Being discreet about successful ATG

[Ryan Jay]

Something that I was thinking about the other day:

Are cases of successful ATG/Cyclo treatment underreported in social circles?

It would seem that many people who achieve remission move on with their lives, (as much as they can) or may not feel comfortable telling their success story.

Personally, I would find it a bit awkward to announce a great response to ATG while others have struggled so much with treatment. On the other hand, I could see where an ATG success story would give others hope.

I think this post gives you guys an idea of my state of mind right now as I slip into the weekly check-up/transfusion/ watch and wait mode.

[Lisa V]

Ryan, I guess everyone has their own style and way of sharing or not sharing. Some people do seem to move on and not look back (or try not to). Personally, I find it a bit disconcerting to hear from people while they are undergoing treatment, and then nothing after that. It always makes me wonder if they went into remission or if they died. I'd like to know about it either way, because that helps all of us to get a better picture of what the general outlook is.

I'm so grateful to the people I found online who were able to help answer my questions when it felt like the world had turned upside down, that I want to try to do the same for others if I can. That's just me, though. My husband (who is the one with AA) doesn't feel the need to talk about it at all. He doesn't keep it a secret or anything, but he doesn't look for people to network with either. He doesn't have to-- I do that for him!

[Neil Cuadra]

Ryan,

It probably works both ways. People who have had a less-than-good experience may not want to worry others or may be too busy trying to manage their own health. People with a good experience may not want to give others false expectations or may have put it all behind them. Some people naturally share more than others. And since these are life-threatening diseases, some patients don't survive to tell us their stories.

We get a skewed view in these forums for other reasons too. It's an English-based site so we hear mostly from those in Australia, Canada, the U.K. and the U.S., with some notable exceptions. And forum members, like those who post their stories at other websites, tend to be the more proactive patients and caregivers. I tend to think they do better overall than those we never hear from.

So it's a concern, but there's not much we can do about it. It's worth reminding ourselves that personal stories can give you a first-hand look at ATG and other patient experiences but they aren't a statistical sample that you can use to predict how your own situation will turn out.

[Marlene]

I pretty much fall in line with what Lisa is saying. I was John's caregiver and did all the researching for him. But he pretty much knows about the people here and on other forums, and keeps up with the status of many through me.

I feel John is a success story but is was a long journey. And as a result, feel our experience can help others. Everyone undergoing treatment is going to run into a glitch somewhere along the line. Whether it works or not, doesn't matter. There's a period when everyone is in the watch and wait mode, or crisis, and could use some help to get through it. It may be side effects to a med, problems communicating with their healthcare team, lack of progress in recovery, etc.

So I continue to participate with hope that it helps someone. As I get further away from John's treatments, I realize that I may not have as much to contribute because so much changes and I cannot keep current with latest and greatest breakthroughs.

[Dick S]

Since first being diagnosed in 2006, I have been on a watch and wait list. Initially all three lines, or as they say "multilinial" were below normal. I have faithfully gotten a CBC every three months with a couple BMBs thrown in along the way. By "tenths" I mean at every CBC my three numbers, W, R, Hct, Hgb drop a tenth here two tenths there, but so far have not reached that so called "critical point" when they will feel compelled to do something. Word from the V.A. which I have found is also controlled by and dictated by Medicare standards they keep lowering the bar. Right now my hematacrit is at 30 and Hbg at 10. At one time I was told this was the point to start doing something/anything, but NO they now lower the standard to 29 and 9. What is frustrating is if and when I get there, what's to stop them from lowering it to 28 and 8. Do you see where I am going with this? The "tenths" drive me crazy. Am I wrong or should I just be content to be tired all the time and watch the "tenths" drop month after month and WATCH AND WAIT. Arrrggghhhhhhhhhhhh!

[evansmom]

Hi Ryan,

I echo what Neil wrote, and I feel the same way Lisa does. For me, this forum was a life line of sorts, I could come here and share my concerns about Evan, ask questions and seek support and information. My friends here gave me support when Evan showed no response to ATG and had to go on to BMT, and rejoiced with me when Evan made it through and was well again.

I never hesitated to share Evan's ups and downs here. Bone marrow failure diseases are what they are and I think fellow warriors want to know the truth, good or bad.

Hang in there Ryan, the wait and watch can be a rollercoaster but try and focus on the positives. There are successful treatment plans for AA, unlike many other incurable diseases. Be safe, but carry on living life to it's fullest. See beauty in the little things and most of all, remain hopeful. There is every reason for you to be.

