Guest guest Posted October 25, 2007 Report Share Posted October 25, 2007 Thought I'd clue you in on happenings with husband.(I believe he was diagnosed with CMML about April/May of 2006......didn't have any obvious symptoms.....detected through blood tests.....as yet...not on any medications for disease) He also developed a rash…mostly on legs…because of high white cell count….not fighting infections…..comes and goes….treating with creams. His 'out-patient' ordeal (on Oct.10, 2007) lasted until the 19th. (I guess if anymore....OUT-PATIENT ordeals.....we will pack for a weeks stay....at least. He stayed 4 days last year when he had stent implanted as an out-patient) They removed a tumor from the bladder....about the size of a quarter (cancerous)...didn't/don't know (as yet) if benign or malignate (guess Doc will let us know today). Had him hooked up to I-V in left arm..keep hydrated....and also added platelettes.....and catheter......trying to flush out (blood) from bladder......on Monday (15th) and after going through about 60+ bags of the flushing solution (about 3 liters each....and passing some very painful clots.....giving him some oxygen.....and thingy's on legs to massage...keep circulation going)....went back to surgery......removed a blood clot about the size of a baseball. Gave him 2 units of blood (right arm).......still flushing bladder.....about 18 more bags of solution. Then his poop turned black. Wednesday (17th).....they put him out....again....endoscopy......a tube down his throat.....see if bleeding internally.....nope.....given 2 more units of blood. Did find he had a hyenal hernia (sp).......why he always gets heartburn.....so treating him for that. Anyway...decided to release him on Friday (19th)........if B- M....didn't clear up would probably do a colonoscopy later. Ya-Hoo.........bladder/urine.......poop......a l l clear. We have an appointment this afternoon (Oct.22…3 pm) with urologist..consultation...to find out treatment for the bladder cancer. " I " think it's worse than what Max does....(haven't told him that).....someone (don't know who.....somewhere along the line) told him in comparison to skin cancer..low grade cancer....very few people die from skin cancer. Looking through pamphlet....doctor gave us.....and source on internet.... http://www.medicinenet.com/bladder_cancer/page4.htm 3 grades....Doc says Max is in grade 3...(so not a 'low grade')......levels range from 0 - 4...... " I " think his is a level 3...at least. We'll see........... Got back a little while ago from consultation.....(and supper while we were out). Max is going to be getting radiation trearments for the bladder cancer. It must be in the 4th stages....urologist said it was the invasive kind…….think that is a level 4. Hasn't spread …yet….eo any other areas. Not sure when they will be starting treatments....have to meet with a radiologist (up on North Meridian Street.....9000 block). When they do start treaments....will be 5 days a week for 3 weeks.... (on N. Mer. St.). (Naturally he's hoping it won't interfer with the COLTS November 4th game...........N.E. Patriots......must see!!) He is still NOT on the Plavix or aspirin....because of trouble with bleeding......which has cleared up...as of now......urine clear. Urologist doesn't want to do any surgery (removal of bladder)...because of age (75...Dec. 5th))....the CMML (Lukemia)...and combination of the heart problem (stent)......has never had a scenerio like that before......doesn't want to take any chances. Going to meet with radiologist Friday....set up treatment (dates)...once he starts treatments....will be 5days a week for 3 weeks. We've heard very little side effects with radiation. If this doesn't help/work...I suppose they'll resort to Chemo. All for now......later. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2009 Report Share Posted October 29, 2009 Dear Group, I was diagnosed on Aug 26-09 with CML, I have just returned home from my Oncologist in Corvallis, Oregon after a quite painfull marrow extraction, hope not to have that experiance again. I started gleevec Oct. 1st and stopped taking hydrox, after my weekly lab, I was told to take one Am and one PM hydrox, by the 23rd my WBC was back over 100,000 ater dipping to 12,000 briefly from the initial 130,000, so I have been on 2 hydrox 3 times a day since and again my WBC is starting to fall a little, and I am still taking gleevec. My oncologist said today that they are sending the marrow and the bone they took to Portland to be checked at OHSU, the doctor said he now believes I have CMML, but the sample will provide the right diagnosis hopefully. I still have been getting 2 units off blood every other week or when my hgb falls below 7, and my spleen is very large as the ct scan revealed last week, I am trying to walk a little each day as the leg pain has been horiffic the last month. I am fighting with all I have and try to remain positive and force myself to eat to maintain weight, as I have always ate a healthy diet, my question, does any one know about CMML? , as when I googled it, not much came up. Hope you are all on the way to recovery and are doing well, Oregon (ps. If this prooves to be true the CMML, Do I have to pack my things and leave the group? I am just getting used to being here. ________________________________ From: hey00nanc <ncogan@...