[lindajo]

I didn’t mean to suggest that I am against research, the new drugs that are out or people who make a decision to try taking the new drug treatments.

I believe that doctors and researchers get a bad rap when people make statements that they use patients as guinea pigs to make money.

I believe that they are dedicated professionals who are striving to find permanent relief for us. I just don’t want patients whose doctors recommend supportive care as a treatment alternative to feel like that recommendation is a doctors way of writing them off.

Many of the patients on this forum are new to the disease. They are overwhelmed with all of the terms and new language. I recommend that in making a decision about a doctors’ suggested treatment protocol that they keep an open mind about supportive care as an alternative. l also feel like they should research and keep an open mind about drugs and clinical trials.

100 years ago there wasn’t such a thing as insulin shots for diabetics. It took patients willing to try new things and yes being guinea pigs to bring that disease to a point where it is managable for most of those afflicted with it today. Someday I hope the same will be true for MDS patients. We need both avenues of treatment to wipe out this monster.

[lindajo]

I am so sorry that your son has join our ranks. The important thing to remember when you hear statistics and predictions for longeviety with this disease are those predictions are based on the average patient that is over 60 at diagnosis.

Someday through the national registry, better numbers might be available but really aren’t now.

I recommend that you also check out the Aplastic Anemia-Myeloydysplastic Foundation website. http://WWW.aplastic.org and the leukemia society website. They also have links to clinical trials and the centers of excellance for MDS.

There are more and more options for patients but first you need to know what type he has. Nutrition is extremely important as is exercise. Be sure and get a nutrionist and a trainer for him to work with, in addition to medical personnel.

We are all here whenever you need us. Good luck

[lindajo]

I recommend that you contact the Aplastic Anemia- Myelodysplastic Foundation and ask for a patient information packet. That is a separate organization from this one. I think their pamplets are the easiest for families and patients to understand. The web address is http://www.aplastic.org Their toll free phone number is 1-800-747-2820. Donations are always welcome but the information is free.

I have found over the 14 1/2 years that the each doctor has his or her own opinion about when a transfusion is necessary. Most that I have dealt with don’t go strictly by the numbers on the blood counts, but take into account the patient’s other conditions and the patients desire. In general I get one when my hemaglobin drops below 9. I also look to see if my hematocrit is stable or falling. If it is winter I get one sooner than if it is summer because I am exposed to more viruses and flus in the winter.

I always get irradiated and filtered blood, that is CVS negative because I am also still a candidate for a transplant.

Although family can donate blood at any time to put more blood units in the system, they don’t let me have blood that is specifically donated by family or friends. The reason that they don’t let family donate is because it increases the likelihood that I will reject a transplant. The reason they don’t take blood from friends directly for me is that they believe people are more likely to lie about their sexual history if they want to help a friend.

Any blood that is donated on your behalf helps to put more blood in the bank so there is unrelated donor blood for you.

All blood is screened for HIV/AIDS and hepatitis. Any Red Cross or blood bank can tell you what else the blood is screened for.

A transfusion is the fastest and possibly only way to raise the blood counts. I have taken numerous vitamin supplements over the years. It has kept me from dropping my counts and needing frequent transfusions, but once they get below nine the supplements haven’t been able to bring the counts back up.

Your mom will probably feel much better after she gets the blood, but I am surprised she is only getting one unit. I would ask the doctor why? Good Luck.

[lindajo]

As far as transfusions lasting, I have heard from other patients that it depends on how long the blood from the blood bank has before it expires.

Each unit has an expiration date or shelf life. The closer you are to that date, the less it will last when it gets into your body.

I don’t have any experience with fibrous marrow.

[lindajo]

My heart aches for you and your family. We can all take comfort that your lovely daughter is in a better place where she is now well.

I will pray for your healing from your grief. Lindajo

[lindajo]

Dave, We haven’t heard from you in awhile? How are you doing. I hope you are back on your feet.

[lindajo]

When I said a lack of oxygen going to the muscles, I should probably clarify. Your blood especially your red cells carry oxygen to the muscles. If they aren’t shaped correctly or there aren’t enough of them, you don’t get optimum oxygenation.

Your body goes into conserve mode and sends it where it is needed most. Most likely the brain and organs. The pain is just a message to slow down and let the bone marrow catch up on production. What has your partner been doing. More than usual because he was feeling better?

Have him slow down and give him a massage. Maybe it could be fun and beneficial for both of you.

[lindajo]

I have been on pain medication since 1995 for bone pain. It is part of MDS. The past two weeks I have had pain on the left side of the back near the kidney.

After numerous tests we determined that the MDS was just causing so much muscle pain from a lack of oxygen going to the muscles.

I also have scoliosis, a spine curvature. The MDS aggrevates the condition.

The pain medication I take is also given to cancer patients. I take Darvocet. Some days I don’t need any, other days I take up to 4 100mg tablets. It is one of the least addictive pain killers.

