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03-16-2012, 10:28 AM
 Anyone had any friend/family member undergo bone marrow transplant? (Updated: Apr 7) |
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Multi-Quote| 03-16-2012, 10:28 AM | |
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July 16: 2nd round of chemo starts Wednesday, July 18 and will go on for 4 days. She will be hospitalized for this round of chemo. It will knock out a part of her immune system.
We have a friend of ours who have loaned us her house to use for the next few months. We will be taking her there and limiting her exposure to people after this round of chemo to avoid any potential to infection...
She will be out of hospital for 9 days after this round of chemo and will be re-admitted for the next set of chemo on July 31st. Her transplant is currently scheduled for August 9th. She will be in the hospital for around 8 weeks (August, September) and then for 2 months at our friends place after that (October, November).
July 20: Third day in the hospital today. She has gotten almost all side effects/reactions possible over the last two days. Today it has been better so far - probably because of additional pre-meds she has been getting...or/and because her immune system is getting shut down. 5 more hours to go. She's gonna get another stronger dose tomorrow and is scheduled to be discharged on Sunday.
July 24: She was discharged yesterday. She has bounced back pretty well. One cannot tell that she went through 4 days of near-hell looking at her today. She has doctor's appt ever other day until Monday. She gets re-admitted next Tuesday for next sets of chemo, transplant and recovery. (I wonder if anyone is checking this thread....)
July 25: Just got back from the ER around 11:30PM. She had sever pain in the head earlier in the afternoon that lasted for around 15 minutes and it happened again in the evening. The doctor was concerned since and had us get her checked out at the ER. Back home, they did not find anything out of the ordinary.....probably the remnant chemo and the immune system still fighting in there. Hopefully today is an event-free day...
July 29: Last few days have been pretty event free. She has adjusted very well to the apartment she's staying in. Surprising how quickly she has jumped back. Had a follow-up appt on Friday and all the vitals are looking ok. She gets re-admitted on Wednesday...hoping the next 2 days are as good as the last two.
Aug 3: She was re-admitted on Wednesday (Aug 1). Has had 3 days of chemo so far (different drug this time). Doing a lot better with this one. No side effects yet. Has 3 more days of chemo with 3 different drugs by the end of which her immune system should be fully shutdown. So far so good...but getting pretty nervous about the upcoming days. Next Thursday in particular gives me the chills when both the piglets would be in the hospital. Just trying to stay strong for the next 3 weeks in particular
Aug 9: She has been doing pretty ok so far. Has been having some server reactions and symptoms associated with low counts...but has been holding up pretty well. Is active and playful when not drowsy by the benadryls.
Today is the harvest/transplant day. The brother piglet was admitted at 6:00 AM. Was done and ready to be discharged at 11:30 AM. They need to now process the marrow, filter out the red cells, extract the stem cells, etc. Transplant will happen another 6 hours from now.
Update 2: Still waiting on the doctor to come see us. She won't be getting the stem cells today. It will most likely be tomorrow morning when she gets it. They suspect some reactions so want to do it in the morning when everyone's around. uggh.
Aug 10: The doctors were pretty nervous about some of the things (will leave aside the details) and had done a lot of prep in case of any reactions from the transfusion. However, they did not have to use any of the stuff that they had on standby. As of today, she has received her brother's stem cells!
Aug 13: Things are very good so far. The hair is slowly starting to fall. She will probably lose all her hair in the next week. All the counts/stats check out fine. The wait continues on...for the next 2-3 weeks.
Aug 18:
Aug 24:
She's been doing pretty good so far. She's lost almost all her hair but she's not conscious about it. In fact she likes the soft head of hair. No complains of pain, no infection, still eating/drinking. We's on a wait mode now...tick tock tick tock...for the engraftment and the counts to start going up...
Aug 28:
Her counts are really starting to go up. They are nudging higher every passing day. No signs of GVH so far either. Doc said if she continues with the current progress, she may be discharged by end of next week....or earlier! They are already starting to prep her for discharge. She currently has anywhere between 5 and 8 tubes of various meds/fluids connected to her at all times. They are slowly weaning her down on them and switching to oral med in prep to say bye bye!
