[Neil]

Hi Zoe,
Thanks for the kind thoughts. You could be on the money.The surgeon mentioned much the same. Another thought occured— have had quantum amounts of saline and antibiotics all IV. could be my cells are diluted by all the fluids. Really keeping them busy measuring output. will be curious to find out what my hematocrit is since it volume sensitive. would love to see it between 34-35.

[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

[Neil]

Hi bety,
There is no mention of a BMB requirement for the Lonafarnib trial.
There is a lot of info in the Fall 2006 edition of The MDS News. All of the eligiblity requirements are listed.
you can contact the MDS Foundation at 1-888-813-1260 for info.
Trials in your area are at New York Presbyterian, contact is Dr Eric Feldman and New York Medical College, contact is Dr Karen Seiter.
Its likely there are more that are not listed in that issue.

[Neil]

Hi bety,
Did Eds doc ever do a manual count when his counts got low and there was no bleeding?
The irradiated/filtered plts and single donor plts (if he gets more than bag at a time) will lengthen the time TX will be effective.
Did you ever talk to his doc about a clinical trial on Lonafarnib?

[Neil]

Hi bety,
The threshold for platelet TX varies from patient to patient.
As a rule a doc will get concerned when platelets reach 20,000. They almost go into automatic TX preperation at 10,000.
There are a number of factors to consider before starting a TX.
Is the platelet count accurate? At one tome I had a count of 3,000. The staff was ready to send me to the TX center ,but my doc ordered a manual count. A slide was made and the count was actually around 10,000.
Are there any symptoms of low platelets? Some of us hover around the 10,000 range with no symptoms. Others present with bleeding, bruising petechiae at 50,000. Much depends upon the quality of the normal platelets included in the count.
In my case I have a number of megakaryocytes that produce many many abnormal plts. They are identified, killed off and flushed in a normal process.
At the same time I have some megakaryocytes that produce some normal platelets, in sufficient quantity to handle my clotting needs.
I have had to have a plt TX when extensive dental surgery was needed and when I had a hernia repair. Dental required a six pack. The hernia required 2 six packs.
I have noticed another situation over the years. If I get nicked or banged up enough to produce bleeding that is minor or controlable my platelet count will go up. I had a needle biopsy on 10/15. On 10/18 my plt count was 22,000. The previous count was 10,000. I fell and banged up my nose. A couple days later plts were 23,000. Last January I got a respiratory infection and was movig toward pneumonia. Had a anti-biotic and albuterol. My plts went to 97,000. Two weeks later they were at 9,000.
Some of us have enough cells producing normal plts that compensate for bleeding episodes. Others may not.
One of the lessons my doc taught me is to avoid panic. Take a few minutes and think out the situation. Is a run to the ER necessary?
Since I am on Aranesp I get a CBC and injection every 3 weeks. At one time while on a clinical trial I had a CBC every other day. All of my counts since 1998 have been recorded on an Excel spreadsheet and a graph. Have another chart/graph that lists my counts as of June 15 of each year. This is a very easy way to see if a trend is developing and to track long term counts.

Hope I helped. Since we are all so different in our responses not all situations can be compared. At the beginning I wanted to be very aggressive and try all the drugs available. My doc reined me in and explained how counts may vary from week to week. Since I was not in a high risk situation he kept a cool head and a wait and see posture. It has worked for over 10 years. (The question is: how much longer will it work)?
Other patients have different sets of complications. Some may benefit from this or a similar approach. Other patients that are high risk would probably need a more aggressive approach.

[Neil]

Hi Zoe,
You experience with Aranesp is much like mine. Have been on it since 6/29/06 after almost 3 years on Procrit.
My HGB has bounced around from 11.9 to 10.5. It seems that it will drop with one injection and go up with the next. Can’t really say it has been consistent. I started at 200mcg and went to 300.
Amgen and J&J want a dosage that will keep HGB at 12.0 or lower to avoid any possible clotting or heart issues,
I do not feel much difference between a period when I am at 10.5 vs 11.5. Am on a 3 week interval between shots. Suspect my counts would be a little higher if it was a 2 week interval.
If you feel your counts are getting lower over time you might want to discuss raising the dosage. An increase in dosage and a longer interval between injections might be a possibility. It is a lot more convenient.

[Neil]

It would be very difficult to arrive at a prognosis at this time.
His:
MDS classification
Blast count (if any)
Abnormal chromosomes
Cell counts over the next few months
Bone Marrow Biopsy results
will all be used in the determination of his prognosis. His counts look pretty good. The platelets bear watching, but if he does not have any symptoms of low platelets so much the better.
My platelets are generally in the 10,000 range. They dip to 6,000 or go up to 11,000, but long term hang in at 10,000. I am asymptomatic. On the other hand patients with platelets between 50,000 and 75,000 can have bruising and bleeding issues. It takes a bit of time to see how they will react.
Most of the material published prior to 2005 is pretty obsolete. The basics are still sound, but items such as length of survival are not valid any longer. There have been substantial advances in MDS reasearch and treatment over the las 2 plus years.
Would hope he has an associate that is a hemotologist or oncologist that can provide him/you with the current thinking on treatment and drug options.
His HGB at 10.5 is not that bad—unless he feels fatigue. As we age the threshold for fatigue becomes lower. If fatigue becomes an issue drugs such as Procrit or Aranesp may boost his red cell counts and get more oxygen to his body.
WBC at 2.0 is pretty good. In my case my doc focuses on my ANC. If it gets to 500 he would start me on a drug such as Neupogen.
There are no drugs that will grow platelets at this time. There ar several trials underway with Lonafarnib. It is probably too soon the have any difinitive results.
Most of us with a low risk diagnosis play the waiting game. I have been waiting and watching for over 10 years. Others with intermediate to hih risk DX are generally more aggressive with their treatment. Age gets much consideration. Some of the drugs can have some nasty side effects. There are times when the side effects may be worse than the disease.
Diabetes seems to be independent of MDS. At least it is in my situation. I can control my glucose with diet, exercise and meds. Not quite the same with MDS.
I found the more I learned about my class of MDS and my particular situation the easier it has been to deal with.
At the beginning it was pretty scary, and I pretty well kept thing to myself. As time passed and with more and more knowledge I opened up more with my family. We seldom talk about MDS unless my counts start moving lower of some other issue presents itself.
If you can get him to open up a bit and discuss his feelings it could help.

