I'm new on this board, been lurking around some of the others for a few months now. I'll briefly explain my situation. My boyfriend was diagnosed on oct 25th with AML with complex cytogenetics. He failed to achieve remission with round one of induction, but achieved it second time round with the FLAGIDA regieme. He had one consolidation at the start of jan and has just started conditioning for his transplant on the 17th. He's going through two days of cyclophosphamide and 3 days of twice daily TBI. His donor is his older brother.
Not sure why I'm here other than to hear some positive experiences and any advice anyone can give to help me help him through this. He is my world. He has coped with everything so well so far, I just feel so helpless all the time.
How did people find the TBI as this almost seems scarier than the transplant? And I'm already struggling with the barrier nursing two days in :(
With love Chip x
I didn't have TBI so I can't help you with that. I did have a transplant for AML over eight years ago and have done pretty well since. So, at least there's a bit of hope. You'll hear (read) a lot more over time here.
Let us know how we can help support you and your boyfriend.
I had a transplant 4+ years ago and am doing well. I did relapse last year but that's extremely unusual and I'm doing well now. The key is that transplants are tough but are well worth the fight. I also had 2 inductions to get into remission.
Gather information about the transplant. The more information you have the better prepared you'll be. Keep in mind though that there are a lot of things that can happen to him after the transplant but he may or may not have the same reactions. The key is to be ready to fight like hell.
Hi, thanks for both your replies. Can you remember how long after discharge it wa before you were ok to be left for longer periods of time in the house alone. I'm trying to work out how much time off work I'm likely to need. But I understand everyone is different. I've been told to expect that on some days he might not have the energy to get in the shower or make a cup of tea.
Good question. I wish it had a straightforward answer. I'm sure it doe but not from me.
I had my transplant in mid-June. By August I was about out of my mind having my wife around 24/7 and I called one of the boys and paid for him and his wife to fly out and get her out of the apartment and take her to places she wanted to see that were on my restricted list. At that time, I went to a couple of movies, went to eat and just enjoyed being alone for awhile.
Thing is I was cruising on Prednisone at the time and had boundless energy. By the time we came home the end of September, I was pretty much in a constant state of fatigue. My wife was allowed to stay home from work another week to help get me situated then she had to go back to work.
The thing is that infections and other little surprises can run up on transplant patients out of nowhere and take over pretty damned quickly. It really needs to be monitored. If you have to be back to work in less than the 100 days, you might want to see about getting a friend or relative to sit with him. Or home health care is another option. But for awhile, he will need to be attended.
It sounds tough but I've never known anyone who couldn't work it out. Well, one single friend did make it through on her own. I think she had an auto transplant though.
I was in the hospital for 6 weeks after my transplant which is longer than most people's experience. I was probably a month after that before she'd start going out for short period of time. I was fortunate to have family visit us often while we were in Seattle. I had my tranplant in May and we returned home in August. There were a few weeks when we didn't have visitors and she would normally venture out around my naps. The issue was my energy level and balance. It was never a problem but she was nervous to leave for a long period. She returned to work a few weeks after we got home.
Hi Chip, i am sorry to hear of your boyfriend. My son had a double u cord transplant for relapsed aml at atge 20. He had 9 sessions of TBI as part of his pretransplant conditioning. The sessions were only about 20 minutes long, not painful but after about the 3rd, my son started getting nauseated and would throw up on the way home from treatment. Make sure you have buckets or bags if you are outpatient for TBI. They may also opt to do testicular radiation due to the testicles being a sanctuary site for relapse. That is one thing you all need to know because it can have a huge long term effect on fertility as well as TBI can.
About 6 weeks after TBI my son was very fatigued. He later told me he was not prepared for the level of fatigue that transplant would bring but we were told it is very common when someone has radiation. I believe they call in somnolence syndrome. That lasted a couple of months. He also had GI effects with nausea and vomiting for several months. It took quite a few months before he was strong enough to be left alone for any length of time. You may need some help for awhile.
Wishing you the best on your upcoming journey.
Hi, one more note, about leaving him alone.
It is really all on an individual basis. If he is too weak to get himself from bed to chair, chair to bathroom, chair to kitchen, etc., without help, he will need someone there with him.