Sept 1:
Almost there. All her meds are oral now....and it's a LOT! Around 8 meds in the morning, 3 in the afternoon and 3 at night...and most of them will continue for a few weeks/months. Her key counts are in the normal range. Most likely will be discharged on Tuesday or Wednesday. Looking forward to getting out of this place...but at the same time apprehensive to leave this protective environment and be on our own.
Sept 5:
Yay! Discharged!! Now at an apartment close to the hospital that our friend lent us. Will need to be here for another 2-3 months, while she regains her immunity, frequency of transfusions, clinic visits etc. wean off.
Sept 8:
Back at the hospital. Had a fever yesterday night. Called doc, went to ER, had her blood cultures drawn, got admitted...Will be here for the next 2-3 days as long as they don't find anything in her blood cultures...
Sept 10:
Uggh. Had a fever early morning today that lasted an hour. An hour of fever that translates to another couple of days in the hospital. Well, at least the good thing is that we were still in the hospital. Would have sucked 100x more if we had gone home and the fever had spiked later today. Oh well, have to stay under observation at least until Wednesday. Still no sign of any infection/etc (Which kinda sucks...because we don't know what's causing the intermittent fever).
Sept 12:
Still at the hospital. The docs still don't know what caused the fevers so they are nervous about it. She has been afebrile for the last 24 hours. If this continues for the next 24 hours, we may get to go home.....
Sept 13:
Back to the apartment again! Hoping to stay here here for the next couple of months without having to see that hospital again. Clinic visits will most likely be three times a week for the next couple of weeks and then taper down to twice a week. Fingers crossed....
Nov 28:
She has been home for little over a month now and has been doing really good. Her counts have been very stable and looking great. She still is on a bunch of meds and will most likely continue on them for another few months. We still need to limit her exposure to people/germs, take all the precautions (mask outside the house, etc.).
Things have been crazy though...crazy at work, crazy at home, no place in between. Need a break soon!
Feb 17:
Her blood type finally changed this week...from her to her brother's! It was a huge milestone that we have been waiting on for a while now. It was making me nervous for a few weeks now - the counts sliding and the blood type switchover being overdue. But the counts regained over the last couple of weeks and have stayed stable.
Apr 5:
Back in the hospital again
2nd day here now. Was admitted because of stomach flu symptoms getting worse but it's turning out to be a lot more complicated than that. Pretty concerned about her. Ugggggggh.
Apr 7:
Back home after a 4 day stay. Was quite a scary experience, especially the way her health deteriorated from normal to really bad in a matter of hours. If you see her now, you wouldn't say she was the way she was a couple of days back....
We have a friend of ours who have loaned us her house to use for the next few months. We will be taking her there and limiting her exposure to people after this round of chemo to avoid any potential to infection...
She will be out of hospital for 9 days after this round of chemo and will be re-admitted for the next set of chemo on July 31st. Her transplant is currently scheduled for August 9th. She will be in the hospital for around 8 weeks (August, September) and then for 2 months at our friends place after that (October, November).
July 20: Third day in the hospital today. She has gotten almost all side effects/reactions possible over the last two days. Today it has been better so far - probably because of additional pre-meds she has been getting...or/and because her immune system is getting shut down. 5 more hours to go. She's gonna get another stronger dose tomorrow and is scheduled to be discharged on Sunday.
July 24: She was discharged yesterday. She has bounced back pretty well. One cannot tell that she went through 4 days of near-hell looking at her today. She has doctor's appt ever other day until Monday. She gets re-admitted next Tuesday for next sets of chemo, transplant and recovery. (I wonder if anyone is checking this thread....)
July 25: Just got back from the ER around 11:30PM. She had sever pain in the head earlier in the afternoon that lasted for around 15 minutes and it happened again in the evening. The doctor was concerned since and had us get her checked out at the ER. Back home, they did not find anything out of the ordinary.....probably the remnant chemo and the immune system still fighting in there. Hopefully today is an event-free day...
July 29: Last few days have been pretty event free. She has adjusted very well to the apartment she's staying in. Surprising how quickly she has jumped back. Had a follow-up appt on Friday and all the vitals are looking ok. She gets re-admitted on Wednesday...hoping the next 2 days are as good as the last two.
