Some encouragement needed

[californiamom]

Hello my dad was diagnosed in January 2006 after getting pneumonia. They thought he had Luekemia, but was told he had MDS, which is worse I don’t know? He’s been to two Hemotologists who have confirmed he has RAEB-2 14% blasts with no chromosome abnormalities. I have to say both the Hemotologists have been very harsh and matter of fact, even though everything I’ve read is different for everyone.
They have given him a very short amount of time to live and that seems to be all he can focus on as well as myself. My dad is 66 years old and in very good shape. They are having him start on Vidaza (sp) pretty soon. If anyone has any encouragment or any information I would really appreciate it very much. I would really like my dad to be around for a few more years in order to get to know his granddaughters who are 9 months and 2 years old, I know this is selfish, but I wish the doctors hadn’t given him a time frame for life.
Also, he’s talked to a doctor at Fred Hutchinson in Seattle, who said he should come up to talk with them and maybe get in a clinical trial. Any information on that hospital would be greatly appreciated.

Thank you.

[patti]

Hi California Mom,

I was especially touched by what you wrote because my MIL was in the same exact spot 18mos ago. She also is RAEB-T(2) but she had greater than 30% blasts. We thought she had 4-6 months to live. Unlike your doctor, hers refused to give her a prognosis. Her doc felt like that takes people’s hope away. And yet, we wanted one and felt like we needed one. I guess every doc is different. Everything we learned was from the web, which we later found out is very outdated. RAEB is serious but it is not a death sentence in the short term.

We also were offered Vidaza as well as other trial possibilities but my MIL believed that treating herself naturally was the best thing she could do. She does use neupogen and tried both procrit and aranesp but neither of those worked for her. They work wonders for some people. Everyone’s body is so different.

We’re pretty anti-chemo but many people are not so my only suggestion would be to have your dad work with an integrative medicine doctor (specialized naturapath) that will work with his hemos. The best thing he can do for his body is strengthen it with the right foods and supplements so that any chemo he takes will be less damaging. Mom’s naturapath works directly with her doctor and tells her doc everything she’s doing from acupuncture to what supplements she has mom on. The relationship has worked out very well and it is only now, 18mos. later that my MIL is starting to experience the effects of her MDS. Your dad is much younger than my MIL. She’s almost 76, so that is also in your dad’s favor.

Please ignore the statistics you see on the web. They are sooooo outdated. I’m surprised his hematologist is even using those statistics anymore. The last time I researched this, the newer statistics for RAEB were more like 18 mos. depending on how many cell lines are effected. And, mom has beat that one also (she has all 3 cell lines effected). So, don’t get too discouraged and do everything you can to help your dad heal his body naturally so that whatever treatment he chooses will be more advantageous.

All the best to you and your dad,

patti

[CarolineG]

californiamom,

My Dad had MDS for 3 years and then it turned into Leukemia.
Patti mentioned that some people have alot of success with Aranesp and Procrit. Dad stayed stable on Procrit for a few months. Then he switched to Aranesp, and within 4 weeks it did such a good job that they have now taken him off EPO altogether for the time being. The doctor was VERY surprised when that happened. It wasn’t part of the ‘plan’.
Each case is different. These are very illusive diseases. Not only do things change very quickly with new drugs and therapies, each patient is unique and alot of them are able to beat the odds.
My Dad has been given up upon a few times since just before Christmas. He was very ill and spent alot of time in hospital ready to die. At one point, the doctor told us not to go home to sleep because they would only have to call us back when Dad dies anyhow. Well, 2 months later he is home, feeling energetic at this point, and he is even planning his summer activities. Yesterday he told me that he needs our help to shorten a garden which surrounds his patio to make room for his new gas BBQ. The garden is bordered in cement. That will be a very heavy job. Will he still be here to do this job? I don’t know but we know that we cannot give up and assume that the disease will take over or it will. We’ll plan to move that border and we do our best not to even think that he may not be here anymore.
It is too bad that the doctors gave you a time frame. That seems so unfair. Do your best to let your Dad have a good time with your children today and every DAY. Try not to think of tomorrow.
If I learned anything over the past few years with Dad….it was to stop living for tomorrow. I was the worst one for thinking too far ahead. Now I get up each day, give Thanks for the past 24 hours with my loved ones, and ask for another 24 hours. In the meantime, we assume that Opa will be with his grandchildren for a long time to come.

Best Wishes for you and your Dad.

Caroline

[sdrake]

California Mom,

My dad was diagnosed 14 months ago, at age 66 with CMML. I read everything that I could get my hands on and scared myself into a frenzy. I have three young sons who think Grandpa is the greatest. I understand what you are saying about your daughters.

As Patti said, most of the information on the web is outdated, so don’t be too discouraged by what you read.

Dad’s oncologist recommended Vidaza which was started last February. When Dad was diagnosed, his spleen was huge – a result of the CMML. Dad has been fortunate, the Vidaza helped right away. His spleen started shrinking from the first round of treatments. His blood counts also showed improvement almost immediately. Vidaza doesn’t work for everyone, and Dad hasn’t had what is considered a complete response (all the blood lines in the normal range), but it has worked well for him. His only real side effects have been constipation and soreness where the shots are given.

