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  #151  
Old Mon Aug 1, 2016, 06:49 PM
Neil Cuadra Neil Cuadra is offline
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Sue,

I'm sorry that anemia is limiting your life this way, but I'm glad to know that you are doing your best to take care of yourself, and that you are studying your options. Which kinds of treatment to consider or when to stick with "watch and wait" is ultimately a personal decision. Doctors can offer recommendations (for example, they may favor watch and wait in low risk cases and drug treatments in high risk cases), but anyone diagnosed with MDS owes it to themselves to learn about their treatment choices, and the tradeoffs involved, so they make the right decision for themselves.

Feel free to ask questions here. For example, many patients here have received blood and platelet transfusions, so if you are interested in their experiences they can share what they know about the pros and cons.

I know there are at least a few Marrowforums members in Edmonton, including NoreenH, Symon, Lamilu, djross, Chris A, and smarchesin, although only a couple of them have been active in the forums recently. Have you checked with the Aplastic Anemia & Myelodysplasia Association of Canada about finding other people in Edmonton?
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  #152  
Old Wed Aug 17, 2016, 07:17 AM
Meri T. Meri T. is offline
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Pancytopenia as of 2016/8/13

I'm very new here. Every year I have my check-up, last year 2015 was fine, but this year, as of Saturday I found out that all my blood counts are very low.
WBC 2.8, RBC 3.46, Platelets 78.

I read David's story, and I think I won't be in the 10 year + gradually falling range, since it only took me a year to crash from WBC 7 down to 2.8

I had my first BMB on Monday, and the results will be next Monday.

However, I'm living in Tokyo at the moment, does anyone know of a support forum like this here?
Add to that my iron levels are quite high 173 (normal range 80-120) iron combine levels very low 136 (normal range 195-273). Is that something that goes with Pancytopenia? The doctors over here don't really explain much, and I'm so new to this. Would really appreciate some of your experiences.

I just want to say I'm so glad to find this forum and read about all your stories. It gives me hope that I am not alone.
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  #153  
Old Fri Oct 28, 2016, 06:11 AM
Banerism Banerism is offline
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Aplastic Anaemia

My name is Aamir.

Just found this site today and decided to join. I'm a survivor of Aplastic Anaemia, diagnosed in 2004 at age 11. I made a full recovery the following year after a successful bone marrow transplant and a brief struggle with GVHD. Eleven years later and I'm completely fine at the age of 23(except for having been diagnosed with glaucoma in 2014).

Thanks for creating and maintaining this wonderful forum.
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  #154  
Old Fri Oct 28, 2016, 09:39 AM
bailie bailie is offline
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Aamir, welcome to the forum! Congratulations on your successes. I am sure there can be others in the future who will want to hear your details of how you handled this disease. It is always a learning experience for everyone no matter their stage.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #155  
Old Fri Oct 28, 2016, 02:11 PM
Neil Cuadra Neil Cuadra is offline
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Hi Aamir. Thanks for joining.

It's nice to hear a success story like yours and I hope you continue to stay in good health.

Can you tell us a bit more about your treatment experience? For example, who was your bone marrow donor? Which type of GVHD did you have, and how long did it last? Do they think the glaucoma is related to your treatment all those years ago?

During your treatment did you have to miss a lot of time at school, and how did that affect your education and friendships?

This type of information can be helpful to other people who face AA at a similar age, and to their parents.
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  #156  
Old Fri Oct 28, 2016, 02:46 PM
Ralph F Ralph F is offline
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Question New Member

Hello, I'm a new member, and I'm hoping to chat with veterans who served in Mannheim, Germany who feel they were exposed to toxic chemicals which have effected their lives years later. I served, and was stationed at Taylor Barracks from 1967-1970. I now have leukemia, and feel it is a result from my exposure to toxic chemicals.
I'm looking forward to hearing from you.

Thank you,
Ralph F
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  #157  
Old Fri Oct 28, 2016, 03:14 PM
bailie bailie is offline
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Welcome Ralph, you might have better luck catching someone with a similar situation if you scroll down on the "forums" page to "Insurance, Finances, Disability, Veterans Benefits". There are a few veterans our age who have posted there, including myself. I was in Vietnam about the same time you were in Germany.

Your exposure could have contributed to your leukemia. The difficult part of what you are asking is that you would really need to document your exposure. For me it was being able to say Vietnam-agent orange-stem cell transplant and acute myeloid leukemia in the same sentence.