[rose mcmillin]

Originally Posted by Ryan Jay

Something that I was thinking about the other day:

Are cases of successful ATG/Cyclo treatment underreported in social circles?

It would seem that many people who achieve remission move on with their lives, (as much as they can) or may not feel comfortable telling their success story.

Personally, I would find it a bit awkward to announce a great response to ATG while others have struggled so much with treatment. On the other hand, I could see where an ATG success story would give others hope.

I think this post gives you guys an idea of my state of mind right now as I slip into the weekly check-up/transfusion/ watch and wait mode.

Hi Ryan, I loved your honesty. I know for myself I would love to have the knitty gritty questions answered. I always feel on the edge. Not even knowing whats coming next or what to expect. I think its quite helpful for people to be really honest here with good and not so good results. I panic about what is the next thing to expect. I realized that not everyone reponds the same but I do think there are trends. My husbands white counts are going up (20) and his platelets down(17). Feel like I just want the truth. What happens next? What are we waiting for? What can we expect to happen next? Its so the elephant in the room that no one discusses. Hope this helps you and gets people to talk more openly. I personally would like to hear all sides good and bad so that my husband and I can have an idea about whats coming. I think my response gives you an idea about my state of mind right now also. Most Sincerely, Rose McMillin

[susansr]

Originally Posted by Ryan Jay

Something that I was thinking about the other day:

Are cases of successful ATG/Cyclo treatment underreported in social circles?

It would seem that many people who achieve remission move on with their lives, (as much as they can) or may not feel comfortable telling their success story.

Personally, I would find it a bit awkward to announce a great response to ATG while others have struggled so much with treatment. On the other hand, I could see where an ATG success story would give others hope.

I think this post gives you guys an idea of my state of mind right now as I slip into the weekly check-up/transfusion/ watch and wait mode.

Dear Ryan,

Hi. I am the lady from a Boston suburb who inquired about your feelings on Lahey.

It has been 6 months since my ATG treatment. I don't know if i'm considered in remission since I don't need transfusions anymore. The big "but" to my situation is that my numbers never rose to a good level. My platelets have leveled off at 30,000, no where near what the docs hoped. My hemoglobin doesn't remain that stable; it is now 9.4 and soon I may need a transfusion; my doc said its ok if I may need RBC's 4x/year, that is still considered not an issue. I find this most confusing; don't know how I really stand

It would be more helpful if others did continue to share their stories either way. It just helps understanding that this disease has such various outcomes to the immunosuppressive drug treatment.

Its still early for you so do not get discouraged. Other forum members shared with me (and I am grateful for their input) how their numbers continued to increase a year and a half out of treatment.

Hang in there, Susan.

[rschem]

I have been DX with saa 2008/08.was treated in Vancouver sept.2008 Ihave partially recovery on cyclosporne.My hg.is 116,pl 123,wt.6.2,nu 4.1 . I am able to live a fairly normal at these levels.Iam 63 and not considered for a bmt.So this is as good as it gets.I need @9-10 hrs sleep a night and a 1 hr nap in PM.I feel very luckey to be free of needing TX since 2008/10.One of my concerns right now is creation levels .Iam presently at 177.Have been recently cut back 2010/05 to 300 from 350mg. of cyclosporne.I expect to be cut back more in Sept.
Hope this helps.Good luck.
Robert S.

[Ryan Jay]

Maybe I'm getting ahead of myself. Talking about a success story is a problem I want to have.

I was a little bummed today about my counts today. Evey thing was way down. I needed both platelets and PRBCs, and the doctor decided to put in a PICC line with only one lumen this time.

Oh well,

I was expecting to have a down day somewhere along the line.

[evansmom]

Ryan -

Don't be alarmed about the dramatic drop of your counts. ATG is a marrow suppressor. Counts will get worse before they get better. I just wish doctors would tell us about that because it's very disconcerting when it happens.

Hang in there.

[Hawaii Bill]

Originally Posted by evansmom

Ryan -
Counts will get worse before they get better. I just wish doctors would tell us about that because it's very disconcerting when it happens.

That's exactly how it went with me. Every morning, the counts went down unless I had a transfusion the day before, and sometimes that did not seem to help much. The doc never explained all of this to me, just said I would be in the hospital a month (only one week of which he was on rotation in the hospital; one of his colleagues saw me the rest of the time-- talk about feeling abandoned!). I don't blame the doc so much, everyone is stretched thin in healthcare, but it would have been nice to know all that I know NOW way back then....

