Cancer patients who are considering going to a stem cell clinic overseas in Korea or Mexico or the Philippines or Panama or ANYwhere can and should do ANY or all of these 11 things:
#1. Most IMPORTANT: (a) Find out if stem cell therapy is LEGAL in the country you will be in. Don't take the doctor's or a patient's word; for example, they may be legal in Mexico, Japan, & China but may not be in Korea, the U.S., or Panama; (b) TALK TO YOUR DOCTOR to see if he/she will CONTINUE to treat you once you return from overseas. Most doctors' malpractice insurance may not allow it if you continue with follow-up treatments or injections of unknown and unproven substances; (c) Don't take anyone's word that your insurance will pay for ANYthing overseas.
#2. When asked to submit to a cash-only $2,500, or other dollar amount, blood test - check with your state Medical Board to see if the laboratory is even CERTIFIED to do such. The number in TEXAS, for example, is (713) 767-3340.
#3. Read the website of the non-profit International Society of Stem Cell Research, http://www.closerlookatstemcells.org//AM/Template.cfm?Section=Home1. They take submissions and investigate suspect stem-cell clinics.
#4. If a foreign doctor claims to be affiliated with well-known U.S. medical institutions, FIND OUT if they really are, i.e., MD Anderson phone is 1-877-MDA-6789; The Mayo Clinic phone is (904) 953-2000 (or email: CancerResearch@mayo.edu); Johns Hopkins phone is (410) 955-5222, etc.
#5. If a doctor claims to be an oncologist, find out if he/she really is. Ask for his official resume.
#6. Talk to other patients who have been CURED by the doctor in question, then make sure they exist--get a phone number, etc., and (important) talk ONLY with patients whose cancer NEVER ever returned for at least TWO years. If you can't find any, then there has been no one CURED. Do NOT talk to patients just recently cured in the last 6 mos and have not yet had a follow up CT or cancer test in (very important) a U.S. lab that is *NOT* owned by the same doctor. Ask them these 3 questions: a. Did they have a CONFIRMED (tissue biopsy--not just a blood test) diagnosis of cancer BEFORE they went overseas for treatments? b. Are they financially involved with this doctor or are they employed by this doctor? c. Ask how much the patient spent on EVERYthing; the TRUE cost of your treatments is not likely to be known up front, even though estimates are given. Stem Cell clinics usually charge $50-$100K CASH. But that is just the beginning. Ask if the patient ALSO had surgery, chemo, cyberknife, radiation, etc., and WHERE and at what cost. How often have they had to return for treatments--what cost? Ask the cost of their hotel ($250/night is not uncommon) and how long they stayed. Always plan to stay longer than you are told--get a 3-month VISA.
#7. If you receive any media info, letters, website info, etc. about cured patients, undated, FOLLOW UP AND SEE IF THEY ARE STILL ALIVE. Some might be dead. Ask the doctor to give them YOUR contact info, since the doctor may not want to give you theirs, although HIPAA (privacy) laws apply only in the U.S. where Congress created them. The Social Security Death Index can be found at: http://ssdi.rootsweb.ancestry.com/cgi-bin/ssdi.cgi
#8. If you want to make sure the foreign doctor really is a doctor, contact the places he claims to have graduated from. If doing ANYthing "medical" in the U.S., make sure the doctor is LICENSED. Phone the state medical board. For example, you can merely do an internet NAME search in TEXAS at: http://www.docboard.org/tx/df/txsearch.htm or fax your request to the Texas Medical Board at(512) 463-9416; or phone 1-800-248-4062.
#9. Google the doctor's name, the clinic name, the city. Search the full name AND just "Dr lastname" as well, i.e., "Kim Wang" or "Harry Goodkin" as well as "Dr. Wang" or "Dr. Goodkin." Read ALL the screens, not just the first one that shows up. You may find several former patients of that doctor. Google the name of the doctor's company and city, i.e., "Goodkin Korea" or "Immustim Mexico."
#10. If the doctor claims to have been nominated for the Nobel Peace Prize, you can contact the Nobel Committee at: http://www.nobelprize.org/nobel_prizes/medicine/nomination/ Their email is: comments@nobelprize.org and info@nobel.se
#11. LAST: Check out a MEDICAL FRAUDS & SCAMS website: www.quackwatch.com in early 2012. The doctor there does incredibly thorough, documented research and posts his findings publicly. Take note, too, that if hospitalized overseas (stem cells usually cause high fever (rejection) and might call for hospitalization), doctors there may not have had the same length of medical training as U.S. doctors, and hospitals there may have limited drug supplies, especially anti-nausea meds (for chemo) and anesthetics, even soap. You would need to take a 3-month supply of all your own current meds. Ask the clinic for their "what-to-do/bring" checklist BEFORE you commit to wiring that $50,000 or whatever you have been told to send.
~
Tuesday, November 22, 2011
Friday, October 21, 2011
Responsibility
No matter what decisions you make towards your own care... do yourself a favor and actually RESEARCH these options. Check blogs, news stories, check with other patients and most importantly, see what published medical successes are attributed with said options.
Tuesday, November 9, 2010
She's Gone
My mother passed away Monday, November 1, 2010 at 6:00 pm.
I had flown in on October 20th because she had been hospitalized from a breathing incident she had the day before. She was released the day I flew in and later the same day, she received a hospital bed and other equipment to her house from Hospice.
Watching her struggle during this time was the most painful experience I have ever had. I have never felt so helpless in my entire life. My gosh, she had such fight in her but there was also another side of her that didn’t want to fight anymore. She was so tired.
The last three days of her life, she had taken such a drastic turn for the worse. I slept with one eye open on her bedroom floor and then, her first which was also her last night at a hospice hospital. She kept wanting to get up and go somewhere but her poor legs could not have taken her anywhere. I had to get up all night long and remind her that she needed to let her weak legs rest and that we’ll talk and watch the news in the morning.
