My father is getting a stem cell transplant, any feedback on if this will work ?

Nathalie · Dec 14, 2005

Oh my goodness!!! This is like Deja vu all over again for me. It is still hard for me to talk about this, but I feel like I have to share my story with you. Four years ago, my brother of 14 years old was diagnosed with the same cancer as your father. This is a very tricky and hard cancer to control. The same thing as your dad happened to him. He just kept relapsing despite all the treatments they were giving him. He was eventually diagnosed with Leukemia.Our last resort was also a stem cell/ bone marrow transplant. I think the hospital give them the same equivalence. Well, I gave my brother my stem cells. I would do it all over again!!! It just seem like a natural thing to do. My brother came home for 60 days and spent the last 6 days of his life in the hospital. They say that it wasnt his cancer that killed him but all the tumors that developed in his body. As far as we're concerned, the transplant worked. Have they found a donor for your father? All I can tell you is to spend all of your spare time with your father, and God forbid something should happen to him ( I will pray all goes well for him), just know that he would be in a better place. That is what keeps me and my family going everyday. Knowing that where my brother is, he is not suffering. We also know that we now have an angel watching over us. If you dont mind letting me know when your father will have his transplant, I will tell my family to keep him in their prayers. DO NOT underestimate the power of prayers. There were many times when my brother shouldnt have made it through the night and so many people would pray for him and he would wake up in the morning. All I can say is spend time with him and PRAY!!! Encourage your father to fight. Every chance you have, tell him you love him, hold his hand, hug him!!! I am sure your father will make it. Good luck to your father and your family and God bless all of you. I will keep you in my prayers.

Also, from what you said your father's doctor said, your father has 50/50 chance of surviving with this procesure. My brother only had about 5% chance at surviving. Im sure it will be fine

Chris2002 · Dec 15, 2005

Nathalie,

Thanks for the response. My father actually used himself as a donor for the transplant. The cancer was not in his bones this time around and he was able to harvest his own. They did that about 2 wks ago. Yesterday, he had the transplant, which is almost exactly like a blood transfusion. I talked to him today and he sounds ok. Leukemia is a risk I know my dad has. I heard him mention. So, I dont know. I do pray everyday for him. So, we'll see. I dont think of the future, I just take this day by day. Cause, as you know, with cancer, you just cant begin to predict what cancer will do. But, I do appreciate the feedback. My dad is very positive and he isnt ready to give up. He has recovered very quickly from all this so far. So, I have a little bit of hope. I'm sorry about your brother. Cancer is an awful, awful disease. I never thought it would be part of my life, that's for sure. I am trying to get into the nursing program at my local comm college. So that news that I am trying to so something with my life, especially something as honorable as nursing makes him very happy. I told him my NLN scores and he was so proud. So that keeps me going.... .

ohiomom · Dec 18, 2005

Nathalie,
Thanks for the response. My father actually used himself as a donor for the transplant. The cancer was not in his bones this time around and he was able to harvest his own. They did that about 2 wks ago. Yesterday, he had the transplant, which is almost exactly like a blood transfusion. I talked to him today and he sounds ok. Leukemia is a risk I know my dad has. I heard him mention. So, I dont know. I do pray everyday for him. So, we'll see. I dont think of the future, I just take this day by day. Cause, as you know, with cancer, you just cant begin to predict what cancer will do. But, I do appreciate the feedback. My dad is very positive and he isnt ready to give up. He has recovered very quickly from all this so far. So, I have a little bit of hope. I'm sorry about your brother. Cancer is an awful, awful disease. I never thought it would be part of my life, that's for sure. I am trying to get into the nursing program at my local comm college. So that news that I am trying to so something with my life, especially something as honorable as nursing makes him very happy. I told him my NLN scores and he was so proud. So that keeps me going.... .

At my facility, it seems like the docs tell all the pt's it's a 50/50 chance...unless they have really bad disease. From what I have seen, in the few months that I've worked BMT is that pt's who get auto's do much much better than allo transplants. They don't get nearly as bad complications as the allo's since they are getting their own cells. So, how long total is your dad going to be in the hospital? The typical stay for an auto transplant is a total of 21 days...they come in at day -8 then are usually discharged by day +14. Hope it goes well

Nathalie · Dec 21, 2005

How is your father doing? Did everything go ok? I agree that the process is like a blood transfusion. When people ask me what its like, that's what I tell them. Please give us an update. :)

Nesher, BSN, RN · Dec 22, 2005

To be honest, a weeks recovery isn't reality based. A lot of folks are able to be outpatient for the entire transplant, many because of mucositis, pain, inability to eat, diarrhea, nausea - will have to be hospitalized until those issues settle down. They might need TPN, a PCA and all their medications given IV until they can tolerate oral again. The way that transplants work is this - your father would have been given some conditioning - which depending on the protocol the docs are follwoing is usually a combination of chemo and or TBI (total body irradiation). This will kill his immune system ( unless he had a nonmyloabative condtioning regimen) and the idea is that by giving him back his own stem cells they will race along to the areas in the marrow that are now open and take up residence. Your fathers counts will first go to zero or close to it - he will be at the greatest risk for infection at that time - however because his immune system is gone he will be a risk for quite a while. All his immunities are wiped out - so he will be given antiviral, antifungal and antibioitcs for quite awhile. In the mean time hopefully his counts will again rise. During this time frame he will need to be monitored closely - may need transfusions of RBC's or platelets. The time from trasplant to the counts coming in varies, but is usually something we look for at day 10-14 with an auto. (day 0 is the day of transplant - counting upward)

As far as 50-50 - I've transplanted a guy with a 1% chance of survival - he's fine.

