Hi all...While waiting to get with Dr. Talpaz (at U of M formerly at MDA) this Thurs...the Cleve Clinic Transplant Doc team want to pursue DLI if Alpaca in agreement. BJ s case is rare though because he is still 100% donor with perfect counts and has relapsed with 2 quarter of inch lumps in each nipple...No other lumps found....
Started new discussion b/c I'd like to hear specifically about DLIs and how effective they have been...
Bless his donor's heart..she is in Germany and will donate blood July 3rd if Talpaz agrees...
I havent had any experience with DLI, but I believe Kelly has. I'm sure he will get back to you. Just wanted to drop a line and let you know we are all praying for you guys! He is one hell of a fighter.
Dr. Talpaz wants BJ to go on Ponatinob . He and U of M will have it hopefully Mon July 10th in their hands...It is in final stages of FDA approval...so this won't be a formal trial...but still has protocals..But if something gets delayed then he feelinGS should go forward with DLI...He and Dr K talking today...
The tricky part of this is that the National B Marrow registry does not allow the donors DLI donation to be frozen..BJs 19 year old donor from Germany was scheduled to donate this July 3 with the DLI being done July 5...so I don't know how avaiable,/willing she will be, say his couple of weeks, if this becomes an emergency need...
I don't have to try to express helmed are feeling b/c thankfully you guys get it....
that is good news - that drug has been having really great results - and the fact that BJ is now a patient of the world reknown Dr. Talpaz should give you great hope - I had gotten the ok to get that drug on compassionate use, had my induction chemo not worked to get me to transplant...fortunately I didn't have to go that route
You have all had a long bumpy road - here's hoping this provides just what BJ needs to fight off this peculiar CML attack...I will be praying that the DLI issue gets straightened out should he need to go that route, I am actually surprised that that was brought up considering BJ is still 100% donor cells
Here's hoping the road gets a little smoother from here
I'm sorry you're having to play the waiting game and facing all the uncertainty it brings. I figure everything will work out but I realize you're probably on pins and needles right now.
I don't understand why DLI samples can't be frozen. I mean, they have my donor's excess cells frozen and there's nothing I could think of they'd actually do with them other than a DLI.
Sometimes the regulations do seem stupid, don't they?
Keep us informed.
My name is susan M and I had a donor transplant for cml in 2005. The Doctor's at my transplant Hospital froze my Brothers stem cells in the event that I had a relapse. Three months after my transplant I relapsed and had Two DLI treatments. Prior to the infusions, I was in a bad way.Everything went hayhire. They couldn't control my blood counts, especially my platelets. They even put me back on Gleevac, Hydroxeyurea, anagralid an another assortment of meds. I had two infusions over a two week period. That was in December of 2005. The last time any cml was detected. I had a fish study, bcr for abl and no cml cells since. The infusion was simple.Just like a blood transfusion. takes a while for counts to recover but all went well. No walk in the park by any means but we fight a good fight, right?
The other thing that I remember is that I stunk like garlic for a long time. Turns out it was from the preservatives used in the freezing process.
I wish you well and I hope that this helps. Many Blessings, Susan
My thoughts & prayers are with you!
The DLI itself was a very simple procedure--like a very mini blood transfusion, without premeds! However, getting all the ducks in a row beforehand was much more complicated.
And I wish I could reassure you with a more positive outcome but it didn't work out that way for us, so I am relieved to read that you will likely soon start a targeted therapy.
My husband had a haplo BMT at Hopkins for T-cell lymphoma in 2007--5 years ago today to be exact.
He had disease recurrence in March of 2011, had emergent radiation to that one site & received a DLI in May. Everyone was quite confident all would be well.
Sure enough, NED 2 months later, but less than 2 months after that...widespread bony disease.
More radiation & steroids to treat spinal cord compression followed by weekly chemo (pralatrexate) that was not available when he was first diagnosed. 3 weeks ago he started on another new chemo (romidepsin) & next week will start a short course of radiation to treat some active bone mets.
Recurrent/relapsed disease is sneaky. Go big.
Take care & love life,
Dear Susan and Lynne-
Thank you so very much for sharing! BJs donor unrelated from Germany and she donated bone marrow...our doc said there is only extra to be frozen if it is a stem cell collection...Thankfully this 19 year old angel is very willing to donate again for DLI....I guess we will find out Monday the direction we are taking...Prayers and smiles to you both :-)
Yes, she is indeed an angel!
Our daughter was my husband's haplo donor and it was also marrow collection for the transplant.
For the DLI, we thought that she may have to have neupogen injections to stimulate her stem cell production & the cells collected through a peripheral pheresis procedure but after all the pre-labs & calculations, the folks at Hopkins decided that enough could be collected from a standard blood donor procedure.
