[Neil]

Hi Alice,
You should consider looking for a new doc that has more experience treating MDS.
Neopogen and Neulasta are drugs that increase White counts. They are essentially the same drug.
Neither will increase platelets. There is some evidence they will reduce platelets in some patients. At this time there is no drug that will grow platelets. There are clinicsl trials on anew drug that shows promise on ITP patients. It is Lonafarnib. Thus far no data on its effect on MDS patients wit low plts.
Remember platelet counts can vary by about 15,000 from CBC to CBC. It takes a series of CBCs to show if any count is trending. Platelets are the most difficult to deal with.
A doc experienced in treating MDS, particularly low platelets can help. Neupogen/ Neulasta may hel boosting WBC but not platelets.

[Neil]

Hi All,
Got through the surgery OK.
Have an incesion from behind my left ear down to my collar bone, then forward under my jaw to a point under my chin. They removed a mass the size of an egg and 7 lymph nodes. Pretty uncomfortable but tolerable. Hope to go home fri if the drainage stops.
Then we address the uptakes the PET scan showed in my lungs.

[Neil]

If you wish to learn more about blood cells use the following link.

http:// web2airmail.net/uthman/blood_cells.html

Lots of good info that is in understandable language.

[Neil]

Going back in the hospital 4/8/08 for more surgery. Seems the cancer has spread from the right side to the left side of my neck. This surgery will not be as severe as the last. 1 large tumor and 7 lymph nodes/
After the neck is resolved have a small tumor in each lung to resolve.
At this stage I think the 11 years of MDS has been a littlt bit easier to deal with than the last 6 months dealing with cancer surgery/radiation and chemo—-at least in my case. I recall suggesting MDS patients watch their health aside from MDS. This started from too much sun exposure back in the 1940s and 1950s. Just a small squmaous cell carcenoma that spread very rapidly.
Hope to be back on The Forum from the hospital when they let me out of bed.

[Neil]

Hi Becca,
It is hard to believe there was a misdiagnosis.
One of he differences between AA & MDS is AA patients usually have hypocellular marrow where most (not All) MDS patients have hypercellular marrow. Suspect he has hypocellular in view of the ATG treatment.
Would be inclined to wait for the results of the next BMB. An experienced pathologist should be able to intrepret the resuls in a day or two. The cytogenetics will take about 5 days. A comparison with prevoius BMBs should reveal any changes in his cell counts and if there are any abnormal chromosomes.
It is possible that the AA turned into MDS. There are a number of cases of this.
It is extremely important he sees a doc experienced in treating MDS if that turns out to be the case. The Cleveland Clinic has several.
At his age a stem cell transplant is a possibility. Hopefully he would have a compatible donor. If not a cord blood transplant may be in the cards.
It will take a while for all of this to flush out, but patience is difficult but sometimes necessary.
Once the actual disease is DX the options will narrow considerably.

[Neil]

I Lynne,
Your dosage seems high.
I have been on Procrit and now Aranesp for a number of years. My doc is quite comfortable with the drugs but I have a level of discomfort as a result of the recent publicity. At one time I was able to keep my HGB just under 12.0. Then we backed off to 11.O-11.5, usually around 11.1-11.2.
Now we are backing off further to 10.0. I really cant feel the difference between 10 and 11.
You might want to gather some of the info on Google and have a discussion with your doc. There could be very good reason for this approach at this time, but if the experience level, particulary with Procrit is not that great would have some further thoughts and discussions.

[Neil]

Hi Mbrio,
Secondary MDS presents more difficult treatment issues than the “standard variety”. Among other things the damage done to the marrow as a result of the previous chemo complicates matters.
Drugs such as Vidaza and decitibine can be expected to drive counts down before they begin to come up. Some patients are supported by drus such as Procrit, Aranesp and neupogen. A ton of factors to consider. Platelets are more difficult to assess. There are no drugs (today) that will grow platelets. But some patients survive on low platelet levels without severe problems. Depends upon if they display the typical symptoms of low platelets—bleeding, bruising or petechiae. If there are no symptoms there may be ways to boost the reds and whites and manage the platelets.
My platelets have been in the 10,000 range for many years. No symptoms, no transfusions (unless I am having surgery). There is a lot to think about and she needs a doc that is experienced with ite issues she presents.
Have a friend who is between 45 – 50 with secondary MDS. She has been managing her situation quite well. In fact he HGB has been rising while on Aranesp. WBC is low but manageable without any infection problems. Same with plats.
I am in the Mpls area also (Maple Grove). If you want to talk, phone me. 763-420-7774

[Neil]

It is possible. With MDS you will encounter many unusual events.
Was he taking any meds that might account for a change?

[Neil]

It will depend upon the chromosomes involved and her classification. Some chromosome abnormalities have a better prognosis than others.
RCMD with a 20q- has a pretty good prognosis.
RA with a 5q- presents some options for drugs that do well.
No blasts is a big plus. Hopefully they will not appear.
RA, RARS are the more “favorable” classes. RAEB generally is much more severe. RCMD usually has a good prognosis, but can present problems that make it more difficult to deal with.

[Neil]

Surprise!! Scientests/advisors for The FDA voted 13-1 to keep Procrit and Aranesp on the market.

[Neil]

Did you have a bone marrow biopsy?
MDS cannot be accurately diagnosed without a bone marrow biopsy.

[Neil]

You might wish to discuss switching to Desferal.
Not as convenient as Exjade but probably no conflict with EPO.
This is the first time I can recall that there was a problem with EPO and Exjade. Might want to follow up with his doc.

[Neil]

Would keep pushing the docs for all of the info ypu can gather. The more activity they generate the better, You can also go to the drug manufacturer for more info.
It is good you have the process going with Social Security. Remember when an application is approved, Social Security benefits will be paid for the sixth full month after the date the disability began. In many cases it takes much longer for approval.
Hopefully the tx will keep his red counts at a comfortable level.

[Neil]

By all means take it up with his doc.
I spoke to my radiation oncologist about it today.
EPO is a growth factor. It is intended to grow red cells. Apparently there is a possibility it can grow cells it was not intended to have any effect on.
My R/O indicated his info was that it involved chemo patients being treated for leukemia and lymphoma. He did not have any info of it impacting other forms of cancer.
Also plan to discuss it with my hemo onc. next week

[Neil]

Gail,
I am so sorry for your loss.

[Author]

Posts