Aug 3: She was re-admitted on Wednesday (Aug 1). Has had 3 days of chemo so far (different drug this time). Doing a lot better with this one. No side effects yet. Has 3 more days of chemo with 3 different drugs by the end of which her immune system should be fully shutdown. So far so good...but getting pretty nervous about the upcoming days. Next Thursday in particular gives me the chills when both the piglets would be in the hospital. Just trying to stay strong for the next 3 weeks in particular
Aug 9: She has been doing pretty ok so far. Has been having some server reactions and symptoms associated with low counts...but has been holding up pretty well. Is active and playful when not drowsy by the benadryls.
Today is the harvest/transplant day. The brother piglet was admitted at 6:00 AM. Was done and ready to be discharged at 11:30 AM. They need to now process the marrow, filter out the red cells, extract the stem cells, etc. Transplant will happen another 6 hours from now.
Update 2: Still waiting on the doctor to come see us. She won't be getting the stem cells today. It will most likely be tomorrow morning when she gets it. They suspect some reactions so want to do it in the morning when everyone's around. uggh.
Aug 10: The doctors were pretty nervous about some of the things (will leave aside the details) and had done a lot of prep in case of any reactions from the transfusion. However, they did not have to use any of the stuff that they had on standby. As of today, she has received her brother's stem cells!
Aug 13: Things are very good so far. The hair is slowly starting to fall. She will probably lose all her hair in the next week. All the counts/stats check out fine. The wait continues on...for the next 2-3 weeks.
Aug 18:
Aug 24:
She's been doing pretty good so far. She's lost almost all her hair but she's not conscious about it. In fact she likes the soft head of hair. No complains of pain, no infection, still eating/drinking. We's on a wait mode now...tick tock tick tock...for the engraftment and the counts to start going up...
Aug 28:
Her counts are really starting to go up. They are nudging higher every passing day. No signs of GVH so far either. Doc said if she continues with the current progress, she may be discharged by end of next week....or earlier! They are already starting to prep her for discharge. She currently has anywhere between 5 and 8 tubes of various meds/fluids connected to her at all times. They are slowly weaning her down on them and switching to oral med in prep to say bye bye!
Sept 1:
Almost there. All her meds are oral now....and it's a LOT! Around 8 meds in the morning, 3 in the afternoon and 3 at night...and most of them will continue for a few weeks/months. Her key counts are in the normal range. Most likely will be discharged on Tuesday or Wednesday. Looking forward to getting out of this place...but at the same time apprehensive to leave this protective environment and be on our own.
Sept 5:
Yay! Discharged!! Now at an apartment close to the hospital that our friend lent us. Will need to be here for another 2-3 months, while she regains her immunity, frequency of transfusions, clinic visits etc. wean off.
Sept 8:
Back at the hospital. Had a fever yesterday night. Called doc, went to ER, had her blood cultures drawn, got admitted...Will be here for the next 2-3 days as long as they don't find anything in her blood cultures...
Sept 10:
Uggh. Had a fever early morning today that lasted an hour. An hour of fever that translates to another couple of days in the hospital. Well, at least the good thing is that we were still in the hospital. Would have sucked 100x more if we had gone home and the fever had spiked later today. Oh well, have to stay under observation at least until Wednesday. Still no sign of any infection/etc (Which kinda sucks...because we don't know what's causing the intermittent fever).
Sept 12:
Still at the hospital. The docs still don't know what caused the fevers so they are nervous about it. She has been afebrile for the last 24 hours. If this continues for the next 24 hours, we may get to go home.....
Sept 13:
Back to the apartment again! Hoping to stay here here for the next couple of months without having to see that hospital again. Clinic visits will most likely be three times a week for the next couple of weeks and then taper down to twice a week. Fingers crossed....
Nov 28:
She has been home for little over a month now and has been doing really good. Her counts have been very stable and looking great. She still is on a bunch of meds and will most likely continue on them for another few months. We still need to limit her exposure to people/germs, take all the precautions (mask outside the house, etc.).
Things have been crazy though...crazy at work, crazy at home, no place in between. Need a break soon!
Feb 17:
Her blood type finally changed this week...from her to her brother's! It was a huge milestone that we have been waiting on for a while now. It was making me nervous for a few weeks now - the counts sliding and the blood type switchover being overdue. But the counts regained over the last couple of weeks and have stayed stable.
