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Pam,
I’m very sorry to hear this. I figured when you didn’t post right away, that it wasn’t good news. They probably can’t say for 100% sure it’s a tumor without a biopsy. I think that’s what your Dr meant by that.
I have never had Oxaliplatin but I know it can cause neuropathy. I took Xeloda during radiation and I did not have side effects. I was really nauseated at that time, but I believe that was from radiation. As I’m sure you’ve read on here, Xeloda can cause hand/foot syndrome so make sure she puts lots of lotion on. My Xeloda kit came with lotion.
Make sure the nurse review side effects with you. They should do this any time a new chemo is started.Hang in there. I know this is not the news you hoped for. Praying this new chemo works wonders.
Keep us posted.
Susie
Hi Trevor. I’m 32 and was diagnosed 14 months ago. I had a resection, chemo and radiation. It is a very difficult process. I went to a Cancer Survivors Young Adult support group, but honestly I can’t say it helped me very much. I try to keep as busy as I can and count my blessings instead of dwelling on all the negative. I’m not saying it’s easy or that I’m even capable of doing this, but I try.
Let us know if they change your chemo. I had Gemzar/Cisplatin. I tolerated it pretty well except it destroyed my counts and I needed neupogen and eventually a blood transfusion.
Lots of prayers!Susie
Kristin,
Hi. I’m 32 and was diagnosed at 31 with cholangiocarcinoma. I live about 1-2 miles away from a small airport.
What are you suggesting we get tested for and where do you get it done at?
There doesn’t appear to be a high incidence of cholangiocarcinoma in my area.Susie
My oncologist responded that it is fine to take these things. That’s all she said, no detail. She also agreed to check my vit D the next time I get labs.
So, do I want to take them or not? I’m leaning on taking them because here are my thoughts. There has to be some type of underlying issue in my body that allowed this cancer to grow that hasn’t been dealt with. I had the tumor removed, had chemo and radiation, all which focused on killing the tumor, not with fixing whatever problem caused it to grow. So, if the problem isn’t fixed, why wouldn’t it grow back? That is the most frustrating part of this whole process for me. No one has any idea how I got this horrible thing, and no one really cares to look into it. I’m not blaming them, obviously my drs have enough to deal with and their main focus has been treating the cancer, not worrying about where it came from. But I worry about how I got it all the time.
I don’t mean to toot my own horn here, but I was pretty much the epitome of health before I got cancer. So, there aren’t many diet/lifestyle changes that I can implement that I think would make a difference.If the cancer comes back will I blame the supplements? If I don’t take them and it comes back, I’ll have wish I’d taken the stupid things. Both chemo and radiation were presented to me with little proof that they would help my situation, so I guess this is not any different than that scenario.
Eli, I can’t remember the mushrooms he named. I know maitake and shiitake were in the mix. He said they were all edible.
Have a good night everyone.
Susie
Tiffany,
I would talk to your dr’s about this one if that’s the route they decide to go. I’m not sure it’s standard to have a transplant if you have positive lymph nodes. Immunosuppresive drugs and cancer are a tricky combination. Let us know what they say.
Take care,
SusieTiffany,
I have talked to my oncologist several times about supplements/alternative treatments. She does not recommend any but is not opposed to me looking into it. The only thing she was against, is taking supplements the day of chemotherapy and taking high does antioxidants while on chemotherapy. I also went to Mayo and they basically agreed with this.
I should mention I live in Portland, Oregon. It is extremely popular to be involved in natural therapy here, so I’m sure that has something to do with my oncologist’s open mindedness and laid back attitude towards natural medicine. She did recommend a naturopath that I saw today. I will post the results separately. One thing she said, was if natural medicine is something I want to consider, she thinks this is the best time to do it, when I am not receiving treatment and am trying to recover from treatment.
My advice is, I would not take ANYTHING without running it past your oncologist.
Also, I would not go start taking lots of different supplements unsupervised based on things you read on the internet and recommendations of friends/family. I don’t know about you, but since my diagnosis, I have gotten bombarded by people telling me to take this/avoid that etc. I think if you are going to go the natural route, I would really recommend seeing a naturopath and getting some professional advice. My consult was $200 and was about 90minutes.
The other thing to consider is I’m off all treatment and recovering from chemo and radiation. I personally wasn’t willing to risk taking anything not prescribed by my oncologist during active treatment because I had just had part of my liver removed, was getting active treatment and you just don’t know how supplements interact with treatment.
One other thing to mention, if you remember, I used to be a nurse in the liver transplant ICU. It’s not common, and I have no idea what other factors were involved, but I have seen people have significant liver damage which was blamed on herbal remedies. Like I said, I have no idea if that was the true cause, but it was enough to make me think twice about what I put in my body.
Be well and let us know what you decide!Susie
I received neupogen for a low wbc during chemo, but it was not a clinical trial. Most of the clinical trials I read say you must have a high enough white count to participate, so that’s probably the difference.
Take care,
SusieOh no, Pam. I will pray it is not a new tumor. And now you have to wait for another test and wait for the results. It’s just so unfair. I’m sure you are all a mess. Please keep us posted. I know you will. Tell Lauren to hang in there and let her know lots of extra prayers will be said for her.
Take care,
Susie
Oh, Kris, I could just scream. I don’t understand why patients, who are going through enough already, need to be their own coordinators.
I hope you get in soon.
Take care,
Susie
I know obviously chemo can drop your counts, but is she bleeding from anywhere? I would make sure her coags are ok, pt/ptt inr and plts.
Also, you may want to get her iron levels/ferritin drawn. Sometimes chemo can also cause an iron deficiency anemia and she may need to get iron.
Red cell transfusions don’t last forever, so I guess it’s possible she gets a bump from the transfusion and then goes right back down with more chemo.I would not worry about getting the blood with the chemo on the same day. the only thing I would be concerned about is the amount of fluid it is. Sometimes they give lasix if they think they are giving too much fluid.
Take care,
Susie
