Forum Replies Created
-
AuthorPosts
-
Neil
MemberHi Palacelaw,
Most patients on Vidaza experience a decline in counts just after starting. They should start to increase soon. Can be a difficult emotional experience waiting for the increase. Not sure how long it takes. Seems to vary a bit between patients.MemberHi Josie,
Will send a list of questions via E-mail.
It is imperative she sees a hematologist experienced in treating MDS!!
Most GPs and internists never see a case of MDS and are not prepared to deal with it.
How is your mothers health outside of MDS? MDS can create complications in other organs. She should be encouraged to lead a very healthy life style to keep her basic health as good as possible.
Has she ever had chemo for the treatment of cancer?
Procrit is a great drug if she responds. Did her doc check her erythropoietin and iron levels before prescribing it? It needs a good iron level to be successful.
Right now ther are lots of questions and lots of assumptions till more info is provided.MemberHi Collene,
Neglected to mentio some other significant points in yesterdays message.
Would not put too much faith in the prognosis info you will be reading in most MDS info. Most of it has been derived from 3 areas. Marrow blast percentage, Chromosome abnormalities and the number of lines involved (how low the counts are and if trending lower). You will note there is no mention of age. Most MDS patients are in their 50s to 70s. Many of them had MDS for a period before diagnosis. The survival rate for one in the 30s is much better.
It is very rare for a patient to succumb to MDS. About 30% transform to leukemia. These are usually in the RAEB1 and RAEB2 classifications. It is the complications MDS can create with other parts of the body that create difficulties. Heart problems, liver, pneumonia etc are the areas us older folks have to be aware of. Wallace has a big advantage in his age. Thus my comment in the earlier message about living a healthy lifestyle outside of the MDS.
Be sure to ask his docs about his risk level and how his age impacts the risk level.MemberHi Collene,
A BMT or SCT is an option considering your husbands age. There are some imporotant considerations that should be covered with his hemo and the transplant team.
If his sister is a perfect match he would have one hurdle out of the way.
The experience of the transplant team is critical!!. You want one that has had as much experience as possible!! This is not a time to be dealing with rookies!
You want to know how many SCTs/BMTs they have done? How many on patients his age.
How many were successful beyond 5 years.
How many were done on patients with his classification of MDS? How many of these were successful beyond 5 years? At his age.
Clarify how long it will take for recovery. It is not unusual to take almost 2 years.
The fatigue he feels is most likely due to his hemoglobin (HGB) level. Docs usually begin to transfuse (TX) at 8.0. All MDS patients have a different threshold for fatigue. Some feel rotten in the low 10s, others get down to the 6s. Much depends upon the the individual and their health/physical condition beyond MDS.
If he has to have a TX, make absolutely certain he gets irradiated/filtered blood! This is crucial if a BMT or SCT is planned. It will reduce many downstream problems. Would refuse any blood that is not irradiated and filtered!! Also do not use any blood donated by family members. It could cause problems with a BMT/SCT.
By all means, get the book that Bill recommended. There is a ton of info in the net on BMTs and SCTs. Take advantage of it.
One of the difficulties of either procedure is graft versus host disease. A mild case of GVHD is desireable. It is a positive indication the graft is taking. There are drugs that will control it, but it can be very uncomfortable.
Keep in mind all MDS patients are different. We respond differently to the disease and to treatments. What works for one may not be suitable for another.
In the meantime do everything possible to lead an otherwise healthful life style. I take a multi vitamin, Vitamin C and B Complex. Eat a low fat low carb diet. Get all the rest I need and all the exercise I can tolerate. Be sure to discuss these measures with his doc. It works for me, but his doc should agree.
I have some materials that I will send via E-mail if you included your address. Much too long for The Forum. Be sure you read over the educational materials available on the home page for this site.MemberAlso am a diabetic, but not on insulin.
Been on Procrit 15 months and so far can not recognize any influence on Glucose levels.
You might want to call Ortho Biotech and speak to one of their reps. They have a number for adverse effects. it is 1-800-325-7504MemberHo long ago did he have a BMT?
Is this part of the recovery process?
Is he improving since the BMT?MemberHave not had personal experience with the drugs. Have read considerable and have spoken to a few who have.
I share the 20q- Am taking Procrit to support RBC/HGB. Platelets are stable at 10,000 for about 5 years.
Would discuss these points with the docs.
Counts (particularly platelets) will decrease before going up. How much of a decrease?
Thalidomide usually starts at 50mg and builds to 400mg—maybe. The side effects can be very nasty to some people—not all. Nausea, total confusion, fever, rash, and more.
If counts go up it is generally temporary.
Revlimid is an analog of Thalidomide. The components that create the side effects are removed.
Why then risk the discomfort of Thalidomide?
Have you explored Procrit. No side effects.
Are your platelets stable? Any symptoms of low platelets?
How about WBC count? Any infection problems?
Those of use with a 20q- usually have a pretty good prognosis. What has your hematologist had to say regarding risk?MemberHi Drew,
The only routine considerations would be if she were participating in a clinical trial. Or if the doc can get the drug mfgr to pick up the cost.
Could be difficult now that Vidaza is FDA approved.
He WBC and Platelets look good. Need support for the red cells.MemberThere may be a treatment for MDS that is Hypocellular.It is antilymphocyte globulin.
