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lucym
MemberHi Lynette,
Can you tell me what is ANC? What is normal range? Where is it on CBC/Chem report? My Mom back in hospital since Sunday, 2nd round of Decitibine just as hard as first, she had a lot of diarreha, doctors concerned she may have ulcer or something they wanted to do a GI test but dark stools have stopped (just like they did last month)she is feeling much better now after get tx’s. Doctor says Mom is making her own red blood cells, how he knows that I am not sure so hopefully this drug is working. Mom is also having alot of pain in her ankles, shin area doctor says it may be the bone marrow working again? Who knows.
Hope your Mom gets good results, I am very excited about this drug even though my Mom seems to be the only one having such bad side effects.
LucyMemberSusan,
My Mom has responded to my siblings (her children’s)platlets while before she was not going above 10 with a transfusion. I would just tell the doctor you want to try and do a directed donor transfusion. Contact the local blood bank and find out what is required. If it works great if not you have not lost anything but a little time to donate.
Tell Patrick to hang in there, things will get better, he must believe that. Try to get him to keep eating, small meals a few times a day he needs to keep up his strength. You are all in my thoughts.
LucyMemberPatti,
My Mom has had several PICC’s and now she has a porta-cath. One time her plt count was below 5 and they removed and inserted a new PICC. She did get an infection they have been giving her IV antib. in the doctors office so she did not have to go into the hospital. I will continue to keep you both in my prayers. As for the family donations, the doctors were not very helpful I had to arrange it all with the blood bank. The doctor only needed to fax the order for blood and plt transfusions. My Mom received a patient and file number and then we just made an appointment with the directed donor line. Who is the blood provider in your area? Is it the Red Cross? If I can help you at all please do not hesitate to ask.
LucyMemberDennis,
My Mom started her 2nd round of decitbine today. Her Onc had asked us if we wanted to try Vidaza instead, he felt they were the same medication just in different forms. I called both Pharma company’s today and they both said they are the same type of treatment, both are DNA agents working to get the correct DNA cells that have been dormant during disease working again. You may want to try it, you should know within about 8 weeks if it is working. I understand what you are saying about even if it works for how long? But if you look at the last year or so 3 drugs have come out for MDS. If the decitbine works for 12 months who knows what drugs they will come out with in that time. Just a thought. All the best, LucyMemberFran,
I used to be a travel agent, usually if you book your insurance with in 7 days of placing your deposit all pre existing conditions are covered. What you want to be sure of if you have an emergency on the trip that you are
covered to be transport you to hospital. Book your trip, it will be nice for you both to look forward too, this CBC was not bad hopefully the next will be better.My Mom had some lower back pain at the start of her diagnosis, her MRI showed nothing. We figured it was her bone marrow making more cells never really found out, it seems better now.
Best of luck with your pacemaker, our thoughts are with you.
LucyMemberPatti,
Find out from your MIL doctor where they get their blood products from (hopefully it is the same place as the hospital where she will have the port procedure)My Mom’s doctor/hospital gets them from the NY Blood Center,we contacted the blood center directly and found out the information. Hope this helps.
All the best
LucyMemberJanice,
We have been directly donating platlets to my Mom for about a month now. At the NY Blood Center in Elmsford, NY (Westchester County) and they do not charge for directed donor platelets. We are going to start directly donating blood soon, I was told there is usually a fee I believe it was about $150.00 but then I was told because my family has ran 2 blood drives in the last 6 months (collecting over 90 units of blood)and are planning another one for the fall that we would not be charged. You should try to connect with someone at the blood bank that your Dad’s doctor uses and see if you can work something out. Having a blood drive is not that hard just a little time. My Mom has a lot of friends and family and they were all looking for a way to help so we booked the local Eagles Hall and called/emailed and people just showed up.
As far as family platlets helping, my Mom in hospital could not get above 10 and she was being tx every day. After my brother donated she went to 67, she went 2 days with out a transfusion, so now that she is out of the hospital we take turns donating once a week and she has an HLA matched donor who is donating weekly (very nice thing for a stranger to do) and she gets tx on Tues and Fri (although today her plt count was 15 so we are holding off until tomorrow.) Sorry for rambling, hopfully some of it helped.
