is called PD1 drugs they ramp up your immune system so your own body attacks the cancer... however they are trying to figure out how much to give. so what ends up happening is your body attacks eithers your thyroid lungs or colon.. my dad got the thyroid one... giving him extreme graves disease.. overactive thyroid.. he was in the hospital for weeks trying to get levels down.. and then they killed it he was so underactive he went weeks without leaving the couch he was so exhausted! fixing an underactive thyroid takes weeks because of the half life of synthroid... and not to mension is you had an esopojectomy, you dont absorb much of the medications you take anyways so it takes even longer... his TSH and T4 are finally nornamalizing but it took about 3 months... and he really didnt have that time to spare. he has had 3 surgeries from the clinical trials side effects and the treatment did not work. However the person with gastric cancer who took 1 infusion of the stuff worked on... my dad took 3... and it basically killed him.. but you sign up to take 4... but depending on side effects they say you can keep going or not... so if you do it... after one infusion pretend you have side effects! that stuff is heavy duty on the body. But he felt fine after 1 dose. if you can get into a nivoluamb only great... but the ipiluamab is brutal. Personally and Professonially, live out your days. I am a palliative care nurse so I am bias... but I see what these treatments do for people.. you try and prolong your life. but now you have no life and are just alive.

RE: clinical trials for esophageal cancers

by flaminjava13 on Thu Jun 04, 2015 01:36 PM

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thank you for your reply found out we didnt qualify for the clinical trial we are doing more chemo and hoping it will work  just had a liver biopsy  and waiting on results from that as well  sorry your dad had to endure all of that i figured a cinical trial would be scary i hope you guys kick cancers rear end  hang in there we are trying to do the same ..

RE: clinical trials for esophageal cancers

by steveb50 on Tue Oct 06, 2015 12:01 PM

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On Jun 04, 2015 7:32 AM Knote33 wrote:

Hi,

my dad did 2 rounds of chemo and they failed to work.. he had a T1 "best case scenario tumor" in the GE junction of his esop-- they chemo and radiated him just to be safe-- 4 most later on his CT F/U everyone was SHOCKED it was now stage IV (am I bias that i think the chemo and radiation caused it... yes.. I work in heathcare and I see it happen dozens of time daily, you start to get suspicious.) he tried 2 different chemo regimens and they failed to work.. then we went home to die and live out the rest of his days. When we got sucked into a clinical trial at Dana Farber... It's like dealing with a car salesman... They make it sound so promising. He did nivolumab and ipilimumab. he thought his quality of life sucked before that.. well he would give anything to go back there now. The clinical trial is called PD1 drugs they ramp up your immune system so your own body attacks the cancer... however they are trying to figure out how much to give. so what ends up happening is your body attacks eithers your thyroid lungs or colon.. my dad got the thyroid one... giving him extreme graves disease.. overactive thyroid.. he was in the hospital for weeks trying to get levels down.. and then they killed it he was so underactive he went weeks without leaving the couch he was so exhausted! fixing an underactive thyroid takes weeks because of the half life of synthroid... and not to mension is you had an esopojectomy, you dont absorb much of the medications you take anyways so it takes even longer... his TSH and T4 are finally nornamalizing but it took about 3 months... and he really didnt have that time to spare. he has had 3 surgeries from the clinical trials side effects and the treatment did not work. However the person with gastric cancer who took 1 infusion of the stuff worked on... my dad took 3... and it basically killed him.. but you sign up to take 4... but depending on side effects they say you can keep going or not... so if you do it... after one infusion pretend you have side effects! that stuff is heavy duty on the body. But he felt fine after 1 dose. if you can get into a nivoluamb only great... but the ipiluamab is brutal. Personally and Professonially, live out your days. I am a palliative care nurse so I am bias... but I see what these treatments do for people.. you try and prolong your life. but now you have no life and are just alive.

Hi Knote33,

My husband is being treated at Dana Farber as well. He is waiting to hear if he is PD-L1 positive inorder to participate in the pembrolizumab trial. What phase was the trial your dad participated in? I think we met with a Dr. who described the side effects you have described in a different phase 1 trial. I see advertisements on tv for nivolumab(opdivo) to prolong life for lung cancer patients. Any info will be very appreciated.

Thanks and wishing you and your family the best,

Tracy B.

RE: clinical trials for esophageal cancers

by eternalife on Tue Oct 06, 2015 02:08 PM

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Hi Knote 33,

I hear you I worked with palliative care nurses and they said the same thing.... the chemo does very little for the patient , the caregivers have false hope and there is no real recovery. it's just downhill.

