susanbraden
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HI! I started the IDH1 mutation AG-120 trial phase 3 randomized (2:1), double-blind placebo trial on June 14th, at Memorial Sloan Kettering in NYC. Dr. Nancy Kemeny is my Onc. The hardest thing about this trial in this phase is “not knowing” if you’re on the ag120 or placebo. If subsequent scans show growth instead of “stable”, then the trial will be unmasked at that point, and if the patient is on placebo, they will be started on the AG120 from that date. Each ‘cycle’ is 28 days. I am currently on Cycle 5 day 17. Scans are scheduled every 6 weeks, and all scans to this point have shown ‘stable’ or even some minimal shrinkage of some tumors. SO, we’re pretty sure I’m on the real drug, now. Side effects are so minimal, I don’t think I have any- especially compared to the 2 1/2 years of constant chemo I’ve had in the HAI pump and systemically. There are no steroids given with this, so I’m stiff and moving like a 90-year-old most mornings until I ‘get going”. I haven’t had to take any anti-nausea pills or other meds with this. 2 pills in the morning each day and I’m on my way. I know of a few more CC patients enrolled in this trial, now, and some waiting to start. The fact that this is targeting a specific genetic mutation and is working right now for me is very exciting – not just for me, but for the future of other ICC patients, as well.
Hi, Tennessee! I live in Richmond, VA, but lived in Memphis a while back. (I’m the Susan Sherri mentioned earlier – part of the richmond CC lunch bunch!)
I have ICC, dx March 8, 2015, and my 3rd opinion was with a surgeon (Dr. Peter Kingham) at Sloan Kettering in NY. The tumor board decided they couldn’t do a resection at that time, but enrolled me in this Phase 2 trial. Dr. Kingham implanted the HAI pump and Dr. Kemeny is my Onc. there. At first, I’d see her monthly for treatment and scans, and now I go every 2 months. My tumors started shrinking from the beginning and still are shrinking, and I’m down to only 1 chemo – gemcitabine – systemically (in the port) here in Richmond every 2 weeks. I was diagnosed at stage 4, but that really doesn’t matter. I’m doing great, and am the ‘poster child’ for great chemo with minimal side effects. I had 2 metastatic tumors in my liver – and after the surgery – where some of the tumor was harvested for biopsy and storage, the big one was 12.0 cm x 11.3 cm and another was 2.2cm x 2.0 cm. One lymph positive, one neg. some other spots they were watching in the peritoneal cavity, as well. The 2 tumors measured 5.0/3.8cm and 1.1/0.7cm at my last CT scan March 6 2016. Even though it’s still shrinking, Dr. Kemeny thinks the tumors are mostly necrotic. My liver, which took some minor damage with the chemo, is now very healthy and rebuilding. We’re thrilled chemo is still working, and we hope to be able to become ‘resectable’ at some point. My Onc and Dr.s here in Richmond think my success with this trial will help this become standard of care for solid tumors. They have started implanting HAI pumps (now that they are ‘trained’ on them here because of me) in other patients with colorectal cancer, and are investigating using this method in other cases – MSKCC has used this method for years now, with that cancer. I can’t say enough good about this trial, Memorial Sloan Kettering, and my team there AND in Richmond at Virginia Cancer Institute. And it seems it’s easier to get into MSKCC with your own referral than with your Doctor trying to get you in. Here’s a link about my trial. Keep in touch. Check out the cholangiocarcinoma warriors page on facebook. Praying for you both. I know how difficult this is, but it really helps to stay positive each day.
https://www.mskcc.org/cancer-care/clinical-trials/13-066So glad to hear this news! I have been thinking of and praying for and your family during this time, and trust there have been some wonderful family moments in the darkest times as well as in these brighter days of getting better.. Love and healing peace to you and your family!!
Christine, email me. I’d love to talk to you. I’m having ” remarkable” results with this trial. That’s a direct quote from Dr Kemeny 2 weeks ago. My surgery to implant the pump was April 8, and my largest tumor has shrunk from 12/12/8 cm to 7/5/5cm. Latest blood work received yesterday has my ca19-9 from high 200’s pretreatment down to 48 yesterday. I understand more and more everyday how chemo is different for everyone- reactions, amounts, side effects. I also am understanding more and more about how our emotions and attitudes affect our body’s cooperation with treatment. My last pump infusion 2 weeks ago was cut in half because of kidney and liver levels, but it’s still working. It can be frustrating when you think you’re not getting 100% of what’s available, but realizing that the Dr. is first and foremost prescribing for You, keeping you healthy and safe through this process? That’s good medicine. Can’t wait to connect with you. Have a great day today!
