5q- Syndrome

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• October 6, 2008 at 9:23 pm #21462
  Laurie H

  Member

  I was diagnosed last year with 5q- syndrome. I have found very little information regarding this sub-type of MDS. I have asked questions and searched for information with out much luck. I stumbled onto this website and hoped that some of you with the same sub-type MDS might share your experiences. I am currently on procrit and pneupagen 2X weekly. My procrit was increased about three weeks ago because my hematacrit has been up and down like a yo-yo the past 6 months. Prior to that I was stable. Any information would be appreciated.

  October 6, 2008 at 11:43 pm #21463
  MNladyslipper

  Member

  Laurie,
  You are fortunate to have this diagnosis over others. Many people with 5Q have been very successful with treatment. Revlimid is specific for this type of MDS. In many cases it will reverse the chromosome damage. Others will add more I am sure, but please be comforted that there are many success stories for -5Q MDS.
  Good Luck!

  October 8, 2008 at 3:46 pm #21464
  plantcollector

  Member

  Laurie,
  Yes, you are fortunate. If you have MDS, then this is the best one to have. Not that any of them are good! I was diagnosed back in October 2001. I have never had a transfusion to date. I can tolerate the low red counts pretty well. I am now 68 years old. 5q- is my only chromosome anomaly known. My biggest problem has been a high platelet count, not low. At DX it was 1,800. I had no idea anything was wrong until this showed up on a routine CBC. I took anagrelide for 6 years, but stopped taking that over a year ago. That pretty well held the platelets down to a reasonable level – below 1 million. Anyhow, the platelet counts have come back, so I am starting Vidaza next Monday. The hematologist wants me to try that before going on to Revlimid. I am not sure if I made the right decision or not. Time will tell. The doctor tells me the condition is scarring my marrow further. But I sometimes wonder what the outcome would be not pursuing any treatment at all. Let me know more specific details from your BMB if you wish to share that. I would be happy to compare notes with someone who has the very same thing. I have not done that before. I can send you my E-mail address if you’d like to correspond. Want to let you know that you might have a lot of quality time with your diagnosis. I have had and expect more. I have had a normal 7 years. Sylvia

  October 9, 2008 at 2:06 am #21465
  Zoe

  Member

  Laurie,

  Welcome to the group. I was diagnosed 2 years ago next month. I have responded well to Aranesp, though my reds aren’t holding as high as they were, they are slowly trending down. Whites and platelets are fine.

  I know my Dr. has a 5q patient who was diagnosed 30 years ago. She is now in her 70’s, you can go strong for some time with a 5q dx.

  The struggle with energy is my biggest complaint. Sometimes I get discouraged, especially when fatigue causes me to be grouchy to my family.

  Feel free to ask any questions. There are many helpful people here.

  Zoe

  October 11, 2008 at 3:36 am #21466
  Laurie H

  Member

  Thanks for the information–I welcome all that I can get.
  plantcollector I would like to compare notes with you and my email is on my profile.
  This doesn’t have anything to do with MDS but I find it interesting that the first two person to respond to my post have plant related names.—Apparently, I wasn’t thinking clearly when I registered because I usually use seedlady or plants0000. So–are you plant(native plants for me) finatics like me?
  I have to admit not knowing anything much about MDS when I found this website. I was pretty much taken aback when I read the posts.—It was a bad week to say the least. However, I have more information and I feel pretty good about it. I also have an appt.at the end of the month at OHSU in Portland,OR–the only center of excellence in our state. I hope they have given me a long appointment since I have two pages of questions to ask.
  Zoe, I do know what you mean about getting discouraged and grouchy at family.
  I also have severe degenerative joint disease along with the MDS. One makes me not able to get up and the other makes me too tired to want to get up! The treatment for joint disease actually made the MDS go balistic but without that incident Dr.s may not have been inclined to do BMB. The steroids to control my back pain suppressed my bonemarrow to the point I couldn’t do anything except sit like a zombie. I am still waiting for 2 back surgeries but my hematacrit is too low. I’ll look forward to any more information and email.
  Laurie

  October 12, 2008 at 8:45 pm #21467
  billboy

  Participant

  Hi Laurie,

  From what I’ve read, the 5q deletion is not a syndrome, but a characteristic associated an MDS classification, ie RA. RARS, RCMD, RAEB etc. I believe a patient in any of these classifications may or may not have the 5q deletion. Moreover, if you don’t have it presently you may get it as well as other chromosonal abnormalities. Glad that your doctors have found some productive treatments for you. Nothing helped me until I was given four cycles of decitabine. Five months after the fourth cycle I had my 87th transfusion of PRBCs, in August,2007 and since then have been transfusion independent.

  Bill F

  October 12, 2008 at 9:06 pm #21468
  Mary4Mike

  Participant

  Bill,

  I hope I haven’t already asked you this question, but why did your doctor only give you 4 rounds of Dacogen? Was it because your counts were in the normal range after 4? Where do your counts run now? What dose did you take of Dacogen and what kind of a cycle length did you do?

  Thanks,
  Mary

  October 12, 2008 at 9:27 pm #21469
  Zoe

  Member

  Bill,

  There is a seperate category for 5q Syndrome. It is a newer classification. 5q Syndrome has a specific set of qualifications: 5q can be the only the only chromosomal abnormality, platelets run normal to high, wbc is normal to slightly low, no excess blasts. Anemia tends to be moderate to severe. It carries an excellent prognosis compared to other categories of MDS.

