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Bone Marrow Transplant Stories

worried08
Posts: 16
Joined: Jul 2008

My husband was diagnosed with APL last year. He went into remission for a few months it now has come back in his Central Nervous System. The doctors are now wanting to do a BMT with his own stem cells. If anyone could give me their experience with a BMT I would greatly appreciate it.

doreenh1986
Posts: 6
Joined: Mar 2009

i ve never experienced that but i will keep your family in my prayers ......

angelstar
Posts: 8
Joined: Mar 2009

hi i was diagnosed with AML last march 08 i was in remission till jan 09 had a relapse it came back so im in the position i have to now go thru a bone marrow transplant im goin friday to get alot of test run on me and try and find a match im very scared and nervous so i wish yall luck and in my prayers if u wanna know more ive been studyin and researchin BMT

worried08
Posts: 16
Joined: Jul 2008

Angelstar - How are you doing now?

angelstar
Posts: 8
Joined: Mar 2009

hi well i went for alot of testin fo rthe bone marrow they told me they found 3 possibly matches im still waitin to do it might be this month or next month im very very scared tryin to find people that have gone thru it and have lived thru the transplant

srvivr4
Posts: 6
Joined: May 2009

Hello,

I had a BMT about 7 months ago Stanford University in CA. I am doing well and cancer free! Please email me with any questions I would love to help!!
cslpainthorses@hotmail.com

Sarah

defeat_cancer's picture
defeat_cancer
Posts: 2
Joined: Dec 2010

HI,
I had just gone through autologous stem cell transplant in nov. 2010. Till now i m good & feeling normal. But i m still worried that in future this disease shld'nt come again. so anybody here to boost up my power i.e any succesful case of autologous transplant.

Meff
Posts: 1
Joined: Oct 2009

I underwent a Bmt, for CML, on Feburary 22, 1992 and have been Leukemia free ever since. Treatment for Leukemia has advanced so far, since then that the survival rate has drastically increased. I read a book about transplants, that was written by a mother of a transplant patient, written five years prior to my transplant. The problems that her daughter went through were three times as bad as what I went through. If you would like some further information, please call me.

dmarie725
Posts: 2
Joined: Mar 2011

Hi! I read your post on being a long term survivor of a BMT. That's amazing.

My husband (before we were married) went through a bone marrow transplant for ALL when he was 19 years old, back in 2002. Everything has been great since (knock on wood)! It's been about 9 years since the transplant, and for some reason as his wife, I am suddenly becoming so worried about him...unexplained worries & anxiety I guess.

I keep reading things online about late side effects of chemo/radiation, and everything I read scares me, which I think is causing the stupid worries. As a survivor, have you ever had late effects of your treatment? I have to believe there are plenty of people out there who have a bone marrow transplant and go on to live completely normal and healthy lives just like people who never had Leukemia in the first place.

Any suggestions or thoughts?

srp1215
Posts: 3
Joined: May 2011

hi, i read your post about your husband and am very happy to hear he is cancer free. my brother is 29 and has ALL. he's getting an allogeneic bmt in a few weeks. im really freaking out and was wondering if you had any info to share with me about what to expect? anything would help, thank you so much :)

nldaoust
Posts: 2
Joined: Jun 2012

I am currently looking at a BMT, and would love to chat with folks who have survived one for CML.

Nolana

Maribthe1
Posts: 7
Joined: Sep 2012

Hi my name is mari. I was dx with ALL at the age of 28. It's been a scary roller coster especially me have 3 small Childrends. I'm happy to say that after 6 months of chemo & a nine marrow transplant I'm now cancer free.back on my own with my kids. Working part time and just taking it day by day. If you ever need someone to talk to u can email me or text or even call here's my info mjdiaz81@yahoo.com or my # 561 601 1970 feel free to contact me with any questions or if you just need some one to talk to. Take care and stay strong.

natalia777
Posts: 2
Joined: Oct 2012

hi, I am 15 years old and I may be getting a BMT for CML in january. how did it go with yours? I'm so scared

KCleaver
Posts: 6
Joined: Nov 2009

Hi angelstar - your worries are justified but there are so many people like me, transplant for CML in 1197 - in great health, back to running biking etc within two years. It is a tough but very doable process. Look at the bright side, how would you like to have no donor? Attitude is critical - the tranplant is the answer not the problem. Your body is going to want to know from your brain that you want to survive. Surround yourself with love, read Bernie Siegals first three books - just go to Amazon or google him - he is one reason I made it, there is no doubt.
In the unit its one day at a time and like the Buddhists dont worry about whats around the next corner. Take in the love of the nurses etc and marvel in what has gone into this miraculous process.
Peace,
Kip

