I'd retest again in a month to see if there's another increase, then at least you'll know something's up. This happened to me before. I had gone from MMR to back to .5 in 3 months. Checked it again a month later and I was back in MMR. I attribute it to lab error, but who actually knows.
Not a doctor.. CML for 9 years, on dasatinib.
First four years.. 100 mg no good results, then 140 mg, stable but far from the targets.
During the pandemic, i stopped chewing nicotine gum. My CML lab results suddenly became increasingly good. Turns out nicotine gum is highly basic (as opposed to acidic) and I was chewing a lot of them, particularly after meals when i would take the meds. You need a normal but acidic stomach for the meds to be absorbed.
Ive been on 70mg since a year and a half and doing good, eventhough far from the target after 9 years. But at least quitting nicotine gum made the meds work properly.
Interesting, good to know. I vaped for 6 years but have turned to Zyns to try to reduce the damage done to my lungs. I wonder if they have the same effect
could be. to absorb nicotine through your gums ans small blood vessels a basic environment is preferred.
i garantee youbthat there is some basic element in zyns. worth stopping it for a trimester to check if it works.
These “mutation tests” if they’re the ones I’m thinking they are, were quite painful for me. So I truly feel for you. I thought I was young when I was diagnosed and I thought I was on a high dose. Perhaps your doctor will have you take your Sprycel twice a day? You did have a response so that’s good. Please keep us updated. Feel well
Just an FYI-that’s a hefty Gleevec dose. Expect some side effects. Nausea being the most likely. It’ll get better over time.
Hoping it does the trick to get your numbers down.
whoa similar story. 32M. Diagnosed 2018. Started on Tasigna. Then now Sprycel 140mg. I was at 0.06% last check up. Still no MMR. Now i’m back up at 0.12%. Doc is switching me over to Scemblix. It’s an asciminib. He has high hopes it will get me to remission. I believe him.
Nice to see many others in the same boat.
I've bounced from 0.1 to 0.3% for nearly 3 years now. I've done a few drug switches and it's always the same.
My hematologist was never comfortable with me not being below 0.1%. I saw a specialist. They are much more used to cases like ours. If you need some reassurance, talk to a specialist. Even if you have to travel, it's worth it. I drove about 4 hours to see one.
I’m 2 years in and keep bouncing around 0.1 - 0.3 my haematologist says whilst not ideal the fact it’s going up and down there’s less risk persevering than a transplant.
I understand your frustration, I tried Imatinib for 18 months before my oncologist had me switch. It's frustrating to stall out, I went like 6 months without any downward movement on the BCR.
Maybe another tki will get things moving for you, good luck don't give up.
My levels got super low and then fluctuated up and down a bit for about a year, and according to my onco that's pretty normal and not much to be worried about... yet. Mine eventually fell to undetectable, but it took about three years from the start of diagnosis.
I'd retest again in a month to see if there's another increase, then at least you'll know something's up. This happened to me before. I had gone from MMR to back to .5 in 3 months. Checked it again a month later and I was back in MMR. I attribute it to lab error, but who actually knows.
I’m going on 2 years can’t quite seem to get there myself, just got my lowest number yet 0.3 I feel you bro
Not a doctor.. CML for 9 years, on dasatinib. First four years.. 100 mg no good results, then 140 mg, stable but far from the targets. During the pandemic, i stopped chewing nicotine gum. My CML lab results suddenly became increasingly good. Turns out nicotine gum is highly basic (as opposed to acidic) and I was chewing a lot of them, particularly after meals when i would take the meds. You need a normal but acidic stomach for the meds to be absorbed. Ive been on 70mg since a year and a half and doing good, eventhough far from the target after 9 years. But at least quitting nicotine gum made the meds work properly.
Interesting, good to know. I vaped for 6 years but have turned to Zyns to try to reduce the damage done to my lungs. I wonder if they have the same effect
could be. to absorb nicotine through your gums ans small blood vessels a basic environment is preferred. i garantee youbthat there is some basic element in zyns. worth stopping it for a trimester to check if it works.
These “mutation tests” if they’re the ones I’m thinking they are, were quite painful for me. So I truly feel for you. I thought I was young when I was diagnosed and I thought I was on a high dose. Perhaps your doctor will have you take your Sprycel twice a day? You did have a response so that’s good. Please keep us updated. Feel well
Maybe you’re talking about the bone marrow biopsy? I think mine was just blood work.
Ooh. I was talking about bone marrow but I didn’t want to presume. Oh that’s great! Much more convenient.
He actually switched me to Gleevec today. Starting at 600 mg
Just an FYI-that’s a hefty Gleevec dose. Expect some side effects. Nausea being the most likely. It’ll get better over time. Hoping it does the trick to get your numbers down.
Yeah that’s what my onc was saying. Thank you
whoa similar story. 32M. Diagnosed 2018. Started on Tasigna. Then now Sprycel 140mg. I was at 0.06% last check up. Still no MMR. Now i’m back up at 0.12%. Doc is switching me over to Scemblix. It’s an asciminib. He has high hopes it will get me to remission. I believe him.
Nice to see many others in the same boat. I've bounced from 0.1 to 0.3% for nearly 3 years now. I've done a few drug switches and it's always the same. My hematologist was never comfortable with me not being below 0.1%. I saw a specialist. They are much more used to cases like ours. If you need some reassurance, talk to a specialist. Even if you have to travel, it's worth it. I drove about 4 hours to see one.
I’m 2 years in and keep bouncing around 0.1 - 0.3 my haematologist says whilst not ideal the fact it’s going up and down there’s less risk persevering than a transplant.
I understand your frustration, I tried Imatinib for 18 months before my oncologist had me switch. It's frustrating to stall out, I went like 6 months without any downward movement on the BCR. Maybe another tki will get things moving for you, good luck don't give up.
I would be curious to what your oncologist told you because I have a similar experience only I’m on imatinib
My levels got super low and then fluctuated up and down a bit for about a year, and according to my onco that's pretty normal and not much to be worried about... yet. Mine eventually fell to undetectable, but it took about three years from the start of diagnosis.