Good Info to Have When Considering Clinical Trials
The following is an article that appeared in the newsletter I receive from my local hospital--Northside. It discusses the purpose for clinical trials, with which I think we are already familiar. However, I thought the suggested questions to ask if someone is considering a clinical trial were good and worth sharing.
Testing 123
Curious about clinical trials?
Clinical trials are designed to test the safety and effectiveness of new or existing medications and technologies in preventing, detecting and treating disease. They are also performed to determine how certain modes of treatment can help improve the quality of life for patients living with a chronic illness.
Clinical trials are essential in the advancement of medical treatments and technologies. Without clinical trials, treatment options remain very limited and possibility of a cure is unlikely.
Why participate in a clinical trial?
Deciding whether to participate in a clinical trial is different for everyone. You may choose to participate in a clinical trial solely to help others in the future and aid in medical advancements. Or like many participants, you may decide to volunteer so that you have access to new treatments and technologies that are still being tested and not yet available for widespread use.
Only about 3 to 4 percent of cancer patients participate in clinical trials. This low participation rate is partly attributed to the fact that most cancer patients simply don’t have access. At Northside, we offer the latest in procedures, technologies and treatments through our vast participation in national clinical trials. With locations throughout Georgia, patients can conveniently access clinical trials close to home.
In addition to oncology, our patients have the opportunity to participate in clinical trials for cardiology, vascular surgery, endocrinology, pulmonology and rheumatology.
What are the risks?
No clinical trial is completely without risk, and if you wish to participate, you should understand the possibility of unpleasant and serious side effects. However, if you have a rare disease, clinical trials also have the potential of benefit, although benefit cannot be guaranteed. If you are interest in participating in a clinical trial, always discuss it with your doctor first.
Key questions to ask
Before volunteering for a clinical trial, be sure to keep yourself informed about the study, its purpose and any possible challenges you may face along the way.
Ask:
**What is the main purpose of the study?
**Does the study involve a placebo or a treatment that is already on the market?
**How will the treatment be given to me?
**How long is the study going to last and what will I be asked to do?
**What has been learned about the study treatment and are any results published?
**Do I have to pay for any part of the study?
**Will my insurance cover these costs?
**Is there reimbursement for travel?
**Will I be able to see my own doctor?
**If the treatment works for me, can I keep using it after the study?
**Can anyone find out whether I’m participating in a clinical trial?
**What will happen to my medical care if I stop participating in the study?
**Does the physician/investigator have any financial or special interest in the study?
**Will I receive any follow-up care after the study has ended?
**What are the credentials and research experience of the physician and staff?
Comments
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Where do you live in Georgia?
I remember you said you live in the south but didn't realize you were in Georgia or am I assuming because of your link?
I was raised in Aiken, SC just across the Savannah river from Augusta, Georgia which most people know (especially golfers) because of the Master's Golf Tournament there.
My mother was born in Augusta. My Aunt lives in an Atlanta Suburb.
Just curious. The best blues, in my opinion, is GEORGIA blues!
Fondly,
Sandy
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Hi Sandy!sandysp said:Where do you live in Georgia?
I remember you said you live in the south but didn't realize you were in Georgia or am I assuming because of your link?
I was raised in Aiken, SC just across the Savannah river from Augusta, Georgia which most people know (especially golfers) because of the Master's Golf Tournament there.
My mother was born in Augusta. My Aunt lives in an Atlanta Suburb.
Just curious. The best blues, in my opinion, is GEORGIA blues!
Fondly,
Sandy
Yes, I live in Georgia about 25 miles north of the north side of Atlanta, near Lake Lanier, if you know where that is. I agree, Georgia has some fine blues, along with some awesome barbecue! I'm not that much into golf, but the Masters is a very big deal down here every year. We love our Georgia Bulldogs football and NASCAR. I grew up in the north, but have lived here for 15 years now, spending a lot of time prior to that living in the south off and on. I am definitely a Southern gal now!
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NASCARmp327 said:Hi Sandy!
Yes, I live in Georgia about 25 miles north of the north side of Atlanta, near Lake Lanier, if you know where that is. I agree, Georgia has some fine blues, along with some awesome barbecue! I'm not that much into golf, but the Masters is a very big deal down here every year. We love our Georgia Bulldogs football and NASCAR. I grew up in the north, but have lived here for 15 years now, spending a lot of time prior to that living in the south off and on. I am definitely a Southern gal now!
