Thursday, October 07, 2004
PERIPHERAL NEUROPATHY (PN)
& RESTLESS LEG SYNDROME (RLS)
I'm adding information on treating Peripheral Neuropathy (PN), a tingling and numbness of the fingers and toes that can progress to shooting pains and in severe cases, make it difficult or impossible to walk or use your hands. This is typically a result of certain chemotherapies, most notably Thalidomide and/or Velcade, although there are a number of other causes.
This regimen is known as the Dana Farber Cancer Institute (DFCI) regimen, although it was actually put together by a physician at DFCI, and is not officially sanctioned by DFCI itself. It has worked well for me in reducing my PN and others have reported success in reducing the intensity as well. YOU SHOULD ALWAYS CHECK WITH YOUR ONCOLOGIST BEFORE EMBARKING ON ANY REGIMEN, INCLUDING THIS ONE. (Not ALL of the prescription medications will necessarily be needed; your doctor should assist you in determining which make sense in your individual case.) Please be advised I am NOT a doctor, and am NOT dispensing medical advice. CHECK FIRST WITH YOUR DOCTOR BEFORE UTILIZING THIS REGIMEN.
NEUROPATHY TREATMENTS
VITAMINS
Always take with food
*MULTI-B COMPLEX VITAMIN with B1, B6, B12 (at least 400mcg), folic acid and other
FOLIC ACID 1 to 2 mgFolate
B6 VITAMINS 50mg in AM, 100mg in PM
MAGNESIUM 250MG twice a daymay cause diarrhea in large doses
POTASSIUM 2 teaspoons Apple Cider VinegarBananas, Oranges
VITAMIN E 400 IU daily
*AMINO ACIDS can be obtained at Health Food Storesor Bread and Circus supermarkets. Take with food.
L- CARNITINE 500mg twice a day with food.Can take up to 2000mg a day. Acetyl-Carnitine is best if available.
ALPHA-LIPOIC ACID 400mg to 600mg a day with food
*L-GLUTAMINE Start with 10gms a day for 1 week,Then 1 gram 3 times a day with food.Dissolve in 8oz. Liquid.
MEDICATIONS - Prescription needed
NEURONTIN (gabapentin) Start with 100mg three times a day.Gradually work up to 600mg three times a day.*Can dose as high as 2700mg total dose with Physician permission. Neurontin comes in 100mg and 300mg pills. Use with extreme caution in doses above 1,200 mg/day total.
*ELAVIL (Amitriptyline) 25-50mg at bedtime.
*ZOLOFT(Sertraline) 50-100mg at bedtime.
*LIDODERM PATCH 5% 1 ½ patches to each area of pain. Remove after 12 hours each day.
MISCELLANEOUS
TONIC WATER (Quinine or Seltzer water)Drink one glass in evening and any other time cramping occurs.
CAPSAICIN CREAM (Zostrix) Over-the-counter in pharmacy.Apply to fingers or toes and feet once a day.
COCOA BUTTER (rich in Vitamin E and other emollients) Apply to affected area twice a day with gentle massage.
STEROID SYMPTOMS
*SEROQUEL 25mg at bedtime.
*RITALIN 5 to 10mg twice a day.
*ATIVAN .5 - 1mg before bedtime andevery 4 hours if needed for anxiety.
RESTLESS LEG SYNDROME (RLS)
I have a fairly severe case of RLS. My legs tend to "twitch" a fair amount when I get tired and while I am sleeping. You could also describe it as "flailing", with both my arms and legs. My doctor has prescribed Mirapex, which is a drug also used to treat Parkinson's Disease. I started out with .25mg per night, then bumped to .50 after several years. In the past year, I've found it necessary (with my doctor's blessing) to increase the dosage to 1mg per night. I generally take .5mg about 2 to 3 hours before going to bed, then take the remainingn .5 when I go to bed. My wife appreciates it, as it minimizes the bruising resulting from her being kicked while I sleep! AGAIN, CHECK WITH YOUR DOCTOR IF YOU HAVE OR THINK YOU HAVE THIS MALADY. MIRAPEX REQUIRES A PRESCRIPTION AND IS NOT PRESCRIBED LIGHTLY.
