Anyone hear from sbk007
 

Has anyone heard from Steve? He used to be on here a lot but his last post was in October. I've pmed him but no reply.

Thanks Blair

Ray (rar)
 

No - sorry Blair.

I would like to know if Ray is OK too - it's a while since we have heard from him.

No I didn't kick the bucket yet, even though the nurses told my wife I came close. With some minor problems I made it through day 100. Then I got very sick and spent 2 months in the hospital flat on my back. I had CMV, C.Diff and stage 4 GVHD. GVHD attacked the gut. With constant diariahha I couldn't eat for most of the 2 months and lost a lot of muscle mass and 35 pounds. I am back home after they cured CMV and C.Diff. They say GVHD has no cure but they can moderate the symptoms. I am recovering slowly until today when my wife gave me the flu. I don't want to go back to the hospital.

Ray

Ray, it is so good to hear from you. You are a trooper and hopefully you will be starting an improving trend. Our family is always thinking about you.

Yes - wonderful to hear from you, Ray. I have been quite concerned about you. Fantastic that you survived your recent run of ill-health. I hope and that your GVHD will improve and that you will be able to recover at home from the flu. Sending thoughts and prayers your way!

Ray,

Good to get an update from you. I am a little concerned that you were told that there was no cure for the grade 4 gvhd. There are a lot of trials out there to try and address GVHD, even for steroid refractory patients. Have you been able to get a second opinion on the GVHD?

Dan

Hi Dan,

Thanks for the reply. There is a fine line between control and cure, so we may be talking the same thing. I am going for a second opinion next week. I would appreciate any specific treatments I should be asking about. Any clinical trails, I have participated in 6 all ready. How have you been doing. I missed a couple months of posts while in the hospital.

Thanks

Ray

Ray,
This is a crap shoot and everyone seems to react and respond so differently.
Tomorrow 1/1/15 I go to OHSU for my BMT. This disease really sucks.

John in Portland, Oregon

@johnwc - best of luck with the transplant and a truly new year for you. The best advice that I can give is to get up every day and move, walk around, get a little bit of exercise, even if it is only 10 or 15 minutes at a slow pace. This seems to really help your whole system cope with the chemo and other drugs you will be exposed to. The other is to find food that you like or can at least tolerate, and eat what you can comfortably. Lastly - don't spare the anti-nausea or pain killers as needed.

@Ray, 6 clinical trials is a lot - I haven't seen the full list of what you have tried so far, but a couple that are gentle would be photopheresis - I am currently doing that 4 days per month and it seems to have begun controlling my gvhd of the skin and gut - although I have also been taking entocort intermittently. For a while I was on tacrolimus + sirolimus and have also tried prednisone. As you probably know, I had a relapse a few months ago that we have been treating with Vidaza. I am still 100% donor in both the marrow and peripheral blood and seem to be responding to treatment.

Here are some of the current treatments that are tried for refractory cases: mycophenolate mofetil
Anti- IL -2
ABX-CBL
Etanercept
Denileukin diftitox
Pentostatin
Brentuximab
Nilotinib

There are several others out there, but these are a few that I was able to locate. There are just so many combinations and possibilities, and one or two of them just might work. It looks like the Hutch up in Seattle is kind of leading the way on GVHD research. You might want to check their site out for their GVHD trials.

John,
Our thoughts are with you. Please ask if you have any questions. It seems I can wrap my mind around exactly what you are going through at this time. Just as Dan said, constantly be searching for what works best for you.

Dan, what was the indicator of your relapse? Did the genetic mutations come back in identical form? Blast count? Sounds like the blood is still stable/donor.

I too wonder about sbk007? He has been so helpful for everyone.

@bailie,

The primary indicator of relapse was the result of my bone marrow biopsy in August which showed multiple trisomies in 1 of the 21 cells reviewed by the pathologist. My cells still looked normal and there weren't any increases in blast cells. The evidence of dysplasia was not present, but the cytogenetics said otherwise. I had the trisomy 8 that was a part of my original diagnosis plus 3 other trisomies in that cell. The other giveaway was that my blood counts were dropping, in particular the platelets. This was all of course complicated a little by a drug interaction that I had that caused some HUS/TTP. Stopping sirolimus helped, but a full blood count recovery did not accompany the withdrawal which is why we did the biopsy.

Hi Dan

The trails I was on were not for GVHD. After transplant I was on mycophenolate mofetil but they stopped it. Currently I am on tacrolimus .5 mg daily. I started with 50 mg. prednisone tapering down to 10 mg. daily for the indefinite future. After 2 months of not eating the gut lining seems to be repaired enough that I am able to eat again. I am also on 2 liters off TPN intravenous that should stop in a week or so. The doctor is taking a wait and see attitude to see if the tac and pred will control the symptoms. My skin is flaking off and looks like a snow storm. Gut is more of a concern than the skin, mouth is OK so far. I will look at Hutch site.

Thanks

Ray

Ray,

It seems like photopheresis or PUVA might be options for the skin gvhd issues. Are those available for you at this point? Karen (handle Mausmish) had pretty good success with the PUVA skin therapy.

Dan, I've had UVA1 therapy - similar to PUVA but doesn't require any drugs. It has been helpful.
Karen

I also sent Steve a private message. I know him and Dave used to talk back and forth privately. I wanted to tell him of Dave's passing, but I never heard back. I hope he is okay.

I really hope sbk007 is doing OK. The last message I got, "I see the patterns on here with my disease type and although I feel good now its just a matter of time before the disease progresses.
I wish it weren't that way but its a recurring pattern I see on the Forum and the same pattern my doctors tell me to expect. Short of a Miracle its not likely that I will stay stable. I went for a physical feeling fine and got a call the next day that my blood was abnormal, and 2 weeks later some hematologist was telling me I had a fatal disease. It took time to accept it but I understand I have this thing and it won't go away by itself."

He indicated to me that he wouldn't be having a SCT because he was alone and didn't have a caregiver. I hope that he makes it back to the forum and something very good has happened.

I received a second and third opinion. They do not want to cure GVHD but just control it at some low level. The GVHD tends to kill off some residual cancer cells and is a good thing to have. I will inquire about clinical trials.

I am finally off IV feed. After 3 months connected to an IV pump it feels good to be off the pump. Next week they will remove the trifusion port that has been in there for 6.5 months.

Ray

Ray,

Congratulations on getting off of the pump. That is fantastic news. I agree that the doctors do like to see some lower level of GVHD due to its anti-mds effect. We keep tapering me off of entocort and tacrolimus, but I keep flaring up just a little each time, so we end up adding a little back to find the right levels.

What levels of Tacrolimus? I am on 1 mg in the morning and 1 mg in the evening.

Really good to hear that all three of you guys are hanging in there. Well done! I (along with many others on the forum, I'm sure) start to get concerned when people go silent, so please keep posting if you can.

A sad note here. "Johnwc" passed on July 1st of this year from lung complications from GVHD. We shared many conversations and I appreciated all of them.

That's sad news. He had a tough hill to climb after his CMML transformed to AML prior to transplant, although he seemed to be managing with less severe GVHD earlier this year. What a shame to lose another member of our community.

That is sad news.