Confused about CBC blasts
May 12, 2007 at 2:32 pm #18035jonelleMember
Dear Patti, Jack & SandyB,
I so appreciate all the responses and as I have seen time & again on this forum that there isn’t a standard answer to many of the questions we all have…
Patti, as you mentioned, I am sure that the Dr is indeed working on behalf of my Hb’s best interests and that if he felt it was an issue he would let us know. And please don’t be discouraged from posting on this forum! So many of us are eager to learn and get feedback from those who have experienced it first hand…
Questions, thoughts & ideas are expressed here that perhaps would be too itimidating to bring up face to face with the Dr. Among other reasons, this forum provides us Newbies with a way of “testing the waters”.
Again, thank you all.
JonelleMay 12, 2007 at 2:42 pm #18036SandyBMember
Good Morning Patti:
It seems that my last post offended you, and for that I apologize. I really was curious why you questioned me as to what my Dr. said and what I see on Mike’s CBC report. As you notice, our discussion has already put doubts in the mind of another member about her husbands CBC report.
(By the way, I do appreciate not being called a liar).
All of us here, have had and will have, different interpretations by our various health care professionals. MDS is one of the hardest dieseases to diagnose and treat, and every single patient has one or more unique circumstances affecting their treatment and response. Doctors are still in the learning process, as the rest of us are.
I know that you were very involved with your Mother-In-Laws treatment, which is admirable. My husband, of 40 Years today, has been going through this for almost two years, MDS to AML to MDS, and I as well have been very active in his treatment. I think everyone here has been just as involved as we have in making sure that their loved ones are getting the best.
The forum is a wonderful place to share information, but I think there is also some risk involved in some of the postings. We have all gone through the horror of initial diagnosis, the confusion about the disease, and the uncertainty of what to expect or do. If someone through their postings, advises others on what to do, I think it is extremely dangerous, especially for the new members. They obviously need direction, but that should remain the sole job of their own Dr.s, as we do not possess the education or experience that they do. We simply do not know what uniquesness there are, in their particular health situation.
I hope you do not decide to leave the forum. When I first became a member, you decided to leave and post elsewhere, but eventually came back.
Have a good day.
SandyMay 12, 2007 at 4:01 pm #18037
My blast, or when there is a lack of, are are always listed on my monthly CBC.
I’m more than certain that different doctors and different clinics can do things differently.
ChrisMay 12, 2007 at 4:16 pm #18038
Brilliant message. Thank you so much.
We’ve all tried so hard to get the message to Patti to no avail and many of us have lost our patience and tempers with her.
My gentlemen friend refers to Patti as an “excitist/alarmist.”
She can put the fear of God in you. I feel so sorry for the new folks when she constantly tells them to disregard what their doctor says because she took care of her mil for several years who is dead now and she, being Patti, knows better than your doctor.
The usual scenario is she will dramatically exit and there will be a movement to bring her back and she’ll drift back in with her “expert” advice all based on anecdotal experience. Oh, well… It feels good to get that off my chest.
Christine ThomasMay 13, 2007 at 2:36 am #18039pattiMember
I’d sure love an example of me putting “the fear of God” in anybody. All I have ever done is try to put out information on what mom was doing that was or wasn’t working for her so that others have other information they can explore. I think my byline says enough. You must think people are pretty stupid if you think they’ll run out and just blanket try something at someone elses recommendation without at least doing some research on it. I tend to think people are just a little more intelligent then that.
I don’t think I’ve told anyone to disregard their doctor. I’ve told them not to put all their faith in their doctor. Research, read, research. But don’t let someone blanket tell you what to do without a person having all of the facts. That, is just simple common sense.
And there are those who did everything their doctors said and they are dead now also. Your point? I haven’t yet met anyone who’s had AML and not treated it medically and still survived. My MIL went a year and a half. I’d say that’s not too bad. Most would die within months. You can call it anecdotal if you want.
