Mini vs. full transplant? Decision???

[Lori Patrick]

I went to my transplant doctor who is in charge of my hospital's clinical trial of the non-myeoblative (I think also called "mini") transplants. I am healthy enough, had no prior problems, age appropriate to have the full transplant, which at my hospital requires total body radiation over 4 days and then 2 days of strong chemo. My doc tells me that the "mini" and the "full" transplants are equal in area of relapse vs. success.

I am currently waiting to see if our insurance will cover the non-myeoblative method. Do any of you have any information on the two that you want to toss out for me to consider? Thank you! I have to make a decision soon -- like Monday so I can get this ball moving!!!! Thanks Lori

[cheri]

Hi Lori
I am by no means a transplant expert or even fully informed on all fronts.
But your posts seems to imply that you feel really rushed in making your decision. If relapse risks are equal, which offers less side effects...

When approached about a transplant, I heard "4 days full body radiation" and that stopped me in my tracks...FOUR DAYS! That can't be good for you! They sheild us with a lead apron for a dental xray! And one cause of leukemia is radiation. Have they given you info on long term effects? I heard something about my eyes/cataracts...and they were pressuring me --heavily. I was in no physical shape at that time to recover from a headcold, much last a BMT.

I have learned that some hospitals use chemo instead of radiation; doctors are bound by their hospital protocols...have you gotten a second opinion, from another doctor at another facility? Exhausted all other treatment options?
Hopefully, the well informed folks on this website can give you further information.
I wish you the best and hope you feel comfortable with whatever decision you make....Cheri

[Mary4Mike]

Lori,
Did you read my post in response to the thread that you started yesterday titled non-myeloablative transplant? I totally agree that if you don't have to have radiation.....DON'T!! If you must, that is different. If the outcome is the same for mini or full, and the side effects of pretreatment are much milder with a mini, I would really take that into consideration. You have been blessed with a perfect, related donor. Take all these things into consideration. I feel for you that this is turning into such a rushed decision. I would think that insurance would prefer mini, especially since there would be no radiation expense. I don't understand the thought that mini is a clinical trial. They have been doing them for quite awhile. Perhaps it is the drugs they will use for pretreatment that is a trial.

We are all here for you in thought and prayer. The Lord will guide you.

Mary

[Lori Patrick]

Mary, I did received your post. I think i replied??? I wanted to see what everyone else/anyone else said. I am learning that each hospital has their standard. I am meeting with the Doctor again tomorrow. I'm not so concerned that it is a "rushed" decision, I just want all the facts and alternatives to be clear to me. I am having the transplant at this hospital (Indiana University Simon Cancer Center). I am assuming, will know for sure tomorrow, that IU uses the radiation procedure as a standard (head Doc is pro radiation) and my doc is trying to get enough in the "mini" - and until they have enough performed they are in trial??? I don't know yet! I will find out!

I appreciate your comments Cheri and Mary. I am in remission now and want to have this done asap before it returns!

By the way, my husband and I spent 2 hours with the Doctor already! AND 13 tubes of blood was taken! lol woohoo. Lori

[Lisa Z]

Hi Lori-

Having to make a choice is one of the hardest things with these diseases. I'm sure whatever you decide will be the right choice for you..... but, I agree w/what others have said... some hospitals have different protocols than others. Some do stem cell transplant, others do bone marrow. Some offer mini's and some don't., Some trials are specifically for one or the other. Personally, I've always been concerned about TBI. Radiation is know to cause secondary cancers. If the outcomes, percentage wise, are about the same, I'd go with the one that has less side effects, and that would be the mini. But, I am a survivor, not a doctor, and everyone is different and your doctor may have reason to push one over the other.

Best of luck to you. Keep us posted....

[Greg H]

Lori,

Absolutely every presentation I've watched, every webinar I have reviewed, and everything I have read on full-intensity vs. reduced intensity stem cell transplant has said the same thing: It's a tradeoff between transplant -related mortality and relapse. "Transplant-related mortality" is doctor-speak for "the transplant kills you." (I'm not positive, but I think this would include any reaction to or inability to withstand the drugs or radiation, as well as acute GVHD occurring within a few months of transplant.)

With a full-intensity transplant, the patient is more likely to be killed by the transplant process, but far less likely the relapse. With a reduced intensity transplant, the patient is far less likely to be killed by the transplant but more likely to relapse.

Almost everyone uses the same study -- and even the same graphs -- in their presentation to demonstrate this, from a 2006 European study published in the journal Blood, that pulled together statistics on nearly 850 patients.

