The Leukemia & Lymphoma Society - Fighting Blood Cancers
74 Replies Latest reply: Oct 7, 2012 7:52 PM by wgaccrensh1 RSS

Looking for others with CMML

Pepper Registered Users
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Hi. I am looking for others with CMML. I suffer on almost a daily basis with swelling in the legs and feet. I let my housework go undone because if I am on my feet more than 2 hours the swelling begins. Before I was diagnosed, my legs would double in size. My doctor was fearful a blood clot would form. She would put me to bed for a week. It is so painful to walk and I can't put shoes on even my flip flops.

  • Re: Looking for others with CMML
    DennisD Registered Users
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    Pepper,

     

    Yep.  I've got CMML and I've got that symptom:  painful swelling of both legs/ankles (usually one or the other at a time)  It is excruciating and I have to stay home from work and keep my feet up when I'm going thru one of my episodes.

     

    My oncologist just scratches his head and attributes it to odd platelets.

     

    I'm expecting (nd praying) that my upcoming stem cell transplant will cure it.  It's actually my worst symptom as yet.  Worse than anemia.

     

    Do you take any other treatment for it than rest?

     

    Are you being treated for your CMML?

     

    Dennis

  • Re: Looking for others with CMML
    Grog Registered Users
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    Hi Pepper

     

     

    Hang in there no body wants to be here but we wellcome you.

     

    Love Gene and Joy

    My wife also has CMML and was Dx end of Sept and begining of Oct 09.  She also had swollen ankles, bruising and little bleeders. I told her  to go to Dr and that was when she was Dx. She still has problems with  ankles swelling but not as much as at first. The last time was about  three weeks ago it lasted for about two weeks. Her last visit to see Dr  was today and Dr said she was doing great and would not have to come in  for 3 mouths. She was treated with Rituzan for autoimmune problems and  her blood counts are very good not normal but very close except for  platelets which or still low but not dangerous. She is on a wait and see  before Dr tries the chemo drugs. Dr told Joy to take Non aspirin for pain no aspirin as would miss up her platelets for 7 days or ibuprofen again because of her low platelets and the effect on them. So check with your Dr before taking anything.

     

     

    Love Gene and Joy

     

    Message was edited by: Grog  OOPS I typed the wrong year 07 it was 09.

  • Re: Looking for others with CMML
    Pepper Registered Users
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    Hi. Thanks for getting back with me. I had to switch doctors. The one I had was the most insensitive doctor I ever seen. He never listened to me nor even cared to get to know me. I can not recommend MD Anderson Cancer Center for people with CMML. I took out and paid for insurance for years in case something happen to me where I could no longer work. That doctor was about to jeopardize my insurance. My profession requires being on my feet 12 or more hours and right now I stay off my feet and my legs still swell so bad that I have trouble walking.  My former employer laid me off while I was in the hospital. The hydroxyurea I take causes me mental confusion and memory loss.

    • Re: Looking for others with CMML
      Grog Registered Users
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      Hi Heather

       

      Hope new Dr works out, it's inportant to have one you can trust and talk to.

       

      Hang in there we will pray for you and your family.

       

      Love Gene and Joy

  • Re: Looking for others with CMML
    All4DK Registered Users
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    Hi Pepper,

     

    My mother was dx in Oct 2008 with what was diagnosed as secondary CMML (most likely caused by chemo from Breast Cancer treatment many years prior) and was in pretty bad shape (constant transfusion dependency, heavy breathing, loss of appetite and weight). As we live in the Metro New York area, we went to all the big hospitals in NYC and I forced ourselves on the best doctors in the city until we got answers!

     

    Are you currently being treated with anything? I read that you haven't had the best experience at MD Anderson. One thing that is characteristic with doctors we've met at the largest hospitals was that our initial meeting/consultation was very impersonal. These doctors have seen COUNTLESS patients and have to almost keep things very professional, just because of the amount of sadness they must encounter. One thing that we do is try to make our initial meeting a question/answer session only and to set up for a follow-up which almost always becomes more personal.

     

    If you'd like to speak offline about anything I would be more than happy to. My email address is in my profile.

     

    I will certainly keep you in my prayers,

     

    Joe

     

    Message was edited by: Marie

  • Re: Looking for others with CMML
    MaryCarol Registered Users
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    Hello Pepper. I have CMML , diagnosed 2 years ago. I am fortunate in that my worst symptom is fatigue. So far, no swelling anywhere. I find that it has been helpful to pace myself with activities. My housekeeping has gone down the drain.My 'big' activity the other day was emptying out the refridge, tossing and cleaning it. That was it for the day.

     

    My husband is helpful but has his own health issues and is visually impaired, so his cleaning efforts are iffy but appreciated.

     

    Really, I have a hard time figuring out what is just plain sick, and what is CMML. My immune system is wacky. I tend to run a low grade fever often and sweat buckets. I know that is the CMML, but still it is hard to know what's what.

     

    Anyone else feel this way too??I hate to run to the doc all the time.

     

    Mary Carol

    • Re: Looking for others with CMML
      Pepper Registered Users
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      Hi. Thank You for responding. It took me 15 months to get my SSDI with the help of a legal firm. My former employer laid me off while I was in the hospital. According to the doctors, this is an incurable disease. I have noticed the more stress I have the higher the white cell count. I try to eat healthy and drink lots of fluids with this hydroxyurea.

    • Re: Looking for others with CMML
      Grog Registered Users
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      Hi MaryCarol and Pepper

       

       

           Mary my wife also has the low grade fever at night with the night sweats. She started treatment with Dacogen the first week of Aug 10 and has been sick most of the time sense. Last Monday she need transfusion of red blood cells because her red sell count was so low 7.4. She was treated with Rituxan in June for Audio immune problems and it seems to of worked as her combs test was negative. This is test to see if white cells where attacking red blood cells she had been positive before treatment with Rituxan.

       

           Pepper good to see you on here. My wife and I believe that stress caused her CMML. Glad to see you got your SSDI.

       

      My wife's birthday was today the 20th but we only went for a car ride around the lake as she didn't feel very good today. I got her two yellow roses because yellow is her color.

       

       

      We will keep you and the others on this web site in our prayers.

       

      Love Gene and Joy

       

      I hold everything when I hold her in my arms.

