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Jerry
MemberHi …
I take 200 mg of Danazol in the morning and 200 mg in the evening to try to help my platelets … I also take Aranesp and Neulasta … so far, I cannot tell you that the Danazol is working and I have been on it for about 6 months … hope this helps a bit
JerryMemberHappy New year ….
Went to http://www.pdso.org and got a Public Defender’s org. Is there another website? Thank you ….
JerryMemberJack …
Absolutely correct … I got hooked on Dristan once and it was a bear to get off of … the Afrin as this doc recommended is to be used only to stop nosebleeds because it constricts the blood vessels.Chuck … Afrin is an OTC nasal spry that can be quite addictive … in fact, I think the instructions say to not use it more than 3 days … but this is a different usage and would not be used daily …
My platelet numbers are currently around 12 … very very low … but they have been as low as 7 … as far as my chromosomal abnormalities go, I do not have them at my fingertips but suffice to say there are several which puts me into a higher risk category.
Jerry
MemberSandy …
I am a little confused as to where you are, but you mentioned Sloan Kettering in NYC. If I were you, I would call Audrey Hassan here at the MDS Foundation and see if she can get you an emergency appointment in NYC. She did wonders for me at Cleveland Clinic. Her number is 1-800-MDS-0839. Good luck.
Jerry
MemberKWJ …
I am going for a transfusion today, one Monday, another Tuesday and then Debbie and I are going to New York for the Heisman Awards weekend on Wednesday … my Hgb should be up in the 11 range and I will have strength to do it … but will still wheelchair in the airports … Then in early January we are doing the same routine before flying (first class) to Maui for 12 days … it is a pain in the butt, but I refuse to totally give in to this as long as I have the strength … also, my current bad problem is very low platelets and serious bruising … so platelet transfusions are in order too … we have the names of Drs in both NYC and Maui … hope this helps a bit … good luck …
JerryMemberTo everyone …
First, to KWJ, I sincerely hope that your father does well with his SCT; he is going to one of the pre-eminent places in the world for his treatment. Good luck !
Second, I would like to try one more time to clarify what my concerns are on this forum. But, you must realize also that the words that have been used to describe me and my opinions are difficult for me when my intentions are for clarity. I have NEVER used vulgarity on this forum. I have tried to be respectful until I got so frustrated that I probably did cross the line a bit. For that, I apologize. But, I have been called a jackass, told that my hostility is distasteful, that I have shown mean-spiritedness and that no one has to be a “daddy” to protect us from the “big bad alternative boogie man.”
My sole goal has been to try to protect, yes protect, those who are new to the forum and scared to death. They are searching for answers and will frequently grab at straws because of that fear. Those “in the know” must provide them with useful information. The perfect example is Neil who has a marvelous way of suggesting methods for people to try without telling them exactly how to do it.
Because of the new people on this forum who are scared and desperate, they need facts and expert help, not just someone who talks like an expert, and this is not directed at Patti in particular, some of the advice she gives is great, but it is still just an opinion of what works, not based on scientific fact. Just recently on another post, she listed a ton of vitamins and supplements to give to someone with a headache. She gave the actual amounts of each substance to be used. This is my issue with her. That is, in my opinion, way too close to practicing medicine. Instead of that, I would have preferred to have Patti refer the person to the source and let the person make their own decision.
Even though Patti has recently changed her forum signature, she told me that she could not in good conscience tell people to see their own conventional doctor because she doesn’t believe in them. Yet, she and her MIL use them for things that Dr. Kou cannot do.
I am sorry if I have offended any of you, but I have received enough e-mails that I know some of you agree with me. I have said it before, and I will say it one more time, I object when ANYONE passes along dosage information. Natural can be as dangerous as prescribed drugs. I ask you this … what if any of us suggested that a person go on-line and buy some Valium for nerves, Percocet for pain and Vidaza for MDS and take 2 a day for a month. Would that be responsible? Or would it make more sense to say, “ask your doctor about Valium, Percocet and Vidaza because they work for me”? (Example only!) I think it is obvious.
