Iansmon new link

iansmom

Hi william, Tina and sherri,

Thanks for your guidence and help and your prayers. i think you have something there about young men and invincibilty. We raise them to be strong and tough/ so why am I not surprised that he is sitting in his room all day staring at the TV and waiting to take his next pain med. He hasn't really eated in almost 2 weeks and barely gets 2 cans in the J tube. He's been nauseas and vomiting but the anti emenics don't seem to help like they did. He was doing somewhat better 2 weeks ago. We had hoped that the CT scan last thursday was going to show that the cancer was slowed down if not gone. But the news was that there was some spread to the liver and spine. I wish I could blame this new spiral on the CT scan but he was like this before and i don't think it was anxiety.

I feel like the bad guy cause I am always trying to get him to "do" something. his father is home all day and tries to get him to go out. his brothers do too...but he just passes them off with feeling tired or sick.

My husband and I go to his doctors appointments with him and that is vital. They don't have to talk to us but they do. I don;t talk to them behind his back but I wish I would sometimes. Instead I talk right in front of him and i get reprimanded later but I don't care. There are no stupid questions.

As for the psych aspect he keeps putting it off. I am sure that you already knw that there are some really good websites for young adults and MGH and Dana Farber have support groups...he refused to go and never realy looked at the links i sent him of Planet Cancer or i2young4this.

The second opinion doc suggested he would put Ian into the hospital kind of to detox and get a handle on the pain,,,maybe use a pca pump. i suggested that to the onco people atthe BI last week and they didn't think they could do that,,,instead they upped his dose of methadone and gave him a script for liquid because of the vomitting.

I know they don't hospitalize cancer patients anymore but I honestly don't know that cancer is spread and is causing his pain or is the depression magnifying the pain. I don;t even really know whether they consider him palliative or end stage at this point...I don;t think they know either. One thing I like about his oncologists...they aren't fond of throwing staging around and although they don;t say "cure" they do say remission and they are in touch with the second opinion doc to share treatment plan ideas.

So after all my blather...If the cancer has spread this quickly am I pushing him and maybe he isn't giving up,,,maybe it is God's plan and he is shutting down because of the cancer?
Maybe its time to let him go and leave him to his choices? He did call the doctor on his own this evening to tell her that he hasn't been feeling good all week and hasn't been eating. That was a small victory for us...maybe...we shall see what they might plan to do to improve his strength and conditioning.

I am sorry I went on for so long...and again thanks so much but really I started out because I wanted to help Mike'sMom too.

Unknown

This comment has been removed by the Moderator

Tina Blondek

unknown said:

This comment has been removed by the Moderator

Hang In There
Hi Ians Mom
Glad to hear from you. This site is good therapy for you. It would be for Ian too, when he is ready to join us. I was thinking.....with his vomiting, have him take the anti nausea meds round the clock, instead of when he is already nausea. They do not work if you wait until that point. There are quite a few out there. If taken properly, they work great. He has got to get nutrition through his j tube. Even if you have to force him to do so. If he does not start getting nutrtition, he is going to become dehydrated. I agree with William, the ongologists have to be aggressive with his treatments. No time to waste. Keep up the good work. Keep in touch. Peace be with all of you at this difficult time. If this turns to Ian having to be hospitalized, I think that would be the best place for him. He could be monitored, and taken care of in ways you can not take care of him at home. I will be thinking of you and praying for you.
Tina

iansmom

unknown said:

This comment has been removed by the Moderator

Your words help
Thanks again for your support. I have a limited knowledge of medicine and have actually treated cancer patients...mostly my background is in rehabiliation medicine so I am used to seeing patients improve or plateau/ I was caregiver to my Dad when he was dying of lung cancer. it was hard but he was 79. He lived with my husband and our 3 boys and we went through the hospice process. Ian is very intelligent as one of the ladies mentioned yesterday and has internet savvy. I know that he has surfed and he knows that odds are not good but we also know that there is no reason he can't be on the side of the sucess stories with a little effort each day.

