I need help

[Jerry]

Fran,

It could mean anything. They might have messed up a test …. forgotten to do one …. gotten results, either high or low that don’t seem to make sense to them. They might want to confirm a negative result before revealing it to you OR they might want to confirm a positive result before confirming it to you. My father gave me some very good advice for this exact situation. If you have something to worry about, there are 2 things you can do. 1)do something about it so you don’t have to worry any more or 2)you cannot do anything about it now, so there is no point in worrying about it now. So, as hard as it seems to be, try to relax and not worry until you see the doctor and get the results. Our thoughts are with you and Jim.

Jerry

[Sandy L]

Hi Fran,

Do not worry in advance. Always ask for a copy of the blood tests and start you own log. Keep track when he gets a Procrit or Neupegons shot and how much (doseage). This can affect the counts as well so it is good to keep a close track. Mike has serious nauseous problems after the second round. Nothing he can’t deal with but it is awful. Hoping that the 3rd round will be better. The first time he went to the hospital for sat and sunday shots. The second time he skipped the weekend and then continued on Monday.

[dmiller]

Hello. My Dad has MDS. He is 76 years old. We live outside of Cleveland, Ohio and would like to know if anyone is being treated for MDS in our area. He receives procret and has had 2 rounds of Vidaza. i do not have his numbers available. It seems like the doctors he’s been to don’t know much about MDS.

[Fran]

Hi Dmiller:

My husaband is 73 and he has MDS also. It seems that most of the Oncologist don’t really know much about MDS. Jim will be starting Vidaza this Thursday and I hope that we will know more from the Dr. at that time. They took lots of blood from him last week and even took one of the blood samples over again yesterday.

We live in the Phoenix area, so we can’t help you with information in Ohio.

Fran, wife of Jim

[gemloyear]

dmiller, Read Jerry’s post above, he goes to Cleveland Clinic.With out knowing the mds category or his counts it seems he is having the usual treatment for a person his age. There are some of the top Dr’s in the country in Cleveland, Jerry can fill you in.I hope you find a Dr. that you can have confidence in.
Ellie

[sugarwhale]

Dear DMiller and Fran,
We know what you mean about doctors not knowing much about MDS. My 88-year-old mom began with one of these. She’d be dead now if we hadn’t phoned the wonderful people at Moffitt in Tampa. We got the 800 number for MDS on this site. They suggested a “Center of Excellence” to us and our fine doctor. My mom now sees Dr. Robert Hromas at the UNM Cancer Research and Treatment Center here in Albuquerque. If anyone can save my mom’s life, Dr. Hromas can. My suggestion to you is that you find a “Center of Excellence” nearby and get the recommendation of a fine doctor who specializes in MDS. Best wishes to you!
Sincerely,
Janet

[Fran]

Hi all:

Well, Jim was suppose to start his treatments yesterday. We went to the Oncologist and she read the blood test, which some didn’t come through yet. she said that his immune system was very low and before she startes him on Vidaza, she needs him to build his blood up. she told him to get supper Iron pills OTC, Folic Acid, and liquid B12. So now we wait until next month and another BT to see if he can start on the Cemo. We really like this Oncologist. She doesn’t jump into anything and since Jim has a bad heart she didn’t want him to have a heart attact. So, I think we will stay with her.

He will start his treatments on the 6th of December.

Fran

[Fran]

I think they lost all his blood test. Don’t know what to do. First he has MDS and then I don’t have any idea why they are waiting to give him Vidaza. He feels fine, other then being tired during the day. We asked for the test and so far have not gotten them from the Oncologist.

What to do? Do you guys have any idea’s?
Thanks for anything you can give us.
Fran

[dmiller]

Jerry, Can you please tell me witch Cleveland Clinic you go to and who the doctor is that you see? Thanks, dmiller

[Luke and Margaret]

Fran my love, you are going to give that pacemeker of yours a real challenge! It is important to breathe. luv. Just breathe and quiet yourself.

You are not responsible for finding the blood test results. They will figure that one out, I promise you. If they have to repeat them, so what? From your earlier post you knew that was going to be necessary anyway!

As for why you are waiting to start Vidaza, I imagine it is for the same reason that Luke and I are waiting. Vidaza affects the immune system. It lowers the blood levels. Your doc will want to make sure that your husband is in the best possible position to withstand treatment. She doesn’t want to have to deal with any infections or complications that could have been avoided by taking the time now to build up his blood levels as high as possible.

