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Scot Vs. Asist & Md Lack Of Answers


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#1 mimi

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Posted 30 December 2006 - 09:51 AM

Hello

I have finished the screening for the SCOT trial and after MUCH thought, have gone on their "decline" list. Thankfully, my MD-who is a participating SCOT MD is respecting my decision. I talked to Dr. Lawton, a world-renown radiation oncologist, and although she said she feels the amount of radiation in the SCOT trial is "safe" and minimal, and the organ shields are "perfected", she cannot guarantee I won't have complications in the future due to the radiation. I am just not willing to take the risk at this point in my disease. If it is found out that radiation is THE answer, I can have it at a later date.

I am now in the screening phase for the ASIST trial at Northwestern. I hope to start their study sometime in January.

In my process of discovery, I have talked to 5 "experts" in the field and they have all basically told me that the decision is MINE. NONE of them would give me anything further than information and options. NONE of them gave me the same answer. I always ask--if the studies weren't here, what would you be suggesting for treatment. The answers I have recieved have varied from "watching me" to "cytoxan" to "cellcept". They all say it depends on how aggressive I want to be.

One rheumatologist at Northwestern thinks these studies are the way to go, while the other one is more reluctant to reccomend them-saying they are so experimental.

It is VERY difficult to have such a decision resting on my shoulders. I feel like I have 4 choices and if I don't make the right one, I die. I also feel like I have information overload and it's time to make a decision. I have been waiting since June to start a treatment and my lungs are not getting any better. I feel like I have taken the "wait and see" approach and it is time.

Unfortunately, this disease is such an unknown and the outcomes of ANY treatment are also an unknown. I understand that it is SO important to participate in these studies--for the purpose of data collection and finding a "reasonable" treatment/ "cure", but I also feel like I need to be looked at as a human being and I am trying to save MY life. I think sometimes we get lost.

Since this is not a textbook disease, I think the MD's are just as confused as to the course of action. It stinks, but that is Scleroderma.

I have based most of my decisions on my repore with the doctors and my gut reaction to what they tell me. This has seemed to work for me so far--so I say keep going to MD's until you find one that tells you something that seems reasonable--something you can "live" with.

All I can say is:
Be informed.
Check this site often, even if you don't respond, this board has the best info out there for sure!
Keep EVERY piece of info. from your chart-every MD note, every test result, every lab result, every xray. (especially if you are going from MD to MD). I have a HUGE binder all organized by MD and procedures. It is very easy for me to find info instantly and that saves time at each MD visit. Plus, most MD's are highly impressed by this and therefore tend to respond better-they know you are on top of things.
Do not be intimidated by MD's.
Ask questions. Ask questions. Ask questions.
If something doesn't seem right-it isn't.
Be your own advocate.

Good luck in your quest for treatment. It is a difficult and lonely road.

Mimi

#2 Heidi

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Posted 30 December 2006 - 11:09 AM

Hi Mimi,

Thanks for the update! It sounds like you have been very thorough in seeking answers. I am sure it must be really hard when every doctor says something a little different and there is just so much unknown. Please do keep us posted as you move through the phases of becoming qualified for the ASIST trial at Northwest.

Please know that you are in my thoughts.

Warm wishes,
Heidi

#3 Sweet

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Posted 30 December 2006 - 12:58 PM

Hi Mimi - my best friends name is Mimi :)

Wow, you have done some soul searching, along with some systematic research, I'm impressed. It really is hard to know what to do isn't it? As you know we will support you in whatever you chose to do. I'll be thinking of you.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 emmie

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Posted 30 December 2006 - 05:21 PM

Mimi,

My heart goes out to you. I think you are absolutely doing what is right for you. Getting the best information you can by asking all the questions you can from the best sources out there. Processing it and then finding what it is that you can live with. None of this can be easy.