      • Re: Looking for others with CMML
        MaryCarol Registered Users
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        I also believe stress was a huge factor in my cmml getting going. The doc we saw in Seattle said that I was born with the mutant cell in my bone marrow and it was just waiting to get set off.

        You guys are such a great team. I am thankful for this board to talk with others with cmml.

        thanks

        Mary Carol

  • Re: Looking for others with CMML
    jsitko Registered Users
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    Hi,

      I am a 59 yr. old female teacher dx with CMML in March 2009.  I went to Geisinger Medical Center near my home first.  My oncologist was baffled by my symptoms. He had been following me with low platelets and whites since 2002. My counts had always remained stable.  Then I was under terrible stress in 2008--my dad's house burned.... My whites rose drastically as did my eosinophils.  He sent me to Sloan Kettering and Mayo Clinic.  They both agreed on the dx, but didn't agree on treatment.  Initially I was treated the Gleevac, but since I didn't have the gene mutation it did nothing for me.  Then last October I began Vidaza shots every month.  My Bone Marrow biopsy improved greatly.  I had the shots for  7 days each month for 7 months.  Now I go back each month for a CBC while my counts are stable.  I have another appointment on Sept. 1st and they will decide whether or not to treat again.  I feel good overall, except for terrible hot flashes and some bone pain.  I didn't have a bad reaction to vidaza the first 3 months, but then the last 4 treatments caused vomitting on the treatment days.  I would be happy to continue with the vidaza as long as it works. It is expensive, but insurance has been covering it.  There are so few people in the world with this disease, it is very scary.  Please feel free to contact me if I can be of any help.

    Good Luck.

    JS

    • Re: Looking for others with CMML
      Pepper Registered Users
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      Hi. When I describe to my husband that it hurts to the bone, he doesn't believe me. That is what it feels like. Only people who have CMML knows the pain.

      • Re: Looking for others with CMML
        Grog Registered Users
        Currently Being Moderated

        Hi everone

         

        Joy was in so much pain that when we went into do bloodwork today they also let her see Dr which she was not suppose to see till next Monday. Her left index finger was swollen, red and very painful to touch. Her right angle was also swollen, she had sores in her mouth that made talking and eating very hard to do. But the good news is her blood work was great she has not had platelet counts above 56 sense last Aug 09 they where 552, red cell count also normal. Monocytes still hi. But Dr said that the platelet count showed that the Dacogen was working she also said that she had never seen anyone respond so quickly to it, (I thank that the prayers at church had alot to do with it). She said that the swollen finger and angle where the result of the fast improvement and that bad cells were braking up so fast that they where collecting in the joints. Dr put her on antiinflammation drug to help clear this up. The Dr was very encouraging and seemed happy with the results. Will keep you updated. It is so hard to see her hurting so much. Will do another round of dacogen nest week.

         

        Love Gene and Joy

         

        Will keep you in our prayers.

        • Re: Looking for others with CMML
          MaryCarol Registered Users
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          Wow. I hope the pain gets under control . Sounds like good news that the meds are working. I have had some trouble with sores in my throat, and itis bad. Very hard to get food past the sore places...kind of ruins the appetite anyway. The fruit flavored Boost stuff isn't bad, and gets some nutrition in.

          best wishes and prayers sent your way.

           

          Mary Carol

          • Re: Looking for others with CMML
            Grog Registered Users
            Currently Being Moderated

            Thanks MaryCarol

             

             

                   We set and watched Love Letters to God tonight we both were crying by end of movie. Dr prescribed Magic Mouthwash today and some other things, so hope she is feeling better soon. She is suppose to work tomorrow night but she has already said that if she doesn't improve a lot she won't be able to. She called work and started the paper work on taking the Short Term Disability she gets 60% of her pay while on it.She can do this for 25 weeks.

             

             

            Love Gene and Joy

             

            When she walks into the room I fall.

        • Re: Looking for others with CMML
          klassykat54 Registered Users
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          Gene and Joy,

          I'm sorry to hear that Joy is having pain while on the dacogen. I have been getting that for one week a month for 9 months now. I have been very fortunate not to have any symptoms from the chemo. I have responded well and am in remission, but the doctor at Mayo says I have to stay on the chemo  until I get a stem cell transplant. Except for a little fatigue I feel 90% better since I started the chemo than the whole year before, when I was sick. I guess the only cure for CMML is a stem cell stransplant. I find this page very encouaging. I see people on hear who have been diagnosed for more than 2 years. the doctor told me without a stem cell transplant I only had 15 months to live. But I believe God will get me through this. We have to stay poitive.

          Marcia

          • CMML
            sonia Registered Users
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            I see that you wrote to Joy.  I believe her battle with CMML ended last December 2010. I think about Gene and his loss.

             

            My mom was diagnosed with CMML in January 2011.

             

            She had her spleen removed as it was sucking up all the platelets and growing quite large.  Her platelet count is normal now that the spleen is gone.

             

            If anyone out there has a large spleen with low platelets, get it removed before it bursts.  Also get your kidney function checked out.

             

            If you are on prednisone, be aware of the higher risk of compression fractures in your vertabrae and take osteoporosis preventative drugs or calcium magnesium supplements.  My mom's fractures are causing more back pain than the CMML.

             

            If we had the spleen removed from the very beginning without being on prednisone to increase her lost platelets, we could have prevented the back pain.

             

            In January 2011, the specialist said with this rare disease that she may only have 6 months to 1 year.  Well, we are confident that she will be fine until next year. She is hanging in there at age 64.  She is looking forward to turning 65 in March 2012 to collect Security Pension.

             

            Sonia

      • Re: Looking for others with CMML
        MaryCarol Registered Users
        Currently Being Moderated

        I used to have that bone pain, and it was creepy. Hard to describe. My family doc had prescribed Cymbalta to address anxiety I was having (my husband had to have open heart surgery while we were waiting for a biopsy result). At any rate, the Cymbalta knocked out the pain and helped with irrritable bowel issues. Go figure. Ask your doctor. Really.

         

        Mary Carol

      • Re: Looking for others with CMML
        Grog Registered Users
        Currently Being Moderated

        Hi Pepper

         

        How are you doing. Sense I'm the caregiver I don't know either how much it hurts but I can see the pain in my wife's face. She is very good at hiding what's going on with her but this just to much for her to do that. I pray for her several times a day. I pray when I fell like I need to and when I feel like I don't want to. We will keep you in our prayers as well.

