helping

danker
danker Member Posts: 1,276 Member

 

I have just been  reading articles in FORBES about Giving.  To give to the american cancer society is good.  But where do the funds go?

I hope not a raise for the executive director!!  It has been my experience that the real help is one on one.  To give some financial help to the cancer patient who cannot afford the test their doctor  recommends. is true charity that has some effect.  I try to do this myself and hope more of us will also consider it.  My blessing on you all, and hope for a NED future.

 

Comments

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    I agree

    I too prefer to give on a more individual basis, so that I can be sure it is providing some help rather than being reduced by over-head cost of some organization.

    There are very few charitable organizations which use 100% of donations for aid.

    Marie who loves kitties

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    1 to 1, true best

    I agree with the one on one, but more on shared experience and insight.  

    A lot of standard oncology for colon cancer is obsolete or indifferent, missing life critical options already known or knowable on days 1 and 2.   The biggest problem is intelligently applying what is known, from the start because we are not hearing the cheap modern stuff or other options at the hospital, or from oncologists.  Actually, since a lot of initial diagnosis is at the gastroenterologist's office, GI drs deserve more attention (and blame) on both the vitamin D3 and the cimetidine-CA19-9 connections.     

    Usually fatal cancer doesn't even have to be expensive to survive better...  Imagine on that first day of stage III or IV diagnosis, if someone had said, "take these $10 of pills before surgery (with few side effects), then keep doing that if CA19-9 tissue positive (the common CRC version most likely to recur and die sooner), you'll probably live an extra 2-10 years and chemo will be much milder."

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    tanstaafl said:

    1 to 1, true best

    I agree with the one on one, but more on shared experience and insight.  

    A lot of standard oncology for colon cancer is obsolete or indifferent, missing life critical options already known or knowable on days 1 and 2.   The biggest problem is intelligently applying what is known, from the start because we are not hearing the cheap modern stuff or other options at the hospital, or from oncologists.  Actually, since a lot of initial diagnosis is at the gastroenterologist's office, GI drs deserve more attention (and blame) on both the vitamin D3 and the cimetidine-CA19-9 connections.     

    Usually fatal cancer doesn't even have to be expensive to survive better...  Imagine on that first day of stage III or IV diagnosis, if someone had said, "take these $10 of pills before surgery (with few side effects), then keep doing that if CA19-9 tissue positive (the common CRC version most likely to recur and die sooner), you'll probably live an extra 2-10 years and chemo will be much milder."

    What are the vitamin D3 and

    What are the vitamin D3 and the cimetidine-CA19-9 connections? I am fairly new on here and don't know what this means?

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member

    What are the vitamin D3 and

    What are the vitamin D3 and the cimetidine-CA19-9 connections? I am fairly new on here and don't know what this means?

    MIA

    Many advanced CRC patients are grossly vitamin D deficient, with years muscle, joint and bone pains, as well as other vitamin D related illnesses.  Stage II and III patients with both CEA and CA19-9 high, are likely to recur and die, where medical science strongly indicates that it is highly treatable with cimetidine when started early, before/around first surgery, for a year or so, with low dose chemo.  The japanese have papers for several kinds of stage IV cancer that show cimetidine's survival effect as a rough double, even without the biomarkers or more optimal chemo.   Dr: "Zzzzzzz".

  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    tanstaafl said:

    MIA

    Many advanced CRC patients are grossly vitamin D deficient, with years muscle, joint and bone pains, as well as other vitamin D related illnesses.  Stage II and III patients with both CEA and CA19-9 high, are likely to recur and die, where medical science strongly indicates that it is highly treatable with cimetidine when started early, before/around first surgery, for a year or so, with low dose chemo.  The japanese have papers for several kinds of stage IV cancer that show cimetidine's survival effect as a rough double, even without the biomarkers or more optimal chemo.   Dr: "Zzzzzzz".

    Vitamin D Research Paper

    Hi All,

    To continue the theme...I thought I'd share this research study that was written by Dr. Kimmie Ng - she was Rick's oncologist at Dana Farber, as well as a respected researcher in her field.  She told me that although Rick wouldn't benefit at his Stage, she told me that I should start taking Vit. D since it will help me keep the beast at bay.  I now take 4000 iu each day.  Anyway, the following is a link, but I also copied most of it below for your reading pleasure.  ;)

    Hugs,

    Cyn

    http://health.usnews.com/health-news/family-health/articles/2008/06/19/vitamin-d-may-promote-colon-cancer-survival

    THURSDAY, June 19 (HealthDay News) -- Colon cancer patients with high blood levels of vitamin D boost their survival odds by 48 percent, a new study suggests.

