Colorado CU vs CBCI

[rar]

Any opinions as to which hospital gives me a better chance of surviving a SCT? Which does more transplants?

[DanL]

I just had my transplant at CBCI. CBCI does far more transplants than CU, it is not even close in terms of numbers, and the success rate with CBCI is probably 50% to 100% better than CU at this time.

CBCI has an excellent team of doctors, nurses, and support staff. I have been nothing but happy with all of them.

I have met almost all of the doctors on the CBCI team, there are 9 of them, plus when you go in for transplant, they have a very good infectious disease team that comes in and visits you daily to be there to take quick action for any potential problems that arise.

While i was in, I contracted a Klebsiella infection, within 30 minutes of my first infection, I was on antibiotics, had a number of blood tests run, and was on quick surveillance for the night. I was fortunate to have this level of care as Klebsiella is a pretty serious infection. I credit the team and their procedures for my success to this point, I am now at day +53.

Please feel free to contact me if you have more questions about CBCI.

[rar]

Hi Dan,

From your day 44 numbers it looks like you are doing well.

In 6 months my probably never need treatment MDS went to 13% blasts and a transplant is my best hope. I am starting on a clinical trial drug AG221 in a week. They say they will know if it works for me in about a month. Will it be a problem getting treatment rfom CU and transferring to CBCI for transplant? If AG221 doesn't work I will try Vidaza. I am trying for a sibling match. They range in age from 56 to 78, one is a current smoker. Does that make much difference?

If it is not too much of an imposition could you give me a brief overview of your experience at CBCI such as your type of transplant, your donor's experience, how long of a hospital stay, post transplant treatment, experience with the staff, how close to St. Luke's do you have to be, for how long, etc. I am a bit anxious about the whole process.

Thanks

Ray

[DanL]

Ray, I am now at day +52 and continue to improve week over week. I am very fortunate in that I only live about 15 minutes from P/SL, but part of their program is that they want you to be within 30 minutes for the first 100 days. P/SL has great social and financial counselors that can help you find housing and funding if needed. Also, if finances are a concern, go to the LLS co-pay program website and apply for any assistance you might need. It is pretty simple and very generous.

My donor came from Germany, so I am not really sure what his experience was, but I am eternally grateful for his willingness to help a complete stranger. From what I have read, it is not too terrible on the donor, but could leave them with flu-like symptoms for up to 2 weeks, and requires a few days of their time where they have to be given a full workup on their blood and overall health, similar to what you go through to make sure that the match is a good fit on several different levels other than just HLA markings. Some donors that I have spoken to in the past have been very glad they did so.

In general, they are looking for healthier, stronger, better matched donors, so smoking may or may not play a role depending on the availability of better matches and their underlying health conditions.

As far as transferring facilities, it is a delicate move as doctors are people and can get their feelings hurt when a patient moves from one doctor to another, but this should not impact a decision that affects your life. It may cause a slight delay, but if you are in contact throughout the process, and honest about your intentions, then it should be facilitated between the facilities.

I was in the hospital for a total of 29 days, which included 8 days of conditioning and 21 days of recovery/engraftment. I had severe marrow fibrosis at the time of transplant, so engraftment of neutrophils may have been slightly delayed, as they seemed to come in at about the same time as platelets and red blood cells in my case.

As I may have mentioned, I spent quite a bit of time getting to know each of my nurses and doctors and tried to form a little bit of a personal relationship with each of them so that i knew who was taking care of me, and I was extremely impressed with their dedication to their jobs and how much they really care about the condition of their patients. Nobody I met was there to do a job, everybody was there to save a life, it was their passion, not their job, and you could feel it. their advice came out of compassion and experience, not out of procedure and protocol. The staff is a big thumbs up, and that starts with the folks in the kitchen, and goes through to the infectious disease doctors that visit you, even though you are not directly their patient, and of course the CBCI staff is wonderful. Most of your time is spent with your nurses, and they are what make or break your experience, and they made mine a good experience in a tough situation. One perk is that they have physical therapy, a dietitian, and a massage therapist come in once a day, and a volunteer brings in a treat like ice cream each day.

My transplant was a 10/10 matched unrelated donor, male to male, same blood type, and several other nice matches like CMV and HSV status.

Now that I am out of transplant, i have minor GVHD, go into the clinic twice a week (it was initially 3 times), and we adjust stuff just about every time to help me out. I meet with the nutritionist and psych briefly every week or two or as needed to help out with diet, nutrition, and stress if needed.