[Neil]

Hi Jennifer,
Lots of questions most of which should be discussed between her and her doc.
The fact she survived a liver transplant raises a question. Has she ever had chemo for her liver problems? If yes, is her MDS considered to be therapy related or secondary MDS?
How old is she?
Which class of MDS does she have?
Does she have any blasts?
Has she had any transfusions?
Is her doc experienced in treating MDS? This is extremely important!! If she is being treated by the same doc that handled her liver situation that doc may need some help from another doc that has MDS experience.
Age is important. Bone Marrow Transplants are becoming fewer and fewer. They are done on younger patients. Stem Cell Transplants are becoming more successful than a full blown BMT. Usually no radiation and less toxic chemo.
Would want to know how many BMTs and/or SCTs the doc has done on MDS patients with her classification and age!!!!!! And what was the 5 year survival rate????
Have any drugs been discussed? Vidaza, Revlimid, Dacogen, Arsenic Trioxide etc?
MDS research has been very good over the last 2 years. There are many advances in drugs and a huge increase in understanding the disease and how to treat it.
Again it is very important to have a doc experienced in treating MDS. If a BMT or SCT is necessary it is imperative that she is treated a a facility that has done many, many of them and they have been successful!! There have been lots of BMTs And SCTs, but how many patients HER AGE survived beyond 5 years.
Can her doc refer her to any other patients that can provide some insight into MDS. There is a huge amount to learn about her particular situation. The more knowledge one can develop on their particular class of MDS, the easier it is to understand and cope. MDS patients are all different. We respond differently to the disease and to treatment. What works for one may or may not work for another. supportive care works quite well for low risk patients. Intermediate and high risk patients are another matter

[Neil]

Hi Bob,
Has your doc provided a blast level?
Have you discussed either Procrit or Aranesp to boost red counts?
Dacogen might function in place of Vidaza.
Did the doc comment on the increase in WBC?

[Neil]

An HGB of 11.5 is not that bad. Lets hope it stays in that range.
The first few months can be pretty difficult.
If his doc approves a hunting trip and he is not too far from help —if he should need it he should be fine.
I have had MDS for 10 1/2 years and still feel pretty good. Have my bad days, lots of good ones.

[Neil]

Was looking for his hemoglobin count.
Was wondering if 10.2 was his HGB.
Believe we are working with counts on 2 different scales. For example on the scale my doc uses:
RBC normal is 4.5-5.4
HGB normal is 13.5-18.0
Sometimes there is some confusion between HGB and RBC.
If you wish you can the following link to a great site on Blood Cells and the CBC:

http://web2.airmail.net//uthman/blood_cells.html

A great site that is in pretty reasonable language. I printed about 30 pages for reference.

[Neil]

You may wish to clarify his RBC. If it is 1.02 he is not getting enough oxygen to his organs, particularly his heart. If his HGB is 10.2 his red cels are fairly low and could explain why he gets out of breath.
If his RBC is really 1.02 what is his HGB?

[Neil]

Am not sure about Rituxan specifically, but it is not uncommon for chemo patients to develop Secondary MDS or Therapy-Related MDS as a result of the chemo.
Not all chemo patients get it, but many do.
Secondary MDS is very difficult to treat.

[Neil]

Hi Jack,
I had a hernia repair 2-3 years ago.
Plts were in the 10,000 range. They gave me 2 bags of Irradiated/filtered plts and brought them up to 53,000.
The surgeon would not do a laproscopsy (sp). He did the older procedure. His concern was that he might nt see a possible bleed with the newer more current laproscopic technique since he could not see the area behind the mesh after it was installed. The older technique involved a larger incesion — maybe 2″ at the most but revealed more of the area. He felt more comfortable with this process. Healing time was a little longer, but overall did not have any problems.
The surgeon, my hemo and internist all conferred over the event.

[Neil]

Hi Jim,
I experience much the same. I went over 4 years without a cold. But had 3 over the last 2 years. Last winter I had one that was really nasty.
An explaination I found a few years ago may make sense. Seems there are hundreds of viruses. Once we are exposed to one we become immune to it. If a new one develops we would be likely to become ill, if exposed to it.
I have been taking vitamin C daily (1000MG). If I feel a cold coming on I go to about 3000MG . Seems to work fairly well. There have been times I get a sniffle, take 3000MG for a few days and might get a cold sore, but no cold or flu. Happens a few times over the winter.
I avoid crowds, kids with colds etc.

[Author]

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