The Leukemia & Lymphoma Society - Fighting Blood Cancers
44 Replies Latest reply: May 30, 2012 2:06 AM by socalmach RSS

New at this wife Dx early stage CMML

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I've posted several times on this forum so won't go into wife's Dx. I lost both my mother in 85 and father in 86 to cancer so am not new to having a love one with these problems. I had a very bad attack of depression last Sat. night thinking about my wife and the chance that I may lose her. She is doing very well right now and plays it all down doesn't what anyone to know. She's gets new bruises almost everyday because she won't slow down. Prednasone might have something to do with that. I love her very much and believe that she is a gift from God. We have a very good marriage though it has not been easy at times. She says we have a forgiving relationship and I believe that to be true. I have 27 years of sobriety and she stayed with me though the drinking years and the first year of sobriety when I was gone all the time working or going to meetings.

 

P. S. I don't spend time being depressed so this was scary for me.

  • Re: New at this wife Dx early stage CMML
    Grog Registered Users
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    Wife's platelets or up for first time sense this all started she had dropped to 34000 and stayed there for two weeks today it is up to 40000. Ya! I hope this means that the Prednasone has stopped the attack on her red blood cells by her autoimmune system. She has one more week of Prednasone than the hope is she can start on a drug that is suppose to help her body repair the bone marrow if it can.

  • Re: New at this wife Dx early stage CMML
    MaryCarol Registered Users
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    I'm glad your wife is responding.The numbers are still mumbo-jumbo to me.

    My husband has been having a hard time with the anxiety about my being sick. Depression has been a part of his life for at least 20 years, so I don't want him to fall into the balck hole. He also has been sober for a number of years, and I am thankful for each sober year.He has spent hours making a wonderful Halloween mask, an owl.

    It's just the fatigue thing with me. Our grandson just was retrieved by his parents (thankGod).I'm too tired to keep up with a 2 year old for long. I suppose I resent not having enough zip to chase him, fix dinner and change the beds.Right now, I might be able to change the channel.

    It does help to read what others have happening in this CMML journey.

     

    MaryCarol

    • Re: New at this wife Dx early stage CMML
      Grog Registered Users
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      The numbers or a way of judging whether things or working right. In my wife's case her first sigh was low Hemoglobin (red blood cell) and was refused by blood bank. When she first went to Dr for this they ran some simple tests found nothing sent her home. Than she started bruising easy and had swollen angles with bruises around angles red spots like rashes on angles again no injury so no reason for this. Red rash was (Bleeding) She also had night sweets which we wrote off as heat flashes that just won't quit. That's when I told her I was scared for her and asked she see Dr again. This time her platelets where down also to 51000 Should be 150000 to 450000. These or what cause clotting in the blood so reason to be concerned. Her MD sent her to a Blood specialist at the cancer center. There they repeated the blood test and ran bone marrow bi Platelets where 47000. Than a week latter it was down to 34000 at around 20000 to 15000 they have to transfer platelets to keep you from bleed for no reason at all. These number tell Dr that they need to look for a cause as this can be life threatening. There can be lots of reasons. In wife case her autoimmune system was attacking her red blood cells. So reason for low red cell and platelet numbers, her monocyclic or one of the white blood cell was very high meaning her autoimmune system was unbalanced. Anyway she was Dx with early stage CMML even though the Dr latter told us that her treatment was to prevent it from becoming full blown CMML or AML. If she had not gone to Dr when I asked it could of been much worse. Most of us receive early warning that something is wrong but we play it down as my wife wanted to do and still does if asked how she is doing. That does not make them bad or wrong it is normal, it will go away and most of the time it does. We all go though life with a pain that scares us and must of the time it is nothing and after it stops hurting it feels better and is forgotten even when it comes back over and over. I have a friend that lived with pain that would of put most people down. He was busted up very badly by a drunk driver who drove into back of his stopped car at 90 MPH. When I was working with him I would hear him say,"boy that will feel better when it quits hurting." I know what that meant and we would both LOL and go on. He had learned a way to handle the pain and didn't let it effect his life. He retired and bought a real large motor home and wife and him or gone all the time.

    • Re: New at this wife Dx early stage CMML
      Grog Registered Users
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      I to have had the attack of depression over my fear of what lays ahead for my wife. This to is normal and I'm looking at the future and I have no control over that so it does me no good or her.  Another let go and let God as I'm powerless over what is to come and I need to be glad with the time we have left to gather no matter how long..I'm glad for the time that my wife and I have spent to gather and hope and pray for more of it. I think him each and every day for her and her love, as she is a gift to me. I'm grateful for God's gift of sobriety as I'm sure your husband is. Ask him if he would like to exchange message on here. I'm sure I would enjoy hearing from him. I'm a retired rail roader spent my last three years running a scale weighing cars and stuff.

      • Re: New at this wife Dx early stage CMML
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        Update new round of Bloodwork today and platelets or at all time low after going up to 40000 for two weeks it dropped to 32000. She was suppose to go in for Chemo end of this week but we found a new articled about side effects on chemo Rituxan (Tituixmab) that scared us into not going there. Wife canceled her round of chemo and now has a meeting with Dr on the 19th to go over which med or chemo to us. Address for article from April this year is.