OH GOSH, yes, NASCAR. A rich part of southern history about running corn liquor to get away from the "revenuers" as the government was called. Ha, ha! My husband's Uncle is a NASCAR guy but not a bootlegger. I think I may have seen him race back in the day on the Augusta, Georgia track. His name is Gus Truelove. He was racing against Richard Petty and others and got very messed up in quite a few car wrecks. He is in his upper 80's or 90 by now and still quite the charmer and flirts with me whenever I see him.
I remember now you told me you were from there but I forgot. I don't know where that lake is but it is really nice to live near water. You are a very sweet southern girl. They are lucky to have you in Georgia.
Fondly,
Sandy
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Sandysandysp said:NASCAR
OH GOSH, yes, NASCAR. A rich part of southern history about running corn liquor to get away from the "revenuers" as the government was called. Ha, ha! My husband's Uncle is a NASCAR guy but not a bootlegger. I think I may have seen him race back in the day on the Augusta, Georgia track. His name is Gus Truelove. He was racing against Richard Petty and others and got very messed up in quite a few car wrecks. He is in his upper 80's or 90 by now and still quite the charmer and flirts with me whenever I see him.
I remember now you told me you were from there but I forgot. I don't know where that lake is but it is really nice to live near water. You are a very sweet southern girl. They are lucky to have you in Georgia.
Fondly,
Sandy
You are so sweet, but I think I'm the lucky one to have Georgia! It would take a court order to make me move back up north, where I would have to endure winter weather every year! Granted, last year our winter here was pretty bad by Georgia standards, but hopefully we have paid our dues for awhile! The older I get, the less I like cold weather, and I'm certainly not a fan of snow!
I hope you have a good week, my sweet friend! Hugs!
Martha
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Clinical trials for stage IV ACmp327 said:Sandy
You are so sweet, but I think I'm the lucky one to have Georgia! It would take a court order to make me move back up north, where I would have to endure winter weather every year! Granted, last year our winter here was pretty bad by Georgia standards, but hopefully we have paid our dues for awhile! The older I get, the less I like cold weather, and I'm certainly not a fan of snow!
I hope you have a good week, my sweet friend! Hugs!
Martha
Hi Martha - I have an app't today w/my oncologist. My path showed AC/basaloid squamous cell ca in the nodule & a few nodes in my lung. Lots of nodes were negative. I had a segment of my RUL & mediastinal nodes removed. I am doing fabulous!
I have been searching the web for immunoltherapy clinical trials for me. Have not had any luck.
Have a feeling my oncologist is going to plan cisplatin & 5FU. Cannot find any stats on that success. I just know that this type of ca in the lungs is very bad! Maybe the surgeon got it all...lol!
Thank you!
Nic
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Nicnicotianna said:Clinical trials for stage IV AC
Hi Martha - I have an app't today w/my oncologist. My path showed AC/basaloid squamous cell ca in the nodule & a few nodes in my lung. Lots of nodes were negative. I had a segment of my RUL & mediastinal nodes removed. I am doing fabulous!
I have been searching the web for immunoltherapy clinical trials for me. Have not had any luck.
Have a feeling my oncologist is going to plan cisplatin & 5FU. Cannot find any stats on that success. I just know that this type of ca in the lungs is very bad! Maybe the surgeon got it all...lol!
Thank you!
Nic
Thanks for the update. I'm glad to hear you are doing well! I hope your doc has a plan for your treatment today and that you can get started asap. Please keep us posted. I will keep you in my thoughts and prayers.
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Nicnicotianna said:Clinical trials for stage IV AC
Hi Martha - I have an app't today w/my oncologist. My path showed AC/basaloid squamous cell ca in the nodule & a few nodes in my lung. Lots of nodes were negative. I had a segment of my RUL & mediastinal nodes removed. I am doing fabulous!
I have been searching the web for immunoltherapy clinical trials for me. Have not had any luck.
Have a feeling my oncologist is going to plan cisplatin & 5FU. Cannot find any stats on that success. I just know that this type of ca in the lungs is very bad! Maybe the surgeon got it all...lol!
Thank you!
Nic
When my cancer met to Liver....as I mentioned before, I had ciplatin and 5FU. I mentioned to my oncologist this time around...if it is back in lungs, would he contact Dr. Cathy Eng in Houston and discuss my case with her and see what chemo may work better. I know on another cancer site some patients used other chemos. One was stage 4 and she has been clean for over 5 years, Martha may be familiar with the chemos I talking about....can't remember the names right now.
I pray for everyone on this forum daily. So glad you are doing so well after surgery.
Yes, we need to build up our immune system. Don't know how to do it either. I will look too on the internet.
