Transplant date - Nov 5th 2014.

[Lightsped]

Well, my friend (22 years old - white male) who was diagnosed with AA in Oct 2012 is scheduled to have his BMT on November 5th 2014. The Doctor thought that the transplant was a very good option as he had responded to his treatments very slowly and his numbers weren't quite up to a good level yet.

He will start by staying in the hospital while he is given Cytoxan Chemo five or six days prior to transplant. He is scheduled to remain in the hospital for a week or so after the transplant.

He has no parents (both died due to cancer). He has a 12 out of 12 unrelated match donor. He will be staying at Northside Hospital in Atlanta Georgia. After he gets out of the hospital my mother will be taking care of him. He has very little family.

We are scheduled to go to the orientation/education day on Oct 13th or 14th. I am very worried about my friend. I would love to hear any tips or hints on what to expect.

[Neil Cuadra]

Lightsped,

The transplant can cure your friend's aplastic anemia. He's a prime candidate for a successful transplant because he's in his early 20s, is in good overall health, and has such a good donor match. It would be a shame for somebody that young to spend the rest of their life hoping medications can keep their blood counts from dropping. Transplants involve risk, but he's on the lowest side of risk scale.

You mentioned in an earlier thread that your friend has a few relatives. My advice is to see if there's somebody among his relatives or friends who could be with him at the hospital as much as possible during the transplant process. Ideally it would be one person who can arrange to be there for the entire 2 weeks, but the job can be shared instead. Transplant patients are often unable to keep track of their treatment status, remember their questions for the doctor or the instructions they hear, may feel alone and frightened, and may be confused if they are on pain medications. Although doctors and nurses will attend to his health needs, having a companion and advocate there as much of the time as possible can make a big difference.

I saw this firsthand during my wife's transplant. Other patients who had family members (or very close friends) with them had an easier time.

It's extremely generous of your family to look out for your friend and care for him during his recovery. If someone from your family or his family can go the extra mile for him by being a hospital companion, it would pay off.

[Lightsped]

Yes, he has very limited family members left. He has a aunt he is fairly close to, but that is about it as far as actual family goes. We (the aunt, my parents, or me) definately do plan to be at the hospital with him as much as we are allowed. On a strange note, his transplant is scheduled for the day after his 23rd birthday.

Currently he is under the impression that we really won't get to be with him much after he starts chemo, as they are trying to minimize outside germs from being near him. He thinks he will be located in an isolated room with very limited visitor possiblities.

If we are allowed, there will always be someone there with him.

Thanks for the reply. If you have any other tips or ideas, they would be greatly appreciated. I am very worried and asking for everyone's prayers.

-David

[Fana]

Hi Lightsped
Our prayers are always with your friend..he is very lucky to have a friend like you. My son is post transplant 29+ days I was the only caregiver like Neil said its easier if you have more people to help.
When the counts go down after the chemo the patients are isolated but one caregiver at a time will be allowed that was the case with my son.talk to his doctor before the transplant in some hospitals they let you visit the bmt suites before the transplant so you will know what to expect.good luck

[Neil Cuadra]

Originally Posted by Lightsped

Currently he is under the impression that we really won't get to be with him much after he starts chemo, as they are trying to minimize outside germs from being near him. He thinks he will be located in an isolated room with very limited visitor possiblities.

I suggest that you find out about this from the hospital ahead of time. When my wife was in isolation, other visitors and I had to scrub our arms and hands, wear a paper gown over our clothes, and put on a paper mask, so that's what we did. Refer to yourselves as caregivers, not visitors, and be prepared to follow all procedures they use to keep your friend safe from infections.

For patients, a transplant typically involves good days and bad days, not always in a smooth pattern. Caregivers offer comfort just by being there and can help patients through the bumps in the road. One way is to help your friend communicate with others of his friends and family. Help him share his news on social networks, by email, texting, phone, etc., and pass along messages from well-wishers. People shouldn't send flowers, plants, or food, but if they send notes or pictures you can put them up on the walls.

Whoever is there with your friend should be prepared for stretches of boredom. Bring a book or a tablet or laptop computer for when your friend is napping during "your shift".

If you help your friend track his blood counts, which will be measured one or more times per day, be prepared for them to drop way down. A white count of 0 means that the cytoxan has worked to kill the cells of the faulty immune system, even though it has left him very susceptible to infection. You then wait for the transplanted immune system to kick in, as shown by the white count increasing. It's scary to wait for that to start, but when it happens it's a reason to celebrate. Don't be shy about asking for the results of each blood test (called a "CBC") if they don't think to give them to you.

These suggestions are based on my experience. Your experience will no doubt differ, but I hope this helps. After the transplant you'll probably have suggestions of your own to pass along.

[Lightsped]

Well, tomorrow (or technically today) is the education day for Justin's BMT. My parents and his aunt will be attending a series of meetings with the various Doctors.