         

         

        Love  Gene and Joy

         

        God our prayers go out to everyone on this web site.

  • Re: Looking for others with CMML
    sonia Registered Users
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    My mom has been diagnosed with chronic myelomonocytic leukemia.  Is that what you are calling CMML.
    She has a rare case with very low platelets at 5 with an enlarged spleen.They cannot give her chemo as the platelets would drop to nothing.

     

    She may be able to remove the spleen to bring up the platelet count   There is no cure.

     

    I found a newsman Ed Bradley who had leukemia with an enlarged spleen.  When they removed it, his body shut down and passed away.

     

    If you have CMML with no signs of low platelets, a bone marrow transplant could change the outcome.

     

    I believe she is at the tail end of this disease.  It started out in 2007 with low platelets and a somewhat large spleen.  They left it going for too long before giving her a bone marrow test.Then in 2010 a bone marrow test showed myelodysplatia.myleproliferative disorder.

     

    In 2011, it was diagnosed consistent with CMML

     

     

    Her 5 platelet count is the concern as she could spontaneous bleed for no reason.

     

    Does anyone have CMML with enlarged spleen and platelets below 10- they are giving her a couple of months to 1 year.

    • Re: Looking for others with CMML
      dinace1 Registered Users
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      Sonia, My mother was diagnosed with CMML this year too, she is having a mild chemo called Cytrabine, 10 days, 2 injections a day and then a few weeks break then 10 days on again, we are hoping for a remission, We are from the UK and to be honest our doctors here do not now a lot about this rare form of Leaukemia. Mum has an enlarged spleen but her platelets have not gone below 10, I think 14 was the lowest.

      Doesn't a platelett transfusion help raise your mums count...

      Thinking of you hun. It's a very worrying time.

      Denine

  • Re: Looking for others with CMML
    Deanotsuki Registered Users
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    Hi Pepper,

     

    I've had swelling in my ankles nearly all day for the past 4 days. Do you know what causes this?  and how do you get the swelling to go away?  I was diagnosed Nov. 2009 for cmml.  Usually if I get the swelling it comes around late evening or if I had to sit and work on the computer for 3 hours or more.  I also get reddish hard lumps (1/2" in diameter) on my legs and we don't know what causes those as well.  I'm not on any drugs but have been seeing a couple of naturopaths and have been taking Coriolus Versacolor 1200 mg, Vitamin A 50000 iu, Vitamin D 10000 iu, zinc 50mg, Wobenzyn N six capsules/day and X-FLM 2000mg.  I tried hi dose vitamin C treatments 75grams per treatment twice a week for 3 months and kept blood work stable. I got off of it because the last 2 weeks of treatments I felt junk for the last half hour. (my CBC did get better after I stopped the treatments.)  I do a CBC every month and certain things fluctuate but over all everything is stable.  Monocytes are usually high, segs and neutrophils are lower than normal, red blood cells are between 11 and 12, platelets have dipped to around 130.  My energy level is normal. I used to catch colds but since I increased my vitamin D intake I don't get colds. (I try to be between 75 and 100). 

     

    Hope you are well,

    Warren

    • Re: Looking for others with CMML
      Pepper Registered Users
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      Hi. I wouldn't give up even though the Oncologists couldn't help me with the swelling in my lower legs and ankles. I went to a Naturopathic doctor. He looked at my blood test and he sees bacteria infection where the Oncologists see Leukemia. He put me on a low carb diet, no sugar, no pork, little beef, and I take ADP with emulsified oil of oregano made from Biotics Labs. He told me this will kill bacteria and parasites. I limit myself to 150 carbs per day. There are times that I may go over and the swelling starts but it never gets as bad as it used to. I hope this helps. Oh by the way, I do give my dog the ADP also to help prevent parasites.

      • Re: Looking for others with CMML
        Deanotsuki Registered Users
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        Hi Pepper,

         

        I took your advice and it works!  Thanks. My ankles don't swell up hardly at all, only if I have to sit for hours.  But lately parts of my feet have been getting "pins and needles" feeling.  Usually the area around my big toe and on the inside of my foot.  Had my rolfer work on it and it didn't really go away.  Have you had any of these symptoms?  My naturopath said it could be inflammation pinching the nerves going down my legs. 

         

        Warren

        • Re: Looking for others with CMML
          Pepper Registered Users
          Currently Being Moderated

          I am so glad you got some relief. Yes, I do have the occasional toe flares. I noticed every time I go a long period of time driving to my mom's house or visiting her my ankles tend to swell but never as bad as it used to be. For one, at home I sit in a recliner with my feet up. My mom doesn't have a recliner for me to sit in. I told her that I must have one to help keep the swelling down on my ankles. I hope she buys one next time I visit. I can walk the dog around the block with no problem as long as I am moving. Sitting without my feet elevated ot standing too long in one place tend to start the swelling. I am happy though it is not as bad.

           

          Fran aka Pepper.

  • Re: Looking for others with CMML
    g-papaul Registered Users
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    I'm a 60 year old sales professional male getting annual physicals with blood tests. I was Diagnosed with CMML in Feb. 2011. My GP knew it required an oncologist and got the ball rolling. I'm from the Harrisburg, PA area and went to the best local oncologist I could find. The oncologist is affiliated with Johns-Hopkins, Baltimore, MD. My initial consultation with a transplant team at J-H was the end of March. March-April May were transfusions of blood and plateletts as needed determined by my weekly blood draws at the oncologist. I also received 2 courses of Vidaza in preparation for the transplant. I was admitted to Johns-Hopkins on 6/13. On 6/15 started a 5 day run of Busulfan. Today 6/19 starts a 2 day run of Cytoxin. On 6/21 is the Bone Marrow Transplant from my donor brother. Then, 2 more days of Cytoxin. I start down the road to recovery and hopefully cured.