> Sent: Mon, October 26, 2009 1:34:52 PM Subject: [ ] Re: Transplant > > Has anyone undergone a bone marrow transplant doing an auto transplant and have shown signs of the CML growing again???? ____________ _________ ______ This is not considered a valid treatment option by ANY cml specialist. CML always comes back....you can't get rid of all the Ph+ cells. It used to be used, when there were not many treatment options, just to buy a little time....that was all. You don't give yourself a new immune system that can kill off the leukemia cells. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2009 Report Share Posted October 29, 2009 Hi , I'm glad your doctor is sending your samples to OHSU. They should be able to interpret the results and give you a correct diagnosis. CMML is actually a totally different disease than CML and will be treated differently. As rare as CML is, CMML is even more rare. Given the fact that you're already in Oregon, I would highly encourage you to go to OHSU yourself to be treated. If it turns out that you have CMML, you want to have to a doctor who is experienced in it and if it turns out that you have CML after all, you want to have a doctor who can deal with whatever peculiarities you have. Let us know what happens. Tracey > > Dear Group, I was diagnosed on Aug 26-09 with CML, I have just returned home from my Oncologist in Corvallis, Oregon after a quite painfull marrow extraction, hope not to have that experiance again. I started gleevec Oct. 1st and stopped taking hydrox, after my weekly lab, I was told to take one Am and one PM hydrox, by the 23rd my WBC was back over 100,000 ater dipping to 12,000 briefly from the initial 130,000, so I have been on 2 hydrox 3 times a day since and again my WBC is starting to fall a little, and I am still taking gleevec. My oncologist said today that they are sending the marrow and the bone they took to Portland to be checked at OHSU, the doctor said he now believes I have CMML, but the sample will provide the right diagnosis hopefully. I still have been getting 2 units off blood every other week or when my hgb falls below 7, and my spleen is very large as the ct scan revealed last week, I am trying to walk a little each day as the leg > pain has been horiffic the last month. I am fighting with all I have and try to remain positive and force myself to eat to maintain weight, as I have always ate a healthy diet, my question, does any one know about CMML? , as when I googled it, not much came up. Hope you are all on the way to recovery and are doing well, Oregon (ps. If this prooves to be true the CMML, Do I have to pack my things and leave the group? I am just getting used to being here. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2009 Report Share Posted October 29, 2009 My oncologist said today that they are sending the marrow and the bone they took to Portland to be checked at OHSU, the doctor said he now believes I have CMML, but the sample will provide the right diagnosis hopefully. ___________________ Hi , This is from Eugene. OHSU is an excellent facility and getting a correct diagnosis is the first step. I don't really know anything about CMML, just have heard it mentioned before. If you need to find a place with more experience to treat you, OHSU will be the place to go...they are top notch for all the blood cancers. I think your Oregon Health Plan will cover you there, but this can be co-ordinated with the oncologist that is seeing you now. OHSU might come up with a protocol for treating you and your Corvallis oncologist can carry it out. If you have CMML....I don't think that has anything to do with the Philadelphia chromosome (not sure) and if you are not Ph+ then Gleevec will not work for you. I hope you have gone ahead and applied for Social Security Disability...I think you don't get benefits for the first 6 months? The American Cancer Society may be able to give you some financial support and talk directly to someone from the Leukemia and Lymphoma Society as they have a couple of different programs for support. Hey, I would say anyone fighting a blood cancer can post on this list.....we just won't exactly be 'in your shoes' but maybe we have some suggestions to offer. Let us know what you hear. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2009 Report Share Posted October 30, 2009 Dear , thankyou for for the info. Yes I did apply for benifits as a precautionary measure. I do believe that OHSU will diagnose and guide treatment to my oncologist, he said they will get to the bottom of it. I guess my response to gleevec and the numbers indicate something else may be at work (CMML). My next appt. is Nov 18th and they said they should know something, if not before. I am to keep taking gleevec and 3,000 hydrox daily in the mean time, that combo has been really leaving me without much energy, and tons of bone pain, from feet to skull now. Hope they find out soon as I would not want to waste opportunity to combat effectively. I haven't found much on CMML, but what I have isn't very prommising, but it seems my age may help hopefully, thankyou so much and best wishes to you, Waldport Go Ducks ________________________________ From: hey00nanc <ncogan@...