We were shocked by his dx because of his age,,,he doesn't smoke and hardly had a change to drink other than in college. he has had acid reflux since his early teens and was treated by our family dr. who is a GI,,,he just felt doing a scope wasn't necessary despite Ian's complaints. Ian finally got sick of going to the dr. He says all the doctor does is give me another pill to take that doesn't work. I asked that they do a upper GI a few years early because my dad had ulcers and my cousin has Barrets...but they said it was invasive and we couls wait...so we did. i don't want to sound hostile but...shoulda, woulda, coulda...i accept that this is God's plan. we are a family of strong faith. Ian has been eduated in catholic grammar and at a Christian Brothers High School. He knows that there is a Presence that is guiding us and we call him Jesus. We have prayed novennas to st Anthony, St Jude and Sister Jeanne Jugan. She is the parton of this horrid disease. she was canonized in October for having been attributed with the cure of a Dr. in Nebraska over 20 years ago. He was Stage 4 and riddled with cancer at the time of dx.He is still alive today. So yes I believe right up to the very last minute that there is hope and even after that there is a reason and peace. I would prefer the cure but will accept the outcome.

Thanks for letting me ramble

iansmom

Tina Blondek said:

Hang In There
Hi Ians Mom
Glad to hear from you. This site is good therapy for you. It would be for Ian too, when he is ready to join us. I was thinking.....with his vomiting, have him take the anti nausea meds round the clock, instead of when he is already nausea. They do not work if you wait until that point. There are quite a few out there. If taken properly, they work great. He has got to get nutrition through his j tube. Even if you have to force him to do so. If he does not start getting nutrtition, he is going to become dehydrated. I agree with William, the ongologists have to be aggressive with his treatments. No time to waste. Keep up the good work. Keep in touch. Peace be with all of you at this difficult time. If this turns to Ian having to be hospitalized, I think that would be the best place for him. He could be monitored, and taken care of in ways you can not take care of him at home. I will be thinking of you and praying for you.
Tina

Ian takes reglan round the clock...and Zofran and comp PRN. I talked with the onco dr and we both wonder if the reglan needs to be changed to something else. he sees them for fluids a few tmes a week to aid in the chemo process and he does drink water, juice and the occasional Italian ice cups. he runs water through the J Tube but it makeshim feel full and then he vomits.
i still worry that the dilauded is too much but what kind of a mother wants to make her child suffer...I just don;t know how much pain there is.
He goes in this morning to see the nurses and the drs stop by so they will look into the nausea/vomiting/nutrion pieces today.
The onco nurses are going to try again to have him talk with psych,,,maybe get him to at least Facebook some younger people...get him well enough to get out and enjoy a few hours of the day.
thanks again for your insights and experience.

Unknown

iansmom said:

Your words help
Thanks again for your support. I have a limited knowledge of medicine and have actually treated cancer patients...mostly my background is in rehabiliation medicine so I am used to seeing patients improve or plateau/ I was caregiver to my Dad when he was dying of lung cancer. it was hard but he was 79. He lived with my husband and our 3 boys and we went through the hospice process. Ian is very intelligent as one of the ladies mentioned yesterday and has internet savvy. I know that he has surfed and he knows that odds are not good but we also know that there is no reason he can't be on the side of the sucess stories with a little effort each day.

We were shocked by his dx because of his age,,,he doesn't smoke and hardly had a change to drink other than in college. he has had acid reflux since his early teens and was treated by our family dr. who is a GI,,,he just felt doing a scope wasn't necessary despite Ian's complaints. Ian finally got sick of going to the dr. He says all the doctor does is give me another pill to take that doesn't work. I asked that they do a upper GI a few years early because my dad had ulcers and my cousin has Barrets...but they said it was invasive and we couls wait...so we did. i don't want to sound hostile but...shoulda, woulda, coulda...i accept that this is God's plan. we are a family of strong faith. Ian has been eduated in catholic grammar and at a Christian Brothers High School. He knows that there is a Presence that is guiding us and we call him Jesus. We have prayed novennas to st Anthony, St Jude and Sister Jeanne Jugan. She is the parton of this horrid disease. she was canonized in October for having been attributed with the cure of a Dr. in Nebraska over 20 years ago. He was Stage 4 and riddled with cancer at the time of dx.He is still alive today. So yes I believe right up to the very last minute that there is hope and even after that there is a reason and peace. I would prefer the cure but will accept the outcome.