    If I may offer a few suggestions:

    • You and you alone are your best advocate. Read everything you can about the disease from credible sources and question every decision made in your behalf.
    • Question the drugs you'll be given, their possible side effects.
    • Track your blood levels weekly. Transfusions as needed. Failure to heed this will end you up in a local ER with anemia.
    • You'll need an honest assessment of time you'll be out of the mainstream. This will determine use of FMLA, temporary or long term disability.
    • Above all...pray and ask others to pray for you.
    • Joint pain and swelling could be gout.
    • Protect your liver. Drink lots of water. You're going to need a strong liver to process the chemo.
    • Jump at the chance to get a Hickman cathoder installed in your chest...no more arm sticks.

     

    Bottom line is this...it's your CMML. You control the process to find a cure. Don't be shy...ask questions.

     

    Good luck and God bless.

    g-papaul

    • Re: Looking for others with CMML
      dinace1 Registered Users
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      Thanks for your imput, It has helped us a lot. Because of mums age she's has not been considered for a transplant. When you read this your transplant will have been done and I pray everything is okay with you and you brother.

      Things have improved with mum, she is responding to the new chemo drug she is on,  (vidaza) her platelets have stabalised and the blood transfusions have been reduced dramatically. She starts her 3rd course on Monday, then bone marrow tests so hopefully I will have very good news when I speak to you next.

      Thanks again

      Yours

      Denine

    • Re: Looking for others with CMML
      Deanotsuki Registered Users
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      Thank you for the reply.  How did the BMT go?

      • Re: Looking for others with CMML
        g-papaul Registered Users
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        The BMT was uneventful and sort of just like getting another few units of blood. I rested for 2 days and then received 2 more days of Cytoxon. During the last day of Cytoxin you start to walk through the fires of hell. They start initiating bags of anti-biotics, anti fungal anti bicrobials. I keep getting low grade fevers. They tell me it's normal.Not all experience the same side effects. These drugs hit everyone differently. I credit my too few symptoms to prayer. Excellent staff at Johns-Hopkins and following their direction.. Love of a good woman, children & grandkids. All feel G-Pa will be out & healthy next summer, No matter how bad you feel going through treatment...the alternative is a dirt nap and I'm not tired!

         

        I'm currently on DAY 17 after BMT. I have no immune system so I'm on a specialized floor with air pressure 2 lb. higher than ambient. Theory is, when a door to the outside is opened air rushes out preventing the entry of germs. I constantly feel like I have the flu. Just have to deal with it until around July 12. That's the day projected to be the day my own marrow will be producing healthy cells.

         

        Saying around here is "BORING IS GOOD"!

        • Re: Looking for others with CMML
          dinace1 Registered Users
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          Hi

          How are you doing...

          • Re: Looking for others with CMML
            g-papaul Registered Users
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            The chemo side effects are all they say they are. Mucacitis, loose bowl, loss of hair, appetite & taste.You feel like you got run over by a bus! Have to stay positive since they only last about 2 weeks. Then the miracle begins...Day 18 after transplant. blood counts start appearing 50 here, 110 there and keep growing. Not by leaps & bounds but by 20-30 points. Several transfusions of red cells and platelets. A little rash here & there (a little GVHD is a good thing) Hygene is most important. Daily showers, brush teeth after every meal and gargle with 0,9% sodium chloride solution. It is now day 28 and my counts are high enough for discharge today. Now begins living in temporary housing across the street with daily clinic visits for blood draw, treating a fever, anything needed by IV. This will go on for 30-45 days. Then I'm released to home with restrictions. Fatigue is always with you. I've learned how to pace myself.

            It looks like I'm on the road to a cure however, due to the medical restrictions placed on me I'll seek disability.

             

            I pray your Mum is a strong woman, The Vidaza with transfusions will work for a few years. Enjoy her company while you can. God Bless You!

            • Re: Looking for others with CMML
              JohnBugay Registered Users
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              Hi g-papaul, my wife was diagnosed with CMML-2 just a couple of months ago, and is scheduled for a bone marrow transplant in the near future. I was impressed enough with the story that you posted here, that I've re-posted selections from it at this link:

               

              http://johnbugay.wordpress.com/2011/08/01/first-hand-account-of-a-bone-marrow-transplant/

               

              I hope you'll please continue to report on your progress as you recover, and let us all know how things are going for you.

               

              Sincerely,

              John Bugay

            • Re: Looking for others with CMML
              Deanotsuki Registered Users
              Currently Being Moderated

              Hi g-papaul,

               

              Is everything going ok?   I haven't heard from you in awhile.

              I hope that you're doing great.

               

              Warren

            • Re: Looking for others with CMML
              g-papaul Registered Users
              Currently Being Moderated

              I felt it was time to offer a follow up to my BMT to cure my CMML. I was released from Johns-Hopkins on August 19th to go home. Home...a wonderful place to recouperate. No more IV drugs that tear you up. Only a few in pill form to prevent various infections. We had a whole house HEPA filter system and a reverse osmosis water system on our well water installed. I DO NOT leave the house or go in the basement without an N95 mask. If I'm going to the store or doctor I wear disposable gloves too. Wash hands frequently. I finally started eating the last week of August after 6 weeks of eating nothing. I lost 80 LB and feel great. I started introducing food with Campbell's Chicken Rice Soup in small servings. Then went to Chicken & stars. Next was Pork & Beans with Ball Park Franks cut up in them. Breakfast started to include Carnation Breakfast Essentials, Chocolate. The diet has been expanding but not my waist line. I've learned to eat all over again. I will not return to 290 LB!!! There are positives out of this ordeal. My Osteo Arthritis is gone. (They said it could be temporary or long term). I don't need Blood Pressure or Cholesterol meds anymore. I don't need to sleep with a C-PAP machine. All of the anti bacterials & fungals fed me IV cured my athlete's foot and one nail infected with a fungal infection...they rebuilt me! I currently visit my local Oncologist every 2 weeks for check ups. He says the recovery is text book. In December I'll be back down to Hopkins for my 6 month check up and they'll take another bone marrow sample. In June 2012 I'll return to Hopkins for my childhood immunizations. The power of prayer is very strong. Continue to ask God, friends and congregations to pray for a recovery. All things are possible. Stay positive.

              • Re: Looking for others with CMML
                Deanotsuki Registered Users
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                Hi g-papaul,

                 

                I am so glad you are doing great and thank you for keeping us on the board informed on what you are going through.  People with cmml are looking for positive things and this is such great news.  I was praying for you g-papaul, and for awhile there I was getting concerned about your recovery. Thanks so much for keeping us in touch.