The health care system should man up and tell the right people the right story.

RE: clinical trials for esophageal cancers

by Chucksan on Sat Oct 31, 2015 06:17 AM

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My wife found she has lung cancer in Jun 2012 and had a definitive diagnosis in Aug 2012 of stage 4, squamous NSCLC lung cancer, with tumor in lung and mets to spine and rib. After a few months on several platin/gemzar combos of chemo she had no improvement.  She was given three more drug options that seemed to offer slim hope.  Our lung cancer specialist including a second one both thought that the phase III of BMS 936558/nivolumab/Opdivo might be her best hope based on incouraging results from phase I and II.  She started on Nivolumab in Jan 2013 when we figured she had little time left.  She is still on it currently as a prescription now only every 4 weeks (FDA approved in Mar 2015).  The clinical trail did not turn out to make her into a guinea pig but fortunately a huge success story.  Not all patients, in fact only about 25-40% or so realize improved response but that is much better than previous standard chemo's.  Her very strong pain before this trial drug (180mg of Oxycontin per day) was down in 4 days and completely gone in several weeks.  The large tumor is now stable and about 15% of the original size.  Her side effects were much more mild than those on the chemo.  It hasn't been all a piece of cake but she now feels very well and is in her 39th month of survival versus the 8 months she was told in Aug 2012.

I only post this to let you know there is hope and it seems for stage 4 patients to many times be in the new immunology drugs (also called checkpoint inhibitors and PD-1/PD-1L) like Nivolumab/Opdivo, Pembrolizumab/Keytruda, plus similar drugs being tested by other pharmeceutical firms.  Nivloumab originally for Melanoma is now approved for squamous and non-squamous lung cancer and is now found to be helpful and is being tested for liver and other cancers.  There is no magic bullet for most cancers but in my 3.5 years of research as a 24hr care giver and many hundreds of hours of online study, clinical trail drugs are sometimes the leading edge of improved response.  If I had stage 3 or 4 esophageal cancer I would be treated at a cancer clinic/oncologist that had access to the latest clinic trial and targeted drugs (as well as surgery or radiation if warranted). This is usually one of the largest cancer centers in a large metro city.  I would be suspicious of any doctor who did not have such access who told you that you did not quality for the trial (check to be sure).

I'm truly sorry for those that clinical trial drugs were not successful but many of these drugs seem to have better results than many of the conventional chemo drugs.

     

RE: clinical trials for esophageal cancers

by Chucksan on Sat Oct 31, 2015 07:21 AM

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On May 23, 2015 1:16 PM flaminjava13 wrote:

anyone on a clinical trial for esophageal cancer ? how are you doing??

Thought you might be intersted in this info on esophageal cancer and clinical trials.

http://www.cancerresearch.org/cancer-immunotherapy/impacting

RE: clinical trials for esophageal cancers

by steveb50 on Sat Oct 31, 2015 09:10 PM

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Thanks for the info! Steve started the trial for pembrolizumab a week ago. The infusion is every 3 wks. No noticeable side effects.

Best to all!

Tracy B.

RE: clinical trials for esophageal cancers

by angeleem on Tue Dec 20, 2016 09:52 PM

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On Oct 31, 2015 9:10 PM steveb50 wrote:

Thanks for the info! Steve started the trial for pembrolizumab a week ago. The infusion is every 3 wks. No noticeable side effects.

Best to all!

Tracy B.

How is the pembro going at this point? My Dad had his first infusion of pembro on Friday and has been super wiped out with no desire to eat since (today is Tuesday so been 4 days). I am wondering if this is normal and what to expect...and when this should subside. Thank you for sharing!

RE: clinical trials for esophageal cancers

by steveb50 on Thu Dec 22, 2016 03:13 PM

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On Dec 20, 2016 9:52 PM angeleem wrote:

On Oct 31, 2015 9:10 PM steveb50 wrote:

Thanks for the info! Steve started the trial for pembrolizumab a week ago. The infusion is every 3 wks. No noticeable side effects.

Best to all!

Tracy B.

How is the pembro going at this point? My Dad had his first infusion of pembro on Friday and has been super wiped out with no desire to eat since (today is Tuesday so been 4 days). I am wondering if this is normal and what to expect...and when this should subside. Thank you for sharing!

According to my research and experience, about 20% of patients are having a partial response and have progression free survival at the year mark so far. 

My husband has not had any eating issues and has experienced minor fatigue. I suggest you call your provider if you have concerns especially about the lack of appetite. Was your husband experiencing these symptoms before the infusion? 

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