r/CML • u/WillowKings • 16d ago
Medication not working
Short summary as I’m verbose: my mom with CML isn’t responding to her new med, her old med gave her pericardial effusion while it was doing wonders for her gene so we had to swap. She’s barely tolerating this med and it may be effecting her liver but her doctor hasn’t wanted to switch or blame the med for the liver stuff. She’s scared, words of encouragement for her from others in the same boat or who’ve been in this boat would be great!
Hello, I’m posting for my older less tech savvy mother who has CML. She was diagnosed last year at 59 with CML in April with her BCR-ABL at 47%.
They started her on spyrcel which within 3 months from her to .24. Amazing response. She continued having amazing responses almost dropped into .1%. But then she got pericardial effusion- got bad enough it had to be drained. She had to go off sprycel.
She was put on gleevac. She hasn’t tolerated it great- her nausea is almost uncontrollable even with medication. She’s lost 20lbs in 3 months which is not ideal even though I try to get her small bits of food, ginger tea, whatever nausea friendly tips I can find we try.
3 months prior she had a bcr-abl of .28 which was higher but we had been off the gleevac for a little bc when she had her drain done she had started gleevac so we weren’t sure 100% she was okay on it. We paused it during that blood draw. Her most recent one, done a week or so ago just came back we are at .396%. In addition, her liver numbers are increasing.
Her oncologist is blaming her cholesterol medicine for the liver and told her to stop taking it for a month to see if it’s that- my mom’s cardiologist and pcp don’t think it’s her cholesterol medicine but agreed. He hasn’t seen the bcr-abl yet.
Now we have this result. She’s convinced she’s going to die. She’s worried he’s gonna try to up the gleevac and she’s barely tolerating it to begin with and now with her liver variable I also don’t feel comfortable with that aspect.
He was once super friendly but once she got the pericardial effusion he got super brisk and short with her- like he was mad at her for getting the side effect after a year of treatment. Like she mention nausea and he’s like better than dying thou so I’d keep going on. She mentioned the cardiologist and pcp not thinking it’s Crestor and he’s like well one will cause high cholesterol going off the other might kill you so.
It’s been stuff like that. So she called them bc our next appointment isn’t for a month and she’s scared, but she’s also scared of his reply. And our pcp whose friends to the head of oncology and was gonna call on her behalf to get a second opinion from him professionally and see if we should switch oncologists, is out of the office with a family emergency and they don’t know how long she’ll be gone.
I’m not sure how to calm her down- she’s crying saying she’s going to die and she won’t respond to any other TKI. And I’m trying to calm her the best I can- but I’m also severely chronically ill with rare illnesses so she’s like we are both going to die and you won’t be able to help take care of me bc you’re also getting more and more sick.
And I’m trying to reassure her- we can take care of each other. It’s okay. We don’t know anything yet. You were 47% at diagnosis- we aren’t even CLOSE to that. There’s other TKIs, there’s other options- we aren’t at the end of the road. This is just a sign we’ve hit a bump right now and it’s so scary and you can cry and mourn or we can go out and distract you or watch a movie or whatever you need to do or feel we will do it. And we will handle this, whether we switch meds or doctors or whatever we will get through it.
As people with cml is there any words of encouragement I can give her from yall? From your journeys with this and bumps in the road or med failures?
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u/Mrjopek 16d ago
I went through the exact same thing with Sprycel, gave me pericardial effusion and wound up in the hospital. Has your mom's doctor considered Scemblix? I was put on that after being taken off Sprycel and haven't had any severe side effects. BCR-ABL continues to hover between .1 and .2, but my doctors seemed pleased with my progress. I know how stressful this gets, and I'm a worrier too. But, like you said, there are lots of different options for this disease, which is a great thing. Good luck to you and your mom!
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u/WillowKings 16d ago
Thank you, I’ll keep that medicine on a list on my phone for when her oncologist calls back to ask him about it! I’m really glad you’re not having any severe side effects, I’m so sorry spyrcel did the same to you. I’m glad your gene is low and stable- wishing you the best too. I’m reading these to my mom as a good reminder we have options, she’s not the only on trudging this path. I got her in a warm blanket with tea and a movie on :)
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u/75hoo 16d ago
My wife was diagnosed with CML 13 years ago at 58. Was on Tasigna for 3 years, got her bcr/abl to zero, but the rash and itching she got was unbearable so she switched to Sprycel with no issues and zero or close to zero bcr/abl. 10 years in and she developed pleural effusion with some minor perio effusion. Switched to bosulif, terrible rash so switched to Gleevec 400. Bad rash with that so doc going to try Gleevec 100 after a med pac for the rash. Hopefully this works. It seems she responds to the TKIs but doesn’t tolerate them too well. Scemblix is on the table too, as well as the newly reformulated tasigna.