                 

                Much aloha,

                Warren

              • Re: Looking for others with CMML
                dinace1 Registered Users
                Currently Being Moderated

                You my friend are the Bionic Man... So ..so .. glad to hear that all is well.. the road is long but your still going forward which is so amazing.. you are a strong man .. I am in awe.

                 

                So are they going to change the text books to state .. there is a cure for CMML?

                 

                We have had positive news re my mother and her battle with CMML.  We are from the UK and Vidaza was finally released in Feb this year, it's called Azacitidine over here. Well mum was one of the first to be put on the drug, 5 sessions later and a bone marrow test has shown there is a 75% reduction in her bone marrow blasts. We know its not a cure but it's the best news we've had since her diagnosis.

                 

                Thinking of you

                 

                Denine

              • Re: Looking for others with CMML
                klassykat54 Registered Users
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                I'm so glad to hear positive things about CMML. I was diagnoised in January of 2011 with CMML after being sick for over  a year  before I finally found a doctor who would run tests. I have been recieving chemo (decitabine) 5 days a month for 9 months now. I am in remission but must stay on the chemo. Doctors want to do a stem cell transplant. My brother is a 100% match but they won't use him since he had a heart attack 4 years ago. I am now waiting for a match on the national donor list. I was given such bad odds of survival since it would be an unrelated match- only 51%. My other option is to stay on the chemo until it doesn't work any more. My church, family and friends have all been praying for me. I try to stay positive. The latest downer for me was that I have to keep working because I am too healthy ( blood counts are near normal) to get social security. Good thing I like my job!

                • Re: Looking for others with CMML
                  g-papaul Registered Users
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                  Marcia,

                  Stay positive. My brother was a 100% match and they gave me a 75% chance. The power of prayer will increase the percentage.

                  • Re: Looking for others with CMML
                    klassykat54 Registered Users
                    Currently Being Moderated

                    g-papaul,

                    Thank you for your encouragement. You are in my prayers. How is your recovery going? they just fond an unrelated donor match for me. I go next week to talk to the doctors. Still undecided whether to go with the STC or just stay on the chemo.

                    Marcia

                    • Re: Looking for others with CMML
                      g-papaul Registered Users
                      Currently Being Moderated

                      Hi Marcia,

                      Recovery is still ongoing. Last weeks blood test showed increases in white & red blood cells but a decrease in plateletts. Doctor wants me back in this week for another blood test. I'm also experiencing some lower bowl discomfort. Doctor prescribed some Prednisone and Dicyclomine. I've also removed all dairy from my diet and I feel much better. The possibility exists that there could be a little "Graft vs. Host Disease" (DVHD) going on but, it could also be the prophylactic drugs I take every day causing havoc with my digestive tract. Good luck with the doctors and your decision. Personally, in my case, I looked at chemo as a band-aid and the transplant as the "fix"...but that's me. Put your faith in God and pray for making the right decision.  

                      • Re: Looking for others with CMML
                        g-papaul Registered Users
                        Currently Being Moderated

                        What a roller coaster ride! When I was released from Johns-Hopkins on August 19th after the BMT I was 100% my brother/donors stem cells. Recovery at home was great. Feeling good, positive outlook till mid October. Started feeling sick to the stomach, loose bowel with much mucus. Local Oncologist started seeing me once a week and platelets were dropping. Received a few transfusions for platelets. November 11th went back to Johns-Hopkins to give up a few bone marrow samples for analysis. November 20th I had a 102.2 fever with a left knee the size of a grapefruit. My wife took me to the emergency room and I was admitted. More transfusions of platelets and red blood cells. They asperated the knee and found nothing but calcium crystals. Prednisone was prescribed and the knee is on the mend. I was released in time to come home for Thanksgiving dinner. Yesterday November 28th the results are in from my bone marrow samples. 75% me and 25% donor. For whatever reason, it is what it is. Wife & I are heartbroken. We thought we had this thing beat...but God has other plans. A second infusion was discussed but they have better success rates by using Vidaza. I start treatments today. If it works we should see a remission in a year or so. If not, I'll be gone within a year. We will continue to trust in the Lord and pray.

                        • Re: Looking for others with CMML
                          sonia Registered Users
                          Currently Being Moderated

                          Be aware that when you are on prednisone it will affect your bones so take calcium magnesium with vitamin D.

                           

                          My mom has CMML and was on prednisone (for a while) to bring up the platelets but they hardly worked and now she has osteoporosis and has multiple vertabrae fractures.  Her back pain is worse than the CMML.

                          She went for a massage and ended up with more fractures.

                           

                          She is not on any other treatment.  She was diagnosed Jan 2011.  The specialist said she could have 6 months to 1 year with this type of CMML - maybe that was due to her platelets being 1 to 15.  They removed the spleen so maybe her odds are better now.  She passed the 6 month mark and we pray she will pass the 1 year mark soon.

                           

                          I'm glad she is not on any treatments as she has good quality of life right now. She is at home and living life as best she can.  They could not offer a BMT.

                           

                          Her spleen was sucking up all the platelets so they removed the spleen and platelets are fine now.  Is your spleen enlarged.  If so and if it gets too big, it should be removed or it will bleed out.

                           

                          I agree the transplant is better than a band aid.

                           

                          You don't know that you will be gone within a year so don't have that as the other option.

                           

                          My mom was given 6 mths to 1 year and she is doing fine.

                           

                          Can you do yoga.  I hear great things about people doing yoga while dealing with these stresses.

                           

                          Keep fighting.  Stay positive.  Stress can make it worse.  Make prayers and staying positive be your medicine of the day, every day.

                        • Re: Looking for others with CMML
                          jsitko Registered Users
                          Currently Being Moderated

                          I kept all of your messages.  They always gave me hope.  I'm sorry to hear things didn't go the way you had hoped.  I will tell you I am pleased with the results Vidaza produced for me.  I was very sick when I went on Vidaza.  I did 8 rounds(months) of shots.  By month 7 I would feel sick the day of the shots.  Other than that, no ill effects.  My counts have been stable for 19 months.  I wish you well and will keep you and your wife in my prayers.

                        • Re: Looking for others with CMML
                          Deanotsuki Registered Users
                          Currently Being Moderated

                          Happy New Year G-papaul!

