Do I or Don' I ?

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• March 12, 2009 at 3:08 pm #21886
  jlcram

  Member

  Hi everyone

  My name is Jeff. Back in October, I had a foot injury which when treated led me to finding out that I had a blood disorder. The ER doctor came in and said "have you ever had trouble with your blood?"

  Now, after seeing 2 specialists, having more blood drawn than I thought anyone could have, and 2 bone marrow biopsies later, I know nothing. Although my counts have been getting lower and lower, at this point my chromosomes show no changes so the specialist will not commit to the diagnosis of MDS. At the same time, he has typed my blood for a future bone marrow transplant if or when the need arises. I am now getting a CBC every two weeks.

  As far as my counts, the thing that is most concerning to them is my neutrophil count which has consistantly been low. the lowest was 0.2. My last was 0.5 and my platlets are cuttently 130. WBC 2.6. RBC 3.83

  So for now, we are just watching and waiting for things to get worse and oh, while I wait, try vitamins E, C, and Q-10 because the doctors are not sure that it will help but how can it hurt. haha.

  I’m very frustrated over all this. I was initially told that it was probably cancer before any further tests. My wife is worried, my family is worried, and for what?

  I’m just blowing off steam that has been building. Thanks for listening.

  Jeff

  March 12, 2009 at 5:14 pm #21887
  billboy

  Participant

  Hi Jeff,

  Sorry to learn that you’ve developed a problem with your blood. Bear in mind that chromosome changes are not a necessary condition for a diagnosis of MDS. They are an important factor to be sure, but MDS is a diagnosis of exclusion – there simply isn’t a single test that will confirm the condition. There are a lot of blood disorders that can affect your blood counts in a similar manner. I would rather know your hemoglobin count than the RBC. That said, your going to find that blood is incredibly complex – there is much that hematologists know, and also a great deal they don’t know. Your current RBC suggests that your hemoglobin is lower than desired, but not alarmingly low. Again, your platelet count is a bit low, but not really of a concern. On the other hand your absolute neutrophil count (ANC)is a concern as your ability to fight infections has been strained. Just do a search on neutropenia and you’ll find some guidelines for avoiding infections at different levels of ANC.

  Even if you are found to have MDS, take heart that, you may find that the type of MDS you have, is of the least virulent type. Also you may be a good candidate for a marrow transplant. See the following link for info:

  http://www.neutropenia.ca/research/mds.html

  Hope you get some kind of closure on the uncertainity soon.

  March 13, 2009 at 4:11 am #21889
  jaxem

  Member

  jeff
  you state you’ve had 2 biopsies. what were the results? If no chromosome defects, are there blasts? something is beating up your blood cells. what kind of specialists are you seeing? it seems to me with the counts you state, you shouldn’t be watching & waiting. are they giving you blood products & neupogen/neulasta to increase your counts?

  May 18, 2009 at 2:25 am #22053
  lindajo

  Member

  Jeff, I have been watching and waiting to get worse since 1991. That is right 18 years. I have not been able to work full time but I was still able to be a Mom. My daughter was 7 when I was diagnosed. She is now married with a son of her own.

  Worry won’t make you better. It won’t help your family either.Make sure to get an opinion from a center of excellence and get a good hematologist you can work with locally. There are many options now for treatment but don’t be afraid of watching and waiting. Yes it still really hard to be sick so much but it is possible to manage your disease.

  June 26, 2009 at 2:35 pm #22118
  jlcram

  Member

  Hi everyone

  It has been awhile since my first post. Thanks for your reponses. I’ll try to answer your questions and catch you up on whats been happening. I’ll start with giving you some recent blood counts which are at the lowest so far.

