What the Oncologist said

[franm]

Hi Lynette:

No, Jim hasn’t been on anything yet. He will have another blood test on the 15th of March and then see the dr. on the 22nd. I hope she will do something, but I am worried that if she does anything it might not be the right thing at this time. Jim has a bad heart and many other things are wrong with him. But I guess we will just wait and see.

As for Medicare. Jim has Medicare plus United Health that we pay for. I am sure he will be covered for any kind of treatment. We pay 200.00 a month for his coverage. I am on a HMO.

Thanks

Fran

[covergirl]

Hi Franm,
Hope this eases your mind. My Mom take procrit shots at the doctors office and they are covered by Medicare. She also has AARP-United Health and TriCare for life. She pays NO out of pocket for the shots she gets 1-2x/month. She is NOT an MDS patient, but is severely anemic d/t kidney and other health problems.

Just an FYI as I know how healthcare, insurance and $$ can stress one out.

–cheryl

[franm]

Hi Covergirl:

Thanks for your e-mail. I guess I do get stressed out when it comes to money. Jim and I are living on SS and my Portfolio. I thought that we would travel and have some fun now that I am 71 and Jim is 73; but I guess it will go for Medical instead. We have been married 11 years and was hoping to go someplace for my 72 birthday, which will be in May.

But thanks for the information you send to me.
Fran

Good luck to your mother.

[franm]

Hi Good People:

We just came home from the Oncologist and it seems that his WBC went up since last month. It was 4.3, his RBC count was 3.33, his Hemoglobin was 11.7, MCV was 33.6, his MCHC was 34.9 and his Platelets were 130.

At this point the dr still wants to wait another month. She said she might doing another BMB next month and if his blast goes up she will start him on Procrit. I think I spelled it wrong.

So, I guess we will just wait and see some more.

Do any of you have any idea’s?

Thanks for listening.

Fran

[franm]

Hi Good People:

It has been over 1 month since I last worte to you regading my husband’s MDS.

We just came home from seeing the Oncologist. She said that his Blood count keeps going up and down but just a little. Since it has been 1 year since his last BMB, she scheduled him for another one on the 9th of May.

This is his blood count for this month.

WBC – 3.9; RBC – 3.57; Hemoglobin – 12.3; Hematorcrit – 35.6; Platelets – 103; Glucose – 117; MCH – 34.5; MCV – 100.

Jim was told that he had MDS in January of 05 and so far they are not giving him any program of Cemo. It seems that we are just in limbo.

Don’t know if we should plan a trip or just wait. Jim doesn’t have any Pricription drug program with his Medicare and AARP. So far he has not had to take any prescriptions; so we are waiting for the BMB and then we hope to know more.

Thanks for letting me sound off to you wonderful peole.

Good luck and G-bless you all.

Fran

[eve]

hi fran

my advice is plan a trip while your husband is feeling well and not on any treatments – enjoy your time together

eve

[patti]

Fran,

His counts look pretty good. I’d be planning a trip and movin’ on. Don’t put life on hold waiting for the other shoe to fall. If he feels well and you both want to – go. Have fun. Forget MDS for a short while. Have you signed him up for Part D of medicare yet? The sign up date is getting close (May 15th I think). I would encourage you to do that. I know it’s saving my MIL a bundle. Her shots are $275 per shot and she takes 2-3 a WEEK. That adds up quick. She’s already only paying the 5% for the rest of the year already.

Take care,

patti

[franm]

Hi Patti:

Jim has good Health Insurance with Meddicare and Untied Health. We pay 200.00 a month for his insurance and I am on a HMO. Can’t afford both of us. He has the VAinsurance for his everyday stuff that he gets in the mail but if he needs a new med. for his MDS he has no insurance to cover that.

The Oncologist said that we should wait until after he has the BMB next month to see if the blast hasn’t gone up. Last year it was 10% blast.

I hope we can get away for a week. But since it gets soooo hot in Phoenix during the summer…there is no good place to go to to cool off. I would like to go to Cabo San Lucas, maybe in June or July. But I don’t want to make reservations yet. Maybe next month I will.

Jim and I will be married 12 years in May and my birthday is in May also.

So, we just go from one day at a time and hope he doesn’t get sick soon.

Fran

[franm]

Hi all:

I have a question regarding MDS. My husband Jim has been losing a lot of weight lately. About 2 years ago he lost 35 lbs in about 3 months. He is on the thin side normally. We went to one MD after another. They did all kinds of test and could not find out why he lost so much weight.

Now he is losing again but this time he is already thin. I can feel his bones and I am getting really woried. He seems to eat fine and I just wanted to know if any of you that have MDS had this problem.