Darlene, I’ve been on oxaliplatin for treatment for 6 cycles now (every 2 weeks) tomorrow is #7. The cold sensitivity -for me- fades at day 5 following infusion. It starts about 30 min. Into treatment. Feeling/tasting metallic sensations in my mouth. Drinking cold feels very sharp in my throat – like swallowing glass. Touching something from the fridge or freezer feels like you almost stick to the item. And make sure you run water to warm before washing hands, etc. best advice I have is keep room temp juice bottles, water, etc, to drink, and have gloves at the sink, near the fridge, and wear socks around the house and to bed in air conditioning. Keep track of how long the sensitivity lasts. The sensitivity isn’t the same as full blown neuropathy. Keep a sense of humor through it. Know it’s coming and laugh and live through it. I like to visualize it’s freezing my cancer on the inside. And I’m having remarkable shrinkage in my ICC tumors in my liver. (I’m in a trial at Sloan with the HAI pump combined with systemic gem/oxy). I have a 4 year old granddaughter who thinks I turn into Elsa from Frozen during these days. And anything that makes me extra “cool” in her eyes, is worth the physical inconvenience! Email me if you want to. Good luck with the new course- and happy birthday!!
SusanDiane – It would be great to meet at Sloan some day.! I will miss you in July by only 3 days. I’ll be there for my 3 month MRI and CT scans, and a pump chemo fill July 11/12. I HIGHLY recommend the targeted HAI pump chemo, and I hope, by my participation in this trial, and by educating the cancer institute here in Richmond VA on this device that this becomes standard of care for many types of solid mass tumors. If your surgeon is open to this, I highly recommend it. Now, with the trial, I’m getting both targeted chemo with the pump AND systemic through a port. I don’t notice ANY side effects with the pump chemo – except that my tumors seem to be shrinking. We’ll know more after July 12th. A port makes everything SO much easier. You might be a little sore after the ‘installation’, but after a week or so postop, you won’t even feel it. It sure makes the blood draws and chemo easier! Hubby and I went out for dinner and to a show in NYC that night of the port installation day. Stay strong, active, and on the bright side of the street!
SusanDiane, welcome to the family of strong, surviving CC pioneers! I am also new to all this (dx March 8 ’15), and have multifocal intrahepatic cc. (Stage3b/4 and it started with a “gallbladder pain” that wasn’t. ) I LOVE MSKCC! I am in a different trial than yours. I’m in the one with the HAI pump along with gem/oxyplatin . We drive 6 hours, monthly now, to MSK, for tests, pump chemo and Dr. Visit, and do the systemic in Virginia every 2 weeks. We have found that EVERY staff and support person in the hospital and outpatient centers, including front desk, shuttle drivers, blood lab “vampires”- EVERYONE is kind, pleasant to be around, and generally upbeat, which must be difficult when everyone in the building is facing down a cancer monster of some kind. I’ve made it my goal to encourage ALL I interact with there. Not just a smile, but a pleasant word, a compliment, or even a conversation. A positive environment elevates hope, and I like helping continue what MSKCC strives to do for their patients. Uplifting you in prayers and positive thoughts today!
Susan“Here’s to the ladies who lunch…..everybody…rise!!”
What a thrill to meet Sherri today over lunch downtown in Richmond! What a comfort to know someone else with this crazy disease. I must say the shrimp and grits were delicious, but the company and discussions were the best! Staying positive so I can positively stay!
I hope others can find someone close to your location. And if any of you in CC -land are EVER near Richmond, let us know and we’ll celebrate over a meal with you!Thank you all SO much for the warm welcome! I would LOVE to get together with any or all CCfighters near me! Sheri, I will email you today, and let’s plan to get together soon. Matt friend requested me on FB, and I know he’s at Mayo, but hopefully we can meet when he returns. And the other one in RVA? I can’t wait to meet you all. This forum is great. Thanks to all the moderators and ‘caregivers’ of this site.