Thanks for letting me ramble

This comment has been removed by the Moderator

dwhite0002

Hi,
How old is Ian? I am 35
Hi,

How old is Ian? I am 35 and was diagnosed when I was 32. I would be happy to talk to you and/or Ian. I understand how he feels. This is so tough.

Let me know if you'd like to talk.

-David
Hillsboro, OH

dwhite0002@aol.com

Tina Blondek

iansmom said:

Your words help
Thanks again for your support. I have a limited knowledge of medicine and have actually treated cancer patients...mostly my background is in rehabiliation medicine so I am used to seeing patients improve or plateau/ I was caregiver to my Dad when he was dying of lung cancer. it was hard but he was 79. He lived with my husband and our 3 boys and we went through the hospice process. Ian is very intelligent as one of the ladies mentioned yesterday and has internet savvy. I know that he has surfed and he knows that odds are not good but we also know that there is no reason he can't be on the side of the sucess stories with a little effort each day.

We were shocked by his dx because of his age,,,he doesn't smoke and hardly had a change to drink other than in college. he has had acid reflux since his early teens and was treated by our family dr. who is a GI,,,he just felt doing a scope wasn't necessary despite Ian's complaints. Ian finally got sick of going to the dr. He says all the doctor does is give me another pill to take that doesn't work. I asked that they do a upper GI a few years early because my dad had ulcers and my cousin has Barrets...but they said it was invasive and we couls wait...so we did. i don't want to sound hostile but...shoulda, woulda, coulda...i accept that this is God's plan. we are a family of strong faith. Ian has been eduated in catholic grammar and at a Christian Brothers High School. He knows that there is a Presence that is guiding us and we call him Jesus. We have prayed novennas to st Anthony, St Jude and Sister Jeanne Jugan. She is the parton of this horrid disease. she was canonized in October for having been attributed with the cure of a Dr. in Nebraska over 20 years ago. He was Stage 4 and riddled with cancer at the time of dx.He is still alive today. So yes I believe right up to the very last minute that there is hope and even after that there is a reason and peace. I would prefer the cure but will accept the outcome.

Thanks for letting me ramble

Hi Ians MomThanks for you
Hi Ians Mom
Thanks for your recent post. You are most welcome. I am glad to be able to help you. I was happy to read that Ian and you will be seeing the drs and nurses today. Make sure everything is addressed. I agree, his anti nausea med may need to be changed. What works for some might not work for all. You come here and ramble whenever you want. Our ears are always open. As well as our hearts. Keep in touch.
Tina

mikesmom01

I saw your pain
Hello iansmom, I was reading and saw your post. I sure do feel your pain, and probably understand exactly how you're feeling. This has been terribly devastating and forever life changing, that's all there is to it. Your son is even a bit younger than mine, and I was told the same thing about the younger they are the more agressive this monster is. My son is or has gone thru the feelings and actions or lack of you're describing about your own son. I wish so badly that they'd reach out to others(like maybe each other) to draw on some experience, strength, and hope. Our little men do not have to be one of those statistics we hear about every day of our lives!! If there is a shread of hope, then I want it for my son. It's been totally exhausting and frustrating trying to keep on going each day with the constant struggles, complications, and challanges we're faced with........so in my mind I have to ask myself, then how must "he" feel?? Then I have to take a step back and re evaluate the entire situation. I realze he is a man and I need to abide by and respect HIS wishes, however I want him to make these permanent decisions based on alot of knowledge and education about the whole story going on with him. I'd like to talk to you sometime. If I can figure out how to PM you I'll send you my number. I'd like to try to hwelp you as so many have done for me, and still do everyday!!
Martha

Unknown

iansmom said:

Your words help
Thanks again for your support. I have a limited knowledge of medicine and have actually treated cancer patients...mostly my background is in rehabiliation medicine so I am used to seeing patients improve or plateau/ I was caregiver to my Dad when he was dying of lung cancer. it was hard but he was 79. He lived with my husband and our 3 boys and we went through the hospice process. Ian is very intelligent as one of the ladies mentioned yesterday and has internet savvy. I know that he has surfed and he knows that odds are not good but we also know that there is no reason he can't be on the side of the sucess stories with a little effort each day.

