Hi gamaryanne- how is your clinical trial going? What is the name of it? I’m considering it. Ive been on a chemo vacation for 2 weeks and my ca19-9 went from 19 to 91, so not happy about the results. The CT I had just days before the vacay showed nothing new and in fact shrinkage of the existing liver lesions. I hope it’s going well for you.
Hello @mnewland99
I have about 3 weeks left in the first cycle. I am doing the “doublet” RMC 9805 and RMC 6236. After chemo wash out my marker rose to 233. I’ll find out late today where it stands now after a month of these drugs. Side effects are an annoying rash and diarrhea/constipation. The latter being part of our life anyway-right?
Results of this trial for those with KRAS G12D seem very positive. Tumor shrinkage and less or no progression. Probably not a cure, but a break from toxic chemo.
My markers went from normal to a slow ride as yours. I knew I was becoming resistant even though scans weren’t showing it; so I began looking in February. My April scan showed 1 possibly two tumors as suspected. These allowed me into the trial.
You are smart to be thinking ahead. We all must be doing that. Fortunately, there are back up plans
Hello @mnewland99
I have about 3 weeks left in the first cycle. I am doing the “doublet” RMC 9805 and RMC 6236. After chemo wash out my marker rose to 233. I’ll find out late today where it stands now after a month of these drugs. Side effects are an annoying rash and diarrhea/constipation. The latter being part of our life anyway-right?
Results of this trial for those with KRAS G12D seem very positive. Tumor shrinkage and less or no progression. Probably not a cure, but a break from toxic chemo.
My markers went from normal to a slow ride as yours. I knew I was becoming resistant even though scans weren’t showing it; so I began looking in February. My April scan showed 1 possibly two tumors as suspected. These allowed me into the trial.
You are smart to be thinking ahead. We all must be doing that. Fortunately, there are back up plans
Hello
I was just qualified for the chemo pill Sotorasib because of my gene marker KRAS. I should be able to start today! I’m excited to see if I have metastasis to my lung clears up. Happy to end the gem/abrax. My blood work could never recover after chemo. I’m hoping the side effects are lessened.
Anybody been on it for a while?
Hello @mnewland99
I have about 3 weeks left in the first cycle. I am doing the “doublet” RMC 9805 and RMC 6236. After chemo wash out my marker rose to 233. I’ll find out late today where it stands now after a month of these drugs. Side effects are an annoying rash and diarrhea/constipation. The latter being part of our life anyway-right?
Results of this trial for those with KRAS G12D seem very positive. Tumor shrinkage and less or no progression. Probably not a cure, but a break from toxic chemo.
My markers went from normal to a slow ride as yours. I knew I was becoming resistant even though scans weren’t showing it; so I began looking in February. My April scan showed 1 possibly two tumors as suspected. These allowed me into the trial.
You are smart to be thinking ahead. We all must be doing that. Fortunately, there are back up plans
Che bello! Sono curiosa di sapere come va dopo la cura. Tienici aggiornati. Ma la sperimentazione in quale ospedale la stai facendo.
Io dall'italiano sto cercando di sapere circa la possibilità di partecipare per mio fratello.
Ma la vedo molto complicata.... Spero che a settembre sia possibile farla anche in Europa.
Un caro saluto e in bocca al lupo!!
Maria
My husband had the Whipple done in December 2023 with a follow up of chemo for 8 mos. He's stage 3. His CT/PET scans have been good; even a NED. Last PET scan in July showed a reoccurrence of a slow growing nodule 1 cm and some lymph nodes too. It is inoperable because of the location. He feels GREAT. Has been gaining his weight back and has a lot of energy, He looks great too! My problem is they (VA) are waiting to start chemo again until he is sick??? That seems weird to me???? I have to say, they sent blood somewhere to get a better idea of the type of chemo to use. We got a second opinion and this doc also agreed. We are eat up with anxiety hoping the cancer doesn't invade other organs while we wait. (Terrible way to live) I'm sure we aren't alone on this?
Background:
To clarify: my wife is the patient, I am the researcher.
Our research discovered a clinical trial entitled "Stereotactic MR-guided on-table adaptive radiation therapy (SMART) for borderline resectable and locally advanced pancreatic cancer: A multi-center, open-label phase 2 study". Here is the link: https://www.thegreenjournal.com/article/S0167-8140(23)09371-4/fulltext
I am not a doctor, so the following is my layperson's understanding. SMART radiation uses real-time MRI imaging to adjust the beam as the patient's body moves for any number of reasons, such as during breathing. or muscle contraction. This is an improvement on traditional radiation which essentially takes a CT on Day 1 and uses that image for treatment on Day 2. Since this does not account for patient or tumor movement, the beam accuracy is reduced and more of the tumor is missed and other tissues are radiated. SMART provides more accuracy and therefore allows higher dosage. SMART takes two weeks. Week 1 Day 1 is consult to plan the treatment. There are 5 days of radiation in Week 2 followed by recovery.
