Blasts up/transplant postponed now what?

[MNladyslipper]

My husband was scheduled to begin pretesting for double cord transplant at Univ. of MN – Fairview. He had his bmb yesterday and they called – his blasts are now 25- 20%! Protocol says they have to be at 5% or below to begin. Now what? What will be the next logical step? Please help with your experiences.

[poppyshope]

Bev, this happened to my father after inductive chemo, – have they said it has progressed to AML? I think that the number is 20% but MMSKCC in NYC said that 30% was their number- and again each Doctor thought a little different. The goal is to get those blasts down with as little damage to the body as possible. That said – know that you have time to make informed decisions. Like I said this happened to my dad and becaus he had such damage from the inductive chemo (trying to get to remission for a BMT) he was quite compromised and just could not come back from it. Take time to research your next step and call other institutions and compare info- Good luck to you and you will be in my prayers, Jen

[jaxem]

Bev
We went through the same issue as you, trying regimens of dacogen without & with HDAC’s, clofarabine & mylotarg. They didn’t work for her (maybe mylotarg did) but one might work for your husband. What does Fairview BMT say? As you know, my wife is trying to get started on their NKC/Stem Cell Haplo transplant trial but is running fevers currently & can’t start until they are ironed out. She is battling the MRSA bug & maybe some fungus but it could be from the leukemia. Actually, my wife’s last bmb @ Fairview came out to be 3-5% (mylotarg??), a radical decrease. Fairview still says, however, that she’s better off going with the haplo than a cord because of the fast growing nature of her monosomy 7 & the fact that it takes about a month for the infantile cord cells to start developing whites.
Jen: There isn’t much difference between MDS-RAEB & AML, just the %age amount. I am surprised that Sloan used 30% because Juliet Barker, Director of their cord program, sure didn’t tell us that. Dr. Barker spent 9 years at Fairview and went to Sloan to start their program. We went to her a year ago knowing of her background at Fairview, thinking we could get Fairview experience at only a 100 mile drive away. We were washed out as my wife came up with an 8% blast amount.

[poppyshope]

Jack,
When my dad first went in he had 5% in his BMB took Dacogen and next BMB was at 21% – his Doc (Dr Borachov and Dr Comenzo along with Dr Paraylis From the transplant team at MSKCC) said that they don’t consider it AML till they are at 30% with the BMB, they did say other docs used 20% as a marker as does the literature I have read from the WHO. Jack I also found that the nurses were also divided there too- and the team was more concerned with the whole picture than just blasts. In fact at that point he did another 2 rounds of Dacogen and went down to 1% which they considered good enough for transplant- he had a 9 point match unrelated donor through the red cross which was a miracle they said. His age being 62 and his good health (other then the MDS) were all markers for them to go for it. He had inductive chemo to wipe out his marrow for the trasplant and it did not work with the 1st round so we did round two – I was against it- but my dad said he did not want a “what if” and went for it. They did the BMB and his blasts were up over 50% after that- and he had contacted VRE from low counts and being in the hospital-just down hill from there, in fact it was one day shy of a month that he passed away after his last BMB- his doctor said that there was no guarantee and we knew it too- but we had to go for the cure! Looking back on it I would have called other places after the first round of inductive chemo- maybe not at the time we were going for the cure hindsight now can only help those of you in that situation I guess- for us we had to keep going no “what ifs”! I do say I never saw it coming I was so focused on being positive and also more worried about the post BMT complications. Hope that helps- and I will pray for you both, Jen

[jaxem]

jen
I’m a little fuzzy about your explanation. Dacogen brought his blasts to 1%, then he had inductive chemo to wipe out the marrow? Was it ablative chemo? Were they trying to wipe out all the marrow? How could the inductive chemo cause a rise in blasts from 1%?

[poppyshope]