So on the day of the DLI, she donated a pint of blood in the morning; the sample was processed & only 45 ml were transfused into my husband a few hours later.
I'm curious how things will be handled in your situation.
We hope & pray that everything will go well for your German Angel and especially for you!
take care & love life,
I am supposed to receive a DLI this Monday, July 23rd. So I don't have much information on it now but I will soon!
I'm not sure what type of cancer BJ has but I was diagnosed with CML chronic phase in June, 2009. I tried all three drugs on the market Gleevec, Tasigna, and Sprycel, but all led to low counts and toxicities of some kind.
I had a SCT on March 30th, 2012 and I am now PCR .01 with 100% donor Myeloid Cells, but only 22% donor T-cell. So we are really doing the DLI to complete the Chimerism. So far I have been lucky with no GVHD.
Good luck to you and BJ and as I learn more about the DLI process I will post on here!
Hi! Replied to you privately - but I know how much our discussions can help others too! Currently BJ has been on Ponatinib for two weeks. His platelets, which had finally made it to 100 are dropping - last report at 75. Hopefully, they will not be suppressed too much - which had happened with Gleevec, despite having great MMR results.
The tricky part now is that the GVHD can't be treated or he will have to go off the Ponatinub, at least until it's FDA approved - later this year - probably.
He does have severe joint pain - which had started before the Ponatinub - and can no longer play golf as he can't close his hands enough to grib clubs. He is ever hopeful that he can get back to college (live at home) and at least do 12 hours (should be able to get vaccines in couple weeks). June 15th marked the date of blast crisis/induction, with MUD transplant date of Nov 2, 2011. He relapsed outside of marrow (he is still 100% donor) in a very small lump in breast - thus reason for Ponatinub trial.
He is extremely tired again and just plain old sore. Will keep you posted as he returns to Michigan on Friday for check-up. He is monitored by his transplant team at Cleveland Clinic, with labs done every Tues and Fri locally, and faxed to both teams...
BJ's donor (Germany - 19 year old) is donating for DLI end of August.
Well they pushed back my DLI one day due to "logistics". But that's okay because I feel like I got all the nerves out today, and tomorrow I can go in like a champion!
From all the research I've done, and what I've heard, a DLI can be extremely effective for CML patients in that it produces the Graft vs Leukemia or Graft vs Tumor effect. But again, I will let you know how things go tomorrow!
What sort of GVHD did BJ get? Acute or Chronic? I know a major concern with the DLI is the risk of getting acute GVHD. Was told today that it typically appears around 3-4 weeks after DLI. But of course everyone and every situation is different. Good luck to you and BJ!
BJs GVHD has been in the form of joint pain, very little saliva and barely sweats...He also has to be careful of most dairy products and was rated a 1/2 grade GVHD of intestines.
The fatigue is still a concern. We will keep our positive thoughts and prayers towards a successful DLI!
Nate has dealt with some serious GVH of the joints since transplant; it doesnt seem to be common, but it does happen. If they can give him pain meds, he should take them because the pain can be crippling. Nate was on a high dose of oxycontin for a while and has tapered down to now 20mg a day, which is incredble. There isnt much that helps with the joint pain besides pain meds since he cant take pred or tacro, but Nate seemed to feel slightly better if he did a little yoga. Just a few stretches and relaxation poses a couple times a week made a huge difference. Have him try these (you can google them): child's pose, downward facing dog, and sun salutation. The first two were great for Nate's back, shoulders, and elbows.
Fatigue is going to be a part of it and might be for a long time. From time to time, I still need to remind myself that fatigue is the number one complaint of long-term survivors. As young as he is, I suspect his energy will return sooner than later. Just remember what "later" might be...I'm over eight years out and still experience tremendous fatigue.
I also don't sweat much, especially under the arms. It might be GVH damage or just the atmosphere here. With little humidity, the sweat dries pretty quickly. I have dry mouth occasionally but it's not been a real issue, I can just drink a lot of water and it resolves itself in time. It's not unquenchable like the dry mouth some folks get.
I'm sorry he's having issues. Please keep us posted.
