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Does anyone else have AML with ddx41 genetic mutation?
Blood Cancers & Disorders | Last Active: Feb 19 10:27am | Replies (18)Comment receiving replies
Hi Lori - yes, we have identified a potential unrelated donor with 10/10 match. My sister was a match too, but we had of course to search for an unrelated one given germline origin of my DDX41. The HSCT is going to be an important challenge with GVHD, chimerism, NRM, etc. My doctor told me that the most common reason for the latter (NRM) is our own (normally harmless) gut bacteria. Whether any known solution to this problem - other than generic prophylactic antibiotics?
At the current stage however, the most important decision for me is whether to start the chemo treatment (venetoclax + azacitidine) now or delay given no any symptoms and good overall physical condition. Despite substantially lower levels of WBC (especially neutrophils), I don’t seem to be more vulnerable to pathogens in practice than people around me. Since I was diagnosed 10 months ago, I continue my daily work in the office, taking busy public transportations, flying long and busy flights, doing shopping, socialising and even doing sport. My life is almost BAU - other than my regular hospital visits and abnormal blood readings. However, I know a number of things may go wrong once I start the treatment - and there is no way back. I do understand that the treatment is unavoidable in order to have a chance of remission and potential longer life, but the question is when?
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Hi @igorp It sounds like you’re getting all your ducks in a row for a possible bone marrow transplant. Having an unrelated donor would be preferable in your case so it’s great that you have a match.
As for side effects post transplant, almost everyone has some gut related issues the first couple of weeks due to the preconditioning chemo. Many types of chemo interfere with rapidly dividing cells, which include cancer cells. Unfortunately there are other rapidly dividing cells in the body which become collateral damage such as the digestive system-from mouth down to the exit! The normal gut biome is also impacted so it can be a struggle.
One item that helped me immensely throughout my intensive AML treatments and the SCT was eating Greek yogurt daily with a teaspoon of ground flax mixed in. Also, during this time you may want to avoid dairy products which contain lactose. Lactose free products can help eliminate one source of inflammation. A caution though, no probiotic supplements!
It’s understandable to be concerned about all things related to the BMT (SCT) but if I may, try not to get too wrapped up in the potential side effects. Most of us who have undergone an allogenic transplant, will experience ‘something’ post transplant.
The main goal of the transplant IS to have some form of reaction to the new stem cells….gvhd. Think of it as graft vs leukemia. The newly implanted cells become your new immune system! Your old immune system no longer recognizes the leukemic cells. So the cancer cells can proliferate unchecked. The intention behind getting the new immune system is to recognize the cells as leukemic again. So if they reemerge after treatment, the new cells attack the cancerous cells and your life goes on…the cancer doesn’t. To do that you need to have some level of graft vs host event.
You have a big decision ahead on whether starting treatment or waiting. Those are good questions to work through with your doctor/bmt team. At 58, you’re still very young. If treatment can be delayed, they may suggest waiting until you actually need to go ahead with ‘the program’. It’s not unusual for people to have a BMT as late as their early 70s. If you can avoid it until later, that may be an attractive option.
It’s really difficult to make this decision when you’re feeling healthy and energetic. What’s your gut feeling?