Hello all,
I've just discovered your message board, and it seems wonderful. My boyfriend was diagnosed with AML in April after a month and a half long experience of biopsies and taps and scans to determine the cause of the large swollen glands that appeared on his body in early March. The doctors thought HL, then NHL, and now AML.

At present, my sensitive, loving boyfriend, who is 27 years old, is receiving in-patient induction chemo, and going through hell (as expected, I know). I am finding it so difficult to go on with my life as normal as he suffers so immensely. I feel obsessed with what is happening to him; how can I become comfortable living with so much uncertainty about his (and my) future? In darker moments, reading about prognoses for this disease on the Internet has made me feel somewhat discouraged about his chances.

I would appreciate any advice that survivors or patients/ caregivers who have some experience with this disease can give me. My friends and family are being great; still, it is difficult to feel that there is no one in my position around to talk to about this shocking situation. Thank you. --Jenn

I understand what you are going through although it is my friend and not boyfriend or spouse with AML. My friend is at City of Hope and Duarte, CA receiving her first vial of bone marrow today. She was diagnosed in November and has gone throught the hell you are talking about. Her second dose of chemo put in her remission and a bone marrow donor was found about 2 months ago. One word of encouragement to you....my friend has a nurse who had AML and a bone marrow transplant 27 years ago and is still very much alive and treating patients going through the same thing he did. I know my friend has some very bad days ahead of her, but at least she knows there is a good possibility that this will lick it and she can go on with her life. Hope your boyfriend has the same luck she had and a bone marrow donor is found if he needs one.

So sorry to hear your boyfriend was diagnosed with this disease. When I was diagnosed in September 2001, we also were somewhat downhearted about the 40-50% prognosis (I was 15 at the time). It's been about 20 months since I was diagnosed and I'm still in a full remission. I had 7 months of chemotherapy followed by a bone marrow transplant in May 2002.

Thanks for your replies -- both of you. My boyfriend is probably going to be getting a BMT in the next month or so. Can you tell me more about what this process was like from the inside (we're hearing such scary stuff from the doctors about what this process will be like...)? How long did it take you to recover? I know you have to be isolated from germs for a long time even after you return home from the hospital. But, when did you remember starting to feel a little bit better after your BMT? How are you feeling now? I am so glad to hear you are doing well and still in remission.

Any info would be greatly appreciated!

Thanks so much,
Jenn

Thanks for your replies -- both of you. My boyfriend is probably going to be getting a BMT in the next month or so. Can you tell me more about what this process was like from the inside (we're hearing such scary stuff from the doctors about what this process will be like...)? How long did it take you to recover? I know you have to be isolated from germs for a long time even after you return home from the hospital. But, when did you remember starting to feel a little bit better after your BMT? How are you feeling now? I am so glad to hear you are doing well and still in remission.

Any info would be greatly appreciated!

Thanks so much,
Jenn

I'll try to answer your questions as best I can.


Can you tell me more about what this process was like from the inside (we're hearing such scary stuff from the doctors about what this process will be like...)?

The doctors are right, the process is no picnic, it's pretty tough. The drugs had some pretty bad side effects, the worst I got having been mouth sores that were really painful. At chemo that high dose, there are usually all the classic chemo side effects, but worse.

I was in the hospital for the BMT at total of six weeks, several days of pre-BMT testing on my brother, who was my donor, and myself. I also had 10 days of intensive chemo done to destroy my bone marrow and get rid of any lingering cancer cells. After the actual transplant, I engrafted after two weeks at was allowed to go home on day 29. A lot of how the transplant will go depends on your boyfriend's general health, the type of transplant he is getting, etc. Mine was a classic bone marrow donation since my brother, being 13 at the time of donation, is under the age doctors gather stem cells from the circulating blood for a periphial blood stem cell transplant.


How long did it take you to recover?

Fully, about 8 months. I had made some significant recovery by 4-5 months out though. The doctors say the timeline for recovery is about six months to two years, immune system function counted in there. I've been back at school full time since January and I've had a part time job since then, with my doctor's approval. I still get days where I feel more tired than I used to, but I can now get through the day without having to nap and I'm doing the activities (sports and exercise, shopping, etc) I was before this all started.