                           

                          I've been following your progress and it gives me hope and I'm sure it gives all the people on this thread hope as well.  Say positive affirmations, meditate and do the things that make you happy and laugh. 

                          The Vidaza is working and your platelets are coming back up to normal levels.

                           

                          Warren

                        • Re: Looking for others with CMML
                          jhmrun26 Registered Users
                          Currently Being Moderated

                          Dear Paul,

                           

                          How are you doing?  Please keep us posted.

                          Your story has been inspirational to those with CMML and loved ones.

                          God bless,

                           

                          G

                           

                          Message was edited by: run

                      • Re: Looking for others with CMML
                        adeb06 Registered Users
                        Currently Being Moderated

                        Hello G-Papaul,

                        Love your spirit.  I have a very dear brother in law (49) who was diagnosed with cmml (they are still testing  chromosomes).  They are not 100% sure but are leaning towards cmml.  He was just admitted to the hospital. They tell him chemo is not effective for cmml, but are giving him a low dose while waiting on the rest of the test results. The doctors tell him if it is cmml, he will go home and wait 2 months and then come back for a bmt.  My question is did you do any chemo at all?  How long did you wait after being diagnosed until bmt?  Also, how are you doing?  He has a brother so hopefully he will be a match.  I hear 1 in 4.  Its been a shocker of a week but it truly all in the Lord's hands.  I appreciate any help.  Thanks.

                         

                        God bless,

                        Debbie

                • Re: Looking for others with CMML
                  Pepper Registered Users
                  Currently Being Moderated

                  None of my Oncologists have given me the option of having a stem cell transplant. All I'm told that this is a rare incurable leukemia. I was told this from MD Anderson Cancer Ctr in Houston and Texas Oncology. I just don't understand why.

                  • Re: Looking for others with CMML
                    g-papaul Registered Users
                    Currently Being Moderated

                    Hi Pepper,

                    All I can suggest is getting a 2nd opinion...My Godsend at Johns-Hopkins in Baltimore was Dr. Brodsky in the Weinberg Building. He and his team do wonderful things there. Your personal health has a lot to do with it. I'm 60 years old and before they agreed to do a BMT they ran me through a battery of tests to make sure my body could handle the strain. Age has a lot to do with it. 60 is  near the top end of the scale. Hopefully in June 2012 they tell me I'm 1 year cancer free. I'm not out of the woods...yet!

                    • Re: Looking for others with CMML
                      klassykat54 Registered Users
                      Currently Being Moderated

                      Paul,

                      I haven't seen you on here in a while. How are you doing? I have a little problem navigating these boards. Can never find the one I want when I want it. anyhow a couple of weeks ago I was surfing the web and found a BC site for leukemia and it said the people who have had SCT and relapsed sometimes do well with a donor luekosite transplant. I thought of you when I read it. Hope you are doing well. God bless

                      Marcia

                    • Re: Looking for others with CMML
                      jsitko Registered Users
                      Currently Being Moderated

                      Haven't seen you on here in a while.  I hope and pray that you are well.

  • Re: Looking for others with CMML
    PrettyKate Registered Users
    Currently Being Moderated
    Hello!  I am a 53 year old female and have just been diagnosed with CMML I also was diagnosed with allergies, fibromyalgia, osteoarthritis, acid reflux and high blood pressure several years ago. I haven't felt well for years dealing with the allergies, fibro and arthritis, but about a year ago I started getting severe sinus infections that wouldn't go away.  I was on antibiotics constantly,  Around Christmas I also developed pleurisy along with the upper respiratory infection.  I had my right ankle start swelling a few weeks ago and my doctor diagnosed it as cellulitis and gave me antibiotics.  Then when the right ankle started being more normal the left ankle started swelling up.  During that time they took another blood test and that's when they found unusual cells and low platelets along with the higher white cell count.  I had the bone marrow test and just the got the diagnosis a couple of days ago.  I'm not surprised by it because I knew there was really something wrong with all the infections and the swollen ankles. But it's never easy to hear you have cancer - and on top of that a rare form of cancer
    .
    I'm glad I came to this forum and found all of you.  What I have done for the swelling is I keep the foot up as much as possible and use a cold pack.  It seems to really help with the swelling.  I even do it some at work and put my foot up on a box under my desk and put an ice bag on it.  It seems to help relieve the pain also.  My ankles are pretty normal now except they still are discolored,
    The bone pain is another thing.  Since I also have muscle spasms from the fibro and all over muscle pain - the bone pain is another thing to add to the list.  It can be very painful and I know that this is going to probably get worse.  I need to have another blood test tomorrow and they are sending it to Mayo to get results so they know what type of meds they are going to use.  I am the same way with the housework and it is all I can do to get simple things done,  All my energy is spent at work - and I agree that the stress has probably had a lot to do with what is happening to my body.
    Does anyone else have a terrible itching on your skin?  I have been using an antibacterial soap every day and trying to keep coconut oil and creams on my skin and it seems to help.  Not sure if this is related to the leukemia or my allergies
    .
    I am joining you in dealing with this and praying for all of you,  I'm so glad I found you.
    • Re: Looking for others with CMML
      Pepper Registered Users
      Currently Being Moderated

      Hi. I did the same thing with the painful leg swelling. Elevating and cold packs. If I stay on my diet, I don't have it except for very mild knots and swelling. I have the rashes which is common with taking Hydroxyurea medication.

    • Re: Looking for others with CMML
      dinace1 Registered Users
      Currently Being Moderated
      Does anyone else have a terrible itching on your skin?  I have been using an antibacterial soap every day and trying to keep coconut oil and creams on my skin and it seems to help.  Not sure if this is related to the leukemia or my allergies

      Hi

       

      My mother was diagnosed with CMML December 2010, She had severe itching of her head and certain areas of her body for a good year before diagnosis.  At first they said there was no connection, but I believe that CMML is so rare the specialist really don't know what they are dealing with, It turned out mum had leukemic cells in the skin, which since she has been on Vidaza or Azacitadine as its called here in the UK these cells are diminishing.

      Mum found double base cream really good for the itching, it's a thick foamy moisturizing cream that feels incredible when you put it on, Mum still has an itchy scalp but that is getting a little better with each session of the Chemo drug Vidaza.