The night before she passed away at the hospice hospital, I received a not-so-lovely email that I won’t go into. I was on the edge of my mother’s life. When I read it, I felt my face grow hot… then deep tingling in my fingers and then they went numb, contorted and froze until I could calm down. The nurse said I had hyperventilated. Never heard of that happening before but I guess stress can do a lot of things. Unfortunately, things had happened so quickly over those past few days that I was only focused on doing what my mother needed. I couldn’t leave her for a minute because she would pull off her oxygen or try to walk somewhere and surely fall. My mother needed things from me that I never thought would happen until much later in life. She had only recently turned 65. It was not supposed to be this way yet.
Earlier in the day that my mother died, her nurse came in to talk to me in her room. She told me that she believes my mother can hear her so she is going to tell me things she would also like my mother to know. The nurse explained some medical things and then told me the following: “Since you are here all day, you need to know that most patients will wait until their loved one(s) have left their room before they pass. It happens more often than not. A family will tell the patient that they are stepping out for a 30 minute lunch… but when they come back, that person will have died. You need to go for walks”.
A little later the same day, a hospice nurse (Marie, who had spent 3 hours with us the day before on a Sunday) dropped by her room. She went up to her, wiped some hair from her forehead and told her “it’s OK to go. Go into the spirit world. God bless you”. When Marie left, I kissed my mother’s hand and told her the same thing… “it’s OK to go”. As my mother was a fairly non-religious person, I told her… “be with Grandma and be with your brother. You will see the face of God and you will love Him as much as He loves you”.
I then went into the Sanctuary to talk to my husband and children on the phone. When I came back into my mother’s room, I felt “stillness”. It could actually be felt. I stood there and watched her… just stillness. I went over and kissed her hand again, told her I loved her and to have peace. No more fighting to breathe, no more struggling to walk, no more pain and no more endless nights. Just stillness and peace.
This blog was supposed to be about my mother’s experience with an alternative to American cancer treatment and those results. It now ends up being a public goodbye. She was concerned about the money she spent in Korea ($100,000 is not cheap) but as they say, “you can’t take it with you” and it did give us those four weeks of time together and that is priceless. My mind, heart and emotion will need to take me back before she became sick and remember so much good that enveloped her. She was a good person in every sense of the word. Kind to everyone and never judged. Cancer did not and does not define her.
Just a few days before I flew to be with her, we spoke on the phone. She told me how obvious it was that I loved her. I promised her that it would never be even a fraction less than obvious.
I wrote this poem years ago for an extraordinary woman, my mother, from a daughter that loves her.
“It’s my first Mother’s Day… as a Mom, that is
And I can’t help but recall when I was a kid.
As I sift back through those memories,
I’m so amazed and can hardly believe…
All that you did and all that you gave
Where do I begin? What do I say?
You are more to me than what you can see.
You are strength, love and sincerity.
There was only one person who could end a nightmare.
One person who knew no monsters were there.
Pennies on train tracks and making a wish,
Horses and sailing and hours of “Go Fish”.
“Rise and shine, Miss America”… do you remember?
Each morning you’d say this… it seems like forever.
Walking home from school, I got lost my first day
There you were around the corner and I saw your face.
You taught me to fly when I didn’t have wings.
I traveled to places I might never have seen.
If you hadn’t given me the courage to venture beyond,
Always knowing you’d catch me if something went wrong.
I wish…
You knew how much you’ve really given
And how much you’ve made me believe in
Pennies on train tracks and making a wish,
As I hold up my daughter and pass down your kiss”.
~~
I had flown in on October 20th because she had been hospitalized from a breathing incident she had the day before. She was released the day I flew in and later the same day, she received a hospital bed and other equipment to her house from Hospice.
Watching her struggle during this time was the most painful experience I have ever had. I have never felt so helpless in my entire life. My gosh, she had such fight in her but there was also another side of her that didn’t want to fight anymore. She was so tired.
The last three days of her life, she had taken such a drastic turn for the worse. I slept with one eye open on her bedroom floor and then, her first which was also her last night at a hospice hospital. She kept wanting to get up and go somewhere but her poor legs could not have taken her anywhere. I had to get up all night long and remind her that she needed to let her weak legs rest and that we’ll talk and watch the news in the morning.
The night before she passed away at the hospice hospital, I received a not-so-lovely email that I won’t go into. I was on the edge of my mother’s life. When I read it, I felt my face grow hot… then deep tingling in my fingers and then they went numb, contorted and froze until I could calm down. The nurse said I had hyperventilated. Never heard of that happening before but I guess stress can do a lot of things. Unfortunately, things had happened so quickly over those past few days that I was only focused on doing what my mother needed. I couldn’t leave her for a minute because she would pull off her oxygen or try to walk somewhere and surely fall. My mother needed things from me that I never thought would happen until much later in life. She had only recently turned 65. It was not supposed to be this way yet.
Earlier in the day that my mother died, her nurse came in to talk to me in her room. She told me that she believes my mother can hear her so she is going to tell me things she would also like my mother to know. The nurse explained some medical things and then told me the following: “Since you are here all day, you need to know that most patients will wait until their loved one(s) have left their room before they pass. It happens more often than not. A family will tell the patient that they are stepping out for a 30 minute lunch… but when they come back, that person will have died. You need to go for walks”.
A little later the same day, a hospice nurse (Marie, who had spent 3 hours with us the day before on a Sunday) dropped by her room. She went up to her, wiped some hair from her forehead and told her “it’s OK to go. Go into the spirit world. God bless you”. When Marie left, I kissed my mother’s hand and told her the same thing… “it’s OK to go”. As my mother was a fairly non-religious person, I told her… “be with Grandma and be with your brother. You will see the face of God and you will love Him as much as He loves you”.
