Confused granddaughter looking for answers

[KWJ]

shirlsgirl – I am sorry if I offended you. I deleted my words.

[TEMBO]

Dear KWJ;

You have absolutely nothing to be sorry for…. I thank you and all the others for having the boldness and determination to say what I am sure many people like me were feeling, but did not put in words to post. I too have found this forum to provide valuable information, and do not want to lose even one member over a few folk’s nonsense.

I thank everyone for sharing your personal experiences and information large or small that we all may benefit.

God Bless,
Karen

[Terri]

I Have not been on much and am so saddened by this news. I know John is in good hands with the Lord but it still leaves me with a heavy heart, my prayers go out to his family.
John I corresponded a lot when Bob was first diagnosed, he will be missed on this forum.

Has anyone heard from Tahoe

[J.claire]

Dear Caroline,
I am a newby here (only 2 weeks) and without a doubt you people are what I cling to some days, and I’m not even diagnosed with one of the more serious types. I have gotten so much help and direction and insight from this forum. I sometimes just read old posts for a whole hour to get a feeling for what people have gone through and to feel all of your strength. I never even knew words like myelodysplastic and CBC and lymphocyte or whatever until a few weeks ago. Thank you all. What you said, Caroline, was beautiful.

[Caroline]

J.claire

They are all serious types. If you have been brought here with your health concerns and you need answers, and you are afraid, then you bet….it is serious. You will always find someone on this forum who will be more than willing to share their experiences with you.

Best wishes,
Caroline

[Jerry]

To 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

[willie]

Marla and all – I agree that there is hostility exhibited in some of the posts which I do not understand. All of you are trying to find some measure of understanding of what is going on and what can be done to limit the insidiousness of this disease. We all understand that we are not doctors. My wife’s doctor(gp) had to look it up. The Sweet’s manifested itself on her arms. I don’t know what she would have done if it occured internally. Dapsone was no better than prednisone and it lowered her counts. It was explained to us that the Sweet’s was an indicator of an underlying MDS that could have started 10 or 15 years ago. The BMB confirmed the diagnosis. It is very likely that she would have quickly been in much worse shape if it had internalized. Should something like this happen to me I would want my caregiver to be exploring whatever they could to potentially help. It does no good here in this forum to continue the barbs and mean-spirited inuendo.
Willie

[Bkwits]

I wasn’t aware of Jerry using any vulgarity. I think ideas and suggestions, particularly unproven and controversial ones, should expect to be challenged. I agree that because a treatment is termed as “natural,” that it should not be assumed that it is safe. Some of us are drawn to natural or as it used to be called “homeopathic” medicine because it makes us feel more in charge. But sometimes, it achieves the opposite of what you want.

It is unfortunate that when people try to air their greivances and differences publically on this forum, that some will try to shame them by telling of their loved one’s suffering. The forum is here to support you in those times, but please don’t use it as a club. Like any group, we will have our differences. Hopefully we will learn from a free discussion from both sides

On a light note — As a favor to his mom,I took my grandson to the pediatrician. He is a Chinese doctor or a doctor who is Chinese. I had to smile a little. Take care.
Barb

[patti]

Jerry,

I want to clarify two things. What mom practices is called complimentary medicine. It is called that because it means she uses allopathic (conventional) medicine AND naturopathic medicine. By and large, I think this is a good way to go with this particular disease. For other things we would use strictly naturopathic and vice versa. We treat each situation based on the merits of what is going on. I don’t disbelieve in doctors, but in mom’s case, we are very careful because the first 3 we had were so anti- everything except chemo. They were outwardly MAD that she refused it. That type of response sort of puts a person on the defensive.

What I said to you regarding not being able, in good conscience, to recommend people talk to their doctors about natural medicine is because medical doctors *almost* never think anything natural is helpful. I think someone would receive better advice talking to a cancer naturopath. Not that someone shouldn’t talk to their doctors about anything. I didn’t say I didn’t believe in doctors. I think what I said was I don’t believe they are God as some people treat them. In a perfect world a person’s doctor would work directly with their naturopath. That is a perfect situation. And for us, right now, that is what we have. Mom’s naturopath works for the same medical system that her oncologist is. But it took us 4 doctors in this same medical system before we found one willing to work with the naturopath that the hospital specifically hired for the purpose of working with cancer patients. You’d have thought her first 3 doctors would have been thrilled to introduce us to the naturopath (since we outwardly asked).

I am excited to see Jim posting that someone is out there trying and working to make doctors understand that both of these approaches are not mutually exclusive, but can instead be mutually inclusive. I think that will be a good day for patients to have the option of both at the same time.

Just wanted to clarify our stand.

patti

[shirlsgirl]

Thank you Jerry, I know you are looking out for all of us. I appreciate your input on this forum.

You certainly are no ‘jackass’. For the greater good you have spoken out…

One thing you have shared on this forum that I remember so well, is a dosage of vitamin K that was recommended on this forum. And after you consulted with you doctor about the dosage you discovered that it would probably kill you. So when you speak up…I think it’s for the greater good.

Hang in there…I hope all of this will pass.

[Jack_dup1]

KWJ,
Just so you know, the official MDS handshake is
1. Apply hand sanitizer
2. Shake hands firmly
3. Re-apply
4. High fives optional.
Jack

[camiboxer]

From a “newbie” to this forum AND to this disease I thought I would share my own 5 cents (inflation).

When my dad was diagnosed I was devastated, then I found you. Personally, I don’t give a rats A$$ about what drugs/treatments are mentioned or if one thinks MDS patients need to visit the moon in order to find some peace. What I do care about is the fact that people who have already traveled a little farther down the path than my dad are willing to share how they got there. If someone took their meds in the evening VS. in the morning, I WANT TO KNOW! I can’t research something AND make my own informed decision if I have never heard of it before.

*Most* people are seeking not only advice and experiences but hope. If people argue or disagree, so be it. That only shows passion and passion is a great motivator. So bicker if you will it should be expected as an outlet for so much distress this terrible disease places on those living with it and others like me who have a loved one that I am trying to help.

I read this forum daily. I don’t understand about 90% of what I read but if you look at it from my perspective I have gained 10% MORE knowledge than I had the day I signed up. As with anything else. Use the knowledge you understand, research what you don’t and try to make 2+2=4.

And to the original poster of this thread. I am so very sorry for your loss. I know your grandfather will be missed but will also make a really great angel for you and the rest of your family. I wish nothing more for you and your family this holiday season than peace.

[shirlsgirl]

Jack thanks for making me smile!

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