Sorry for the lengthy answer, I hope that answered all of your questions.
Good luck on the trial.
Dan

[rar]

Hi Dan,

Thanks for the comprehensive reply. I have Medicare with a supplemental insurance that covers all the co-pays. I can probably afford the procedure without help, but if covered by insurance I shouldn't have to pay. Who pays for the expenses of the donors? Does insurance typically pay for temporary housing? Does a male donor make much difference other than I end up with a XX blood chromosome if my sister donates?

The doctor I see at CU is a research doctor rather than a transplant doctor so that might make it easier to transplant at CBCI. Currently I am seeing Dr. Nash who seems genuinely interested in my welfare, a local oncologist, and the research doctor. I am averaging 3 doctor visits a week and at least one blood draw.

Where did you get the statistics on CU vs. CBCI?

I hope I do as well as you have so far.

Thanks for the help.

Ray

[DanL]

Ray,

the donor expenses are covered by your health plan typically. some insurance pays for temporary housing, you can usually call them and ask directly what they cover. it is usually a limited amount like $50 per day but i have seen some as high as $90 per day, but again, CBCI and LLS can help out as well.

Female donors to male recipients tend to have higher rates of gvhd, which is why this can be important. Behind relapse, GVHD is a big problem along with infection.

Dr. Nash has a fantastic reputation and seems to be a very good doctor in my limited interactions with him, but I have thought that of all of the staff as well. I believe that Dr. Nash has some ground breaking research under his belt in the past.

Lastly, my stats come from two sources, one is Marrow.Org, which has a section on transplants by hospital, broken down by disease and by related/unrelated donor, and the other is the recent rankings that were provided to CBCI showing them to be the number one BMT team for their size, which I think was around 200 transplants per year.

Again, best of luck.

[bailie]

Ray,

Just for information, I was given the cost of the transplant at $433,000. I am looking at transplant about the first week in August.

Also, I was told that the best donor is a 21-25 year old male if unrelated. I don't know how that would compare to a 50 year old sibling.

My insurance will not pay for any housing. This will vary with different insurance companies.

[KMac]

Hi Ray,

I'm another patient of Dr. Nash/CBCI/PSL. There are probably not a lot more technical/logistical details I could add beyond Dan's excellent summary, but I just wanted to also state how extremely pleased I have been with my treatment, and with the whole team at CBCI/PSL.

I'm glad to hear you are seeing Dr. Nash. He's a brilliant hematologist/immunologist and one of the kindest men I've ever met. There really seems to be something special about CBCI in the staff they attract and the overall environment they provide. I hear again and again from fellow patients the same praises, that there is a passion and dedication among the staff that is completely authentic. Most importantly, that dedication is reflected in the hard numbers, the outcome statistics for CBCI patients when compared to other hospitals.

One more thing I would add, I have heard rumors (could be unfounded) that some transplant centers 'cherry pick' transplant candidates to improve their statistics. If anything, CBCI does the opposite. I believe they offer transplant to anyone who has a fighting chance of making it. I've met patients there who came through transplant quite well, with survival odds well under 50% on the front end. I've met 2nd and 3rd transplant recipients who CBCI did not give up on (and who eventually went on to full multi-year sustained recovery), folks transplanted at 70+ years of age and doing well. My point here is, not only does CBCI have excellent post-transplant statistics, those stats are from a pool of people including many who would be completely ineligible for transplant in another time and place.

I agree with what Dan said, about how delicate a situation it can be to switch doctors/hospitals. That seems to me, all the more reason to fully switch to CBCI sooner rather than later (if that is to be your decision), so that you are not dealing with that switch just as you are preparing for transplant. A professional doctor will respect your decision, and I think a truly good doctor will go a step further, and help get you where you want to be.

I wish you the best in your fight against MDS.

[rar]

Thanks for all the replies. The reason I am going to CU is because they are the only one who is offering the clinical trial that I am interested in. I have told CBCI I am interested in having them do the transplant and am meeting with Dr. Nash on Wednesday. I view the trial as an opportunity to hasten the transplant by a couple months best case. Worst case delaying it by a month. I have not committed to CU to do the transplant. They want me to meet their transplant team on Thursday. It is like walking a tight rope.

I am 73 which is against me, but I am fit and healthy so I think I stand a fighting chance. It is encouraging that they will try a second or third time. I am not ready to give up.

The HLA matching so far shows 2 sisters who match and one brother who does not match. There are three more yet to be tested.

The statics do favor BCBI. My retired oncologist brother in law thinks highly of Dr. Nash.

Ray