I then went into the Sanctuary to talk to my husband and children on the phone. When I came back into my mother’s room, I felt “stillness”. It could actually be felt. I stood there and watched her… just stillness. I went over and kissed her hand again, told her I loved her and to have peace. No more fighting to breathe, no more struggling to walk, no more pain and no more endless nights. Just stillness and peace.
This blog was supposed to be about my mother’s experience with an alternative to American cancer treatment and those results. It now ends up being a public goodbye. She was concerned about the money she spent in Korea ($100,000 is not cheap) but as they say, “you can’t take it with you” and it did give us those four weeks of time together and that is priceless. My mind, heart and emotion will need to take me back before she became sick and remember so much good that enveloped her. She was a good person in every sense of the word. Kind to everyone and never judged. Cancer did not and does not define her.
Just a few days before I flew to be with her, we spoke on the phone. She told me how obvious it was that I loved her. I promised her that it would never be even a fraction less than obvious.
I wrote this poem years ago for an extraordinary woman, my mother, from a daughter that loves her.
“It’s my first Mother’s Day… as a Mom, that is
And I can’t help but recall when I was a kid.
As I sift back through those memories,
I’m so amazed and can hardly believe…
All that you did and all that you gave
Where do I begin? What do I say?
You are more to me than what you can see.
You are strength, love and sincerity.
There was only one person who could end a nightmare.
One person who knew no monsters were there.
Pennies on train tracks and making a wish,
Horses and sailing and hours of “Go Fish”.
“Rise and shine, Miss America”… do you remember?
Each morning you’d say this… it seems like forever.
Walking home from school, I got lost my first day
There you were around the corner and I saw your face.
You taught me to fly when I didn’t have wings.
I traveled to places I might never have seen.
If you hadn’t given me the courage to venture beyond,
Always knowing you’d catch me if something went wrong.
I wish…
You knew how much you’ve really given
And how much you’ve made me believe in
Pennies on train tracks and making a wish,
As I hold up my daughter and pass down your kiss”.
~~
Tuesday, October 26, 2010
Deletion Completion
Well, I have deleted my Letter to Dr. Moon per a family member's request. That person is the only reason why I would do that. It feels dishonest to delete it and I am sick over doing it.
Monday, August 2, 2010
Sometimes the hardest thing to write is the "Title" of a blog...
Mom got out of the hospital late Saturday. She had been in there for a couple of days; taken there because of severe shortness of breath. She had also been experiencing edema and extreme tiredness. Mom recently had a pain medication implant put in, so the thought was maybe the shortness of breath was a side effect from that. But they found fluid in her lung and needed to drain it. They also found multiple nodules within the left lung. Of course, the hope is the nodules don't do anything... just stay where they are. She will also now be using oxygen 24/7. I know she doesn't want to have to deal with that but it will help her. Right now, she needs to recover from all of this. And she will. She would get right back out there even she had an anvil tied to her ankle... she'd drag it to work and throw it over her shoulder at meetings. That, ladies and gentlemen, is m'mom.
Monday, May 3, 2010
and the UPDATE is...
Mom got the results of her first CT scan since returning home from Korea... and I have to say "we may never really know" if the treatments in Korea worked or not. The CT didn't really show anything getting really worse. The radiologist thought the top lobe of her lung looked a little better, but the bottom lobe looked a little worse. There is so much opacity showing in the CT in that lung and it can be collapsed lung, scar tissue from all the radiation she's had, or disease. No one can really tell. The distinctive tumors she had in the upper lobe can't be seen anymore because the entire area is so full of opacity now. They looked at the CT side-by-side to the one taken last August (before the last round of radiation here or in Korea) and it was really hard to see any difference. Mom says that there is a lot to be grateful for in that it hasn't gotten worse over the last 8 months, and that's huge. It didn't get any better either (at least that we can tell) and that's certainly disappointing.
Mom and her pal asked the doc if he thought the treatments in Korea helped at all. He said yes, because she was still sitting there and still working full time. He said most patients with her kind of cancer only make it a few months to a year. He also said he thought going was good for her psychologically and emotionally. He didn't think that she would do well just sitting around doing nothing. She asked what would he suggest next. He said there were a few drugs out there, but that she'd already done the big ones. There isn't a lot of treatments for people this long into the disease because there aren't that many of them, although the number is growing. He suggested naturalpathic treatments, and thought she'd do well trying the naturalpathic school in Portland.
So there you go.
I basically told her this...
I just read about James Blue. I feel bad for his wife. You and he were so different though. He went to Korea in a wheelchair and hooked up to oxygen. And with or without all that treatment in Korea, your cancer hasn't spread. That definitely could have happened without going but it's possible it helped too. I guess there will be no real way to know for sure. So for your own peace of mind, you might go with the thought that maybe it did. Because if it just ended up being a very expensive vacation for you, it sure wasn't very fun. :-)
I think that you are going to be a testament to this fight with stage IV lung cancer. You are an example of someone who CAN keep fighting and working and living.
Whatever you are doing, Mom... keep doing it. You may not be 100% and maybe still right where you were 8 months ago... but to be where you were 8 months ago is pretty darn remarkable. Don't you think?
Yep, and that is that. Mom is coming up on three years after diagnosis of Stage IV lung cancer. Still working 40 hours per week and still just as strong and wilfull as ever. I remember Dr. Cho in Korea having a hard time too reading the CT scan because of all the opacity.
To me, this has been like walking into a really dark area where you have to feel your way around to find the way back out. This new scan is still like walking into a really dark area, feeling your way around and still finding the same way back out. After the treatment, it would have been nice to know that the area was filled with light. However, I think we have to realize that the way out could have been lost forever. Well, it's not. It's still dark but there is a lot of hope that we can live with that and get used to feeling our way around and always find the door out.
I love you, Mom.