As I mentioned before, I worked 4 days a week throughout Nate's transplant. Nate came home on a Saturday, and I went to work on Monday. I worked 4 ten hour days, taking Wednesdays off to bring him to Boston for his appointments. Oh, and I was 6 months pregnant at the time, which added another obstacle.
Nate was never too weak to move around. I would get up at 5 and check his temp, leave for work around 5:30 and I left him with easy things to eat (muffins/cereal for breakfast, frozen dinners or I'd make sandwiches for lunch). I'd tell him to call me as soon as he got up, which was normally around 10. I would then remind him to take his temp and his meds. I;d then call every hour until I left work. And that was how we did it. If he was ever sick, I stayed home or came home from work if he needed me.
Like people have said, it is really on an individual basis so you guys will work out what needs he will have. Whatever happens, you guys will manage.
Regarding leaving him alone...It's a really hard thing to predict. In my case, I was out of the hospital on day +20 and felt fine to be alone immediately. In fact I was driving about a week out of the slammer. My Caregiver (mom) wasn't all that keen on this, but I felt safer than with her driving...no offense mom Others (knock on wood) have not been as fortunate. If he were to spike a fever, he would need to get to the hospital ASAP! Hope this helps.
My husband Nate (dx 12/22/10 with Pre B ALL at the age of 24) underwent a SCT from his brother 3/2/11. He had 4 days of twice daily TBI. Almost a year later and he is here, dealing with some long term GVHD side effects, but otherwise healthy and cancer free.
TBI was tough. He had very nauseous for months after. This doesnt happen to everyone, but did to him. So be prepared for him to feel really crappy for a long time with vomiting. The fatigue from TBI also lasts a very long time, so be ready for that. On a bright note, he'll probably end up with a pretty sweet tan
So the TBI process itself wasn't very exciting. I was there for one session (I had to work 4 days a week during his transplant so was not there every day) and the actually radiation lasts about 20 minutes. Basically, they'll cover him in blankets, get bhim geared up with gloves and a mask and wheel him down to radiation. From there he'll strip down to just shorts (or that's what Nate did) and he will go into this room and stand in this glass "enclosure" type thing, and just stand there until it's over. The radiation dept. at Mass General played music for him. After that, he'll get suited back up, get to his room, and immediately strip naked and get into the shower to wash off any germs. What sucked for Nate was that the first session was always at like 5:30 or 6 in the morning. Also, have him ask for zofran an hour BEFORE he goes down to each session. Some nurses give it afterwards, but it works a LOT better in preventing the nausea than treating it, and after 3 sessions and needing the puke bucket while standing in the radiation contraption, he decided to pre-treat for it and it did wonders.
Feel free to email me (email@example.com) or you can friend me on facebook (Lottie Richard) or just message me on here if you have any specific questions. These discussion boards are also a great place to ask questions and get feedback/support.
You two will get through it.
My brother in law also underwent a transplant in December of last year. He also had 3 days of TBI sessions and I know it was very hard. He fought CML and a pretty horrible stroke, but he is home now. He spent more than a month in the hospital after the transplant, but he made it. It is true that he did not experience lots of horrible side effects, except for fever that got him to the point where he wanted to give up.
He is home now and doing well, but he still feels tired all the time especially that he lost a lot of weight before and after the transplant. My sister leaves him alone for longer periods of time now, but she always has the neighbors/friends/relatives checking on him. She recently left him alone with their 4 years old daughter for half a day and he managed it pretty well, as she does not require as much attention as their 1 year old son who he cannot hold yet due to weakness and fatigue. He cannot drive and he is really not allowed to go to some places or meet lots of people, sometimes my sister isolates him from their 2 kids as well. It is really case by case, but you are going to manage it. Just don't lose hope.
From what I know, and also read on this board, the transplant is a very different experience for everyone. We really believed (based on an acquaintance's experience who kept in touch with my BIL after he left the hospital) that the transplant is going to be hell... it was hard, but not as he expected, at least that's what he says now. But it was time when family had to sit with him 24/7 in the hospital, taking turns day and night. Most of the time it was only my mom and my sister going back and forth from hospital to home, where 2 small kids were in need of care. Only two of them... and they made it. Most of the time my mom would come home after a sleepless night to take care of recently awaken babies. The hardest part was to find someone to look after the kids while they did the switch... and neighbors helped! We only helped for short periods as we live in different countries, but we used our vacations and everyone went to help.