Maribthe1
Posts: 7
Joined: Sep 2012

Hi my name is mari I'm now 30 yrs old. I was dx with all at 28 after 6 months of chemo going into remission and 4 months later a bone marrow transplant. I'm happy to say that it's been a year after my bone marrow transplant. And I'm now back on my own raising my 3 children's on my own and working part time. If you have any questions or just want to talk to someone feel free to contact me at mjdiaz81@yahoo.com or you can text or call me at 561 601 1970 take care and be strong.

angelstar
Posts: 8
Joined: Mar 2009

hi well i went for alot of testin fo rthe bone marrow they told me they found 3 possibly matches im still waitin to do it might be this month or next month im very very scared tryin to find people that have gone thru it and have lived thru the transplant

worried08
Posts: 16
Joined: Jul 2008

I have seen this posted before. Its a blog about a woman that had a BMT. Check it out if you wish. She tells her story.

http://www.caringbridge.org/visit/leamorrison

jennymotta
Posts: 3
Joined: Sep 2009

My name is Jenny and Eight years ago my younger sister Michelle was diagnosed with Chronic Myeloid Leukemia (CML). Three weeks later we found out that I was a match for her. She was 21 at the time, and I was 23. She is now a very healthy 30-year-old woman. You can make it. You need to take care of your self though. It's very important to make sure you walk a lot after the transplant. Your not going to want to, but it's a necessary. If you have any questions feel free to contact me at jenny@cancersreality.com. Take care. -Jenny

buguhboo's picture
buguhboo
Posts: 6
Joined: Feb 2009

I'm going to have to go through a BMT also. I have to give my doc my final decision next week. Would like to hear others stories, and also, angelstar, would like to know what's going on with u and how you're doing. Keep me updated if u can.. sounds like we'll be doing everything around the same time. Maybe we can help eachother. Get back to me.. buguhboo25@yahoo.com, name is Monica by the way.

Maribthe1
Posts: 7
Joined: Sep 2012

Hi my name is mari. I was dx with ALL at the age of 28. It's been a scary roller coster especially me have 3 small Childrends. I'm happy to say that after 6 months of chemo & a nine marrow transplant I'm now cancer free.back on my own with my kids. Working part time and just taking it day by day. If you ever need someone to talk to u can email me or text or even call here's my info mjdiaz81@yahoo.com or my # 561 601 1970 feel free to contact me with any questions or if you just need some one to talk to. Take care and stay strong.

mauveb2k
Posts: 11
Joined: Jul 2009

Im in the process of finding a match amongst my 2 siblings, my oncologist strongly suggest stem cell transplant after having in remission from the first induction therapy, i was diagnosed may 29,2009, i'm 44 years old, i am scared too and confused what to do. i hope everything is alright w/ you angelstar if you have decided having BMT, goodluck and godbless

jennymotta
Posts: 3
Joined: Sep 2009

I was my sisters bone marrow donor 8 years ago. I would suggest a stem cell transplant, everything I've read lately suggests that there is a greater chance for survival with a stem cell transplant. About three weeks after the transplant my sisters platelets weren't coming back very fast. Then they told us if we would've done the stem cell, instead of the bone marrow they would've came back faster. (ask your doc.) Also its less invasive for your sibling. If you or your siblings have any other questions I can help with. We started a website called cancersreality.com, my contact info is on there. Take care. -Jenny

arabicontamus
Posts: 2
Joined: Aug 2009

Hello, my name is Christianto Perdana. I am very sad to hear you had relapse. But always believe you will get better soon and always prayer to God ya because I believe the healed is only from God ^^V

I had suffered AML too, same like you and had Bone Marrow Transplant. If you don't mind, I want to share my experience about "How to take care Bone Marrow Transplant patient's". You can look at my blog in this site or if you have trouble to see this, maybe you also can look at http://spirit2cancer.blogspot.com/ . I hope this article can help you to cope better with the BMT's processes. ^^V

I hope you can do the Bone Marrow Transplant and never give up to your sickness. Always believe and give all things to God and I believe you will get better soon and can be healthy as another people and together with your family ^^V.