  WBC 2.4
  RBC 3.93
  HGB 14
  HCT 39.9
  PLT 38
  RDW 14
  MCV 102
  MCH 35.7
  MPV 9.4

  Auto Diff

  NEUT 0.2
  LYMPH 49.6
  MONO 28.2
  EOS 0.4
  BASO 1.9

  I have seen a specialist from Hershey Medical Center who again will not commit to a definate diognosis of MDS because there have been no chromosome changes. Both bone biopsy reports showed no blasts. His biggest concern again is my neutrophil counts which have been consistantly low. I have been typed for a bone marrow transplant should the need arise but at this time the doctors feel that the risk outways the benefits. At this point, I tend to agree. I have not been sick, although I don’t understand why since my neutrophil count is so low, so I take precautions as suggested and hope that is all works out. I currently see an specialist here and continue to have
  blood tests every couple of weeks. So far, no treatment because nothing has happened meaning "I have not contracted any infection." I have pretty much gone back to the way things were before I was told that I ‘probably had some form of cancer" If the doctors dont worry than why should I, right? I figure that if the day comes when I need to consider a more aggressive treatment then I’ll deal with it then. Again, its just watch and wait.
  If there are other questions, please ask. It can be difficult to cover everything as you all know very well.

  Thanks again for your interest and support

  Jeff

  June 26, 2009 at 3:37 pm #22119
  Mary4Mike

  Participant

  Hello Jeff,

  I don’t understand what "no chromosome changes" and no blasts have to do with an MDS diagnosis. My husband didn’t have chromosome changes for close to 9 years after his initial diagnosis and he has always shown <1% blasts. Have the doctors ever suggested Neulasta or Nuepogen for your wbc and neutrophils? Also, your platelets are pretty low.

  It is great that you feel so well. My husband has worked throughout this process. He would give anything for a HGB of 14. We are preparing for a transplant this fall. All the best to you.

  Mary

  June 26, 2009 at 6:15 pm #22120
  Anne G

  Member

  Hi Jeff

  I am in a similar situation to you. I have been diagnosed since 2005. I am in a wait and see circumstance. It is not just my neutophils that are effected, my platelets are low and my hgb is just slightly lower that yours. My neutrophils have not changed much since my diagnosis. I think it has only gone up to 0.5 twice in the last 4 yrs when i had really bad infections. I have been fortunate to have only been hospitalised twice in the 4 yrs, however you have to take care of yourself in order to maintain your wellness. It is a bummer to be diagnosed with MDS and whilst you maintain your wellness, take the opportunity to spend quality time with the family and friends and do the things you like doing best. I have to agree with lindajo, you cannot waste you time worrying, once you try to come to terms with disease you will take the best advice possible and learn to manage this disease to the best of your ability. wishing you the best of luck

  Anne

  June 26, 2009 at 6:33 pm #22121
  billboy

  Participant

  Hi Jeff,

  First of all, is the specialist you see a hematologist? I certainly hope so. I don’t know the reference ranges your lab shows on your cbc, but it appears your MCV is elevated and your MCHC is normal. This would be indicative of a macrocytic normochromic anemia, except you don’t have anemia in that your HGB seems to be within the reference range. Had it been low (reflecting anemia) the major causes to be considered would have been folate and vitamin B12 deficiency and refractory anemia. So it suggests that your folate and B12 should be checked and perhaps they already have been tested. By the way, of the three red blood cell measurements, RBC, hematocrit and hemoglobin, the hemoglobin is the most important. Next your differential counts look suspect or at least very unusual. The differential breaking out the five wbc types usually lists the percentages and then the absolute counts of each type of wbc. Your neutrophil count 0.2 must be in K/ml units which means that your ANC (absolute neutrophil count) is 200. This represents serious neutropenia – you’re pretty vulnerable to opportunistic infections. It’s the next four that look suspect, but then again maybe you have something very unusual. Your absolute lymphocyte, monocyte and basophil counts are at least an order of magnitude greater than the upper limit of my reference ranges for same. Your eosinophil count is "only" twice as high as the upper limit.

  I’ve had serious refractory anemia as my many red blood cell transfusions attest, but still have normal chromosones. Over the course of my disease my blast count has increased from 2 to 4 %.