Don't be afraid to ask family and friends for help and don't lose faith. I know it's hard, even though I had a "second hand" experience, so to say, but I know that where is love, faith and kindness, everything becomes possible.
Also, this Board helped us a lot, here I found the most wonderful people ready to send their prayers and good thoughts whenever needed.
Just fight and pray, everything is going to be fine.
Take care and God Bless You both. Prayers coming your way!
Hi everyone, thankyou all so much for your replies.
Thats given me a lot to think about, i guess i'll have to wait and see how he is.I've got support from my family and his parents to help us out. Unfortunetly, although imy work have been very supportive, i can't get much paid time off, which obviously limits what i can and can't do, i'm taking off as much unpaid as we can afford, the plan for now is 3 weeks after discharge and then 3 days every week after that, until a time when i can arrange something different. I think he has to go for outpatient appointments 3 times a week in the initial stages, at the hospital which is 2 hours driive from where we live , so i imagine i'll do 2 runs and his parents will do one per week.
So far we are on day 2 of radiation and he is feeling better than yesterday, def heard a perk in his voice when i phoned him, unfortuntely the wireless on the ward he is now on is rubbish, so we can't skype. He is telling me he is missing me though and this is the first time he has done this so early on in a stage of treatment, so i know it must be getting to him. I hope he remains strong. The nausea is less, but his skin has started to hurt.
Thankyou all again for helping me realise i am not alone through all this and helping to give me hope.
Happy Valentines Day
Hi. Sorry I have been meaning to update, but my life seems full of either work or sleep at the moment.
Things are good, he had the transplant on Friday, as planned, very boring, as planned lol. He's been very nauseous for about a week and virtually unable to keep anything down, until today. Just been speaking to him and today has sounded like a good day, he's not been sick and has eaten a decent amount of food, he sounds much perkier too. He did start with a bit of a temp, but the doctors jumped on it instantly and took cultures and started him on penicillin, which was a shock as in the past he's got to that temp and it's just been IV paracetamol and watch. Good though, suppose they have to be careful.
As everyone says, hopefully it stays boring!! Thanks.
Love Chip xx
Never apologize...caregivers are always the busiest during transplant...glad to hear everything is going smoothly so far...good that he is able to eat - that may change in the coming days...fevers are nevered watched during transplant...there will be lots of testing and swabbing and xrays and other things that will take place when a fever pops up...
I am sending good thoughts his way - from here in Ontario Canada! I will be hoping that things stay boring...
Nausea was a problem I did have after transplant. It goes away and can usually be dealt with, it's just a matter of finding the right med or giving it time. Nausea is one of those things that can rear its head at any time for quite awhile. A week isn't bad but I'm glad to learn he's getting back on the nutrition cart.
Please keep us posted as you have time.
Hi. He's kinda gone off his food again, I managed to tempt him with a cinnamon swirl earlier. I think it's more mouth sores now, rather than nausea. His gums have started to disintegrate, but soluble paracetamol is helping...any other tips?
His bloods have shown a flicker of life too. Yesterday his WBC was 0.04, today they are 2.0 and neutrophils were 0 and are now 0.02, I know those are minuscule changes, but I hope it is a sign of things going in the right direction.
Thanks for caring
Unless that was a typo, the WBC increase is far more than miniscule. It's about the biggest jump from day to day I've heard of and, I believe, would definitely indicate engraftment has started. If it's a typo, then that's another matter.
At any rate, it does seem like the marrow's stirring and that's a good thing. The actual counts might jump up and down for awhile but it should start an exponential climb once its taken hold. Part of the good news there is engraftment is usually followed by a big improvement in mouth sores.
I think it might be late for the other tricks I could offer. I used a saline mouth rinse, a sonic toothbrush and a little device that kept food particles out of my mouth and I never had mouth sores. I really don't think the saltwater would be a good idea with open wounds.
There are a number of mouth rinses they have. There's the Magic Mouthwash and another I can't remember the name of. But if what he's using isn't a lot of help, might be time to try something else. I'd ask them about it.
Lol. Damn silly me, it was a typo.