If you have question, you can send me e-mail at : arabicontamus@gmail.com . I will answer with what I know and with my experience about Bone MArrow Transplant ^^V. God Bless ^^V

debrez
Posts: 3
Joined: Mar 2011

I was diagnosed with AML in Jan of 2008 and had a bone marrow transplant March 18th of 2008.
I would be than happy to answer any questions you might have. You can email me at debbiereznicsek@hotmail.com

ironrail
Posts: 2
Joined: Mar 2012

I was diagagnosed with acute AML in '09. Got stem cells from 38 year Bravarian guy on Christmas eve '09. Match was 9/10. It worked, no recurrence. For those who experience recurrent AML after a transplant, the are trials going on on the West coast which show very promising results. Please keep me posted, my prayers are with you. Don't let them give you a blood transfusion within 12 hours of the stem infusion.

ann 52
Posts: 2
Joined: May 2012

My husband is 64 and his brother is a match for a BMT. We just found out Friday. My husband was very active, the fatigue and weakness is really depressing for him. He is receiving blood transfusions every 7 to 10 days. After the harvest from the donor how soon did you receive the transplant? After the transplant were you able to get your strength back? Would appreciate any input.

Catiejay
Posts: 1
Joined: Oct 2011

I was diagnosed with ALL and received my BMT a day after they harvested the stem cells from my sister which was six months ago. My strength has slowly returned but not to fully. I am on isolation as your immune system is suppressed so your body will not fight the new stem cells. They encourage exercise to increase your strength. I do a lot of walking which I love. It enables me to get out of the house and I see my strength increasing. I am hoping to be able to run again soon but i had a setback a few months ago and am on steroids which weakened my joints. Anyway, I hope this helps some. If you have more questions email me at kenedie1@yahoo.com.

senior33104
Posts: 4
Joined: Apr 2009

I had a Autologous stem cell transplant two years ago when I was 21. I was very sick from the chemo cytoxin I was really sick but after that everything went smoothly the good thing is since he is using his own stem cells he won't get graft vs host disease

Kiran
Posts: 3
Joined: Sep 2010

hey..i am an ALL patient. was diagnosed a on 3rd sept, 2010.
i have been on chemo -the induction phase for the past one month. after two cycles my counts went very low, so they delayed the third cycle. my Dr. said that counts are low coz of sensitivity to the chemo, which is a good sign in one way. anwya as my counts were not recovering as they shud have been normally, they did a bone marrow aspiration to find out what was happening miway in the induction pd. y bone marrow is clear so i am in remission. i am scheduled for my 4th cycle of chemo omorrow which will be the last in teh induction phase. even i am doing ok in my chemo ..with not very high adverse effects except a bit of nausea and loss of appetite after the 3rd cycle. but i still dread vincristine, which i think makes me feel lousy..though i recover after 2 days.
what should i expect in the days to come...can someone plz tell me if a bone marrow transplant should be used as the first option or the last option? i have 5 HLA matches with bro' out of total 6. is that a good result for transplantation? or i'll have to look for a 100% match?

hylasgirl
Posts: 1
Joined: Oct 2010

Kiran... I can help. Or at least I can tell you what you can expect over the months to come. Please email me at sburbank35@aol.com

ironrail
Posts: 2
Joined: Mar 2012

I had AML. I was treated with two rounds of inductions. It failed. They gave me a round of chemo used on juvinal AML. It nearly killed me but it worked. Now the interesting part. My red cell count plummeted. I received transfusions every couple days. After 3 weeks of this my platllets began recovering. First slowly than more rapidly. My red cells limped along. They gave me a dose of somthing biological which sometimes works. It did. However, all those transfusions left me with a liver full of iron. It glows when I get a Cat scan. So what! Good luck buddy. The roads' hard, but it well worth it

KCleaver
Posts: 6
Joined: Nov 2009

I was cured of CML with my transplant back in 1997. It helped SO much to talk to those who had been through it. Here are some points/themse to keep in mind:
- they have made so much progress with it
- it is a tough but doable procedure
- get your mind in shape for it. Mind/body techniques were a huge reason I made it through.
- read Bernie Siegals first three books. Dont start underlining as you will underline the whole book. Guided imagery meditation will help you through and for the rest of your life.
- realize how lucky you are to have a treatment option and great hope. So many have little. My attitude was just give me any shot to stay alive and watch my kids grow up. I have to climb Everest? Lets start packing. Swim the English Channel? Where is my bathing suit? Have a tranplant? When do we start?
- one day at a time, as you prepare and during the procedure. We had so much good and bad news for those weeks we just decided to laugh at everything. It helped and the nurses were amused.
- I went out and did a 2 day bike ride to raise money for my marrow donor drive, climbed the highest mountain in Maine, etc etc - I was lucky to be on a band aid drug where I felt fine until the BMT.
- If you think attitude doesnt matter, my nurse told me about the 3rd day that she overheard my doctor tell another doctor that I would sail through it - he had seen my attitude. That meant so much and I told her to tell that to all the patients whether true or not.
- This whole experience will change you in so many positive ways - focus on that and what you are learning about what matters in your life - you are going to be a much happier and relaxed person when its all over.
- You have a choice about how you approach all this.
- I will post again with a great website with my favorite FREE guided imagery meditations.