I'll try to provide some more details on the findings of that study later today if I can steal a little time from work.

But all this makes me wonder if what your doc was saying is not that the risk of relapse is the same with a full-intensity vs reduced intensity transplant but rather that the overall chance of cure/risk of death work out being the same either way. That's what the 2006 study demonstrated.

Of course, you are an individual, not a statistic, so it's better to understand the statistics and then understand why you have a better than average chance of a successful transplant.

More to come . . . .

Take Care,

Greg




Here are the graphs:

13.SCT Comparison Study by hankins.greg, on Flickr

Just looking at the over-50 What the graph says is that, over a three-year period, the chance of "NRM" -- Non-Relapse Mortality -- is 57% with

[Flamingo Jim]

I have read the criteria for doing "reduced intensity conditioning" vs "high dose chemo" more had to do with initial health of patient, age, and prior treatments. For example, a second transplant is more likely to be RIC, I think. I was not even offered the option of RIC, since I was younger and otherwise healthy, and I never had any radiation. After having gone through the high dose treatment, I can say it was uncomfortable but not overwhelming and even if I was 10 or 15 years older, I still think I could go through it again if I had too. Now this was my reaction, everybody is different of course. I was in similar situation as Lori as I had a perfect sibling match and right now going into day 80+ I have not had any GVHD or adverse side effects

Lori, you may benefit from a second opinion at another institution as someone else stated but sometimes having too much information makes decisions even harder

[Laura]

I was not given an option to do a mini transplant. I was given a choice to do ATG/Cytoxan/Radiation/Prograf or Campath/Cytoxan/Radiation/Prograf. I received one day of radiation since my donor was 10/10. It was two days for 9/10. I have many issues from the radiation. I am only 26 and wonder what other issues will pop up later. But I also know that I had no choice. I guess I could have went some place else. But it was either transplant or such severe counts I probably would have died from an infection.
Laura

[Lori Patrick]

The latest on me... I've had all my pre-tests. The clinical trial for the mini is like this. They cannot give me a mini because I am TOO YOUNG.... unless I participate in a clinical trial where they are using a drug that has been around a long time at a certain point after my transplant to see if it helps prevent some of the GVHD problems. AND I was 1 point below what they require in the pulminary diffusion test to be a shoe in. So they are having their Review Board determine if they should let me in anyway. Then, they have to go to the insurance for their approval. Much clearer now.

As for radiation, I told them I REALLY don't want radiation. They said they have another standard radiation free protocol that uses high chemo instead. woo hoo.... or not. I have signed the release for the clinical trial and the standard chemo so I am leaving it to God. I do have to find out my echocardiogram results too. I have palpitations frequently -- stress? We shall see if they affected the test. The technician said they would not.

I'm tentatively scheduled for next Monday, but that depends on the insurance timeliness after the board review which they said would not take long. (Sounds like it would take a while to get 11 board members to review it!) If I go the high chemo route I will likely be ill.... yay. Seems odd that I feel wonderful right now and in a few days I won't! Amazing what the medical field can do.

I'll let you know what the scoop is! Oh I have to go in Thursday morning to have a CBC so they can make sure nothing (blasts) show up. Until then, I am trying to relax and leave it to God. That's hard to do sometimes....!

Thank you all for your input. It is valued. Jim, you are right.... too much is overwhelming. I feel good about the two options now and really have no preference. ahhhhhhhhhhhhhhhhhhhh (sigh of relief). OH, they did say I will get my stem cells from my brother "fresh". He will be right down the hall giving them and they will come directly to me. Isn't that amazing? smiles Hugs and Blessings to all of you. Lori

[squirrellypoo]

Originally Posted by Lori Patrick

The latest on me... I've had all my pre-tests. The clinical trial for the mini is like this. They cannot give me a mini because I am TOO YOUNG.... unless I participate in a clinical trial where they are using a drug that has been around a long time at a certain point after my transplant to see if it helps prevent some of the GVHD problems.

Eh? There must be more to this "clinical trial" than age and RIC, because I was barely 30 when I had my mini-transplant last year, and there was no question about me getting it, and it was no trial.

The mini transplant was PERFECT for me because my hypo-MDS meant my marrow was pretty much entirely devoid of cells before the transplant, so they hardly needed any chemo to knock out what was left. So even though I was young and (before I got ill) very healthy, I just got reduced doses of chemo and no radiation. I wasn't sick at all (no nausea, no vomiting, nothing), and I didn't lose any weight (grrr). My donor was a 9/10 match, too.