Mom and her pal asked the doc if he thought the treatments in Korea helped at all. He said yes, because she was still sitting there and still working full time. He said most patients with her kind of cancer only make it a few months to a year. He also said he thought going was good for her psychologically and emotionally. He didn't think that she would do well just sitting around doing nothing. She asked what would he suggest next. He said there were a few drugs out there, but that she'd already done the big ones. There isn't a lot of treatments for people this long into the disease because there aren't that many of them, although the number is growing. He suggested naturalpathic treatments, and thought she'd do well trying the naturalpathic school in Portland.
So there you go.
I basically told her this...
I just read about James Blue. I feel bad for his wife. You and he were so different though. He went to Korea in a wheelchair and hooked up to oxygen. And with or without all that treatment in Korea, your cancer hasn't spread. That definitely could have happened without going but it's possible it helped too. I guess there will be no real way to know for sure. So for your own peace of mind, you might go with the thought that maybe it did. Because if it just ended up being a very expensive vacation for you, it sure wasn't very fun. :-)
I think that you are going to be a testament to this fight with stage IV lung cancer. You are an example of someone who CAN keep fighting and working and living.
Whatever you are doing, Mom... keep doing it. You may not be 100% and maybe still right where you were 8 months ago... but to be where you were 8 months ago is pretty darn remarkable. Don't you think?
Yep, and that is that. Mom is coming up on three years after diagnosis of Stage IV lung cancer. Still working 40 hours per week and still just as strong and wilfull as ever. I remember Dr. Cho in Korea having a hard time too reading the CT scan because of all the opacity.
To me, this has been like walking into a really dark area where you have to feel your way around to find the way back out. This new scan is still like walking into a really dark area, feeling your way around and still finding the same way back out. After the treatment, it would have been nice to know that the area was filled with light. However, I think we have to realize that the way out could have been lost forever. Well, it's not. It's still dark but there is a lot of hope that we can live with that and get used to feeling our way around and always find the door out.
I love you, Mom.
Monday, March 8, 2010
Direct from Mom
Here is a verbatim quote from mom:
"Well this has been quite a week for me. Monday Emergency room and learning that the new hurt is a broken rib, then into work; Tuesday the Pain Clinic for a nerve block to try and slow down the rib pain then into work; Wednesday work all day; Thursday chemo from 8:00 to 4:30. A long day... My onc is trying to follow what I told him about the chemo I received in Korea (as well as the kind and dosage as provided by Dr. Moon). Boy the hydration sure had me running to the restroom a lot and I think they may have given me more benedryl than perhaps I needed because I nodded off and on for hours. They also gave me a couple of different anti-nausea pills and IV pushes. Today I don't feel so hot, still taking anti-nausea stuff and Tylenol for the headache I woke up with this morning and at work by 7:00".
The good news from this is that the nerve block she got last Tuesday is working and she's feeling much better now. A broken rib (ouch!). Also, the good news is that the Tykerb will be here in a couple of weeks.
One of the patients, Dawn, wrote on her CaringBridge, that her new scans show no evidence of cancer. I asked mom what she thought about this and she said:
"I did read Dawn's CaringBridge and I do believe it's possible. In other areas of discussion on the internet, I've seen it referred to at NED ( No Evidence of Disease). The trick now is to somehow kill all the little cancer cells floating in her bloodstream that are looking for a home".
I hope that she will continue to update even after she gets home. She's a nice lady.
So, that's it for now. Mom should have her scan end of this month/early April. Will let you know more as it happens.
"Well this has been quite a week for me. Monday Emergency room and learning that the new hurt is a broken rib, then into work; Tuesday the Pain Clinic for a nerve block to try and slow down the rib pain then into work; Wednesday work all day; Thursday chemo from 8:00 to 4:30. A long day... My onc is trying to follow what I told him about the chemo I received in Korea (as well as the kind and dosage as provided by Dr. Moon). Boy the hydration sure had me running to the restroom a lot and I think they may have given me more benedryl than perhaps I needed because I nodded off and on for hours. They also gave me a couple of different anti-nausea pills and IV pushes. Today I don't feel so hot, still taking anti-nausea stuff and Tylenol for the headache I woke up with this morning and at work by 7:00".
The good news from this is that the nerve block she got last Tuesday is working and she's feeling much better now. A broken rib (ouch!). Also, the good news is that the Tykerb will be here in a couple of weeks.
One of the patients, Dawn, wrote on her CaringBridge, that her new scans show no evidence of cancer. I asked mom what she thought about this and she said:
"I did read Dawn's CaringBridge and I do believe it's possible. In other areas of discussion on the internet, I've seen it referred to at NED ( No Evidence of Disease). The trick now is to somehow kill all the little cancer cells floating in her bloodstream that are looking for a home".
I hope that she will continue to update even after she gets home. She's a nice lady.
So, that's it for now. Mom should have her scan end of this month/early April. Will let you know more as it happens.
Friday, February 26, 2010
The Bold and the Beautiful
I just wanted to write a little about Jackie. She is the one I wrote early on about, who is from Oklahoma and came to Korea with stage IV pancreatic cancer. She has a rich Southern drawl and is an incredibly devoted Christian woman. When she meets you, she has a heartful of love for you and a smile that doesn't wane. She gave me a white blood cell stimulation shot, I put on her pain patch. She worked on mom's skepticism and everyone's religious persuasion.
While in Korea, we always wanted to know how she was doing. She's been through the wringer, emotionally and physically (I don't think ever, spiritually). After Cyberknife, various chemos, stem cells and gene therapy... her tumor has shrunk from the size of a small mango to the size of a nickel. I keep up on her (and a couple of other's) updates through CaringBridge every day.
