First Post First f/u with Hemat

[Louise71]

Hi everyone, I’ve been a visitor to this board and have learned so much about MDS, as well as learn firsthand how others deal with this disease. This is my first post.

In August, I saw a hematologist who my regular doctor referred me to when she couldn’t figure out the cause of my abnormal MCV (~102). The hematologist did a bone marrow biopsy, and I received a diagnosis of MDS-RA. She was leaving that day for a two week vacation and said that she had sent my sample for genetics testing but didn’t yet have results. I never called to find out the results of the test, and next week I am going to see her for my three-month follow-up.

I didn’t receive a ton of information from the hematologist, other than she told me that it was not necessary for me to do anything yet but get regularly monitored though she did mention that eventually I may need blood transfusions. She also thought, based on my 1998 blood test results that showed a MCV of 98 (it’s now ~103) that it is likely that my disease is progressing. I didn’t get any kind of prognosis from her. I retrieved all previous blood tests from my regular doctor, and saw the notes the hematologist had sent to her that indicated my bone marrow showed “hypercellular marrow with mild megaloblastoid changes in the RBC series.” My most recent CBC results showed WBC=3.7, RBC=3.4, Platelets=242, MPV=7.9, HGB=12.2 and HCT=35.5. Otherwise, I am 36 years old feel that I am in pretty good health, other than mild fatigue that I have attributed to a student schedule, too much caffeine, stress, and lack of regular exercise. I don’t know about % of blasts (is that part of the genetics results?).

I am going to see the hematologist for my first follow-up visit next week, and I was wondering if you could help me figure out what I need to ask her? I am also going to see Dr. Lewis Silverman at Mt. Sinai (I know he’s been mentioned on this board before) for a second opinion the following week.

Thanks so much for your help, I really appreciate it! I had a good friend die of leukemia several years ago, and know how devastating blood cancers can be. Your posts have been invaluable to me during this rough time. I have learned a lot of information and it’s helped me with feeling overwhelmed.

Best,
Louise/NYC

[Neil]

Hi Louise,
There are a few questions.
Follow up on the cytogenetics report. Find out if there are any abnormal Chromosomes.
Find out what they plan to do to prevent your counts from decreasing. Now and into the future.
As a rule MDS patients find their counts will decrease as they age. Fatigue increases as one ages and as red cell counts decrease.
Compare the options posed by your hemo & Dr Silverman. He does have loads of experience.
What do they suggest to support your body other than drugs. Exercise, vitamins, diet etc.
Find out their opinion of a stem cell transplant at some future date. There have been significant strides improving SCTs. At the current pace there might be a possibility the risks will be reduced in 5-10 years. Do they feel this might happen?
Many docs will view counts such as yours and suggest you delay any treatment till a point counts begin going down. Push them to see if they can suggest a treatment that does not have side effects worse than the disease. This is a tall order, but there is a lot happening in terms of research and you want a doc that is on the cutting edge!
You might ask their thoughts on the Vidaza/Vorinistat trials

[Louise71]

Hi Neil and thank you so much for your thoughtful reply! I will definitely ask my hematologist and MDS specialists those questions. And that’s promising news re:SCT.

It’s great to have another perspective besides “watch and wait”–it feels like just delaying the inevitable, but, if I can do anything to not progress that is far far better!

Best to you,and thanks for your reply and other helpful posts!

Rebecca

[jga_socal]

Hi. Ditto with Neil.
Dr. Silverman is the lead of a clinical trial using a cocktail of Vidaza and Vorinostat. Ira, a subject in that study, posted his ‘complete response’ results on this board. When you speak to Dr. Silverman maybe you can try to get more results from that trial! Is it working for the other mds patients? There should be around 35 other people in the trial.

Waiting for disease progression is an option not without risk. MDS can progress very suddenly to Leukemia. I have waited around 20 months from diagnosis. But now my own RBC production has completely shut down and I’m getting 2 pints of the red stuff every 2 weeks. I am currently waiting for a transplant date, dependent upon the donors schedule. But the ‘wait for progression’ is over for me, and I need to move forward. This Vorinostat study has me wondering a little. But I think the safest thing to do at this point is to continue on to get the transplant.