> Sent: Thu, October 29, 2009 12:17:34 PM Subject: [ ] Re: CMML My oncologist said today that they are sending the marrow and the bone they took to Portland to be checked at OHSU, the doctor said he now believes I have CMML, but the sample will provide the right diagnosis hopefully. ____________ _______ Hi , This is from Eugene. OHSU is an excellent facility and getting a correct diagnosis is the first step. I don't really know anything about CMML, just have heard it mentioned before. If you need to find a place with more experience to treat you, OHSU will be the place to go...they are top notch for all the blood cancers. I think your Oregon Health Plan will cover you there, but this can be co-ordinated with the oncologist that is seeing you now. OHSU might come up with a protocol for treating you and your Corvallis oncologist can carry it out. If you have CMML....I don't think that has anything to do with the Philadelphia chromosome (not sure) and if you are not Ph+ then Gleevec will not work for you. I hope you have gone ahead and applied for Social Security Disability.. .I think you don't get benefits for the first 6 months? The American Cancer Society may be able to give you some financial support and talk directly to someone from the Leukemia and Lymphoma Society as they have a couple of different programs for support. Hey, I would say anyone fighting a blood cancer can post on this list.....we just won't exactly be 'in your shoes' but maybe we have some suggestions to offer. Let us know what you hear. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2009 Report Share Posted October 30, 2009 Dear , thankyou for the info, I wish that CML and CMML were even more rare, that fewer of us would have them. I will certainly get back as I find out what OHSU has to say. Best wishes, ________________________________ From: traceyincanada <traceyincanada@...> Sent: Wed, October 28, 2009 6:38:47 PM Subject: [ ] Re: CMML Hi , I'm glad your doctor is sending your samples to OHSU. They should be able to interpret the results and give you a correct diagnosis. CMML is actually a totally different disease than CML and will be treated differently. As rare as CML is, CMML is even more rare. Given the fact that you're already in Oregon, I would highly encourage you to go to OHSU yourself to be treated. If it turns out that you have CMML, you want to have to a doctor who is experienced in it and if it turns out that you have CML after all, you want to have a doctor who can deal with whatever peculiarities you have. Let us know what happens. Tracey > > Dear Group, I was diagnosed on Aug 26-09 with CML, I have just returned home from my Oncologist in Corvallis, Oregon after a quite painfull marrow extraction, hope not to have that experiance again. I started gleevec Oct. 1st and stopped taking hydrox, after my weekly lab, I was told to take one Am and one PM hydrox, by the 23rd my WBC was back over 100,000 ater dipping to 12,000 briefly from the initial 130,000, so I have been on 2 hydrox 3 times a day since and again my WBC is starting to fall a little, and I am still taking gleevec. My oncologist said today that they are sending the marrow and the bone they took to Portland to be checked at OHSU, the doctor said he now believes I have CMML, but the sample will provide the right diagnosis hopefully. I still have been getting 2 units off blood every other week or when my hgb falls below 7, and my spleen is very large as the ct scan revealed last week, I am trying to walk a little each day as the leg > pain has been horiffic the last month. I am fighting with all I have and try to remain positive and force myself to eat to maintain weight, as I have always ate a healthy diet, my question, does any one know about CMML? , as when I googled it, not much came up. Hope you are all on the way to recovery and are doing well, Oregon (ps. If this prooves to be true the CMML, Do I have to pack my things and leave the group? I am just getting used to being here. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2009 Report Share Posted October 30, 2009 I am to keep taking gleevec and 3,000 hydrox daily in the mean time, that combo has been really leaving me without much energy, and tons of bone pain, from feet to skull now. Hope they find out soon as I would not want to waste opportunity to combat effectively. I haven't found much on CMML, but what I have isn't very prommising, but it seems my age may help hopefully, thankyou so much and best wishes to you, Waldport Go Ducks ------------------------- Hi , You are getting a huge double whammy with your drugs....both cause fatigue. I am sure you will get an answer soon from OHSU and expert guidance. For now, just rest and let your body work on healing. AND Sat. night the Ducks play USC here in Eugene at 5pm....on Halloween! It is on one of the local TV stations...it should be wild. If the Ducks can pull it off, they could go to the Rose Bowl this year. I