There is nothing more inspirational than watching someone with a huge and mostly impossible battle before them... and see them do, fight and persevere every step of the way. What is happening with her, seems to be doing some good. She'd be quite the miracle if she actually beats her cancer (especially being that it's pancreatic). I know that Dr. Moon cares a great deal about her and I know that he is doing everything he can pull out of his brain to get her into remission.
Speaking of inspirational... we got to Skype with mom last night. She looks GREAT. Really good. Still struggling with the pain issue, so she's going back to the pain clinic next week... but she just looked like normal mom. She'll be going in for a chemo treatment at home of Avastin and Cisplatin. I'm so glad her oncologist is going to continue the plan for her here. As far as Tykerb, insurance will not pay for it so it seems it will need to be purchased from Canada. Mom's scan should be in a few months.
Keeping you posted from coast-to-coast. Signing off (for now)....
While in Korea, we always wanted to know how she was doing. She's been through the wringer, emotionally and physically (I don't think ever, spiritually). After Cyberknife, various chemos, stem cells and gene therapy... her tumor has shrunk from the size of a small mango to the size of a nickel. I keep up on her (and a couple of other's) updates through CaringBridge every day.
There is nothing more inspirational than watching someone with a huge and mostly impossible battle before them... and see them do, fight and persevere every step of the way. What is happening with her, seems to be doing some good. She'd be quite the miracle if she actually beats her cancer (especially being that it's pancreatic). I know that Dr. Moon cares a great deal about her and I know that he is doing everything he can pull out of his brain to get her into remission.
Speaking of inspirational... we got to Skype with mom last night. She looks GREAT. Really good. Still struggling with the pain issue, so she's going back to the pain clinic next week... but she just looked like normal mom. She'll be going in for a chemo treatment at home of Avastin and Cisplatin. I'm so glad her oncologist is going to continue the plan for her here. As far as Tykerb, insurance will not pay for it so it seems it will need to be purchased from Canada. Mom's scan should be in a few months.
Keeping you posted from coast-to-coast. Signing off (for now)....
Friday, February 19, 2010
A Taste for Mandarin Oranges
They were plentiful at Novotel and now mom is craving them back at home. Yes, back at home!
She is feeling okay except for the persistent pain and being tired. She had another nerve block in a different place but it has had no effect thus far. Mom has seen her oncologist and was very cooperative although a bit tongue-in-cheek about the Korean adventure. Since Tykerb is not approved for lung cancer here in the States, she may have to order it from Canada. Now, why would the same drug here in the States be TWICE as much as in Canada? Yeah, there is nothing wrong with American pharmaceutical companies either. Alrighty then.
Mom's oncologist has set her up to continue the other Chemo drugs per Dr. Moon's schedule. It will (unfortunately) be awhile before she does a CT to see if there's any noticeable change.
Welcome back, Mom!
She is feeling okay except for the persistent pain and being tired. She had another nerve block in a different place but it has had no effect thus far. Mom has seen her oncologist and was very cooperative although a bit tongue-in-cheek about the Korean adventure. Since Tykerb is not approved for lung cancer here in the States, she may have to order it from Canada. Now, why would the same drug here in the States be TWICE as much as in Canada? Yeah, there is nothing wrong with American pharmaceutical companies either. Alrighty then.
Mom's oncologist has set her up to continue the other Chemo drugs per Dr. Moon's schedule. It will (unfortunately) be awhile before she does a CT to see if there's any noticeable change.
Welcome back, Mom!
Monday, February 8, 2010
Coming home soon
YES! Being excited is okay! This is GREAT stuff, here! Based on her tumor markers, she has improved a lot. The very bad part is that she just can't get that pain under control. I'm happy she will be coming home soon. Hopefully, nerve blockers or SOMETHING can help her.
She says that if she can figure out how to continue her treatments at home, she should be able to keep the cancer from metastasizing and if the IGRT was successful, the tumors in her lung should shrink like crazy. It takes a long time for adenocarcinoma to react to radiation so it could be months before we can tell if it was successful.
She is flying home next Saturday, February 13th.
Uwe and Cristal, I think I accidentally deleted your message. Thank you for your well wishes. You can read Jackie's posts at: www.caringbridge.org/visit/jackiewilks.
Until next time...
She says that if she can figure out how to continue her treatments at home, she should be able to keep the cancer from metastasizing and if the IGRT was successful, the tumors in her lung should shrink like crazy. It takes a long time for adenocarcinoma to react to radiation so it could be months before we can tell if it was successful.
She is flying home next Saturday, February 13th.
Uwe and Cristal, I think I accidentally deleted your message. Thank you for your well wishes. You can read Jackie's posts at: www.caringbridge.org/visit/jackiewilks.
Until next time...
Friday, February 5, 2010
Cancer Marker Results
Mom had a tough go of it a few days ago. She thinks it was probably the result of all the stuff they gave her Monday: "anti-nausea pill, hydration, antibiotic, antihistimine, diuretic, stem cells, cisplatin, allergic reaction test, a new vaccine, the old vaccine, and (as she says) the kitchen sink".
She met with Dr Cho a few days ago and at first he said she should come back and get a CT in 6 months. She asked if getting one in 10 days made any sense (what Dr Moon wants), and he said no it wouldn't show anything for 3 to 6 months. He believes all the pain is being caused by the tumor in the upper lobe pressing on the nerve fibers and it could take up to 6 months to get relief (she had gone to using 2 pain patches, but says it's not nearly enough). Then he came out to where they were sitting and asked how long she'd be in Korea. She said a week or 2 and he said she should stay and have a CT in a month. But mom is ready to come home and told Dr Moon that she wanted to talk to him about next steps. He said he wanted to wait until he sees the cancer markers so he had blood drawn.
Here are the tumor marker results:
CEA before 17 now 7 (normal <5)
CA72-4 was 4 now normal
CA15-3 was 33 now normal
NSE was 32 now normal
Whoa. I feel... happy. This is good, yes? Really good, right? Can I feel this? Is it okay to?
