[poppyshope]

Jack,
Good luck to you and your wife and I am sorry the other treatments did not do what you had hoped. I will keep you and your wife in my prayers. Keep those calls from the grankids coming I know that when my dad was doing inductive chemo we had a board with my kids pics and even one of my dog who poppy loved! They made him artwork and tapes with songs… grandkids make fighting on easier! Again, take care, Jen
ps where are you doing the Clofarabine? NYPresbyterian?

[poppyshope]

Rose,
I can’t believe it I was on to check on you and Zeke and hear of your sad news. I am so sorry for your loss, may God keep you in his care at this time, Jen

[poppyshope]

Zeke, I was on to check on how you and dad were doing and saw the horrible news. I am so sorry for your loss and will pray for you and that your good memories will help you to come out the other side of the horrendous grief. I am not too far ahead of you on this road and know how tough it is- let us know if you need to talk/email. God bless you, Jen

[poppyshope]

Has anyone used the term refractory? At the end of my dad’s inductive chemo he needed platelets daily, and they were worried he would or had become refractory. They gave him the platelets and took a manual count one hour later to see if his body was simply not taking them or just going through them that fast (24hours ). I would askwhat they are thinking. Also, being my dad’s child I held 50% of his DNA and they thought that if he had become refractory that my plateletes he may not reject…just a thought and something we looked into. He was not refractory afterall, but it was very scary till the transfusions took…I had asked at what point did a person stop accepting transfusions, and they could not give me an answer since everyone is different, but when he was going for the transplant it was important to try and transfuse only when necessary, that meant when his platelets were under 10,000 and hemo was under 8- scary counts. After the transplant was no longer an option (dad did not go into remission) they transfused almost daily, and needed to since the inductive chemo did such a number on his counts. Hope this helps- will pray for you – Jen
(refractory means there is no response)

[poppyshope]

Jack- I meant that the liver filters the chemo and takes a hit…after induction chemo my dad had actual lesions on his liver from the process. As for the VRE that happens many times – the normal bacteria in our bodies actually becomes dangerous to those with low immunity, like when the blood counts are supressed by chemo. That also happened to my dad, and that combo was what they think led to his liver bleeding out or infection taking over his body. I hope this explains it better. Jen

[poppyshope]

Check the liver if there is anything going on there… I was told dacogen is processed through the liver and can put a toll on it. It is also an organ that bleeds a lot was what i was told as well. Also, many times intestinal bacteria -VRE- can plant there making an infection site, this is what I remember but I am in no way a doctor.-jen

[poppyshope]

No they did not type it wrond, but it is very important that he get irradiated screened and properly typed blood, so that he does not build up antibodies. Many times local facilities are not capable of these types of transfusions it they do not have a large blood bank or are not near one. When my dad was at sloane kettering they could give him blood in an hour, but when he got trasfusions locally they had to be brought down from the red cross by taxi all the way from Rockchester NY-6-8 hour drive what an ordeal! Platelettes were not a problem but they would not transfuse them or release platelettes for transfusion till after 2pm when the OR’s were done even when his count was at 1,000. I know it is an hour drive but get books on CD and enjoy it… because it sounds like Mayo is a better call and a center of excellence too! As long as they type it and do it correctly this should not hurt chances of transplant, as long at the antibodies are not so many that he becomes refractory to transfusions. Good luck will keep you in my prayers tomorrow on Palm Sunday- Jen

[poppyshope]

Good for you Bev, I went to your site and what a wonderful tribute to your friends and family. I used to tell my dad all the time that although this was an awful disease – we both had the time to say everything- I guess that was the one gift in all of this the time to focus on letting the person you love know what they mean – instead of having words unsaid. Anyway, if postive reflections can cure you and Barry are on the way because that guest book is beautiful. Keep up the optimism it is always good to be someones cheerleader! In my thoughts and prayers….jen

[poppyshope]