Sunday, January 04, 2004
FOR MORE INFORMATION ON MULTIPLE MYELOMA AND RECENT ADVANCES...
Please go to my Web site at www.caringbridge.org/ca/tomcourbat.
I am still planning to expand this "blog" significantly with info for veterans exposed to Agent Orange and for other patients with Multiple Myeloma and their caregivers. It just seems that time is so precious, and it gets spent on so many other things.
My apologies for the slow pace in creating this. Please check back every few weeks, and feel free to post comments to my Web site I have mentioned above.
Please go to my Web site at www.caringbridge.org/ca/tomcourbat.
I am still planning to expand this "blog" significantly with info for veterans exposed to Agent Orange and for other patients with Multiple Myeloma and their caregivers. It just seems that time is so precious, and it gets spent on so many other things.
My apologies for the slow pace in creating this. Please check back every few weeks, and feel free to post comments to my Web site I have mentioned above.
Friday, November 14, 2003
FURTHER INFORMATION TO FOLLOW SOON
I had hoped to update this much sooner and now plan further information in the next week or two. Please check again during that time. In the meanwhile, I hope the information below is helpful.
I had hoped to update this much sooner and now plan further information in the next week or two. Please check again during that time. In the meanwhile, I hope the information below is helpful.
Thursday, September 18, 2003
EXPOSURE TO AGENT ORANGE OUTSIDE OF VIETNAM
Until recently, the VA would grant compensation to veterans exposed to Agent Orange (AO) outside of Vietnam only if the claimant proved exposure to AO and provided a medical connection between the current disease and that exposure.
In an apparent effort to equalize the treatment of all veterans exposed to AO, the VA recently announced that if exposure outside of Vietnam were proven, and the veteran had one of the ten diseases presumed by law to be related to exposure to AO, the medical connection would be presumed and the claim granted unless there were other disqualifying factors. See comments on the final rule adding diabetes to the list of "AO diseases" in 38 C.F.R. § 3.309(e), at 66 Federal Register, page 23, 166 (May 8, 2001).
In addition, any veteran concerned about exposure to AO during use, manufacture, testing or transport outside of Vietnam, may be given an AO physical by the VA and added to the Agent Orange Registry (VHA Directive 2000-027).
The only real issue is proving exposure (all persons who served in Vietnam are presumed to have been exposed.) The VA is determining whether Department of Defense information is sufficient to add some non-Vietnam units to the presumptive exposure list, but none have been added as of June 2001. The following areas outside of Vietnam have been confirmed as places where AO was used:
1. The Korean demilitarized zone in 1968 and 1969 (extensive spraying).
2. Fort Drum, NY in 1959 (testing).
Other areas where veterans allege AO to have been sprayed include:
1. Guam from 1955 through 1960s (spraying).
2. Johnston Atoll (1972-1978) was used for unused AO storage.
3. Panama Canal Zone from 1960s to early 1970s (spraying).
AGENT ORANGE OUTSIDE OF VIETNAM
Information was previously provided regarding the use of Agent Orange in Korea along the DMZ, including the units in the area during the period in which Agent Orange was sprayed. Department of Defense (DoD) has provided a correction to two of the cited units. Previously reported as the 109th and 209th Infantry, those units were actually the 1/9th and 2/9th Infantry. A corrected listing of units follows: The four combat brigades of the 2nd Infantry Division: 1/38th Infantry, 2/38th Infantry, 1/23rd Infantry, 2/23rd Infantry, 3/23rd Infantry, 3/32nd Infantry, 1/9th Infantry, 2/9th Infantry, 1/72nd Armor, 2/72nd Armor, 4th/7th Cavalry.
3rd Brigade of the 7th Infantry Division: 1/17th Infantry, 2/17th Infantry, 1/73rd Armor, 2/10th Cavalry
DOD has stated that 21,000 gallons of Agent Orange were sprayed in Korea in 1968 and 1969 in an area from the Civilian Control Line to the southern boundary of the Demilitarized Zone. Only Republic of Korea troops were involved in the actual spraying of the herbicide Agent Orange in Korea. However, it is plausible that U.S. service members in the area near spraying operations may have been exposed to Agent Orange during this period. There were approximately 40,000 U.S. service members deployed annually in Korea in 1968 and 1969, with nearly 100 percent turnover each year, i.e., as many as 80,000 service members over the 2-year period.