She met with Dr Cho a few days ago and at first he said she should come back and get a CT in 6 months. She asked if getting one in 10 days made any sense (what Dr Moon wants), and he said no it wouldn't show anything for 3 to 6 months. He believes all the pain is being caused by the tumor in the upper lobe pressing on the nerve fibers and it could take up to 6 months to get relief (she had gone to using 2 pain patches, but says it's not nearly enough). Then he came out to where they were sitting and asked how long she'd be in Korea. She said a week or 2 and he said she should stay and have a CT in a month. But mom is ready to come home and told Dr Moon that she wanted to talk to him about next steps. He said he wanted to wait until he sees the cancer markers so he had blood drawn.
Here are the tumor marker results:
CEA before 17 now 7 (normal <5)
CA72-4 was 4 now normal
CA15-3 was 33 now normal
NSE was 32 now normal
Whoa. I feel... happy. This is good, yes? Really good, right? Can I feel this? Is it okay to?
Monday, February 1, 2010
BFF Field Report for January 29 (edited to exclude other patient info)
Thank you for your report!!
This message is being sent from the roaming field reporter, not the patient.
Yesterday Jan 29 your Mom had stem cell and protein drip and she had her vaccine shot so she does not have to attend clinic session Saturday morning. Yahoo. After the clinic your Mom had radiation treatment number 13, 2 to go, big yippee. After radiation Mr Mok brought us to the hosptial to see Jackie. Joe and Erika leave tomorrow morning.
Today at noon Mr Mok is taking 8 of us to a buddhist temple..
This is the way it is signing out for today.
This message is being sent from the roaming field reporter, not the patient.
Yesterday Jan 29 your Mom had stem cell and protein drip and she had her vaccine shot so she does not have to attend clinic session Saturday morning. Yahoo. After the clinic your Mom had radiation treatment number 13, 2 to go, big yippee. After radiation Mr Mok brought us to the hosptial to see Jackie. Joe and Erika leave tomorrow morning.
Today at noon Mr Mok is taking 8 of us to a buddhist temple..
This is the way it is signing out for today.
Friday, January 29, 2010
She's not a cancer patient but she plays one on TV
Mom, you are doing great. Keep putting one foot in front of the other. An additional week or so is not so bad. It gives you some extra time to learn more Korean than just "hello". Speaking of which, I have given your second-oldest granddaughter all of my remaining won and coins. She actually has two piggy banks completely full of big cash and says she is going to use it for college. Any leftover and she'll buy college books. See how it works when you tell a child, from newborn to ten years-old, that they ARE going to college? Now she says she wants to be a politician... oh and fashion designer. I can just see the White House now in thirty years.
The person I was having that "conversation" with (as noted in my last post) seems to have backed-off. Why anyone would think that South Korea is a third world country is beyond me. After listing each un and ill informed question from that person with facts seems to have helped. I truly hope that this all will end up in medical history someday. That doctor from Korea who found the way to cure disease and illness.
Let me change my self-questioning and any past doubt to: THIS WILL WORK.
This should not be because we couldn't find a reason not to go to Korea for this treatment. This should be because THE FIND A CURE FOR CANCER WORLD TOUR - SOUTH KOREA 2010 means something. It means that there was enough information we could sink our teeth into and make an informed decision. It means that after you keep putting one foot in front of the other... you move... you get somewhere. And after all that you have been through (and are still going through), you haven't stopped. You know the destination and that's why you keep going. A lot of mountains have been climbed and a lot of journeys traveled down unknown paths. The difference between those who have the courage to do those things and you?
Nothing.
Well...
I am reading the CaringBridge updates from Dawn, Jackie, James and John everyday. So wishing the best for everyone there. Please give Jackie a hug from me.
Have you finished watching all of your Boston Legal DVD's yet?
Much love from your family in California!!
Here is the Tshirt you will have to wear when you get back...
The person I was having that "conversation" with (as noted in my last post) seems to have backed-off. Why anyone would think that South Korea is a third world country is beyond me. After listing each un and ill informed question from that person with facts seems to have helped. I truly hope that this all will end up in medical history someday. That doctor from Korea who found the way to cure disease and illness.
Let me change my self-questioning and any past doubt to: THIS WILL WORK.
This should not be because we couldn't find a reason not to go to Korea for this treatment. This should be because THE FIND A CURE FOR CANCER WORLD TOUR - SOUTH KOREA 2010 means something. It means that there was enough information we could sink our teeth into and make an informed decision. It means that after you keep putting one foot in front of the other... you move... you get somewhere. And after all that you have been through (and are still going through), you haven't stopped. You know the destination and that's why you keep going. A lot of mountains have been climbed and a lot of journeys traveled down unknown paths. The difference between those who have the courage to do those things and you?
Nothing.
Well...
I am reading the CaringBridge updates from Dawn, Jackie, James and John everyday. So wishing the best for everyone there. Please give Jackie a hug from me.
Have you finished watching all of your Boston Legal DVD's yet?
Much love from your family in California!!
Tuesday, January 26, 2010
So.
~
Monday, January 25, 2010
Update
Friday, January 15, 2010
Day Twenty-Five
It began to snow this morning (weather report finally right). As much as it's pretty when it does snow, we all dread it for fear it means taking the subway to KCCH. Thankfully, it let up and Mr. Mok drove us over.
This morning at the clinic, mom received stem cells and a protein drip. Poor thing just doesn't have much in the way of good veins anymore. In the past four weeks, she has had approximately 5 days without any needles.
This is a picture of mom with Mr. Won from this morning. I think he said he is 26. Looks young, doesn't he? He handles all blood harvesting as well as makes individual vaccines.