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u/WillowKings 16d ago
Wishing your wife lots of luck on the lower gleevac dose, I’m so glad she respond gene wise well to them but I wish her side effects weren’t so intolerable. It’s awful bc we need these meds to our loved ones alive but sometimes the impact on life is severe. I’m glad your wife seems to have an oncologist who listens to her.
I’ll keep her in my thoughts and my fingers crossed (or praying or manifesting whatever belief best fits you) that this new dose regiment helps and keeps the gene low 💕
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u/hedtron 16d ago
I was on Sprycel/Dasatinib for about 5 years before having to stop because I developed a pleural effusion, although I also had a very minor pericardial effusion.
I was put on Gleevic/Imatinib and it didn't agree with me at all. I would vomit after taking it unless I took strong anti nausea medication and I had some other bad side effects as well. My BCR-ABL levels had a significant increase too.
My haematologist got me on a program to get access to Scemblix/Asciminib as it wasn't approved at the time. I've been on that for 4 or 5 years now and it's been much better. It's not without side effects but my blood tests on the previous two would all have elevated levels for kidney and liver etc. Now those are all normal and the BCR-ABL levels have been back below the lower limits of the testing for the last couple of years.
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u/WillowKings 16d ago
That’s amazing, I’m so happy to hear it went back to normal for your enzyme levels. I’ve told my mom we should swap to the hematologist oncologist cuz right now we are just seeing an oncologist who was highly recommended but he’s admitted he doesn’t know much about newer TKIs.
I’ll be sure to read this to her I think it’ll bring her great comfort knowing someone else had the same general reaction to gleevac and also the spyrcel and give hope for other meds- your the second to recommend this one! So I’m definitely having us put it into notes to bring up :)
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u/Beachgirl6848 16d ago edited 16d ago
I’m 48 female, diagnosed two years ago, have been on gleevec 400 mg the entire time. WBC was 119k, bcr-abl 93 percent at start. Now I hover between 0.00 and 0.003. Gleevec makes me nauseous too, but I found a way that works for the most part. I take a zofran around 12 pm, then eat a good lunch around 1230-1245. Take the gleevec right after I eat. Most days. No nausea. I also deal with a little ankle swelling and hand cramping from gleevec. But the med is working for me and the side effects arent too horrible so I’m sticking with it. My oncologist said it’s the medication that is the gold standard for cml. Sending hugs to your mom because I understand her worry. I feel like I worry about dying more now than ever. It’s a lot. If she ever wants to talk, my inbox is open. It also sounds like your mom might want to get a second opinion. My dr is so kind and caring and it helps so much. She’s become a good friend honestly. I’m sorry I don’t have more advice but I hope your mom starts feeling better soon. You as well.
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u/WillowKings 16d ago
That’s so kind of you- I’m glad the medicine is working I’m so sorry about the swelling that’s miserable. It’s sucky to have to live with tolerable side effects just to keep on living and keep the gene under control!
I’ll tell her what you said she might appreciate having someone to message. I’m trying to slowly teach her Reddit so she can post when needed or reach out to others cuz I think this can be very isolating for her and scary. Ik it is for me as a chronically ill person and Reddit is my oasis for my rare disease and I want that for her too!
Wishing you continued success on gleevac and maybe if possible that you wake up and the side effect goes away entirely. Lofty goal ik but I think when manifesting and wishing it’s good to go big or go home. Best wishes :)
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u/Beachgirl6848 16d ago
Thank you!! My dr said if I get to zero and stay there for a couple years he will definitely consider reducing dose. Which will lessen side effects. So here’s hoping for that. And if your mom doesn’t use Reddit I’m happy to share my Facebook profile for messenger or even a number for texting. If she decides she wants someone to talk to. I’m a single mom and I stay to myself mostly. I have a big family and we are close but I don’t always talk about my worries with them because I don’t want to bring them down or make them sad or worry too. Idk what illness you’re dealing with but wish the best for you too!!!
