new to forum

[lucym]

Hello All,
Much questions, help needed. My mom in March 05 at the age of 61 diag. with MDS through routine physical. No treatment given no real signs of disorder other than fatigue. 12/13/05 with platlets of 30 she received a platlet trans so she could under go a cataract operation. 01/11/06 she passed out rushed to hospital, platlets at 9, WBC, RBC below 3. Urinary Tract infection found. on 1/13/06 bone marrow biopsy done, 2 test back given diag of hypoplastic MDS. She has received 4 plat trasfusion as of today we are platelts back at 9 (after droping to 7) WBC 2.0 RBC 2.93. We are waiting for a 3rd test to decide on treatment. I am looking for any information on treatments. Conventional or Homeopathic. Also when my Mom has her platlet trans she is shivering so much and they need to sedate her with Benadryl and Demerall. Any other suggestions?

[lynette]

Welcome to the Forum. I’m sorry to hear about your Mom. Is she being treated at a Center of Excellence? I see from your posting that you are from Westchester. My Mom lives in Dutchess Co., and I am a Nursing Instructor at Westchester Community College. The closest Center of Excellence is in NYC. Although, Northern Westchester Hospital is an affiliate of New York _Presbyterian(my Mom was treated there). Also, Phelps Memorial Hospital is an affiliate of Memorial Sloan Ket.
Do you know the number of blasts that were found at the time of the bmb? This is important is determining a treatment plan.
The shivering that your Mom experienced was most likely a reaction to the platelets. Benadryl, Demerol, and Steriods are commonly used to counter-act this side effect.
I know it is difficult–but hang in there.
Lynette

[lucym]

Thanks Lynette,
My Mom is currently at Westchester Medical Center under the care of Dr. Liu and Dr. Amhad. According to the list NY Medical College and West. Med Center are a center of exellence, is this information incorrect?

[Neil]

Hi Lucy,
Have a few thoughts to think about and discuss with her docs.
Make certain she is seeing a hematologist experienced in treating MDS, particularly her classification of MDS. The more MDS patients treated with her classification the better! This is important! Many docs never see a case of MDS. She does not need one who is getting “on the job training”!
Has she ever had chemo or radiation for cancer treatment?
Any abnormal chromosomes?
There is a huge difference between classes. As a rule the prognosis between those with RA/RARS and RAEB/CMML is like night and day.
Appropriate treatment can make a huge difference.
Fatigue is from a low red count. If RBC and HGB are low she will typically be tired. WBC fights infection. Platelets handle clotting.
You commented her platelets are low and she has had platelet transfusions.
Does she have any symptoms of low platelets? Any bruising, bleeding or petechiae? If there are no symptoms, would discuss the timing of future platelet TX. Sometimes a patient without symptoms can get by for extended periods without TX. Ask her doc about her platelet situation. Does she have hypercellular or hypocellular marrow. Those with hypo generally suffer from a very low platelet ( also low RBC/WBC) production issue. Those with hyper usually produce huge quantities of platelets, most of them abnormal. Some cells are abnormal, they clone and produce more abnormal cells that are identified, killed off and disposed of in a normal process. (a simple explaination) Frequently there is a normal strain of cells that produces normal platelets, but in lower quantities. If they are truly normal there might be enough to get a patient by with few clotting issues. If this is the case and there are no symptoms it may be wise to evaluate the wisdom of platelet TX based on platelet count alone. Symptoms should be considered.
Most docs see a 10,000 count and automatically go into TX mode. It might not be necessary if she has fully functioning platelets that handle her clotting issues.
The equipment used to measure platelets is accurate within 15,000 on counts between 50,000 and 500,000. When counts get lower particularly around 10,000 it takes a series of blood tests to determine where they actually are. There have been times when I went to 3,000. Rather than jump to conclusions based on that test, my doc had a slide made and physically counted them. They were at 10,000. I can get by very well at this level without symptoms or a TX. Believe it is a quality versus quantity issue. A few normal platelets are better than many abnormal. Some patients have symptoms with counts over 75,000 while others can go much lower.
If platelet TX is recommended there are some basics to discuss.
Always have Benedryl and Tylenol administered about 45 minutes before the TX. They usually prevent reactions.
ALWAYS, ALWAYS have her get irradiated platelets!
Platelets should not have any traces of white cells in them at the time of TX. If multiple bags are used try to make sure they are from the same donor. Would be great if all platelets she were to receive were from the same donor.
If they are not irradiated it is possible antibodies will develop and eventually she will become refractory to transfused platelets.They wont be able to find any that will match. There is evidence single donor platelets last longer and get the count higher than mixed. Remember they only last from 5 to 10 days. Sometimes a bit longer depending on the patient.
They want to do everything possible to extend that time till a patient becomes refractory. The number a platelet TX a patient can get varies from patient to patient.
Her RBC and HGB may be helped with drugs such as Procrit or Aranesp. They are artificial erythropoietin, a substance normally produced in the kidneys that triggers the marrow to produce red cells. IF her erythropoietin level is low to normal one of these drugs might help. Her iron level must be checked also. Both drugs need iron to function. Neither will function properly with low iron levels. A supplement is necessary.
Procrit has certainly changed my life. Have been on it for 26 months and it has brought my HGB to 11.0 – 11.9 — at the point I get a shot. Higher between shots. It has also had an effect on my WBC and platelets. They get a boost between shots, but settle back to their expected range when I get another shot. This is rare! It does not occur often, but it is possible.
There have been many advances in MDS treatments over the last year. New drugs Vidaza and Revlimid have recd. FDA approval. They will help some patients.
At this point there are no drugs that will help produce platelets long term. A few are in trials, but will be a while till we see if they will work.
I have some good articles on MDS and a list of drugs that inhibit platelet production/function in some people. If you want me to sent them send me your e-mail address—to: nnnn@comcast.net
Remember. Think about this info. See how it applies to your Mom and discuss those points that do apply with her doc.