I read and re-read that post too. I'll blame typing on my iPhone screen. The increase has actually been 0.04 to 0.2
I didn't realise either til earlier it's more his throat which is sore, I think that is down to the radiation therapy.
Bloodwork sounds great, especially for only being 9 days out. Sounds like he's on the road to being sprung from the joint within another week or 2!
The back pain is fairly normal; Nate had it too, as the cells began to repopulate. Especially in his lower back and hips. Make sure he's using the pain meds they have available to make him comfortable. Nate had a dilauded pump (he's allergic to morphine) and also oral oxycodone to help with the pain.
Tell him to keep up the good work!
So just spoke to Matt earlier and his neutrophils are 3.7 today. Can't remember what his WBC was, but it was a decent figure. His mouth sores have healed and the nausea is finally subsiding. There are even talking about him being discharged then of this week/start of next, depending on how his counts go without the GCSF injections.
Am excited, but a little apprehensive!!
that's great news...sounds like the engraftment is in full swing...I think we are always apprehensive about going home...but the fact of the matter is - he is so much better off at home - the germs at home are nothing compared to the germs in the hospital...I was in-patient for over 30 days so getting out this early seems soon to me...but if things are going well then take that and run with it...
Nothing to be apprehensive about. At least, there don't seem to be any sharks in the water at the moment. But, yeah, there are a lot of things that can still happen.
However, the jump in ANC and WBC is great. It sounds as if he's engrafting and things are moving along very well, indeed.
I'm sorry about his back. Yeah, it certainly could be the bone narrow cranking up, as it certainly has. It could be the stinking bed, too, if it's a regular hospital bed. I had osteoporosis during my SCT and I wound up with a couple of compression fractures just from lying in the hospital bed.
I'm pretty sure it's the marrow thing. You might want to just keep an eye on the orthopedics, too.
Just a quick update on how he's doing. Matt was discharged last Thursday, which was day +13. So he's been at home about a week now, very dull do far, which I like. I've been off for the whole time so far, but scheduled to go back to work on Tuesday, on a part time basis, but work are prepared in case it changes suddenly again. Hes been back to the hospital twice for his outpatient appointments, but neutrophils had dropped down to 1.33, but doctors weren't overly concerned and gave him another shot of the GCSF. His Hb and platelets have both increased from when he was discharged. He's mostly watching tv, but is able to potter about,aking his breakfast and getting drinks, which is better than what I was prepared for.
He saw the professor that diagnosed him today too, he was smiling when he saw Matt, we like it when he smiles lol :)
Much love Chip x
Matt is still doing pretty well and the docs are pleased. Couple of questions though as I did not go to his appointment today.
His bloods are still fluctuating a lot, on discharge 5.something, 4days later 1.something, 3 days later 3.something, 4 days later back to 1.something (sorry for being so vague). Is this fairly normal? His platelets have steadily gone down from 133 to 97, think Hb is still slowly increasing.
Also he is still suffering from nausea, sick nearly once every day. He is on anti emetics, but they didn't particularly help in hospital and Im not sure they're doing much now.
Otherwise he's quite bright, pottering about, eating 2 meals a day (not getting up til midday usually).
Thanks Chip xx
It's really normal for the counts to bounce around a lot, especially this early in the game. Nate is over a year out and his WBC still bounces around between 3.5 and 5. It is also normal for his PLT to bounce around; most people on here will tell you that platelets are the "flakiest" of the blood counts, and I would have to agree with them.
Nate suffered sever nausea for about 2 months after he came home. He was vomiting usually about 3-4 times a day, sometimes more. He took ativan for nausea, as well as zofran. Sometimes a combination worked, but really nothing helped all that much. I cant really offer advice on how to make that better, because with Nate, it just took time.
Good to hear he;s up and about and eating. It sounds like he is doing pretty good
I've got to say that that kind of fluctuation in his counts could be of greater or lesser concern depending on which counts they are. It would be nice to have a little more information.
As for platelets, like Lottie indicated, they're simply insane and might be so the rest of his life. I've quit worrying about mine unless they plop under 50, which they haven't done in a long time. But they can still bridge up to 40 points every time we check them and they're never up to low normal.
It's pretty standard for all of the counts to jump around a bit. Unless there's a consistent and steady downward trend in a count, I wouldn't sweat it a bit. And at or around Day 60, his counts will probably really drop for a few days. Just a head's up, that will be the 60 Day Slump. It happens to most of us.
