kris00j
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Mary, sending lots of strength to you!
And Mary and Percy, I’m sending as many prayers as I can for each of you.Oh, Crissie, I’m sorry. I will say that oxaliplatin kicked butt with both cc mutations that were in my body, so here’s hoping your dad gets the same response. And, depending on how “healthy” he is… maybe he can enter a trial. It’s a thought.
Mary, I’m so sorry! I emailed you last week. Wasn’t sure how you’re feeling. I know you said the iriticain(sp??) is kicking your butt. Let’s hope it’s working.
All that goes along with it is still a heck of a lot better than traditional chemo! I’ll take my “normal” head of hair and large left leg over sever nausea any day!
I am starting cycle 12. They have added some side effects to the list. Edema and fatigue are most common, along with something else which I can’t remember… And nausea, diarrhea, constipation are less common. No mention of the acne like skin or hair loss.
My nurse today was distracted by having to fill the pump. So distracted that I didn’t notice she forgot my labs!! lol
And I have the beginnings of a UTI so I’m on Cipro. So in 2 months my meds have doubled! We talked about the edema and the fact that I can’t seem to take a day off: the swelling comes right back, not that it goes away completely. But kidneys look good so I will keep taking it.
Scan yesterday shows nothing new. And stability. So I’m happy there. CA19-9 is up a bit to 39. Guess I gotta lay off the meat for a bit.
All in all, a good day!Jason, I was given steroids during chemo using the pump and FUDR. It was to keep the liver “calm”. Kris, you should ask about that. Maybe it would help.
I’m sorry Mark is having such a tough time. I HOPE and pray it gets better.Lola,
I agree with talking to Lisa. She stays fairly “local”, and I know she loves her surgeon. As far as other centers, there are many. Traveling to them can be a chore. If you have the resources, I would suggest MD Anderson, Sloane Kettering (just not Nancy Kemeny) or one of the other “top 5”. Minnesota might not be a bad idea for you. I realize it’s pretty far, but fairly close compared to others.
As far as trials go, even the one I am on has rules. For Phase 2 the patient must have had one line of treatment that failed. I don’t know when Phase 3 will start or what the rules are.
Having a care team that understands cc is very important. Having an oncologist you can talk to is also very important.
I wish you well in your search.Porter,
I agree that they might be trying something else because your body already knows cisplatin.
It’s my understanding that oxaliplatin is not as hard on the kidneys, and hair loss is less likely. (Not that THAT is important!)
While I was on it, I kept gloves everywhere. I put them on to take my egg out of the fridge. Then I let the egg sit to warm up a little. Cracking eggs with gloves on gets messy! Believe me, I tried it! I drank room temp water. I used a filter, but bottled water is easy, too. I drank ensure, also, because I was losing weight. That was also room temp.
Just don’t forget the gloves when going to the fridge or freezer. It really stings. Kind of like being burned by a match.
At least it’s getting warmer so you shouldn’t have to deal with a scarf, but you might want one handy in case. The cold sensitivity in my mouth usually only lasted 3-4 days.
My other side effect was nausea. I took the pills and fought it for a couple of days. Then I finally gave up. I would get sick about 6 hours after completion, then be better! But I no longer like chicken noodle soup!
And then there’s the neuropathy. It went away by the next treatment for 5 or 6 treatments. Then my toes still tingled and so did 2 fingers. So they had to stop chemo. In retrospect, I think I would gave lied to get one more dose. But I didn’t. It’s been since Nov. 2011 and I have most of the feeling back, except for my toes. And when my feet get cold, it feels more like neuropathy. Normally, it’s just a light tingling that I ignore.
Between doc visits and infusions, my days were usually from 9ish arrival to 4ish departure. So, yes, be prepared. They usually give Benadryl or similar so you can nap for a while. But infusion is around 5 hours if I remember right.
Good luck!I agree. It really sucks. It’s so unfair that this poor kid got such a short stick. My thoughts are with his family. I cannot even begin to understand how they feel right now.
Michele,
I am so sorry. May he rest in peace, now cancer free.
My prayers and healing thoughts are with you and your family at this difficult time.Carl, it was my pleasure to meet you and Lynn! And I took the subject off cc to make you two laugh and relieve some of the stress… I know how hard those long days can get. Even a brief hour of smiles and laughter removes us from the stress of thinking “chemo”, “cc”, etc… And laughter is the best medicine! If some of your days are Tuesdays they might coordinate. Otherwise, we might just have to have me crash the party again.
We have to add Lynn to the trial. Her husband, Carl, visits this board. She began the trial last week, I think. I visited them today. She is on Phase 2 which means she gets cisplatin also. Today was chemo day so I spent an hour or so with them and tried to keep her mind off the cisplatin! I was there at the beginning, tho, and after they administered the pre chemo meds, I knew she’d get tired. So I left her to sleep. What a nice couple of people. I’m glad I went!
Hi,
Firstly, congratulations on his successful surgery!
I was on Xeloda for a few rounds. Xeloda is a less harsh chemo than some of the others.
As for side effects… They should have told you to go buy GOOD lotion. I bought Eucerine. The lotion should contain Urea. Yes, you read that right. Make sure the lotion is liberally administered to hands and feet nightly before side effects can begin, as they can get painful. I bought special socks that hold the lotion so the feet get more treatment. The possible side effects are peeling, burning of hands and feet. And possible sores in the mouth. You can get a rinse for that, too. I don’t remember any eating or nausea side effects. But if you search for Xeloda you might find more info.Also, if you contact the company Genentech, they will send you a care package. And, depending on your insurance, they might be able to help defray some of the costs. For this, I believe there is a cap for income, but I don’t remember what it is. I know that I fell WAY short of the cap.
Good luck, and keep us informed. And, again, congratulations! You are at a great hospital, too. Who his his onc?