[Jerry]

Lucy …

Wow!! You will never get a better answer than Neil gave you. I believe God put him on this earth to inform and help all of us with MDS. I am your mother’s age and I take Procrit twice a week and it has kept my hemoglobin in the “near normal” range. The last time it was checked, it was 13.4. (I actually have an appointment with the hemo today so I will get another count). With the Procrit I feel wonderful. So, keep asking questions, get to a Center of Excellence and most of all, stay positive. Many people live many years with this disease. Good luck …

Jerry

[lucym]

Well my Mom’s platelet count went down to 5, I am wondering if this means after 5 platelet transfusions she has already become refractory? Anyone have any ideas?

[Billy’s Dad]

…..You’re in good hands here Kiddo. Take in all the information you’ll find from these forum members, and learn to live by what they have to offer. Don’t be ashamed to ask questions.

[lucym]

Thanks Billy’s Dad, awesome news about your son, I am so happy to hear it. In less than 24 hours I have come to realize how great all these members are and I am truly greatful I found this site.

[lynette]

Lucy,
Hi and I hope that your Mom is doing better. I have know Dr. Ahmed for 20 yrs, and he is an excellent Oncologist. He is well respected. However, I do not believe that he is the Director of the Leukemia program. Dr. Karen Seiter is the Director. Perhaps her insight might be helpful. We did not take my Mom to WCMC. New York Presbyterian had more to offer in terms of Clinical Trials for patients over 70 yrs. old.
Be strong.
Lynette

[Neil]

Hi Lucy,
Note Dr Ahmed is an oncologist.
You might ask to have a hematologist with MDS experience added to her team —if there isnt one there now.
She really needs someone with a thorough background in platelet problems on her team.
Not always the easiest doc to find.
Did they take a second sample?
Sometime it takes a little time for platelets to circulate. Remember the average body has about 5 liters of blood. In that 5 liters there is about a cup of white cells, a shot glass full of red cells and a teaspoonfull of platelets. Not always that easy to measure,particularly when they are on the low side.
Bet the count is up with a second sample.
Did they rerun the sample? When they see my count the lab always does a retake. It is SOP to take enough of a sampe for more that one test with patients with a history of low plts at my docs lab.
You might ask a discreet question or two to find some answers.
Neil

[lynette]

