Warrior... I'm so sorry to read this. I completely understand how scared you are, my husband recently relapsed too and is day -6 for allogenic BMT. Since your brother was your donor they can quickly do a second harvest and infusion of just his T cells- this is called a donor lymphocyte infusion, this is used sometimes to treat early relapse of BMT. Also taking you off the immunosuppressive drugs can help too. Stay the course, stay focused, and as positive as you can right now, not an easy task, I know! We will be thinking of you and adding you to our prayers
Lea

Warrior -- you are a fighter -- try to keep fighting so hard that you stop worrying about it. We have had several relapse on this forum who were able to get back into remission again. My theory is that it is just a matter of chance that the mutant stem cell that is causing this trouble is not disabled or killed by the chemo. There is no reason that it cannot be nailed by the next round. As for alternatives -- there is one possibility on the right panel of this page, and Heather's dad has been a survivor for at least two years after they totally gave up on him -- see this sites "Alternative Treatments" thread. However, if I were in your situation I would go with what your team is recommending. It is just my opinion but as long as your team is fighting with you, I think this is your best bet. At the point where they give up, then your research of other alternatives might become useful. But for now I think you are doing the right thing by accepting their advice. Please keep us informed and we will keep you in our prayers -- dave

It sounds like this happened very fast. What were your symptoms? Had you been feeling well? I didn't realize your brother was your donor but that is certainly one options, the donor lymphocytes from him. As scary as this is, there have been a number of people who did require two transplants. A friend of mine's daughter had a similar issue; a sibling donor relapsed and she got a MUD and is doing well. First they will work on getting you into remission of course. Are you happy with the hospital you are at? If not, this might be the time to change, if so, full speed ahead. There is a Facebook page called Bone marrow and stem cell transplant survivors and they have a section for people who have had multiple bmts. You are not alone! We will all be behind you. I will be praying your remission comes quickly and easily and the doctors are given wisdom for the very best route to go. I don't think that combining alternate therapies would be helpful at this point but meditation and perhaps yoga might be helpful. There is no reason to feel out of hope!

Thank you for your supportive feedback. I really need that right now, especially from people on this forum. My family and friends are, of course, being supportive and positive. But they don't understand how scared I am and how I am struggling. My doctors are pretty concerned about my psychological state, as this new curveball has just sent me down the rabbit hole. They've put me on an antidepressant. I hope it helps me to keep it together through all of this.

Yeah this really came out of nowhere. A few days prior to my 100 day biopsy, I noticed some brown/gray spots had appeared on my torso and back. But my docs were not very worried about them. Said if they got worse, they would biopsy them. Then, a few days after my BMB, I started losing control over the right side of my face. So my docs have diagnosed me w/ a facial palsy from the leukemia affecting nerves in my face. Then the BMB put it all together, and showed that I had relapsed.

I think yesterday, my doctor said that the 100 day biopsy showed 10% blasts. However, I had my ARA-C spinal chemo yesterday, and my blood work this morning showed 4% blasts. So I'm hoping that's a good sign.

Warrior

I am so sad to hear this news but grateful that your brother is your donor. Please know I am praying for a cure for you!

May God grant you peace

Julie

I think everyone of us on here understand your fear. I wish I had some wisdom to share with you that would help. your post breaks my heart, you are so young and shouldn't have to be dealing with this. I'm going pray as hard as I ever have for your cure. you are young and can beat this and I do know of people that have had two transplants and are doing well. keep fighting young lady, you CAN beat it.

davej

Warrior

I am so sorry to hear of your relapse and will pray fora complete remission for you. Please keep the faith and dont loose hope.

Karen

10% is not that high and it could be a sampling error. 4% is normal -- anything under 5% is considered normal. Take comfort in the fact that they are watching it closely and will be dealing with it quickly. I am convinced that most leukemia serious problems occur because of misdiagnosis or people just thinking that it is normal and taking some drugs or another couple of drinks. Even if it is 10%, that is still in the MDS area and not the AML -- which usually requires in the area of 25-30% blasts. There seem to be many options in your case, and I would not jump into anything too quickly. Since there seems to be contradicting symptoms you might ask if your current med team would mind you getting another opinion on it. In most cases they welcome this since it kind of takes the pressure off of them moving forward, especially if their DX is confirmed. So, I see these results as being quite positive as opposed to "relapse." I hope you can take some comfort in that, although we all know how hard it is. We are praying for you -- dave

Warrior -
While I'm unhappy to hear this news, I have this to tell you: YOU GOT THIS! Just keep your eye on the prize and don't let this beat you. Take this challenge head on and knock the heck out of it. You can do it! I'm thinking of you and rooting for you. xo

Warrior -- please check this out and see if your onc can get you onto a trial ...

https://www.youtube.com/watch?v=xhfaFrcnY3o

Seems very little downside.