    Previous studies have indicated that high levels of vitamin D may reduce the risk of getting colon cancer by 51 percent, although other studies dispute that claim. But until now, no studies have looked at whether vitamin D could improve survival among people who already had the disease.

    "Vitamin D has been studied for many years, and there is a lot of data that it could be implicated in cancer pathogenesis," explained lead researcher Dr. Kimmie Ng, from the Dana-Farber Cancer Institute in Boston. "Vitamin D is involved a lot of things that can go wrong in cancer," she noted.

    According to Ng, the vitamin may improve survival in colon cancer patients by slowing the growth of tumor cells. It may also be involved in killing cancer cells and inhibiting the growth of blood vessels in tumors.

    The report is published in the June 20 edition of the Journal of Clinical Oncology.

    In the study, Ng's team collected data on 304 patients diagnosed with colon cancer between 1991 and 2002. These patients participated in either the Nurses Health Study or the Health Professionals Follow-Up Study.

    All those in the study had their vitamin D levels measured at least two years before being diagnosed with colon cancer.

    The patients' health was tracked until they died, or until 2005, whichever came first. During the follow-up period, 123 patients died, 96 of them from colon or rectal cancer, the researchers report.

    The team found that patients with the highest levels of vitamin D were 48 percent less likely to die from colon cancer or any other cause, compared with those with the lowest levels.

    For colon cancer alone, those with the highest vitamin D levels were 39 percent less likely to die, compared with those with the lowest levels of vitamin D, Ng's group found.

    Ng doesn't yet advocate vitamin D supplements as a means of preventing or treating cancer, however. "Definitive evidence that our results are due to vitamin D would require a randomized clinical trial," Ng said.

    Clinical trials are planned to determine if adding vitamin D to chemotherapy after surgery improves colon cancer survival, the researcher said.

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member

    Vitamin D Research Paper

    Hi All,

    To continue the theme...I thought I'd share this research study that was written by Dr. Kimmie Ng - she was Rick's oncologist at Dana Farber, as well as a respected researcher in her field.  She told me that although Rick wouldn't benefit at his Stage, she told me that I should start taking Vit. D since it will help me keep the beast at bay.  I now take 4000 iu each day.  Anyway, the following is a link, but I also copied most of it below for your reading pleasure.  ;)

    Hugs,

    Cyn

    http://health.usnews.com/health-news/family-health/articles/2008/06/19/vitamin-d-may-promote-colon-cancer-survival

    THURSDAY, June 19 (HealthDay News) -- Colon cancer patients with high blood levels of vitamin D boost their survival odds by 48 percent, a new study suggests.

    Previous studies have indicated that high levels of vitamin D may reduce the risk of getting colon cancer by 51 percent, although other studies dispute that claim. But until now, no studies have looked at whether vitamin D could improve survival among people who already had the disease.

    "Vitamin D has been studied for many years, and there is a lot of data that it could be implicated in cancer pathogenesis," explained lead researcher Dr. Kimmie Ng, from the Dana-Farber Cancer Institute in Boston. "Vitamin D is involved a lot of things that can go wrong in cancer," she noted.

    According to Ng, the vitamin may improve survival in colon cancer patients by slowing the growth of tumor cells. It may also be involved in killing cancer cells and inhibiting the growth of blood vessels in tumors.

    The report is published in the June 20 edition of the Journal of Clinical Oncology.

    In the study, Ng's team collected data on 304 patients diagnosed with colon cancer between 1991 and 2002. These patients participated in either the Nurses Health Study or the Health Professionals Follow-Up Study.

    All those in the study had their vitamin D levels measured at least two years before being diagnosed with colon cancer.

    The patients' health was tracked until they died, or until 2005, whichever came first. During the follow-up period, 123 patients died, 96 of them from colon or rectal cancer, the researchers report.

    The team found that patients with the highest levels of vitamin D were 48 percent less likely to die from colon cancer or any other cause, compared with those with the lowest levels.

    For colon cancer alone, those with the highest vitamin D levels were 39 percent less likely to die, compared with those with the lowest levels of vitamin D, Ng's group found.

