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Old 06-30-2010, 08:31 AM   #41
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Ten years ago, when I had my son, I had placental stem cells and cord blood harvested. If you, or anyone you know is pregnant, please encourage them to do so. Its a way to donate these much needed cells from something that usually just ends up in medical waste disposal.

http://stemcellumbilicalcordblood.com/
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Old 06-30-2010, 08:44 AM   #42
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Originally Posted by always2late View Post
Ten years ago, when I had my son, I had placental stem cells and cord blood harvested. If you, or anyone you know is pregnant, please encourage them to do so. Its a way to donate these much needed cells from something that usually just ends up in medical waste disposal.

http://stemcellumbilicalcordblood.com/
Thank you for that link, I'd forgotten about cord blood.
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Old 07-02-2010, 11:45 AM   #43
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Default be the match

i did my swabs and sent them off
i would be glad to help someone out
@
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Old 07-11-2010, 07:53 PM   #44
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Okay so a good friend of mine pointed out that when
you go to the apply for the swab kit,
the myeloma foundation wil ask you
for money, it's asking for a donation.
You in no way have to donate to obtain a kit
just click continue to proceed and at the end process
it will ask again if you would like to donate,
you can opt out and you will still receive the kit.
After all the greatest gift you can give is simply
by being tested.
Thanks Wolfy for pointing this out
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Old 07-16-2010, 12:30 AM   #45
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Default Advocate

Wanted to share this experience here, in case it may help
someone else out.
You are your family members best advocate, especially if they cannot
voice their issues or concerns at this time.
If they've been told all avenues have been exhausted and the only road left is clinical trial.
Know that if the doctors want to keep you on even low dose chemo,
that can diqualify you from most trials. Ideally they like you to be
on a rest period first then start your trial.
When a cancer patient is already struggling with their diagnosis and the issues related to it,
you the caregiver are their best advocate.
A journal and planner have been my best friend throughout this fight.
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Old 05-26-2011, 01:33 PM   #46
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Default you never know, you can save a life

*~Bump~*
It isn't painful, it's on the same principle of donating blood.
It can save a life
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Old 05-26-2011, 01:44 PM   #47
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I just ordered my kit
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Old 08-30-2012, 09:47 AM   #48
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Default BUMPING


Multiple Myeloma Prognosis
Multiple myeloma prognosis depends on several factors that influence the outcome of this cancer. The following article will cover some information on the life expectancy of patients suffering from this cancer.




Transplant Survival Rates Important Info For Transplant Patients - Before and After Surgery www.TransplantExperience.com




The cancer that affects plasma cells in the bone marrow is called multiple myeloma cancer. It is also known as plasma cell myeloma and Kahler's disease. Abnormal number of plasma cells accumulate in bones and causes bone lesions. These bone lesions occur in the bone marrow. This causes interference in the production of normal blood cells.

What is the Prognosis for Multiple Myeloma?
The prognosis is a type of medical opinion that helps a patient learn about the course of disease. It helps patients learn their chances of surviving the cancer and the odds of recurrence. The prognosis depends on several factors that help determine the chances a patient has. These factors are as follows: •The extent to which the cancer has spread (stages of multiple myeloma)
•Multiple myeloma grade
•Patients age
•Patients general health
•Response to treatment
The prognosis depends on these factors. The doctors base their prognosis on information that has been collected by researchers over the years. Each patient is different, so will be their prognosis.

Life Expectancy
It depends on the above prognosis factors. Other than that, it also depends on, if a certain immunoglobulin is present in the blood, kidneys are damaged and the response to initial treatment. The treatments aim for preventing or relieving symptoms. It also helps destroy abnormal plasma cells and reduces the rate of disease progression. Multiple myeloma is an incurable disease therefore one can only hope to keep the progression of this disorder in check.

Life expectancy is about 5.1 years, in case of stage 1. The life expectancy for Stage 2 is approximately 3 to 4 years and in case of stage 3 the life expectancy reduces to 2 years. The prognosis without treatment shows poor survival rate. About 15% of patients with this disease die within 6 months without treatment.

Different Types of Multiple Myeloma
Myeloma is classified into two types; inactive and active disease. The active disease requires immediate treatment as the typical symptoms are exhibited by the patient. The stage 1 and stage 2 of this disorder fall under the symptomatic or active disease. Inactive disease is asymptomatic in nature. The different subtypes of inactive disease include Monoclonal Gammopathy of Undetermined Significance (MGUS), Smoldering Multiple Myeloma (SMM), Indolent Multiple Myeloma (IMM) and stage I disease.

Monoclonal Gammopathy of Undetermined Significance (MGUS) is a condition where abnormal monoclonal protein is present in the blood. This condition is benign, and has no health complications. However, in some cases, the condition progresses to some form of cancer. The Monoclonal Gammopathy of Undetermined Significance prognosis shows the risk of progressing to multiple myeloma to about 1 percent per year.

