Telling Family & Friends

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• May 12, 2018 at 2:59 am #36444
  David

  Participant

  I was just recently diagnosed with MDS -5q, low risk. I’m 52, healthyish.

  The doctor “guaranteed” me 2 – 3 good years left, but then we need to look at bone marrow transplant, the median life expectancy for me is 5.3 years.

  My wife knows, my sister knows as she is my hopeful donor, but that’s it. When should I tell my kids (they are all adults with family of their own), my other siblings (step brother and sister), friends? I don’t want to be treated differently, I really don’t want to tell my kids I have 5.3 years left then live for 20 more years. Not that I don’t want to live that much longer, but hopefully you all know what I mean. If the disease progresses and it does come to bone marrow transplant then it is probably definitely time, but from what I understand, no one really knows. The median survival is 5.3 years, that means half the folks live less than that, half more.

  My father died of cancer, us kids (we were all adults with family of our own) were told about 2 weeks before he passed. I would have liked more time with him, but I also understand his point of view now as there are times when my wife just gets on my nerves being extra nice to me.

  May 12, 2018 at 9:58 am #36445
  Michael

  Participant

  This is a very personal decision. For me I told family and close friends. I am 66 and was diagnosed in June 2016 with MDS-MLD low risk. My sole cytopenia is neutropenia, with low ANC. I did not want others thinking I didn’t want to socialize with them but there would be instances when I had to avoid putting myself at risk of infection. With 8 grandkids I knew that there would be times of avoidance due to their illness. Likewise I play golf many times per week and wanted my playing partners to know that the lack of handshake was no disrespect. I resort to fist bumps.

  I remain on watch and wait, no treatments. I’ve been infection free with exception of skin abscesses that are nuisances. Best wishes.

  Also I’ve learned from my docs that this disease is very individual. The averages are just that and I don’t belabor them. It took time to reach my comfort level.

  May 12, 2018 at 11:24 am #36447
  stacey

  Participant

  David,

  I was diagnosed in Feb 2004 (over 14 years ago) with 5q- MDS at age 34. I have been taking 10 or 5 milligram Revlimid capsule off and on since and have never done a transplant. Is Revlimid an option for you…?
  I told my husband, only brother (potential match) and my mom (the worrier) right away. (My dad had previously passed away.) I didn’t tell any friends for a long time (years) until I was more comfortable. Maybe that had a lot to do with my mom’s reaction. My kids are just 10 and still don’t know. They haven’t noticed my regular monthly blood work or doctor appointments yet. For what it’s worth, I don’t plan on telling them unless there are ever obvious physical changes in my appearance from the disease or treatment that they would pick up on or if I knew I was going in within the year for a transplant. If they ever ask direct questions when they are much older, I would just say I have some “irregular cells” and leave it at that.
  Since you are newly diagnosed and low risk, I think you could wait a bit to tell your adult kids until you have more info on your treatment plan and what to expect. But this is a tough, personal decision, and hard to know what is best to do. I wish you best of luck. Take care,
  -Stacey

  May 14, 2018 at 9:33 am #36455
  Allan Romriell

  Participant

  David, I was 64 a year ago when diagnosed. I told my adult children(letting them decide on their own children) my mother and siblings and a few close friends but that was it. People at work and other friends and people I see occasionally have no idea, as I don’t look or act sick. I told those close to me that the odds are I would live quite a few years with my RARS low risk. The mean survival seems to be around 8 years and the progress so far has been very slow and my oncologist thinks I could go 3 or more years without treatment. It is a personal thing and everyone will react differently. I thought my kids and close family and friends should know, because it would effect them at some time. Just my 2 cents, all the best to you.

  May 15, 2018 at 9:05 pm #36476
  Donna

  Participant

  Hi……..I am so confused when I read everyone’s story because my BMB didn’t show “full MDS”, so I am called “pre-MDS”. It is a strange category. My blood counts are a lot lower than some that I see in this message board and there is talk of me starting probably Dacagen by the end of this year, when he expects my platelets will be at 50,000. I don’t understand if my treatment is the same, why the BMB did not show “full MDS” based on the 2016 WHO criteria. Blasts are 4%, WBC goes between 1.4 and 2.6, platelets 67,000, RBC 3.48, hemoglobin 10.9, ANC 1.31. I’m not sure what else is supposed to be there. I have mutations in SRFS2, ASXL1, RUNX1 and TET2. Anyone else have a picture similar to this. I like that I have not needed treatment, but I feel like there is this dark cloud following me. Understand what I mean??

  May 16, 2018 at 9:37 am #36481
  Allan Romriell

  Participant

  Donna, I know exactly what you mean with the dark cloud, or as I say I am a walking time bomb but I have no idea if I will go off and if so how big the explosion will be. All I can do is try to live my life the best possible but I still know it can change on a dime. As to your pre mds I don’t know what to tell you either. I think my numbers are all better than yours but I do have MDS with ringed sideroblasts which are a specific mds type so that is how they know I definitely have it. Maybe just the way some doctors evaluate it verses others? Don’t know. I wish you the best and hope you don’t need treatment any time soon.

  May 17, 2018 at 7:01 am #36486
  Michael

  Participant

  Donna

  While I’m aware of the dark cloud it no longer consumes me. It’s taken 1.5 years to shake the fear. I’ve had 4 BMB since June 2016. The original indicated RAEB 1, 5% blasts. The 3 following indicate RCMD less than 2% blasts. These 3 were done at center of excellence. RBC is consistently low but above 4 with hemoglobin around 12. Platlets always above 200. WBC always low, lowest .99 and highest 3. ANC always low mostly very low think 250 with high of 880. I have ASXL1, IDH1, and SRSF2 mutations. I have been on watch and wait. My local hematologist takes monthly blood draws but my MDS expert in NYC calls the shots. Being a numbers guy I have spreadsheets and charts detailing all results. My MDS expert has convinced me that how I feel is more important than the numbers. My only symptoms are lingering skin infections, which are more nuisance than anything.

  Like Alan suggests things can change on a dime. So far (2yrs) I’ve been stable. This helps me to live life caustiously to avoid infection but I’m committed to living life the best I can. I know I’m fortunate to not yet need treatment.

  I hope you find the peace I’ve found.

  May 17, 2018 at 8:58 am #36487
  Allan Romriell

  Participant

  Good Advise Michael, hope things continue good for you….

  May 17, 2018 at 8:55 pm #36498
  Donna

  Participant

  Michael and Alan………..Thanks for the response and the kind words. I know I am lucky to not need treatment. It’s just that there has been talk of treatment for over a year now and then, I don’t need it. Maybe if it wasn’t mentioned every visit, I would just assume that this could be a long way down the road. However, from the first time I had the genetic testing, etc., I was told I would need chemo. Then after the BMB didn’t show it, I am told most likely by the end of this year I will need chemo. My counts started going down in 2003 and I was referred to hematologist/oncologist around 2013, so it has all been gradual. I have lots of questions next visit. I signed up for one of the forums in July in Boston, so that should be interesting. There is also the first ever Walk for MDS being held in Boston July 20. It is 5 miles and I know I can’t walk that far, but I hope they get a good turnout just to bring awareness of MDS. I wish you both well. Donna

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