It takes time to let all this sink in. There are times now that I get very frightened by this disease. This forum is a God-send. There are people here with a wealth of information and experience ready to help.

Take care – my prayers are with you and your dad,

sdrake

[g-masews]

Your name indicates you may be from California. I don’t know which part, but if you are anywhere south, check out City of Hope in Duarte (outside San Diego). If you are north, maybe Hutchinson. City of Hope has an excellent reputation for transplants and, overall, treats patients in the medium catagory (3 on a scale of 1-5). Hutch does more in the range of 2 (1-5). Also, I just received some terrific information from the national marrow donor program, http://www.marrow.org/patient, on transplants after 50 and a DVD, catalog of all the transplant centers in America with their statistics and ratings, and lots of information, if your interested. It was all free, just go to their website. But you should definatly check out either hospital.

[franm]

My husband was told he had MDS after several blood test. But that was over a year ago. The first 2 Oncologist he went to told him he had 6 months to a year to live and that he should start Vidaza now. Instead of starting that he changed insurance and went to the Mayo clinic. The Onc. there wanted to start him on a clinical trial but we deceided that to because of his age and being so far from our house.

Jim is 73 and has a bad heart so he isn’t that great. The Oncologist we are going to now has not started him on any treatment. She is watching his blood. He see’s her after taking a blood test once a month. So far all he does is want to sleep.

See other Oncologist and get more information from them.

Good luck.

Fran (wife)

[Jimbob]

City of Hope in Duarte is just east of LA. When I visited my daughter in Whittier last summer, I made arrangements with City of Hope BMT clinic just in case I had any set backs.

Californiamom: I was almost roped into believing the short time frame I was given just over 3 years ago. The docs said no hope, no treatment, no cure and no way I could survive more than 11 months! I was very depressed and used the prognosis to collect half of my life insurance benefits, as the laws in most states allow if one has been diagnosed to have a 75% or higher likelihood of not being able to survive a year, and used the money to reduce the stress in my life and then prove the original doctors wrong. Don’t go by the old statistics, unless you want to use them to get advanced benefits on life insurance, they are indeed outdated and can becoming self-fulfilling if a patient accepts them. A positive attitude, hope and knowledge can give one the ability to help create new, more meaniful statistics. Encourage your dad to prove the backwards doctors wrong! And live it up as muach as he can while doing so.
Jim

[Suzanne]

Hi Californiamom,
They told me the same thing -5 months to a year life expectancy when they diagnosed me with RAEB with a 5Q- chromosome change.-very high risk- 3 1/2 years ago. Here I am in remission for over 2 years. And living a normal life-so there is hope.(and enjoying watching my grandchildren grow up) I must say though, I can’t really say that they are wrong to give people that information. It is a statistical prognosis. Yes they are getting better at treating this disease and more patients are in remission or slowing down the progress of the disease and living with it longer. But I have been in contact with quite a few for whom that prognosis came true. I look at every day I have had past that as a miracle and a gift.Being told that you might have a short time to live-especially when you fell ok- is a big shock and takes some getting used to. Hopefully he will be able to follow the advice we all got-“get your affairs in order” and get to a place where both of you can enjoy whatever time he has. The most important thing is to be in contact with a center of excellence for the disease that will help him determine what treatments are available & what directions he wants to take as far as fighting the disease. Fred Huthcinson is a well known one. Since only Revlimid is approved and it is more likely to help someone with the 5q- chromosome change that he does not have, it would be a good idea to at least have a consultation someplace that has a variety of drug trilas available.

[hmblume]

Californiamom
Find a ‘Center of Excellence’. In Northern California, it is Stanford, starting with Peter Greenberg. [We had our local MDS Support group meeting in Oakland yesterday; all of us but one had recently seen Greenberg’s associate Dr. Jason Gotlib. All were also favorably impressed by the care and human factors shown by Gotlib and Greenberg.] Many hematologists do not stay up with the latest in MDS. No two of us in our group have the same symptoms, nor the same remedies; this is a scary, diverse disease.
It takes a year to learn about this. The main message is to keep trying. “FIND A WAY”
My best wishes.

[californiamom]

Hello Everyone,
Thank you for the much needed encouragement that there is some hope out there and the doctors aren’t always exactly right. I’m glad to hear that you have all surpassed your prognosis and I will definitely pass this along to my dad. I may have needed the information more than he did.
We live in the Bay Area and he did see a doctor at Stanford called Dr. Steven Cohan, who he waited over three hours passed his appointment to see and when he did finally come in, he didn’t have anything nice to say and was so matter of fact. I know this disease doesn’t have anything nice about it, but they can have some bedside manners. I will tell him about the two doctors that were recommended at Stanford for future reference.
I really appreciate all of your emails and will be on the forum for more information. Thank you all again.

[Sandy M]

My Joe was seen by Peter Greenberg,at Standford Univ. we had a good experience there and we were treated with courtesy and respect, our apt. ran over as well, but given the situation, we understood, the University is highly recomended and they don’t like to rush through patients and they allow as much time as needed to each one, they are also aware that folks travel many hours to get to the consultations thats more than likely why they run behind. I hope you’ll give Stanford another try,
Sandy

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