Kip Cleaver

nldaoust
Posts: 2
Joined: Jun 2012

I am looking at having a bone marrow transplant for CML as I am failing treatment again. I would love to chat with someone who survived it.

Nolana

I want answers's picture
I want answers
Posts: 8
Joined: Oct 2012

My really good friend just told me, when he was around 14 he found out he had leukemia.... He did chemo for a year or more. And after they needed to do a BMT. His brother was a perfect match. As i said this was all when he was 14-16 years old. Now he is 18 and he is fine. The BMT was successful. But I'm just wondering if everything was successful, what's his life expentancy? This is what I read on google, and it scared me so much
"Patients who have survived for at least 5 years after hematopoietic cell transplantation without recurrence of the original disease have a high probability of surviving for an additional 15 years, but life expectancy is not fully restored. Further effort is needed to reduce the burden of disease and treatment-related complications in this population"

Does THIS MEAN PEOPLE CAN ONLY LIVE 20 OR LESS YEARS AFTER A BMT???? PLEASE SOMEONE ANSWER ME, WITH A TRUTH.

brian50's picture
brian50
Posts: 17
Joined: Feb 2010

Hi,

I received a Bonemarrow transplant at 27 years of age on the 23rd of October 1987,just over 25 years ago.

I have lived life to the full,and hardly had a sick day since,until of late.

I met my wife about a year after my transplant,I ran my own successfull buisness for 10 years,and have never been out of work.

My son was born 17 years ago as a result of having sperm frozen before my transplant,he is in his final year at school and is hoping to go to University to study Chemical Engineering.

At the beginning of this year I started to get chest pains when running.The cause of this turned out to be blocked heart arteries.I had a triple heart bypass 13 weeks ago.I returned to work 4 weeks ago and I feel in good health again.Doctors did not know if this was to do with my treatments and transplant 25 years ago.I should add I have never smoked and led a fairly good lifestyle.

I am 52 years old at present and intend to be around at least till I reach retirement age.

Here is my advice to anyone who has or will be having a Bonemarrow Transplant, after you've passed the 2 year mark,put it to the back of your mind and carry on with your life and live it to the full.

Regards

Brian.

I want answers's picture
I want answers
Posts: 8
Joined: Oct 2012

Brian, thank you so much for sharing this, idk how to thank you. This actually made me feel so much better. I searched google and stuff, and most of them say "if you survied past 5 years after your BMT, then you mich have a chance of living 15 more years" That freaked me out honestly. Do a lot of people survive that long, like you did? And another question, you said you had your sperm frozen before your son was born. Does that mean if you didnt do that, you wouldnt of been able to produce kids? I just want to get as much info as possible, and honest too. Thank you again, and if you can reply to me it would be great.

Much love. <3

brian50's picture
brian50
Posts: 17
Joined: Feb 2010

Hi,

Sorry,but I was told due th the radiation to destroy the old bonemarrow that I would be infertile afterwards.I was tested before we tried for family and this was the case.
My wife fell pregnant after a few attempts of the frozen sperm,we tried for more children later using the frozen sperm but this proved un-successfull. We decided when my wife reached 40 to call it a day and thanked God for our son we had been given.
Donar sperm is a possibility, if your freind ever wants a family.

I honestly don't know how many people survive,but a couple of years while at my family doctor I asked will I see 60 his answer was there was no reason why either of us should not see sixty.

This site is very good,but tends to be fill with patients or former patients who are having problems.The ones like myself who have not had problems are unlikey to post here.

Long term effects for some due to the radiation and chemotherapthy could be a problem,but remember these effects do not apply to everyone.

Look under "Long-Term Effects of Treatment" on this site, but this does not mean your freind will get all these problems.
My GP (family doctor) treats me the same as any other patient,and as far as he is concerned my problem 25 years ago is in the past and does not need to considered with regard to any problems I might have now.

Regards

Brian.

I want answers's picture
I want answers
Posts: 8
Joined: Oct 2012

Wow i didn't know after radiation people become infertile afterwards..... That kind of sucks, really. Idk what to tell my friend now. Thank you for letting me know all of this though, you are so sweet, and i wish you the best of luck in life ! :)

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