Can you tell us more about your situation?
__________________
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #158  
Old Wed Jan 25, 2017, 07:05 PM
Eve Eve is offline
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New to group

Just wanted to say Hi , I became a member today. I was searching web for some answers and hopefully help when I came across this forum which I found to be very informative and everyone really seemed eager to help each other which I just found to be fantastic , so here I am 😊 Im anemic and stay sooooo exhausted and doesn't take much to be out of breath feeling dizzy & lightheaded . I've been dealing with a lot of nausea and very sore bones & joints I sweat from my head profusely but stay so cold to the touch and very pale with dark circles on eyes. I've been seeing a hematologist for @ 2 months now and been given iron infusions for 6 weeks due to pills not helping . I'm concerned however that treatment wasn't enough due to my feeling worse & more fatigued now 😴I go back for follow up on Monday 1/30/17 for CBC diff , ferritin ,iron & iron binding Tibc etc! My labs on 11/7/16 & 11 /21/16 : WBC (9.2) 15.0 RBC 4.98 HGB (11.4 ) 12.5 MCV (77.1) 78.1 Mch (25.4) 25.1 RDW (15.8) 15.7 mpv (6.9) Mono# 0.9 ANC 11.5 iron sat % 9.7 B12 1027 I take b12 injections prob why b12 hi ... My # s aren't so bad But I feel horrible any suggestions could it be more than anemia ?? mDS? help sick and tired of being sick and tired 😕
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  #159  
Old Thu Jan 26, 2017, 11:18 PM
Neil Cuadra Neil Cuadra is offline
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Hi Eve.

Has anyone in your family had health issues like yours? I'm asking because some forms of anemia are familial.

Also, have you been given a specific diagnosis?
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  #160  
Old Fri Jan 27, 2017, 08:21 AM
Eve Eve is offline
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Neil , Thanks for your response/help to the best of my knowledge no one else in the family has ever had similar issues or even close 😕 as far as dx : Anemia, unspecified I also have hormone growth def ( adrenal/ pituary problem) endocrine issues & nurological & muscular & gastric and emotional and more 😕 Literally seeing a neuro to a podiatrist and every specialist in between they tell me I'm a tough / unique case 😕 I feel like I'm being passed from specialist to specialist given meds for this & that and just continuing to feel worse and like no one understands !!! Hoping for real answers this Monday at Hematologist which of course I'm praying for good results too but an explanation also if that makes any sense 😊 .....!
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  #161  
Old Fri Jan 27, 2017, 10:56 AM
Neil Cuadra Neil Cuadra is offline
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Eve,

It's no fun being a "unique case," because it means that the doctors have less information from other patient histories to rely on.

My wife was a unique case too. The one benefit was that it led her hematologist to review her case regularly with the hospital's entire hematology team, and we benefited from their combined experience.

I think it'll help to encourage the doctors who are treating related health issues to talk to each other. If you agree, I suggest that you make sure that they know that you favor the idea.
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  #162  
Old Fri Jan 27, 2017, 04:52 PM
Eve Eve is offline
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Neil, Yes I definitely Agree and will be talking to my hematologist and other specialists who seem to be on board thank the Lord!! Thanks again I go Mon to the Hematologist And I will be having a pill endoscopy on Wednesday so hopefully by end of next week or following week I'll have some answers ??..😜 Have a good weekend 😀
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  #163  
Old Mon Jan 30, 2017, 04:40 PM
triumphe64 triumphe64 is offline
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Quote:
Originally Posted by Eve View Post
Neil, Yes I definitely Agree and will be talking to my hematologist and other specialists who seem to be on board thank the Lord!! Thanks again I go Mon to the Hematologist And I will be having a pill endoscopy on Wednesday so hopefully by end of next week or following week I'll have some answers ??..😜 Have a good weekend 😀
Have you had a bone marrow biopsy?
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Dallas, Texas - Age 75 - Pure Red Cell Aplasia since March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #164  
Old Mon Jan 30, 2017, 04:52 PM
catherinemus catherinemus is offline
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Smile Aplastic Anemia - looking for a transplant now

Thank you for the warm welcome, it helps to know you aren't alone, in fact others are facing more challenges than myself which makes me feel humble.
I was diagnosed with ITP in 2014 having just finished with radiation for a lumpectomy. (to date I am clear in my mammograms yay). Diagnosed July 2016 with Aplastic Anemia. Underwent IVIG, Rituxan, ATG Horse, Cyclosporine and Eltrombopag. Nothing worked, platelets have been less than 10 since June 2016, Neutrophils 0.4. Right now living on Cyclosporine and weekly transfusions. 3rd Bone Marrow Biopsy completed - awaiting results. Second one indicated empty bone marrow with no megakaryocytes which create platelets.

Dr. Richard Wells of Sunnybrook is sending me to the Transplant Team at Princess Margaret in Toronto - waiting for the call. Would appreciate hearing from anyone who has gone through a BMT using an external donor. I don't have enough stem cells for them to farm.