Rest assured that when all is said and done, I am sure that the correct decision for you will be made.

xoxo emmie

#5 GocartMoz

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Posted 31 December 2006 - 05:25 AM

Hi Mimi,

I am glad you are on the road to the right treatment that is right for you. As you know, I have chosen the SCOT study and have also investigated Northwestern. As such, I have been through all the same things and questions and concerns you have gone through. I think the answer is exactly what you said ... you have to go with your gut after processing all the information(however, I do agree you can reach a point of information overload). Even though my choice was SCOT, that doesn't mean SCOT is right for you. If your gut tells you Northwestern, than I truly believe you are making the 100% right decision. Both studies involve the best doctors in the country. I wish you the very best on getting the treatment you want and having a healthy 2007. I begin my translplant process mid January where they will be putting in a port and mobilizing my stem cells and then harvesting them. I return in February for the long haul(about 3 months), when the rest of the process takes place(ablation of the immune system and replacement of the stem cells). Who knows, maybe we will be on a similar time frame and can share our experiences. Best of luck.

Dave

#6 Gidget

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Posted 01 January 2007 - 09:15 AM

Mimi,
I am behind you as my Northwestern appointment is not until mid-January and I also hope to participate in the Assist trial. Maybe after this appointment, my head will stop spinning.

Here's my question -- until diagnosed with Sclero -- I was what you consider "healthy as a horse" -- EKG, Blood pressure, bloodwork all great. I could breeze through any physical. Based on your investigation, have you found out if the body bounces back from the Assist procedure?

My other question is -- one arm is cytoxan -- the other is cytoxan with stem cell transplant. According to my rheumatologist -- if there was a nuclear blast, the roaches are what typically survive. Well, according to him stem cells are like the roaches and the cytoxan is like the nuclear blast. So, if this is the case -- in both study arms the stem cells survive -- so what is the benefit of the stem cell transplant?

As you can see I have had too much information overload and have somewhat confused myself as I believed that to go through this effort it should be for the stem cell transplant and not the cytoxan study arm. But now it seems that both are very similar study arms in that no matter what your stem cells survive whether harvested or not. My impression is that there is less risk of infection in the cytoxan study arm but more benefit of skin improvement with the stem cell.

Thanks for the help.
Gidget

#7 janey

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Posted 01 January 2007 - 11:52 AM

Mimi,
It looks like you've had a lot to think about over the holiday season. It's a very hard decision, but with as much soul searching, research and doctor consults that you've done, I'm sure you'll make the choice that is the right one for you. Please keep us updated on all your screening results and what exactly you decide. You're in our thoughts.

Gidget - you ask a very good question - If the stem cells are the roaches, then why transplant them after the nuclear blast? This is definitely one to ask the experts, but after reviewing the information from the International Society of Stem Cell Research, it might be because not all stem cells are alike. Some stem cells can only form into certain tissue while others can form into all sorts of tissue, organs, etc. In the answer to "What is an adult stem cell?" it states"
There are different types of stem cells found in the bone marrow, including hematopoietic stem cells, endothelial stem cells, and mesenchymal stem cells. It has long been known that hematopoietic stem cells form blood, endothelial stem cells form the vascular system (arteries and veins), and mesenchymal stem cells form bone, cartilage, muscle, fat, and fibroblasts.
So maybe this is why a transplant is needed - to move these cells out of the marrow and into the body to form new and different tissue.

Good luck to both you with the Northwestern trials. Can't wait to hear more.
Janey Willis
ISN Support Specialist
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(Retired) ISN News Director
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International Scleroderma Network (ISN)

#8 peanut

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Posted 01 January 2007 - 01:48 PM

Hi all,
Maybe this helps, or not, but I think according to the SCOT website they remove certain cells from the stem cells then place them back into the body clean:
Your blood cell samples will undergo a process where specific types of stem cells that express a protein called CD34 are selected. Cells thought to be associated with activating scleroderma will be discarded… The cells are stored in a freezer until the time of your transplant…. The cells will be infused through your central venous
catheter over about 30 minutes.


