[lindajo]

Well I did get the flu this year, even though I had the shot. My grandchildren tested positive for Influenza B. I had been around them so I was tested and came up positive. I had a higher fever for one day and then with Tamiflu it disappeared. I probably would have thought it was just a cold if I hadn’t been tested. My grandsons were sick 10 days and ran fevers of 102-104. I think my flu shot really minimized any problems for me.

[lindajo]

I have not had the flu since I started getting the flu shot in 1992. I highly recommend it.

[lindajo]

It depends where the bump is. When my sinuses are clogged I have tender spots on top of my head. On the back of the head near base of skull are lymph glands that may need checked. Have you had allergy or sinus problems lately?

[lindajo]

There are foods to avoid when you are neutropenic. Be sure and check with a registered dietician. I avoid anything that is fried. I feel my system does best with veggies that are steamed and meats that are broiled with few additives.

[lindajo]

For having this disease your tests results are good. I have almost identical issues. I was diagnosed at 30 in 1991. There is life after diagnosis.

Hang in there. You will learn to adjust and now there are treatments and research to support you.

[lindajo]

How are you doing? Glad to hear about the 9 point match. Keep us posted.

[lindajo]

Listen to him. Also understand that much of what is written on the internet is based on old information. New strides are being made everyday. Get a second opinion at a Center of Excellence. That can be invaulable.

Listen to your body. It will tell you when it is time to worry.

I was initially diagnosed as high risk and the most optomistic estimates was 6-months to 2 years. That was in 1991,21 years ago. Doctors can only guess. What you do with your diet and management of the disease is critical. Worry generally doesn’t help.

Learn as much as you can and make little changes daily to live a healthy lifestyle. Remember that no matter what, only God decides.

[lindajo]

Your improvement in blasts is very encouraging. Even if you had a match today, they would hold off on a transplant with chemo working so well right now. It at least is giving you the gift of time to find one and explore a SCT options.

[lindajo]

I haven’t always been stable. The first 10-12 years was largely a roller coaster ride. My Hmg is usually in the 9.5 to 10.5 range. My hematocrit runs generally from 30 to 33. If I get below 30 my Hmg drops pretty fast and I generally need a transfusion. My white cells are almost always 2.4 and my red cells around 3. My platelets are low normal, never been out of acceptable range.

I have labs done according to were my Hmg and Hematocrit are. Never longer than 6-8 weeks apart.

I get b-12 shots which help tremendously. I used to take a ton of supplements. Now I have it down to b-complex vitamin, folic acid and calcium with D3. If I don’t eat enough fish I will take an Omega 3 vitamin. I tried Procrit and it didn’t help at all. Holding off on other options because I can. I don’t fit into a neat category so I don’t qualify for trials generally.

I have BMB whenever I go to a Center of Excellence or get evaluated for a trial. I donated my marrow for research at Cleveland Clinic. One of these days I need to trek back there and give them some more.
Wait and watch means I have half a life. I used to be convinced if they would just give me a transplant I would be healty again. I like to ignore all the realities of the side effect for BMT’s Statistics have improved so much over the years but it still should be only if you have to procedure.

[lindajo]

So glad he found something that is giving you some relief.

[lindajo]

I was 30 when I was diagnosed. I am now 51. Although I have a sister that is a perfect match they have postponed a BMt until there is no other options. This is because of the risks associated with BMT. Many times even if it cures the MDS you can end up with other life threating disabilities. Wait and see can be a very long time. It has worked for me.

[lindajo]

Hey Anne, It will probably help you to get copies of all of your tests. As you learn more about the disease it will help you to understand where you are in relationship to recommended protocols. Which Chromosone problem do you have? How is your treatment going with Revlimid? I am thinking of you. Linda

[lindajo]

Whenever I push my body too far, nightsweats show up. Six times a night is excessive though. Bring that to the doctors attention. See if anything else is going on that may cause the nightsweats. At least you know it isn’t menopause.

[lindajo]

I have used tylenol for years without any problems. Check with doctor first because of his particular liver concerns.

[lindajo]

I have lived the past 21 years with MDS. Each case is different but don’t assume that a transplant is your only option. I had numerous transfusions in the beginning but it has now been two years since my last.

Be sure and change your diet to a healthy one. Lots of fresh fruits and vegetables. Eliminate fried foods, go with baked broiled or steamed. Give your body ever chance to heal itself. There are a lot of treatment options now. Procrit, Vidaza and other clinical trials may work for you. Don’t give up.

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