Hi to you all. I was diagnosed with severe Aplastic Anemia 14 years ago. I did not have a bone marrow match so I underwent experimental drug therapy in Seattle ( ATG, oxymethalone & methylprednisolone.) I'm living proof that miracles do happen. I am now the proud mom of two wonderful, healthy kids. Believe me I do know how frustrating and how hopeless this disease can make you feel. I really do believe that the power of positive thinking and a strong believe in God or whatever you believe in, is absolutely critical.
My niece (age 30) was diagnosed with Lukemia and cancer in her stomach and her intestines. We are all shocked and devastated by this news. I don't know what kind of Lukemia she has, only that she told me it was quite advanced. I am looking to hook her and her mom (my sister) up with a support group, books, tapes as I am ignorant of any/all groups and information about this disease. My extent of knowledge is that it is a terminal illness, but I don't know what its stages are. Please e-mail me with infor asap. Many thanks.
In Reply to: Re: MDS Aplastic Anemia, Lukemia posted by Luisa on April 16, 1998 at 11:40:48:
Dear Luisa,
If only a conventional medical approach is used, she is doomed (unless a trip to Lourdes creates a miracle. Of course, that would be against any conventional advice anyhow, wouldn't it?).
There is a wonderful network in the USA that is combining conventional medicine WITH all appropriate alternatives. If I were she, I would be going there for an evaluation. Call
Cancer Treatment Centers of America at (800) 515-1221 or 515-0176. Get all her records together to take to the center. This will save time & money.
This is ONLY hopeless if nothing but conventional approaches are used. Why, then, are not conventional physicians recommending these alternatives? Is this the "dog in the manger syndrome"? Alternatives are considered competition to the monopoly. Who is this supposed to be about anyhow? It is about the welfare of the patient not the welfare of the doc's monopoly.
Walt
Hi everyone! I have aplastic anemia. I did not have a related bone marrow match so I received the ATG/Cyclosporine treatment in October 1997. I just started reducing my Cyclosporine levels. I am doing fine. I try to stay positive and live each day to its fullest.
In Reply to: Re: aplastic anemia posted by Nina on April 20, 1998 at 01:23:24:
Dear Nina,
Thanks for your note. I hope you will also use this time to learn the most likely reasons you have this terrible condition so you can do something about that too. You are NOT a helpless pawn of the conventional medical monopoly UNLESS you choose to be so.
IF you are interested in helping yourself, as well as using conventional medicine, use the search feature for this BB & read everything you can find about AA. THEN, if you still have questions, write again.
Walt
Hi Everyone,
I was diagnosed with aplastic anemia in 1994. Since that time I have tried ATG, cylosporine to no avail. I discussed with my doctors at Johns Hopkins the idea of a bone marrow transplant - but no relatives were a match and due to my age and a non-related donor the odds (25%) just weren't good enought too go through this.
My HCT is around 25-26, Platelets 13,000 - white count has always remained just fine - thank goodness for some small favors.
I was started on EPO injections about two years ago. The EPO injections have stablized my HCT to around 25 - funtioning level - just can't run any marathons. Although I take an extra high dose 20,000 units 3 times a week. The cost is incredible.
I find that although I live with this disease everday - its a positive attitude and maintaining a normal lifestyle that helps when the up hill battles when they arise. I had a choice of going on disability or telecommuting - I choose to keep the job and having something to do everyday keeps the spirits high.
My family has been wonderful and picks up for me when the downtimes do arise. I am now a grandmother - which has really lightened the load.
I am a firm believer that your attitude in approaching this illness will cure more ills than any treatment they have available.
I have been following the Stem Cell trails at hopkins and NIH with interest. Looks like they may some new ways to treat this condition down the road. Also I was wondering if anyone knows how the trails are coming for Thrombopoetin (EPO for Platelets)?
I wish everyone with this problem all the best and would like to hear from all.
Bonnie
In Reply to: Re: aplastic anemia posted by Nina on April 20, 1998 at 01:23:24:
I HAVEN'T BEEN DIAGNOSED YET, HOWEVER MY INTERNAL MED. DOC SAYS IT DOESN'T LOOK GOOD. MY CBC HAS DROPPED WAY DOWN IN THE PAST MONTH, AND IRON SUPPS AND INJECTIONS DO NOTHING FOR ME. ANY INFO WOULD BE APPRECIATED
Dear Doctor, I am 83 and very very weak. Is there any thing I can do to regain some of my strength lost due to refactory sideribkastuc anemia? What is this kind of anemia anyway?
In Reply to: Re: refactory sideroblastic anemia posted by Roberta Segars on April 29, 1998 at 18:24:35:
Dear Doctor, I misspelled sideroblastic in my last message. It was correct in the Subject.
My mom might have one of the following diseases: paroxysmal nocturnal hemoglobinuria, myelodysplasia, or aplastic anemia. Can you send me some information on these diseases or a list of doctors that would have information? This would be greatly appreciated!
Melissa