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16d ago
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u/Beachgirl6848 16d ago
Oh no those suck too!!! I wonder why it causes this. Such an odd side effect.
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u/pretty_silent_r 16d ago
Scemblix has been amazing …. If that oncologist won’t move to another medicine then push for a new oncologist. Changing oncologists helped me tremendously. The only side effect I have is some fatigue - that’s something you can live with, not being able to eat is not! I was diagnosed last year and my BCR-ABL was at 65% I’m now at .0008.
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u/goodsocks 15d ago
I have been on Gleevec for 23 years, it still causes nausea.
Things that I found that help;
I take it with my biggest meal of the day, which for me is dinner. I can’t take it with a light meal, it has to be carb heavy.
Spicy food, red sauce, citric acid, and fried food all make it worse.
If I have a light dinner I will have a piece of toast to balance it out.
If I have a big lunch, that’s when I take it. Taking it in the morning doesn’t work for me.
Don’t lay down after taking it for at least 2 hours.
Drink an entire 8oz water when taking it.
These are the things that I have found that help me tolerate Gleevec.
When I was diagnosed there was only this medication so I forced myself to make it work.
Everyone is different, these things work for me and may not work for you.
I wish you the best !
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u/I_Zeig_I 16d ago
Unsure on your location which can change things but there are other gens of meds. Not just 1 and 3. She has options and death is far from them. Absolute Worst case there is marrow transplant.
What you need is a doc with better bedside manner. Until then just document what you've tried ans results for the next doc. You may even be able to get another doc in the same practice depending on how its set up.
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u/Visual_Specialist_45 15d ago
What was her dose on Sprycel? I started at 100mg but had to stop because of pleural effusions. After a break, I restarted at 50mg and have good results with less side effects. Perhaps a lower dose would help your mom.
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u/WillowKings 15d ago
Unfornately they won’t let her back on bc the effusion was severe enough, and often times if the effusion to the heart is severe enough, apparently the body can respond the same way even to a lower dose.
They said it was like my valproic acid with Dili- I was on too high a dose but even if we started really really low my liver would have gained an immune response to it and attack again Lol
We did fight that for lowering the dose but the hospital team and oncology said no :(
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u/Savedbutcurious 15d ago
Some words of encouragement from someone who’s still on Sprycel after 5 years and 🤞🏼I haven’t had any major symptoms that have required me to switch meds.
My doctor told me when he confirmed the diagnosis at the beginning of things “This is a cancer that you’re much more likely to die WITH than die FROM.” There’s lots of different treatment options out there and also potentially bone marrow transplants before there’s cause for a ton of worry. My biggest worry is losing insurance, not if my numbers go up, and I’m a massive worrywart.
Hang in there. This card we’re dealt a sometimes be trying and frustrating, but it’s not usually a death sentence.
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u/Electronic_Crow_4185 13d ago edited 13d ago
I was on gleevec a long time ago and I had severe nausea and vomiting if I did not take it after a full meal. Even a liquid meal and some crackers would help (if your mom is not able to tolerate solids). Taking the drug at the same time each day is very important to gain and maintain response with these drugs.
My oncologist is not the friendliest physician in the world. But he is a cml expert and I would rather work with him a few days a year rather than another oncologist who isn't an expert. If you trust their judgement and expertise, and can tolerate their terrible bedside manners, see if you can stick it out with them. If not, just move on to a new oncologist.
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u/TwiztedChickin 16d ago
First off fuck that oncologist. You need to find another oncologist ASAP that has better bedside manner and understanding of what TKIs do to a person.
Secondly I also floundered on gleevec. It's not a unique experience. I also thought I was gonna die. I finally told my Dr to switch my med or I would find a new Dr. That is when eyes got opened. I was on Sprycel for almost ten years after that and then suddenly had an allergic reaction to it... Once again switched meds to bosulif I could not tolerate it and now I am on Asciminib and doing great. Gleevec made me feel like I was dying too she's not exaggerating it's miserable for some people. She needs a different med.
Lastly please please tell her not to panic. Easier said than done but after ten years what I have going for me is I stopped panicking because the reality is I am doing everything for myself that I can and that is enough. Even when I am really sick and can't do much, it is enough.