We were shocked by his dx because of his age,,,he doesn't smoke and hardly had a change to drink other than in college. he has had acid reflux since his early teens and was treated by our family dr. who is a GI,,,he just felt doing a scope wasn't necessary despite Ian's complaints. Ian finally got sick of going to the dr. He says all the doctor does is give me another pill to take that doesn't work. I asked that they do a upper GI a few years early because my dad had ulcers and my cousin has Barrets...but they said it was invasive and we couls wait...so we did. i don't want to sound hostile but...shoulda, woulda, coulda...i accept that this is God's plan. we are a family of strong faith. Ian has been eduated in catholic grammar and at a Christian Brothers High School. He knows that there is a Presence that is guiding us and we call him Jesus. We have prayed novennas to st Anthony, St Jude and Sister Jeanne Jugan. She is the parton of this horrid disease. she was canonized in October for having been attributed with the cure of a Dr. in Nebraska over 20 years ago. He was Stage 4 and riddled with cancer at the time of dx.He is still alive today. So yes I believe right up to the very last minute that there is hope and even after that there is a reason and peace. I would prefer the cure but will accept the outcome.

Thanks for letting me ramble

This comment has been removed by the Moderator

tb7

iansmom said:

Ian takes reglan round the clock...and Zofran and comp PRN. I talked with the onco dr and we both wonder if the reglan needs to be changed to something else. he sees them for fluids a few tmes a week to aid in the chemo process and he does drink water, juice and the occasional Italian ice cups. he runs water through the J Tube but it makeshim feel full and then he vomits.
i still worry that the dilauded is too much but what kind of a mother wants to make her child suffer...I just don;t know how much pain there is.
He goes in this morning to see the nurses and the drs stop by so they will look into the nausea/vomiting/nutrion pieces today.
The onco nurses are going to try again to have him talk with psych,,,maybe get him to at least Facebook some younger people...get him well enough to get out and enjoy a few hours of the day.
thanks again for your insights and experience.

Sugar Content ?
You might want to check the sugar content of what Ian is consuming. My husband has a very, very difficult time with anything that has any sugar in it. At first, we thought his problem was lactose intolerance, but after much trial and error, it seems to be the sugar content that undoes him and makes him sick and uncomfortable. He cannot tolerate any juices. The Italian ice cups, if they are sweetened would create problems as well. And, oddly enough, too much water with a meal cannot be handled.

tb7

iansmom said:

Your words help
Thanks again for your support. I have a limited knowledge of medicine and have actually treated cancer patients...mostly my background is in rehabiliation medicine so I am used to seeing patients improve or plateau/ I was caregiver to my Dad when he was dying of lung cancer. it was hard but he was 79. He lived with my husband and our 3 boys and we went through the hospice process. Ian is very intelligent as one of the ladies mentioned yesterday and has internet savvy. I know that he has surfed and he knows that odds are not good but we also know that there is no reason he can't be on the side of the sucess stories with a little effort each day.

We were shocked by his dx because of his age,,,he doesn't smoke and hardly had a change to drink other than in college. he has had acid reflux since his early teens and was treated by our family dr. who is a GI,,,he just felt doing a scope wasn't necessary despite Ian's complaints. Ian finally got sick of going to the dr. He says all the doctor does is give me another pill to take that doesn't work. I asked that they do a upper GI a few years early because my dad had ulcers and my cousin has Barrets...but they said it was invasive and we couls wait...so we did. i don't want to sound hostile but...shoulda, woulda, coulda...i accept that this is God's plan. we are a family of strong faith. Ian has been eduated in catholic grammar and at a Christian Brothers High School. He knows that there is a Presence that is guiding us and we call him Jesus. We have prayed novennas to st Anthony, St Jude and Sister Jeanne Jugan. She is the parton of this horrid disease. she was canonized in October for having been attributed with the cure of a Dr. in Nebraska over 20 years ago. He was Stage 4 and riddled with cancer at the time of dx.He is still alive today. So yes I believe right up to the very last minute that there is hope and even after that there is a reason and peace. I would prefer the cure but will accept the outcome.

