Has anyone heard about this Blood Tonic? And what about AA prognosis?

[paulaespada]

Hi everyone!


My husband is now passing through one more difficult week.

He is very tired, no appetite and maybe begin to feel depressive.

Today he stated "as better blood accounts be, I feel more bad". Which is atrange for me.

Today he tells that his arms are so heavy that he doesn't want to move.
If I allow, he'd be close in our bedroom, with closed windows, just in dark.

I never thought about it before but now I wonder what prognosis might be. I asked here before but for some reason I don't see my post so I got no answers.

So, this is one of my questions today:

1) What is prognosis? Does my husband has possibilities of live for many years?
(Maybe this is not an easy question but if I get some answers I'd be thankful - I search and didn't find consistent answers.

Also, I found what they call a Blood Tonic to AA. The link is the follow and your opinion is very important, as well.

Today he tells that his arms are so heavy that he doesn't want to move.
If I allow, he'd be close in our bedroom, with closed windows, just in dark.

http://www.hls-herbs.com/product/Blood-Tonic.html

I'd love to see my husband function in intellectual and not being so tired.

For other side, We can't get answer from his doctors. They don't explain nothing and if there weren't for the forums I found in cyberspace, I'd be lost.

Thank you all!

[Neil Cuadra]

Hi Paula.

I'm sorry to hear that Jorge is having a difficult time. I'm sure that some days are better than others and it's hard to keep your spirits up on the bad days. It might help to notice when there are little improvements from day to day. Anytime a day is better than the previous day, it can give you more optimism.

As for so many AA cases, the prognosis is unknown. We are each unique, and we each respond to treatment differently. That's why you see inconsistent answers when you search. Yes, Jorge may live for many many years, but nobody can promise you that. That's why we couldn't really answer the prognosis question in your Back Home, some questions thread.

How did you find the website selling blood tonic? I would be hesitant to order any treatment unless it was recommended by a medical group I trust, and approved by my own doctor.

I hope you will find a way to get answers to your questions when you go to the hematologist. It's so important. Doctors should not leave you with unanswered questions at your appointments. They should take the time to talk to you or let you talk to someone else at the treatment center who can help get you answers and information.

[paulaespada]

Originally Posted by Neil Cuadra

Hi Paula.

I'm sorry to hear that Jorge is having a difficult time. I'm sure that some days are better than others and it's hard to keep your spirits up on the bad days. It might help to notice when there are little improvements from day to day. Anytime a day is better than the previous day, it can give you more optimism.

As for so many AA cases, the prognosis is unknown. We are each unique, and we each respond to treatment differently. That's why you see inconsistent answers when you search. Yes, Jorge may live for many many years, but nobody can promise you that. That's why we couldn't really answer the prognosis question in your Back Home, some questions thread.

How did you find the website selling blood tonic? I would be hesitant to order any treatment unless it was recommended by a medical group I trust, and approved by my own doctor.

I hope you will find a way to get answers to your questions when you go to the hematologist. It's so important. Doctors should not leave you with unanswered questions at your appointments. They should take the time to talk to you or let you talk to someone else at the treatment center who can help get you answers and information.

Thank you very much for your answer.

You're right about doctors answering but in my country we don't have this medical culture of oppeness. And, for other side, I don't want to ask it beacuse I'm with my husband and we never talked about it. Jorge is not the kind of person who reaches information. He trust his doctors, he trust on me and he lives well knowing almost nothing.

I found that tonic when I searching in google for "AA survival".

Meanwhile I found information on shark liver oil.

Our medical doctors are too orthodox, so this is just a "no" and won't even listen to such things.

Meanwhile I was told about this study about AA prognostic after ATG. You can find it here:

http://jama.ama-assn.org/cgi/content...f68d34424a6dc3

Althought it was developed in the nineties, it have good news, so I must believe it's still better.

Again, yhank you very much for your answer.

[Neil Cuadra]

I think this page at the NMDP website is more up-to-date, and it too gives general statistics about the results of ATG treatment for AA:

http://www.marrow.org/PATIENT/Undrst...apy/index.html

In general, they report that a majority of patients respond to ATG and a majority reach survival milestones. They give several cautions about consulting your doctor when reading statistics like these.

Many generations of Americans had an attitude of "trust the doctor, don't ask questions, and don't expect answers" and many older patients still have that attitude, but things are different for the last generation or two. These days, patients often come to appointments armed with information and questions, and expect to participate in decisions about their care. The best doctors understand that this is for the better. While some doctors feel threatened, as if their expertise is being challenged, it's really an opportunity for them to share their expertise and benefit from the interactions and communication with patients.

Sometimes, even when all the facts are known, treatment choices have to be made for personal reasons instead of medical reasons, such as when you have to decide to live with a known condition or take a chance on a treatment that might help or might hurt. That can leave it up to the patient to consider quality of life and their personal goals. It's unfortunate, but sometimes these decisions are affected by practical issues over finances, insurance, ability to travel, and the proximity of the treatment center. Patients should have as much information as possible to make decisions about their treatment.

I hope the same change in attitude will come to Portugal. It varies quite a bit from doctor to doctor. If you can find any doctor more willing to talk, even just to you by telephone, that could do you a lot of good. Jorge is right to put his trust in you because you're looking for whatever information you can find to help him.

[Connie]

Originally Posted by paulaespada

My husband is now passing through one more difficult week.

He is very tired, no appetite and maybe begin to feel depressive.

Today he stated "as better blood accounts be, I feel more bad". Which is atrange for me.

Today he tells that his arms are so heavy that he doesn't want to move.
If I allow, he'd be close in our bedroom, with closed windows, just in dark.

In response to your post, I have a couple of thoughts. One is, that possibly your husband might be dealing with depression. That is very common for many. So you might want to ask his Dr. about it, and how to help your husband with it. The other is that I was told that Cyclosporine (if your husband is taking that right now) can make your arms feel heavy and tired. I didn't really have any problem with that, by one of my Dr.s kept asking me if my arms would bother me when I lift them up or anything.
Hope this helps you some.
Connie

[Lisa V]

Paula, the article in your link is very interesting and has more information than any of us can provide. Each of us only knows how we or our loved one is doing, and that is the most important thing after all.

Of course most of us do want to know what lies ahead, and the only way to get any idea of that is to read the statistics. A few things to keep in mind when reading something like that, however: first, it is a limited study. All of the conclusions made were based on a specific group of only 122 patients. A different group might produce different statistics. Second: in order to be able to cite any figures for long-term survival, patients must be followed over the course of several years, which means that by the time those survival figures are recorded they are already obsolete because medical procedures continue to evolve and hopefully, improve. How can we know the odds of someone receiving ATG surviving for another 30 or 40 years, when the procedure itself hasn't even been in use for that long? We have heard from a few people on this or other forums who had ATG at least 20 years ago and are still here, so I find that encouraging.

Another thing to keep in mind is that Aplastic Anemia is not a single homogeneous disorder, but a group of symptoms. Each case is unique and has its own peculiarities, so what is true for one person may not be true for another. Seen in this context, statistics are just a record of what has happened, not a predictor of what will happen. Of course we have to use them to determine which drug protocol is likely to be most effective, etc. but the most important factor is always your own experience.

When Ken was first diagnosed and treated I spent a lot of time reading articles and studies and looking for answers. I had to come to terms with the fact that he could die from this, and try to prepare myself for it. At some point, however, it became clear that he wasn't actually dying, but managing his illness and living his life. I choose to focus on that now. I don't ever forget, but we will cross that bridge when we get there, and we're not there yet!