Sending Blessings of healing.
tory
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Immunotherapyknolltop said:Nic
When my cancer met to Liver....as I mentioned before, I had ciplatin and 5FU. I mentioned to my oncologist this time around...if it is back in lungs, would he contact Dr. Cathy Eng in Houston and discuss my case with her and see what chemo may work better. I know on another cancer site some patients used other chemos. One was stage 4 and she has been clean for over 5 years, Martha may be familiar with the chemos I talking about....can't remember the names right now.
I pray for everyone on this forum daily. So glad you are doing so well after surgery.
Yes, we need to build up our immune system. Don't know how to do it either. I will look too on the internet.
Sending Blessings of healing.
tory
Tory -
Thanks for your prayers.
My oncologist wants a repeat PET in Oct. Then we will go the chemo route if need be. She did not want to do chemo now. I think she said there is no precedent or literature to support it at this time. Frankly I am not ready for it.
An immunotherapy clinical trial was suggested to me by a relative. My oncologist said that we could look into that. She said that that there are few clinical trials out there for anal cancer & that it would be a Phase I because of that. I need to find out what Phase I means.
A friend told me mushrooms are good for the immune system. I am doing some research on that & will report later.
Will keep in touch!
Nic
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nicnicotianna said:Immunotherapy
Tory -
Thanks for your prayers.
My oncologist wants a repeat PET in Oct. Then we will go the chemo route if need be. She did not want to do chemo now. I think she said there is no precedent or literature to support it at this time. Frankly I am not ready for it.
An immunotherapy clinical trial was suggested to me by a relative. My oncologist said that we could look into that. She said that that there are few clinical trials out there for anal cancer & that it would be a Phase I because of that. I need to find out what Phase I means.
A friend told me mushrooms are good for the immune system. I am doing some research on that & will report later.
Will keep in touch!
Nic
I'm not sure what chemos your doctor might suggest beyond the standard cisplatin and 5fu. I'm trying to think of someone I have communicated with in the past who had lung mets to see what they received. If I run across anything, I'll let you know. Clinical trials can be checked out on the National Cancer Institutes Website. I've pasted in their address.
As for mushrooms and their effect on our immune system, there are reported benefits. I have most often heard of shitake mushrooms having this immune system boosting effect. However, the page below lists a couple more--reishi and maitake. I'm not familiar with those. I don't believe that common white button mushrooms have the same powers. Check out the website and others on the internet, as there seems to be lots of information, including that of Dr. Andrew Weil.
http://blog.doctoroz.com/oz-experts/3-mushrooms-and-their-big-immunity-benefits
Please keep us posted and I'll keep you in my prayers.
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mushoomsmp327 said:nic
I'm not sure what chemos your doctor might suggest beyond the standard cisplatin and 5fu. I'm trying to think of someone I have communicated with in the past who had lung mets to see what they received. If I run across anything, I'll let you know. Clinical trials can be checked out on the National Cancer Institutes Website. I've pasted in their address.
As for mushrooms and their effect on our immune system, there are reported benefits. I have most often heard of shitake mushrooms having this immune system boosting effect. However, the page below lists a couple more--reishi and maitake. I'm not familiar with those. I don't believe that common white button mushrooms have the same powers. Check out the website and others on the internet, as there seems to be lots of information, including that of Dr. Andrew Weil.
http://blog.doctoroz.com/oz-experts/3-mushrooms-and-their-big-immunity-benefits
Please keep us posted and I'll keep you in my prayers.
Thanks Martha for the prayers & references.
I think my oncologist would prescribe the standard cisplatin & 5fu.
I will keep in touch.
Nic
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nicotianna.....nicotianna said:mushooms
Thanks Martha for the prayers & references.
I think my oncologist would prescribe the standard cisplatin & 5fu.
I will keep in touch.
Nic
Hi, while I'm no expert I too have heard many good health benefits of shitake mushrooms. My iron levels were very low after treatment and someone had suggested adding them in my diet. While I do take an iron supplement now I also try to incorporate shitake mushrooms at least a couple times a week and iron levels have been great for quite a while now.
Also, I understand that clinical trials for immunotherapy may differ but of interest I was on a clinical trial when initially diagnosed with Stage 3b anal ca in Jan. 2011.
The trial included standard treatment of cisplatin/5FU, radiation, (and I had a colostomy due to tumor size and location) along with the trial drug "Cetuximab." Unfortunately I was only given the first few doses of this drug as after a few weeks had complications with my ostomy from radiation and had to go off the trial. I am still followed per trial guidelines and doing great today!
I wish you all the best and will keep you in my thoughts and prayers for healing.
katheryn
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This news is not welcomed news so but glad you sharednicotianna said:Immunotherapy
Tory -
Thanks for your prayers.
