Newly diagnosed

[RC813]

Hi All,

My 49 yo husband was diagnosed just yesterday. He was told that he is INT-1, less than 5% blasts, low blood cells (all 3 types) good cytogenetics.

Doc told him he had good news and bad news when giving dx. Not sure that I would agree as from my limited research shows, there is nothing good about this disease.

His medical history includes many kidney stones, a recent hospital stay with possible diverticulitis and kidney stones as well as low blood counts..a triple whammy? He had a team of docs scratching their heads and Chief of Surgery chomping at the bit but in the end, they released him and said to f/u with his primary. After a week in the hospital, his primary sent him back due to wbc of 1.8.
They labeled him as neutropenic and ran many tests while having him wear mask/gloves etc…Had a hematologist give him a shot and number went up and discharged him again and again had him follow up with doc for more labs.

When labs came back low again, he sent him to oncologist who scheduled him for bone marrow biopsy which just came back with his MDS dx.

He had alot of weight loss, was quite over weight so this wasn’t a terrible thing but not healthy weight loss, symptoms of fever, pale and no appetite. They had given him shots of antibiotics and after being home several days, he started feeling much better.

Now he feels well, eating and gained a few pounds back and was in shock when doc came back with this dx.

I have so many questions but will start with a few basic ones and hoping you can answer.

Doc said he would be neutropenic for life..is this true? Is there any diet that he should be following? Any specific foods/drinks he should be avoiding?

His doc has him on a wait and see mode. Will be doing more labs next week and 3 month follow ups after that. Should he be more proactive or is this because he isn’t currently showing any symptoms?

I read that MDS can turn quickly into Leukemia. What are the stats on that and time frame?

Can MDS be reversed by treatment? Is treatment stem cell transplant or bone marrow transplant? Or does this depend on type of MDS? I’m not sure type he has but will ask doc next week.

What is more worrisome, progression of the disease or lack of immunity to fight infection?

My husband works at a VA hospital and is therefore in an environment with a host of germs. He also has high blood pressure, had 2 stents put in for blockage 4 months ago and has Barretts esophagus. Doc said not related but would these put him at higher risk?

Sorry for such a long post, thank you for your replies and time and I truly wish you all the best.

RC

[riccd2001]

You may want to visit the marrowforums.org site with these questions for a quicker response. That forum is more active with many people (both patients and caregivers) who have a lot of experience with these good news/bad news dx.

[Mary4Mike]

RC,
I agree about the other forum, but you find answers here, too.

Ask your doctor for literature on a neutropenic diet. If he doesn’t have any, look it up on the internet. You have to be careful with raw food washing, etc.

MDS can turn to leukemia. There is no time frame – everone is different. They will watch for changing labs and also changes in biopsy reports. It may never convert to leukemia. The only cure is transplant. The chemos they are using aren’t cures. Again, different results for everyone. There is no tried and true regimen.

Your husband should be careful when he returns to work. Hand washing is big…..always carry hand sanitizer. If his counts are low enough or if a lot of people are coughing (we are coming into cold and flu season) perhaps he should wear a mask.

His preexisting conditions (excluding blood pressure) would put him at risk only if they offer an avenue for infection.

We are here for questions. Please ask. Hang in there.

[RC813]

Thank you both for your quick replies. I will check out the other web site for sure. I know that the diets for neutropenia are somewhat controversial and was wondering if anyone had first hand experience.

Mary, we both have worked in hospitals and know that hand washing is #1 but that won’t do anything for air born germs, I guess short of living in a bubble, anyone with any immune issues is at risk any time they are out in public.

Have you seen your loved ones go into depression over this disease? Doesn’t look like too much in the way of face to face support groups here in Fl.

[bobweinberg]

Your signature says that you are in Tampa, Florida. Moffitt Cancer Center is one of the finest MDS centers in the country. Have you been there? Dr. Alan List, who practices there, is a world reknown MDS expert.

[wjw50]

Depression can go along with MDS or any other cancer diagnosis. I would try to find a support group. I have MDS and mine is not all that good. Have not had transplant yet, but see it in the near future. I live in northeast texas and there are no support groups here . I have to depend on my family for support. Good Luck and God Bless.

[Anneg]

Hey Rc,
Just like your husband. I was diag. just a few days ago. you already have more info than I do. All I know is I’m 4 months away from full fledge aml. Start treatment of vidaza on the 9th. My only chance is a transplant. My mds was caused by chemo and radiation, from breast cancer. My doctor said baby steps right now. thats really hard, because I really don’t have any answers to any questions. Good Luck and may god bless you and your family. Hang in there and try any site you can find.

[Lodesman]

Hate to say it, but MDS is a lottery. And odds are against you if you have had previous cancer treatments. Vidaza does not help everyone, and is extremely costly – sell your house level – if you are not health insured or in a country with a National Health Service. Transplant success is very age dependent. I am considered too old at 74. Anti-infection control is critical; particularly avoid small children (like grandchildren :)) and crowd environments. Eat as healthily as you can afford, be very careful about eating outside your home environment, and exercise daily. Check your temperature. Do not delay going to hospital if it goes over 38 or you suddenly feel bad.

[Mary4Mike]

Anne,

I agree with Lodesman that MDS is unpredictable. I really don’t know how your doctors can tell you that your MDS will turn to AML in 4 months. I have never heard of such a thing. There is always that possibility, but to say in a certain time frame you will have full blown AML is a new one to me. Perhaps your bloodwork is showing an increase in blasts and other indications of it changing, I don’t know.

Lodesman,

I am happy to read that Vidaza has given you a remission.

[trish1103]

i was diagnosed about a year ago just doing a watch and wait it is very frustrating not knowing whats to come guess i have to just take it day by day.

[Rod]

Likewise, I was diagnosed this past September, They’re just watching the counts right now. Problem with my MDS is the deletion of long arm of chromosome 7. My only problem is frustration and fatigue. Otherwise "Lifes Good." Hang in there Trish

[kari1617]

I am 32 years old and was recently diagnosed. I am at 10-20% production of RBC and should be at 70%. I am currently awaiting a bone marrow transplant. The waiting is hard. I know that no one should live in fear. I’ve been trying to do a lot of research but there is a lot of things that people have differing opinions on regarding <MDS>.

[bobweinberg]

Kari, are you seeing a doctor at an MDS Foundation Center of Excellence? There are a lot of particulars to determine to evaluate what treatment is best for you. Do you have a related match as a bone marrow donor? Knowing your IPSS (International Prognostic Scoring System Score is very important in balancing the risks againsts the benefits of various treatments.

[Mcgaughey]

I am newly diagnosed with mds and everything I read on the Internet is discouraging. My Dr told me to go home and not worry. How can I do that? Elaine

[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.

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