Best of Luck.
Can't wait to hear more,

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#9 Gidget

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Posted 02 January 2007 - 03:53 AM

Janey, Peanut,
Thanks for the help in answering my question. I will try to get confirmation from the doctors at Northwestern. Sometimes it is not the best to talk to too many doctors as I find that I can wind up stuck in a culdesac. When I saw the oncologist about IV Cytoxan, he suggested that I harvest the stem cells now -- before the cytoxan treatment as there is a slight risk that with cytoxan, stem cell production might be effected. This made logical sense until I saw my rheumatologist who told me that with cancer, stem cells are not functioning properly but with sclero, stem cells are functioning properly but something has triggered the "wrong signal" to make the excess collegan. Hence the whole nuclear blast/coch roach analogy and the reason that I don't need to harvest stem cells in advance of the cytoxan treatment. Regards. Gidget

#10 americanmike

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Posted 02 January 2007 - 08:40 PM

Let me qualify that I'm not a doctor, but I've researched this procedure quite a bit. here's how I think the whole transplant thing works

1) The patient is given Cyclophosphamide and other drugs in low doses to stimulate the stem cells to leave the bone marrow and move to the peripheral blood.

2) The stem cells are harvested from the peripheral blood

3) The patient is given much larger doses of Cyclophosphamide and other chemo agents to "ablate" destroy the immune cells (not the stem cells).

4) Stem cells are reinfused to the patients blood. These stem cells migrate back to the bone marrow where they (along with the stem cells that remained in the bone marrow and lived through the chemo) begin the process of rebuilding a new immune system.

Here's some important points to understand:

The whole point of the procedure is to destroy the diseased immune system T cell, B cells, phagocytes, lymphocytes, etc... Not the stem cells.

Stem cells are the formative growth cells that will eventually grow into mature T cells, B cells, after the transplant. The new immune system has a good chance of being healthy and not autoimmune.

Stem cells are harvested and infused for the sole purpose of helping the body build a new immune system faster. They are not really the main point of a "Stem cell transplant" In fact, some hospitals like John's Hopkins do the whole procedure without harvesting stem cells and infusing them. Just the highdose chemo (which is the main point).

Why bother with the Stem cells then? Because the infusion helps the body produce a new immune system faster. The added stem cells speed up the process and guarantee that the body will be able to get back to full immunity, ASAP.


Assist vs. Scot is essentially the question of how big a blast is best. Scot includes radiation, Assist says chemo is enough to destroy the diseased immune system. The answer is not in yet. Both have advantages and disadvantages.

The fact that everyone is being proactive and these studies are taking place puts a big smile on my face. Bless everyone and may you all have great results.

Michael in Florida

#11 Gidget

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Posted 03 January 2007 - 10:03 AM

Michael,
Thank you for your clear response. It was extremely helpful. Regards, Gidget

#12 americanmike

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Posted 03 January 2007 - 07:13 PM

NO Problem Giget--

One more thing...

The other not so obvious difference between the Cytoxan arm vs. the Transplant arm is essentially the dosage. In the stem cell transplant arm the immune system is destroyed "brought down to 0" so to speak. It's a nuclear blast as you have said. The cytoxan dosage is many fold higher than the cytoxan arm.

In the cytoxan arm, ongoing chemo supresses the immune system, but doesn't completely ablate it. More like dropping a few bombs every week for a longer period of time.


Michael in Florida

#13 Gidget

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Posted 04 January 2007 - 05:58 AM

Michael,
Thank you again for the clarification. I am finding a hard time getting my arm around the differences between the two arms and your posting has been extremely helpful. My rheumatologist spins me round and round when I ask him which arm is "better". The clearest answer I can seem to get from him is "this is why there is a clinical study -- to see which treatment is better". Again, thank you for all your help. My appointment is next week at Northwestern to hopefully qualify for the Assist. Additinally, I have an appointment with Johns Hopkins next week -- maybe, Dr. W. will propose the cytoxan arm treatment. In any event, I will make my decision soon and will hope for the best. Regards Gidget.