Jim will be having another BMB on the 9th of May.

Thanks for taking the time to listen.

Fran (Jim’s wife of 12 years)

[Jimbob]

Fran,
Are you sure that Jim does not have prescription drug coverage with United HealthCare? Check on it before you sign up for Medicare part D. Also, UHC assigned a case manager nurse to me when I was diagnosed with CMML to help me locate services and providers. You might wee if they will do that for your husband.
The local VA, in Portland, Oregon, where I live has a couple of doctors that are also on staff at the Oregon Health and Science University Hospital where I was treated. They are able to write prescriptions thru the VA and eligible vets then only have to pay a few dollars instead of hundreds or even thousands for the needed meds.
Are the doctors that are treating Jim associated with a Center of Excellence? And have they had a lot of experience with helping older MDS patients?
As far as traveling: I beleive that as long as he can maintain a good quality of life, get on with it. Enjoyment helps one keep a good attitude and that is really needed to beat this disease. Personally, my wife and I took a 5 week RV trip cross-country to visit relatives and some of the must-see places while we were waiting and watching to see what would happen. Good times, good memories and the desire to make more!
Jim

[gemloyear]

Hi Fran, Yes my husband {age 76} has lost a lot of weight over the last year. He has had some serious illness during this time, R. Arthritis, pneumonia,DVT. and colitis. I thought all of this caused the weight loss along with his low blood counts. Most of the time he eats well, good nourishing food. His weight seems to have stabilized now, thankfully. See to it that your husband eats well, try to see if you can get him to eat several times a day, 4 or 5 if possible. Good luck. I hope his BMB turns out well.
Ellie

[gemloyear]

Fran, Jim is so right. WE haven’t curtailed our traveling waiting to see how the disease is going. On our last trip in feb. he landed in the Hosp. on the last day with pneumonia. Last Sept. he went into the Hosp. on our first day back with blood clots. He is planning his next trip for July. His MDS evolved into AML. in Jan. 2006. He has something to look forward to, which I believe keeps him going. Just be sure to take all of his reports with you and to check out medical facilities at your destination.He no doubt would have had these illnesses if we had sat home and waited. So go for it.
Ellie

[franm]

Dear Ellie:

Thanks for the information regarding Glen. We are just waiting for his BMB, which I said will be May 9th. When he see’s the Oncologist on the 23rd of May we will know what is going on with him.

We have had company most of April and we have all kinds of Dr. appointments in May. We also have our 12 year Anniversary as well as my 72nd birthday in May.

We are hoping to get away for a week in June. It is hard to make plans because of our money situation, which is all in my name and getting smaller all the time. So, things will just have to wait and see.

Fran

[patti]

Hi all,

For those MDS patients that are having trouble with losing weight (or needing to gain) please please get a high quality whey protein and drink it several times a day as a smoothie or just a standard drink. Whey protein is used to prevent muscle wasting in cancer patients all of the time. It’s protein and full of amino acids. The best way to drink it is as a smoothie. Mix one or two scoops (read directions) with 8oz of water or milk and add whatever kind of berries or bananas, etc. you like. You can also add a few ice cubes if you want. Blend in a blender and drink. It needs to be used right away once its made so you might have to experiment with how much your spouse can drink at one time so as not to overmake it. They may not gain any weight (unless you can get them to drink it 3 times a day in addition to their regular meals) but it will prevent any further muscle wasting. Remember, your heart is a muscle also. IF THE PERSON NEEDING IT IS ALLERGIC TO DAIRY PRODUCTS CHECK WITH YOUR DOCTOR FIRST! Whey is a part of dairy.

Hope this helps.

Patti

[JAGGYONE]

Hi,

My husband is losing weight every week. The doctor believes it’s the result of his graft-vs-host disease. He doesn’t eat much now but even when he did, his weight kept going down.

We got some really bad news last week. There’s nothing more that can be done and it’s just a matter of time now. He had a bone marrow transplant in August ’04 and was doing so well with 100% donor marrow. Then, things started to turn around and now he has 20% of his own cells back (the ones with the chromosome abnormalities).

He wants to travel and the first place he is hoping to go is to Disneyland with our 5-year-old grandson. I know how badly he wants to make this trip but I see the way he is every day and can’t imagine it happening. He slept all day yesterday and couldn’t get out of bed to go for his scheduled blood work today. He also hasn’t eaten anything but an ice cream shake in days.

He went through so much in the last 3 years and it’s hearbreaking to see it end this way.

I think about each one of you with hopes that good things and healthy times lie ahead.

Judy

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