Anyone living or taking care of someone with this disease has a lot to offer folks coming here because we’ve walked in those shoes. Because you don’t like our chosen method of treatment doesn’t mean it’s any less important for people to know there are other options. And I never said I know better then anyone’s doctor. What I have said is that most doctors know nothing about natural medicine and it’s wise to consult with an ND who knows the natural stuff. And, every doc I’ve met poo poos the natural and says it’s a waste of time so what help is that to someone looking for more information?
No, I don’t have a usual scenario. But I can name a few names of folks who do. Anything they don’t agree with as “by the doctors book” is suspect and therefore shouldn’t be mentioned. Quite frankly there are a lot of drugs being used anecdotally also. Danazol anyone?
Glad you feel better getting it off your chest. Nothing like ruining someon elses day to make yourself feel good. I left before because there is no human being that deserves to be treated the way some of you folks have treated me. I came back only because my MIL still had MDS/AML and I needed the support as much as anyone else here does. Despite what you might think, I am still human.
My wonderings were pertaining to the fact that mom is no longer here now, perhaps it’s time to bow out for that reason amongst others. The witch hunt will never end, will it?
Have a nice day.
pattiMay 13, 2007 at 3:51 am #18040
I’m sorry you feel so put upon. I really believe you mean well with your misguided notion that everyone else is an idiot and that they need you to direct them in what works and what dose they should take and disregard the doctors instructions, and what won’t work according to your “research” and your being the caregiver for your MIL.
You had two years “researching” and practicing (and I do mean that literally) on your MIL (may her soul rest in peace) and you are a self-proclaimed authority on MDS and AML. And you credit yourself for your MIL living a year and a half because of the choices you made for her treatment.
Actually, 4% of patients 65 or older survive 5 years with AML. 33% of the patients under 65 survive 5 years and those percentages on based on statistic taken over 5 years ago and may have improved by now.
It didn’t take much research to find those facts provided by the American Cancer Society.
Other information that you seem unaware of…as an example…
Since its founding in 2001, the Center for Integrative Medicine at The Cleveland Clinic has been dedicated to providing Complementary therapies.
The use of nutriceuticals (herbs and supplements) is the fastest growing segment of complementary medicine use. Patients who are using or considering such therapies would prefer to receive information from their physicians regarding risks and benefits rather than from their local health food store employee.
Patients are asking that their physicians incorporate evidence-based complementary modalities in their prescriptions for wellness in an integrative fashion.
Physicians are routinely updated on what works and what doesn’t. This information is used to counsel patients on herbs or supplements that have been shown to be very helpful for certain conditions (e.g. glucosamine for arthritis and saw palmetto for BPH), and those which should be avoided (e.g. kava and liver failure, or St. John’s Wort and herb-drug interactions).
And in closing, it seems to me misinformation to advise new patients that all medical doctors are insensitive to patients wanting to use these sources of treatment.
I am glad you can be with your young children once again and give them the loving care they’ve missed during your having to be away so much.
Be well.May 13, 2007 at 5:09 am #18041Jack_dup1Member
Chris and Sandy,
Very well written, I get scores of email from people who feel the same. Patti will be back, she needs the forum to fill some kind of void in her life.
JackMay 13, 2007 at 6:40 am #18042pattiMember
Christine, no, I do not credit myself for my MIL having lived as long as she did. First and foremost I credit the grace of God. Second, I credit Dr.Kou and Dr.Reuter (both naturapaths)fully for what they accomplished. Third, the statistics you stated are for those who accept chemo, not those who do not. For those with AML who do not do any chemo or standard medical therapy the statistics are much worse. In mom’s case, when she switched to AML, we were told two months at best. My MIL chose not do any chemo (that was her decision, not ours).