think it is channel 9....hope you can watch it, have some hot chocolate and enjoy. I am pulling for you Walport ..........healing wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2009 Report Share Posted November 2, 2009 , if you don't mind me asking how old are you, my father is fighting cml right now at the age of 84, like you i have not been able to find to much information. with the help of a friend i have built a website called cancercloud.org telling about my fathers story, i would love for others to post on it too, as far as the bone pain he sufferd it too, to where he could hardly walk. they took him off the gleevec for a week and started him back on with 200m 100m twice a day then bumped him up to 400 so far the bone pain has not returned. i also red that if you take maginusim and calicum with a lot of water through out the day it helps. > I am to keep taking gleevec and 3,000 hydrox daily in the mean time, that combo has been really leaving me without much energy, and tons of bone pain, from feet to skull now. Hope they find out soon as I would not want to waste opportunity to combat effectively. I haven't found much on CMML, but what I have isn't very prommising, but it seems my age may help hopefully, thankyou so much and best wishes to you, > Waldport Go Ducks > ------------------------- > > > Hi , > You are getting a huge double whammy with your drugs....both cause fatigue. I am sure you will get an answer soon from OHSU and expert guidance. For now, just rest and let your body work on healing. AND Sat. night the Ducks play USC here in Eugene at 5pm....on Halloween! It is on one of the local TV stations...it should be wild. If the Ducks can pull it off, they could go to the Rose Bowl this year. I think it is channel 9....hope you can watch it, have some hot chocolate and enjoy. I am pulling for you Walport ..........healing wishes, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2009 Report Share Posted November 3, 2009 Dear , I am 51and 1/2, I am starting to count the half years now as time seems to be a tad bit more valuable than it used to be, still can't figure out why, tho. I don't know much about CMML yet, still waiting for exact diagnosis from OHSU. From what I understand, I will be taken off of gleevec if CMML is found to be the culprit, as treatment will be different, and do not know what it will be at present, but I will know soon and forward that to you. Hope your Dad hangs in there and does well. I do know that CMML appears more frequently in people around 70 yrs of age, but don't know why. Good luck, ________________________________ From: <asynodis@...> Sent: Mon, November 2, 2009 7:29:33 AM Subject: [ ] Re: CMML , if you don't mind me asking how old are you, my father is fighting cml right now at the age of 84, like you i have not been able to find to much information. with the help of a friend i have built a website called cancercloud. org telling about my fathers story, i would love for others to post on it too, as far as the bone pain he sufferd it too, to where he could hardly walk. they took him off the gleevec for a week and started him back on with 200m 100m twice a day then bumped him up to 400 so far the bone pain has not returned. i also red that if you take maginusim and calicum with a lot of water through out the day it helps. > I am to keep taking gleevec and 3,000 hydrox daily in the mean time, that combo has been really leaving me without much energy, and tons of bone pain, from feet to skull now. Hope they find out soon as I would not want to waste opportunity to combat effectively. I haven't found much on CMML, but what I have isn't very prommising, but it seems my age may help hopefully, thankyou so much and best wishes to you, > Waldport Go Ducks > ------------ --------- ---- > > > Hi , > You are getting a huge double whammy with your drugs....both cause fatigue. I am sure you will get an answer soon from OHSU and expert guidance. For now, just rest and let your body work on healing. AND Sat. night the Ducks play USC here in Eugene at 5pm....on Halloween! It is on one of the local TV stations...it should be wild. If the Ducks can pull it off, they could go to the Rose Bowl this year. I think it is channel 9....hope you can watch it, have some hot chocolate and enjoy. I am pulling for you Walport ........ ..healing wishes, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2009 Report Share Posted November 3, 2009 ________________________________ From: john laghlin <johnnyelaughlin@...> Lottie Duthu <lotajam@...> Sent: Sun, November 1, 2009 5:25:26 PM Subject: Re: CMML Dear Lottie, thankyou so much for the sights and concerns, in a busy and troubled world, I have crossed paths with Angels on this sight, whom are selfless. There are primarily three of you and I think the world of all of you, even through unfortunate circumstances surround us, Love see's us all through, thankyou for all you do for so many out there. I hope you are doing well and the spirit of goodness surrounds you, I will keep learning from the Angels,thankyou, ________________________________ From: Lottie Duthu <lotajam@...