    Ng doesn't yet advocate vitamin D supplements as a means of preventing or treating cancer, however. "Definitive evidence that our results are due to vitamin D would require a randomized clinical trial," Ng said.

    Clinical trials are planned to determine if adding vitamin D to chemotherapy after surgery improves colon cancer survival, the researcher said.

    Thanks for posting that, Cyn.

    Thanks for posting that, Cyn.  I think I will double my dose and take 4000 IU.

  • lilacbrroller
    lilacbrroller Member Posts: 412 Member
    Chelsea71 said:

    Thanks for posting that, Cyn.

    Thanks for posting that, Cyn.  I think I will double my dose and take 4000 IU.

    question

    question for all of you who are up to speed on this:  Do those of us with MCRC have some disorder/genetic flaw where our bodies have problems absorbing vitamin D (from food) or synthesizing it (via the skin)  well? Any linkages?

    I am an adult who can and does drink milk. Also, i eat a lot of cheese, yogurt, and other milk products.  I am the dairy queen. And I eat leafy green veggies.  Plus, for years, I took extra D and calcium supplements.  I'm out in the sun a lot, and even in the winter, I make a point of going outside for sunlight.

    I had a physical which led to my diagnosis, and I was also told that I needed to take vitamin D, and that I was low. Whaaaat?  How is that possible?

    I'm really curious because I don't think I could have done more to get vitamin D at that time, and yet my body registered low amounts. Even then I thought that was weird...

    Karin

  • danker
    danker Member Posts: 1,276 Member
    Vitamin D

    How did this thread on helping each other financially revert to a vitamin D discussion???

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    danker said:

    Vitamin D

    How did this thread on helping each other financially revert to a vitamin D discussion???

    Sorry

    Sorry your post got fundamentally changed into a whole other subject but agree that contributing to well known organizations is a blessing if you can afford it.  Thanks for your post.

    Kim

  • jen2012
    jen2012 Member Posts: 1,607 Member
    agreed
    I agree...giving to an individual is great...you know where the money is going. Ive become very skeptically of many charitable organizations.

    Ive thought of this a lot. If we are ever in the position, I'd love to do little things for folks in treatment. Buy a bunch of kindles and gift cards and leave them for patients. Arrange for manicure and/or hand massages for patients sitting thru chemo. Maybe talk to the social worker to pay off or down bills of someone struggling. Have thought it would be fun to have fundraisers to do something like this.

    You are a generous and thoughtful man that does make a difference!
  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    danker said:

    Vitamin D

    How did this thread on helping each other financially revert to a vitamin D discussion???

    Oops...

     

    Sorry Dan...when I saw the Vitamin D post it just reminded me of Dr. Ng and her research and I just had to share.  Guess I should have opened up a new post.  Sorry about that.  I was about to respond to you directly, but then my computer froze. I'm back up, so what I wanted to say was that I can only hope that the ACS provides a decent percentage of the donations to research.  Like others out here, I had inquired with them about helping with payments, but all we got was an offer to drive him to chemo treatments.  As to giving to others, well, yes, I try to do that every single day.  Maybe not always financially, since that's a touchy subject, but often emotionally through support, love and friendship.  Like this morning, when I gave a teapot that I never used to a co-worker since she loves tea, and a candle to another because she loved the scent.  My reward was seeing their faces light up and smile up at me.  So, has the cancer experience changed me? Oh yes, in so many ways - some good, some bad, but I try to be a better person each and every day.  That's the only gift that I can really offer people.

    All my best,

    Cynthia

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member

    question

    question for all of you who are up to speed on this:  Do those of us with MCRC have some disorder/genetic flaw where our bodies have problems absorbing vitamin D (from food) or synthesizing it (via the skin)  well? Any linkages?

    I am an adult who can and does drink milk. Also, i eat a lot of cheese, yogurt, and other milk products.  I am the dairy queen. And I eat leafy green veggies.  Plus, for years, I took extra D and calcium supplements.  I'm out in the sun a lot, and even in the winter, I make a point of going outside for sunlight.

    I had a physical which led to my diagnosis, and I was also told that I needed to take vitamin D, and that I was low. Whaaaat?  How is that possible?

    I'm really curious because I don't think I could have done more to get vitamin D at that time, and yet my body registered low amounts. Even then I thought that was weird...