         

        http://wwwea.medicalnewstoday.com/articles/150657.php

        • Re: New at this wife Dx early stage CMML
          Grog Registered Users
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          Tomorrow wife and I will get to talk to Dr about Treatment opinions and this is scary. Wife showed me that she is having little red bleed spots on hands and arms, this is new it has always been on legs or angles in the past. I tried to not let her see how scared this made me. But I'm glad that she felt she could share this with me. She is so shy  at times it is hard to know what is really going on with her. I heard her talking  to sister on phone and she said that she is feeling very tired at times and today she said she wanted to lay down for awhile and I told her I would enjoy being with her and holding her. But she found things to keep herself busy so that never happened. I feel so alone at times, and so scared for her. She is so busy at times and I believe that the Prednasone has a little to do with that as she talks faster and is more talkative than she is most of the time. I am so scared of her being in a car crash or falling down as even a small injury could be fatal for her.

           

          Puppy will be spayed next week and get her last puppy shots. She is so much bigger than when we got her and like most Boxers so loving, of course she can't stay out of anything.

          • Re: New at this wife Dx early stage CMML
            pinkydo123 Registered Users
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            The predinsone will make her jumpy.Watch for insomnia also.Todd is moody, because of course he ponder's and worry's about the outcome of all this.I find my time with him is precious so we just try to enjoy each other and make the most of it.

            • Re: New at this wife Dx early stage CMML
              Grog Registered Users
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              Hi Pinkydo123    Hang in there it's a long road. We'll pray for you and husband.

               

              Prednasone down to 20 mg today but wife thinks she go back to 30 mg as blood work was better than, I tried to tell her that she needed to stick to what the Dr said.

               

              We meet with Dr today also and she wants to use Rituxan as a treatment and wife doesn't know if she wants to go there. So we asked to get a second opinion, so she is being sent to Omaha Med Center. I asked Dr if delaying the treatment would hurt or not and she said it would not.

              • Re: New at this wife Dx early stage CMML
                pinkydo123 Registered Users
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                At least she is open.Everytime I approach Todd about second opinion's he seem's to clam up and shut down.I'm just trying to go over all our option's.The prednisone also made Todd a bit agitated so if she is doing ok at 20 that's great.Prednisone can habe some nasty side-effects in the long term so I don't think the Doc's like to use very high doses of it unless they have too

                • Re: New at this wife Dx early stage CMML
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                  Thanks pinkydo123.

                   

                  Joy's mother will get to spend Christmas with Jesus instead of us but she will be in our prayers. Joy and her mother where so much alike loving and caring to everyone around them. I use to enjoy listening to them as they played cards as they would both be talking at the same time and finishing each other sentences. There thinking was so in tune to each other it was a real gift. It was so sad to see what altimers did to her. It took everything away her freedom, her sparkle and in the end her health.

                  • Re: New at this wife Dx early stage CMML
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                    Update: Yesterday after funeral service for her mom my wife gave me a scare. Someone said to me your wife is turning red. I went over to check on her and her neck, face and arms where red. I was afraid she was bleeding under the skin. But I have seen these bleed spots before on her angle and this was different not as red. She has been having problems controlling her body temp and almost always says she feels hot even when I'm cold. I realized it was heat related and told her to come set down and cool off. With in 10 min of setting down her color began to return. It happened again today after church but not as bad. Tonight we went shopping and she had a little of this on the back of her neck. She said she was feeling hot and had took off her coat and it didn't get any worse. We are going to Omaha tomorrow for second opinion so I well ask about this if she does not. Has anyone else had this happen? She is always kicking off the covers now and that use to be me. She does have some new bleed spots but they are very small and only three of them that I have seen.

                    • Re: New at this wife Dx early stage CMML
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                      Well we are still up in the air after visit to Omaha. They did another bone marrow bio this is second one sense Sept. Omaha Dr also said it is CMML but needed to nail Dx down a little better so BMB to check on blasts and to see if any change in bone marrow. Dr said that they would probably start wife on Dacogen or Vidaza after we get results of BMB. Lincoln Dr wanted to use Rituaxan to treat immune problem but Omaha Dr said that if wife does have CMML that the immune problem would return as CMML is probably causing it and needs to be treated first. So we now have two different Dr saying two different things and no ideal where to go so are waiting for the results of bone marrow to see where we go from here and hope they can stop tossing around different Dx's.

  • Re: New at this wife Dx early stage CMML
    ncook Registered Users
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    Grog,

    That is beautiful!!  Cheers to this New Year and for your wife to be Cured!  Stay determined, nicole

    PS. My parents have this hanging at home,"We may not have it together, but together we have it all" 

    • Re: New at this wife Dx early stage CMML
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      Hi Nicole and Thanks!  

       

             Joy has been fighting a cold or something sense Monday, Wed nite she woke me up and it felt like she was on fire. I keep an eye on her and she cooled off and didn't wake up till 8:00 AM. She went back to bed and slept till 2:00PM. Last nite at 5:30AM she again felt like she was on fire so I took her temp which woke her up and she was 101.6. So this morning she called Dr and they had her come in right away. I am baby sitting so could not go with her even though I wanted too (Schools or closed so have grandson over). I'm sure it's not dangerous but it still scares me as she has been on predinsone for a long time and this could knock down her immune system making it hard for her to fight this cold. We have not heard anything from Dr about coming in on follow up on second opinion. But did get a large print out but we could not figure it out. So am waiting to see if they have nailed down her Dx yet. The last I heard they where still bouncing it around which doesn't help us at all. Her blast where neg so I think that's good and coons which was positive in first Bone Marrow Bio was neg this time not sure what that means. Her platelets which had been below 40000 sense the end of Sept where 47000 on Dec 10. The last time she did a blood work which was in Omaha. I'm hoping they will do another today to see if any more changes. She bruises so easy and she fell down last week and her left arm above the elbow is all black and blue, she said she fell against our car so reason for bruises being so high on arm. Seems that all we do is wait, scoop snow and freeze. LOL, Joy is handling the lose of her mother very well but she know that her mom wanted to go home to the lord so her mom is where she wanted to be.