> johnnyelaughlin@... Sent: Sat, October 31, 2009 1:37:35 PM Subject: Re: CMML Dear ,    I'm sorry to hear about your diagnosis and how little information there is out there. I would call the librarian at your hospital and see if they can send you some information via email. You are right, there isn't much on the internet.  I am a patient at M. D. since 2000. In 2004, I was requested to come immediately to begin a new trial. There I met a woman on the shuttle bus who said she had CMML. She is the only person I had ever met with that diagnosos. I asked why she came to MDACC and she said they had cured her husband of lymphoma, so she figured they would do the same for her. I never saw her again, but I feel she has the right attitude to begin with and something to hold on to.    The American Cancer Society and Leukemia/Lymphoma Society are good places to start, but I went to a medical research search engine and found several sites for you to look at. You can proceed from there to get as much knowledge as you can.  U.S.News and World Report has consistently ranked the University of Colorado Cancer Center’s adult patient care center at University of Colorado Hospital among the best cancer programs in the nation. Here's another site:  http://www.virtualmedicalcentre.com/glossary.asp?centre= & termid=981 Chronic myelomonocytic leukemia (CMML) and juvenile myelomonocytic leukemia (JMML) are uncommon blood cancers that have characteristics of two other types of blood cancers called " myelodysplastic syndromes " (MDS) and " myeloproliferative disorders " (MPDs). http://www.leukemia.org/all_mat_toc.adp?item_id=69974 http://www.caring4cancer.com/go/myelodysplasticsyndrome/news?NewsItemId=39077 I hope you can get a head start with the sites. Good luck and good health, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2009 Report Share Posted November 3, 2009 Hi , my father was told he had cml a month ago at the age of 84 i have tried to find information on the web, which of course I'm sure you can see is a hard task. i did start a web site because of this called cancercloud.org. in this web site i am putting his story and would like others to post there. also i will be researching any cancers that anyone else would like information on to help them fight the battle. Please let me know if i can be of any help. From: john laghlin <johnnyelaughlin@...> Subject: [ ] Re: CMML Date: Tuesday, November 3, 2009, 2:52 AM  ____________ _________ _________ __ From: john laghlin <johnnyelaughlin> Lottie Duthu <lotajamcomcast (DOT) net> Sent: Sun, November 1, 2009 5:25:26 PM Subject: Re: CMML Dear Lottie, thankyou so much for the sights and concerns, in a busy and troubled world, I have crossed paths with Angels on this sight, whom are selfless. There are primarily three of you and I think the world of all of you, even through unfortunate circumstances surround us, Love see's us all through, thankyou for all you do for so many out there. I hope you are doing well and the spirit of goodness surrounds you, I will keep learning from the Angels,thankyou, ____________ _________ _________ __ From: Lottie Duthu <lotajamcomcast (DOT) net> johnnyelaughlin Sent: Sat, October 31, 2009 1:37:35 PM Subject: Re: CMML Dear ,    I'm sorry to hear about your diagnosis and how little information there is out there. I would call the librarian at your hospital and see if they can send you some information via email. You are right, there isn't much on the internet.  I am a patient at M. D. since 2000. In 2004, I was requested to come immediately to begin a new trial. There I met a woman on the shuttle bus who said she had CMML. She is the only person I had ever met with that diagnosos. I asked why she came to MDACC and she said they had cured her husband of lymphoma, so she figured they would do the same for her. I never saw her again, but I feel she has the right attitude to begin with and something to hold on to.    The American Cancer Society and Leukemia/Lymphoma Society are good places to start, but I went to a medical research search engine and found several sites for you to look at. You can proceed from there to get as much knowledge as you can.  U.S.News and World Report has consistently ranked the University of Colorado Cancer Center’s adult patient care center at University of Colorado Hospital among the best cancer programs in the nation. Here's another site:  http://www.virtualm edicalcentre. com/glossary. asp?centre= & termid=981 Chronic myelomonocytic leukemia (CMML) and juvenile myelomonocytic leukemia (JMML) are uncommon blood cancers that have characteristics of two other types of blood cancers called " myelodysplastic syndromes " (MDS) and " myeloproliferative disorders " (MPDs). http://www.leukemia .org/all_ mat_toc.adp? item_id=69974 http://www.caring4c ancer.com/ go/myelodysplast icsyndrome/ news?NewsItemId= 39077 I hope you can get a head start with the sites. Good luck and good health, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2009 Report Share Posted November 3, 2009 Hi ! I have created a site as well (actually just a blog) but I will check your out for sure. Here is mine www.shootforthecure.blogspot.com I am working on partnering with The Leukemia and Lymphoma