Thanks for letting me ramble

Clinical Trial ?
Don't know where you are located, but I thought I would share our experience with a clinical trial through the Case Comprehensive Cancer Center (University Hospitals, Ireland Cancer Center, Cleveland, OH). You might want to explore Clinical Trials.

My husband participated in a trial. I have included the website to explore the trial specifics, if you are interested in doing so. Our son is about the same age as yours, so I feel greatly for you. Going through this disease with my husband is difficult enough. I cannot imagine how I would be if my son was afflicted. The inclusion/exclusion requirements for the trial are pretty specific. You can review them by going online to . . .

http://www.cancer.gov/clinicaltrials/CASE-6507
http://clinicaltrials.gov/show/NCT00732745

The trial produced great results for my husband. He had six cycles of chemo treatments since January, and he has now finished chemo infusions. His last CT scan showed NED. He will have another CT scan on June 4 and every eight weeks thereafter. He will also continue to take, on a daily basis, a pill which is a non-FDA approved drug that is being tested through this study. The clinical trial is still open and recruiting participants. The advantage of the trial we entered is that it includes the use of two already-approved chemo agents (Oxaliplatin & Docetaxel) along with an experimental drug (Vandetanib). We felt that, even though we were experimenting, we would have the benefit of receiving commonly used drugs in addition to the experimental agent. Of course, we are not sure which of the three chemo agents or their combination has contributed to treatment success, but we are happy to have good results to report!

Some additional thoughts for Ian. Our clinical trial oncologist has suggested that looking at stats can be very misleading, since many of the chemo agents and chemo combinations used in treatment today have been developed in the last six to seven years. Many stats are derived from data that is dated. It is important to understand that EC victims are very different from each other and respond differently to treatment. We all need to keep the hope and expectation alive that there are treatments that will help combat this horrible cancer. My husband is much like your son, like Sherri's husband, and so many others on this site. He was healthy, althletic, not a smoker, not a drinker, just lived a good, prudent life. Then this. No one knows where it comes from. He is the only person in his family, for as long back as anyone knows, who has ever been striken with cancer.

I hope the best for you and your family. Somehow, I hope you find a way to get through to Ian that life is worth living, that it is worth the fight. Just around the corner, there may be a cure, or a least a long-term remission.

Trisha

iansmom

unknown said:

This comment has been removed by the Moderator

Too Many Questions?
You mentioned that your husband Jim is Stage 1VB....when was he diagnosed?Has his cancer metasticized and if so to where? Can you give me an idea of what his pain exeperience has been like and what about nausea and vomiting? Does he have a tube for feeding? I read that he goes off to work and does other activities so he has some positive energy.What kind of meds does he use.
Please pardon all my questions...I am just trying to understand Ian's pain level and tolerance for activities
I really appreciated what your 21 year old son had to say. It shed some light that I hadn't considered.
Again sorry to be so inquisitive,,,,I just don't know if I am pushing too hard.

iansmom

Tina Blondek said:

Hi Ians MomThanks for you
Hi Ians Mom
Thanks for your recent post. You are most welcome. I am glad to be able to help you. I was happy to read that Ian and you will be seeing the drs and nurses today. Make sure everything is addressed. I agree, his anti nausea med may need to be changed. What works for some might not work for all. You come here and ramble whenever you want. Our ears are always open. As well as our hearts. Keep in touch.
Tina

Thanks Tina
I appreciate your help...the nurses did suggest a nausea patch...so we are trying that as of today. Can't gauge the results just yet. They are also consulting with the pain management people again and they want him to uo his ritalin. They prescribe ritalin for older cancer patients tp help increase energy,,,apparently it works in reverse but with Ian he is borderline age appropriate for the proper use...we shall see if it works.

Believe me when I tell you those nurses and doctors get a litany of questions at every visit and yet they haven't thrown me out yet.