Welcome, and know that there is definate support here. Optimistic is good and informed is best- so you have come to the right place. From what I understand of this disease a BMT is the only way to a cure, and since this disease is different for everyone if you have the chance it is the way to go- (i think anyway). Your mom is young enough and with a twin sister she has her match so good luck to you and we will keep you in our prayers! BTW- would you mind telling us how was your mom’s MDS diagnosis came to be and where she is doing her transplant? Again, thoughts and prayers to you and mom, and try and stay optimistic, Jen

[poppyshope]

Jack, I am sorry that your platlets are low , but it seems that you are tolerating it and a lot of times they don’t transfuse if you are not under 10,000 or of course if there is bleeding. I have read that Pineapple can help with Platelets- check with the doc but worth a try. Please don’t leave here your posts are invaluable!- Jen

[poppyshope]

Opps sorry to post twice but I also wanted to mention that with any meds it can throw off the body’s rythm, for lack of a better word, and fungi, yeasts,etc can grow- I think this could sometimes be the case- for goodness sake you take a antibiotic for strep you can get a yeast infection…

[poppyshope]

What about a fungal infection- if it is that it needs to be dermined to be treated effectively. I also was posting on luann’s site and there was a mass in my father’s lung that had them all at Sloan Kettering thinking lung cancer and it was also so involved it was PET positive. This was before mds dx, and even after they removed the lobe he still developed a spot that again was a fungal infection that they treated with vorconizole(sp?). Hope this helps-jen

[poppyshope]

Katie,
When I saw there was a post at My Dad- I felt so sorry for you, and as much as I looked for them – I knew that no news was good news. I am not too far along this road ahead of you, and I know that nothing said or unsaid makes this “better”, so I will tell you how sorry I am and how me and my children will pray for you and your dad. He is at peace and that is what allows this to be somewhat bearable. 170 days in the Hospital is a valiant fight- be proud of that kind of strength. I know I had a hard time because the last months of my dad’s life were spent in the hospital, but looking back now he wanted to stay and try everything and fight, and the conversations we had while he was there late at night just me and him are what I cherish now- just us. when it is time you will recall times like this and cherish them too…this is my hope for you,your grief and healing. Your posts here are a tribute to “your dad” and your love for him, and to you, his daughter, who fought right beside him.
With Sympathy,
Jen

[poppyshope]

Also LuAnn, I remember that the reason his lung mass showed up positive on the PET scan was because the infection was so large (large enough to show up as a mass-because remember this is prior to MDS) it reacted with the gluclose that is given during the test that highlights cancer…when an infection is like this it will show a positive result. They were pretty sure it was lung cancer that is why no biopsy, but when the second spot (like a mass/pnuemonia) showed after the MDS diagnosis and after Dacogen they did biopsy and bronchoscopy, because they were certain it wasn’t cancer but this BOOP (fungal lung infection) and it was again PET positive.
Also, they loaded my dad with platlets and had a transfusion on standby, because counts were down from dacogen, and either procedure will cause bleeding. I hope it is just an infection!-jen

[poppyshope]

LuAnn –
If you don’t mind me asking what hospital are you being treated in – i see you are from NY , as am I. If you are close to the city there are centers for excelence there- Memorial Sloan Kettering, Columbia Presbyterian, and Mt Sinai i think as well. A biopsy is risky with dealing with lung cancer- I remember Dr Rizk (at Sloan a thorastic sergeon) decided to just remove the lobe since he had more than adequate lung use, and it seemed contained (nothing in the media steinum was involved and no lymph nodes); rather than risk it spreading with a biopsy. Is a broncoscopy a possibility- especially since it was in the upper lobe. Also, there are 3 separate lobes on the right so to lose one not a biggie- the left side they are smaller due to the room for the heart. I remember them saying that that was the lung to have anything wrong with it if you had something wrong. I was so worried and it wasn’t lung cancer at all – in fact that led us to MDS dx. Try to stay calm, and get a second opinion always we did another hospital was going to biopsy and we went to sloan and got our second opinion first. Take Care will pray for you and dad- Jen

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