Smoldering myeloma is a slow-growing type. It is an asymptomatic cancer that is seen in people with different types of myeloma. Certain white blood cells are affected, that causes them to make too much of monoclonal protein. The Smoldering Multiple Myeloma prognosis depends on the levels of plasma cells in the bone marrow and M protein in serum. Those patients with less than 10% plasma cells and more the 3 g/dL of M protein in serum show a median progression time of about 19 years. Those with more than 10% percent plasma cells and more than 3 g/dL serum M protein have a progression time of 2 years. However, there are chances that Smoldering Multiple Myeloma never reaches the symptomatic stage.

Indolent Multiple Myeloma life expectancy is calculated to about 10 years after diagnosis. The prognosis without treatment is said to be about 6 months. Stage I is comparatively very good, especially in cases where patient is young and healthier. The stage I multiple myeloma life expectancy is estimated to be about 62 months. Stage II survival rate is estimated to be about 44 months and stage II has a life expectancy of just 29 months.

With the advancement in medical technology, life expectancy for different forms of cancers is improving. Also, better palliative care and holistic multiple myeloma treatment approach is making lives of cancer patients better. The 5 year survival rate is about 35%. One should keep in mind as everyone is different, so is the prognosis different in different cases.
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Old 08-30-2012, 09:49 AM   #49
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How is multiple myeloma staged?


Staging is the process of finding out how much the cancer has advanced. It is important for treatment options and prognosis. Prognosis is a prediction of the course of disease—the outlook for the chances of survival. Knowing all you can about staging lets you take a more active role in making informed decisions about your treatment.

Multiple myeloma may be staged using the Durie-Salmon system. Although some doctors use this system, its value is becoming limited because of newer diagnostic methods. Recently, a new staging system called the International Staging System for Multiple Myeloma has been developed. It relies mainly on levels of albumin and beta-2-microglobulin in the blood. Other factors that may be important are kidney function, platelet count and the patient's age.

The Durie-Salmon staging system

This system is based on 4 factors:
• The amount of abnormal monoclonal immunoglobulin in the blood or urine: Large amounts of monoclonal immunoglobulin indicate that many malignant plasma cells are present and are producing that abnormal protein.
• The amount of calcium in the blood: High blood calcium levels are also related to advanced bone damage. Because bone normally contains lots of calcium, bone destruction releases calcium into the blood.
• The severity of bone damage based on x-rays: Multiple areas of bone damage seen on x-rays indicate an advanced stage of multiple myeloma.
• The amount of hemoglobin in the blood: Hemoglobin is the substance in red blood cells that carries oxygen. Low hemoglobin levels indicate that the myeloma cells occupy much of the bone marrow and that not enough space is left for the normal marrow cells that produce red blood cells.

This system uses these factors to divide myeloma into 3 stages. Stage I indicates the smallest amount of tumor, and stage III indicates the largest amount of tumor:

Stage I

A relatively small number of myeloma cells are found. All of the following features must be present:
• Hemoglobin level only slightly below normal (still above 10 g/dL)
• Bone x-rays appear normal or show only 1 area of bone damage
• Normal blood calcium levels (less than 12 mg/dL)
• Relatively small amount of monoclonal immunoglobulin in blood or urine

Stage II

A moderate number of myeloma cells are present. Features are between stage I and stage III.

Stage III

A large number of myeloma cells are found. One or more of the following features must be present:
• Low hemoglobin level (below 8.5 g/dL)
• High blood calcium level (above 12 mg/dL)
• 3 or more areas of bone destroyed by the cancer
• Large amount of monoclonal immunoglobulin in blood or urine

The International Staging System

This system divides myeloma into 3 stages based only on the serum beta-2 microglobulin and serum albumin levels.

Stage I

Serum beta-2 microglobulin is less than 3.5 (mg/L) and the albumin level is above 3.5 (g/L)

Stage II

Neither stage I or III, meaning that either:
• The beta-2 microglobulin level is between 3.5 and 5.5 (with any albumin level),

OR
• The albumin is below 3.5 while the beta-2 microglobulin is less than 3.5

Stage III

Serum beta-2 microglobulin is greater than 5.5.

Other factors that affect survival

Kidney function

The blood creatinine (Cr) level shows how healthy the kidneys are. Kidneys eliminate this chemical from the body. When they are damaged by the monoclonal immunoglobulin, blood creatinine levels rise, predicting a worse outlook.

Age

Age is also important. In the studies of the international staging system, older people with myeloma do not live as long.

Labeling index

The myeloma cell labeling index, sometimes called the plasma cell labeling index, indicates how fast the cancer cells are growing. This test is done in specialized labs, using myeloma cells from bone marrow samples. A high labeling index can predict a more rapid accumulation of cancer cells and a worse outlook.

Chromosome studies

The bone marrow may be sent for tests to look at the chromosomes in the malignant cells. Certain chromosome changes can indicate a poorer outlook. For example, changes in chromosome 13 will lower the chances for survival. Another genetic abnormality that predicts a poor outcome is an exchange of material from chromosomes 4 and 14. This is called a translocation.

