Finally ready to talk about my CC
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Kathy,
I will keep you in my prayers. I also have lung mets that showed up 3 months after my resection. Stay strong and go for the trial, Praying for minimal side effects, as a mother of 6 , I know how hard it is to fight sickness and still be a mommy. Sending hugs your way!
MelindaKathy…use this time to rest and gain strength, both physically and mentally. The better your health, the better for you to stay in the trials once you get into one…..and you WILL!!! I am going to will that to happen for you and with super results….for those precious babies of yours, so their mommy is with them a lot longer.
Prayers for you.
Julie T.
Kathy-
So very sorry not the results we all hoped for. I hope the trial can offer great results with minimal side effects.
Take care,
CatherineKathy… Count me in, I too hate this disease. As you mentioned, other than these pesky lung nodules, everything looks fantastic. Although still under investigation for our cancer, we hear of great responses with the available inhibitors. Crossing my fingers that you too will do well.
Hugs,
MarionNot sure if this is the right place to post an update, but I’ll start here. I had my repeat scan and CA19-9 done last week, and I got the results today. They are not good sadly. When I was diagnosed in January, I had several small lung nodules (2 mm) – too small to biopsy. However, they stayed stable over my scans in March (pre-op) and May (post-op), so we were hoping that they were not mets. However, last week’s scan shows several have grown, and there are several new ones. The largest is now 9 mm. There are multiple nodules in both lungs, so surgery is not an option. Radiation is not an option because it would damage the surrounding healthy lung tissue.
SO, if there can be any good news, there’s no recurrence in my remaining liver or anywhere in the abdomen, and my CA 19-9 remains low at 40 (pre-op was >1000). My tumor had an FGFR2 mutation, so my oncologist is trying to get me into a stage II trial of ponatinib, an FGFR inhibitor. Apparently, they are a site for the trial. I should know if I can get into the trial in the next few days. If not, then they are going to treat me with another FGFR2 inhibitor off trial – pazopanib. I’m going to go over to the other boards and see what folks are saying about the side effects. I’m desperate to buy time for my kids, but I also don’t want to feel so awful that we can’t enjoy our time.
I hate this disease. Given the size of my tumor at presentation and everything I’ve read, I knew this was coming, but I really wanted a different answer. I desperately wanted more time for my kids. All I can do at this point is try to make the most of the time I have and make sure that everything is in order for them for after.
Thanks for listening,
Kathy
Dear Kathy, congratulations on a well deserved break. Don’t worry about the chemo, like the ever ready rabbit it keep on tick’in. Looking forward to a good scan report. Be kind to yourself now and have some fun!
Kathy…. I am happy for you. People (often times) are worried about taking a break from chemo, but as far as I know the chemo agents continue to work for sometime following the infusion. Any noticeable side effects you are dealing with?
Hugs to you,
MarionJust finished cycle four of chemo. I’m now on a break. My oncologist wants me to have a break for a few weeks since we’ve been at it hard since January – chemo, surgery, post-op complications, and more chemo. I will get scanned and tumor markers drawn on September 29, and then I’ll see my oncologist for results on October 5. I’ll just try not to go crazy in the meantime. I’m glad to have made it this far and to be feeling so much better. I’m just scared of the elephant in the room.
Hi Kathy, thank you for the update and anxious to get your scan results as I know you are. In a way it is great to have the 3 munchkins as I am sure they keep you busy when you get home from work. Thank you so much for the update and look forward to some great news after the Scan. Amazing how strong we can be, yes? No advice on what to think at night, honestly I would be thinking the same as you. I think your attitude is amazing and it will get you far. Looking forward to your next results!
Just an update since people asked. I’m in cycle three of oxaliplatin and xeloda. One more cycle before my repeat scan. I’ve had a fair bit of cold sensitivity and neuropathy but much less nausea than with the gem/cis. I’m working full days and physical therapy continues to go well. Work is good for me because it lets me “forget” about things for awhile. I struggle the most emotionally when I’m with my kids. I love that I can do so much more with them again – almost back to normal really. But I tend to get really emotional once they’ve gone to bed at night because I get stuck thinking about all things I’ll miss if this tumor wins. My kids are little (6 years old and 4 year old twins). So, that’s where I’m at these days. Better go do my PT for the night!
Kathy,
What a story you have to tell! I am so happy you were able to have a resection and get rid of that 20lb tumor!! Sending good thoughts and prayers for your chemo tolerance to be a walk in the park. Hang in there and keep us updated on your progress.
Melinda
Hi Kathy,
Sorry to read your story, it sounds like you have been through so much!
How are you now?
I hope you are finding the chemo working better for you.best wishes,
Moose
Great news, Kathy. Cisplatin is harsher than Oxaliplatin, hence your side effects may very well be less than what you had been experiencing in the past. Keeping my fingers crossed for everything good coming your way.
Hugs,
MarionHi Kathy,
Thanks for the update and it sounds like things are improving for you, excellent news! It could well be as you say that this chemo went better for you due to you being in better shape for it this time or it could be that you can tolerate this chemo better than the Gem/Cis. Others who have had experiences of both will hopefully chip in and share their experiences with each with you. But real glad to hear that you are doing better now hoping that your scans and test in Sept come back good as well.
My best wishes to you,
Gavin
Just finished my first cycle of post-op chemo with oxaliplatin and Xeloda. It went much better than my Gem/Cis chemo when I was first diagnosed, but I suspect that’s because I’m in much better shape physically this time now that the tumor is out. Otherwise, physical therapy is going well, and I’m back to work. My oncologist wants to do three more cycles before re-scanning and repeating a CA 19-9 (mid-September). My last scans in May were clear and my CA 19-9 was normal then. Here’s hoping they stay that way!
Kathy
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