My oncologist wants a repeat PET in Oct. Then we will go the chemo route if need be. She did not want to do chemo now. I think she said there is no precedent or literature to support it at this time. Frankly I am not ready for it.
An immunotherapy clinical trial was suggested to me by a relative. My oncologist said that we could look into that. She said that that there are few clinical trials out there for anal cancer & that it would be a Phase I because of that. I need to find out what Phase I means.
A friend told me mushrooms are good for the immune system. I am doing some research on that & will report later.
Will keep in touch!
Nic
Whole Foods has mixed mushrooms in their Frozen Foods sections that are of many varieties some I had never heard of. They are delicious too. Flash frozen is not a bad way to go. It's really hard to find some of these varieties fresh.
Just a thought.
I really like the immunotherapy concept. My Oncologist in Seattle said years ago cancer treatment was in the wrong direction entirely and it took the AIDS community to bring this to the forefront. He said the Immune System was key. Our own bodies our best defence if we could learn to shore it up. He was a great soul recommended by the author Bernie Siegel in the back of his book. The Feds harrassed him with charges because he imported from Germany B vitamins for injection that did not have perservatives. He said the systems of his AIDS patients were too fragile and the perservatives created an unhealthy response that rendered American B vitamins inadequte for his patients needs. But at that time, doctors weren't allowed to import products from Germany and probably still aren't. His patients raised money for his defense but it took its toll on him. I wish I could remember his name. He was wonderful to me.
Good luck. Stay close. We are all rooting for you with many prayers and much positive energy.
Fondly,
Sandy
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I was a patient at the
I was a patient at the national cancer institute/ NIH in one of their clinical trial studies and want to tell you that it was a wonderful experience. The care was and still is the best. I am one year post with stage 2 no node and no mets. If anyone is interested I will tell you about how it works. I feel so lucky for the great care I recieved and continue to recieve there.
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AZedjAZedj said:I was a patient at the
I was a patient at the national cancer institute/ NIH in one of their clinical trial studies and want to tell you that it was a wonderful experience. The care was and still is the best. I am one year post with stage 2 no node and no mets. If anyone is interested I will tell you about how it works. I feel so lucky for the great care I recieved and continue to recieve there.
Thanks for sharing about your experience at NIH. It's good to know that you received excellent care and even better to know that you are doing well! I wish you continued good health!
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EGFR & Cetuximabeihtak said:nicotianna.....
Hi, while I'm no expert I too have heard many good health benefits of shitake mushrooms. My iron levels were very low after treatment and someone had suggested adding them in my diet. While I do take an iron supplement now I also try to incorporate shitake mushrooms at least a couple times a week and iron levels have been great for quite a while now.
Also, I understand that clinical trials for immunotherapy may differ but of interest I was on a clinical trial when initially diagnosed with Stage 3b anal ca in Jan. 2011.
The trial included standard treatment of cisplatin/5FU, radiation, (and I had a colostomy due to tumor size and location) along with the trial drug "Cetuximab." Unfortunately I was only given the first few doses of this drug as after a few weeks had complications with my ostomy from radiation and had to go off the trial. I am still followed per trial guidelines and doing great today!
I wish you all the best and will keep you in my thoughts and prayers for healing.
katheryn
Hi Katheryn -
Thanks for the prayers & good wishes as well as the info.
Who is/was conducting the clinical trial for Cetuximab? Do you know if your pathology specimen was tested for EGFR before the trial was started?
I think that Cetuximab is considered to be immunotherapy. I am trying to learn more about this.
A research-oriented MD relative thought it would be a good idea to have my path specimen tested for EGFR. My path was not tested for EGFR (epidermal growth factor receptor). My oncologist said that this testing is not standard of care for anal cancer (only lung cancer) & that I would have to pay for it. I will pay.
Nic
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Immunotherapysandysp said:This news is not welcomed news so but glad you shared
Whole Foods has mixed mushrooms in their Frozen Foods sections that are of many varieties some I had never heard of. They are delicious too. Flash frozen is not a bad way to go. It's really hard to find some of these varieties fresh.
Just a thought.
I really like the immunotherapy concept. My Oncologist in Seattle said years ago cancer treatment was in the wrong direction entirely and it took the AIDS community to bring this to the forefront. He said the Immune System was key. Our own bodies our best defence if we could learn to shore it up. He was a great soul recommended by the author Bernie Siegel in the back of his book. The Feds harrassed him with charges because he imported from Germany B vitamins for injection that did not have perservatives. He said the systems of his AIDS patients were too fragile and the perservatives created an unhealthy response that rendered American B vitamins inadequte for his patients needs. But at that time, doctors weren't allowed to import products from Germany and probably still aren't. His patients raised money for his defense but it took its toll on him. I wish I could remember his name. He was wonderful to me.