VA currently offers through VA Medical Centers the Agent Orange Registry (AOR) examination to all United States veterans who served in Vietnam during the Vietnam War. Participating veterans are given baseline laboratory work-ups, with particular attention to those illnesses that VA presumptively links to Agent Orange exposure. The AOR examination has helped Vietnam War veterans by providing an entrance into VA health care, providing the opportunity for recording a comprehensive military history, and as a means of veteran outreach to share future developments and provide access to VAÂs Agent Orange Review newsletter.
VA may provide a veteran who served in the Korean Conflict in 1968 or 1969 with an AOR examination, consultation, and counseling, if the veteran requests participation in the AOR examination program. Accordingly, the benefits alluded to may likewise extend to these covered Korea veterans. In addition, VAÂs general outreach authority permits VA to notify veterans who served in Korea in 1968 or 1969 about the AOR examination program, and to include them in the DepartmentÂs AOR program updates and newsletters. Veterans seeking the AOR examination should contact the nearest VA Medical Center.
The Eleven Diseases Recognized by the VA as "Likely Caused by Exposure to Agent Orange"
VA Disability due to Agent Orange in Korea
I recently was granted 100% service-connected disability for exposure to Agent Orange in Korea. It only took 4 1/2 months from my application to my approval. I have Multiple Myeloma, a terminal bone marrow/blood cancer known by the VA to be caused by Agent Orange.
The military has admitted to spraying Agent Orange in Korea near the DMZ in the years 1968-1969. Many believe it was sprayed before and after that time, but they have ADMITTED to spraying it during those two years. If you have any of the following 11 diseases and were on or near the DMZ in 1968-69, you have an EXCELLENT CHANCE of getting a disability rating from the VA. There are, of course, NO GUARANTEES.
BEST ADVICE is to get a rep from the VVA, Viet Nam Vets of America (yes, they WILL help Korean vets exposed to AO), American Legion , Veterans of Foreign Wars (VFW) or Disabled American Vets (DAV) to represent you. They know a lot more about this than most of us individually, and they don't charge a dime to help you. If you call and they DON'T know about this, call another group!
Here are the 11 diseases that the VA has deemed "presumptively eligible" for vets exposed to Agent Orange (if in Korea in 1968-69 or anytime in the Viet Nam war).
1) Prostate Cancer
2) Multiple Myeloma
3) Non Hodgkin's Lymphoma
4) Hodgkin's Disease
5) Type II Diabetes
6) Peripheral Neuropathy
7) Chloracne
8) Porphyria Cutanea Tarda
9) 30 types of soft tissue sarcoma*
10) Lung, Larynx, Trachea & Bronchus cancer
11) Chronic Lymphocytic Leukemia
So, after you contact one of the above support groups, FILE A CLAIM WITH THE VA A.S.A.P. The effective date of your claim (if/when approved) will be the first of the month FOLLOWING the month you apply. So if it is close to the end of the month, file by the last day of the month. Otherwise, you will lose a month's worth of benefits.
BTW, these are 100% TAX FREE - no FEDERAL INCOME taxes are owed for these benefits (called "compensation" by the VA - NOT "pension" - don't confuse the two). Many states/counties also will waive the vehicle tax and/or some or all of the property taxes for 100% disabled vets. You may also commissarysary and BX/PX privileges, and a host of other benefits, including free medical, prescriptions, etc. for yourself and maybe your spouse.
WHAT ARE YOU WAITING FOR?? You won't get an invitation from the VA, so you must take the initiative yourself.
Best of luck to all of you!!