I am still nervous. Justin seems not too worried about anything. He did express concern over the possibility that he might not get to have children due to becoming steril. He also said he may loose his hair, but I was quick to tell him that he shouldn't worry as it will grow back.

Question: When will Justin mostly likely feel the worse? Will it be during his chemo and radiation (they will be giving him a small amount of radiation), or will be after the transplant during the recovery phase?

Thanks for any help, tips, or ideas anyone here may have.

[Neil Cuadra]

Originally Posted by Lightsped

Well, tomorrow (or technically today) is the education day for Justin's BMT. My parents and his aunt will be attending a series of meetings with the various Doctors.

I am still nervous. Justin seems not too worried about anything. He did express concern over the possibility that he might not get to have children due to becoming steril. He also said he may loose his hair, but I was quick to tell him that he shouldn't worry as it will grow back.

Question: When will Justin mostly likely feel the worse? Will it be during his chemo and radiation (they will be giving him a small amount of radiation), or will be after the transplant during the recovery phase?

Thanks for any help, tips, or ideas anyone here may have.

Pre-transplant education days are very useful. I'm glad the family will attend.

See the Can i have a baby??? thread for advice about using a sperm bank before treatment begins. Sterility is likely, though not the case 100% of the time.

Some patients feel awful during chemo and radiation while others sail right through it with no ill effects. Patients are likely to feel bad when their white count is zero or very low, which is an expected stage in the days following the chemo and radiation. Without white cells, mouth sores are likely. The trick when that happens is to have adequate pain medication. Nobody gets points (or a better recovery) for suffering. Patients should speak up about any discomfort they have so the medical staff can help them, while you wait for the new bone marrow to do its magic.

[bailie]

Firstly, it seems that there are many different responses to a transplant. I am now on Day 60 following my stem cell transplant. I went to the hospital on Day -4 to start chemo. I was walking five miles a day (Day -4 and Day -3) before I felt the effects of the chemo. From Day -2 until discharge (Day +13) from the hospital I didn't walk a tenth of a mile total. The experience was tolerable, but not pleasant. I didn't watch TV or read. I didn't want visitors. Too much commotion in the room was difficult. You are just putting in time until you can get out. I lost my sense of taste at about Day +5 (regained at about Day+30). My sense of smell had an inverse relationship (I could intensely smell everything) to my sense of taste. One of the problems I had was drinking liquids because of the taste problem. Water tasted terrible and that surprised me. It was difficult taking the many pills when the water (and everything else) tasted badly. My longest period of sleep was about four hours a night from midnight until 4:00 a.m. It was terrific to get out of the hospital and to our temporary living quarters at an apartment. I should be able to move back to our house in a couple of weeks (about Day 80).

[amyangel]

Hi Lightsped,
My daughter has MDS and we are now on day + 7 and she is doing great ! Prayers and love to you and your young friend going through his BMT .Trust in the Lord and keep your faith . I also have a post going on her days of BMT called My 27 year old daughter SCT but she had a BMT . with a 10 /10 match and youth is on his side !!

We totally understand the fears .
ask as many question as you need to even if you ask them again and take notes lots of them ... They should give you some kind of binder with all the information you will need to get through BMT.

[Lightsped]

Thanks for all of the replies and information.

My parents, and Justin's aunt went through the orientation/education day thing today and met the Doctor, and everyone else who will take part in this procedure. A lot of questions were asked, but I am still tense and nervous about the whole thing.

Justin mentioned that his hair will probably fall out. Even though this is a minor issue, how long will it be before it grows back?

[Neil Cuadra]

Originally Posted by Lightsped

Justin mentioned that his hair will probably fall out. Even though this is a minor issue, how long will it be before it grows back?

Chemo works by killing fast-growing cells, which include the bad cells you want to get rid of, but also some good cells like those in hair follicles. Once chemo is over, hair starts growing again, but slowly at first. Typically it takes 2 to 3 weeks to get a fuzzy cover of hair. By a month after the chemo, hair growth returns to the normal rate, and by 2 months it will be about an inch long.

Hair on the top of your head is the most likely to fall out. Sometimes eyebrow hair falls out too, and it's a little slower to grow back than scalp hair.

Some patients prefer to shave their head before chemo begins, rather than have their hair turn thin and fall out. It can be less traumatic to cut it off yourself. Many male sports stars and movie stars have shaved heads (would LL Cool J be bald if it wasn't cool?) so it's an acceptable style for men, but it's harder for women to lose their hair.

You'll notice men wearing caps and women wearing scarves at a typical treatment center, not just for vanity but because your head gets cold when you're used to having hair!

[amyangel]

Amy had lost some hair before we did this round of Chemo it got pretty thin ... But she has not lost anything so far this time round .. The Vidaza she was on made her hair really really thin . I can still put a pony in it yet !

I think everyone is so different. When I gave birth to her she had a ton of hair ... I think the Good Lord is making it happen the same way again !!

But if she would lose it It's hair and it will grow again I had sewed her many many hats .