Thanks all for your input and best wishes. The DLI was put on hold when BJ accepted for Ponatinub..The Michigan team does not want BJ to get DLI b/c if he gets acute gvhd and needs steroids he will lose Ponatinub. . Our transplant doctor wants one bc he says they are most effective with least amount of leukemia in system and he only wants to wait till end of summer on ponatinub results and then do DLI. BJ is still 100 percent donor in marrow and only the small breast lump had leukemia cells.. So while we wait I keep researching DLIs and I thank LCasey and caruso for sharing...I'm so confused since he is 100 percent donor and DOES have mild gvhd...When I contacted via email Dr Andersson at MDA he relayed message that a 2nd transplant may be needed..so that is on back burner too....I guess my fear and the discussion that must be had with transplant doc is that if he already has mild gvhd wouldn't the DLI produce acute...I really need to be convinced re DLI...in my heart it just doesn't seem like the right path. So we pray ponatinub works...Will update after the Fri visit to MI (3 hour drive for us w/o stops).
Thanks support team!
So let me get this straight since i know very little about cml. Is ponatinub a TKI drug that has not been used on BJ before? I take it TKIs have been ineffective in the past thus the transplant?
Has the lump in his breast/chest gone away? If not, and this may be a stupid question, how do they guage clinical response?
MW- BJ dx CML 11/09...Went on Gleevec and had complete response except it suppressed only his platelets...when that happened he would take a couple days where he didn't take it..b/c his response allowed it. When he went into blast crisis last June it was so rare that the Cleve Clinic had not seen it in over 10 years..He had 7+3...unlike AML there is no HiDac etc. Transplant only option for blast crisis because studies show TKI only work for a couple of months than blast cells return..BJ was on Sprycel from June 2011 (he lost his first donor in Aug) and blast cells retd early Oct. They controlled blasts with outpatient ARA-C and then he had transplant Nov 2nd...
Ponatinub is. Awaiting FDA approval, so BJ and 15 others with similar "rare" responses are now able to participate in the last study (not true trial...those are complete) from Michigan thanks to Dr Talpaz.. The hope is that Ponatinub will now control this relapsed CML which is out of marrow and very rare. They hope that this very small lump disappears and they will use a mammogram type test to gauge along with needle biopsy...but last time they couldn't even get any fluid it is that small.....Thanks for your interest...Now BJ is both a transplant and a leukemia patient...
Thanks for explaining BJ's case and it sounds like the ponatinub is a temporary measure to keep the cml in check? Did BJ ever have acute gvhd? Has his present gvhd (i assume it is chronic) increased or decreased since developing the extramedullary relapse? If it has not increased than it seems like the gvhd was not enough to protect him (that is if we agree to the theory that gvhd produces a gvl effect thus preventing relapse).
I guess my question is, what do they feel about his level of gvhd, does he need more?
Sorry for all the questions. I guess being in medicine stuff like this intrigues me... sadly. I hope if anything it sorts things out in your mind.
Hope your visit goes well on friday and most of all, i hope bj is doing ok, physically and psychologically. This must be so unbelievably difficult for both of you.
I guess my fear and the discussion that must be had with transplant doc is that if he already has mild gvhd wouldn't the DLI produce acute...I really need to be convinced re DLI...in my heart it just doesn't seem like the right path.
It could produce acute GVH. It's not a definite but that's why I didn't get the DLI. They said my GVH was a medium level so they didn't want to risk going into acute. They didn't give me a choice. They said my GVH was at the perfect level (but then that's the way I do everything - perfectly).
Had the DLI on Tuesday! Appointment was at 1:00pm, left at 4:00pm. Most of the time was spent waiting for the cells to arrive and waiting for a doctor to double check the cells. The actual infusion lasted maybe, 15 or 20 minutes. My only pre-med was Benadryl at 25mg. I had no reaction other than a slightly weird taste in my mouth. But it was easy breezy and I read a People magazine during!
My Dr. says that the DLI will be given to me in "escalating doses". On average it takes 2 DLI's to get a person into remission. And at most they would do 3 DLI's with me. The DLI dose was very small. And I was told it contained 5 million T-cells. So now we wait. We will know in about 3 months whether the DLI was effective or not. (And was told to watch closely for GVHD in around 3 to 4 weeks) I was told that a DLI process gives me a "75% chance of remission.”
I can definitely understand your concern with the DLI especially since BJ already has GVHD. Are you going to be able to freeze the donor cells just in
case he needs them later on? I think it would be a good back-up plan if the Ponatinub isn't working out.
Best of Luck!
Casey...Yay...I know I emailed you privately and I so want you to keep sharing...wonder if you could start a Casey's DLI thread so that others could pinpoint DLI info specifically...I know you have helped me and I warmly thank you!!!!!!!
Prayers team as BJ admitted yesterday to Cleve Clinic ...shortness of breathe...high heart rate and pleural effusion (had been something they were watching...prior to ponatinub start....getting more tests and draining lung...will biopsy fluid...pray no leukemia found in fluid! Will post when I know more....
