our son(30 yr)has had mds since 1989,a few years after that with gradual complication by aa--he has had cortisone,immunosuppressives,rocaltrol,danatrol,roaccutan,megace,calcium spray,melatonin,polivitamins,folic acid,chelating agents,ALG,ATG,is politransfused(reds and plts),has hb6.4,reds1M7,whites5(he is also on erithropoietin and neupogen),plt5--he is losing about 1 1/2 gram evry week to ten days of reds and often has plt 2,which show no increase even with apheresis--he has left-sided heart enlargement,adrenal insuffuciency(with acquired Cushing's),and recent hypertension,plus pitting edema of the legs since about two months(Lasix alternate days),plus all the cutaneous manifestations and general malaise one would expect from this situation--his hematologist(at Rossi-Ferrini Ward in Florence)wants to try him on Il-11,we gather from what he says,as a last resort--our son has also tried the Di Bella cure(before it was well known)--the melatonin,etc,pranotherapy,is even doing acupunture(with very few bruises!)--he fights,he doesn't take refuge in denial--please tell us,what do you think of this case(from the fairly nontechnical and schematic recap),and what do you think of Il-11 in general and for this patient?Could you also describe its meccanisms and side effects?Any other suggestions(transplant seems out of the question)?--Thank you--ever hoping--steph
Follow Ups:
Re: interleukin 11 for mds-aa
Posted by Walt Stoll on November 22, 1998 at 09:04:37:
In Reply to: interleukin 11 for mds-aa posted by steph on November 21, 1998 at 17:38:13:
Dear steph,
I am going to assume that you are past the place where you want me to "beat around the bush".
If I am wrong about that, just let me know & feel free to ignore what I am saying here.
As you know by now, this is a terrible condition--fully as serious as any advanced cancer. His present path will inevitably lead to an early death. Even his present doc can see that. At this stage I would not advise against ANYTHING that might give him a little more TIME to actually get on a healing path. SO, with full disclosure (fully informed consent) I would consider the Interleukin II.
Next: this is not something either you nor I can resolve for him. HE HAS TO BECOME TOTALLY CONVINCED TO BECOME AN EXPERT IN THIS and be ready to make major life changes to accomplish what needs to be done. Until that happens, both of us are wasting our time. Just love him till he goes. Do not further complicate his life by urging him to learn and to do.
The quickest way for me to have input would be for him to read what it says about Health Coaching on this website and gather that information & put it on the BB where others with similar problems can watch the process of him learning and getting well again. If he doesn't want to do it publically, I charge for doing it privately since no one else will be helped with it done that way.
One thing I already know would be of major benefit to him is for him to read Dr Pelletier's classic (most recent edition) "Mind as Healer, Mind as Slayer". Even if he is not ready to get well, it would help YOU understand if YOU read it.
The more you know, the better you are going to survive what is to come if he is not ready to do this for himself.
Walt
Follow Ups:
Re: interleukin 11 for mds-aa
Posted by steph on December 05, 1998 at 18:39:24:
In Reply to: Re: interleukin 11 for mds-aa posted by Walt Stoll on November 22, 1998 at 09:04:37:
dear walt--thank you for answering so quickly--I couldn't get back to you immediately because of problems with my server.Our son is extremely well informed on his condition,he has archived his bloodwork and treatments in his computer since 1995,taking over from me(I did this from 1989);he demands full participation in diagnostic and treatment decisions(not such a common thing in Italy).The reason I wrote to you is that he doesn't have Internet,his written English is not the best,and I am a nurse so he avails himself of my professional services!I will follow your advice,and get back to you soonest,if he agrees to come online(with me as intermediary),I very much hope so,but cannot be sure,as he is a very private person--I think he will.though.At the moment,he is at a fairly decent 8.9hb,16,000 whites(he is still on neupogen),7000 plt.His dr is trying to find a clinical trial for the Il-11,from what I understand(this week he's in the USA,when he returns we can clear this up).Thank you again--till next time--steph