CMML

[Caroline]

I am new here and looking for information. My Dad found out yesterday that his Pre-Leukemia has turned into Leukemia…CMML to be specific. Can anyone explain the disease to me? His Oncologist has applied for him to be given weekly shots of Eprex. If he is not accepted, it will cost him $600 CDN per week. That seemed to be the only course of action that the Oncologist mentioned. Does anyone know exactly what Eprex does? Can it prolong his life? His Hemoglobin was 99 yesterday. He just had kidney surgery last weekend which could explain the lower count.
I will learn as we go along about the medical support for him. Can anyone suggest any helpful natural or dietary aids which we could try? He is 79 years old and has had diagnosed MDS for 3 years. We suspect that he has had it much longer than that.

Thank you for any help which you can give.

[shirlsgirl]

Hi there Caroline!!

Where in Ontario are you from? I live in Hamilton . I haven’t heard of Eprex…found some info though:

http://www.hc-sc.gc.ca/dhp-mps/medeff/advisories-avis/public/2004/eprex_3_pa-ap_e.html

We were worried too about drug costs..my mom was prescribed gleevec which is very expensive..thankfully it was covered. Hopefully, your Dad will have no problem getting coverage. Please let us know how everything goes.

Jody

[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

[Jack_dup1]

Caroline,
I am a little confused about your Dad’s diagnoses. CMML is a pre-leukemia, it is chronic, not acute. You need more information. I have been diagnosed with CMML for 3 years, it has not yet transformed into leukemia. You need more input. Did he have a bone marrow biopsy? Has this hemo. ever treated CMML. Go to a Center of Excellence.CMML affects us all differently, most fall into the MDS category, mine is myeloproliferative. My reds are normal, platelets low (114), WBC 36.5 and climbing. There are others more informed than I am who will help clear up the confusion.
Good luck and keep us informed.
Jack R.

[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

[Jack_dup1]

Hi Caroline,
The problem is not “your being able to figure this disease out”, it is that the Doctor’s can’t figure this disease out. Us CMML patients are like snowflakes, no two are alike. The only thing we have in common is that it usually affect two out of three of our counts, with me it is Platelets and WBC, I have never had an abnormal RBC count. Like a lot of these diseases, CMML used to be called pre-leukemia. When first diagnosed, I had low platelets (72,000) and low WBC 3.2, now my platelets stay around 100k and my WBC increases every month slowly (36.5). I guess I’m lucky for now, I am able to work, which requires a lot of travel. My only real symptom is exhaustion, which comes and goes.

If I have learned anything over the last couple years is that you have to bother the Doctor, ask questions, and if you don’t understand the answer, ask again. You have to be assertive. A lot of older patients think of the Doctor as some type of God, and we mortals shouldn’t do anything to offend or bother them. Any good Doctor will welcome questions.

Like I said in my previous post, some of our counts go down (MDS) or up (Myeloproliferative Disease), I’m over simplifing, but that is why they don’t know how to catagorize us.

After 3 years I’m still as confused as you. I wish your father all the best, and am sorry I can’t be of more help.
Jack

[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]

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

[gemloyear]

Hi caroline, I’m glad that your gov. approved your Dad’s eprex.My husband has been on procrit and now aranesp to build his blood. Both have helped considerably.His hbg & rbc have come up and are pretty stable. But his platelets are going crazy, the highest in over 2 yrs. From 32000 in jun. to 295000 this week !!! His wbc came up to 43.5 , this really concerns me.I guess at this point nothing surprises me anymore.So far he is only on supportive care as he is 76 yr.old.
I’m optimistic as there are some promising new meds. about to be released that are mild ? enough for older folks.
I pray that your dad responds to the eprex and have faith that there will soon be new meds released that will keep him going for many more years.
Ellie

[lindajo]

Caroline, I don’t know what information your doctor in Canada is required to give you.In the states they have to give the patient copies of anything we request in writing.

Ask for a copy of all tests. That way as you learn more of the disease language, you can look back and see where your Dad’s counts were and where they are now. Especially learn to read the Complete Blood Count report (CBC) and the bone marrow biopsy report.

Go to the bottom of the page and click on the MDS Website tab. Go to the home page and click on links. There you will find the website for the Aplastic Anemia -Myelodysplastic Foundation. There site is http://www.aplastic.org Order their information packet. They will accept any donation that you want to give. I don’t know if they charge for packets sent outside the U.S. Their information is the easiest to read for non-medical personnel.

It will take a little while for you to learn what the doctors are talking about but we will be here to clarify what we can.

[Caroline]

Thank you Ellie.

I was told also that there will soon be new milder medications released which will be easier on Seniors. Let us hope that we will see those drugs in action.

Thank you for your prayers. I will pray for you and Glen all the rest of you as well.

Caroline

[lindajo]

Caroline, I hadn’t looked at the MDS website for awhile. They have some neat new things. Once you get there go to About us clink on that link. Then click on how we can help and that page tells you how to order their informational packet.

It also has a Webinar presentation. You will find it under Events link. That is a movie type format that will download to your computer to explain MDS. The presentation that was given by Dr. Mikkael Skeres of the Cleveland Clinic, A MDS Center of Excellence(COE), at the MDS convention in Maryland in July 2004 is there. It will help a great deal in your understanding of the disease. Good Luck Lindajo

[shirlsgirl]

Yay!! I’m so glad the gov. approved Eprex for your Dad! (can’t imagine having to pay $600/wk out of pocket) Hope your Dad sees favourable results.

My mom asked her doctor for a printout of her bone marrow biopsies and he was happy to give it to her. The first bone marrow, he was able to e-mail her the results and the second one he printed out a copy while she was in the office. She also receives printouts of her monthly cbc’s. If your Dad asks his doctor, he should be able to get a copy at his next visit. It sure helps to have a hardcopy to refer to and for researching the internet. Like you and Jack, I find this disease so confusing. I like the snowflake analogy..how true!

[Caroline]

Lindajo and Jody I will try all of your suggestions. I like the snowflake analogy as well.

Again, Thank You All.

I will ask for as many results as they are willing to give to me when we go for our next appointment which should be Thursday or Friday when Dad gets his first Eprex shot. On the phone today, the Oncologist’s nurse was most helpful. Now that she has permission from Dad to give me information, she includes me in the loop and said that she will telephone me every time she telephones Dad and Mom so that we all get the same information. That was such a relief!!

You are all so helpful. I don’t know how to thank you. I don’t mean this disrespectfully towards my friends but I have gotten more concern from the folks in this forum and from some of my customers who order from my store over the internet than from close ‘friends’ who have known my family for many years. I wonder why that is? I have one dear friend who acted as though she was bored listening to me when I was telling her about Dad. The very next morning she emailed me one of those tear-jerking emails about love and loss. Let me say, her timing could not have been worse. Have any of you encountered the same thing? I found that the same thing happened when my daughter had a horseback riding accident and was brain injured for 2 years. Maybe it is human nature.

Caroline

[Suzanne]

Some people have a great deal of difficulty dealing with serious injury or illness in people they know and care about. I always figured they approached it and me the best way they could.

It is not only CMML that is like a snow flake. It is most of the other MDS diseases too. We each are so different-symptoms and reaction to treatment. I suspect a big part of learning more about these diseases will be figuring out what causes the differences. For example for those of us with RAEB-some have WBC’s that are too low and others have numbers that are way too high-go figure!

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