[flyguy]

Hi Folks.
I've been following this thread for a few weeks and it's hit me at a somewhat troubling time in my MAA treatment path. I was diagnosed about 2 years ago following a BMB and have undergone ATG, rituximab infusions, CSA, and Prograf. I had my most recent BMB three weeks ago and saw my hematologist last week for the results. In short he said that my present results are almost exactly where they were when I first saw him. It's now been 10 months since my ATG treatment and IST. HG is now 8.5-8.7 , Platelets in low 30,s WBC in 3's, RBC in 2's. I had problems with CSL and Procrit and am off all treatment now indefinitely. The numbers are the same on or off, but I do feel a lot better off Prograf.
BMT is not a viable option since doc says that because of my age, survival rate for first year would be 50% and quality of life no better. I feel a bit like I'm working on a high wire without a net. I wasn't any sicker after receiving news that I have made no progress, but he sort of put some big footprints in my garden of hope! I will continue to get blood drawn every 2 weeks and start transfusions if they are needed but there is no "what if" strategy and I'm not taking any medication but Acyclovir. I have a great Wellness program at my hospital and excellent oncology counselor but it's a very lonely time emotionally. I'm sure I'll adjust to it. I've always had another test or drug to try and being on indefinite watch and wait with no ongoing treatment has challenged me almost as much as the original diagnosis did. OTOH I have wonderful resources I've discovered in the last 2 years and many great friends but it's still a disquieting time right now.
Thanks for listening.
Flyguy

[Laura]

Originally Posted by flyguy

Hi Folks.
I've been following this thread for a few weeks and it's hit me at a somewhat troubling time in my MAA treatment path. I was diagnosed about 2 years ago following a BMB and have undergone ATG, rituximab infusions, CSA, and Prograf. I had my most recent BMB three weeks ago and saw my hematologist last week for the results. In short he said that my present results are almost exactly where they were when I first saw him. It's now been 10 months since my ATG treatment and IST. HG is now 8.5-8.7 , Platelets in low 30,s WBC in 3's, RBC in 2's. I had problems with CSL and Procrit and am off all treatment now indefinitely. The numbers are the same on or off, but I do feel a lot better off Prograf.
BMT is not a viable option since doc says that because of my age, survival rate for first year would be 50% and quality of life no better. I feel a bit like I'm working on a high wire without a net. I wasn't any sicker after receiving news that I have made no progress, but he sort of put some big footprints in my garden of hope! I will continue to get blood drawn every 2 weeks and start transfusions if they are needed but there is no "what if" strategy and I'm not taking any medication but Acyclovir. I have a great Wellness program at my hospital and excellent oncology counselor but it's a very lonely time emotionally. I'm sure I'll adjust to it. I've always had another test or drug to try and being on indefinite watch and wait with no ongoing treatment has challenged me almost as much as the original diagnosis did. OTOH I have wonderful resources I've discovered in the last 2 years and many great friends but it's still a disquieting time right now.
Thanks for listening.
Flyguy

Can I ask how old you are? It almost seems like you need a second opinion? Although your counts aren't horrible, you don't want to have to be getting transfusions all the time either (if it comes to that). Where are you being seen?
Laura

[Al's Wife]

Flyguy,

I know it's frustrating, but hang in there. Have you gone for a second opinion. If not, I would highly suggest it. We went to Emory for a second opinion after my husband's myelodysplasia was diagnosed, and while nothing changed, it still feels reassuring. While we have opted to stay with Georgia Cancer Specialists in Stockbridge for treatment, our doctor there confers with the Emory doctor, and we feel we are getting the best of both worlds. I'm not familiar with MAA but I wouldn't take anything for having found these forums. I have learned so much, not to mention the support.

Just wondering if you are perhaps the same Flyguy who posts on Biloxi One Board?

Take care and hope things get better for you.

Linda

[flyguy]

Originally Posted by Laura

Can I ask how old you are? It almost seems like you need a second opinion? Although your counts aren't horrible, you don't want to have to be getting transfusions all the time either (if it comes to that). Where are you being seen?
Laura

Hi Laura and Linda,
Thanks for the replies. Sorry not to have posted age- it's 69. I've always been very active and age isn't my problem except in treatment, I think. I'm being seen at Emory for primary care and Piedmont for follow up. I got a consultation with Dr. Brodsky at Johns Hopkins about a year ago so I think I'm up to snuff on options. One other suggestion from Emory was to consider a NIH clinical trial in Maryland, but the ones I looked over were using meds I'd already taken and had serious side effects with. I agree that the numbers aren't terrible but Emory gives red cells when HG is > 8.5 and I'm not far from there. I researched M D Anderson before I saw Johns Hopkins and they didn't seem to have any experts in AA, at least when I checked.
Linda, I don't post anywhere else, so I guess it's another pilot. Thanks for asking. I agree about support and information here. Whoever said that words can never hurt you didn't deal with cancer! I'll keep you posted when I get my next CBC. Thanks for your ideas and help.

