[Caroline]

Jodi and Jack,

I just received a phone call from the Oncologist. The government has approved my Dad for Eprex. He should be able to start treatment on Thursday. He will get his first needle at the Dr’s office and since my Mom is Diabetic they said that she will probably be able to administer his other needles weekly at home. They said it would take 3-4 shots to see if Eprex works.

Jack….I had a chance to ask how the CMML came to be. I was told that for the past 2 years Dad had MDS. This past summer his blood tests started showing changes and that was why they did another Bone Marrow Biopsy. The Biopsy showed CMML. Now they will try to promote red blood cell production with Eprex and possibly other drugs if the Eprex does not work. There is a chance that the CMML can progress into another more Acute form of Leukemia in the future but that is not a definite.

I will keep you posted as to how Dad responds to the drug.

Caroline

Caroline

[Caroline]

Jack:

You have been a wealth of information. THANK YOU!!! Having a non-medical background myself, ‘over-simplifying’ helps me to better understand.

Next time I go along to the Dr. I will ask my questions. You are right about the older generation and their utmost respect for Doctors. My folks are elderly and European.

I am very thankful that I found this forum. The information in here has helped me very much.

Caroline

[Caroline]

Hi Jack,

I am confused about the diagnosis as well. I think I should see if the Oncologist would be willing to see me alone so I can try to get some questions cleared up. With Dad sitting right next to me, I found it hard. He has asked me not to ask any questions…so that we don’t bother the doctor.

My Dad was diagnosed with MDS 3 years ago and has gone to see an Oncologist every 3 months since. He had a Bone Marrow Biopsy 2 years ago. He had an ultrasound done of his spleen this past summer. About 6 weeks ago he had another Bone Marrow Biopsy done. Last weekend he was taken into hospital with Kidney Stones. He was told that he has had these stones for up to 20 years and his kidneys have not been working properly for several years. He is now scheduled for laser kidney surgery at the end of October. I brought him home from hospital last Monday. On Tuesday I took him to his Oncologist for his routine visit. The Doctor regretted to inform us that his MDS has changed into CMML…”A very slow moving cancer” was how he described the condition. He said that there is no cure for a 79 year old man but he did apply to the government for Dad to get Eprex which would encourage red blood cell production. He had applied 2 months ago and just 2 weeks ago the gov. asked for a copy of the Bone Marrow Biopsy Results. Now it could take another couple of months for a reply. Since Dad needs kidney surgery in a month, Dr. wants to build his hemoglobin up to 120 with transfusions. Dad had one transfusion 2 months ago when his hemoglobin dropped to 90. I was told that 100 is as low as the Dr. allows the hemoglobin to drop before he begins transfusions. We were also told that his WBC is creeping upwards which explains all of his respiratory infections lately, his platelets are low which explains why when he gets a little cut, it can take up to 1/2 hour to stop the bleeding and his RBC is low which explains why he sleeps up to 18 hours a day.

I have spent countless hours on the internet over the past week trying to figure out how CMML works. It is very complicated for me to understand especially without any numbers from Dad’s tests. We have another appointment in 2 weeks. I am sure that I will have a clearer head this time and I have made a list of questions to ask. Maybe then I will be able to figure this disease out.

One other thing. The Dr. told us that CMML is categorized as an MDS but since it is so different from other Leukemias, they are considering making it a disease on its own.

I appreciate all of your help.
Thank you.
Caroline

[Caroline]

Hi Jodi,
Thank you very much for the information on Eprex. In the US it is called Procrit. Same drug….different name. Our next appointment is in 2 weeks so we may have an answer by then.

We live in Cambridge. The only drug our Oncologist suggested was Eprex. I didn’t ask about any others. I just sat there dumbfounded when he told us that Dad now has CMML. My Mom usually goes along with Dad but this time she was very sick and is waiting for very delicate surgery in Hamilton ASAP so I am filling in for her with Dad’s medical concerns. I was glad in a way that I was there and not my Mom this time. I dont’ know if she would have been able to withstand the shock. Maybe the Dr. is going to start Dad with this drug to see how he responds or perhaps Dad is too old to use any others. This past visit was the first one where he allowed me to come along with him. Until now, they tried to protect me from any ‘bad news’….Bless their hearts. From here on in, I am going with him so I can learn more and be of as much help as I can.

I have another question. I have noticed that most of the people in this forum, including you have a description at the bottom of each posting. Where do you get all of this information? The only piece of information I was given was that Dad’s MDS has transitioned into CMML and that his hemoglobin is 99 which is too low and he needs another transfusion. Is there a report that I can ask the doctor for with all of the different test results?

Thank you again for your help.

Caroline

[Caroline]

Hi,

I would also be interested in being added to a CMML Mailing List please.

Thanks,
Caroline

[Caroline]

Jimbob,

Do you think that this diet would help a 79 year old man? My Dad was diagnosed with CMML yesterday.

[Author]

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