Society to help raise funds for the research. Good luck to your father! Keep up the fight! Romero From: [mailto: ] On Behalf Of Empero Sent: Tuesday, November 03, 2009 7:23 AM Cc: johnnyelaughlin@...; shaun@... Subject: Re: [ ] Re: CMML Hi , my father was told he had cml a month ago at the age of 84 i have tried to find information on the web, which of course I'm sure you can see is a hard task. i did start a web site because of this called cancercloud.org. in this web site i am putting his story and would like others to post there. also i will be researching any cancers that anyone else would like information on to help them fight the battle. Please let me know if i can be of any help. From: john laghlin <johnnyelaughlin@... <mailto:johnnyelaughlin%40> > Subject: [ ] Re: CMML <mailto:%40> Date: Tuesday, November 3, 2009, 2:52 AM ____________ _________ _________ __ From: john laghlin <johnnyelaughlin> Lottie Duthu <lotajamcomcast (DOT) net> Sent: Sun, November 1, 2009 5:25:26 PM Subject: Re: CMML Dear Lottie, thankyou so much for the sights and concerns, in a busy and troubled world, I have crossed paths with Angels on this sight, whom are selfless. There are primarily three of you and I think the world of all of you, even through unfortunate circumstances surround us, Love see's us all through, thankyou for all you do for so many out there. I hope you are doing well and the spirit of goodness surrounds you, I will keep learning from the Angels,thankyou, ____________ _________ _________ __ From: Lottie Duthu <lotajamcomcast (DOT) net> johnnyelaughlin Sent: Sat, October 31, 2009 1:37:35 PM Subject: Re: CMML Dear , I'm sorry to hear about your diagnosis and how little information there is out there. I would call the librarian at your hospital and see if they can send you some information via email. You are right, there isn't much on the internet. I am a patient at M. D. since 2000. In 2004, I was requested to come immediately to begin a new trial. There I met a woman on the shuttle bus who said she had CMML. She is the only person I had ever met with that diagnosos. I asked why she came to MDACC and she said they had cured her husband of lymphoma, so she figured they would do the same for her. I never saw her again, but I feel she has the right attitude to begin with and something to hold on to. The American Cancer Society and Leukemia/Lymphoma Society are good places to start, but I went to a medical research search engine and found several sites for you to look at. You can proceed from there to get as much knowledge as you can. U.S.News and World Report has consistently ranked the University of Colorado Cancer Center’s adult patient care center at University of Colorado Hospital among the best cancer programs in the nation. Here's another site: http://www.virtualm edicalcentre. com/glossary. asp?centre= & termid=981 Chronic myelomonocytic leukemia (CMML) and juvenile myelomonocytic leukemia (JMML) are uncommon blood cancers that have characteristics of two other types of blood cancers called " myelodysplastic syndromes " (MDS) and " myeloproliferative disorders " (MPDs). http://www.leukemia .org/all_ mat_toc.adp? item_id=69974 http://www.caring4c ancer.com/ go/myelodysplast icsyndrome/ news?NewsItemId= 39077 I hope you can get a head start with the sites. Good luck and good health, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2009 Report Share Posted November 3, 2009 , Thanks for the info, when i get home tonight i will start searching for information on cmml, and post it on cancercloud.org. with all that you have on your plate i would like to help you by getting you as much information as i can, So you know a little about me, once you go to the dedication page you will see i have lost a lot of family members and friends to cancer. i decided i was tired of them passing in vain, and i needed and wanted to do something, anything that could help my dad, my daughters friend jasmine and other. I guess you could say this was my way of giving back even if its just a little. I wanted a site were voice's could be heard a site were it was from the heart. I wish you all the luck with your fight and if there is anything i can do to help, please let me know. All the best, From: john laghlin <johnnyelaughlin@...> Subject: Re: [ ] Re: CMML Date: Tuesday, November 3, 2009, 2:37 AM Dear , I am 51and 1/2, I am starting to count the half years now as time seems to be a tad bit more valuable than it used to be, still can't figure out why, tho. I don't know much about CMML yet, still waiting for exact diagnosis from OHSU. From what I understand, I will be taken off of gleevec if CMML is found to be the culprit, as treatment will be different, and do not know what it will be at present, but I will know soon and forward that to you. Hope your Dad hangs in there and does well. I do know that CMML appears more frequently in people around 70 yrs of age, but don't know why. Good luck, ____________ _________ _________ __ From: <asynodis (DOT) com> groups (DOT) com Sent: Mon, November 2, 2009 7:29:33 AM Subject: [ ] Re: CMML , if you don't mind me asking how old are you, my father is fighting cml right now at the