If they've tried most of the anti-nausea drugs, ask about Marinol. It's a marijuana derivative and it might help with the nausea. It kept me knocked out a lot so I got a license for the real stuff. Living in CO has its benefits.
Sorry Tex I thought I'd put that those first counts were his neutrophils (I really should start reading with posts more carefully before I post). The doctor rang today and sent him to our local hospital for a GCSF injection, so they had obviously dropped lower.
60 day slump, I'll have to remember that. We're only on day 28 at the mo, so I'm maybe expecting too much. He could have still been in hospital. I'll get him to ask if they'd any other anti emetics he can try.
Thanks Lottie. Hearing that Nate vomited is quite reassuring, I'll have to tell Matt that it could be worse!!
It was worrisome for me, too. For a while his doc put him one something called beclomethasone. It is some liquid steroid mixed with corn oil that he drank and it was supposed to coat his stomach. I dont really know if it did much of anything, but it could be something to ask his docs about. Just make sure he drinks LOTS of water. One time when Nate went to clinic he was so dehydrated from vomiting he needed IV fluids for 4 hours. After that we just made sure he was really taking in the water.
Hi everyone, haven't posted in a while, so thought I'd do a quick update with a couple of questions ;)
Matt is doing pretty well, the vomiting stopped about 2 weeks ago when we requested he was taken off the anti depressants as I didn't feel he needed them. He's still occasionally nauseous, but he's able to eat confidently now. He's up and about a bit more too.
The couple of questions I've got are maybe a bit odd, especially the second one, but I'll go for it anyway. Firstly, he's finding his hands get very cold when we're sitting at night watching tv, I'm not sure whether this is connected with the weather which has changed quite dramatically over the past week, from warm and sunny, to snow. He finds it hard to get warm, but does mange eventually, but wearing a lot of layers in bed. The second is his hair. He pretty much lost everything, head, eyebrows, eyelashes. All are starting to come back. But it's also growing in a weird place, just beneath his eyes on his cheeks, and it's not fine, downy hair, but black....he's gonna have to shave it off lol!! Did anyone else experience strange hair growth!??
Nice to see your post Chip...
As for the weird hair...I have some dark chin hairs that I didn't get before...however, I talked to my sister who was my donor and found out that she has to wax her lip and chin because of them...so I'm chalking mine up to her - others I'm sure will chime in - I think you might find that the "hair thing" is a bit different now...I lost all my hair and now 15 months later it is a weird texture kinda like dog fur and very thin - but it seems to finally be thickening up - my eyelashes are gorgeous now and I was lucky enough not to have my leg or underarm hair come back -so no shaving required! (that's kind of a nice perk, for me anyway, lol)
Matt may find that shaving it off once or twice takes care of the problem...wishing you both a Happy Easter and continued success on your journey..
I'm glad he's doing a little better. I can't think of having heard of anti-depressants being related to nausea before. But, I learn something new everyday.
I don't know what to say about your other questions. Could be he's lost weight, a normal occurrence with transplants, that can change our metabolism. That can certainly make on cold. I get colder than I used to but I've moved to Colorado after spending my first 50 in Texas and Oklahoma. I could be that it's just the lower temps. But, again, weight loss can really intensify one's reaction to cold.
The extra hair thing is new to me, also. I know that my hair went through changes but I have a permanent reduction in my body hair (my legs are so hairless they almost look shaved and I have nothing under my arms). Nothing new has shown up.
Hope everything else is okay. Please let us know.
I'm not sure if the antidepressants were the cause of the nausea, or whether it was a coincidence.
He has definitely lost weight, so that could contribute to him feeling cold, never gave that a thought. He's lost nearly 10kgs. He shaved the hair off and it is starting to come through again, he thinks it's funny and describes himself as turning into a wolfman, hes really pleased cos his 'tach seems to be growing back thicker.
Otherwise I don't think there's much to report. His bloods were pretty good on last visit; Hb 11.6, platelets 136, neutrophils 2.3 and WBCs 3.6.
Day 51 today, so half way to the dreaded day 100.