I have had tremendous relief from the back pain from a chiropractor and a massage therapist. You might try seeing someone like that. I also have heard good things about pain management centers. Good Luck.

[lindajo]

Sigit, How are you doing? How is your daughter? I didn’t mention that St. Judes’s will treat any child even if you don’t have the ability to pay.

The 20% that your doctors mentioned seems like a lower number than what I have heard. Have you looked at some statistics at the Leukemia Society?

You asked about supplements. I have taken many. Vitamin B-12 can be given in a shot or an oral absorbale form. I also took high dosages of Complex B vitamins( this includes Thiamin, Riboflavin, Niacin, Bitamin B6, Folic Acid and Biotin), Calcium, L-Tyrosine( an amino acid) , Omega 3 fatty acids and Vitamin E. I don’t know what you have available in your country. Make sure that a naturapathic or nutritionist reviews the dosages for her weight and age.

I also changed my diet. I don’t eat white flour, fried foods or dairy. I substitute soy products for milk. I also avoid most processed foods. Steamed vegatables and whole grain rice are very good. I also avoid processed sugars. I eat mostly lean meats, poultry and fish. I bake broil or steam these foods.

Write soon and let us know how you are.

[lindajo]

Don’t forget to use your state insurance department. You can probably find a toll free number in your yellow pages. They can explain what the company has to do. Many companies and policies do more than required.

I agree with Neil that a patient advocate at the center you go to is also a good resource. Good luck.

[lindajo]

Thanks for posting. It’s alwasys great when someone else is successful.

I had transfusions infrequently after the first two years. I am working on my 15th year. Your dad sounds like he will last a long time also.

[lindajo]

I went to the meeting today and found out too much to put in a post.

If you can attend a meeting in your area go. Things that will help confusion from abounding on this forum is as follows.

EACH STATE WILL HAVE DIFFERENT POLICIES AVAILABLE. YOU NEED TO LOOK AT WHAT PLANS YOUR STATE WILL BE OFFERING. FOR EXAMPLE; Kansas is probably going to approve 15 to 17 plans. To know the best policy for me I will have to look at the drugs I am taking (or might take) and look to see which plans cover them and what is the cost, in order to see which plan is best.

For my mother who has Alzheimers, what she takes is different so I will have to also research 15-17 plans for her.

Supplement D is going to be difficult to evaluate. Area agencies on aging might be able to help you with what is looking like a difficult decision.

It will be the middle of October here in Kansas before we know what plans will be offered.

The first date that you can enroll nationwide is November 15,2005 ( if you qualify for assistance in paying the Part D premium you can fill out that form now.) The first date for coverage is January 1, 2006. In order to have coverage you have to apply by May15,2006 or pay a penalty. After May 15,2006 you can’t apply again until Nov 15,2006.

For assistance in paying part D premium single people have to have income less than $14,455 and for couples <$19,355 with assests of no more than $10,000 plus a burial benefit of $1500. That is just the basics. Use every available free service out there to help you understand what is best for you.

[lindajo]

Rush In Chicago is one on the best from all of the patient comments I have heard. I don’t think Dr. Raza is there anymore, I think she is in Boston.

They have a number of trials that are available there. It sounds like your hematologist made a great recommendation. Keep a positive attitude that is truly half the battle.

[lindajo]

I kind of like how you wrote “adds up quickly” the first time. I know that it can feel like it’s time to give up hope when no one matches, but you shouldn’t feel that way. BMT is only one treatment and it is one that the transplant doctors use as a last resort. You still have time to find a donor.

I have RCMD, one of my sisters is a match. We discovered that in 1991 but we haven’t needed to use her yet.

In order to find a donor for your husband have them search the registry now and mobilize your family and friends to raise funds for a bone marrow drive. The National Marrow Donor Program http://www.marrow.org may be able to guide you to others who have had donor drives. These are efforts to get people to join the national registry and save any patient. One of those might be able to donate for your husband. Especially in minority populations the need for new names in the registry are important. Even if you don’t find a donor for your husband you might find one for another patient.

I hope the registry finds a suitable match if you end up needing one. I will pray for your family. Lindajo

[lindajo]

I think that you are incredible brave to look into holistic treatments. AML-M4 advances so rapidly that I would be afraid to try to do just one type of treatment.

Many western doctors will work with holistic doctors they just have no training in that area and very little in nutrition that they won’t recommend treatments.

I know that Fred Hutchinson in Seattle Washington, a center of excellence for MDS, works with alternative doctors and nutritionists on their team. At last year’s convention for the Aplastic Anemia- MDS Foundation annual convention one of their doctors stated that they try to work with other specialists in the holistic realm. You might seek out their help.

You might also look to St. Jude children’s hospitals for guidance.

I will pray for Rayi.

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