Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > MDS
Register FAQ Search Today's Posts Mark Forums Read

MDS Myelodysplastic syndromes

Reply
 
Thread Tools Search this Thread
  #1  
Old Fri Apr 18, 2014, 12:23 PM
Caregive Caregive is offline
Member
 
Join Date: Nov 2013
Location: USA
Posts: 61
City of Hope for MDS treatment

We have a relative who says we should go to City of Hope in California. My husband has MDS. Have any of you gone there and was it better than any other medical place for treatment of MDS? We have been to Seattle Cancer Care Alliance which is U of WA hospital and Fred Hutchinson Cancer Center and a children's hospital working together on all manner of cancer. Some in the family think I'm not doing enough for my husband. He says he's not hot to do the trip to City of Hope in LA and would rather go somewhere where he can learn more about alternative treatment for MDS. Any comments helpful. Thanks.
__________________
Caregiver for husband
Reply With Quote
  #2  
Old Sat Apr 19, 2014, 01:23 AM
Ruth Cuadra Ruth Cuadra is offline
Administrator
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 612
Caregive,

I understand your dilemma about going to City of Hope for a second opinion for your husband. When I was facing the possibility of a transplant for MDS in 1998, City of Hope was our "home" hospital and our first choice, but we knew Fred Hutchinson (before it was SCCA) had the best survival statistics. So we made the trip to Seattle and seriously considered how to move our family up there for about six months. City of Hope and the Hutch were very comparable, but we were more comfortable staying where we knew the ropes at the hospital, could leave our young teens in their home and schools, and would have our extended families nearby for support. City of Hope saved my life so, yes, I think it's better than any other medical place for the treatment of MDS. But I also have no doubt that your husband would get top-notch care with SCCA.

Hope this helps.

Ruth
__________________
Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
Reply With Quote
  #3  
Old Sat Apr 19, 2014, 10:25 AM
Caregive Caregive is offline
Member
 
Join Date: Nov 2013
Location: USA
Posts: 61
Thank you Ruth. We discussed this topic yesterday at the doctor's office. He is refering my husband again to SCCA in Seattle for a loook see. I feel like any of the main places are as good as one another for diagnosis and treatment. The information is available to all doctors and they have contacts at places other than where they practice so I contributed to AAMDS and hope some of that money goes to research so more can be learned at any place that has studies going on. Now on to the hospital for a transfusion.
__________________
Caregiver for husband
Reply With Quote
  #4  
Old Sat Apr 19, 2014, 10:18 PM
barbara a barbara a is offline
Member
 
Join Date: Jul 2013
Location: hendersonville,nc
Posts: 51
caregiver

Don't listen to anyone else but your husband and your inner voice- do what you can as best as you can and communicate clearly with your husband it is all about the living, laughing and hope
My husband was diagnosed when research and interest in AA/MDS was at a beginning stage, the options were nil to none all was clinical we talked, listened to each other, went to a wonderful doctor at Duke University in NC after MD Anderson doc had diagnosed him The internet has changed so much in exchange of data, scientific and health research has embraced AA/MDS finally you do what works for you two, you two are what works best.
Hang in there

Barbara a member
Reply With Quote
  #5  
Old Mon Apr 21, 2014, 12:35 AM
Caregive Caregive is offline
Member
 
Join Date: Nov 2013
Location: USA
Posts: 61
Thank you Barbara. We went for a nice ride into Idaho today and did some trail hiking, fairly level and with a creek running next to. We need to keep doing the things we enjoy, you're right about that. So no appts for a spell now so can focus on real life. The garden, talking to family and all that.
__________________
Caregiver for husband
Reply With Quote
  #6  
Old Mon Apr 21, 2014, 12:54 PM
KMac KMac is offline
Member
 
Join Date: Oct 2012
Location: Golden, Colorado
Posts: 103
Caregive,

I understand both City of Hope and Fred Hutchinson are excellent hospitals. I doubt you'd be doing wrong at either. Only you and your husband can make the decision of course, but I see a number of things weighing in favor of Fred Hutchinson for your personal situation:

1) As Ruth said, they have such great transplant statistics.

2) Also as Ruth said, leaving your home area for treatment adds a whole other difficult dimension to everything else you are dealing with. I'm glad to hear you are both still connecting to the landscape around you and going hiking. I think home and that connection to what surrounds it counts for something in recovery, although I doubt it has been quantified in studies. And this would seem especially valid in your case, as you mentioned your husband is not excited at the prospect of picking up and going on that long haul to CA.

3) From personal experience, my hematologists at CBCI in Denver have all worked at Fred Hutch, and I've been very pleased and impressed with each of them.

4) As you mention your husband's interest in alternative treatment, my doctor (Dr. Nash at CBCI) has told me Fred Hutchinson does extensive work integrating alternative therapies into their treatment plan. I believe there is an alternative center there in Seattle that they work with directly.

...none of this is to discount City of Hope in any way. We are fortunate that while in some parts of the world patients cannot get the treatment they need, our dilemma is in choosing between multiple excellent options.
__________________
Kevin, male age 45; dx SAA 02/2012 - Hgb 5.8, platelets 14, ANC 200, 1% cellularity. Received ATG 03/2012. As of 03/2015, significant improvement - Hgb 15, platelets 158, ANC fluctuates around 1000, Lymphocytes 620. Tapering cyclosporine. BMB 20-30% cellularity.

Last edited by KMac : Mon Apr 21, 2014 at 01:06 PM.
Reply With Quote
  #7  
Old Thu Apr 24, 2014, 10:23 AM
Caregive Caregive is offline
Member
 
Join Date: Nov 2013
Location: USA
Posts: 61
Kevin, thank you for that nice, well-thought out reply. My husband is satisfied with his treatment though he is glad we are being refered back to Seattle where he can ask more questions. I think his daughter is glad he is returning there. She lives in Seattle whereas we are 300 miles away. So we can stay with her when we go.

At this point the main problem is the itchy bumps on his back. The dermatologist at the VA gave us several ointments to put on but I don't know what is causing it, maybe Exjade, maybe part of the kidney issues or bone marrow issues. Or from the blood transfusions. How does one figure that out?
__________________
Caregiver for husband
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
New York City Community of Hope Marrowforums Support Groups and Communities of Hope 3 Sun Jan 3, 2016 02:30 AM
Ellicott City Maryland Community of Hope Marrowforums Support Groups and Communities of Hope 0 Sun Aug 2, 2015 06:05 PM
Oklahoma City Oklahoma LLS/Community of Hope BMT Support Group Marrowforums Support Groups and Communities of Hope 1 Wed Jan 14, 2015 07:16 AM
Oklahoma City Oklahoma LLS/Community of Hope Support Group Marrowforums Support Groups and Communities of Hope 1 Wed Jan 14, 2015 07:10 AM
Interactive Treatment Center Map Marrowforums Site Announcements 0 Tue Jan 1, 2008 11:22 PM


All times are GMT -4. The time now is 10:48 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2020, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright 2006-2020 Marrowforums.org