I know you have to be isolated from germs for a long time even after you return home from the hospital. But, when did you remember starting to feel a little bit better after your BMT?

I was isolated from germs for about 120 days total, so that was about till the end of September 2002. It was after that I was allowed to go into public without a face mask, but still was told to keep that and visitors to a minimum. I was allowed to return to school on a part time basis in October. I remember feeling better about 3 months after the transplant in August. That's when I was able to carry out activity anyway for longer periods of time.

How are you feeling now?

I feel overall pretty good, as healthy as I ever did.

I'll try to answer your questions as best I can.


Can you tell me more about what this process was like from the inside (we're hearing such scary stuff from the doctors about what this process will be like...)?

The doctors are right, the process is no picnic, it's pretty tough. The drugs had some pretty bad side effects, the worst I got having been mouth sores that were really painful. At chemo that high dose, there are usually all the classic chemo side effects, but worse.

I was in the hospital for the BMT at total of six weeks, several days of pre-BMT testing on my brother, who was my donor, and myself. I also had 10 days of intensive chemo done to destroy my bone marrow and get rid of any lingering cancer cells. After the actual transplant, I engrafted after two weeks at was allowed to go home on day 29. A lot of how the transplant will go depends on your boyfriend's general health, the type of transplant he is getting, etc. Mine was a classic bone marrow donation since my brother, being 13 at the time of donation, is under the age doctors gather stem cells from the circulating blood for a periphial blood stem cell transplant.


How long did it take you to recover?

Fully, about 8 months. I had made some significant recovery by 4-5 months out though. The doctors say the timeline for recovery is about six months to two years, immune system function counted in there. I've been back at school full time since January and I've had a part time job since then, with my doctor's approval. I still get days where I feel more tired than I used to, but I can now get through the day without having to nap and I'm doing the activities (sports and exercise, shopping, etc) I was before this all started.

I know you have to be isolated from germs for a long time even after you return home from the hospital. But, when did you remember starting to feel a little bit better after your BMT?

I was isolated from germs for about 120 days total, so that was about till the end of September 2002. It was after that I was allowed to go into public without a face mask, but still was told to keep that and visitors to a minimum. I was allowed to return to school on a part time basis in October. I remember feeling better about 3 months after the transplant in August. That's when I was able to carry out activity anyway for longer periods of time.

How are you feeling now?

I feel overall pretty good, as healthy as I ever did.

Thanks for your replies -- both of you. My boyfriend is probably going to be getting a BMT in the next month or so. Can you tell me more about what this process was like from the inside (we're hearing such scary stuff from the doctors about what this process will be like...)? How long did it take you to recover? I know you have to be isolated from germs for a long time even after you return home from the hospital. But, when did you remember starting to feel a little bit better after your BMT? How are you feeling now? I am so glad to hear you are doing well and still in remission.

Any info would be greatly appreciated!

Thanks so much,
Jenn

Can you give us an update on your boyfriend as it's been many months?

Can you give us an update on your boyfriend as it's been 6 months or so since you last wrote?

I usually post on the Leukemia and Lymphoma message board where Jenn used to post. I saw the last question and wanted to respond, as I don't know when or if Jenn will post again. Her boyfriend, Ian, did not survive his transplant and passed after a long struggle with septic shock in (I think) late December. She was (of course) very distraught after she posted and we have not heard from her since. Jenn, if you are out there, we all still think about you and hope that you are seeking the support that you need to get through this very difficult time.

Erika

I usually post on the Leukemia and Lymphoma message board where Jenn used to post. I saw the last question and wanted to respond, as I don't know when or if Jenn will post again. Her boyfriend, Ian, did not survive his transplant and passed after a long struggle with septic shock in (I think) late December. She was (of course) very distraught after she posted and we have not heard from her since. Jenn, if you are out there, we all still think about you and hope that you are seeking the support that you need to get through this very difficult time.

Erika

I'm so sorry to hear Ian passed and didn't beat this damn battle. How sad and heartbreaking. I send you my condolences and prayers you remain strong.

I'm sorry to hear this.