      • Re: New at this wife Dx early stage CMML
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        We went to Dr, not in so got a PA again yesterday because Joy is running fevers every night now. Monday morning she was so hot I had to get out of bed to cool off she was over heating me just laying beside her. When I went back to bed I layed on top of covers and she still keep me warm but at 5:30AM I woke up cold she had cooled off so now I was cold. LOL She was running a temp of 102 but she felt hotter than that. She has done this three nights now but first time I had to cool off.  We are not sure if the cold or flu is causing this. PA said it could be the Leukemia and night sweats. I asked the PA if Dr had heard anything from Omaha as they had told us to go back to our Dr in Lincoln for results of second opinion. The PA checked and informed us that they had just received the results it took over three weeks so next Monday we go in to see about this. Hope the flu/cold is over by than. Joy worked an eight hour shift Sunday and was just wasted and hurting when she got home. She had been feeling better but I guess to early to go back.

         

        When Joy hurts I hurt when she cries I cry, I told her I would always be by her side and she would never go unloved. She is God's gift to me and I hold everything in my arms when I hold her.

         

        Love Gene and Joy

        • Re: New at this wife Dx early stage CMML
          MaryCarol Registered Users
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          Joy really amazes me. I haven't worked outside the home for 3 years.That she is able to hold down a job is awesome. We could really use the income, but I just don't feel very marketable.Too tired. I have a time in the morning when I get the basics done (feed the cats, let the dog out, kitchen stuff, etc.) then I take a break and rest. In my past life I worked as a nurse doing senior outreach.

          I've been enjoying a break from night sweats and fever. They come and go. My doc calls them "a constellation of symptoms" .Whatever, a break is nice.

          I got really sick after our flight to Seattle. Too sick to know how sick I was. Anyway, I had pneumonia and was wiped out for a while.

           

          We did go to Seattle for a second opinion. We both were glad that we went. It was a long trip as we live in central Ohio. The doc there,Bart Scott was very helpful. I'm not sick enough to need a transplant now.That was great news. The 'watchful waiting' is hard.My numbers go up and down and I go every 2 months for blood work and a visit. The second opinion was not different from our home doc, and that was very comforting. The hospital there the SCCA was incredible. I felt like the healthiest person there when we left...and half afraid someone would say, well maybe you'd better stay.

           

          I try to be upbeat, not hard for me, and see my grandkids as often as possible...even if they are cootie factories. Everyone but me just had the chicken pox.

           

          My best to you and yours. 2010 surely will bring us answers and peace.

           

          Mary Carol

          • Re: New at this wife Dx early stage CMML
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            Hi MaryCarol    Glad to hear trip went well considering. This stuff can be so overwhelming. My wife has a cousin who is a nurse at the Cancer Center in Seattle don't know name of hospital. Joy spent some time on phone talking to her about Rituxan as cousin is the nurse who gives this treatment and is the treatment drug the Dr want's to use Joy. The treatment is for the autoimmune problem not the CMML. Joy has been having some trouble with something that looks like a blush but is not. She says she can feel when it coming on as she will start to fell hot and her skin tingles or itches and turns red like a very big blush it covers her back, arms, neck and face. The first time was at Mothers funeral Dec 12 09 I thought she was bleeding under the skin so very scary. But it went away after she set down and cooled off. It has happen several times we wrote it off to stress but  early this week we where watching the Jets on TV and it happened again. I also happened at Dr office and Dr didn't seem to censored about it. Joy has work as a nurse for over 30 years now and been in neonatal unit for over half of that time. She loves working with the babes and she prayers for everyone of them as she takes care of them. She has always been a prayer warrior.

             

            Joy is 61 and in early stage of this and looks and acts like she is OK and that's what she will tell you. But even she sometimes says to me that she now knows she is sick and can feel it. She does not have the energy she us to have but forces herself to keep going. She wants to work as long as she can and is only working three eight hour shifts a week but some times they want her to work 12 hrs. This is to much and she is just wasted after working this long. I keep telling her to refuse these longer shifts. We did get some info on second opinion and I had Dr email us the Dx as we could not follow it at office.

             

            The  name is Myeloproliferative disorder/myelodysplastic syndrome. If there is also  an elevation of monocytes seen in the peripheral blood then it is called CMML.   It is a combination syndrome or an overlap syndrome meaning that is has  features of two separate bone marrow disorders when they look at the bone  marrow.  It is treated as a myeloprolferative. If it has a Jak-2 mutation, which Joy  did not, and it is treated as myelodysplatic if it does not.  They are poorly  understood at this time.  I hope that helps.  These diseases tend to be very  difficult for people to grasp and this situation is even more difficult in that  there is an immune component with destruction of the blood cells outside of the  bone marrow.

