Hi,

I'm sorry no one has responded to you.  I find these boards a little confusing and sometimes miss post from CMML patients.  I'm sorry you are having the problem with finding a dr that does not treat CMML.  You really need to find a hematoligist who deals with Myelodysplastic Syndrome.  CMML is treated with the same chemo as Myelodysplastic.  I'm not sure what you are referring to when you say a mass in you back?  I haven't heard of anyone having CMML on gleevec, not to say it won't help you.  I know some of the people with CML have been on gleevec and had success.  I highly recommend you find another Onc/hem.

I was dx with CMML Jan 07.  I also have low platelets and get platelet transfusions.  A couple of first things they try are Decitabine and Vidaza.

I can't believe there isn't hope for you.  If there is life there is hope.  I'm 62 and I'm looking at a bone marrow transplant.  Be determined and keep looking for another dr.

Hang in there,

Diann    

I too had symptoms for several years before getting a diagnosis of cmml. I am a 60 y/o woman and find the fatigue

annoying but doable. It is frustrating to have to pace myself. I want to spend a lot of time with my very young grandkids. Also my mom is 92 and starting to lose her independence and needs my help (and lives 40 miles away). I have a great supportive husband who is learning how to cook after realizing that not only did I not have the energy, I didn't have much appetite.

Actually, I'm not anxious to start treatments. Last Nov. before diagnosis I went through a series of iron iv infusions that really helped for a brief time.

They took almost 6 weeks to kick in, but I had the zip to do a lot of Christmas stuff with the family.

I use my garden for personal therapy...once again,pacing myself is the key.I have great faith that I will last many years.

Much of what I read online scares me too, so I limit myself in the searching that I do.

You are not alone.These chat/blogs are helpful.Try to find things that make you laugh.Find an oncologist who has cmml patients in your area. Dosen't make us feel any better to have a rare ancer does it?

Perhaps I am being too casual about my diagnosis, but until my bloodwork gets worse I am ok to wait for treatments.

I'm glad for your mom that she has had good results from medication. Certainly I will mention it at my next visit to the oncologist.

Thanks.

My Husband was diagnosed with CMML in April 2008. We came out to Seattle, to the Seattle Cancer Care Alliance.We are from Florida. He had a double Umbilical Cord Transplant 2 weeks ago, August 26, 2009. he did not have a family match or an international donor. The SCCA does all the work for you, and was the pioneer in Bone Marrow Transplants, the only cure for CMML. Yes, it is true that it is a potential cure. That is why we came here. Our insurance company is covering the cost of living here, and the procedure. You must live in Seattle for a few months, conditioning time, and at least 100 days post-transplant. The social workers at the SCCA can help with logistics.

My husband is 55 years old. He is doing pretty well, with complications that are inevitable. Transplants are difficult, and there is no data for CMML, but there is hope! Go to their website at Seattlecca.org to find out more. It is a very rare disease and few others know about it. You will need a caregiver for the entire procedure. They need to be dedicted, and can not work or have other obligations at the time.

He had this disease for quite some time before it became neccessary for him to go through with the transplant, so as long as your disease is not accute, you have time to make plans, from what experience I know. It is important for you to get with doctors who know your disease.

I am going to copy this post and give it to anyone else with questions about CMML. I'm no expert, but I'm living with the experience, and learning as I go. I wish you all the best, and hope that you find the answers that will lead to your cure.

Hi Jon,

According to the staff at SCCA, it is not necessary to make plans well in

advance. They are used to people contacting them needing immediate care.

Another thing we found out is there is no such thing as an "emergency

transplant".

We found out in February that he would need a transplant, and he had several

rounds of Chemo with Vidayza before we came to Seattle. It worked well for

him as far as getting his WBC counts down. They want you to be in remission

if possible. The transplant is very serious, so you have to be committed.

When the day comes it's very easy to be committed.Let's face it, it's the

only option!

The SCCA has a doctor on duty to talk with potential transplant patients.

They actually call you back the same day, or the day after you call, and

explain everything. You can check out this site to find out more information

from them.

http://www.seattlecca.org/diseases/bone-marrow-transplant-overview.cfm

I have several emails about my recent posts. If you don't mind, I may copy

this for the others interested in this information.

I understand the frustration about CMML. Even some doctors called it CML

during previous hospitalizations. It was so upsetting that so few people

knew what this was.

I hope that you will find the answers to your questions, and the cure you

need. This was the only answer for us, and my husband is doing well. We have

a long road ahead, but we are ready for it. Now it's your turn to take

control of your health.

Love, luck and prayers!!

Rose

Hi Jon,

My Dad has been released from hospital today after his CMML flared up 5 days ago causing terrible leg pain & requiring several platelet & blood transfusions to help him settle.

During my last visit to him he advised that for his rashes, the best thing that works to soothe is Mylanta (Australian reflux/heartburn remedy). Thats after trying several low dose steriod creams & prescribed higher dose ones.

I've only today found this web forum & your posts. I hope you've been able to find a more supporting & knowlegable Dr & specialist.

My dad's history is:

He is 59 yo & was diagnosed with CMML about 5 1/2 yrs ago following a routine blood test. Over these past years, he's been having 3 or 4 monthly blood work & annual bone marrow tests to monitor his developing illness. So we've had time to research the cancer a bit & were aware that at some time in the future he'd progress into the treatment phase.

Just last fortnight he'd received the call from his Dr that his bloods had dropped to the point of requiring treatment. He had a bone marrow biopsy & was scheduled to have the appointment to get the results on Friday evening when he awoke early hours Friday morn with the leg pain which resulted in his need to go to hospital.

So we are just heading into the unknown of his future. His Dr is looking into a clinical trial over here in Australia that works on the platelets, & is not due for a followup now for 3 weeks all things going well.

Jon, I truely hope you find the support of a very good Dr.

Sincerely

Lauren

I am been on the boards before when my husband had dbl bulky diagnosed in aug o6 and it as been a bumpy road, every fully recovering or remission a lot chronic blood problems most likely a underling blood disordered, last fall we seem to take a big turn and things seem to be going in a direction no   prior b cell  sweats, fever or weight lost. fatigue yes, but all that seem to come on and fast, the last few months and visits to the doc and hospital from a sore that almost made him lose his leg, and soaring white counts I began to beg something to be done a bone marrow something,  he lost weight and in the last few months over 49 some lbs. and then the pain I called it the traveling pain.it just moved from the back to the shoulder to lower back to the stomach to the kidneys and stomach, to wear he was so weak I thought he would die.. and i know now he would if he hadn't taken to the U from home,we soon found out he has cmml acute blastic, and the put tubes down his belly cather in after swelling in   legs, stomach and genitals a gain of 27 lbs in 24 hours. and no relief from the pain with a pain shot every hour or so and nausea, then came the drip then came blood plalets and then chemo started for 24 hrs, day  supportive care i think...to get him out of pain and perhaps knock out the cancer, can someone tell me more about this cancer, his tummy is full of enlarged lymph nodes up to 5.5 cm and lots of blockage and even a little jello caused pain... his odds were he would last a week the way he was but the way he is now doesn't look good either, he is think, weak low counts low blood pressure and fevers up to 103.2