age of 84, like you i have not been able to find to much information. with the help of a friend i have built a website called cancercloud. org telling about my fathers story, i would love for others to post on it too, as far as the bone pain he sufferd it too, to where he could hardly walk. they took him off the gleevec for a week and started him back on with 200m 100m twice a day then bumped him up to 400 so far the bone pain has not returned. i also red that if you take maginusim and calicum with a lot of water through out the day it helps. > I am to keep taking gleevec and 3,000 hydrox daily in the mean time, that combo has been really leaving me without much energy, and tons of bone pain, from feet to skull now. Hope they find out soon as I would not want to waste opportunity to combat effectively. I haven't found much on CMML, but what I have isn't very prommising, but it seems my age may help hopefully, thankyou so much and best wishes to you, > Waldport Go Ducks > ------------ --------- ---- > > > Hi , > You are getting a huge double whammy with your drugs....both cause fatigue. I am sure you will get an answer soon from OHSU and expert guidance. For now, just rest and let your body work on healing. AND Sat. night the Ducks play USC here in Eugene at 5pm....on Halloween! It is on one of the local TV stations...it should be wild. If the Ducks can pull it off, they could go to the Rose Bowl this year. I think it is channel 9....hope you can watch it, have some hot chocolate and enjoy. I am pulling for you Walport ........ ..healing wishes, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2009 Report Share Posted November 3, 2009 Hi , I will look at yours tonight, maybe we can add yours to ours so people can go to both. From: john laghlin <johnnyelaughlin <mailto:johnnyelaug hlin%40. com> > Subject: [ ] Re: CMML groups (DOT) com <mailto:% 40groups. com> Date: Tuesday, November 3, 2009, 2:52 AM ____________ _________ _________ __ From: john laghlin <johnnyelaughlin> Lottie Duthu <lotajamcomcast (DOT) net> Sent: Sun, November 1, 2009 5:25:26 PM Subject: Re: CMML Dear Lottie, thankyou so much for the sights and concerns, in a busy and troubled world, I have crossed paths with Angels on this sight, whom are selfless. There are primarily three of you and I think the world of all of you, even through unfortunate circumstances surround us, Love see's us all through, thankyou for all you do for so many out there. I hope you are doing well and the spirit of goodness surrounds you, I will keep learning from the Angels,thankyou, ____________ _________ _________ __ From: Lottie Duthu <lotajamcomcast (DOT) net> johnnyelaughlin Sent: Sat, October 31, 2009 1:37:35 PM Subject: Re: CMML Dear , I'm sorry to hear about your diagnosis and how little information there is out there. I would call the librarian at your hospital and see if they can send you some information via email. You are right, there isn't much on the internet. I am a patient at M. D. since 2000. In 2004, I was requested to come immediately to begin a new trial. There I met a woman on the shuttle bus who said she had CMML. She is the only person I had ever met with that diagnosos. I asked why she came to MDACC and she said they had cured her husband of lymphoma, so she figured they would do the same for her. I never saw her again, but I feel she has the right attitude to begin with and something to hold on to. The American Cancer Society and Leukemia/Lymphoma Society are good places to start, but I went to a medical research search engine and found several sites for you to look at. You can proceed from there to get as much knowledge as you can. U.S.News and World Report has consistently ranked the University of Colorado Cancer Center’s adult patient care center at University of Colorado Hospital among the best cancer programs in the nation. Here's another site: http://www.virtualm edicalcentre. com/glossary. asp?centre= & termid=981 Chronic myelomonocytic leukemia (CMML) and juvenile myelomonocytic leukemia (JMML) are uncommon blood cancers that have characteristics of two other types of blood cancers called " myelodysplastic syndromes " (MDS) and " myeloproliferative disorders " (MPDs). http://www.leukemia .org/all_ mat_toc.adp? item_id=69974 http://www.caring4c ancer.com/ go/myelodysplast icsyndrome/ news?NewsItemId= 39077 I hope you can get a head start with the sites. Good luck and good health, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2009 Report Share Posted November 3, 2009 Absolutely! I am adding you to mine right now! From: [mailto: ] On Behalf Of Empero Sent: Tuesday, November 03, 2009 7:36 AM Cc: Romero, ; shaun@... Subject: RE: [ ] Re: CMML Hi , I will look at yours tonight, maybe we can add yours to ours so people can go to both. From: john laghlin <johnnyelaughlin <mailto:johnnyelaug hlin%40. com> > Subject: [ ] Re: CMML groups (DOT) com <mailto:% 40groups. com> Date: Tuesday, November 3, 2009, 2:52 AM ____________ _________ _________ __ From: john laghlin <johnnyelaughlin> Lottie Duthu <lotajamcomcast (DOT) net> Sent: Sun, November 1, 2009 5:25:26 PM Subject: Re: CMML Dear Lottie, thankyou so much for the sights and