             

            So the way I understand it is Joy has CMML with an Autoimmune problem also. Dr in Omaha thinks that the CMML is causing the autoimmune problem.

             

            MaryCarol sorry to hear you had pneumonia as this can be a real problem for anyone with cancer. What did you think of Seattle, did you get a chance to go site seeing hope so. We always spend at lest one day at fish market last time we where there some one stole Joy's purse with $60 in it. Latter that day we found $60 laying on ground.

             

            Our prayers go with you and family and others on this forum. Love Gene and Joy

            • Re: New at this wife Dx early stage CMML
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              Well it's been almost a mouth sense I last left a message on here. Wife is doing very well considering. She started treatment for immune problems with Rituxan on Feb 1. After second round she got a very bad cold and was just wasted for one week. She ran temps at night of 102 This is second time she had the cold in three weeks, it felt like I was sleeping to close to the fire place. She skipped her third round the following week because she still felt week from the cold and wasn't sure the Rituxan wasn't coursing it. But this last Monday she went in for her third round I stayed home this time as I now have the cold and didn't want to expose the others there to it. I missed not being there for her even though I feel like I'm not much help. Her platelets or up to 50 for first time sense this all began last Sept. Dr says if this does not fix the immune problem than the bone marrow or CMML is coursing it also.

               

              Love Gene and Joy

              • Re: New at this wife Dx early stage CMML
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                Just thought that I would add something that has nothing to do with wife's cmml. The puppy Daisy in picture is now 9 mouths old and while she is a very beautiful dog she is very timed and so very afraid of strangers. I took her to Pets Smart on Feb 15 to get her some dog food. I had finished checking out and was standing by doors putting on gloves when she stepped in front of the doors and they opened she took off and yanking the leach from my hand and was gone. By the time I got to my car she was out of sight and I had no ideal which way she had gone. Someone told Pets Smart they had seen her go south so most of our search was in that area from the store. Both wife and I took turns looking for her so that one of was always by phone as phone number was on one of her tags. We never found her during the first day and it was 19 deg. out and colder at night. We where afraid that if she stayed out all night she would freeze or get frost bite. Well Tuesday morning some lady who my wife calls an angle called and said they had seen her north of the store by the high school. So I jumped into car and drove up there driving around the school several times. I did finally see her and she was way out in a field near the west side of school but when I walked out calling her she took off headed north a long fence that marked the west side of high school land. I had to drive around the school than walk around north end of the fence that runes clear across the west side of the high school between the open field and the school land and buildings, This is a large area almost a mile long fence. Than up a hill I seen her but now she was on the west side of the field.  So I had to hike back to car drive around the school and field again but this time as I pulled up she was next to the road. I stopped got out of car walked around car talking very quietly to her and tried to open back car door but it was locked so had to walk back around car to push the button to unlock doors. Fearing that she would take off again. But as I reached for the button she ran past me and jumped into the front seat of the car ready to go home like nothing had happened. She is fine and does not to seem to have any frost bite. We where very scared because it was so cold out that night. We had a pray team praying for her.

                 

                Love Gene and Joy

                • Re: New at this wife Dx early stage CMML
                  Grog Registered Users
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                  I found this info on CMML on a link to Troy's web site. http://thistledew.co.nz/cms2/cms_template/home.php

                   

                  It is best description of CMML I have found so far.

                   

                  Chronic myelomonocytic leukemia

                  Chronic myelomonocytic leukemia (CMML) is a type of cancer that  starts in blood-forming cells of the bone marrow and invades the blood.  In CMML, patients have an elevated number of monotypes in the blood,  with a monocyte count of at least 1,000 (per mm3). Often, the monocyte  count is much higher, causing the total white blood cell count to become  very high as well. Usually there are abnormal cells in the bone marrow,  but the amount of blasts (very early/immature cells) is below 20%. Many  patients have enlarged spleens (an organ that lies just below the left  rib cage). About 15% to 30% of patients go on to develop acute myeloid  leukemia.

                  Because CMML patients have abnormal looking (dysplastic) cells in  their bone marrow, for a long time CMML was considered to be a type of  myelodysplastic syndrome. Still, it didn’t fit in well with other  diseases in that category. That is because the major problem in  myelodysplastic syndrome is having too few blood cells.

                  Patients with CMML may have shortages of some blood cells, but a main  problem is too many of a certain type of white blood cell (the  monocyte). In this way CMML is more like a myeloproliferative disease (myelo -- bone marrow, proliferative -- excessive growth). Chronic myeloid leukemia is an example of a  myeloproliferative disease where the problem is an overproduction of  white blood cells. Since CMML has features of both myelodysplastic  syndrome and myeloproliferative disorder, experts created a new category  for it: myelodysplastic/myeloproliferative diseases. CMML is the most  common disease in this group. Much less common are atypical chronic myeloid leukemia and  juvenile myelomonocytic leukemia.  All of these diseases produce a lot of abnormal blood cells.

                  • Re: New at this wife Dx early stage CMML
                    Grog Registered Users
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                    Hi everyone

                     

                    Update on wife she finished her first round of treatment with Rituxan and has done follow up blood work. "There was no change so it didn't work but she is doing OK. Still working part time three days a week because she loves working with the babies and says she will do so as long as she can. The Dr says she is on wait and see now so don't have to go in for blood work as often. She has to go for coons test in two weeks and if that is OK she will go on once a mouth blood work. Prednisone is down to 5mg every other day also reason for blood work in two weeks. Most of her blood numbers or good except pantalets low and monocytes high.

