new to the disease and to this link
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Good luck to you Susan, I think we will buy tickets to a show for a Wednesday night since I usually get my chemo on Wednesdays. I know I will be getting my next CT on Aug 19 along with an eccho, not sure if they will have me get an mri of my spine then too. I hope I feel ok a couple of days after getting the port. I’ve been walking 2 miles most mornings before the heat hits to keep me from being lazy
Have a safe trip to NYC.
-DianeDiane – 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!
SusanHey Susan, I met with a surgeon Peter Allen and he told me that maybe down the line he would put a pump on my liver to bathe it in chemo. I’ll wait and see what happens. Kudos to you coming all that way. My day is a 12 hour day when I go to city from the time I leave my house either by train or car till when I get home in the evening. Had my second treatment with Gem/CIS yesterday and I don’t go back till 7/15 but I’m going to get a port put in so I don’t have to deal with my veins going bad later on. So I’m waiting for the scheduling department to contact me.
I feel great this morning and got out and walked the dog first then dropped him off and went for a two mile walk. I need to be active to avoid being bored. I’m not used to not working. I usually work at a sleep away camp and I’m usually away for 9 weeks. I drive a bus there and go on trips about 5-6 days a week. Always surrounded by friends and 500 campers. Camp started yesterday and I miss it big time and i’m in contact with my friends and they say it’s just weird without me. This would have been my 8th summer. I’ll visit when I can.
I have friends that have dropped off dinner on my days I go to the hospital so it makes it easier for us.
Good luck with your treatment. Maybe we’ll cross paths one day. I guess you go to the third floor at 160 E 53rd? I go to the 4th floorDear Susan, or I should say, Susan Sunshine! You are fabulous! I am fortunate NOT to have CC (my husband had CC) but have been through my share of things as well and I have always said a good attitude, positive thoughts and helping others is the best RX in the world. Oh and I might add humor. I know sometimes it is hard and everyone is different but what a difference YOU make when you can make someone else smile! Bless you!
Diane, 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!
SusanHi Diane,
My husband had Mek162 as a single agent without Gem/cis as he had this regimen as adjuvant therapy after the surgery in 2010. Side effects he had was vision change and an elevated enzyme related to heart (forgot the name). Hope the combination works for you. Good luck!!
Lee
rarebreed……would you be so kind and repost your info in the clinical trials category?
http://www.cholangiocarcinoma.org/punbb/post.php?fid=14
This allows us to highlight it and perhaps others participating in this particular trial will be able to communicate with you.
You may want to add MEK162 to the topic headline.
Thanks for considering,
Hugs,
MarionDuke,
Was the pain due to the combination of MEK and chemo? I know that the liver and right shoulder are somehow connected.Thanks for the optimism boost. It’s always been my personality to see the sunny side. I have no reason to change it. I’m hoping it keeps me healthy. Unfortunately this has kept me from doing my favorite thing which is working at a sleep away camp in upstate NY for 9 weeks. I guess I will need to find new things to keep me busy.
Wishing everyone here positive and healthy vibes.
-DianeHey Lee,
Did your husband also have gemcitabean and cisplatin? I take the Mek162 2x a day 3 tablets…stop 2 days before the chemo and start up again the next day. This is only my 1st round so I guess after my next CT in Aug to see if there is any success.Diane –
Attitude is so important – that can’t be over-emphasized. Yours is a winner.Two things to stick in the back of your mind. I and several others, experienced discomfort on the right side of the body, either front or back, just at the bottom of the rib cage. We also felt this in our right shoulders. Kind of like you over-extended while playing tennis or golf, or yard work. Let you onc know if you experience either of these.
Hang in there. Let your husband and kids know how important they are to you and getting better. You might think “They already know that”. True, but say it often anyway. Followed by a great big hug and kiss.
Duke
Hi Diane,
My husband was treated with Mek162 as a single agent. It worked for a short time, but he has been treated with other agents targeting the EGFR-MAPK-ERK pathway so he may have developed resistance to Mek162. Overall Mek162 has demonstrated promising efficacy in cholangiocarcinoma as a single agent. Combining with cytotoxic agents may have even more anti-tumor effects. Best of luck!!
Lee
Hi Diane,
Welcome to the site. Sorry that you had to find us all and sorry to hear everything that you are going through. But glad that you’ve joined in with us here as you are so in the best place for support and help and I know that you will get loads of each from all of us.
I so hope that the trial and the chemo goes well for you and please keep us updated on how this goes. My fingers are crossed for you and we are all here for you. Looking forward to hearing more from you.
My best wishes to you,
Gavin
Diane,
Welcome to the boards, we are so glad you are here. Thank you for posting you information and thank you for your participation in a clinical trial. Looking forward to seeing your progress! Praying for success, and little side effects for you! Positive thoughts, hugs and prayers headed your way!
MelindaHi Diane-
I wish you luck with the trial. I’m in my 40s with little kids. I had clean margins at surgery but three positive lymph nodes (rest were negative), so I’m currently doing chemo with oxaliplatin and xeloda. I hope your new drug has minimal side effects and knocks your tumor out! We do all we can do and hope for the best!
Kathy
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