I am quite aware that complimentary medicine is a growing field. Too bad it doesn’t get advertised. It wasn’t until days before mom died I even learned the Hutch had such a program. When we contacted them we were turned away because mom wanted to do both natural and conventional therapy. Even though the program existed at the Hutch not even the people we talked to that worked there knew. It was another patient that ended up telling me this because she had used the program herself. The info is slowly coming out but it is not readily accepted by many (I’d dare say most) doctors.
Jack, the only void I have in my life right now is mom, thank you very much. Where’d you get your kindness from? I’d like to avoid it.
Mom is gone and it’s clearly time for me to move on. If folks want/need to ask me something they can PM or email me. As for you two, I can’t even wish you well at this moment.May 13, 2007 at 12:50 pm #18043
Patti states, “Third, the statistics you stated are for those who accept chemo, not those who do not.”
Would you please give a reference for that statement? That claim is not stated in the article from the Cancer Society.
“I am quite aware that complimentary medicine is a growing field. Too bad it doesn’t get advertised.”
It is “advertised” right on their website. Or, you could certainly ask if it’s available. You know everything else…how could you not know that, eh.
Or, for goodness sake, google complimentary medicine and myelodyspastic and it will give you the names of hospitals that offer it…MD
Patti you behave like a juvenile. If things don’t go your way…you pick up your marbles and run home.
God help your retarded sister-in-law who had been placed in your sole care, along with your M-I-L’s house and all her belongings.
I’m not so bitter that I can not wish you well. Being the good Christian that you claim to be, I will pray for you and your family to return to normalcy.May 13, 2007 at 5:18 pm #18044
“Quite frankly there are a lot of drugs being used anecdotally also. Danazol anyone?”
I counted at least 46 clinical studies for Danazol and Myelodysplastic Syndrome on Medline.
Patti, are you sure you know what “anecdotal” means???
If I was or had been a patient on Danazol and read what you wrote, I think I’d be worried. I think I would be fearful…May 13, 2007 at 8:33 pm #18045ZoeMember
Wow! I have missed something apparently. It is, however, discouraging to log on to see all this infighting. I don’t know what is going on behind the scenes, but I wish it would stay there. I have seen Patti try to incorporate words to stress she is presenting her opinion. Maybe PM’s are flying back and forth, I don’t know. Can we please stick to the topic and stop attacking people.
As for me, I have never seen blast count listed except on my BMB. That is from blood counts done at the hospital, hematologist, two different labs, and the cancer clinic. I always assumed they would only look for them if they saw something alarming, but there I go assuming again, so I reaaly don’t know.
ZoeMay 13, 2007 at 10:34 pm #18046shirlsgirlMember
In my opinion, I think this is a very important discussion. Since Patti has been on board she has said things that have insulted, horrified, and angered me and others so many times. (Including her most recent statement that Chris quoted …”Quite frankly there are a lot of drugs being used anecdotally also. Danazol anyone?”… I really don’t see that Patti is being attacked.
JodyMay 14, 2007 at 1:58 am #18047
The blast listed on the BMB is from the bone marrow which is hopefully less than 5%.
The blast listed on the CBC is from the peripheral blood.
To my knowledge, the hematologist determines which numbers are included on the CBC for the patient’s information, at least mine does.
You can also ask if any blast were seen in the peripheral blood.
Er, would I appear more knowledgeable if I list the number of cancer clinics, hospitals, hematologist, oncologist, labs and pathologist I’ve seen, been to or spoken with since 1996? I didn’t think so.May 16, 2007 at 3:43 am #18048Jack_dup1Member
I received my BMB results today, although my CBC said 1% blast in the blood, A manual count found no blast in the blood and 0.4% in the marrow.
JackMay 16, 2007 at 2:12 pm #18049Russ P.Member
Don’t give up – your comments and knowledge is very helpful and can be an encouragement. Consider your continued follow up as a ministry.
We all need to remember that each case of MDS is different and each doctor has different opinions. I only wish the disease and treatments were standard enough that there was only one right answer.
The best to you,
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