[Neil]

Hi Bev
This might be time to look at the statistics.
What are the experienes of a 59 yr old with RAEB 2, his level of chromosome damage and monosomy 7 on:
Revlamid 3mo? 6 mo?
Vidaza 3 mo? 6 mo?
compared to a cord blood transplant?
It is easy to get caught up in the hope of a transplant, but at 35%. This needs thought.
You may wish to have more conversations with DR Steensma and the docs at Fairview so you can develop the best set of options possible.
Has anyone offered a prognosis better than the original 9-18 months?

[Neil]

Hi George,
Quite a few of us have your experience.
My counts went down for several years, leveled off for a few years, went down a bit more til I started on Procrit then Aranesp. Then held for about 5 more years.
There is a lot more for you to reveal before any of us can really share experiences.
Age, class of MDS, any treatments, abnormal chromosomes,any blasts in the marrow any in the peripheral blood, any transfusions?
Take a look through some of the older postings. Lots to read about.
You will note the change in many of the messages since the approval of Vidaza, Dacogen and Revlamid.
You will also note there is a huge variation in risk between those with RA, RARS and those with RAEB. RCMD and CMML will have both high and low risk patients.
One thing you will find is none of us are alike. We all respond differently to the disease and to treatments. What works for one may or may not work for another.
A few years ago you would find patients who went for many years on a transfusion every other week. Since the approval of Vidaza, Dacogen and Revlamid some patients have found they do not need transfusions as frequently for maybe a year or two.
AN experienced hematologist is really necessary. At one time it was difficult to find a doc with much experience. Since more and more of us have MDS the experience level had gone up. Eleven years ago my doc had treated a few patients but I was the only active one he had for a few years. Now there are about 7-8 and 2 have passed away.
Lots to learn and lots to think about.
Also, keep in touch with your internist! You want to make certain your MDS does now occupy all of your time. I also have type 2 diabetes and have been dealing with treatment for head and neck cancer for the last 4 months. You must keep track of the rest of your health while dealing with your MDS. A year ago I felt that after 10 years of MDS I could handle anything. After 4 months of going through surgery, radiation, chemo, throat therapy and physical therapy, I don’t feel so invinceble.
Make certain you are getting the best possible care, have a great support team with friends and family, and educate yourself on your version of MDS. You will find it is much easier to deal with it if you have a good grasp of the disease and what you can expect downstream. Lots you might be able to do to make that trip downstream more comfortable and slower with a good understanding of what has happened to you, is happening to you and will likely happen in the future.
Remember the progress over the last 2-3 years has been significant. Hopefully it is just the beginning of a possible better future for MDS patients!

[Neil]

Hi Morticia,
There are a couple points in your message that need more clarification.
Waiting till March 5 is a long time. As Jack pointed out CBC results are available in 10 minutes. Why wait 10 days.
If your Red Cell counts are low it could explain your fatigue. Not enough oxygen getting to your cells.
If your other counts are not normal and they tend to suggest a disease like MDS you should be seeing a hematologist and or oncologist. The doc you are seeing now is over her head. It is possible you will need a bone marrow biopsy to confirm what the problem is.
In any event you should probably call the doc and if your counts are abnormal have her refer you to a specialist rather than wait til 3/5

[Neil]

Hi Ken,
I can appreciate the scaring! After 11 years I would not even guess how many CBCs I’ve had.
There might be a way of getting before and after Hemoglobin levels from the poke you get for the TX. They can take a sample before connecting the TX line. I think there is a way to get a sample after the TX is over. You may have to wait a bit so they are not sampling 100% TX blood. Worth asking the question.
I looked up the side effects of Cyclosporin, but did not find a reference to fatigue.
Maybe someone else on the Forum has something to contribute. It would not surprise me to find there could be an effect on energy levels

[Neil]

Hi Zeke,
Try this link. It lists several docs that list hematology as a specialty in Tulsa. There is also a list in the upper corner of the page that will show you hemos in other cities in northeast OK
http://www.healthgrades.com/local-doctors-directory/byspecialty/hematology
You will have to contact them, interview them & pick 1 or 2 that have MDS experience

[Neil]

Hi Ken,
Do you get a HGB reading after each TX?
If so are the HGB levels close?
If you do not know Your HGB after a TX there might be a variation that may account for thee way you feel.
Toward the end of my radiation treatment my HGB dropped from the 11.1 range to 8.7 and 8.8. At this point I cant feel any difference between 11.1 and 8.7.
We moved the Aranesp interval to 2 weeks and am now at 9.1. Hope the closer interval and no more radiation and cetuximab will result in my counts going back to the way they were— crummy as they were I was acustomed to them and was able to deal with them.

[Neil]

The Univ Fairview has released some impressive info but be sure to ask questions!!! It is one thing to perform many transplants but are they relative?
How many were performed on patients with RAEB? Those performed on patients with other diseases do not have any bearing on a patient with RAEB. How many of these were successful? Successful at 5 years?
Now many were on men 59 yrs old with RAEB? How many successful.
How many of those performed on men over 2oo lbs have been successful?
Lots and lots of questions that create more questions. Be sure you are comfortable with the answers. If not keep probing till you are.
I have a friend who had a SCT there. He went through hell several times over, but he is past 6 years now and is doing very well. They did some rather radical procedures to get him through.
It is a great facility with a wonderful staff. The more info you are able to learn from them the better your understanding of all that may be going on.