It is terrific that your husband does not seem to be overly ill. While the real test of how sick he is is in what the blood levels say, it sounds like he is capable of enjoying his life to the fullest extent possible.

Your doc seems to have given you a good list of blood builders to work with. On another post on this forum I also wrote some of the things our naturopath was recommending to help Luke get ready for chemo. Some of it is a lot of fun, and we are both benefitting from them.

Please take good care of yourself, and do the very best you can to put the worries away, be at peace, and live each moment to the fullest. It sounds like everything that should be done is being done, so your well being is the best gift you can give to your husband at this time.

I know that is easier said than done, I struggle with it every day myself.

Good luck, hun. (((Fran))))
Margaret

[Fran]

I am at my wits end. Jim tooo a whol battery of blood test on the 2nd of this month. They called him to take one over again on the 7th. He had an appointment with the Oncologist to start his Vidaza treatments. I think they lost his test and now she post-poned his appointment for another month. I want him to go to Mayo clinic, which is here in Scottsdale but he said he doesn’t want to get involoved with new doctor’s. I think he should go there and see the head Oncologist, since he knows what MDS is. What do I do know? I really need help
Fran (71 year old wife)

[Luke and Margaret]

Hi Fran
Are you sure they lost the tests? Perhaps the delay is because of the results of the last test? One way to clarify is to call your doctor and ask if what you are worried about (lost tests) is really the reason for the postponement.

I understand your husband’s not wanting to make any changes right now. Do you think he could be convinced to get a second opinion? You might break it to him by telling him that you want to know that you and he have done everything in your power to ensure his well being, and that if anything terrible happened (God forbid) you would always be left wondering if this one thing would have made the difference.

There is another reason to go to Mayo. If they are anything like the Princess Margaret Hospital here in our city, they will have a “psychosocial oncology” service. We see a psychologist through that service, and am I finding it really helpful. It gives us a place to go and just process things. Everything moves so quickly and confusingly, sometimes the chance to just sit quietly and talk things out makes the world of difference to my confidence level.

Jim may also respond to your request to get some support to understand everything that is going on.

Luke gets horribly stubborn when he isn’t feeling well. I’m a bit younger than you are, so I still have the strength in my hands to strangle him when he gets like that! I have to control the impulse a LOT! Its darned hard to fight with a sick and cranky guy, but sometimes they have no idea what is good for them. More importantly, you have to be comfortable with what is good for you, too.

Does the local Cancer Society Chapter have a support program? Much of what you are describing sounds so typical of the ups and downs of living with an illness like this – again, just having someone to talk it through with could really make the world of difference!

Wish I could give you a big ole hug; it sounds like one is needed.
Margaret

[Fran]

Hi Margaret:

I just typed a long e-mail to you and was kicked off by aol. We are changing are provider..hope soon.

Anyway I finally talked JIm into going to the Mayo Clinic. We still haven’t gotton the BT and he took some more Blood yesterday.

We have an appointment with the top Oncologist that deals with MDS on the 7th of December. I hope we get the blood test before we go there

If not they will take some more I am sure. Jim is sending what we have to the Dr. now.

You have been some kind and helpful and I really appreciate that.

There is no support group for MDS here in Phoenix. I already tried and found none.

My children live miles away and are no help. Jim’s son calls him once in a while.

I wish you hope and a Very Happy Thanksgiving.
Fran.
You can e-mail me at dashmaddie2000@aol.com

[Suzanne]

Fran, have a good Thanksgiving. I am glad you are finally getting him to Mayo. If nothing else I think you will know more and you will feel better because you have been in contact with an expert in the field.

[Fran]

Hi Everyone and a Happy Holiday to you all.

Husband, Jim went to the Mayo Clinic and they told him they had a clinical trail going on there for advanced MDS. He would have to go there for 5 days in a row each month. It would be in IV form and last 1 hour each day. Since he has not started any treatment yet and the clinic is 2 hours away from where we live. He was so stressed out after we came home that he said no to the trails.

No it is back to seein an Oncologist near are home. He has an appointment on the 29th but I am sure she will not start any treatment until January.

I worry a lot. He is 73 years old and I am 71. His age has a lot to do with the chemo that she will be giving him and that really scares me.

Any thoughts on the matter would help.

Thanks..Fran

[Author]

Posts