    Karin

    wholly inadequate

    From what I've seen, there appears to be both less generation/absorption and more excretion.   All those vit D supplements pre 2006 were low for CRC, with a 200-400 iu RDA, often made from vit D2, which is considered to be roughly 1/3rd as potent, with some controversy and large imprecision. So conventional old supplements were still greatly inadequate.   The primary thing that saved us as kids in the 50-60s was playing outside.  People like us probably need to be thinking 4-10,000 for prevention, and even more for chemo- or immunotherapies.

    The story isn't done yet either, inadequate magnesium and vitamin K2 may cause problems for vit D too. 

     

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    danker said:

    Vitamin D

    How did this thread on helping each other financially revert to a vitamin D discussion???

    Probably my fault, on helping

    Probably my fault, on helping 1 on 1 non-monetarily.  If you can save 98% of the usual cost...

  • johnsnowden
    johnsnowden Member Posts: 20
    jen2012 said:

    agreed
    I agree...giving to an individual is great...you know where the money is going. Ive become very skeptically of many charitable organizations.

    Ive thought of this a lot. If we are ever in the position, I'd love to do little things for folks in treatment. Buy a bunch of kindles and gift cards and leave them for patients. Arrange for manicure and/or hand massages for patients sitting thru chemo. Maybe talk to the social worker to pay off or down bills of someone struggling. Have thought it would be fun to have fundraisers to do something like this.

    You are a generous and thoughtful man that does make a difference!

    ACS

    "The famous American Cancer Society (ACS), which reaps far more contributions ($848 million in 2005) than any other cancer charity that AIP covers, is only able to get 60% of its budget to program services not related to solicitations and receives a C+ grade from AIP".

    i got this from CharityWatch.org. Although i think a charity should only expend 5% on over head, what do i know about the realities of organised charity. And i certainly don't agree that CEOs of non-profits deserve multi-hundred thousand dollar salaries to "attract competent talent." There are plenty of brilliant administrators that will work wonderfully for 50k a year or less.

    This all being said, I am very grateful to ACS. I am very low income, unisured, and live an hour and a half from my onc and surgeon. ACS provided gas cards, 300 bucks, as well as soliciting donated lodging from hotels in my area that usually run 100-300 per night during my radiation and chemo. 

    Consult you oncology social worker or just ACS themselves. There was also a local group in my area, Palm Springs, that covers co-pays, or in my case, all expenses for radiation, surgery, and chemo. The Desert Cancer Foundation. real people who care and put their money where there mouth is. I love them. 

    I also loved the occasional chemo blanket, bracelet, or hug. They helped my heart a lot.

  • LindaK.
    LindaK. Member Posts: 506 Member
    Angels in disguise

    Dan, people like you are angels on earth.  I contacted many organizations for financial help with my husband's treatment.  We have insurance but the co-pays and prescriptions, doctor's appointments, etc. ran up very quickly.  I hate to complain since so many have it much worse.  I found NO help from any of the organizations.  I felt like I was begging, which I absolutely hated.  I went through a 20 minute phone interview with one place, giving them as much information as I felt comfortable and then the person said "Oh, this program ran out of money"  I felt humiliated.  Good thing I hadn't given them my husband's SS# as they had asked.  I wish the oncology centers had a liaison with the ACS or other organizations who can help to make this path a little more bearable.  My husband is unemployed and I work full time, but don't make much.  I just hate that this disease makes people lose their assets on top of their health.

    Thank you for sharing your kind ways.  I have completely changed my mind on the ACS donations I have always made.  We have a Relay for Life team here where I work and I talked them into changing the donation away from the ACS to specific groups.  I think it will help more people that way.

    Linda

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    Last week

    my brother restarted chemo. As he was sitting there talking to me and getting his IV of chemo, a woman came by with a small handmade pillow for him. It was obviously made with a lot of love and really touched my heart. People can be so wonderful! I just wanted to share this!  :)

  • danker
    danker Member Posts: 1,276 Member

    Last week

    my brother restarted chemo. As he was sitting there talking to me and getting his IV of chemo, a woman came by with a small handmade pillow for him. It was obviously made with a lot of love and really touched my heart. People can be so wonderful! I just wanted to share this!  :)

    uncle buddy

    It doesn't take a lot to be kind and generous to each other does it?  We should all help each other when and where we can !!!

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    danker said:

    uncle buddy

    It doesn't take a lot to be kind and generous to each other does it?  We should all help each other when and where we can !!!

    LOL

    Danker, You are so right. That little pillow put a smile on my brother's face. Seeing him smile warmed my heart.

    Lin