You asked about blasts. I will give you my version. Blasts are baby stem cells that havent decided what to be in life yet; a RBC, a WBC, a Platelet, or another stem cell. I think normal people have < 1% blasts in their marrow. The normal little tykes quickly commit to a career as one of the 4 major types of myloid cells and thus become useful members of marrow society. For people with MDS, the baby stem cells start sticking around, never growing up. Sounds like some teenagers I know… It turns out there is a very complex messaging system in the hematopoietic system that ‘tells’ the blasts what to become. Apparently the little sick blasts stop listening to the messages. It’s almost as if the blasts have little iPods and are listening to their rap music full blast, drowning out important instructions. They become un-useful members of the marrow society. These ‘bad’ blasts, when some of them do finally commit to adulthood as a stem cell, carry their bad iPod habits with them; they give birth to more blasts that do not listen and commit. The blasts counts, given as a percentage of blasts vs. other cells, will rise, and your RBC, WBC, and/or Platelet counts will sink accordingly. Sometimes blasts will be happy to commit as a WBC or a Platelet but will not commit to be a RBC. When a blast only wants to be a WBC and your stem cells go hyperactive producing WBCs, then you have a leukemia. Blasts can be found in your marrow and your peripheral blood. If your marrow blast percentage is less than 5%, it generally means you are in the early stages of MDS. If 5% – 20%, you are in an intermediate stage. If over 20% you are in the later stages or you are leukemic. I’ve never seen a study indicating how fast the progression of mis-wired stem cells take place. The key problem is that the mis-wired stem cells have a ‘proliferative advantage’, they push out the normal stem cells. This is one of the least understood attributes of cancer cells, the ability to survive and populate with more success than normal cells. By the way, I see you are a newbie with MDS. I am very sorry for your diagnosis. Not so long ago such a diagnosis was tantamount to a death sentence. But today there is much cause for hope, especially for someone of your young age. Please keep us posted.
Jim

[choijk]

Wow Jim,

Thanks for the info! Even though I feel like I’ve done a lot of research on MDS, this is really good stuff. Thank you for putting it in lay man’s terms.

You mentioned that you are receiving 2 rbs every 2 weeks. Does this mean that your bone marrow is completely shut down? My father receives about 2 pints every 2 weeks as well.

The interesting thing is, last CBC my father was at a 8.1. Usually the hema transfuses my dad when my dad gets to around the 8. But this time, he asked if my father wanted to be transfused or wait until he goes to the 6’s. I know everyone is different and some can handle low hgb better than others. But the hema said that my father is probably accustomed to the low hgb now and he said it would be okay to let my dad go home without the transfusion.

When is a low hgb bad for the body? It was my understanding that when a person has low hgb, one usualy doesnt get enough oxygen into their systen and this could strain the organs; for instance, heart attacks. Any thoughts?

[Zoe]

Jim,

Thank you for your great description! I love it. Can I copy to send to some friends who want to understand better. I will give you credit. With three teen girls in my home, I laughed all the way through your definition.

Zoe

[jga_socal]

June,
It’s 9:42am Fri morn and I have to leave now to get my 44th and 45th pint of donated blood. Whoopie! Yes, I think I’ve reached the phase of complete RBC shutdown, needing 2 pints every 2 weeks. At this pace my Hgb is cycling from around 8.2 to 10. It is uncomfortable for me to get below 9. So, I’m going to ask the good doc if I can get 2 pints next week which will change my Hgb cycle to a low of 9 and a hight of 11. At any rate, I’m going in for a sct in the next 4 weeks so maybe it doesnt matter.
I have recently learned more about RBC transfusions (the hard way) and will post on this topic later today or tomorrow. The post will be very important to those who are RBC transfusion dependent AND may be candidates for a future stem cell transplant.
Time for a nap in the big recliner now…..
Jim

[Louise71]

Hi Jim and thank you so much for your thoughtful and informative reply!  Your description of blasts especially RBC production and abnormal cell proliferation is very helpful.  I love the ipod descriptions–cell phones would also be an appropriate metaphor!

I am really looking forward to meeting Dr. Silverman and hearing more about the vorinistat trial.  Ira has been extremely kind in sharing his experiences, and in looking briefly at the information posted on the NCI website, I’m definitely interested to know more.  If I find anything more about results of the trial, I will post this information to the group (will be seeing Dr. Silverman in about two weeks).

Thanks very much for sharing your experience with your disease progression, and I hope your plans for transplant proceed smoothly.  I look forward to hearing more about your experiences with RBC transfusions, and I hope you experience a high HGB in the coming weeks.

This board has been so helpful in helping me understand MDS and also to learn from and be heard by others coping with it.  I admit, it’s been pretty challenging to share this experience with my loved ones, even if their intentions are to be supportive.  Some of their responses range from “You’ll be fine–this may not even affect you for a long long time” to “Stop reading or you’ll just worry more.”  I haven’t told my parents yet as they will want to stick me in a bubble (my mom in particular) as well as consume themselves with endless worry.  Finding this forum and reading the different threads and your responses to my post are helping me a lot, so thank you!   

All the best,
Louise

[Ira N.]

Hi Louise,

Just a note of encouragement, and wishes for your restored health! One thing I don’t think I mentioned before is that I was able to give myself the Vidaza injections at home. This saved me anywhere from 2-5 hours a day for 7 days a month, from having to go the Montefiore Cancer Center in the Bronx. Though they are great and caring people working there, they are very busy and the nurses have to wait for the pharmacists to reconstitue the Vidaza and prepare the correct dosage according to your wieght. At home I could do all the preparations and administer the injections (2 each day) all in 5-10 mins. It made a world of difference in my quality of life.

Feel free to contact me at ira44@optonline.net anytime. I understand what you’re going through!

Wishing you Peace, Love, and Health!

Ira Neuringer

[Author]

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