I know you sent me a private message, but for the life of me I can't find it! Still trying to figure out how to use this website! But I like your idea of starting a thread about the DLI specifically. I will get one started ASAP or as soon as I can figure out how to!
I'm so sorry to hear about BJ's admission to the hospital. I hope his stay is short and his tests come back clean!
When they were draining BJs pleural effusion the fellow nicked the lung...moderately....BJ had to have chest tube inserted...otherwise we would be home today...Pretty upset last night...it's these "unnecessary...accidental" bumps that can push you to the edge...I do try to find positive and I guess it is that all the fluid now emptied...lung doing amazingly well....BUT BJ said the insertion (done bedside by surgeon) was the worse and most painful thing of anything he's faced to date....
I just can't believe that happened. That is a definitely a situation that will test your patience. So many times I find myself getting angry at the leukemia, but there is just no one to blame. At least you KNOW who nicked the lung. That jerk!
I hope you are home now and resting up!
Thanks for checking in..I took a break for awhile as I really almost broke down last week...This extramedullary relapse really took me to the edge...I know from mom to mom you know what I mean...Seems like I've been researching and researching and if the Ponatinib (trial drug through U of Mi) doesn't work, we have very differing advise on what to do...BJ will be going to the Cleve Clinic next Wed for his one month echo following the horror of last month and the chest tube incidence and then on Thurs to Mi to meet with Dr. Talpaz...at that visit they are hoping to see no growth of the 3 known tumors (largest one is 4 cm) and of course, no new ones. By touch, BJ does not feel that they are getting bigger but he doesnt feel substantial decrease, but again they are small...
Choices include induction, radiation, DLI, looking further down to cord blood transplant....BUT he is 100 donor in marrow...we thank God that his counts are good...What has happened (myeloid tumors only no other translocation) occurs less than 1 percent of time....
He has signed up for 11 hours at a regional campus of Kent State...it is vital to him that he can do this...we pray so...He will be 22 on Oct 8th and he needs to get back to somesort of "identity." I know you all know what I mean...He is not, has never been an indoors, computer kid...sure some video games. like Madden Football, but that's it...since his joint pain has gotten so bad, he can't golf at all...so taking his Biology class is really something he wants to do...
Thank you so much for checking in....Will keep you updated...As always, I welcome any advise or doctor/treatment plans...original dx CML (does not have t131 mutation)...MUD 11/2/11...
Prayers and sunny days for us all - Tracy.
Not sure how one takes 11 hours but, okay. At least in my day, that would be like three three-hour courses and two PE's or two labs.. Blech! Hope it works out for him, though.
Not sure I understand what would be the purpose of a DLI from the original donor. It appears to me the donor's cells aren't doing a great job of fighting off the disease and I don't see what adding more of them would do. . I don't understand all the in's and out's of course, but just looking at it from the outside, I would guess the cord transplant would be better, if that kind of treatment becomes necessary.
Good luck with school to BK. You keep us posted, please.
11 hours is quite a few hours but if he sees it is gonna be too much, he can drop a class during the add/drop period. Steven took 2 classes online, about 3 mos post transplant. I dont know how he did it, he was so sick post transplant, and so mentally fuzzy, but i really think it helped him in all the post transplant chaos, to have a bit of normalcy and goal to focus on.
Really hope this medicine works for BJ and he gets the much needed distraction he needs with school.
If only i could send 5 minutes of peace in your heart, for you. (((Hugs)))
Great news that Ponatinib is working..one breast tumor gone and the other 2 decreased by half...Yes we are celebrating...
BJ goes back to Michigan in 2 weeks...He does have 2x weekly labs and testing at Cleve Clinic. Last weeks CT showed there is now just a trace of fluid around lungs!
His joint pain is severe..like a rheumatoid arthritis...gvhd (can't be treated while P a trial drug)...combined with pill side effects...He still has mild gvhd of mouth and intestines...So the reality is that he is a transplant and leukemia patient...but the reality is also that he is alive...he has 100 percent donor cells still and clean marrow...
He is young...and as I close out blog with...faith family friends and fight....we will continue to battle
Has anyone heard of Vidazza shots given for cml...not sure if there is difference with relapsed tumors between aml and cml ? Just thinking of future since PJ mentioned she is getting v shots for her lump relapse...
Wonderful news. Have they recommended anything for the joint pain, creams, heat, soaking in tubs?? Have you thought about getting a disability hanger so he can at least park a little closer when he returns to school? We had to do that when steven dislocated his kneecap playing dodgeball at school.
I know nothing of the vidazza but that is a great question. Do you have a copy of the pathology report?