Your father needs to stay optimsitic, and up - it helps!

Chris2002 · Dec 22, 2005

I do want to thank everyone for the feedback. My father is getting out of the hospital possibly a day or 2 before Christmas. But, it could be a day or 2 after. I dont know, the Dr said he is doing well. His counts are going back up. So, he is almost done. All he wants to do is come home. It has been very hard on everyone. We have a make an hour drive to the South side of Chicago (Univ of Chicago) to visit. This past Sunday he looked horrible, bald, bloated and exhausted. He also had the worse hiccups. They were causing him pain, which I guess is a side effect from the chemo.

He is pretty delusional and really not making much sense this past week. I assume it is due to the pain meds he getting. But, it just makes it worse on all of us. He is going on and on about stuff that doesn't make sense. Crazy money making ideas and putting cameras in trees ???!!! We dont know what to make of all of it. I attribute it to the heavy meds. But, it still difficult for all of us. I do want to thank Nesher for the info. Everything you commented on is EXACTLY what he is going thru. If you have any more info regarding his bizarre ramblings, I would interested to know what that is all about. Hopefully, he will get out before Christmas, but if he doesn't, I am prepared to go the hospital. I just know it will really, really bum him out. I do want to thank everyone for all the feedback. Please keep it coming, I'll do my best to give updates...... Chris

Nesher, BSN, RN · Dec 22, 2005

The combination of narcotics to help control the pain and the sedating effects of nausea medication can often cause the "ramblings" you mentioned. Is someone staying with him? He might not be safe - as in he could forget he is hooked up to an IV - we often get someone to sit with a person who isn't quite right in the mind. It is temporary usually - if they can reduce or change some of the nausea medications or even change the narcotic to something else perhaps Fentanyl - that might help. The problem is of course he has serious needs for these meds and it would be cruel to just stop them without replacing them. Maybe he is getting stuff around the clock and no longer needs it that often.

Please don't rely on him getting out a "certain" date! Docs love to give false hope that way and then everyone is so disappointed when it doesn't happen. Life as a transplant pt is truely a "one day at a time" expereince - often it is one minute at a time. He has a lot of hurdles to overcome to get to that point - and belive me it is WORSE ( on folks mental state) if they have to be readmitted because they weren't quite ready. He needs to be able to eat again and get in a fair number of the calories he needs - he will need to drink at least 3 liters a day - most of our pts get IVF at home - I assume he has a caregiver? He will need to be able to take his medications with no nausea or diarrhea. Speaking of his caregiver - are they ready to take him home? Are they capable of caring for his central line - changing the dressing, flushing, giving medications through it? Have they been taught about food safety and food preparation? DO they undertand his medications - and the importance of them? Are they familar with the clinic he will go to? IS the house clean and spotless? Caring for a transplant pt is no simple chore - it is reasonably complex and requires someone who is diligent regarding prevention of infection. Being paranoid helps. He needs to avoid crowds and obviously sick people.

Christmas in the hospital isn't as bad as you might think - and you can be with him.

He will continue to look horrid by the way. Just remember to look beyond the appearance and realize he is the same person underneath.

I guess I have gone on enough - hope it helps.

Hiccups caused by cytoxan are treatable - I hope they gave him something?

nursemary9, BSN, RN · Dec 26, 2005

Hi

I just now noticed this thread.

I have worked Hem/Onc for years and for a time worked on a transplant unit.

I will keep your family in my prayers.

I hope you will keep us informed on your dad's status.

Mary Ann

alexlynk · Dec 26, 2005

Its hard to say with AML, along with many other forms of...

I dont like the 50/50 estimate, nor any other estimates, because each person is an individual and whatever happens is 100% for him/her. We had patients stay in our hospital for months, some receiving over 4 transplants (yeah), others walked out quite healthy after only one.

As far as prayers go, they are a must, they are not a game, God is very real and he answers those who call on him, I have seen it, been there, witnessed it.

Finally: I hope your father recovers well, I know its much harder for much older folks. Considering how many people are praying for him, I'm sure that divine provision will reach him one way or another! Take care!

missy2b · Jan 29, 2006

Wow, Nesher did a great job of describing what goes on! Way to go!

Also to be avoided are areas of construction and remodeling. There are ungodly things that can be stirred up and inhaled.

Eating and feeding can be expensive and precarious. Often our pts take a bite or 2 and throw things away. It can take months for the metallic taste to go away. Not to mention that the pt needs to be taking things in individual containers as much as possible when he is neuropenic.

Wash hands, wear masks (not the weenie paper ones either!), walk as much as possible, eat protein, drink water, milk, juices, supplements. . .

No smoking, no kids, no sick people, no water on the CVL or accessed port

. . .You know the drill.

Good post!