Jack,
I spoke to the doctor and went over my notes from it, but this was right after my dad died and i was still in shock from how he died, just to be sure this is what he said… that my father was in a technical remission with 1%blasts from 4 rounds of Dacogen- he started with 5% blasts upon diagnosis but had what they called intermediate MDS . It was in early June we found out he had 1 % blasts, then he had a shortness of breath episode and I thought it was the heat and his nerves about moving up here with me (we were moving him in preparation for his BMT) I had his heart rate and blood pressure checked and his pressure was low and heartrate high, so I brought him to Sloan that night he stayed there 3 days and was they cultured him to make sure there was no infection and another bmb showed his blasts were up over 5, so they decided to try and kick it with what they called inductive chemo- three different chemos at a time ( he said them and at that point I was pretty upset and heard ara-c)- because they had a great donor Dr. Borachov really thought this would give him remission or partial to do it. He was sent home with a date of July 9th to come in to start the process, my dad collapsed at my house here on July 5th and was ambulanced to our local hospital and spent 12 days there to stabilize- then he was ambulanced down to mskkcc – My dad did two rounds of this inductive chemo in 90 days – he stayed at sloan the entire time not wanting to go home but to just see it through. on September 11th we found out that the chemo did no work and his blast count was a 50% he was realeased on 9/23 with a 3-6 month prognosis, and was back in our local hospital the next day after transfusions and platelets he was sent home on the 29th – he was on oxygen and spent everyday in the cancer center here with morning cbcs and platelet transfusions- we could not get in under control his platelets hovered at 10,000 through all of this but now it was between 1000-3000. By October 4th he was in a wheel chair and could not walk and we were told to get hospice- he refused and said he wanted to goto columbia presbyterian our appointment was for the 10th – on the 8th he had a bad day and was incoherent – the doctor said this could be it, and then on the 9th he was great- we went for a ride upstate had luch talked took video, and then came back and did our platelet transfusion, he saw his best friend that night, and went to bed. On the 10th he did not look so good but wanted to still make his appointment- he collapsed on the way down and the aide flagged down an ambulance while I held my dad. It was a Columbia presbyterian ambulance and he was rushed there- all he said was that he was tired and when we got there they had tried everything, but it was not to be- i held his hand till the end and talked to him until he died. The doctor said that it was probably the VRE in his liver that was a result of low counts – and that it was a septic shock, or low platelets and a brain bleed – that is what i think because he seemed to be having a stroke while I was holding him waiting for an ambulance. My father was out of the hospital for 11 days and for that i feel so bad i wish we had never done the 2nd round but he wanted to do it- he did not want a “what if” – he did get to see my son’s 7th birthday and saw my daughter’s 5th b-day we had a big party and he came and sat on the deck- he also celebrated his 63rd b-day on 10/01 – but there has been so much he has missed like my third child’s 1st birthday, my oldest’s first communion, teeth coming in and out- and just everything he wanted to live for- in fact his wake was on Grandparents day at my children’s school and he loved that day i had bought him a “poppy sweater” for it and he said – “that’s all I want is to be a Grandpa” I buried him in that sweater because of this awful disease. I just can’t believe he is gone some days, and I can’t believe there is not more done for the disease to be erradicated- some places think of it as pre-cancer- so it goes under the radar for funding- even insurance companies don’t all cover medicines for it i have read here. Sorry to go no and on- i am in that mad stage of grief I guess. Prayers to you and your wife, Jen

[MNladyslipper]

Thanks Jack and Jen for the info.
We got news that they are going to be treating him with Ara-c and idarubencin at Fairview. We go there on Monday. It will be inpatient therapy. They want to get the blasts down and go ahead with the transplant. So, Jack I will look for you at the Hope Lodge. Jen, my husband is 59 and says the same thing about being a grandpa. He has worked his whole life to be able to retire and enjoy being “Papa.” I guess there is a lesson to be learned there. Thanks

[jaxem]

Jen
that’s quite a sad story about your dad. I feel so sorry for your loss. They say there’s really no difference between MDS & leukemia even with the 20% blast number. MDS is a cancer, let’s face it. Thanks for the moving story about a big part of your life.

[poppyshope]

Bev and Barry- Good luck to you tomorrow! May God Bless you and watch over you along your journey to a cure… you are in my thoughts and prayers, Jen

[MNladyslipper]

Well, we are home again. We went to Fairview, but Barry has an infection, so he is on antibiotics and will return next Monday to start treatment. He will be on Ara-C and Idarubecin then recovery before a biopsy at 14 days. The hope is his marrow will be empty. Then two weeks to allow his counts to recover and another biopsy at day 28. The hope is his counts will be recovering and his blasts will be done so we can proceed with the transplant. All of this will be as an inpatient. I will be staying at the Hope Lodge. It is very nice, we stayed there last night instead of driving home last night. We plan to drive up Sunday afternoon and settle in, before Barry checks in on Monday. Thanks for the thoughts and prayers.
Bev

[jaxem]

Hi, Bev
Sorry I missed you at the Lodge. Been here since 6/30 & still here. We’re still battling a MRSA/fungus infection but will know by 7/31 if we’re a go for the NK cell procedure. My wife seems to be getting stronger. It’s been tough every step of the way but she’s tough. Ask around for Jack from NJ. Although I see new people every day, someone should point me out. Good luck with stemming the infection. We’re going through it & they seem to know what they’re doing. You don’t want to put anyone through it even the “mini-transplant” if they’re not 100% healthy.

[MNladyslipper]

We have started chemo. Barry is getting ARC-C for seven days continuously and Idarubecin for 3 days. Today is day 2, we will do a bmb on day 14. He is inpatient for 28 days and I am staying at the Hope Lodge. So far I have been spending 12 hours a day at the hospital, but hopefully that will abate a little as we settle into a routine. I will ask around for you Jack. We are praying that we only need the one round of chemo and then can go right in to the SCT. Oh, he is on an antifungal medication and they are doing cultures to try to determine what it is for sure. They said we probably won’t have any side effects until weeks two and three. BEv

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