[poppyshope]

Oh Jack, I am so sorry- I just emailed you the other day- I too was hoping that no news was good news. I will pray for you and your family- May god keep you in his care always, Jen

[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

[poppyshope]

My Father was at Sloan and they are a fabulous institution. My father also did two rounds of indutive chemo but he did not get a remission for his transplant. They did say the same thing about my dad and I was writing about it tonight so it is kind of fresh in my mind- can you call MD Anderson and have them give a phone consult by faxing your medical records? I did that with my dad and Sloan was very accomodating- how about St Jude Children’s hospital too- just a thought! My prayer go out to you to see you through this rough time-children are resiliant i am glad to hear he is running and playing- God Bless you, Jen

[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

[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

[poppyshope]

I am so sorry to hear of your loss. With deep sympathy and in my thoughts and prayers, Jen

[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

[poppyshope]

Good for you guys this is great news for you enjoy this success!!!! Prayers to you, Jen

[poppyshope]

Warren,
There is a Dr Estey- was at MD Anderson, now is at Fred Hutchinson, he is really great and will call you on the phone and do a consultation if you fax records. Also, what about Dr Eric Feldman at Columbia Presbyterian in NYC- after my dad had done everything that Sloan Kettering offered Dr Feldman was willing to see him and see what could be done- we were on our way to see him when my father passed away, but he did come down to the ER when we came in and was a very compassionate man. See what can be done and leave no stone unturned you don not always have to go there are phone consults and your doctor can also talk with the other experts on your behalf- they know that it is hard to travel with this disease… anyway, that is what hope is all about with this disease. My prayers are with you on this journey- jen

[poppyshope]

lucy – it really depends everyone is so different- if you don’t mind me asking where are you being treated? In NY there are a lot of great options. Also, are you taking anything yet, and when were you diagnosed? Jen

[poppyshope]

Jack tell your wife she is in the second grade’s intentions book for tomorrow’s mass (first Friday Catholic School) and they are all receiving communion for the first time with their school, so powerful St Martin’s prayers your way!!! The youngest is seven – great age- my oldest is 7- love that age! In my thoughts and prayers that easier times are ahead- jen

[poppyshope]

Hey there I saw this on your caringbridge site as well -it was nice of you to share here-thank you. Also, I was reading your journal and saw that Barry was having salad, please go over this with the doctor. My dad did not and could not have salad or any fruits that did not peel and they were even worrisome…this was due to germs on and in uncooked fruits and veggies. Hope this helps- jen

[poppyshope]

Cheryl,
I am so sorry for your loss, and feel so bad for you. I will keep you, and your family, in my thoughts and prayers, Jen

[poppyshope]

Good luck to you Neil, in my thoughts and prayers- Jen

[poppyshope]

Tom, I know for a fact that in three weeks they had a match for my father for a Bone Marrow Transplant. They also had, as back up if the donor opted out, a stem cell too. He was at Sloan Kettering in NYC, and they worked quickly- he just could not get into remission. Before he passed away we talked to the transplant team and they were saying how lucky he was to have found a donor and they did say it was because he was from Eastern European Descent- Good Luck- and we will all keep you and mom in our prayers…I will tell you I would try and get her to MD Anderson in TX or Dr. Estey in Seattle he was at MD Anderson- Jen

[Author]

Posts