Apr 5:
Back in the hospital again
2nd day here now. Was admitted because of stomach flu symptoms getting worse but it's turning out to be a lot more complicated than that. Pretty concerned about her. Ugggggggh.Apr 7:
Back home after a 4 day stay. Was quite a scary experience, especially the way her health deteriorated from normal to really bad in a matter of hours. If you see her now, you wouldn't say she was the way she was a couple of days back....
Last edited by Pig; 04-07-2013 at 08:08 PM..
#3
03-16-2012, 10:32 AM
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Yes. You know those close family friends that you call "Aunt" or "Uncle"? Well my "Aunt" had to go to the Mayo Clinic for 2 separate bone marrow transplants. I know it was painful for her and involved chemo, but she came through pretty well. It was a rare disease that most people die from, but she did great. They had to remove all of her marrow and than transplant new marrow. It was tough, painful, and expensive for her, but she lived. You'd never know she had it done today, and she just welcomed her first grand kid in to the world.
The constitutions of most of our States and of the United States assert, that all power is inherent in the people; that they may exercise it by themselves, in all cases to which they think themselves competent, or they may act by representatives, freely and equally chosen; that it is their right and duty to be at all times armed; that they are entitled to freedom of person, freedom of religion, freedom of property, and freedom of the press. -Thomas Jefferson, June 5, 1824
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#4
03-16-2012, 10:52 AM
 How old was she when she went through it? And how many years since? |
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#5
03-16-2012, 10:57 AM
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My uncle was diagnosed with Lymphoma. (about 45 years old) He had tumors removed, chemo and a bone marrow transplant. I know it was painful but I'm happy to say he has been cancer free for over 10 years. He had this done at Sloan Kettering.
"And in the end, the love you take is equal to the love you make."
~The Beatles 1969
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It's like looking at one of those wrinkly hot dogs that have been sitting inside that machine at the 7-11 for five or six years
#6
03-16-2012, 10:58 AM
Last edited by chewspam; 03-16-2012 at 12:19 PM.. |
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#7
03-16-2012, 11:28 AM
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#8
03-16-2012, 12:34 PM
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I hope pig is not in need of a bone marrow transplant.
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You can go to work after you finish baking the cupcakes for me. 
#9
03-16-2012, 02:52 PM
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A friend had it when she was 15. It was about 12 years ago. She was only given a really low chance of surviving. She is still here and healthy.
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#10
03-16-2012, 03:42 PM
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Not friends of family really (though one of my friend's fathers was one of my patients), but i'm a nurse on a BMT unit so I know quite a bit about them. Getting your own marrow back is one thing, getting marrow from a donor is totally different. They don't "take your marrow out" as some of said, they destroy is partially or completely with chemo and sometimes radiation. They put the stored or donated marrow back in through a central line. The procedure isn't painful, but some people have pain related to things like mouth sores, their disease process, or boney pain as the new marrow engrafts. Bone marrow biopsies are quite uncomfortable.
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#11
03-16-2012, 03:48 PM
Last edited by Pig; 03-16-2012 at 03:50 PM.. Reason: Automerged Doublepost |
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#12
03-16-2012, 05:31 PM
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My sister in law had it about 12 years ago. Hers was very different because they harvested her own stem cells. While this is the best, she had to do serious drugs to boost her stem cell production, go have blood taken, the stem cells removed and the rest given back to her thru a drip.
She was at stage 4 at diagnosis time with hodgkins lymphoma. She had many many rounds of chemo first, no other matches for marrow. When they had enough stem cells they put her in the hospital, almost killed her, then did the stem cell transplant with her own stem cellls. This was 10+ years ago and she's still fine. I'm sure you are asking for a not so fun reason. I wish you and yours the best. I encourage everyone to sign up for the bone marrow registry. I've been on it for around 20 years. Never been called yet, but they do update my info twice a year just in case I'm needed. I was there helping during the whole process because she and her husband had a business they were trying to keep open and had a 2 year old son. It was extremely hard on her but she was determined to suceed to watch her son grow up. If you want to pm questions that's fine with me. Thanks every day to all of you who help me spend so little!
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#13
03-16-2012, 05:42 PM
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#14
03-16-2012, 05:59 PM
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#15
03-16-2012, 06:09 PM
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You are very welcome. While it's hard, living is worth it! She's gotten to watch her son grow into a pre-teen, and be there for all those milestones.
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