Tom Courbat
*The soft tissue sarcomas include the following:
1. Adult Fibrosarcoma
2. Alveolar Soft Part Sarcoma
3. Angiosarcoma
4. Clear Cell Sarcoma of Aponeuroses
5. Clear Cell Sarcoma of Tendons
6. Congenital Fibrosarcoma
7. Dermatofibrosarcoma Protuberans
8. Ectomesenchymoma
9. Epithelioid Malignant Leiomyosarcoma
10. Epithelioid Malignant Schwannoma
11. Epithelioid Sarcoma
12. Extraskeletal EwingÂs Sarcoma
13. Hemangiosarcoma
14. Infantile Fibrosarcoma
15. Leimyosarcoma
16. Liposarcoma
17. Lymphangiosarcoma
18. Malignant Fibrous Histiocytoma
19. Malignant Ganglioneuroma
20. Malignant Giant Cell Tumor of the Tendon Sheath
21. Malignant Glandular Schwannoma
22. Malignant Glomus Tumor
23. Malignant Granular Cell Tumor
24. Malignant Hemangiopericytoma
25. Malignant Mesenchymoma
26. Malignant Schwannoma with
27. Rhabdomyoblastic differentiation
28. Proliferating (systemic) Angiendotheliomatosis
29. Rhabdomyosarcoma
30. Synovial Sarcoma
Until recently, the VA would grant compensation to veterans exposed to Agent Orange (AO) outside of Vietnam only if the claimant proved exposure to AO and provided a medical connection between the current disease and that exposure.
In an apparent effort to equalize the treatment of all veterans exposed to AO, the VA recently announced that if exposure outside of Vietnam were proven, and the veteran had one of the ten diseases presumed by law to be related to exposure to AO, the medical connection would be presumed and the claim granted unless there were other disqualifying factors. See comments on the final rule adding diabetes to the list of "AO diseases" in 38 C.F.R. § 3.309(e), at 66 Federal Register, page 23, 166 (May 8, 2001).
In addition, any veteran concerned about exposure to AO during use, manufacture, testing or transport outside of Vietnam, may be given an AO physical by the VA and added to the Agent Orange Registry (VHA Directive 2000-027).
The only real issue is proving exposure (all persons who served in Vietnam are presumed to have been exposed.) The VA is determining whether Department of Defense information is sufficient to add some non-Vietnam units to the presumptive exposure list, but none have been added as of June 2001. The following areas outside of Vietnam have been confirmed as places where AO was used:
1. The Korean demilitarized zone in 1968 and 1969 (extensive spraying).
2. Fort Drum, NY in 1959 (testing).
Other areas where veterans allege AO to have been sprayed include:
1. Guam from 1955 through 1960s (spraying).
2. Johnston Atoll (1972-1978) was used for unused AO storage.
3. Panama Canal Zone from 1960s to early 1970s (spraying).
AGENT ORANGE OUTSIDE OF VIETNAM
Information was previously provided regarding the use of Agent Orange in Korea along the DMZ, including the units in the area during the period in which Agent Orange was sprayed. Department of Defense (DoD) has provided a correction to two of the cited units. Previously reported as the 109th and 209th Infantry, those units were actually the 1/9th and 2/9th Infantry. A corrected listing of units follows: The four combat brigades of the 2nd Infantry Division: 1/38th Infantry, 2/38th Infantry, 1/23rd Infantry, 2/23rd Infantry, 3/23rd Infantry, 3/32nd Infantry, 1/9th Infantry, 2/9th Infantry, 1/72nd Armor, 2/72nd Armor, 4th/7th Cavalry.
3rd Brigade of the 7th Infantry Division: 1/17th Infantry, 2/17th Infantry, 1/73rd Armor, 2/10th Cavalry
DOD has stated that 21,000 gallons of Agent Orange were sprayed in Korea in 1968 and 1969 in an area from the Civilian Control Line to the southern boundary of the Demilitarized Zone. Only Republic of Korea troops were involved in the actual spraying of the herbicide Agent Orange in Korea. However, it is plausible that U.S. service members in the area near spraying operations may have been exposed to Agent Orange during this period. There were approximately 40,000 U.S. service members deployed annually in Korea in 1968 and 1969, with nearly 100 percent turnover each year, i.e., as many as 80,000 service members over the 2-year period.
VA currently offers through VA Medical Centers the Agent Orange Registry (AOR) examination to all United States veterans who served in Vietnam during the Vietnam War. Participating veterans are given baseline laboratory work-ups, with particular attention to those illnesses that VA presumptively links to Agent Orange exposure. The AOR examination has helped Vietnam War veterans by providing an entrance into VA health care, providing the opportunity for recording a comprehensive military history, and as a means of veteran outreach to share future developments and provide access to VAÂs Agent Orange Review newsletter.