  It is possible to have a sole anomoly of 5q-, but not be 5q Syndrome. It is not possible to have any other chromosome abnormalities and be considered 5q Syndrome. Hope this helps.

  Zoe

  October 13, 2008 at 11:23 am #21470
  plantcollector

  Member

  Zoe, thanks for the explanation of 5q- syndrome. That does sound like what I have been told also. Can you elaborate further about having 5q- as your only chromosome anomaly and NOT having 5q- syndrome. Now I am confused again. Thought I understood it. I do have high platelets along with moderate anemia and 5q- is my only chromosome anomaly. I do not have excess blasts. Maybe the answer lies in which genes are deleted on the 5q, or the number of blasts present. My BMB reports do indicate the pathologists agree on 5q- sydrome. Having knowledgeable people posting on the forum has really been a help to me. Thanks. Sylvia

  October 13, 2008 at 12:29 pm #21471
  Zoe

  Member

  Syvia,

  Sounds like you meet criteria for 5q Syndrome. Basically, if you have all “qualifications” listed above (5q can be the only the only chromosomal abnormality, platelets run normal to high, wbc is normal to slightly low, no excess blasts. Anemia tends to be moderate to severe.), you are considered 5q Syndrome. Anything out of whack with that you have 5q-, but not 5q Syndrome.

  Here is an article you might want to check out
  http://www.broad.mit.edu/news/97 If it goes to the home page instead (which it just did for me), go to the search function and type in 5q gene culprit.

  Also, you can google Molecular pathogenesis of the myelodysplastic
  syndromes, including the 5q- syndrome
  J. Boultwood, J. Wainscoat to find an article with some specifics on 5q syndrome. It is PDF, and I can’t figure out how to just post the web addy. Here is a quote from that article, “Using fluorescent in situ hybridization (FISH) and
  molecular mapping techniques our group identified
  the commonly deleted region (CDR) of the 5q- syndrome
  as the approximately 1.5 Mb interval at 5q32
  flanked by D5S413 and the GLRA1 gene.”

  http://asheducationbook.hematologylibrary.org/cgi/content/full/2006/1/192 is an article from “Blood,” specifically about 5q Syndrome.

  Zoe

  October 13, 2008 at 5:57 pm #21472
  billboy

  Participant

  Laurie & Zoe,

  You were quite right as I see the 5q-syndrome is listed as a separate MDS subtype in the WHO classification system. At the eMedicine link given below:

  http://209.85.165.104/search?q=cache:soX…ient=firefox- a

  that syndrome is characterized by: 5q-, less than 5% bone marrow blasts, normal or elevated platelet counts, longer survival, and increased response to Revlimid. So apparently if you had low platelets or greater than 5% blasts, your subtype would be something else even with the 5q-.
  Thanks for the references Zoe.

  Mary,

  I can’t remember why my doctor stopped after only four cycles of Dacogen. None of my counts were normal until after about six weeks from the end of the last cycle when my white count (and ANC) got into the normal range. My platelets and hemoglobin have never gotten close to normal. Currently my Hb is about 9.8 and my platelet count is 40. My Dacogen cycles were all five day cycles. The first cycle was at a dose of 20 mg/m2 and the last three were at 15 mg/m2. The elapsed time between starting first cycle and starting the second cycle was six weeks as was between the second and third cycles. The weeks between the start of the third and start of the fourth cycle was five.

  Bill F

  Bill F

  October 13, 2008 at 11:33 pm #21473
  plantcollector

  Member

  Zoe, thanks for the information. I will read this information you suggested and see if I can learn more about the subject of 5q-. Sylvia

  July 23, 2015 at 12:38 am #27125
  californiagirl

  Participant

  Hi, I’m new to this forum and just diagnosed with 5q- syndrome and on watch and wait. I’ve read so much that my head is spinning. I’m interested to know what everyone’s experience have been in the long run. Have many of you been able to continue working? What type of quality of life do I have to look forward to? Thanks.

  July 23, 2015 at 2:40 pm #27126
  Afreemanswife2

  Participant

  Hello, I’m new to this forum but I was with 5q- in Jan 2012. I am currently working. However, there are many times I don’t want to get out of bed and go to work.

  I go to M.D. Anderson in Houston, TX. My last Dr. Visit was in May and I don’t go back until September. My Hemoglobin was 9.6, WBC 2.2, RBC 2.7. My numbers have dropped a little every 3-4 months. I am on the Supportive Care which is the wait and watch.

  Thanks
  Patricia

  July 24, 2015 at 12:59 am #27127
  californiagirl

  Participant

  Hi Patricia, thanks for the information. While I was just diagnosed I think I’ve been un-diagnosed for at least a year. I chalked it up to “aging” My numbers have remained pretty stable for the last 6 months. My hemoglobin has been around 11, WBC 3.5 and RBC 3.2 +/- I feel pretty good overall and feel my best when I’m staying busy. I’m in between jobs right now (when I was diagnosed) so I’m debating about not working, working full-time, or working part-time. It sounds like you are fairly stable as well since you have been on watch/wait for several years. Are you still pretty active? How did you find out? – Colette

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