Mom, Dawn, Dave and I were later picked up from the hotel by Mr. Mok at 2:40 pm and swung by Goodgene to pick up Dr. Moon and dropped him off at home on the way in. Sitting in the car with Dr. Moon was very interesting. He did talk about opening up a clinic in the US (near Alexandria in Louisiana) on an Indian Reservation. The problem there is that they would be at the behest of the tribe Chief. If he said "go", they would need to go. The back-up then is in the Bahamas. He has already been approved by the government there. Third back-up is in Cabo San Lucas.
Mom asked him about radiation therapy, as it is used greatly in conjunction with stem cells and chemo. He said that mostly standard radiation is used in the States but in South Korea, it can be modified. If a patient would be in need of a specialized radiation therapy (i.e. Cyberknife, etc), they could come to Korea for that as it would only be for a short time (as opposed to being here for approx. 7 to 12 weeks as most patients need to be). Also, if he is centrally located, he can refer patients to one of the three Mayo clinics. He's hoping this Spring.
At KCCH, both mom and Dawn got their IGRT treatments. This was mom's third. Only twelve more to go!
Tonight is my last night in Korea. I'll miss my mom. We haven't spent this much time together since I was 17. But I'm looking forward to seeing her again this June for my oldest daughter's 10th birthday. Hang in there, mom. Remember all that you've gone through already. Just a few weeks more! It will go by quickly.
I hope you'll hear the echo of my voice and the swish of my pom-pom's cheerleading you on. I love you, mom.
Goodbye South Korea.
Goodbye my Magic Window. I've watched the traffic, red neon crosses and snowflakes... and thought about life and family gazing out of this window.
Will update soon.
This morning at the clinic, mom received stem cells and a protein drip. Poor thing just doesn't have much in the way of good veins anymore. In the past four weeks, she has had approximately 5 days without any needles.
This is a picture of mom with Mr. Won from this morning. I think he said he is 26. Looks young, doesn't he? He handles all blood harvesting as well as makes individual vaccines.
Mom, Dawn, Dave and I were later picked up from the hotel by Mr. Mok at 2:40 pm and swung by Goodgene to pick up Dr. Moon and dropped him off at home on the way in. Sitting in the car with Dr. Moon was very interesting. He did talk about opening up a clinic in the US (near Alexandria in Louisiana) on an Indian Reservation. The problem there is that they would be at the behest of the tribe Chief. If he said "go", they would need to go. The back-up then is in the Bahamas. He has already been approved by the government there. Third back-up is in Cabo San Lucas.
Mom asked him about radiation therapy, as it is used greatly in conjunction with stem cells and chemo. He said that mostly standard radiation is used in the States but in South Korea, it can be modified. If a patient would be in need of a specialized radiation therapy (i.e. Cyberknife, etc), they could come to Korea for that as it would only be for a short time (as opposed to being here for approx. 7 to 12 weeks as most patients need to be). Also, if he is centrally located, he can refer patients to one of the three Mayo clinics. He's hoping this Spring.
At KCCH, both mom and Dawn got their IGRT treatments. This was mom's third. Only twelve more to go!
Tonight is my last night in Korea. I'll miss my mom. We haven't spent this much time together since I was 17. But I'm looking forward to seeing her again this June for my oldest daughter's 10th birthday. Hang in there, mom. Remember all that you've gone through already. Just a few weeks more! It will go by quickly.
I hope you'll hear the echo of my voice and the swish of my pom-pom's cheerleading you on. I love you, mom.
Goodbye South Korea.
Goodbye my Magic Window. I've watched the traffic, red neon crosses and snowflakes... and thought about life and family gazing out of this window.
Will update soon.
Thursday, January 14, 2010
Day Twenty-Four
Mom woke up fever-free and feeling alright. Looks like the Tylenol PM worked well. At the clinic, mom had a vaccine shot and a protein drip. Here is a photo at the clinic today of just about everyone (lt to rt: Mom, Nurse Moon, Debbie, Jeff, Mi-Yan, Dawn, Jackie, Tom, Yu-Jin. back row. Dos, Dave, Bryan). We're missing Joe, his wife Erika, Mr. Won and the elusive Dr. Moon.
The Moon Crew Dec09/Jan10.
Well, we got all the way down to KCCH this afternoon only to find out that the radiation machine was still not working. A waste of a 70,000 won taxi trip and 2.5 hours. Oh well. It's better than getting radiated by an ill-tempered piece of equipment.
The health system seems so strange here. There is health insurance but you have to have a family member wheel you around on your gurney... and stay with you in your room because they won't admit you without help. If you want to shower, you have to bring your own soap and towels. If you want to walk around in the hospital lobby... no problem, just be sure you don't let strangers step on your IV tube. I watched a woman pushing someone in a wheelchair right over the foot of someone with a medical boot on that foot. He yelled and yelled at that woman. This was inside of an elevator. And when you are brought pills by the nurse, they won't bring you water or anything to swallow them with. So, be sure you bring your own water.
In the States, hospitals charge a fortune so we expect more. We expect more so the hospitals charge a fortune. It's a never-ending cycle. As far as I'm concerned, no one has this health care business right. No one.
I can hardly believe I'm leaving in just two days. When mom's pal takes over, she'll email me from time-to-time, which I will post updates here. And, of course, any news on how this treatment is working.
TTFN!
The Moon Crew Dec09/Jan10.
Well, we got all the way down to KCCH this afternoon only to find out that the radiation machine was still not working. A waste of a 70,000 won taxi trip and 2.5 hours. Oh well. It's better than getting radiated by an ill-tempered piece of equipment.
The health system seems so strange here. There is health insurance but you have to have a family member wheel you around on your gurney... and stay with you in your room because they won't admit you without help. If you want to shower, you have to bring your own soap and towels. If you want to walk around in the hospital lobby... no problem, just be sure you don't let strangers step on your IV tube. I watched a woman pushing someone in a wheelchair right over the foot of someone with a medical boot on that foot. He yelled and yelled at that woman. This was inside of an elevator. And when you are brought pills by the nurse, they won't bring you water or anything to swallow them with. So, be sure you bring your own water.