LucyMemberDennis,
My Mom has refractory AML nothing has been able to put her in remission. She had 5 days of decitabine starting June 23. She is off for 28 days. For the past 7 days my Mom has needed 4 pints of rb and 3 plt tx. Today 9 days after finishing treatment she did not need a tx. Her HGB was 11.5 and plt 24 (sounds low but very very good for my Mom). Mom has been suffering with diarrehea but that has subsided in the last 48 hours and she is getting her strength back. I asked the doctor about blasts in her blood today (they were 89% 9 days ago) and his reply was with this type of chemo he does not expect anything to happen until after 2nd cycle and that is consistant with what the press release says. He also gave her a shot of procrit hoping she will make more Red Blood cells to hold off further blood tx. My Mom has always had plt issues, 5 days ago they were 3, she received a tx from my sister and they went up to 60 but two days later were down to 15, got more plt and today 24. We take one day at a time and we have had 2 good days in a row so we are most happy.
Hope the information is helpful, all the best
LucyMemberPatti,
I hope you will reconsider. If not I hope you will email me with your updates on your Mom-in-law. Thanks for all your information, I never felt you were pushing me in any directions only trying to help. All the best to you and your family.
LucyMemberWe have told the doctors about the dark stool, but with a WBC of .08 they will not do a scope because of infection issues. We are caught. Today Mom’s HGB was 8.4 she is getting 2 more units of red blood. Platlets were 10 after going to 68 on Monday (after she got my sister’s plt.) Very frustrating.
LucyMemberJim,
Yesterday was 7 days after my Mom finished her 5 days of Dacogen. We went to the doctor, she had a terrrible episode with vomiting and diarrehea. Then she got her blood drawn, HGB was at 6.9 plt 3. The doctor wanted to start her on fluids and admitt her, my Mom said No way. I said lets give her plt and red blood and then make a decision. She got a tx of my sisters plt and then went to 68. Then 2 pint of red blood. After 6 hours at the doctor’s office and 3 tx the doctor came in and said, you look like a different person, my mom replied I feel like a different person and I am going home. Doctor said OK be sure to drink plenty of gatorade and she will go back there tomorrow. I am hoping the excessive black diarreaha is the bad blasts leaving her system and that we will see some drop in blast count. Thanks for the information you gave me a little more hope. Be well.
LucyMemberToday was a better day…..we took my Mom home. She was so happy to be back in her house after 8 weeks in the hospital. She ate more today than she has in a week, she was also awake a lot more. Hopefully in the next 28 days we will get her mentally and physically stronger to handle another chemo treatment. Her wbc 1.3(but they say that is mostly blasts which I don’t quit understand) plt 61(after tx from my brother)RBC 10.2 after 3 units. But those blasts are still there, we are just taking it one day at a time. Thanks for the words of encouragement. Wishing better days for us all
LucyMemberKristy,
I am so happy to hear your Mom is home, thanks for the info. Perhaps the diarreha is something else, not the chemo. I do hope this works for my Mom. How many people are in the study with your Mom? Do they all have MDS progressed to AML? Would you be able to give me the contact of the study I would like to ask alot of questions. My Mom is the first patient they are using the drug on. They have been using it in studies but I don’t think with anyone with AML only those with MDS. Thanks again for the post
Hoping this is the answer for a least a little while.
LucyMemberTEMBO, Frank if they will not prescribe the Revlimid how about the Decitabine? It was approved for all types of MDS. My Mom (who has progressed to AML)just started it today.
LucyMemberThanks Janice for the update, I was hoping you and/or Kristy would respond since they have got AML and are trying this drug. A little worried since my Mom did not respond to any of the other treatments but here’s hoping. Mom’s counts are already pretty low but they have been lower. We have set up so my siblings and I can donate plts and one of my brothers has the same blood type so we will be donating red blood too, better than HLA matched. Tell your Dad to have a great trip, prior to having my third child I was a travel agent. I always loved sending people on that trip (I wish I could get the courage to take my 3 kids…..perhaps when they are a little older). Keep us posted…..All the Best
Lucy -
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