Flyguy

[Laura]

When you got the second opinions where things pretty much the same as they are now? If things have changed, it might be something to consider.

You never know about the NIH...they are always changing things, so I personally would not go based on the info on the internet and would call and talk to them about a trial. If that is what you are interested in.

How do you feel with your HGB so low? Because you also want a good quality of life. If you feel you are affected even though your HGB is not less than 8.5, you could maybe talk to them about transfusing based on symptoms too.

Laura

[Lisa V]

Originally Posted by flyguy

I wasn't any sicker after receiving news that I have made no progress, but he sort of put some big footprints in my garden of hope!

I hear you, Flyguy. I read this yesterday and spent much of the day thinking about it. The role of hope can be really tricky. On the one hand, doom and gloom and moping around really doesn't help you with treatment or recovery. On the other hand, getting your hopes up only to have them come crashing down can be a lot rougher emotionally than if you hadn't let yourself dream in the first place. So, what to do? Would you rather the doctor had not given you hope? I'm just asking, because this is something that bears on our role as forum participants too.

I think if I were in your shoes this would be the point at which I'd start investigating alternative/holistic approaches. While I tend to worry about people who choose herbs and meditation in lieu of seeking more conventional medical treatment, I do believe there are lifestyle changes that can help in some cases. More to the point, once you've exhausted the other options, you've got nothing to lose, and it seems better to do something than to sit around and wait. Of course it depends on whether or not you're the type of person who is willing to make a lot of dietary and other changes to you usual routine (I know it would be next to impossible to get my husband to do that!)

Just a thought. I wish you well (if only it were that easy!)

[flyguy]

Hi Lisa and Laura and Linda,
What a coincidence with all the lovely "L" names-- Thanks for the replies. We were talking today in Mindfulness class about the same subject of unsupported hope, or gloom and doom. I think you have to be realistic without being cynical or you might not recognize progress when it comes. If you are doing well, you will have a hard time at some point, and if you are having a hard time, things will improve. You can't set your feet in concrete and expect things to stay the same. That's helped me though more than one up or down in the last two years. I've decide that some of my crisis is of my own making and interpretation. If I define "doing something" as necessary for healing, I will continue to seek treatment, even if ill advised. If I redefine treatment as monitoring blood counts and being patient, it's easier to tolerate. I'm glad my doctor had a strong enough ego to suggest backing off to see what happens. His frankness hurt my feelings but didn't change the message and I appreciate it.
Re alternative treatments, I think I'm already on board with this. My Wellness center offers many modes of complementary treatment including yoga, diet counseling, meditation, art, writing, couple's and individual therapy. I've participated in many of them almost since my diagnosis and found them to be very, very helpful.
Laura, my blood numbers have been about the same since my diagnosis 2 years ago. I think my AA has been smoldering along for years as I look back. The consultation with Johns Hopkins 1 year ago resulted in a recommendation to do nothing at that time. I returned home and, partly from frustration, agreed to undergo ATG. It seemed like a proactive step, but wasn't. In retrospect Johns Hopkins was correct, but it seemed like "something" needed to be done. I don't feel that way any more and patience is perhaps a bit more advised. When I was on PRBCs for a couple of months following ATG it had little effect on my fatigue, and I understand that's not uncommon with auto immune diseases. If you feed it red cells , it just get hungrier
Linda, I can't believe the coincidence of your husband being treated at Emory too. Sure hope they treated him well. The cancer center is a bit like a Grayhound Bus station at times but there are a lot of sharp folks there. BTW, you and your husband would qualify for free Wellness services at Piedmont Hospital if you are interested. Piedmont Fayette also has a smaller Wellness program. I can send you a link to their calendar and you would be amazed at the scope of free programs they provide for anyone touched by cancer (or AA, etc) Let me know.
Thanks again for your thoughts. It's helping me solidify my ideas and blunt my impatience.
Flyguy, AKA Ron