Good luck. Stay close. We are all rooting for you with many prayers and much positive energy.
Fondly,
Sandy
Thanks Sandy! I will keep you up to date:)
Nic
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NIHAZedj said:I was a patient at the
I was a patient at the national cancer institute/ NIH in one of their clinical trial studies and want to tell you that it was a wonderful experience. The care was and still is the best. I am one year post with stage 2 no node and no mets. If anyone is interested I will tell you about how it works. I feel so lucky for the great care I recieved and continue to recieve there.
I am interested in your experience at NIH.......whenever you have the time.
Nic
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Butt what???mp327 said:nic
I'm not sure what chemos your doctor might suggest beyond the standard cisplatin and 5fu. I'm trying to think of someone I have communicated with in the past who had lung mets to see what they received. If I run across anything, I'll let you know. Clinical trials can be checked out on the National Cancer Institutes Website. I've pasted in their address.
As for mushrooms and their effect on our immune system, there are reported benefits. I have most often heard of shitake mushrooms having this immune system boosting effect. However, the page below lists a couple more--reishi and maitake. I'm not familiar with those. I don't believe that common white button mushrooms have the same powers. Check out the website and others on the internet, as there seems to be lots of information, including that of Dr. Andrew Weil.
http://blog.doctoroz.com/oz-experts/3-mushrooms-and-their-big-immunity-benefits
Please keep us posted and I'll keep you in my prayers.
Remember the lady who has a blog about her cancer. Can't remember to much, but I thought she mentioned either on her blog or other sites that MD Anderson was conductiing a trial for Anal CAncer. She also had cancer in lung but don't know if her chemo was traditional one.
Question....if anal cancer mets to other spots....do they treat the area with chemo that is for that area, for example lung, liver, bone or do they still treat it for anal cancer....5FU and cisplatin?
I think Taxol have been used in combination with another chemo too.
tory
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I was Dx with stage 2-3 anal
I was Dx with stage 2-3 anal cancer no node and no mets 4-2013 and medical friends found clinical trial at NIH. The trial was for a cream that they were hoping would help with the radiation burns. Concept was to save the skin. My MD and medical friends did the research on the chemical compounds in the cream and felt it was a safe bet if I could get into the clinical trial. The mitamycin and 5FU X2 rounds at the first week and week 5 along with 33 rounds of radiation were the standard of care for this type of cancer so nothing there was any different. I had to jump through many hoops to qualify because the restrictions on the trail are very specific. But after much testing I did qualify and received care that was very personalized due to the fact gathering that there were doing. I also volunteered for several other trials that will help others in our shoes by giving snags and blood on scheduled dates. NIH is the gold standard of care for cancer care in this country. My rad and med onc team are NCI people. I met many people along with lots of children with cancer doing trial studies. It is awesome to be cared for by the people who write the rules. Check out the trials studies at NIH.
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knolltopknolltop said:Butt what???
Remember the lady who has a blog about her cancer. Can't remember to much, but I thought she mentioned either on her blog or other sites that MD Anderson was conductiing a trial for Anal CAncer. She also had cancer in lung but don't know if her chemo was traditional one.
Question....if anal cancer mets to other spots....do they treat the area with chemo that is for that area, for example lung, liver, bone or do they still treat it for anal cancer....5FU and cisplatin?
I think Taxol have been used in combination with another chemo too.
tory
The woman you are referring to is Michele, a virtual friend of mine. The name of her blog is "I Have Butt What?" Her treatment has been done at MDA and yes, she has had mets to her lung(s). I believe she has had the lung nodule(s) "plucked" out (to use her word), and if memory serves me correctly, she has undergone some chemo and/or radiation for the lung met(s). If you do a Google search, you will find her blog. She is also a blogger on another site that I frequent and post on. Ironically, she and I have discovered that we have a mutual friend in real life, not virtually! It's a small world. Michele is very informed about this disease and is a nurse by profession. I admire her very much because she has spoken up about anal cancer in the public arena and has even written a book. She is a regular poster on the other site.
As for what chemo drugs are used to treat metastatic lung cancer, I'm not sure. I do believe you may be right about the Taxol. Perhaps Carboplatinum as well.
If you cannot find Michele's blog, please let me know. I'll do a search and if I can post a link, I will.
I just edited this post--here's the link. http://ihavebuttwhat.tumblr.com/
Martha
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