                     

                     

                    Love Gene and Joy

                     

                     

                    Puppy still growing, up to 58lbs now eat her dog dish yesterday so will replace with metal ones. We have some large Tonka trucks that belonged to our kids and she drags these all over the yard. She is 10 mouths old now.

                    • Re: New at this wife Dx early stage CMML
                      Heatherb Registered Users
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                      Hi, I just wanted to touch base with someone who is in the same boat.  I was diagnosed with CMML last August 2009.  They have me on Hydrea 500mg. daily and for the most part my blood counts are holding, platletes bounce and the monocytes are in the high range.  I've had two bone marrow biopsies and am looking at a SCT with a non-related donor.  The issue seems to be timing; I feel good so I'm not ready to jump into the world of unknown but I have to do this before it morfs into something more.  No doctor can give me a time line of when to start the SCT other than to do it sooner than later.

                      I'm working full-time managing radiology departments for 12 clinics and have a daughter in high school who is graduating this year.  I would like to hold out as long as possible.

                      Have they discussed this option with you?  I've met with Mayo Clinic and the University of Minnesota and am deciding on which facility is best for me.

                       

                      Heather B.

                      • Re: New at this wife Dx early stage CMML
                        Grog Registered Users
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                        Hi Heather

                         

                        No Dr has not given wife a time line of when things will happen. Dr did say that at sometime it may become CML or AML, my wife has another problem as well as CMML she has an autoimmune problem that the Dr as started calling Avan's syndrome. Like you her pantalets bounce up and down luckly staying above 32000 the highest for one week was 66000. But most of time between 34000 and 47000. She had a treatment for the Avans with Rituxan but it did not change any of her numbers. The problem Avans causes is that if and when wife needs transfusions for low platelets it may not work as the immune system would attack them and numbers will not stay up. Wife had a coombs test done Monday but have not heard results yet. (this tests for antibodies attached to red blood cells) She is having problems with angles getting very sore the skin turns a little red and even a light touch causes pain. Sense she is on her feet a lot at work it's beginning to be a problem. She is talking more of retiring now but still wants to keep going as long as she can. She may be having problems with spline as well now don't know until after next Dr vist. I know I'm not much help as like you we are in the dark and hoping and praying that we can have as much time together as we can and our prayers go out to you and family.

                        Site for coombs test. http://www.nlm.nih.gov/medlineplus/ency/article/003344.htm

                         

                        We are seeing a Dr at Southeast Nebraska Cancer Center and have not talked at all about bone marrow transplant yet. Here is web site of another form of transplant that worked for someone with CMML.  http://thistledew.co.nz/cms2/cms_template/home.php

                         

                        Love Gene and Joy

    • Re: New at this wife Dx early stage CMML
      Grog Registered Users
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      Thanks Micole

       

      IIt's been a while sense I have updated on wife. We went to Dr today and the Dr was real up and said that Joy was doing great. All her blood numbers have improved except for platelets which are staying above 32000 as high as 56000. They were 51000 today. Numbers or still low but just a little below normal on everything but platelets. Next visit in in three mouths. we been seeing here once a mouth and blood tests every week. She was treated with Rituxan for the autoimmune problems and it seems to have worked because her Coombs tested negative it was always positive before. (This test is to see if any antibodies were attached to red blood cells if they were the spleen removes them so low red blood cell numbers)

       

       

      Puppy will be One year old on 27th.  I think she would of been happy as a pig, because she likes to play in mud. It rained all day today so when she came in tonight she was covered from head to toe. So I had to give her a bath.

       

       

      Love Gene and Joy

      • Re: New at this wife Dx early stage CMML
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        Hi everyone

         

        Joy was not due to see Dr again till Aug. But she has been sleeping alot during afternoon and has less energy to do things. She has also been running a low grade fever at night always below 101.

        Monday we went shopping early in morning and had not been there long when she said she needed to go home as she was feeling very weak. I asked her to call Dr and go in for blood work to see if anything had changed she said she did not want to but Wed morning she did call and they had her come in for blood work. Her Red blood cell count was 8 not good any lower and she would of needed a transfussion so reason for weakness. We are waiting to hear from the Dr.

         

        Love Gene and Joy

        • Re: New at this wife Dx early stage CMML
          Grog Registered Users
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          Hi to everyone our prays go out to you all.

           

          Update on my lovely wife. She is a gift to me and the CMML scares me, but we are taking it one day at a time. Joy started infusion treatment this morning with dacogen and than she went to work this afternoon. She has to do the treatment everyday this week but only works tonight and tomorrow. She is trying to carry on as if nothing is wrong and doesn't like me to tell anyone how she is doing. We spend a hour every morning just holding on to each other and I pray for her during this time. She has finial said that she is going to have to retire before long, I've been asking her to do so sense this all started but she loves her job of taking care of the little babies and doesn't want to give that up till she has to. We have two trips planned one in Sept and one in Nov she is so afraid she won't get to go. Most of her blood counts or low and monocyties or high. Dr says the numbers will get worse before they get better and she will need transfusions and blood fortifiers. I have a Goldwing M/C and we go on rides every now and than. We keep them to less than 200 miles, but she is always scared she will get hurt (low platelates), but we still enjoy the time together. Fri will be our 44th anniversary and I'm still trying to figure out what to get her besides flowers and a card. We play cards almost everyday and she beats me must of the time. LOL

           

          Love Gene and Joy

          • Re: New at this wife Dx early stage CMML
            MaryCarol Registered Users
            Currently Being Moderated

            Good to hear from you. Joy, retiring doesn't mean that you are throwing in the towel. It means that you choose to use your energy in other ways.