Thanks for listening.
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  #165  
Old Mon Jan 30, 2017, 06:10 PM
bailie bailie is offline
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Welcome to the forum. I had a stem cell transplant about 30 months ago. My stem cells were donated from a 20 year-old male from Germany. Be sure to ask as many questions as you need.
__________________
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #166  
Old Thu Feb 2, 2017, 07:06 AM
Eve Eve is offline
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Quote:
Originally Posted by triumphe64 View Post
Have you had a bone marrow biopsy?
I've never had a bone marrow biopsy. Levels did come up after 6 iron infusions given (iv) Hemstologists wants me to follow up in 3 mos to re check levels.. I'm very glad iron levels are now in normal range ( saturation of iron still on lower end ) but The syptomps of the anemia have worsened along with the bone & miscle & joint pain , headaches etc ; maybe all of these things r due to my other conditions ..? Really at a loss... maybe capsule endorsed done will help too...?
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  #167  
Old Thu Feb 2, 2017, 07:48 PM
triumphe64 triumphe64 is offline
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Eve,
Have they tested your reticulocyte count?
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Dallas, Texas - Age 75 - Pure Red Cell Aplasia since March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #168  
Old Fri Feb 3, 2017, 08:50 AM
Eve Eve is offline
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Question

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Originally Posted by triumphe64 View Post
Eve,
Have they tested your reticulocyte count?
I don't believe so triumphe64 , ???? You seem to really know your stuff 😊 Any advice is most welcome and much appreciated I won't be seeing my hematologist again until March ...
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  #169  
Old Fri Feb 3, 2017, 04:55 PM
triumphe64 triumphe64 is offline
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Both the Bone marrow biopsy result and retic count would indicate a bone marrow failure disease.
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Dallas, Texas - Age 75 - Pure Red Cell Aplasia since March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #170  
Old Fri Feb 3, 2017, 06:10 PM
Eve Eve is offline
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Smile

Quote:
Originally Posted by triumphe64 View Post
Both the Bone marrow biopsy result and retic count would indicate a bone marrow failure disease.
😳 I certainly hope that's not the case .... but definitely something to be discussed with doc !!! The iron infusions did help with bringing my iron levels up & in the normal range saturation level in lower end of normal range but Praise God levels r up!! Just wish I could say that I was feeling better and more energized 🤕🤒😷😴 body aches & bone / joint& muscle pin and aches along with headaches seemed to wanna linger 😢 Just not sure if other contributing gastro& neuro rheumatoid issues are all to blame or with having the anemia along with other questionable CBC counts there's more going on??? Thanks again triumphe64 😊👍
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  #171  
Old Sat Mar 11, 2017, 01:59 AM
Shelly Shelly is offline
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Please guide me-My 9 year old son has been diagnosed with Aplastic Anemia-

Dear friends,
My 9 year old son has been diagnosed with Aplastic Anemia. As per the doctors, a Bone Marrow Transplant is the best option for him.(We are being suggested CMC Vellore as the best place in India for getting a BMT done). ATG response rate may not be good in India, where I am from. Can you please share anything that you consider useful for me and my little boy.
Many thanks.
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  #172  
Old Sat Mar 11, 2017, 01:31 PM
Neil Cuadra Neil Cuadra is offline
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Shelly,

According to articles like this one, factors that favor a bone marrow transplant include severe aplastic anemia, age under 10, and a matched donor, particularly a matched sibling. The statistics show great success for transplants in these children.

ATG is nearly as successful, and may be recommended as first-line treatment for less severe aplastic anemia or when a donor isn't available. What leads you to say that the ATG response rate isn't good?

You might it useful to refer to Table 1 in this landmark article, which covers both adults and children.
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  #173  
Old Wed Jun 14, 2017, 02:07 PM
Rebecca K Rebecca K is offline
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Vidaza helpful.

Quote:
Originally Posted by stevej View Post
Just a note to say hello as a new member. My mother was diagnosed about a year ago with MDS. So our mission and goal like many others here is to find out as much as we can in order to fight this disorder and condition. It is not very easy to read between the lines with what medical information is available. It is almost as if you should have a degree in medicine to even know what you are reading. Current doctor is wanting to have her start on the Vidaza, however not sure that is the right decision. She has been on procrit and that has seemed to help white, red cell count. Any feed back on the Vidaza or similar drug therapy would be appreciated. Thanks....Steve
Steve: My doctor had me go on Vidaza prior to a SCT to lower my percentage of blasts because, according to her, this promotes better outcomes. After 4 rounds, my blasts did indeed reduce to below 5% and I went forward with the transplant. The hardest thing about Vidaza for me was my skin reaction at the site of injections-- very painful. But you can ask for IV injections instead. Best of luck. Rebecca K
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  #174  
Old Wed Jun 14, 2017, 02:12 PM
bailie bailie is offline
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Welcome Rebecca, I also had Vidaza prior to transplant. How is the transplant going for you?
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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