Father just DX'ed

[camiboxer]

I am so greatful to have found this site. My father who just turned 66 was dx’ed with MDS yesterday. The Dr. called him and said that *some* of his test results were back in and that he has MDS. Thankfully dad asked the guy what it stood for AND how to spell it. He was told that MDS was chronic and there was no cure. Dad asked if it was cancer and he said no. He requested the family, (dad, step-mom and myself) to meet with him in 3 weeks.
I decided that I couldn’t wait 3 weeks for further info and got online and found a Dr. who specializes in MDS at the Authur G. James Cancer Hospital in Cols, Oh. They are seeing him next Tuesday. Dad lives about 2 hours away from the facility but it is close to me and I feel more comfortable that he will be seen by someone other than a Dr. in very rural medical clinic.
His blood results have been “odd” for just over a year now. His family Dr. put him on iron. That didn’t help. Dad says he doesn’t have ANY symptoms, he feels fine. I have thought and mentioned for the past year that his coloring was off. He also has had some bruising but was chalked up to him being on Plavix & asprin therapy. He had a quadruple by-pass in 2000 and a pacemaker in 2001. He also has some blockages in his carotids but those are being monitored and managed with meds.
I am not even 24 hours into this new diagnosis and I feel as if my head is literally spinning. We don’t have anything further to go on at this point. No specific type of MDS or possible cause. All I know is that I have spent the past 6 years learning everything I could about helping him with his heart issues and he has been doing great. All of a sudden I have been taken out of my comfort zone and I don’t know if I have it in me to cope. Since he feels “normal” he doesn’t think it is anything serious. But MDS certainly does seem serious and life threatening. He says that he will trust in the Lord and then let ME take care of everything else. That is a lot of pressure. I love him and will do everything I can to care for him but he lives over 2 hours away, that is just not right around the corner. He is paranoid about being able to pay for treatment and meds. His SS just kicked in and he is now on Medicare. He has no savings and lives on a fixed income. I have been telling him for years that he needs to start saving money….he never listened.
I plan on reading through the older posts to try and gain some wisdom about this pit we have just been thrown into. I have copies of his blood work for the past year. Is there anywhere that I can go to and see for myself how bad this is for him? Thanks for reading.
Susi

[JaniceR]

Susi: You won’t really know just how bad it is until you get the results of a bone marrow biopsy and know if he has any chromosome disorders and what classification he is in. My dad was diagnosed in January with the worst one. His first treatment didn’t work. He started a new treatment in May and so far this new drug (dacogen) that just got FDA approved seems to be helping. Going to the MDS Center of Excellence is the BEST thing you can do. Good Luck to you and your dad.
Janice

[Caroline]

Hi Susi,

Janice is right. You cannot anticipate what will come next and fix it ahead of time. The test results will be your guide. You can start by learning what is involved in blood tests and find out what is considered ‘normal’ for a man your Dad’s age. The numbers that the doctors tell you will mean nothing if you don’t know what normal ranges are. Besides the blood disorder, my Dad also has Angina and Chronic Kidney Failure. I remember over Christmas when my Dad nearly died in hospital, Dad’s Kidney Specialist told me that his Creatinine Level was just below 600. I smiled and thanked him for telling me. Then he said in a very disgusted voice, “Normal should be around 100.” It was then that I realized that if I am going to help Dad, I had better know what ‘Normal’ is. It is easier for the doctors to give you advice on how to help your Dad if they think that you understand what they are talking about. It looks very foreign when you first begin to study it but after awhile it makes sense.

Your story sounds very similar to mine. My Dad had MDS for 3 years before a bone marrow biopsy showed CMML. Whether it was CMML all along, I don’t know. I am planning to talk to the Oncologist when we visit him again in September to find out the timeline. Anyhow, I was…and still am…scared. I learn as much as I can and it still doesn’t seem to be enough. You are wise to read through as many of the Forum Posts as you can. You’d be amazed how many of us have the same similarities and the advice is well worth the time it takes to read so many pages.

At the very beginning of this journey my Dad’s only complaint was that he had a body rash and a perpetual cold. His nose ran for months on end and he always felt a little bit run down but not enough to go and visit a doctor. Finally Mom mentioned it to the family physician and he sent Dad to an Immunologist at a teaching Hospital. They diagnosed MDS and sent Dad to our local Oncologist who has monitored him ever since.

I always find that the waiting periods are the most frustrating for me. I want answers NOW and that isn’t possible.

Best Wishes to You and Dad and Step-Mom.

Caroline

[eve]

hi susi

a diagnosis of mds can be devastating, but don’t panic-my husband had a heart attack many years before my dad was diagnosed with mds, and i became a heart care “expert” – then on top of all that i had to educated myself about mds- it was a little overwelming- especially because with mds everyone is so very different – my advice to you is to gather all the information you can so that when you speak to the doctors they see that you are an informed “consumer” -also it becomes very helpful to keep an ongoing chart listing every cbc your dad has, plus dates of doctor visits,notes etc- this way at a glance you can see what has been happening – i have a chart i have been using (if you want a copy i can fax it to you) at every doctors visit i give them a copy of the most updated list and they find it extremely helpful in seeing trends in my dad’s condition

feel free to ask this forum all the questions you need help with – we are always willing to help noting from our own experiences as patients and caregivers

good luck
eve

[chuckk333]

I wa dx’d with MDS just 4 weeks ago, and I did just what you are doing–getting as much info as I can and monitoring the forum. It can be quite intimidating and scary to find out what others have and are facing. It is just now that I am coming to grips with what I have and how to deal with it. I have another website that you might find helpful. It seems to have a lot of positive stuff in it. AA&MDS International Foundation.

[Terri]

Susi, I have kept a Journal from the onset of Bobs MDS- dx in AUgust 2003. we were in getting Bob’s Bone marrow Biopsy results to see if disease progressed, It was low Iron, but anyhow doctor was asking if he had IV feracet before I was able to go back and find it and give him the exact time. I keep his weekly Counts in there. And then when we go to the doctor I list all of my questions so I don’t forget to ask. Most Importantly in the back I have a list of all of Bob’s meds and doseages. Any time he needs to go to the Hospital outpatient or gets admitted then I have all of the required info handy. It really has been a help. Bob will not remember everything he has been through in the past three years but I can thumb through my journal and find it. I keep track of any fevers, unusual pain, etc etc.
I would recommend it to all caregivers.
Never be afraid to ask questions this forum is such a help.
Peace

[sdrake]

Susi,

I understand how you feel. My dad was diagnosed right after he turned 66 too. We were all pretty overwhelmed to say the least. I immediately started reading everything I could find, and it all scared the bejebeez out of me. Many on this forum wisely say not to put too much stock in the info you will find on the net – much of it is outdated. When my dad was diagnosed Vidaza had just come out. We felt extremely fortunate that there was some sort of treatment to try. Since then two other treatments have been approved. This gives us hope that more and better treatments are coming in the future.

This forum has been a God-send to me. There is a wealth of information and support from its members. Don’t be afraid to ask lots of questions.

Take care,
Shari

[chuckk333]

The AA&MDS Foundation International has a packet of stuff that they will send out to MDS patients/care givers and it contains a note book to keep all the data organized. http://www.aamds.org/aplastic/

I just received another packet from this MDS foundation that has a journal for all this information as well. Just request it.

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