update on my dad

[karenkay]

First, I want to thank all of you for the kind words and information. This is such a complicated issue and this forum has been a Godsend to me.
I did get to talk to my dad’s primary doc. and although an oncologist (the one who was treating his colon cancer) is advising his primary doc, she is not actually seeing my dad.
He has had a BMB and when I asked prim. doc what type of MDS he had she just told me she didn’t know and that I would have to talk to his oncologist. Prim. doc just said he is recieving standard treatment and his MDS shouldn’t interfere with his physical therapy unless his blood count goes down, then they will give him a transfusion. I try to understand what she is saying, but when he experiences shortness of breath and exhaustion after 5 minutes (even when the count is up), I disagree that MDS does not play a factor. Maybe I am just not understanding this disease. But in all honesty, I gathered that his prim. doc isn’t much more informed than I am (so to speak). I think she just confers with the oncologist and does whatever she says. I am not bad mouthing the doc, I am just stating what I seem to be experiencing.
I do know that he is taking meds in the form of shots every week. It is Aranesp and that his Hemoglobin count was 8.5 so they are doing another transfusion.
I guess I didn’t mention that my father is also a Type II diabetic, but since he has lost 50-60 pounds from surgery and infection complications and overall weakness, they let him eat whatever Kathy brings and have him on a high calorie diet and insulin.
Kathy got a copy of his medical records and is sending me a copy tomorrow. She is currently working to try to get him into Loyola or Hines. I will be trying to call the oncologist tomorrow although she, unfortunately, was very short with Kathy and has not been easy to work with. I hope she will answer my questions regarding his situation.
Neil, if you are reading this, I hope you got my email as I would be very grateful for the info. you offered. If you did not get my email, please let me know.
thank you all and keep the support coming, it means the world to me right now. I do not want to alarm my dad in any way, and the desire to keep his spirits up is there, but unfortunately, my dad is depressed. He has been in a hosp. for 4 months now (almost continual) and feels a real loss of control over his life. He is a grumpy bear as it is, so keep the prayers going. We have finally gotten him to talk to a psychiatrist, and that seems to help, I hope.
Karen

[sarah]

Karen, Hopefully tomorrow you will get some answers to your questions. Will keep your dad in our thoughts and prayers.

[Suzanne]

Hang in the Karen, the disease itself is complicated but it is even more so when other factors like recovering from colon cancer and dealing with diabetes is in the picture.
Sounds to me like for some reason they have decided that whatever form of MDS he has is not the most important problem right now. No matter what I would get a hemotologist with MDS experience on board here if to do nothing more then to reassure you that the most important issues for you father are being treated first and that there is time to deal wiith the MDS later.
I have not seen my primary Dr. for anything except and ear ache since I was diagnosed. I haven’t even seen my local Hemotologist since I started being treated at a center of excellence. However many are treated with a combination of local hemo’s cooperating with a C of E. I have not heard of any working with primary Docs. keep advocating for you father until you feel comfortable with the people advising him and caring for him.

[Neil]

Hi Karen,
The first few weeks or months are the most difficult for MDS patients/caregivers. This is a new dimension added to ones life.
Getting up to speed on his particular class of the disease is important. There are many of us here you can call on to relate experiences that might parallel your Dad. Getting to understand his particular situation is important.
An experienced hematologist is very important. He/she will have the knowledge on the options to treat his class of MDS. His oncologist is also a very necessary member of the team. Remember the typical oncologist treats a variety of cancers. They see a large number of patients with a variety of cancers. A hemo specializing in MDS has fewer patients and tends to provide more time to those he/she has. That was the reasoning behind suggesting a conversation with Dr Raza and/or her staff. She can provide much info.
Once his classification is known, they will develop a plan to treat him. Those with RA and RARS will follow one type of protocol. Those with RAEB/RAEB-t another. A typical process is to keep the disease from progressing. Then to stabilize counts. Then to increase red cell counts. Then to treat white cell and platelet counts. There are a variety ways the docs will approach a given patient, but getting counts up is usually the primary focus (and blasts down if he has any).
Aranesp is a drug used to increase red cell counts. Hopefully he will respond.
I am also a type II diabetic. Diabetes is something I can control. No alcohol, low fats and carbs, exercise and medication (not on insulin) seem to work in my case.
Once he has an understanding of his MDS it may be easier to deal with. At least it was for me.
His other health issues are significant and the MDS has a potential for complicating them.
Getting his red counts up may help his fatigue and out if breath situation. I frequently get out of breath, but it goes with the territory.
It frequently takes a bit of time to develop a full understanding of a patients condition. In the meantime asking questions an getting the answers helps all concerned.

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