Unknown

iansmom said:

Too Many Questions?
You mentioned that your husband Jim is Stage 1VB....when was he diagnosed?Has his cancer metasticized and if so to where? Can you give me an idea of what his pain exeperience has been like and what about nausea and vomiting? Does he have a tube for feeding? I read that he goes off to work and does other activities so he has some positive energy.What kind of meds does he use.
Please pardon all my questions...I am just trying to understand Ian's pain level and tolerance for activities
I really appreciated what your 21 year old son had to say. It shed some light that I hadn't considered.
Again sorry to be so inquisitive,,,,I just don't know if I am pushing too hard.

This comment has been removed by the Moderator

Tina Blondek

iansmom said:

Thanks Tina
I appreciate your help...the nurses did suggest a nausea patch...so we are trying that as of today. Can't gauge the results just yet. They are also consulting with the pain management people again and they want him to uo his ritalin. They prescribe ritalin for older cancer patients tp help increase energy,,,apparently it works in reverse but with Ian he is borderline age appropriate for the proper use...we shall see if it works.

Believe me when I tell you those nurses and doctors get a litany of questions at every visit and yet they haven't thrown me out yet.

Hi Ian's mom,
I am so glad
Hi Ian's mom,
I am so glad you went to see the drs and had some good results. The nausea patch should work well. From what I have learned about them. People use them for motion sickness, and they work great. The ritalin is the same med as the adderall. They are both for add. they help with anxiety and focusing. My husband is on adderall for adult attention disorder. The one side effect that he gets is not having an appetite. It is an appetitite supressant.
If you want to talk to Martha, Mikes mom, you can send her a private message through the csn home page. Sounds like today was a pretty good for all of you, and I am happy to hear that. Keep asking all those questions! The more you know the better. Hugs to you and Ian.
Keep in touch.
Tina

iansmom

unknown said:

This comment has been removed by the Moderator

You have made my day
Thanks so much...youhave made me feel so much better about my concerns about his pain and the mets. I think Ian was disheartened with the news that the cancer had spread. I plan on telling him about Jim and his story and maybe even getting him to read these pages...or maybe they would be too overwhelming...anyway I plan on letting him know that Jim is doing so much more with his days. Ian is currently on a new cycle and oxiliplatin is one of the drugs the other is irintecan. They did he C-Platin and 5FU and that did shrink the original tumor enough for surgery. I know you have given me a boost of hopeful. I really don't get too down for too long because its just not the way I was raised and I know that God has his plan. Thanks again for the boost

iansmom

dwhite0002 said:

Hi,
How old is Ian? I am 35
Hi,

How old is Ian? I am 35 and was diagnosed when I was 32. I would be happy to talk to you and/or Ian. I understand how he feels. This is so tough.

Let me know if you'd like to talk.

-David
Hillsboro, OH

dwhite0002@aol.com

Hi David
Ian is 22. What was your stage at dx? Did you have surgery?

iansmom

mikesmom01 said:

I saw your pain
Hello iansmom, I was reading and saw your post. I sure do feel your pain, and probably understand exactly how you're feeling. This has been terribly devastating and forever life changing, that's all there is to it. Your son is even a bit younger than mine, and I was told the same thing about the younger they are the more agressive this monster is. My son is or has gone thru the feelings and actions or lack of you're describing about your own son. I wish so badly that they'd reach out to others(like maybe each other) to draw on some experience, strength, and hope. Our little men do not have to be one of those statistics we hear about every day of our lives!! If there is a shread of hope, then I want it for my son. It's been totally exhausting and frustrating trying to keep on going each day with the constant struggles, complications, and challanges we're faced with........so in my mind I have to ask myself, then how must "he" feel?? Then I have to take a step back and re evaluate the entire situation. I realze he is a man and I need to abide by and respect HIS wishes, however I want him to make these permanent decisions based on alot of knowledge and education about the whole story going on with him. I'd like to talk to you sometime. If I can figure out how to PM you I'll send you my number. I'd like to try to hwelp you as so many have done for me, and still do everyday!!
Martha

You echo my thoughts
Everything you have said I would have written. My husband has even gone so far as to wish it were him. I too thought they should meet on line and talk...there are groups out there just for young adults with cancer...do you know about them and/or would you like me to send you more information? Ian has refused to go to anything,,,says that he is too sick or tired or both. Does your son Facebook? Maybe that is how they could converse.
I sent you a PM this morning,,,did you get it?

iansmom

tb7 said:

Clinical Trial ?
Don't know where you are located, but I thought I would share our experience with a clinical trial through the Case Comprehensive Cancer Center (University Hospitals, Ireland Cancer Center, Cleveland, OH). You might want to explore Clinical Trials.