             

            I am still not on any medication. My platelets stay low and my legs look as though I have paisley tattoes from the bruises. My energy level isn't bad unless I try to do what I did several years ago. I am paying up now for overdoing, but I had a good time.

             

            Congrats on so many years of marriage. It really helps to have a partner through all of this cmml stuff.

             

            peace and love,

            Mary Carol

            • Re: New at this wife Dx early stage CMML
              Grog Registered Users
              Currently Being Moderated

              Thanks MaryCarol

               

              It's always nice to hear from others on here and know that we are not alone. It hard to not to only think of the bad things that our happen to use, but with God's help we will get though this. We have found and or buying our grave plots. Wife wants to be near her mother so we will both be there. It's way out in the country on a small hill and it is very nice and near a small country church. She finished her second round of chem today and she looks very good but she doesn't let me know how she is really feeling. She takes a lot more naps now so I know she isn't as strong as she acts.

               

              It's always hard when someone we love is going though all this. Our prays go out to all on here.

               

              Love Gene and Joy.

              • Re: New at this wife Dx early stage CMML
                Grog Registered Users
                Currently Being Moderated

                Hi to everyone on this site

                 

                Joy has been in a lot of pain that started two week after her treatment with Dacogen. She has sores in her mouth that make it hard to eat or talk. Her left index finger is swollen and there is some black on end of finger not sure if it is bourse or not she does not remember injuring it. Her right angle is also swollen and makes walking very painful. She worked 4 hrs Sat and again on Sun and that is when the angle started hurting. She was suppose to work 8 hrs last night but called in sick. We found that she can get short term disability for 25 weeks so are looking at doing that. That allows her to stay home and hope she gets better before going back to work. She went in for Blood work Monday the 21st and told the nurse about all the problems and thy let her she a PA after talking to PA her Dr came in and checked on her. Her blood work was very good her platelets were 552 they have never been above 56 sense Aug 09, her red blood cell count had been so low that she was given a transfusion Monday the 16th. They were in normal range the only count that was bad was Monocytes which or still very high. The Dr was very encouraged by the counts and said  that she believes that this is a sigh that the Dacogen was working, she also said she had never seen anyone respond this soon. Joy was given some inflammation drugs to help with the swelling. Dr said this may be do to the sudden change in counts and the bad blood cells were braking up so fast that some had built up in the joints of her finger and angle making them swell up. Joy has been sleeping a lot during the day because of the pain and lack of energy but this makes it hard to sleep at night. She still puts on her OK face and doesn't let people see how much she is hurting. She goes in for another round of Dacogen next week so we will see how this goes. It hurts to see her in so much pain all the time and it's very hard for her to talk and sense I can't hear very well hard to understand. We had our roof damaged in hail storm while we were gone so didn't even know till all the neighbors started getting there roofs done. Also garage door broke, it was over 30 years old so we replaced it and refrigerator quit working and life just keeps getting on with LOVE.

                 

                 

                Love Gene and Joy

                 

                 

                http://www.youtube.com/watch?v=74CNUExD4I8&feature=related

                 

                http://www.youtube.com/watch?v=1Hny-xp4k9c&feature=related

                • Re: New at this wife Dx early stage CMML
                  Grog Registered Users
                  Currently Being Moderated

                  Update

                   

                  Hi to everyone

                   

                  Joy is still very weak and in a lot of pain. She has petechii on her legs, angles swollen and spleen is also enlarged. Monday 23 her left index finger was swollen and black on end of finger don't know why. Than Wednesday she was coming out to give me phone and the air moving though the house closed the door on her hitting the same finger. If she could swear she would of than. The finger has a large blood blister because of low platelets and looks real bad. They put off chemo for a week to allow finger to heal a little and sent her to ER to have it checked. Her blood work is normal for her low red cell and platelets. High monocyties again.

                   

                   

                  Love Gene and Joy

                  • Re: New at this wife Dx early stage CMML
                    MaryCarol Registered Users
                    Currently Being Moderated

                    Ouch ,ouch and ouch!!!! I'l bet your finger is still tender and pretty. I hope you are right handed.

                     

                    I Hope you can enjoy the long weekend. We're trying to not worry about our kids who are all going on vacation together to a beach in Delaware. Richard will be glued to the Weather Channel watching hurricane stories. yikes.

                     

                    The heat just whips me, so I stay in a lot. My big outing for today was to the clothesline to hang up the wash. Sure dries fast in this weather.

                    Thinking of you both.

                     

                    Mary CArol

                    • Re: New at this wife Dx early stage CMML
                      Grog Registered Users
                      Currently Being Moderated

                      Thanks MaryCarol

                       

                      Joy's spleen must of enlarged even more as last night it hurt so much she could not walk upright. Angles which had been getting better began to swell. She was left a message on cancer center phone letting them know she needs to come in for blood work today and to let them know about the spleen and the pain. She is so weak she even asked about a wheel chair, not sure if she was joking or not.

