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rmm

Status of stem cell trials

7 posts in this topic

Hi folks,

 

I don't post here often - I think I had another user name, but I can't remember it, so I can't remember if I've filled in any information. Anyway, my mum has diffuse sclero with some serious organ issues - you name it, she's got it (pulmonary hypertension, kidney issues being treated via dialysis, usual skin and circulation issues, plus now in hospital for viral hepatitis for the past couple of weeks). We've been living with this monster for so long, it all goes into a blur what she's been on and when; she's on the usual cocktail of meds (various ACE inhibitors, Viagra, etc. etc.). She's gotten excellent care over the years from all the various specialists she's seen, but I'm kind of disappointed that no one's been her medical advocate as far as actual treatment - they treat the symptoms but I'm wondering all along if they could have been more aggressive in helping her. :(

 

I wanted to find out more about the various stem cell trials - I'm reading up on it and I'm suspecting she might not be a good candidate for any of them since she's in her 70s, but am curious as to their current success rate, and how long it will take to go from clinical trial status to actual treatment, and if there's anything that can be done for her. Last summer she survived almost 3 months in hospital (including 2 weeks in ICU) battling pneumonia - she's a fighter, and I just want some kind of hope that something more can be done to help her. :(

 

Any ideas?

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Hi RMM,

 

I'm terribly sorry your mum is having such serious problems. She does indeed sound like a fighter and lucky to have you in her corner.

 

I don't have personal experience with stem cell treatment, but I'm hoping our Forum member who do will respond to your posting. In the meantime, you might have a look at the Scleroderma Clinical Trials for some good information about various trials, both completed and open, for not only stem cell but also other treatments that are in the pipeline.

 

You might also want to contact your nearest Scleroderma Clinical Trials Consortium centre. They would likely be a good source of information for you regarding what other treatment options would be available and appropriate for your mother.

 

Best wishes to you and to your mum,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hey Darlin',

I'm so sorry to hear about your mother. With everything she is having to deal with, it's pretty obvious that she is a real fighter. Also, I'm sure the support of you and her family have made a big difference in how she been able to fight.

 

Jeannie provided you the link to our clinical trials pages. I would suggest you look for contacts and either email or give them a call. I inquired into the Scot Trial via email and received (very quickly) some great information. Trial researchers seem to be extremely helpful.

 

It's great to know that your mother has been getting excellent care and that she has been working with specialists. I'm not doctor, but what I've learned and read, many doctors do treat the symptoms. If she's on immunosuppressants, then they are trying to slow the progression of the disease. That's what helped me.

 

I hope you have luck with your research and contacts. Your mother is very lucky to have you working so hard on her behalf. You're a very special person.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi,

I am sorry to hear about your mom. It must be very difficult for you and your family to watch her suffer. I checked the protocol for the 2 Stem Cell transplant clinical trials recruiting in the USA-- the SCOT and the Northwestern trial through the links above. The SCOT trial age cutoff is 69 and the Northwestern age cutoff is 70 years.

 

As a side note, the typical treatment is to treat symptoms so as there is no "cure". By treating symptoms, the goal is to keep the sclero patient as comfortable as possible. Best of luck. Gidget

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Dear rmm,

 

I am sorry to hear your mom has had to deal with scleroderma and all the symptoms.

 

In answer to your question, I had the privilege of undergoing an autologous stem cell transplant back in June of 2000. During that time and long before that, the stem cell transplant procedure was administered to cancer patients and proved to be successful and beneficial in battling cancer. In the 90's, doctors came up with the idea that this procedure could also benefit patients diagnosed with autoimmune diseases. The first SCOT trial was coordinated and began accepting their first group of candidates for its study. I was No. 18 of that study and nine years later, can say my condition is stable.

 

Since that time there have been improvements and modifications to the various transplantation studies. Protocols for accepting candidates vary for each study. Since the inception of the stem cell transplant clinical trials for scleroderma, I believe the medical field has made tremendous strides and progress through trial and error by observing their patients.

 

Personally, I have experienced improvements to my health compared to pre-6/2000. My skin loosened up and is no longer as tight, I can breathe better, my mobility is better, I don't have detrimental major organ involvement and my pain level has improved. In my case, the stem cell transplant stopped the progress of scleroderma and improved most of my symptoms. I am still affected with symptoms such as acid reflux, raynaud's, arthritic pain in my hands, stiffness in my legs, occasional finger ulcers and other (what I consider) nuisance symptoms, rather than life-threatening.

 

Personally, I believe with the numerous stem cell transplants taking place here in the USA and overseas, and now with government support, that the procedure and research will continue to improve.

 

rmm, there are inspiring stories on this website of members who experienced a stem cell transplant. If you search "stem cell transplant stories" on the main page it will pull up a listing of stories.

 

I admire your courageous strength and compassion in supporting your mother. You are both blessed to have each other.

 

rmm, if you have any other questions, you can p/message me.

 

Kindest regards,

Razz


Live well, Laugh often, Love much

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Hi rmm,

 

I had a stem cell transplant through the SCOT study in March of 2007. I have had remarkable results. Prior to transplant my skin was extremely tight and things were rapidly deteriorating. My skin score was in the 40's(the worst is a 51). My skin score is now a zero(normal). My PFT's have even improved a little. I am pain free and living a relatively active life. I am employed full time and count my blessings each and every day.

 

I think Janey has given you some great advice about e-mailing or contacting directly the various trials that offer this treatment. I know that when I was screened for the study, they were only accepting patients in the early stages of the disease whose disease process was very aggressive. However, I think the screening requirements have changed a bit since then so that more people are accepted into the study. The age requirement may be a problem but there is certainly no downside to contacting them and see if they can help. While there are certainly no guarantees, there are many besides me that have had remarkable results with the transplant. I would definitely contact the various programs and talk with them about whether it might be right for your mom.

 

Best of luck to you and your mom and if there is anything we can do to help don't hesitate to ask.

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I am a 56 year old woman and have had sclero for five years now. I have kidney failure and am on dialysis. When I asked my doctor about a stem cell study, she said I wouldn't qualify because of the kidney disease. I think it had to do with the medications involved. Sorry to put a damper on things. I would still research it and see if it is possible.


ISN Artist

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