Anyone else on Daraxonrasib (RMC-6236)?

@aparrish01 I hope his rash resolves soon. I understand his hesitancy for the dose reduction. My mom had to due to her lab counts.

Ty.

My hubby has been on Rasonque for 30 days now. He got the rash and it got bad after about 10 days. Nose had bleeding scabby sores...but we pressed on using Antibiotic Dixonc. and 2 topical meds with cordizone and antibiotics in them....after about 6 more days his nose and rash started to improve and he is now very comfortable yet still on the 300 mg a day. We use a little foundation makeup on his red nose and he looks almost normal now so the meds are working and we are informed we will/can stay on the antibiotics forever if we want.
AS FOR THE RASONQUE....YIPPEEEE......outside of the rash, we have NO side effects, no nausia or diarrhea, no pain anywhere, slight case only of fatigue (he is 80 yrs old so expected anyway), no nurapathy, nothing to worry about. He does take an anti nausia pill 30 min before the rasonque at night and a prilosec for reflux a day which has totally kept the mouth sores away.

...NOW THE GOOD NEWS.....and yes I am speaking in terms of one thousands.....
He was diagnosed pancan/stage 4 lung involvement some 23 months ago. He underwent 32 treatments of chemo standard drugs once ever 2 weeks for thee 22 months...his CA19-9 blood went from 6100 when diagnosed in 10/2024 to go to 17500, yes thats 17,500 just days into starting the pills......Now the good news, as of Wednesday 2 days ago, and after 30 days on the pills he is now back down to only 5500 ca19...that is lower than he was when diagnosed 23 mos ago...and a 65% reduction in this number since the start of taking the pills just one month ago....At this rate he should out live us all!!!!!
FIRST....about 85% of all rasonque patients get a rash to some degree, with about 15% getting a severe case. Do not dispare. He chose to keep going on the pill, and it paid off...There is a new dermatology sub specialty called onco-dermatology, ...doctors who are specializing in hair, nails, and skin rashes and problems due to the toxicity of chemo, growing in number of doctors as more cancer treatments like immunotherapy and now daraxonrasib come into the treatment world. So if you have a rash and are going to a "large " cancer center ask if they have one of these onco-derms and check dermatology centers in your area for someone who is now specializing....we did and found one that offered some medicines our oncologists didn't know of. Remember the oncologists are learning as they go also.

SECOND: cost of pills, no matter what Advantage plan or drug plan you have, Medicare is currently paing about $32000 a month for the pills, and YOU if you are retired and on medicare and a Drug plan will be expected to pay your total out of pocket for the year just one time at around $2400....thats for the year so prepare to pay about $200 / month for the pills no matter what plan you have if you are retired. If you are on a commercial plan at work, I cannot speak to you about the cost, but I suggest you find out as soon as you apply to receive the pills. Your doctor should be able to help you with this.

It's working for us as we move to 2 yrs in, and even at 80 my husband feels like he did 5 years ago, all due probably to the new pill and getting off the old chemo....will his success continue....no one knows....except GOD and my money is on him.
Write me with any questions or comments
marlene tobin

@witchypooy
Hello, glad your husband is doing so well. My husband has a recurrence and is now stage 4, he just started taking Rasonque on Tuesday so he has no side effects yet except for some slight diarrhea. He was prescribed the pills and creams to prevent/address any side effects. However, could you let us know what pills the oncodermatologist also prescribed to treat the rash? Just trying to be prepared. Thanks

If he is on perscribed doxycycline antibiotic daily for rash.. Started before the rash and will be taken as we were told "forever" ...he should take an anti nausia pil like ondansetron perscribed and taken about 30 min before the rasonque. We were told to use as necessary but he takes it pre rasonque and every day. He has had NO nausia...My husband uses an over the counter anti diarrhea pill when needed....as to the rash itself he uses a perscribed topical antibiotic cream and a topical cordizone both as perscribed.

The dermatologist told us to keep the face moisterized at all times as well as using the perscribed creams...we use certaphil but you can use cevie or any good over the counter cream...just make sure to keep face, neck moist to keep the rash from coming...it will come but will be less sever...
And finally mouth sores are very common.....we use a garlic twice a day morning and night of our own make up...1/4 teas salt, 1/4 teas baking soda and 1/2 cup warm water....doctor says this is fine and good...reg mouthwash can't be used because of the alcohol in it....there is a perscribed
"swish" mouth wash that is used IF you get a sore..but we leave that out as he has gotten NO sores as yet....
Of course if you get a canker or mouth sore hold ICE on it for as long as you can stand it. (old wives take I have used for 40 years and it works to stop them from growing)

and finally PRILOSEC...over the counter releaves REFLUX at night....many folks don't even know they have reflux but use it anyway. If you have acid at night while sleeping that comes up into your mouth you will get the sores...Our use of the home made garggle and the prilosec I believe has stopped the mouth sores dead in their tracks.....