                      I went to club to swim Monday and while I was gone I started to get scared what I may find when I got home. I know that it was unfounded because she is not that bad yet but it was so real. I told Joy what I was feeling after I got home and we had a little fun with it. The fear of losing her is getting stronger as the pain and weakness increases.

                       

                       

                      Love Gene and Joy

                      • Re: New at this wife Dx early stage CMML
                        Grog Registered Users
                        Currently Being Moderated

                        Hi to everyone

                         

                         

                             I'm here to write an update on my wife. She spent 3 of the last 4 days in the hospital for infusion three units of red cell and 2 units of platelets. After blood work Wed they told her she had to go back for two more units of platelets on Thursday, she cried.  She finished her second round of chemo Monday. Her blood counts have bottomed out. She been sleeping most of the time and can't keep food down so is not eating well. She has some days she can walk but most of the time her angles hurt so bad she can hardly stand up. Friday she goes in for blood work and results of ultra sound. She is on short term disability as unable to work now. I'm so scared for her it hurts. We spent some time crying together. I keep praying for her and for the others on this website.

                         

                        Love Gene and Joy

                        • Re: New at this wife Dx early stage CMML
                          MaryCarol Registered Users
                          Currently Being Moderated

                          Dear Gene and Joy,

                          What a hard time you are going through. I am praying for you both. You are both good fighters and this may be your toughest.I also pray that new treatments will be available for those with CMML. You are not alone,

                           

                          best wishes and good thoughts

                          Mary Carol

                          • Re: New at this wife Dx early stage CMML
                            Grog Registered Users
                            Currently Being Moderated

                            Thanks! MaryCarol    How are you doing?

                             

                            The Dr visit fri didn't go any better they sent her over to hospital for 2 units red cell Fri and 2 units platelets Sat, spent five of last 6 days getting infusions little over 6 hours each time. Her Creatinine is up to 2 Fri and 2.7 today. We go back to hospital tomorrow for another test to see if creatinine has improved if not they said she will have to stay. She is doing pretty good considering everything and is walking a little now. Her spirits our down and feels she just can't keep going, it hurts to hear her talk like that but know I wouldn't do any better if it was me. I keep telling her I love her and pray for her a lot. We have some friends who brought over food for us. One asked if Joy could have visits I said yes if they didn't mind a dirty house as I'm the house keeper now and not doing a very good job. LOL

                             

                             

                             

                            Love Gene and Joy

              • Re: New at this wife Dx early stage CMML
                dmloera Registered Users
                Currently Being Moderated

                Hi Gene & Joy,

                 

                CMML patient who has been treated with "Vidaza" for over 7 years now.  CMML does cause our bone marrow to over produce white blood cells (most of which are abnormal) and the defective cells can then attach our body, since they incapable of distrinqusiting our healthy body cell from an invading virus.  Hence, the autoimmune rheumatiod arthritis experienced by many of the CMML patients.

                 

                In 1998 to 2004 I was running nightly fevers (102+) and sweats with cause me to change my nightwear up to five times a night.  I was constantly fatigued could hardly get out of bed. I was forced to stop working.  When I was finally DX with CMML in Feb 2004 my doctor started me on a new chemo drug "Vidaza".  It is injected into a patient up to seven days every month and has given me back an almost "normal" life.  It works at the DNA level and since the "abnormal white cells" have a defect they asorb the Vidaza and are eliminated, while the healthy white cells reject the Vidaza.  Thereby, a CMML patient can increase their numbers of normal WBC and enjoy all of the associated benifits from having a higher WBC.  I now run at 3.7 WBC and before the Vidaza I was at 0.98. Joy should not be running fevers.  If she is running fever the CMML is active or she has an infection.

                 

                If I now run a fever and the body aches radiates from my bones, I know I have an infection and I contact my doctor because it can easily become "Sepsis" (aka Blood Posining).

                 

                I do respect and appricated all medical professionals, but since I maintain good insurance coverage (medicare and Blue Cross Supplement), and have had to endure so much, I no longer allow trainees to draw my blood or see PA when I should be seeing an Oconoligist.  They are intented to help the doctor with the Healthy patients.  I have seen several patient treated with Vidaza at M.D. Anderson Cancer Center in Huston, TX and it has work well for all of us with CMML.  (it has almost elimated their bone marrow transplants for CMML patients).

                 

                I hear and read of patients, like Joy, who are treated with other medications with some success.  By Doctors who are not very expericenced with CMML or its treatment.  Also, I have read other of postings in the CMML blogs and I think they are confused between CML and CMML leukemias.  CML treatments are completely differently than CMML treatment.  They are not the same leukemias.

                 

                CMML can not go into remission, it can only be managed with treatments like Vidaza and has now proven to works for years. Especially on patients in the early stage of CMML.

                 

                 

                Best wishes on Joy's treatments.

