[geebeebee]

Whew! Thankfully I’m in disagreement yet again with you, Patti….I was worried there for a minute. Don’t worry, your right-wing buddy John will come to your rescue soon, I’m sure.

Since you got on your soap box, I’ll get on mine:

Here are my responses to your two “examples”:

1. Medicare. It sure is funny how the right-wing (which I’m sure you are) rips Medicare constantly, but ask anyone nearing 65, and they can’t wait to get on Medicare. Your wonderful American healthcare system has made it virtually impossible to retire early due to healthcare costs. Review ANY serious study of world healthcare systems, and our overall healthcare system (not just Medicare) offers almost the lowest bang-for-the-buck in the world. Did you know that our death rate for babies born in the country is higher than almost every developed nation in the world? Did you know that we are the only developed nation in the world that does not ensure that healthcare is given equally, and isn’t based on how much money you have or make? Probably not; Rush Limbaugh and Bill O’Reilly don’t like to talk about that much….

Patti, I hope you’re wealthy, because if you’re not, you have been seriously played for a fool by the conservatives of this country.

Medicare, even with its problems is MUCH more efficient with the money spent than the regular healthcare system. It’s been proven. Why do doctors not like to work with Medicare patients? Because they can gouge non-Medicare patients much more! But keep believing those that say that the government can’t help….the drug companies, doctors, and insurance companies will be laughing all the way to the bank.

Since government is so poor at managing Medicare, I think you should do the right thing, and refuse it when you turn 65, and instead get your own insurance or pay it out of pocket. It would be the only smart thing to do, right?

2. Prescription Drug Program. You’re right on one thing — it’s a horrible program. You know why it’s a horrible program? Because all the anti-government Republicans running our country are so bought-and-sold by the big drug companies that they gave them the farm in the deal. Don’t even try to blame that on the liberals. It is a Dubya/Republican plan through and through — signed, sealed and delivered by the man himself.

I’ll go ahead and throw your own words at you regarding this program: We get what we deserve as a country when people behave (or vote) like this.

You’re right, Patti. When people like you support the horrible status quo of not covering everyone in the country, letting drug companies, insurance companies, hospitals, and doctors decide how much we pay for our healthcare, that’s what we get. Thanks for continuing to support the worst-performing, and most unfair, healthcare system in the world. Congratulations!

Like most of your type, though, you will continue to rail against facts and figures with generalizations about how government can’t run anything (of course, with no evidence, unlike what Jody provided). But, hey, that’s the right-wing way — yell out mistruths long enough, and the masses will pick up on it.

I do think the tide is turning against your opinions, as more and more people without healthcare, and even those that do have it see double-digit raises, realize they’ve been duped by all of the scare-talk that you employ. But, as more and more evidence like Jody gave us presents itself, all your rhetoric will be no more than that — hollow talk that doesn’t represent what is really happening in our country.

Greg

[geebeebee]

Patti, second paragraph in your first reply begins “So while I understand you’re all for transplants,”. It’s right there.

Did I misunderstand what you meant there? If I did, I do apologize, but it seemed like you were saying I was really pushing the transplant, when I clearly am not, or certainly not intending to.

[geebeebee]

Pierre, I’ll leave one more response, because I’m going to have to declare myself done after reading Patti’s response…both John and Patti have offended Marsha and myself before on posts ripping the SCT, and questioning the logic of getting one.

First, as I’ve stated every time, opposed to what Patti said, I’m not “all for transplants”. In fact, unlike Patti and John, I’ve gone out of my way to not make a recommendation one way or another, as every situation isn’t black or white, as they seem to think. I would have given anything for my Mom not to have to have had it. And I would challenge Patti and John to name all the people who have had SCTs that haven’t made it….I really can’t think of more than two or three, and I’ve been on the board for almost two years. I don’t want to argue about this, I really don’t, but I’m not sure these comments are even correct. Anyone who had been on this board for any amount of time knows that we have tragedies all the time, and most are from people who have not had SCTs. I’m not saying they should have had them, but to talk to these guys, you would think that SCT is the cause of death for more people than MDS.

I’m not even saying there aren’t natural remedies that work, but when MDS is spiraling downward, I don’t believe there is enough evidence to warrant putting it all in nature’s hands…at this point in time. It may happen someday, but there isn’t an absolute that I know of.

Patti, I’m glad you and John are doing well, and I hope it continues. But to tell someone that they really shouldn’t do it, I think, is irresponsible, and has never been the tone of this board. It is for support and sharing information, not telling someone they would be nuts to go a certain way.

I’m signing off on this discussion, but don’t hesitate to write to my e-mail, Pierre, or anyone else for that matter, if I can give you any information I have that may help.

Take care,

Greg

[geebeebee]

Pierre, I’m not saying that anyone’s opinion is better than another’s (and I didn’t even really offer an opinion), but I would take with a grain of salt, frankly, John’s opinion. In the past, John has, nearly to the point of ridicule, criticized those that went with the SCT, even though he is not in dire straits like many others on the board, including your mother and mine.