VA may provide a veteran who served in the Korean Conflict in 1968 or 1969 with an AOR examination, consultation, and counseling, if the veteran requests participation in the AOR examination program. Accordingly, the benefits alluded to may likewise extend to these covered Korea veterans. In addition, VAÂs general outreach authority permits VA to notify veterans who served in Korea in 1968 or 1969 about the AOR examination program, and to include them in the DepartmentÂs AOR program updates and newsletters. Veterans seeking the AOR examination should contact the nearest VA Medical Center.
The Eleven Diseases Recognized by the VA as "Likely Caused by Exposure to Agent Orange"
VA Disability due to Agent Orange in Korea
I recently was granted 100% service-connected disability for exposure to Agent Orange in Korea. It only took 4 1/2 months from my application to my approval. I have Multiple Myeloma, a terminal bone marrow/blood cancer known by the VA to be caused by Agent Orange.
The military has admitted to spraying Agent Orange in Korea near the DMZ in the years 1968-1969. Many believe it was sprayed before and after that time, but they have ADMITTED to spraying it during those two years. If you have any of the following 11 diseases and were on or near the DMZ in 1968-69, you have an EXCELLENT CHANCE of getting a disability rating from the VA. There are, of course, NO GUARANTEES.
BEST ADVICE is to get a rep from the VVA, Viet Nam Vets of America (yes, they WILL help Korean vets exposed to AO), American Legion , Veterans of Foreign Wars (VFW) or Disabled American Vets (DAV) to represent you. They know a lot more about this than most of us individually, and they don't charge a dime to help you. If you call and they DON'T know about this, call another group!
Here are the 11 diseases that the VA has deemed "presumptively eligible" for vets exposed to Agent Orange (if in Korea in 1968-69 or anytime in the Viet Nam war).
1) Prostate Cancer
2) Multiple Myeloma
3) Non Hodgkin's Lymphoma
4) Hodgkin's Disease
5) Type II Diabetes
6) Peripheral Neuropathy
7) Chloracne
8) Porphyria Cutanea Tarda
9) 30 types of soft tissue sarcoma*
10) Lung, Larynx, Trachea & Bronchus cancer
11) Chronic Lymphocytic Leukemia
So, after you contact one of the above support groups, FILE A CLAIM WITH THE VA A.S.A.P. The effective date of your claim (if/when approved) will be the first of the month FOLLOWING the month you apply. So if it is close to the end of the month, file by the last day of the month. Otherwise, you will lose a month's worth of benefits.
BTW, these are 100% TAX FREE - no FEDERAL INCOME taxes are owed for these benefits (called "compensation" by the VA - NOT "pension" - don't confuse the two). Many states/counties also will waive the vehicle tax and/or some or all of the property taxes for 100% disabled vets. You may also commissarysary and BX/PX privileges, and a host of other benefits, including free medical, prescriptions, etc. for yourself and maybe your spouse.
WHAT ARE YOU WAITING FOR?? You won't get an invitation from the VA, so you must take the initiative yourself.
Best of luck to all of you!!