[Neil]

If you elect to go to Mayo Rochester be certain to see Dr David Steensma. He is one of the best in the country.
You did not mention his blast level. Was there any discussion on them & how they would attempt to reduce them. Are there blasts in the peripheral blood?
Would also ask about Vidaza and Dacogen. They have been used on patients with RAEB.
There are a few chemo protocols that may help.
The high number of damaged chromosomes will complicate the options.
Would also look at Univ Of MN. They have some recent success with cord blood transplants, but are restricted by blast levels.
Would get all of the best info from the docs available. The Univ of MN and Mayo are close enough to make 2 or 3 opinions possible.

[Neil]

Hi Bergit,
Most MDS patients that are TX dependent find they will be on a 14 day routine. There are all types of exceptions but 14 days seems to be the norm.
It is very difficult to predict if the interval will become shorter in the future. there are too many variables involved between patients.
most patients get a tx when HGB is about 8.0. There are others who have to get them at higher HGB levels and there are others who can go lower.
Be absolutely certain you are getting irradiated/filtered packed red cells. This is imperative! It will prevent future problems and certainly allow a patient to have more tx over an extended period of time. It will also insure you will not have compatibility problems in the future.
Another practice most follow is to take tylenol and benedryl about an hour before the tx. They help prevent reactions to the donated blood.

[Neil]

Hi Zoe,
MDS and 103 degree temps are not a good combo. Would get it checked out as soon as possible and make certain you take all the antibiotics.
There are too many other things that happen to us that we tend to ignore because of the MDS. Better to have a little egg on your face tomorrow than to find out you have the beginnings of am long term something you could have avoided.

[Neil]

Hi Margaret,
About a year ago my sister in law attended a meeting at the NIH. One of the topics was MUDs.
The presenter was Dr Richard Childs. Apparently he has had considerable success with them.
If you google him at: Dr Richard Childs NIH you will get his basic info. If you click on research info you will find much much more of interest. Contacting him may provide a significant amount of insight.
These are really tough decisions and the more info one has the easier the decision when the time comes.
There was a rather significant amount of info on MUDs that became available at a year to a year and one half ago. It has been some of the most encouraging offered for years.
Another possibility is a cord blood transplant. The Univ. of Minnesota has some recent success stories that are worth reviewing.
After personally dealing with MDS for 11 years there is finally some real progress. If the research over the last 2-3 years continues there might be a light at the end of the tunnel.
It is getting difficult to keep up with it all.
Hope you husband can benefit.

[Neil]

Hi Margaret,
I would follow up with the docs on the platelet issue. There is no benefit in waiting till they go down. That is if they go down.
Another thought. Are you sure the docs were referring to the transplant? Is it possible they were looking at his hips. Hip replacements are not permanent. They last 20 years or so depending upon many factors. Could it be they want to wait on the hip to avoid doing 2 replacements on his hips over time?
As a rule and considering the info you provided One would think they would prefer to do a BMT/SCT at as young an age as possible. Platelets at 58000 would pose some risk. Think they would want them higher.
You might wish to get a second opinion. Dr List at Moffett in Tampa is excellent and might provide more insight.

[Neil]

Hi Lynnee,
It is difficult to determine why one would be getting weaker. We are all so different in our response to the disease and treatments.
One would think a HGB level of 11 would be adequate.
You may wish to have a check up from an internist to see if there might be something else going on aside from MDS and the recent heart issues. Could be a number of reasons that would not be related. I see my internist at least 3 times a year to make sure the rest of my body is functioning as it should.
As we age we tend to become weary a bit earlier than in the past, but at 52 you should feel pretty good —most of the time.
I have taken vitamin C, Vitamin B6 and a multi vitamin for a number of years. They seem to have helped my overall situation.

[Neil]

Hi Suzanne,
It has been difficult.
Mouth and throat are very sore and difficult to eat. Skin at the radiation sites is still intact, but very close to cracking.
Have 6 more radiation sessions and 1 cetuximab left. Then recovery. Can expect about a week of going downhill before healing begins.
At least I was able to aviod a feeding tube. Am 1 pound over my starting weight.

[Neil]

Hi Shari,
Not sure my comments will apply to your dad, but they will sure validate that we are all different. My platelet count hovered around 10,000 for about 7-8 years with no symptoms.
On 11/6/07 I had surgery for head and neck cancer. Had 3 six packs that day. Have been on radiation and cetuximab since 12/11. My weekly counts since 11/12 are: 22000, 11000, 10000,40,000, 24000, 21000, 51000, 18000, 55000.
The 22000 on 11/12 can be explained by the 3 tx. But the 40000 reading took place the day before the radiation and cetuximab started. Am going in tomorrow for another CBC and cetuximab. HAve a number of curious onlookers wondering what they will be.
Had a few nosebleeds just before a CBC and there are those who feel the counts went up in response for a demand for more platelets.
At the same time my WBC has jumped around. Am usually at 1.1 and have gone as high as 2.5 and 2.7
No changes in my reds.
None of my docs are offering any opinions. All are wondering what will occur after 2/6 when radiation and cetuximab are over.

[Author]

Posts