It is used on Aplastic Anemia patients who have hypocellular marrow. Since AA & MDS are similar and the hypocellular marrow is common in this case it may be worth a discussion with your hematologist friend.MemberAm not a doc. Just 8 years of reading about MDS and discussing the disease with other patients.
We are not certain mom has multiple myloma. It is one of several possibilities. A BMB is the only way to confirm wahat it is and that is not going to happen.
Hope you get a good report on your mom and they can get control of all that is going on.
Basic health outside of MDS is very important. A patient must do all possible to maintain a healthy lifestyle.MemberHi Marsha,
Very good news.
Will be looking forward to more news of your progress.
You are in our thoughts and prayersMemberPlatelets only live about 5 days, maybe a little longer in some cases. They should be I/F also. Eventually one will become refractory to platelets. One can only have X number before they do not function any longer. The I/F platelets will not have any white cells in them. This will allow a match for a longer time before becoming refractory. I have had 2 patelet TX over 8 years. Only when surgery was necessary.
TX will not cure MDS but will relieve symptoms and help overall health. The I?F process removes leukocytes and reduces the risk of complications. Irradiation reduces the risk of graft versus host disease and filtering reduces the risk of becoming sensitized to proteins in the transfused blood and reduce the risk of transmitting cytomegalovirus.
It also helps to prevent the build-up of antibodies/antigens that may make it more difficult to locate blood that will match in the future.
RARS is one of the “better” classifications of MDS as long as they can keep her red cell up, manage platelets and white cells. TX is a common means of handling the reds. Have a friend who has had over 400 over the last 15 years.
Seeing her primary physician is very important. The possible complications of MDS on the rest of the body cannot be overlooked.
It is also very important to have a hematologist experienced in treating MDS!!! Particularly RARS.
There has been a huge amount of progress in treating MDS over the last year or so. The hemo must be current on the current knowledge. This is no time for on the job training.
In some cases docs will be reluctant to use I/F blood due to age, but it is rapidly becoming the standard.
There is a product available that may help. It Nosebleed QR. Available at Wal-Mart and most other drug stores. I keep it handy just in case.MemberIt will take a bit of time to find out what is actually going on. The 1/18 appointment may clarify some issues.
The following are discussion points for her hemo.
Did she have chemo for her previous cancer?
If so is she dealing with secondary MDS?
What classification of MDS does she have?
Her hemoblobin level is borderline for a transfusion (TX). They typically TX at 8.0, but her age might be a factor that lowers her TX threshold. IF she has a TX make certain they use irradiated/filtered blood. This could be important for matching her blood in the future. If the doc does not want to use I/F blood, make certain he/she tells you the reason!!Platelets can be difficult to assess. Counts can jump around a bit. It may take a few CBCs to see where they can settle in. There are no drugs that will grow platelets. There are a very few that may provide temporary help. Prednisone for example, but nasty side effects. Vitamin B6 may be of some help. My doc has me taking it. It might be kind of supportive. The consideration with platelets is symptoms. Bruising, bleeding and petechiae are symptoms of low platelets. There are situations where a patient may be able to tolerate a low plt count without symptoms while others have problems at higher levels. If there are symptoms a platelet TX would probably take place when they get below 10,000. Again they should use irradiated/filtered platelets.
The common approach is to find out what the options are to keep her RBC and Hemoglobin (HGB) from declining. Drugs such as Procrit and Aranesp might help.
You did not mention her white count (WBC). Is it in normal range?
All MDS patients are different. We respond to the disease and treatments differently.
Platelet count can vary, due to the accuracy of the equipment used to measure them. The tolerance is 15000 on counts between 50,000 and 500,000. When counts get below 50,000 the conts can be off a bit. It takes a series of CBCs to know the real level. There are times when they get very low. If there are no symptoms, it might be prudent to have a slide made and have a manual count to verify the situation. Techs who are not accustomed to seeing low counts tend to get alarmed when they encounter them.
Low HGB can cause fatigue/confusion. Red cells circulate oxygen throughout the body. It can have a noticible effect.
If you included your e-mail address in your profile I’ll send some info that is too long for the Forum.MemberJi Joy,
would get this info to your hematologist and primary physician.
NeilMemberHi Jim,
Some discussion points for her doc.
With RAEB & RAEB-t the goal is to keep blasts from increasing and to keep them from getting to the peripheral blood. How? Drugs? low dose chemo? WBC control is also important. Don’t want WBC to get too high, yet don;t want it to get low enough where infection is a risk. Drugs?
The equipment used to measure platelets is accurate within 15000 0n counts between 50000 and 500000. When platelets are low the equip. leaves something to be desired. Takes a series of CBCs over time to find where they will settle in. My plts have been in the 10,000 range for several years. have had readings as low as 3000 and as high as 19000, but the next reading will be back around 10,000. IF she had a TX shortly before a CBC is it reasonable to expect plts to go down? Adding more volume to the blood supply will tend to spread the existing plts over more volume. Does this in effect dilute the platelets? They typically live about 5 days, maybe a bit longer in some. The prime consideration with plts is symptoms. Is there bruising, bleeding or petechiae? Some people can have low counts and be asymptomatic. Others can have plt counts in the 75000 range and experience bruising and bleeding. Takes a bit of time to see how all this trends over time.
I keep a chart and graph of my RBC HGB PLT and WBC for each CBC. Would add blast count for her. It is easy to see a trend if one is developing. My numbers go back 8 years. Gets cumbersome, but also have a yearly chart/graph to clarify the long range trend -
AuthorPosts
