kris00j
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Shari, I am sorry you keep having to hop back on this roller coaster.
Did they save any tissue for pathology? I’m sure they did. If so, I suggest you get the genomic sequencing done thru Foundation One or another such lab. Then look for trials from there, based on the mutations. You will have to have a biopsy of the node if you are a candidate.
Good luck. I’m hoping the next round of gem Ox kicks it down for you!Melinda, wonderful news!! I am doing virtual cartwheels for you!!
I discussed the trial with my onc a few weeks ago. She knows about it, and even though it isn’t at Fox Chase, I don’t think she would neglect to mention it to her patients if they don’t get into fix chases trials.
Such an exciting, hopeful time! And you are paving the way!Jen,
What a wonderful tribute to read. Thank you for sharing such a personal time with us. And thank you for the descriptions of the glimpses from beyond.Rob, what a great way to join this site. Although none of us wants to be a member, you are one of the lucky ones.
To chemo or not is a very personal decision. I’m not sure which I would pick, given the option. Of course, this is with my personal experience with chemo.
I will make one suggestion if you choose not to chemo. Please start a very healthy diet, if you didn’t already have one. Limit processed foods of all types, especially sugar and fake sugars. Remove fake sugars completely if possible. Fried foods are a nono, and meat should be limited, too. This was recommended to me by my surgeon after I was deemed inoperable.
I tried juicing, but hated it. I do, however, make smoothies. Spinach is almost as healthy as kale, and tastes so much better! Although it makes for an ugly green smoothie.
Good luck and please keep us updated on your success!Gramps,
So sorry you have had to find us. But this is the best place to find answers, as we are all connected as either patients or caregivers from around the world. There is an abundance of knowledge, experiences, and support here. Please consider a second opinion, as there are a limited number of experienced centers around the states. And please don’t hesitate to ask anything here! I’m sure you will get feedback from everyone who can help you.
Good luck. I hope the chemo treatment your Hero is receiving gives some relief quickly.I’m 14 months into this trial… The hair thinned but seems to be holding steady. The fatigue is getting worse, but I can handle that. The edema is getting worse, too. But Lasix 2x a day is keeping it mostly at bay.
I discussed my concerns with Dr. Denlinger. I am flying to Alabama at the end of July to see Mom & Dad, and all my brothers and families. We are busy coordinating this now. My concern is the flying with the edema.
Dr. Ds response was a surprise. Since I am past 14 cycles, I have more than met the criteria for the trial. I am now “maintenance”. Still being followed, but the requirements were met. So, provided the CT scan in July looks good, Dr. D is going to suggest to Lilly that I get a 2-3 week break. Hopefully it will give my body a little time to bounce back a little bit from the cumulative effects. Hopefully they allow it!Patty,
Such great, wonderful, unbelievably exciting news!! I am so happy for you!! And exciting news for the rest of us from MD Anderson!I’m glad to hear things are looking up. I had the genetic testing done, also, and it was no cost to me because of Medicare and supplemental plan. It seems it will be very helpful in future… The mutations found are also in breast cancer patients. So I have a good chance of funded therapy in future.
My onc and I have also decided that since the trial drug I am on is working, we will wait for a while before changing to the new trial drug.
Good luck to you and your wife. I hope the new treatment plan is very successful.Makhachkala,
I never chimed in before, but here goes… Call Fox Chase in Philadelphia. No further than NYC for you.
My onc is Crystal Denlinger. She is WONDERFUL! And they have at least 2 trials going on right now for cc. Plus they care, and are a cancer hospital. I did the trek to Sloan Kettering for 2 years, and am so happy to now be at fox Chase. Phone # 888-FOXCHASE.
If you want to be connected to MDAnderson, try cooper medical center. They just joined with MD Anderson.Virginia, WHOOPIE!! We LOVE stories like this! It gives us hope.
Congratulations on your ever-lengthening time between scans!
You are so lucky to have had this caught in time for a great prognosis. So often we live with this monster just thinking… It was something I ate… My back really hurts, must have pulled something. Etc.
Kudos to your doc for being so proactive!Snewland, I am sorry to hear of your husbands passing.
I am not sure where you could find such info. I know Gavin posts many things about possible links in the new development section.
As KrisV said, there are some possible links from other diagnoses. River flukes, gall stones, among other things are possible links. As are chemicals in the printing industry, so I could see other chemicals possibly being a link. And colon cancer and cc are very close “cousins”, according to my surgeon. There are those that say GI problems, hepatitis, and liver function problems can make one more predisposed to cc. I also know the trial I am on targets head and neck cancers, colon cancer, and cc.
I wish I could help you more.I have some somewhere, but not sure where they ended up. So I have to look for them. I know I had a bunch for relay for life last year. My relay is next Saturday, so I need to find them again.
I found it through Google as well. But, to be honest, I was given my diagnosis over the phone by a horrible man associated with Drexel University Hospital. I looked it up immediately so I knew what questions to ask… Found cc.org AFTER I found that horrible page that said 93% of those diagnosed were dead within 2 years. That was over 3 years ago. So I don’t believe that page anymore!!
When at MSKCC in NY I left pamphlets almost every time I went. Talked to Dr. Ks staff about cc.org, along with any cc patients I met. I still tell everyone at Fox Chase about cc.org, but I do have to admit I don’t leave pamphlets. I will on Tuesday, if I remember to find them!
I will also ask Dr. D and the nurses in CRU if they ever mention this site to their cc patients.Suzy,
I am sorry to hear about the docs prognosis. I hope Johns Hopkins has an alternative. And listen to KrisV and Lainy. hospice is not only for the sick, but to help the caregivers.Larissa, I’m sorry things have progressed so far. I’m glad you can make the trip to see your aunt.
The decision to keep fighting, do chemo, surgery, or call hospice and get some relief is a very personal one. One that is usually not decided on lightly. Only your aunt knows how she feels, really. My thoughts? Be there for her as much as you can. Make memories. Listen to her.and support her with any decisions she makes. It will be tough. But worth it
