Acute Myelogenous Leukemia (AML) Support Group
Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.
The time for Sal's SCT has come. He will undergo an aggressive myeloablative conditioning regimen. Sal and I are going to the Stanford Cancer Center this morning, down to radiology where they will verify that the lung guards for his total body irradiation (TBI) are correctly placed, etc. Then upstairs to the infusion treatment area to get continuous IV fluids hooked up. Then we'll go home. Tuesday through Friday will include daily TBI (3X per day). Like our hero Cliff (xuelan), Sal's testes will be irradiated (yikes!) to kill any leukemia stem cells that may be hiding in that sanctuary. Saturday he will be admitted to the hospital and receive a very strong chemo, etoposide (VP-16). He will receive his sister's cells on Tuesday, April 29, another birthday.
Is Sal nervous? Not so much. After seeing our wonderful and brilliant transplant doc Dr. Wen-Kai Weng on Friday afternoon, Sal was feeling excited for it to start! Heck, I was almost wishing I could do it. (Weird, I know. But that's how much faith and positivity emanated from Dr. Weng!) We know that this is a chance for a cure, and we trust our doctor. What a blessing.
Thanks go to all of you for the support you have shared with us and others here. There were many nights when Sal felt consumed with anxiety about his relapse. I would read him some of your posts, and he would begin to feel calm enough to drift off to sleep. Thank you.
I will try to keep this updated. If you have any questions at all, don't hesitate to ask!
Monique
Is Sal nervous? Not so much. After seeing our wonderful and brilliant transplant doc Dr. Wen-Kai Weng on Friday afternoon, Sal was feeling excited for it to start! Heck, I was almost wishing I could do it. (Weird, I know. But that's how much faith and positivity emanated from Dr. Weng!) We know that this is a chance for a cure, and we trust our doctor. What a blessing.
Thanks go to all of you for the support you have shared with us and others here. There were many nights when Sal felt consumed with anxiety about his relapse. I would read him some of your posts, and he would begin to feel calm enough to drift off to sleep. Thank you.
I will try to keep this updated. If you have any questions at all, don't hesitate to ask!
Monique
Debbie
I am so happy this day has finally come. Both of your attitudes are an inspiration. I had my three month check up today and was to meet up with a gentlemen who had relapsed at two years and was getting his BMT while I was getting my induction. He is doing amazing. He said he keeps waiting for a shoe to drop because he has not had a single complication. He had full body irradiation and I remember walking the hall with him during this process. Although I have not encountered a BMT, this group makes me feel like I could through anything. Sal is going to be another success story that others will look to in the future for hope. Praying for an outstanding outcome.
Blessings,
Julie
Julie
Sorry for the disappearance. i am so happy that Sal is finally going to be able to put this all behind him. This will be the last annoyance and then it is all upward to good health. Tell Sal not to worry about testosterone levels after the testicular radiation boost. They are not affected.
How are things going so far? My prayers are with both of you, even though he shouldn't be needing them!
Cliff
Sal is doing so well. Finished all radiation, just a tiny bit tired. No other bad effects. We are waiting for a call from the hospital with a room in the transplant ward. He will receive his chemo etoposide (VP-16) today, then rest until Tuesday's transplant.
We have been seeing Sal's sister each day getting her Neopogen shots, getting ready for Monday's harvest.
When did you start feeling a sore mouth and throat?
Big hugs,
Monique and Sal
I am glad to hear that Sal did well with the radiation. I hope he was singing during it (like I did) or I will be very disappointed. LOL. My family is in Montreal. My wife and eldest daughter drove my son back there, where he is working for his PhD. Next year, he will be back in the US for medical school. I hope it is close by. I miss seeing him and got spoiled from his recent visit.
Did Sal get Palifermin before the radiation? That puts a weird coating in the mouth, but protects it from sores. Sadly, the throat and esophagus are not protected. I got the sores after I had already received the transplant. I actually had to use IV painkillers for a few days. Make sure they make up a mouth wash with sodium bicarbonate for Sal that he can rinse and gargle with, It helps. Make sure that Sal eats as much as he can right now. Kind of like storing it up for a winter hibernation. If he has to go on TPN, don't sweat it. That will be very temporary. Most of all, don't anticipate problems. Just go with the flow.
Love you back,
Cliff
Cliff, I don't believe Sal received Palifermin before or during his radiation. I hope he doesn't develop too many mouth sores. They are keeping up with his mouth care, though, with the sodium bicarbonate.
You are all in my thoughts. Thanks for all the support!
Monique
Sal received his transplant on Tuesday, 4/29. All went well, and he is still pretty well. He has had a bit of nausea and diarrhea the last couple of days, but it has been relatively minor. No mouth or throat sores. Not a big appetite, but not starving himself.
Things are going very smoothly so far. I was expecting worse at this time, but glad the way things are.
To those who have had SCT, when is the "rough time" after transplant, generally? He seems to be doing as well as Julie's hospital friend she mentioned in her post: waiting for a shoe to drop, but all is quiet.
Monique
Dave J.
Do not anticipate issues, although most of us have experienced some throat discomfort and eating issues within the two weeks after transplant. The comforting thing about it, is that Sal can begin to distance himself from the whole AML torture regime. No more consolidations, conditionings etc. That will sustain both of you no matter whether there are a few annoyances to come in the short run. Tell Sal to eat whatever pleases him. The idea now is to maintain caloric intake, preferably with a good dose of protein (eggs etc.). As Dave J. said, it is probably the rule to have an altered sense of taste for quite a while after transplant, which can really do a number on one's appetite. I didn't try supplements, but Lori gave Keir Boost (or the like), which he seemed to tolerate and that added nutrition. It took me about 6 months to get my taste back to normal. I have to say, it was nice being very thin for a while....oh well!
Things sound as if they are on course for Sal, and Dave J., you will soon be really enjoying food again.
Cliff
Dave J.
Dave, I hope your taste buds come back to normal soon. I'm really glad you joined our group.
Cliff, you're the best! Thanks for your continued support and advice.
xoxo
Monique