      Stress causes mum to itch, but de-stressing is not easy I know.

       

      Hope your feeling better soon

       

      Denine

      • Re: Looking for others with CMML
        PrettyKate Registered Users
        Currently Being Moderated

        Thanks for the suggestion of doublebase cream.  I have ordered some because I know this winter it will get a lot worse.  Tuesday I will find out what medication I will be starting.  Hope things continue to go well for your mother.

        • Re: Looking for others with CMML
          dinace1 Registered Users
          Currently Being Moderated

          Mum also uses E45 cream on her head when it gets real bad.. Double Base for the other parts of her body and E45 for her head.

          I hope you find something that helps, It drove mum mad for so long...

           

          Good luck with your treatment. Hope it all goes well for you. Keep smiling

           

          Denine

    • Re: Looking for others with CMML
      jsitko Registered Users
      Currently Being Moderated

      How are you doing?

  • Looking for others with CMML
    jsitko Registered Users
    Currently Being Moderated

    I'm having a hard time navigating this forum.  I'm trying to talk to someone concerning CMML.

    • Re: Looking for others with CMML
      Tami Registered Users
      Currently Being Moderated

      I'm looking for information and support too.  I found out about my mom's diagnosis yesterday.  She's upbeat, but I'm a mess of questions and concern.  I'm not sure what to expect as she battles this disease and starts chemo (hydroxyurea). 

      • Re: Looking for others with CMML
        sonia Registered Users
        Currently Being Moderated

        What I've learned as I experience my mom going though CMML is that you can never know what to expect and you will experience what comes day by day.  No one can say how someone will react to treatment or the disease itself.

         

        My mom was giving 6 mths to 1 year and that was a year ago. 

        She had an enlarge spleen with low platelets for a while.  Stress made it worse when she left her husband.  It brought the disease on quick rapidly.  The spleen got so big and she had alarmingly low platelets.  They tried her on Hydoxyurea but it didn't help at all so they took her off it. Her platelets were so low that they couldn't put her on any chemo.  She was on prednisone for a long time.

         

        They took the spleen out which helped put her platelets back to normal so they took her off the prednisone.  But they failed to put her on osterporosis medication when on prednisone.  Now she suffers with fractures of the vertebrae.

         

        My mom is coping with the disease now with no treatment.

         

        So does your mom have any of this.  It started with enlarged spleen and low platelets.  She shoud try to avoid major stress or do yoga or something to keep her stressfree. 

         

        Sorry to say that the concern will not go away even with all the answers.  I worry everyday that it will be the last time I talk to my mom.

         

        My mom is turning 65.  How old is yours.

         

        Let me know if I can shed any light on your concerns.

         

        Take Care.

        • Re: Looking for others with CMML
          Tami Registered Users
          Currently Being Moderated

          Thanks for your response, Sonia.

           

          It sounds like it's been quite a battle for your mom, and you.  I've seen others mention stress as an extenuating factor and am sorry to hear that's been an added burden for your mom.  I can't imagine how painful fractured vertebrae must be.  

           

          Right now, my mom seems pretty normal.  She's happily married and enjoying retirement at age 69; she's taking things one day at a time and expecting the best.  Her diagnosis came after a routine blood test which indicated higher levels of red blood cells.  Her spleen and liver appear normal in size and "her counts are at 800"  (whatever that means).  I don't know what the prognosis is; she talks like it's a chronic illness that she may deal with for years to come while I read things like "median life expectancy 2-20 months." 

           

          I suppose I need to follow her lead and see how things go, but I'm so afraid that things will change rapidly.  My anxiety is compounded by the fact that she doesn't want anyone outside the immediate (adult) family to know about it.  I want to respect her wishes, but it's hard to talk to my husband or my sister without my kids within earshot.  I think it will be really helpful to share thoughts and info here.  I really appreciate your response and any information you have to offer.

        • Re: Looking for others with CMML
          jsitko Registered Users
          Currently Being Moderated

          Sonia,

             I wondered how your Mom had coped with CMML with no treatment.  It will be 2 years in April that I stopped my Vidaza treatments.  My prognosis was grim when I began Vidaza treatments.  I did 8 rounds and it knocked my counts down to normal.  They are beginning to slip again.  My platelets are only 77.  My doc will begin Vidaza again but not until my whites get bad.  My blasts were very high when i was first put on Vidaza and I felt very sick.  I feel that Vidaza saved my life.

          Joni

          • Re: Looking for others with CMML
            sonia Registered Users
            Currently Being Moderated

            I am waiting for her to get her 3 week blood work next week.  She has been away for 3 weeks so I haven't had an update but I know she is as good as can be. The blood work will soon tell.  Her platelets are 223.  Her WBC 25.  I am not sure what that means for the WBC.  How high is too high?

             

            Her platelets were low because her spleen was so enlarged.  They removed the spleen and now the platelets are good.  I don't know what that will mean for the rest of the body.

             

            I do know that she does have some kidney damage and I hope that it doesn't get too bad.

             

            She will be turning 65 in March which will be a happy day to make that milestone.

             

            I will keep Vidaza in mind for when the numbers start getting really bad. For now, she is living with CMML just as you had for 2 years.

             

            I also need to follow the blasts to see where we are at and when it starts getting really high to see if Vidaza will be necessary.

             

            How bad do the whites have to be to start treatment again.

             

            What side effects did you have while on Vidaza.

             

            Sonia

            • Re: Looking for others with CMML
              jsitko Registered Users
              Currently Being Moderated

              I had no side effects with vidaza for 6 months.  On the days I had the shots in month 7 and 8 I threw up.  Other than that I had no problems.  I was quite surprised.

               

              My platelets are only 77 right now. My whites are 4.  My oncologist tells me the disease is becoming "more active, but he isn't considering any treatment yet.  I don't know when he will put me on it again.  He said he won't go for 8 months next time because it knocked my counts too low.  I've been stable for 23 months now without any treatment.  I'm so grateful.  As you know I'm 61 and I feel quite good. My biggest complaint is night sweats.

               

              Keep me posted.