Thanks -- dave

Warrior -

You can do this. I absolutely have seen/read of/ known of situations like yours, where 1st SCT failed and a second one was necessary. I hate that you are faced with the anxiety (perfectly understandable!) you are feeling around this new development, and I so hope that you find peace and the resolve to fight anew.

I am afraid that I have zero confidence in alternative treatments such as the couple you mentioned in your post. I hope you have confidence in your team, and that you feel like the course they have recommended for you is the right one. If you are not feeling good about their recommendations, I certainly would think it reasonable to seek a second opinion from a very well regarded hospital (Sloan Kettering? Dana Farber, the Hutchinson/Seattle?, etc.)

There is every reason to believe that a return to good health is a part of your future. You can do this.

Please let us know how we can support you.

Robin

Warrior,
I am sending many positive thoughts your way as you have to deal with this difficult news. My wife never really got into remission after 4 rounds of chemo. Now she is +34 from HSCT. Her doctors had the same reaction after looking at her bone marrow biopsy in April after 4 rounds of chemo, her main doctor teared up and told her that he had failed her. It is difficult for the Doc's to deliver that type of news, but now that we have embarked on this path they seem energetic and hopeful again. Hopefully they will rebound and you will too. Keep moving forward and take each day head on with positive energy! You are young and can beat this! Everyone on here is pulling for you!!
Take care,
Tom

Hi Warrior,

I was floored by your news, and I can definitely understand your fears. My husband received his sister's cells 66 days ago and also has no GVHD. But it is NOT your time to go. You have been so positive about your future since you joined this board, and I don't want you to lose that confidence now. You are a true fighter, and your treatment team has a plan in place to get you back into remission. And it appears these treatments have been doing their job so far.

I am very hopeful that getting off the anti-rejection drugs will allow your brother's cells to fight the leukemia. You made a very strong impression on me when you joined this board and I have been thinking about you daily. I am sending you all my (considerable) strength!

Love,
Monique

Thank you so much for your support. This month has definitely been a challenging one, so far. The biggest step has been accepting that, although my medical team and I did everything right, that my type of leukemia has been a tricky/aggressive one. But, now the best thing to do is take the hit of the failed transplant and move on to the next best step that is being offerred to me.

Beginning last Thursday, I was admitted to the hospital, received another picc line in my arm and was put on a 6 day regimen of idarubicin, cytarabine, and another chemo that starts with an F. I can't remember the name. My current bloodwork shows zero blasts in my blood! I've also received 3 lumbar punctures, because my leukemia had found it's way into my spinal fluid, causing facial nerve palsy.

My doctor informed me this morning, that the results from my lumbar puncture yesterday showed zero leukemic blasts in my spinal fluid! I do not want to get ahead of myself or expect more than my body can give me, but as of now, this is very good news. It shows that these next steps to fight are working. My face is also almost completelty back to normal. Another good sign that the leukemia is gone from my spinal fluid. I do not know yet when my next BMB will be. Because my counts are still so low from the chemo, the doctors don't think the biopsy will reveal anything good or bad at this point. The hope now is that when my counts recover, my next biopsy will show all healthy cells. I will continue to receive lumbar punctures with ARA-C infusion for several months. Doctors haven't really said whether or not I'll be receiving a DLI or second transplant.

I've realized that it's not practical to make future plans like other 25 year olds right now, in terms of jobs, grad school, starting a family. But I have learned to be happy with every day that I have, and be happy with the small successful steps my body is taking to fight this disease.

Warrior -
You are an inspiration and your attitude is to be admired. You are going to beat this and that's all you need to know right now. Take it a day at a time - everything is looking great. Keep your head in the game and fight, fight, fight. You have a lot of people rooting for you. xoxo