  By the way how was your blast count expressed on your BMBs – zero or less than 1%?

  As Mary indicated MDS patients would love to have a hgb of 14!

  June 28, 2009 at 2:44 am #22122
  Hunter Bob

  Member

  Hi Jeff – I’m writing for my husband who is currently in the hospital trying to fight an infection. He was diagnosed with MDS in March.

  Right now his RBC count is 2.8, platelets 9, Hgb 8.8 and the ANC doesn’t even register on the test reports. He’s getting blood transfusions and platelets regularly.
  While he has this infection, they’re additionally giving him antibiotics to fight the infection and neupogen (sp.?) to try to bring up his neutrophil count so it will register at least .5 so they can send him home.

  While in good spirits, no pain, etc. it can take a toll on an MDS patient. We are always looking on the bright side, trying to do the things we love best — maybe just a little slower, but your blood counts are always on your mind.

  Bob’s had only 1 round of chemo so far and will start again as soon as this episode has past.

  Best of luck — do lots of research so you understand what they’re telling you and ask lots of questions.

  Hunter Bob’s wife.

  July 12, 2009 at 2:35 am #22142
  katydid

  Member

  Hi everyone – new to this form – in fact any forum – not something I do – also new to my diagnosis of MDS
  – intermediate 1. Have read all the preceeding stuff and don’t understand most of the medical stuff at all – we even count differently here over the other side of the world !!!!
  Anyway – still trying to get my head around what is happening to me – and other peoples reactions to it – any stories you have will be gratefully read by me !!!

  July 16, 2009 at 1:27 pm #22157
  jlcram

  Member

  Hello everyone

  To answer your question Mary, no my doctor has not suggested treatment of any kind at this point. Although my wbc and neutrophils are low, "I have not contracted any infections" He feels that my counts are low but stable at this point.

  Billboy, yes, I am seeing a hematologist/oncologist here in my hometown. My first bmb showed 1% blasts. I was referred on to the bone marrow transplant center in Hershey where another bmb was performed along with numerous other tests. That one showed 0% blasts. Both tests were said to be inconclusive. I have been typed for a future transplant if needed. Both doctors refuse to diognose MDS at this point. At my last visit he said that he feels my counts will not get better but again, at least they are stable right now and I have not been ill. So we continue to "watch and wait"

  So right now, I continue with blood tests to watch for any sudden changes, keep an eye on my health and wash my hands ALOT.

  Hunter Bob’s wife, thank for your advice. At this point I continue on and try not to worry about what might happen down the road. I hope your husband is feeling better.

  Katydid, Welcome to the forum. First, as everyone says, learn all that you can and ask all the questions you can think of to understand what is happening to you. It has helped me a great deal.

  Thank you all for your comments and support.

  Jeff

  July 19, 2009 at 10:44 am #22164
  katydid

  Member

  Hi Jeff – thanks for the welcome – and forgive my ignorance – but wht the need to wash your hands a lot ??
  Cathie

  July 27, 2009 at 2:21 pm #22178
  Alice S

  Participant

  Hi Katydid

  Infections are a major problem for MDS patients with compromized immune systems. Washing hands and cleanliness to prevent contact with bacteria etc is a must.

  Take care

  August 1, 2009 at 10:49 am #22179
  eve

  Member

  besides washing hands make sure you wash all the fruits and vegetables you eat before peeling them – otherwise you will be introducing bacteria under the skin as you cut or peel it

  eve

  August 3, 2009 at 7:13 am #22183
  katydid

  Member

  to be honest – and thank you all for your words and suggestions – I think I would rather die than have to live like a prisoner so scared of doing anything that might hurt me – I am not going to make my life a joke just to avoid this thing – I think I prefer to face it head on and make no compromises in how I live – then if it takes me down then so be it – and if I win then – well – I will be here telling everyone not to bow to this
  Cathie

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