The fact of the matter is there is a humongous range of severity with MDS…some types, as Neil has proven, allow you some room for comfort, provided you take good care of yourself and are well-educated about it, as Neil is. Others, especially secondary MDS, don’t provide that level of comfort. This board has many people who were given a year to live, though many times by a less-than-knowledgeable doctor, looking at old survival data. Those with the least-severe types of MDS tend to have much much more than one year to live, but those with severe secondary MDS do not. Just as John points to those that have “beat the odds” I think he tends to forget those who had more severe versions of MDS that, unfortunately, passed away all too quickly.

In addition, I have no criticisms of anyone’s religion, but I don’t buy that God somehow is taking care of some, and leaving others behind. If you knew my Mom, you would know that that isn’t the case. I think your religion can be very important in fighting this or any illness, but, personally, I know there are wonderful people on this board that have passed away way too soon, and I don’t think it was because God wasn’t taking care of them, while keeping others alive.

I think John has been very fortunate, and I really do hope his fortune, and everyone’s fortune who is successful with this disease, continues. But John’s opinions on the SCT aren’t based on real evidence that I’ve seen, and based purely on the fact that he has been fortunate and others haven’t. Marsha is a woman who had her SCT the exact same month as my Mom, and she is doing well. Jimbob has had great success with his. Yes, my Mom and others did not, but let’s face it, she wouldn’t have lasted much longer, if any, without it — the facts of her case just didn’t support it. Her white cells were zero and her platelets were 4 the day she went to the hospital to get the procedure done.

Best wishes to you and your mother, Pierre, and to everyone else battling this disease.

Greg

[geebeebee]

Pierre, Mom’s doctors had not found a lot of successful cases of the “mini” treating MDS, specifically (I’m sure AML is different). The “midi” solution did provide, statistically, a better success rate while at the same time was an easier regimen (no radiation). I believe the goal with a mini is for the new cells to overtake the old ones, while with a midi the goal was to extinguish the old cells and give the new ones free reign to work.

I did manage to find the link to the “midi” one below — Mom’s regimen was slightly different — they replaced the FBC with the ATG, I believe, but very similar otherwise. That put her in remission, and then they did the SCT immediately afterwards.

http://www.bloodjournal.org/cgi/content/abstract/104/6/1616

I want to say that Mom’s blasts were around 15% when she had the procedure done, but that had risen from 3-5% in maybe two months.

I do know that she had a pretty extensive set of drugs to prevent GVHD post-SCT, but I sure don’t remember them. I do seem to remember that they tapered them off after maybe two or three months, but I’m pretty hazy on that.

The breast cancer thing was a terrible blow…the way I understood it was (and I could be completely off on this, so I would definitely ask your mother’s doctors about this) that if there were any breast cancer cells at all in the body, and they survived the SCT chemo, then they could have a field day and a great environment to grow, but I don’t think that the doctors felt the breast cancer cells would necessarily reappear because of Mom’s deteriorated immune system. Now, how those damn things survived after five years and massive pre-SCT chemo (if that indeed was the case), I sure don’t know….this would be something to investigate more. I really don’t think this ended up causing my Mom’s downfall directly, but the mental anguish, the hit it took on her energy (from the mastectomy surgery), and just the general “what bad is going to happen next?” attitude it gave all of us was pretty demoralizing.

From what I know about Parkinson’s, I too would be surprised if that would pass on. Mom had PD for about two years, and it had gotten to the point where it was more than a mild inconvenience before the SCT. So, like you mentioned, it is probably the last thing you should worry about. Worst case, if she does get it, it will take its time to cause real problems, and treatment options and discoveries of PD are getting better by the day, where hopefully it will be no more than a minor inconvenience in the future.

I hope I answered at least a few of your questions successfully. I have posted very rarely, but my Mom was a very forward-thinking person, and she always felt, I think, that even if her SCT didn’t work, then maybe the study of it (her SCT was technically a trial) would allow those after her to have success with it. So, it actually makes me feel good to share her story, as painful as parts of it is.

Let me know if I can give you any information at any time.

Greg

[geebeebee]

Hi Pierre,

I’m sorry for your Mother’s problems — I unfortunately have been there and empathize with you greatly. I just happened to take a look at the board today and can offer you what my Mom chose and went through with an SCT. As anyone will say, there are tons of mitigating circumstances, and this is not meant to be advice one way or the other, and I’m definitely not an expert on the subject.

My Mom was nearly 65 when diagnosed with secondary MDS from breast cancer five years earlier. The MDS was very aggressive, moving quickly, and her younger brother was a perfect match, so she decided to do an SCT. The one they chose for her was called a “midi” transplant, designed for someone her age. Her doctors said it was right between a full- and a mini-transplant, insofar as strength of the regimen goes.