Hi Lucy,
It sounds like Neil had the concerns that I had regarding your Mom’s medical team. Dr. Ahmed is the Chief of Neoplastic Diseases. However, Dr. Robert Lerner is the Chief of Hematology. He has many years of experience at WCMC, but I do not know how many cases of MDS are seen there. It is at times very difficult to coordinate care with several different sub-specialites. I have a Clinical Teaching appointment at WCMC, and 90% of the patients complain that there is a lack of communication. You will need to be an advocate for your Mom.
Lynette

[lucym]

Lynette and Neil,
Dr. Deloung Liu is another Dr. on her team, I beleive he is her hemotologist although she has been seeing Dr. Amhed since her diagnosis in March. I am not sure how many cases of MDS they see, but according to the site they are a Center for Excellence. Mom had another plt tx tonight, they stretched it out over 3 hours hoping she would not have reaction, they gave her demerol and benedryl before. she had the worst reaction yet, her heart rate was up, her blood pressure was up and she had a temp of 102. I just got home from the hospital after a dose of Adavan (sp) she was breathing and resting comfortably. Tomorrow we meet with both Dr.’s to discuss final results and treatment options. I have set up with another Dr. at MSKCC Dr. Virginia Klimek, my Mom saw her in June to confirm diagnosis of MDS. When you say is my Mom bleeding or bruising what exactly do you mean? She is seriously brusied from when they originally took blood in the ER (nightmare) But they are taking blood cultures daily and tonight they did a Blood Gass and she always stops bleeding very quickly. It is my gut feeling to stop the plt tx and see if we can give her something else to boost maybe the procrit or such. She is such a mess after tx that she does not eat and so tired that I think she uses all her energy on that. Convincing the Dr.’s is going to be a little difficult. Thank you so much for all the info, keep it coming I can use all of it.

[Neil]

Hi Lucy,
Am referring to spontaneous bleeding. Could be from no apparent reason or from a small nick/cut. Bruising could appear anywhere on her body.Typically on the face. Looks like the patient was in an accident.
The bruising and small amt of bleeding associated with a TX or blood sample is normal. We all experience that.
If she still does not have any symptoms of low plts,would have a discussion with the doc about when to TX. Would be inclined to stick with their recommendations, but emphasize the symptoms point.
Do you think her reaction to plt TX could be emotional? It happens. As a rule Benedryl and Tylenol prevent reactions.
Has her MDS classification been determined?
Would question the docs about Procrit/Aranesp. It may help her red counts and make her feel much better.
You might want to prepare a list of questions for the docs. It is very easy to skip over some points during a conversation. Some docs are tough to pin down. They have a heavy schedule and tend to rush. You need to get them aside and get their undivided attention till you are satisfied all of your questions are addressed and answered—or they will get back with an answer for those questions they do not have immediate answers for.

[lucym]

Neil,
Today Plt count was 10 I asked Dr.’s to skip tx today……they were not thrilled but said OK. I asked about giving her something for WBC they had prescribed nupigen (sp). When asked about the Procrit/Arsnap they said it was for RBC. I don’t get it b/c that is down too. I also gave her some Beta Glucan to enhance her immune system, if interested check out http://www.transferpoint.com. An Uncle of mine had great help keeping his blood healthy while fighting prostate cancer some years back. They are saying the marrow is hypoplastic and they are thinking of trying the horse drug. Anyone try this horse drug? Any information is appreciated. I am not sure what the megakaryocytes are. Do they get that from the BMB? I will ask tomorrow. Thanks again

[Neil]

Hi Lucy,
Procrit may help her red counts if her erythropoietin count is low , maybe normal. Its wortha try to find out.
Anything yet on her blast count ant MDS classification?
The horse drug they are referring to is ATG (antithymocytic globulin) it is used to treat Aplastric Anemia. Since AA patients have hypocellular marrow they probably feel it might be worth trying. Make certain you clarify the SIDE EFFECTS! They can be very severe! Since ATG is a horese serum the allergic reactions can be terrible. Tremors, fever, hallucination and more.Takes a couple of weeks in the hospital. The results on AA patients is pretty good. Not the same with MDS patients. Get their thoughts on success and risk!
Megakaryocytes are cells that produce platelets and get the info from her BMB.
The reason I ask is mine have gone up over the years in a response to the low platelet level. The body responding to the low count in an effort to produce more.
Thanks for the info on Beta Glucan. Will look it up.

[Author]

Posts