[GoodDay5150]

I had a mini-transplant in Dec 2011 for PNH. Up to that point I had no Soliris, no treatments or transfusions, only blood thinners and supplmnts. I had abt 1/3 of the chemo and radiation than that of a standard transplant. I certainly felt sick for abt 3-4 days, but not that bad. More dizzy than anything. Your sense of taste and smell will be dodgy for a while afterwards. Even bottled water and toothpaste tasted/smelled bad. The anti nausea meds worked pretty well for me. I was never diagnosed until abt 7 mos b4 my trans, so I was super tired and fatigued for a very long time. I was so sick and tired of being sick and tired, I was excited abt the whole thing. Obviously I was worried as well, but I did my best to remain calm. Med tech is pretty good, and everything that I have gone through/ continue to go through is much better than the alternative. Good Luck

[Lightsped]

Thanks for the feedback everyone.

Well in less than six hours we will be admitting Justin to the Hospital....

Yesterday he went in to have his tube/port thing installed that they will use to do the BMT on Nov 5th. He said that procedure wasn't too bad as they put him to sleep. He said it was starting to bother him last night though. He took one pain pill before bed hoping it would help him sleep.

According to the schedule, tomorrow will begin the high dose chemo along with a small amount of radiation. I am really scared. I am trying to stay strong and reminding him and others to pray and be faithful.

This is going to be long road and I really hate it that Justin has to go through with this, but I am sure everyone that has been in this situation has said the same thing.

I will continue to read the replies and provide updates with Justin's condition. Prayers are still being requested.

Thanks for everyones info, support, and time.

[Whizbang]

David,

Give our good luck and prayers to Justin...

And I like him tried to keep everyone away during the Transplant, to minimize the possibilities of infection, my wife was my only visitor for the first 27 days in the Hospital... I saw my three daughters and in laws for a few hours after that on a quick visit home after I was released... (with mask and gloves on)...

BMT/SCT is a lot to go through to catch a little virus that could possibly harm you...

All the best, and May God Bless!!!
Whizbang (David)

[Lightsped]

Well, Justin is in his third night at the hospital. He has received two hours of chemo (9pm-11pm) per day. He has also been on Atgam a lot. It appears that is what is affecting him the most.

His first day was pretty uneventful. Just setting things up, and getting started with chemo. Pretty talkative. Walked alittle.

Second day was decent. More chemo. Still sort of talkative. Walked alittle.

But today he was pretty down. Cried some and just didn't feel well. He did walk alittle. Doesn't like the hospital food and feels like he will throw up when he tries to eat. Has eaten very little since he began his stay. I'd say today (his third day) has been his worst so far. Had very little to say.

Will keep everyone posted.

[bailie]

Keep in mind there is constant adjusting to find what works. The third day was when it really started for me. It was tomato soup that was the key for me, but try everything. I could eat/drink the soup, but could not swallow water. It was a surprise for me. I was constantly searching for the foods/liquids that were tolerable for me.

The thing to realize is that it will get better in about two weeks. Try to stay comfortable as possible. Less commotion in the room seems better. For me even the smell of the alcohol was difficult. I would put a blanket or towel over my nose to avoid the smell. The important thing is to do whatever works and before you know it the two weeks will pass.

[Lightsped]

As I write this, the BMT has begun. Justin has mixed feelings of nervousness, scared, relived, and hopeful.

Prayers requested as always!
Thanks

[sues]

I'm wondering if you can take vitamins when your in isolation for a transplant and get all the wicked medicine?

[Neil Cuadra]

Originally Posted by sues

I'm wondering if you can take vitamins when your in isolation for a transplant and get all the wicked medicine?

Sues,

What you can and should take is up to the transplant doctor. During the transplant, the goal is to get you through the transplant process. During the transplant recovery, the goals are to keep you safe and give you the best chance of a complete and timely recovery. If vitamins help with those goals, they are quite appropriate.

Keep in mind that good general eating habits, such as getting fresh fruits and vegetables or avoiding empty calories, take a temporary backseat to critical health needs during a transplant. Fresh fruits and vegetables may not be safe for the immunosuppressed so those may be temporarily out of the diet. And a patient who had chemo drugs may not be able to stomach anything other than sweets at first, and that's OK. If vitamins can help and the patient is able to take them, a doctor may be the one to recommend them.

[sues]

Thanks for the reply. I was reading posts about not even wanting to eat or drink. I take vitamins and wondered if others took them with their treatment.

[bailie]

Vitamins would be one of the last things on my mind when going through the transplant process.

[sues]

I bet. After reading these posts I don't think I could do it. Not sure whether or not they can find me a match anyways.

[bailie]

Many of us have no choice. It came down to a choice if I wanted to live or die quickly. I have zero regrets for having chosen to have a transplant.

[sues]

Glad to hear that. I'm just in the beginning in limbo, trying to figure out the options. I do have karmonos in Detroit trying to find me a match, but I guess it takes months.