Tom Courbat
*The soft tissue sarcomas include the following:
1. Adult Fibrosarcoma
2. Alveolar Soft Part Sarcoma
3. Angiosarcoma
4. Clear Cell Sarcoma of Aponeuroses
5. Clear Cell Sarcoma of Tendons
6. Congenital Fibrosarcoma
7. Dermatofibrosarcoma Protuberans
8. Ectomesenchymoma
9. Epithelioid Malignant Leiomyosarcoma
10. Epithelioid Malignant Schwannoma
11. Epithelioid Sarcoma
12. Extraskeletal EwingÂs Sarcoma
13. Hemangiosarcoma
14. Infantile Fibrosarcoma
15. Leimyosarcoma
16. Liposarcoma
17. Lymphangiosarcoma
18. Malignant Fibrous Histiocytoma
19. Malignant Ganglioneuroma
20. Malignant Giant Cell Tumor of the Tendon Sheath
21. Malignant Glandular Schwannoma
22. Malignant Glomus Tumor
23. Malignant Granular Cell Tumor
24. Malignant Hemangiopericytoma
25. Malignant Mesenchymoma
26. Malignant Schwannoma with
27. Rhabdomyoblastic differentiation
28. Proliferating (systemic) Angiendotheliomatosis
29. Rhabdomyosarcoma
30. Synovial Sarcoma
INTRODUCTION
I was diagnosed with Multiple Myeloma (MM) following a surgical procedure to repair a badly damaged L3 vertebra on 9-26-01. I had been experiencing excruciating back pain the entire summer of 2001, so bad in fact, that I was bedridden 23 1/2 hours per day and was on very strong pain medications. As of this writing, it has now been nearly two years since I heard those three terrible words, "You have cancer"! More specifically, I learned I had a very RARE form of cancer - Multiple Myeloma or MM - that represents only 1% of all the cancers in the U.S. but 2% of all the cancer deaths. MM is a terminal but very treatable cancer of the bone marrow and blood. In March of 2003, I learned that the military had recently admitted to spraying Agent Orange (AO) in Korea, near the DMZ, during the two years I was stationed in Korea - 1968-69. In August 2003, the Department of Veterans Affairs (VA) awarded me 100% total and permanent disability (this is tax free!) due to my MM because of my exposure to AO. I was also awarded 100% disability from the Social Security Administration (SSA) for the debilitating effects of MM. I cannot participate in anything requiring sustained physical exertion (including housecleaning!) and I am typically fatigued and sometimes short of breath. On the brighter side, while I won't be able to go to work again (I'm 56 years old), I do enjoy visits from the grandchildren almost daily, and working on the computer.
For more information on my progress with this disease since March 2002, just click on Tom's Health Update Web site.
In this blog, I will provide as extensive as possible references and guidelines to help those newly diagnosed with MM. I will include many Web sites I have found to be helpful, specialty clinics and cancer centers throughout the U.S., doctors who specialize in MM, support organizations (both for those with MM and for Veterans who may have been exposed to AO and wish to explore filing a claim for disability). This will not spring up overnight, however, I hope to have a wealth of information on this blog within just a few days. Others are welcome to add other resources and suggestions they have found to be of value as well. I will begin posting later today or tomorrow, so stand by.
I was diagnosed with Multiple Myeloma (MM) following a surgical procedure to repair a badly damaged L3 vertebra on 9-26-01. I had been experiencing excruciating back pain the entire summer of 2001, so bad in fact, that I was bedridden 23 1/2 hours per day and was on very strong pain medications. As of this writing, it has now been nearly two years since I heard those three terrible words, "You have cancer"! More specifically, I learned I had a very RARE form of cancer - Multiple Myeloma or MM - that represents only 1% of all the cancers in the U.S. but 2% of all the cancer deaths. MM is a terminal but very treatable cancer of the bone marrow and blood. In March of 2003, I learned that the military had recently admitted to spraying Agent Orange (AO) in Korea, near the DMZ, during the two years I was stationed in Korea - 1968-69. In August 2003, the Department of Veterans Affairs (VA) awarded me 100% total and permanent disability (this is tax free!) due to my MM because of my exposure to AO. I was also awarded 100% disability from the Social Security Administration (SSA) for the debilitating effects of MM. I cannot participate in anything requiring sustained physical exertion (including housecleaning!) and I am typically fatigued and sometimes short of breath. On the brighter side, while I won't be able to go to work again (I'm 56 years old), I do enjoy visits from the grandchildren almost daily, and working on the computer.
For more information on my progress with this disease since March 2002, just click on Tom's Health Update Web site.
In this blog, I will provide as extensive as possible references and guidelines to help those newly diagnosed with MM. I will include many Web sites I have found to be helpful, specialty clinics and cancer centers throughout the U.S., doctors who specialize in MM, support organizations (both for those with MM and for Veterans who may have been exposed to AO and wish to explore filing a claim for disability). This will not spring up overnight, however, I hope to have a wealth of information on this blog within just a few days. Others are welcome to add other resources and suggestions they have found to be of value as well. I will begin posting later today or tomorrow, so stand by.