Never heard of Vidaza being used for CML but there's a lot I haven't heard of and most of what I have heard of is in the AML world. But it's used to try to control counts and maintain low to no blasts. I can see how it could work here.
But it's wonderful news they're seeing some progress with his tumors. That's what it's all about, isn't it?
The joint pain sucks big time but it's, hopefully, temporary. Sometimes all we can do is hold on and know the ride will be over in the future and just pray that time comes soon.
It's weird to have active GVH, 100% donor and a relapse. Sounds like he was born to be in the medical books.
I just talked about Vidaza to someone so if it was you, I apologize for the duplication..... I had Vidaza to get me into remission before my transplant. I had AML but would imagine it's the same for CML. It was an easy chemo for me. The worst part were the welts that it left. I got the shots in my thighs and the welts were large and painful.
I'm glad to hear that BJ is doing well.
Even Mother Theresa said she believed God only gives what you can handle but why was SHE getting tested so much!
this is day 5 of Cardiac ICU (at least the Cleveland Clinic is number one nationally for heart care!)...BJ had routine appt with cardio as the fluid around heart was small enough and not changing..but he met with Dr. Klein, a specialist in pericardial effusions and he wanted it drained...Gave BJ the choice of now or appt to do it within 2 weeks (You are 21 with an otherwise healthy heart...let's keep it that way so you can keep fighting the extramedullary he said)..So my husband calls me at school and I get up here...UGGGGGGGG NOTHING is ever routine with BJ...Given platelets and all prepped and then it turned into thoracic surgery and he ended up with 2 chest tubes because fluid hidden in diaphragm behind right lung...They decided it would be best to do surgery and cut window in pericardium so if fluid returned it would drain away from heart and not damage it or jeopardize treating disease (When you are young and otherwise healthy they really do "go for it!". Moving to regular floor today...ugg...OH and Tex he probably spill be one for the books because they haven't seen such perfect amount of joint and skin g v h d. We are thankful he is still 100 percent donor and T cells in marrow...
As I read Paul, it's not so much that God gives you trials but that God gives you the spiritual strength you need to face them. I like that reading better. I don't think God gave me anything that might've killed me. But that's my reading and this isn't the place for religious debate. If it helps you, use it, if not, forget it.
NOTHING is ever routine with BJ...
Ah, show me a kid who is routine. In fact, how can we even think of using the word "routine" in connection with our kids?
That sounds weird. Are they explaining why he has all this fluid? Is it steroids? GVH? Did he forget to shake out his ears after swimming?
I assume he's doing okay in general health (appetite, nausea, comfort, etc.)? If not, I hope he's doing so quickly.
they haven't seen such perfect amount of joint and skin g v h d.
I didn't know they had an ideal amount of GVH. Hope they take lots of pictures. Sheesh!
Tell BJ to straighten up.
I would be curious to know the cause of the effusion also, but i never asked, i dont know why. I do recall the transplant doc telling us before transplant that it was a fairly common occurance. And i did see a few cases of children having to be tapped on his transplant floor. Steven did develop a pericardial effusion but it was never large enough to cause concern. Is it the radiation, the chemo, or the flud shift. Hmmm.
I hope this is the last of the fluid stuff and of the chest tubes for BJ. Y'all need some smooth sailing. (((Hugs)))
So glad that he is still 100 % donor.
BJ released last Tuesday. No signs of leukemia at all. None in the fluid and none in the biopsied piece of the pericardium. This is huge because of the extramedullary tumors he is currently battling...if cml found in the fluid/biopsy would mean disease progression. Woohoo and praises! The surgery however really kicked up the gvhd and BJ's skin is now peely again (it did this once before about 200 days post transplant). Active gvhd, 100% donor and 2 very small extramedullary tumors that are shrinking thanks to Ponatinib is where we are now. Both Dr. Talpaz (CML specialist University of Michigan, formerly of MD Anderson) and our transplant doc (Dr. Kalaycio, Cleveland Clinic) agreed and got approved some steroid use so that we could control the gvhd a bit and help put some of the 30 pounds back on that he has lost since the joint gvhd set in). He saw Dr. Talpaz up in Michigan yesterday and now only has to go once monthly (instead of 2x) and labs drawn only 1x weekly (instead of 2).
BJ has had very little steroids during his transplant recovery because Dr. K wanted to be very aggressive as BJ is young and otherwise healthy...he said Thurs. when BJ saw him outpatient that it was time to give him some relief...I pray joints returned to point where he can golf again, etc. When you are young and not a computer/gaming guru, being shut-in, so to speak is not easy...although BJ amazes me with his fight, determination, faith and humor....I know you survivors have those amazing qualities as well...Prayers for all...peace for all