Thanks everyone, Chip xx
Any chance he is on cyclosporine?? That will cause you to grow hair all over, my son had a unibrow and hair on his cheeks. Some of the kids had hair on their foreheads, backs and hands, especially the dark haired kids. Looked like little monkeys. But it is all for a season and once they stop the cyclosporine, the hair goes away.
Sounds like things are going par for the course, hope you all had a quiet Easter.
Yes he is on cyclosporin! Already reducing his doses cos hes doing well and no signs of GvHD, which is good, but worries me a little too :-/
And he's dark cos half Portuguese. Ah well, hopefully that explains it, he'll be happy about some of the hair growth, especially if it gives him a thicker beard than he use to have lol. I'll keep at eye out for it in random places and pluck it out.
Good to know, thanks!!
By the way my son lost about 55 pounds post transplant. He also had TBI and had terrible nausea and vomited a few times every day especially the first 100 days. I dont know if it was the sole blame for his nausea or that along with all the meds and maybe some gvhd. He did show outward signs of gvhd in the skin about 58 days post transplant. He also experience severe fatigue about 4-6 weeks post transplant, they called it somnolent syndrome and said it was quite common in TBI patients. Just a couple of things to consider.
About a week after my sons cyclosporine was decreased, every dose and like clockwork, we would see signs of gvhd. Just pay attention and see if you notice any changes. My sons came in the form of nausea, diarrhea, and skin changes. Not everyone gets gvhd, but it was always about a week after a drop in dose for us.
Don't worry about the GVH. It will likely show up in time, especially as they decrease the dosage of cyclosporine. If not, well, it's not a requirement for a good recovery.
Just do like MW said and keep an eye open for signs of GVH and get him to the doc if signs show up.
Just a quick update. Were just under a month til the dreaded day 100 and Matt is still doing well.
Tex, thank you so much for the heads up about the day 60 slump. Matt definitely experienced it, think neutrophils got as low as 1.2 and he was much more lethargic, quiet and his appetite decreased. I would have been panicking if you hadn't pre-warned me. 5 days later he was back up to near normal 2.3 and he's much livelier in himself again, even managed to take the dog for a walk last week and cut the grass yesterday!
I'm still dreading the end of May and his biopsy, but trying to remain positive.
So day +100 came and went on Sunday. Matts biopsy was today and he had his Hickman line removed. The doctor said we would hear back regarding his remission status either later today or tomorrow. It's now 8pm over here and we haven't heard anything. This is the first time we haven't been informed of early results on the day of the biopsy and I know this might be unusual, and it's completely unreasonable but I'm having a major panic, I've no reason to believe Matt isn't in remission, he's very well, best he's been since well before he was diagnosed, but I'm terrified that were gonna get bad news tomorrow :(
Congratulations to Matt and you on getting past Day 100. The five years after transplant are full of road markers and this is the first one. It's great to get past it.
I have never gotten my BMB results the same day as I had the procedure, even when the results were supposed to be figured out STAT. I'm surprised they've ever been able to get you same day results.
Look, if they'd been concerned that Matt had any issues, they wouldn't have removed his Hickman only to have to put it back in. That's about the biggest vote of confidence I can imagine. Second, that you didn't hear the same day indicates to me the doc didn't put a rush order on the results. That would only be if s/he was sure that there was no reason to be concerned.
At least, that's my experience.
I'm very happy to say Matt is still in remission. Doc said marrow looked really good. That's me done in for the day, have been an emotional wreck. I know what everyone said made complete sense and deep down I knew there was no doubt, but all that waiting, when ususually we've heard in a few hours was very hard!!
Thanks for all your continued support though :) xx
Hi all. Just a quick update, about a month after Matts biopsy, we finally got the rest of the results; 100% donor. Tex you'll be pleased to hear I didn't panic and after 2 weeks of no news I realised it must be good :) the doctor even had to look for the results cos they weren't obvious, as he said 'if you've got to look for them, it's good news'.
He's now on monthly checks, the dry skin is getting under control with his new creams and he's 80% back at work. Doc was very pleased at last check, all bloods normal, expect for, I *think*, lymphocytes, but apparently they take a while to recover. We're currently 5months post transplant and doc said 90% of people will relapse in the first 6months, don't know if that's the general feeling on here, but I liked that statistic. I know we've still got a looong way to go, but it's nice to feel more positive again :)