In the States, hospitals charge a fortune so we expect more. We expect more so the hospitals charge a fortune. It's a never-ending cycle. As far as I'm concerned, no one has this health care business right. No one.
I can hardly believe I'm leaving in just two days. When mom's pal takes over, she'll email me from time-to-time, which I will post updates here. And, of course, any news on how this treatment is working.
TTFN!
Tuesday, January 12, 2010
Day Twenty-Three
Hello out there. Well... mom woke up with a fever, stabbing back pain and overall achiness. Thankfully, after that 500 ML aspirin, her fever broke and felt a bit better. It was an easy day at the clinic as mom just received stem cells and protein. Unfortunately, we were notified that the radiation machine had some kind of problem and that her's and Dawn's appointments today were cancelled. It's possible it will be working again tomorrow or Friday. So, mom and I took a taxi straight to the movie theatre and watched Avatar (in English with Korean subtitles). Good movie. Now we're going to lay low for the rest of the evening. Mom won't lay down. She thinks she'll fall asleep if she does (I know... a good idea) but she doesn't want to risk a sleepness night so she'll wait awhile longer. It's a good night for Tylenol PM.
Day Twenty-Two
At the clinic, mom received a CK shot (to boost immunity), a vaccine shot, a shot to stimulate white blood cells (as radiation can deplete them) and a protein drip. I had my blood harvested. Afterwards, Mr. Mok took Jackie, Bryan, Mom and I to the Korea Cancer Center. Jackie's fever broke last night so she was able to continue Cyberknife today. Mom's 2nd IGRT treatment went as planned. So far, no side effects from yesterday's Cisplatin chemo but that can take a few days... fingers crossed. That's really it for today. We were back to the hotel by 5:15pm.
Here's a picture from inside of the KCCH (Korea Cancer Center Hospital). You need to take a number in order to pay for your visit/treatment.
Here's a picture from inside of the KCCH (Korea Cancer Center Hospital). You need to take a number in order to pay for your visit/treatment.
Monday, January 11, 2010
Day Twenty-One
It's been a 13-hour day.
It was off to the clinic an hour early this morning, so had to take a taxi. Luckily, we stopped the driver from taking us on a freeway in the opposite direction. We made it with just a few minutes of lost time.
Mom received an anti-naseau pill, along with two more (one for tonight and one for tomorrow morning). She was supposed to have two arms hooked up to an IV for the hydration fluids (2 - 500 ML bags N/S normal saline) but the right arm vein refused to participate so they had to use the vein in her hand (I hate those). Then, one arm was switched to stem cells... then Mannitol (says it "opens way for chemo") and another bag for hydration (1 - 500 ML bag H/D Hartmann's dex), an antihistamine, then the chemo (Cisplatin - 70 MG - half dose, 35 MG), and finally what is called "p53 gene therapy" via drip. This can cause a fever so they gave mom 500 MG of Bayer Aspirn in case one develops.
Mom, Jackie and Dawn all had to go to the Korea Cancer Center today (Jackie 2nd out of 3 Cyberknife treatments, Dawn CT scan and cradle-fitting for Wednesday's first of 12 IGRT treatments and mom's first day of 15 IGRT treatments).
Unfortunately, after we got there - Jackie delevoped chills and a fever (she also had the p53 gene therapy this morning). Cyberknife had to be canceled for her today and she had to go to St. Mary's Hospital in Doksan (same hospital that Erika is staying). So far, no fever for mom. Just a lovely 5 hours at the Cancer Center alone. Thank you Dawn and Dave for staying with us.
The day was long. It was also especially full of various treatments... stem cells, chemo, radiation and gene therapy. It's a lot for one person in one day. But the whole point is to concentrate on getting well. All there is to do all day long is to work at getting well. You look out of the window and say "yup, still in Korea" and go back to becoming well. It's a job. And like any job, do it to the best of your ability... and then give some more.
It was off to the clinic an hour early this morning, so had to take a taxi. Luckily, we stopped the driver from taking us on a freeway in the opposite direction. We made it with just a few minutes of lost time.
Mom received an anti-naseau pill, along with two more (one for tonight and one for tomorrow morning). She was supposed to have two arms hooked up to an IV for the hydration fluids (2 - 500 ML bags N/S normal saline) but the right arm vein refused to participate so they had to use the vein in her hand (I hate those). Then, one arm was switched to stem cells... then Mannitol (says it "opens way for chemo") and another bag for hydration (1 - 500 ML bag H/D Hartmann's dex), an antihistamine, then the chemo (Cisplatin - 70 MG - half dose, 35 MG), and finally what is called "p53 gene therapy" via drip. This can cause a fever so they gave mom 500 MG of Bayer Aspirn in case one develops.
Mom, Jackie and Dawn all had to go to the Korea Cancer Center today (Jackie 2nd out of 3 Cyberknife treatments, Dawn CT scan and cradle-fitting for Wednesday's first of 12 IGRT treatments and mom's first day of 15 IGRT treatments).
Unfortunately, after we got there - Jackie delevoped chills and a fever (she also had the p53 gene therapy this morning). Cyberknife had to be canceled for her today and she had to go to St. Mary's Hospital in Doksan (same hospital that Erika is staying). So far, no fever for mom. Just a lovely 5 hours at the Cancer Center alone. Thank you Dawn and Dave for staying with us.
The day was long. It was also especially full of various treatments... stem cells, chemo, radiation and gene therapy. It's a lot for one person in one day. But the whole point is to concentrate on getting well. All there is to do all day long is to work at getting well. You look out of the window and say "yup, still in Korea" and go back to becoming well. It's a job. And like any job, do it to the best of your ability... and then give some more.
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