Here is a link to Dr. Michael Chuong at Miami Baptist Health, who was the study leader: https://baptisthealth.net/doctors/michael-d-chuong/869551
We traded emails and spoke with him at length by phone. He was easy to speak with and answered all our questions. He said his treatment was specifically applicable to unresectable tumors because resectable patients would have Whipple surgery. We did not proceed with him as we thought Whipple surgery would be successful.
steveron, I am eagerly awaiting updates from you after your visit with Dr. Lee. My case is similar and after reading your post and the patient's story from baptisthealth, I contacted Dr. Chuong. He was quick to respond and I am now waiting for new scan I have scheduled next week before following up with him.
I do hope your wife is getting some hopeful news; I belong to a couple of local PC support groups here that have been very helpful in giving me hope that this hideous disease is become much more manageable if not curable!
-Becky in Phoenix
steveron, I am eagerly awaiting updates from you after your visit with Dr. Lee. My case is similar and after reading your post and the patient's story from baptisthealth, I contacted Dr. Chuong. He was quick to respond and I am now waiting for new scan I have scheduled next week before following up with him.
I do hope your wife is getting some hopeful news; I belong to a couple of local PC support groups here that have been very helpful in giving me hope that this hideous disease is become much more manageable if not curable!
-Becky in Phoenix
Beckyshops, we were impressed by Dr. Lee when we met him this week and my wife is proceeding with the initial scanning session later this month. I believe you are in good hands with Dr. Chuong. Best wishes for a favorable outcome.
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Hello @mnewland99
I have about 3 weeks left in the first cycle. I am doing the “doublet” RMC 9805 and RMC 6236. After chemo wash out my marker rose to 233. I’ll find out late today where it stands now after a month of these drugs. Side effects are an annoying rash and diarrhea/constipation. The latter being part of our life anyway-right?
Results of this trial for those with KRAS G12D seem very positive. Tumor shrinkage and less or no progression. Probably not a cure, but a break from toxic chemo.
My markers went from normal to a slow ride as yours. I knew I was becoming resistant even though scans weren’t showing it; so I began looking in February. My April scan showed 1 possibly two tumors as suspected. These allowed me into the trial.
You are smart to be thinking ahead. We all must be doing that. Fortunately, there are back up plans
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1 ReactionHello
I was just qualified for the chemo pill Sotorasib because of my gene marker KRAS. I should be able to start today! I’m excited to see if I have metastasis to my lung clears up. Happy to end the gem/abrax. My blood work could never recover after chemo. I’m hoping the side effects are lessened.
Anybody been on it for a while?
Che bello! Sono curiosa di sapere come va dopo la cura. Tienici aggiornati. Ma la sperimentazione in quale ospedale la stai facendo.
Io dall'italiano sto cercando di sapere circa la possibilità di partecipare per mio fratello.
Ma la vedo molto complicata.... Spero che a settembre sia possibile farla anche in Europa.
Un caro saluto e in bocca al lupo!!
Maria
My husband had the Whipple done in December 2023 with a follow up of chemo for 8 mos. He's stage 3. His CT/PET scans have been good; even a NED. Last PET scan in July showed a reoccurrence of a slow growing nodule 1 cm and some lymph nodes too. It is inoperable because of the location. He feels GREAT. Has been gaining his weight back and has a lot of energy, He looks great too! My problem is they (VA) are waiting to start chemo again until he is sick??? That seems weird to me???? I have to say, they sent blood somewhere to get a better idea of the type of chemo to use. We got a second opinion and this doc also agreed. We are eat up with anxiety hoping the cancer doesn't invade other organs while we wait. (Terrible way to live) I'm sure we aren't alone on this?
steveron, I am eagerly awaiting updates from you after your visit with Dr. Lee. My case is similar and after reading your post and the patient's story from baptisthealth, I contacted Dr. Chuong. He was quick to respond and I am now waiting for new scan I have scheduled next week before following up with him.
I do hope your wife is getting some hopeful news; I belong to a couple of local PC support groups here that have been very helpful in giving me hope that this hideous disease is become much more manageable if not curable!
-Becky in Phoenix
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Like -
Helpful -
Hug
2 ReactionsBeckyshops, we were impressed by Dr. Lee when we met him this week and my wife is proceeding with the initial scanning session later this month. I believe you are in good hands with Dr. Chuong. Best wishes for a favorable outcome.
-
Like -
Helpful -
Hug
3 Reactions