Last Medical Review: 08/04/2011
Last Revised: 07/24/2012

http://www.cancer.org/Cancer/Multipl...yeloma-staging
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Old 08-30-2012, 10:02 AM   #50
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Have you ever considered becoming a donor?
Think of the life you could save, so many people need donors
and are unable to find a match, what if you were a match?
http://www.marrow.org/JOIN/Join_Now/join_now.html
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Old 08-30-2012, 01:36 PM   #51
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I have been on the bone marrow registry for quite some time now and last week was contacted that I may be a match for someone. Sadly after I told them my IBS has been flaring up and they needed to know that before we went any further, I was told that I have to be free of flare ups for at least a year. I don't see where this is ever going to be possible because I have some really bad flare ups a few times a year. I wonder why they never said that to me when I first signed up and sent my info to them. I'm really bummed that I could have helped someone and they won't let me
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Old 08-30-2012, 01:40 PM   #52
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i would love to be a donor but am excluded due to my medical conditions (i am listed as an organ donor though). i definitely encourage others who can to donate. i wish i could.
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Old 08-30-2012, 01:46 PM   #53
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Been on the registry for years,was a partial match for lil sis, And for unk person.

Wished i was a complete match.
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Old 08-30-2012, 04:29 PM   #54
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Originally Posted by WolfyOne View Post
I have been on the bone marrow registry for quite some time now and last week was contacted that I may be a match for someone. Sadly after I told them my IBS has been flaring up and they needed to know that before we went any further, I was told that I have to be free of flare ups for at least a year. I don't see where this is ever going to be possible because I have some really bad flare ups a few times a year. I wonder why they never said that to me when I first signed up and sent my info to them. I'm really bummed that I could have helped someone and they won't let me
Really?! IBS disqualifies a person from becoming a donor? I had considered signing up to become a donor, but I'm constantly affected by IBS. What's the justification for excluding those of us with this condition?
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Old 08-30-2012, 06:10 PM   #55
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Originally Posted by CherylNYC View Post
Really?! IBS disqualifies a person from becoming a donor? I had considered signing up to become a donor, but I'm constantly affected by IBS. What's the justification for excluding those of us with this condition?

The email didn't say what the justification was. just said I need to be flare up free for a year.

This as those who have IBS, know that, that isn't possible.
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Old 08-30-2012, 06:30 PM   #56
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Originally Posted by CherylNYC View Post
Really?! IBS disqualifies a person from becoming a donor? I had considered signing up to become a donor, but I'm constantly affected by IBS. What's the justification for excluding those of us with this condition?
they have a huge list on their websites of conditions, disabilities, or life choices that exclude someone from donating (i'm like 3 for 3 i think, LOL). many of them don't seem (to me at least) to make a lot of sense. they don't have to give any justification, though.
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Old 08-30-2012, 06:30 PM   #57
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Funny I should run across this thread today. Over the weekend, I found a pack of bandaids at the pharmacy that included a kit for sending in a sample of your blood (when you've cut yourself anyway) to see if you might be a match for someone for a bone marrow donor.

I'd never considered, but I think if I was a match to someone, I'd definitely donate. So, hit up your local walgreens/cvs. they're only like $3, or mine was on sale for 99 cents.
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Old 08-31-2012, 06:46 AM   #58
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Really?! IBS disqualifies a person from becoming a donor? I had considered signing up to become a donor, but I'm constantly affected by IBS. What's the justification for excluding those of us with this condition?
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I have been on the bone marrow registry for quite some time now and last week was contacted that I may be a match for someone. Sadly after I told them my IBS has been flaring up and they needed to know that before we went any further, I was told that I have to be free of flare ups for at least a year. I don't see where this is ever going to be possible because I have some really bad flare ups a few times a year. I wonder why they never said that to me when I first signed up and sent my info to them. I'm really bummed that I could have helped someone and they won't let me
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Eagle Spirit has chemo today, so i'll ask what the reason is and they let you know. It might have to do with the injections to produce more stem cells as it can cause discomfort and possibly bowel distubance for a few days. At any rate we and others appreciate that you even tried to donate.
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Old 08-31-2012, 07:27 PM   #59
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We spoke to the hematology oncologist today regarding the stem cell donations and the pre exsisting condition policy, as for the IBS issue it's as i thought the neupogen injections that are given to produce excessive stem cells can also cause some bowel disturbance if you're in a flare up the pain can be worse hence the year free of IBS. Again we all appreciate that those who were so willing to be tested
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Old 08-31-2012, 07:36 PM   #60
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We spoke to the hematology oncologist today regarding the stem cell donations and the pre exsisting condition policy, as for the IBS issue it's as i thought the neupogen injections that are given to produce excessive stem cells can also cause some bowel disturbance if you're in a flare up the pain can be worse hence the year free of IBS. Again we all appreciate that those who were so willing to be tested
Thanks for the update. I didn't qualify.....
I had one of the cancer's not acceptable, even though it's been 8 years.
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