Mom had a horrible start, as the rabbit ATG serum they gave her to induce remission caused her liver to shut down and her temperature to spike to 103, and she was in ICU for a few days. They managed to get it under control and administered the SCT on schedule.

It was a rough recovery for Mom, and the fact that she had Parkinson’s did not help her weakness and mobility. However, at I believe about two months out, we were astounded when we learned that her blood numbers were absolutely perfect…not a single one out of range. She was feeling pretty decent for a few weeks, walking in the park, seeing the grandkids, etc.

Unfortunately, at about +3-4 months, all sorts of problems came up. First, she had a nasty bout of graft-vs-host disease (GVHD) that forced her to take heavy doses of prednisone to ward off. That was a horrible blow to her, as prednisone tends to reduce your legs to jelly anyway, and her Parkinson’s, combined with that, really got her down, as she lost most of her mobility. Then, she had an enormous life-threatening blood clot in her lung, that, after a long stay in the hospital, they were able to clear up.

At about +5 months, it was determined that she had a recurrence of breast cancer. A mastectomy was done to prevent it from metasticizing (sp?), and it was another huge setback in terms of her mental outlook and general health. Amazingly enough, her numbers were still OK at this point.

All of these issues kind of steamrolled her, I think, and the final blow was that she came down with the worst form of GVHD in the stomach. Mom probably wouldn’t have been able to withstand the prednisone again in her frail condition, and, with her wishes, it was decided to give up the fight at that point. We were, of course, devastated, but very proud of the way she battled through all of these issues. Her doctor said she went through what three of his “normal” patients went through simultaneously.

The rollercoaster ride was pretty brutal, no doubt about it, as there was absolute joy and amazement as to how well it was working, combined with the lows of the horrendous circumstances of other issues hitting her and eventually taking her life.

Now, there are many things different between your mother’s situation and my mother’s. First, your mother is already in remission, so that’s good. Second, you’re talking about a mini-transplant, which, if I remember correctly, minimizes the GVHD affect (or maybe even eliminates it?), which is also good. Thirdly, I don’t know, but does your mother have any other major issues? I really think my mother’s Parkinson’s had a bigger negative affect than we thought it would have, even if it affected her more mentally than physically…it just seemed to be one more thing to make her miserable, and I do feel that a good attitude is vital, because there is a lot of battling to do on this procedure.

I did have another question, but I’m not nearly up on this as I used to be — are there other options since your mother has the 5q-chromosome issue? It seemed that there were some promising options for that, but maybe those are out after it has moved to AML? Hopefully others can answer that, or maybe it’s already been answered to you by her doctors.

Overall, my mother really didn’t have a choice, in my mind, but to do the SCT if she wanted any chance of long-term survival. Her numbers were absolutely spiraling down (in only two months her numbers went from slightly low to disastrous), and it was going to get ugly quick. Even though the outcome was obviously not as we had hoped, I think she made the right decision to give it a shot. The best part of it, I think, for her, was that, in her mind, she felt she had actual hope of beating it, which no other alternatives offered at that time. I don’t think that can be overstated.

Like I said earlier, I’m really not trying to steer you one way or another, but hopefully my Mom’s story can be of some help. As you know all too well, it is a huge decision that only your mother, your family, and doctors can come up with. I hope that the SCT will be improved and someday perfected to minimize the risks that are involved at this time. Unfortunately, people need it now.

Don’t hesitate to write if you have any more questions. I wish your mother and you the best, and will continue to hope she beats this awful disease.

Sincerely,

Greg

[geebeebee]

Andrzej,

I am both elated to see that your Dad was doing so well, and also concerned over the developments. I remember it is sometimes normal for SCT patients to have erratic numbers from time to time…here’s hoping that’s just the case.

Please keep in touch and I’ll be rooting for your Dad.

Greg

[geebeebee]

Esme, my deepest condolences to you and your family during this difficult time.

Greg

[geebeebee]

Eddie, I’m sorry for your family’s loss. I know you all fought a long and hard fight. All my best wishes,

Greg

[geebeebee]

Marie, I’m so sorry for your losses. I hope your memories will sustain your spirit.

Greg

[geebeebee]

Carrie,

I’m sorry for your loss, but it’s comforting to know your Dad is at peace now, with no more worries about this horrible disease.

Take care of yourself, and I’ll be thinking of you and your family in the days to come.

Greg

[geebeebee]

Carrie, I’m so sorry to hear the news. Take comfort in the fact that he will be very comfortable and surrounded by family and friends.

My thoughts and prayers are with you,

Greg

[geebeebee]

My thoughts are with Bill’s family.

Greg

[geebeebee]

Don, I’m so sorry for your loss. You’ll be in our thoughts,

Greg

[geebeebee]

Nicole, I’m sorry for your loss. Our thoughts are with you and your family.

Take care,

Greg

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