Good luck on your journey...Hope you see your ca 19 numbers go down in less than 1 month to incourage you to continue the treatment.
marlene

My wife is on her 5th week of Rasonque, still on early access program, but probably transitioning soon. Her ca 19 number also (thankfully) dropped significantly. It is strange how side effects differ from one person to the next. She has had no mouth sores up to now and very little rash. However, she has had significant diarrhea which has been a challenge to control. The husband of a person I know has had terrible mouth sores. Her NP is reluctant to reduce her Rasonque dose to improve digestion issues. I wonder if there is an explanation for why there are such different reactions to the pills.

@witchypooy
Thank you.

@ljojimo I don't think it is a different reaction to the pills, its a different reaction to the condition of your body...for your friend with the mouth sores...they should take a PRILOSEC over the counter every night, even if they say they don't have reflux...most folks that have reflux don't even know they have it, Its not just vomit coming up which is noticable, It deposits acid stomach gases almost while sleeping..so your mouth is already in a bad position . Sitting there all nigh, without you knowing, if the rasonque causes mouth sores, your mouth will already be in bad shape to fight them. Take the Prilosec. My hubby was always prone to cold sores and canker sores all his life...So Prilosec, and my hubby also garggles with home made mouth wash twice a day morning and before bed, made of 1/4 teas salt, 1/4 teas baking soda, 1/2 cup warm water. this is OK with his doctor . can't hurt anything..no cost and no alcohol in it like o-t-c garggles. it cleans the gums and prepares his mouth for sleep. Finally if you get that tingling feeling a sore is beginning or already have one...hold ICE, yes an ice cube on it for as long as you can stand it...repeat as often as you can and the sore willl dry up in 3 days, and will not spread.
For diarrhia...my hubby had bad bouts the 1st and 2nd day then we got a simple o-t-c anti diarrhia med he took before the rasonque and low and behold he has had NO diarrhia for 27 days now. the product is called OHM loperamide hydrochloride 2mg...anti-diarrheal ...but any product for this purpose should do. and drink your water as directed and cut down on fatty foods...
Hope this helps....
marlene

@ljojimo In reply to @ljojimo "My wife is on her 5th week of Rasonque, still on early access program, but probably..." + (show)
@ljojimo I don't think it is a different reaction to the pills, its a different reaction to the condition of your body...for your friend with the mouth sores...they should take a PRILOSEC over the counter every night, even if they say they don't have reflux...most folks that have reflux don't even know they have it, Its not just vomit coming up which is noticable, It deposits acid stomach gases almost while sleeping..so your mouth is already in a bad position . Sitting there all nigh, without you knowing, if the rasonque causes mouth sores, your mouth will already be in bad shape to fight them. Take the Prilosec. My hubby was always prone to cold sores and canker sores all his life...So Prilosec, and my hubby also garggles with home made mouth wash twice a day morning and before bed, made of 1/4 teas salt, 1/4 teas baking soda, 1/2 cup warm water. this is OK with his doctor . can't hurt anything..no cost and no alcohol in it like o-t-c garggles. it cleans the gums and prepares his mouth for sleep. Finally if you get that tingling feeling a sore is beginning or already have one...hold ICE, yes an ice cube on it for as long as you can stand it...repeat as often as you can and the sore willl dry up in 3 days, and will not spread.
For diarrhia...my hubby had bad bouts the 1st and 2nd day then we got a simple o-t-c anti diarrhia med he took before the rasonque and low and behold he has had NO diarrhia for 27 days now. the product is called OHM loperamide hydrochloride 2mg...anti-diarrheal ...but any product for this purpose should do. and drink your water as directed and cut down on fatty foods...
Hope this helps....
marlene

@ljojimo prescription Lomotil helped my mom’s diarrhea. I think the different reactions to the pill are just like different reactions to chemo. Plus they give the same dose amount no matter if you weigh 100 pounds vs 200 pounds so there seem to be many variables. I hope things subside for your wife.