Good grief … I hope this ends this … and I hope you all have a very happy holiday season … be thankful that we are all still here …
Jerry
MemberLucy …
Something that usually works for me is to take two Tylenol (I have been told to use it) and go into a darkened room with two ice bags … one under the back of my neck and the other over my forehead and eyes … then, try to go to sleep or take deep breaths and relax as much as possible …
Also, there are docs out there who specialize in headaches and there are new medicines which give relief from most types of headaches … I would certainly get a referral to one and find out exactly what you are dealing with … good luck
Jerry
MemberWell said Chris … According to one of the most prolific contributors to this forum, the eminent Dr. Kou cannot show us any successes here in the US … all of his “cured” patients are in China … how convenient … it was said recently that staying on Prednisone long term has bad side effects … maybe so, but I bet John in gr wishes he was still on it … my fears about this forum are starting to be realized …
Jerry
MemberHow could that advice possibly help anyone ??? You say some Chinese medicine salves were used to heal up the sweets sores and that worked very well for healing them and then you say he had not been able to heal the sweets. You also say that Prednisone is the normal treatment. Do you know why they did not give it to her grandfather?? Me neither.
BE CAREFUL PATTI THAT YOU DON’T CONVINCE THIS LADY THAT HER GRANDFATHER WAS MISTREATED. YOU MIGHT BE CALLED AS A WITNESS.
Jerry
MemberJim …
Do you REALLY think Patti has it right when she says, “The left hand doesn’t have to know what the right hand is doing unless she’s doing some sort of chemo”. You said, “I talked it over with the my naturapathic, acupuncturist, herbalist, oncoligist, hemotologist, the BMT clinic doctors AND the surgeon who ultimately did the job”. Jim, there is a huge difference between what you said and what Patti said. You got it right, discussing it with ALL of your docs, she didn’t.
JerryMemberPatti ..
I really wanted to stop arguing with you over these things and you have made some improvement. But you continue to make the most incredulous statements that could really harm someone. You said, “The left hand doesn’t have to know what the right hand is doing unless she’s doing some sort of chemo”.Are you kidding me !! For you to advise any patient to do what they want (or read here) and not tell their doctor is absurd. Look at your medicine bottles … they frequently say that combining with herbs could be harmful.
You said in another post, ” Possibly hazardous? I suppose if one got lodged between the bile duct and pancreas it could cause pancreatitis which is very serious”. Yep, like sometimes fatal. In my family we consider fatal illnesses or conditions to be serious.
Patti, do you not recognize that giving advice to a foreign person who is relaying that advice to someone in Europe could be extremely dangerous due to language issues and translation problems?
Patti, I asked you to refer to how Neil gives advice. Please go back and read his posts and try to learn from him. He does it right. You don’t.Jerry
MemberKristy …
Your Mom fought the good fight and is now at peace … May God comfort you in these difficult times …
Jerry and Debbie
MemberJim …
My Cleveland Clinic docs put me on 400mg of Danazol around the first of Sept. Then, on Sept 9th I had total renal failure, not related to the Danazol and my liver counts became abnormal. They stopped the Danazol to be safe because one possible side effect is liver trouble but my liver counts went back to normal. They put me back on the Danazol at 200mg a day and my liver is fine. They are thinking of raising it to 300mg if today’s blood test stays normal. The only other side effect of Danazol can be quite pleasant. just be sure to check your liver enzymes.
Jerry
MemberKireton …
Susi and I are both Buckeyes from the Columbus area. I go to Dr. Maciejewski at The Cleveland Clinic and think he is wonderful. I don’t know where you live, but that could be a choice. Relax and read all that you can about there diseases and pay no attention to the life span information that you see. Most of it is outdated and people are living much longer than ever before. Good luck …
Jerry
MemberSusi …
Whoopie!! … now, relax and enjoy the Holidays … I am very happy for you …
Jerry
PS: Got the news from the Dr’s yesterday that if nothing changes I can go to NYC for the Heisman awards in Dec and to Maui in Jan … we were worried about kidney dialysis but it looks ok for now … so, I am looking forward to the holidays too … will watch OSU (hopefully) in the national championship game from Hawaii … J
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