              Joni

              • Re: Looking for others with CMML
                sonia Registered Users
                Currently Being Moderated

                I haven't been on here for a while.  My mom is still fighting to enjoy her life and coping with CMML.  She has fractures in her vertabrae due to prednisone that caused osteoporosis.  She may be getting back surgery to help the pain of the fractures.  Other than that, she has not been in the hospital at all since her spleen was removed.  Platelet numbers are normal except they are large. High white cells too but not too high that she needs medication yet.  She is not on any treatment. She is tired all the time and has a low appetite which worries me.  So far she is managing with it.

                • Re: Looking for others with CMML
                  jsitko Registered Users
                  Currently Being Moderated

                  I'm back on Vidaza again.  I had 8 rounds in 2009.  For 2 1/2 years my counts were stable.  Then in May my brother committed suicide.  I couldn't eat or sleep and cried all the time.  Unbelievably, my counts turned for the worse within a few months.  I had a bone marrow biopsy and it revealed I'm 70 % cellular.  My platelets are 44.  Tomorrow I see the doc again and begin round 2 of vidaza.  My sister is being tested to see if she's a match.  That's all I know for now.

                  Joni

      • Re: Looking for others with CMML
        vickinish Registered Users
        Currently Being Moderated

        It is very true that you can't predict what will happen with CMML. I was diagnosed six years ago at age 60. My platelets were low at that time. After about three years the platelets had risen too high, 900,000, so I began treatment with hydroxyurea. The drug quickly brought my platelets into the normal range. Two and one half years later I am still taking the drug, lab results are normal. Throughout all this time I have felt fine. I have no symptoms from the disease and no side effects from the drug. I had bone marrow biopsy at the time of initial diagnosis and again before starting the hydroxyurea. Both showed similar results, no chromosome changes.

         

        I think one just has to try to live life as best as you can and deal with each change that occurs piece by piece. It is indeed a strange disease.

        • Re: Looking for others with CMML
          Tami Registered Users
          Currently Being Moderated

          Thanks for your response, V.  It sounds like there's a lot of variability with this disease and its outcomes.  I think I need to learn more about normal blood counts.  I keep hearing/reading numbers, but have no reference point from which to make sense of them.  It doesn't seem like there's all that much information out there either, so I really appreciate your input.  Thanks.

          • Re: Looking for others with CMML
            sonia Registered Users
            Currently Being Moderated

            Our reports here in Canada show us what the norm should be and what the blood work shows.  I can see that WBC should be between 4-11 where my mom is at 25.  This is measured per 10*9/L  RBC should be 3.5 - 5 - RBC is measured 10*12/L- my mom is normal here.  Platelet count should be 150-400 - measured 10*9/L - we are normal there too now that the spleen is gone. With CMML the specialist advises that as long as the platelets are normal, we are fine.  I understand that with CMML, when the immature cells take over, they do not allow good cells like platelets to survive so as long as platelets and red blood cells are ok, we are not in an acute stage yet.

             

            Neutrophils should be between 2-8, lymphocytes should be 1-4, we are high in these and monocytes  and reports of blasts. I also do not know when to be alarmed as the numbers go up. They don't tell you when to be very concerned and when its manageable.

             

            She has some kidney damage too.  They could check the kidneys at some point to see what the serun eGFR number is.  The number should be greater than 59 and we are a bit lower. Her creatinine is a bit higher than normal.

             

            If you can go with your mom to her appointment - you can ask the questions like what is the normal range and we are we at. It might help you.

  • Re: Looking for others with CMML
    josie Registered Users
    Currently Being Moderated

    Good Afternoon Pepper,

     

    My father is 64 years old and was diagnosed on July 15,2011 with cmml,this is new to me.He was hospitalized for 2 months and was given chemotherapy for 9 days and hydreaux.We did not know what he had as he was getting alot of infections.Doctors did not know either which was worse,his plaletes were real low.After the chemo he did good he was released from the hospital in late October.Its been almost 4 months but he is real sick again.Today he has a doctors appointment but it does not look good, his other option is stem cell transplant,but M D Anderson has to approve him.I will let everyone now how the outcome for today is,he looks very pale and has no energy what so ever, all he does is it a little bit and sleeps all the time.He complains mostly of the fatigue and his eye sight as he is diabetic and is losing sight on one eye.I am praying for everyone with this sickness  as it has me panicked as there is nothing I can do to make my dad feel better!!

  • Re: Looking for others with CMML
    Stacey Registered Users
    Currently Being Moderated

    Hello ... My Mother who is 65 and in pretty good health was just diagnosed with CMML 2.. We are in The NJ area. this is so new to us and I am researching  as much as i can on the subject, She is to begin treatment next week and they say is a canidate  for stem cell if we can find a match. I was wondering if anyone was from our area had any insight into this rare disease. any thoughts would be helpful . Thank you

     

    Worried

    • Re: Looking for others with CMML
      jsitko Registered Users
      Currently Being Moderated

      I also have CMML 2.   I was told when I was 58 that I was too old for a Stem cell transplant.  Now I'm told I might be a candidate.  Unfortunately my brother committed suicide in May.  He wanted to be tested to see if we were a match, but I didn't think it was a possibility.  I was wondering where your mom is doctoring.  I go to Geisinger Medical Center in Danville, PA.  Does your mom have a sibling?  My daughter is pregnant and wanted to do something with the cord.  Right now I'm back on vidaza for the second time.  Please keep me posted.

      • Re: Looking for others with CMML
        Patti Registered Users
        Currently Being Moderated

        Jsitko: Hi, my name is Patti, and most of us here have an MPN, ET, PV or MDS & MF. But my best thought for you is to contact your local LLS society, and The American Cancer society. They both have 800 numbers, and can be very helpful with all of your accurite options. From what I know, your Mother is not too old for a BMT, providing a good matched donor can be found. I would suggest finding a reputable Cancer center who has a good rep for doing transplants. Sorry I haven't been much help, but I don't have much knowledge of CMML. We are all here if you need to vent, or just talk.

        Patti 59, ET 07, PV 2011 currently in Wyoming

        • Re: Looking for others with CMML
          wgaccrensh1 Registered Users
          Currently Being Moderated

          Hi, My name is Caitlin.

           

          I'm 22 years old and was just diagnosed with CMML-2 (19% blasts in my bone marrow).  I am going to MDA tomorrow to discuss treatment options.  Anyone else on here have any information about this disease or want to swap stories and support?

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