Like someone else mentioned in the other thread, I've been pretty much the poster child for transplants at Kings, too. The doctors are absolutely delighted and my marrow and cells have been 100% donor since the first post-transplant BMB. And I've been told flat-out by a consultant that there's pretty much zero chance of my bone marrow problems coming back.

So just keep in mind that RIC is not just for the old, frail, and weak! It can be a great option for the young and fit, too.

[Lori Patrick]

There is more to it - re read about the drug they use on a certain day during the process. That's the trial portion. My hospital does not do RIC's for those under 58.

Lori

[squirrellypoo]

Ahh I see - do you know what the drug under trial is? It'd be interesting to see if anyone here has had it...

[Lori Patrick]

The drug is Basiliximab.

[Greg H]

Lori,

That's very interesting. It seems like lots of the centers are trying different post-transplant drugs -- sometimes old ones -- to see what they can do about GVHD. Karen (Mausmish on this forum), who just did an STC at Johns Hopkins, had cytoxan afterwards in a clinical trial aimed at reducing GVHD.

One way to think about it is, if you wind up in the trial, the data you provide could help folks down the road.

Good luck!

Greg

[Flamingo Jim]

Interestingly, I am going on a post-transplant clinical trial to see if Decitabine given in six week cycles for up to 8 cycles will prevent relapse of MDS and reduce/eliminate GVHD issues. I have not had any GVHD issues so far and I am up to day 83.

So I guess you can say there are many treatments and clinical trials out there and each center might have a little different protocol. You will probably never be able to say "this is the right treatment" because things are ever changing. In the end, they all may be just as good.

I guess you could take all the major cancer centers and graph the survival rates by treatment type and get some idea of which is better. But even that has so many variables I am not sure in the end you could get an accurate picture

[Lori Patrick]

At this point I am so tired of reading. I believe that my hospital is a competent - even great teaching hospital and my doc is very knowledgeable of MDS - has spent several years researching, teaching and treating the disease. Too much information is system overload. I am so happy that I will be getting one of the two transplant options and am deferring to my Doc to determine which one I receive!

I am scheduled to be admitted Jan 3 - receive cells Jan 10. Hopefully 2011 will be a good year!

Thank you for your comments everyone. Lori

[Lori Patrick]

Happy New Year Everyone!

Good news: the hospital has total approval AND the insurance approved me to receive the non-myeloblative treatment (also known as the mini transplant). I think last posting I told you I was to be admitted yesterday, however it was changed to today. We go in at 8:00 to get sedated and have the Central Line inserted. Then I will be transported to my room. There I will receive pain medication for the discomfort from the central line. The docs will come in to talk to us and sometime in the afternoon I will receive my first dose of chemo. It will run 2 hours tomorrow and Wednesday. The next 5 days I will receive chemo for 30 minutes each day. Next Tuesday, Jan. 11, Tracy will give the stem cells and I will receive them sometime that evening.

I'll let you know more as I know. I've been feeling really great! Except for my head attire, I doubt anyone would know I am sick! It has been nice. At times I have a false sense of being healthy,,, but I know I am not and in a matter of time I will be very sick if I don't pursue this treatment.

Bring on the prayers for me and my family please. Blessings to all of you, Lori

P.S. More frequent updates will be on my caringbridge site.

[Lisa Z]

Best of luck to you Lori!

[cathybee1]

Here come some prayers!

[Neil Cuadra]

Best of luck, Lori. I'm glad you're feeling good so far. Onward to the cure!

[mausmish]

Best oF luck Lori!

[squirrellypoo]

Hang in there, Lori! Let us know how things are going when you feel up to it.

[Lori Patrick]

Day +1 and all is WELL!!! It was so touching to receive the stem cells yesterday with my brother sitting right beside me. I don't feel any different right now - no low voice, no boy parts sprouting (lol). I am wiped out from hot flashes that came on with a vengenance last week - but I'm receiving medicines for them that are certainly keeping them tolerable. My counts are going down and you know what that means,,, my body is slowing down too!

The hospital's wifi has been messed up so that is why I have not updated for a while. My daughter or my husband update my health status on Caringbridge.org under loripatrick.

Hugs to all, God is GREAT and I give him all of the praise. Lori

[Neil Cuadra]

Lori,

Thanks for the good news. Keep feeling good as long as possible!

A big cheer and pat on the back for your brother!!

[susansr]

Lori: Good luck with the process!! I thank you for sharing your story. Actually, I thank everyone that participates here. We all learn so much.

You're so lucky your brother could donate. Best wishes to both of you.