concerns, in a busy and troubled world, I have crossed paths with Angels on this sight, whom are selfless. There are primarily three of you and I think the world of all of you, even through unfortunate circumstances surround us, Love see's us all through, thankyou for all you do for so many out there. I hope you are doing well and the spirit of goodness surrounds you, I will keep learning from the Angels,thankyou, ____________ _________ _________ __ From: Lottie Duthu <lotajamcomcast (DOT) net> johnnyelaughlin Sent: Sat, October 31, 2009 1:37:35 PM Subject: Re: CMML Dear , I'm sorry to hear about your diagnosis and how little information there is out there. I would call the librarian at your hospital and see if they can send you some information via email. You are right, there isn't much on the internet. I am a patient at M. D. since 2000. In 2004, I was requested to come immediately to begin a new trial. There I met a woman on the shuttle bus who said she had CMML. She is the only person I had ever met with that diagnosos. I asked why she came to MDACC and she said they had cured her husband of lymphoma, so she figured they would do the same for her. I never saw her again, but I feel she has the right attitude to begin with and something to hold on to. The American Cancer Society and Leukemia/Lymphoma Society are good places to start, but I went to a medical research search engine and found several sites for you to look at. You can proceed from there to get as much knowledge as you can. U.S.News and World Report has consistently ranked the University of Colorado Cancer Center’s adult patient care center at University of Colorado Hospital among the best cancer programs in the nation. Here's another site: http://www.virtualm edicalcentre. com/glossary. asp?centre= & termid=981 Chronic myelomonocytic leukemia (CMML) and juvenile myelomonocytic leukemia (JMML) are uncommon blood cancers that have characteristics of two other types of blood cancers called " myelodysplastic syndromes " (MDS) and " myeloproliferative disorders " (MPDs). http://www.leukemia .org/all_ mat_toc.adp? item_id=69974 http://www.caring4c ancer.com/ go/myelodysplast icsyndrome/ news?NewsItemId= 39077 I hope you can get a head start with the sites. Good luck and good health, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2009 Report Share Posted November 3, 2009 Great, So I am guess you have CML? can you give me some information on you. Thanks, From: john laghlin <johnnyelaughlin <mailto:johnnyelaug hlin%40. com> > Subject: [ ] Re: CMML groups (DOT) com <mailto:% 40groups. com> Date: Tuesday, November 3, 2009, 2:52 AM ____________ _________ _________ __ From: john laghlin <johnnyelaughlin> Lottie Duthu <lotajamcomcast (DOT) net> Sent: Sun, November 1, 2009 5:25:26 PM Subject: Re: CMML Dear Lottie, thankyou so much for the sights and concerns, in a busy and troubled world, I have crossed paths with Angels on this sight, whom are selfless. There are primarily three of you and I think the world of all of you, even through unfortunate circumstances surround us, Love see's us all through, thankyou for all you do for so many out there. I hope you are doing well and the spirit of goodness surrounds you, I will keep learning from the Angels,thankyou, ____________ _________ _________ __ From: Lottie Duthu <lotajamcomcast (DOT) net> johnnyelaughlin Sent: Sat, October 31, 2009 1:37:35 PM Subject: Re: CMML Dear , I'm sorry to hear about your diagnosis and how little information there is out there. I would call the librarian at your hospital and see if they can send you some information via email. You are right, there isn't much on the internet. I am a patient at M. D. since 2000. In 2004, I was requested to come immediately to begin a new trial. There I met a woman on the shuttle bus who said she had CMML. She is the only person I had ever met with that diagnosos. I asked why she came to MDACC and she said they had cured her husband of lymphoma, so she figured they would do the same for her. I never saw her again, but I feel she has the right attitude to begin with and something to hold on to. The American Cancer Society and Leukemia/Lymphoma Society are good places to start, but I went to a medical research search engine and found several sites for you to look at. You can proceed from there to get as much knowledge as you can. U.S.News and World Report has consistently ranked the University of Colorado Cancer Center’s adult patient care center at University of Colorado Hospital among the best cancer programs in the nation. Here's another site: http://www.virtualm edicalcentre. com/glossary. asp?centre= & termid=981 Chronic myelomonocytic leukemia (CMML) and juvenile myelomonocytic leukemia (JMML) are uncommon blood cancers that have characteristics of two other types of blood cancers called " myelodysplastic syndromes " (MDS) and " myeloproliferative disorders " (MPDs). http://www.leukemia .org/all_ mat_toc.adp? item_id=69974 http://www.caring4c ancer.com/ go/myelodysplast icsyndrome/ news?NewsItemId= 39077 I hope you can get a head start with the sites. Good luck and good health, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.