My husband participated in a trial. I have included the website to explore the trial specifics, if you are interested in doing so. Our son is about the same age as yours, so I feel greatly for you. Going through this disease with my husband is difficult enough. I cannot imagine how I would be if my son was afflicted. The inclusion/exclusion requirements for the trial are pretty specific. You can review them by going online to . . .

http://www.cancer.gov/clinicaltrials/CASE-6507
http://clinicaltrials.gov/show/NCT00732745

The trial produced great results for my husband. He had six cycles of chemo treatments since January, and he has now finished chemo infusions. His last CT scan showed NED. He will have another CT scan on June 4 and every eight weeks thereafter. He will also continue to take, on a daily basis, a pill which is a non-FDA approved drug that is being tested through this study. The clinical trial is still open and recruiting participants. The advantage of the trial we entered is that it includes the use of two already-approved chemo agents (Oxaliplatin & Docetaxel) along with an experimental drug (Vandetanib). We felt that, even though we were experimenting, we would have the benefit of receiving commonly used drugs in addition to the experimental agent. Of course, we are not sure which of the three chemo agents or their combination has contributed to treatment success, but we are happy to have good results to report!

Some additional thoughts for Ian. Our clinical trial oncologist has suggested that looking at stats can be very misleading, since many of the chemo agents and chemo combinations used in treatment today have been developed in the last six to seven years. Many stats are derived from data that is dated. It is important to understand that EC victims are very different from each other and respond differently to treatment. We all need to keep the hope and expectation alive that there are treatments that will help combat this horrible cancer. My husband is much like your son, like Sherri's husband, and so many others on this site. He was healthy, althletic, not a smoker, not a drinker, just lived a good, prudent life. Then this. No one knows where it comes from. He is the only person in his family, for as long back as anyone knows, who has ever been striken with cancer.

I hope the best for you and your family. Somehow, I hope you find a way to get through to Ian that life is worth living, that it is worth the fight. Just around the corner, there may be a cure, or a least a long-term remission.

Trisha

Cinical trials
We are looking at clinical trials here at Massachusetts General if the regimen they are using doesn't help slow the mets.
There is a great article on line about "The Median isn't the Message" by Stephen Jay Gould
http://cancerguide.org/median_not_msg.html

I don't believe much in Statistics...I think they can be manipulated and you never can know exactly what they are indicating. There are always skews because no one is exactly the same and there are mitigating factors...the greatest being positive attitude, working to stay healthy and desire. I also beleive in prayer. Thanks for your input.

mikesmom01

iansmom said:

You echo my thoughts
Everything you have said I would have written. My husband has even gone so far as to wish it were him. I too thought they should meet on line and talk...there are groups out there just for young adults with cancer...do you know about them and/or would you like me to send you more information? Ian has refused to go to anything,,,says that he is too sick or tired or both. Does your son Facebook? Maybe that is how they could converse.
I sent you a PM this morning,,,did you get it?

It's not coincidence
Yes, you had definetly echoed my thought as well. I tried to call you last night and left you a message. I was feeling just awful. I'd called my son on my home from work yesterday and he was really sick, I could hear it in his voice, and I could tell he wanted to talk but just felt too bad, hs voice was all quivery. I didn't keep him on the line because I felt so bad for him. I started to cry and had to pull over for a few minutes just to get myself collected enough to drive home. What I thought of was this place, you, and some of the others that are all going thru the same thoughts and feelings.

I talked to God again last night, and asked him to guide me, to show me what to do next. I told him that I cannot do this by myself, to please help me be at peace with whatever his will is for my son as well as for myself.

This weekend I'll see if I can spark some interest in my son to talk to yours, or like you mentioned mayfe facebook or something. I'll keep you posted.

Thanks for listening.
Martha