                Dan

                • Re: New at this wife Dx early stage CMML
                  Grog Registered Users
                  Currently Being Moderated

                  Hi Dan

                   

                  Joy's Dr talked to use about Vidaza and Dacogen. Dr choice to us Decogen as it is a 5 day regiment instead of 7 with Vidaza. I believe they both work pretty much the same way and or members of the same drug family made by different companies. I'm glad to hear you are in doing very well. Dr told us that if Dacogen is going to work it will do so after the third or forth treatment. Joy finished her third round last Fri. so is in the post treatment low blood counts and is infusion dependent. Dr says that the Dacogen shocks the bone marrow and reason for the low counts. Dr also said that when the bone marrow recovers from the treatment it is hoped that it will began to make the right kind to blood cells. Her white cell counts were zero Sunday and 1 today. Her platelet count was 7 Sunday and is 30 today. Her platelet count bounces from a high of 49 to the low of 7. The good news today from Dr visit was that the spleen which had been very large has began to shrink and is half as big as it was last week. It was putting pressure on the kidney and causing those counts to jump but they are normal today, Dr believe that's because of the spleen shrinking. I keep telling her that she is going to get better but she has been down for the last two weeks and it's hard to get her to feel better about herself and to believe that she will beat this thing. I do not want to lose her as she is my best friend. My life would be empty without her in it.

                   

                  Love Gene and Joy

                   

                  God gives us mountains so we can learn to climb and we or clawing our way up this one.

                   

                  When I hold my wife in my arms I hold the whole world.

                  • Re: New at this wife Dx early stage CMML
                    Grog Registered Users
                    Currently Being Moderated

                    Hi to everyone

                     

                    Update:  Wife's blood counts were very good today. Platelets were 147,000 in normal range first time sense Sept 09. Dr believes that the Dacogen is working as this is after third round of treatment. wife will have to do another round of treatment next week. But Dr says that if the bone marrow is rebounding as she hopes the blood counts won't drop as much. I don't know if I should be jumping up and down or is this just another false sigh, hope and pray it's not. Wife's legs or still swollen and her knees really hurt when she walks but she is walking. She looks so small now, but is eating better so hope she puts some of her  weight back on.

                     

                    Love Gene and Joy

                     

                    http://www.youtube.com/watch?v=CLAg2NDcOt4

                    • Re: New at this wife Dx early stage CMML
                      MaryCarol Registered Users
                      Currently Being Moderated

                      good news from you folks!  Wow, my platelets haven't been that high for years. We've just been discussing Dacogen for future use. Right now I can count on enough energy for one activity a day. Sometimes I need a lot more than that.

                      We're gearing up for trick-or-treat night, usually get at least 100 little beggers, lots of laughs.

                      I think of you both and pray for all of us.

                      Mary Carol

                      • Re: New at this wife Dx early stage CMML
                        Grog Registered Users
                        Currently Being Moderated

                        Hi MaryCarol

                         

                        Joy had been on a wait and see but in July she began to have more problems with platelets and swelling of angles with little bleeding spots and night sweets. So Dr said we needed to move up the use of chemo. Dr offered Vildaza or Dacogen but sense Cancer Center is only open 5 days and Vildaza takes 7 days she wanted to use Dacogen. We hope this is the right one for Joy. It doesn't matter how much I looked for answers on the web there just wasn't much out there on CMML. There was someone else on this site who's CMML was treated with Gilvec and they say that there in remission now. Gilvec is a treatment for CML so don't know if on list for CMML.

                        I have seen Joy go though days like you say where she just dosn't have the get up and go any more, so know a little of what your going though also. It's a hard road to be on, we pray for the best for you and others on this site. May God carry you when you or down. I'm thinking of foot steps in the sand.

                         

                        Love Gene and Joy

                        • Re: New at this wife Dx early stage CMML
                          Grog Registered Users
                          Currently Being Moderated

                          Hi to everyone hope doing OK.

                           

                          Update on wife;  She has done four rounds of Dacogen now and is two weeks out. As is the pattern she has been needing infusion of Packed Red Cells three units last week two today. She is still weak she has lost so much weight that we had to buy new bra's today. Her legs or still swollen and so is her spleen. Dr said she thought the spleen may of came down a little. It did after third round of treatment but swelled up again. So this may also be a pattern after treatment. Dr thanks the Dacogen is beginning to work but just does not hold. She will do fifth round starting the 29th after Thanks Giving. I feel so powerless as I watch her suffer. Today she was moaning every now and than as we shopped. I asked her if she needed a wheelchair but she refused she is a proud woman and riding in a wheelchair is a put down as if she is giving up. Her night sweets have not been near as bad so am hoping that this is a sign that she is getting better. As someone on this site said that they were a sign that the cancer was working on them. I pray for her every night and morning as well as others on this site. Oh, Dr said she has never had any one with CMML who's spleen swells and shrinks like Joy's does, her platelet count follows the swelling. When the spleen swells up the counts drop down to a low of 7000 when it shrinks it goes up to a high of 147000 for a few days. Most of the time it is around 15000 to 40000.

                           

                           

                          Love Gene and Joy

                           

                          I hold the whole world in my arms when I hold her.

                      • Re: New at this wife Dx early stage CMML
                        Starburst Registered Users
                        Currently Being Moderated

                        I was diagnosised with CMML in May 2011.  So far mostly been stabilized and not treatment. however, the hemotalogists recommend I consider STC as they feel i would have a good chance considering I am still in good health and considering I'm 64 years of age.  Just wondering if you have any more info which which help me make a decision between this high risk treament or possibly drugs so I can decide before my consultation meeting.  Other than fatigue, I have no real other sypmtons.  My blood plates are 63 at last count and monocytes 2.5. 

                         

                        Bernice

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