kris00j
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Pam:
My doc prescribed Paxil for me and I had hallucinations the first night! I wouldn’t touch them again if someone paid me. But I did recently start Xanax and it’s saving my sanity. I only take a .25mg dose. I can take 4 a day but limit it to 2. I still get a little depression but it is helping a LOT. No more anxiety attacks and I think I’m more even keeled.
Good luck with the Zoloft. I have a friend who’s been on it for a couple of years. I don’t remember her having a problem when she started, but it’s saving her sanity, too.Lainy:
I think with all the CT scans, MRI, etc…. I’ve been my own night light for a while!!!! This will just make me “brighter”!! HAH!!!Radiation is back on. I just wish they had spent the 5 minutes explaining to me why this morning! Apparently someone looked at some of the physics calculations and was not happy with them. So they redid them today and are now happy with the calculations. Why couldn’t the guy have said that this morning?? Radiation is scheduled for 3pm tomorrow now. Just 1 day delay.
I told the doctor I would have really appreciated knowing this in the morning instead of worrying about what the problem was all day long. I told him how I had a horrible day stressing about what the problem could possibly be and IF I was going to get radiation. He apologized, but it wasn’t my doctor that called. It was an associate…. at least I got to say something to someone.
And he also said “your tumor”. I corrected him and asked that he not say that to cancer patients. It is NOT my tumor. I don’t want it. He laughed and said he understood since he is also going thru treatment….. at least he understood. Hopefully he remembers.Scratch that last post. I’m leaving it up anyway… Fox Chase just called and they want more time to evaluate my situation. They’ve had a week!!! So they cancelled my radiation! I can’t believe it. I’m so upset about ANOTHER delay in my treatment. I’ve lost count… chemos delayed, surgery delayed, etc., etc.
I want to get to the top of one of these damned ladders and stay there for a while. I’m tired of the chutes getting in the way. I can’t use the rollercoaster theme because at least there you can see the uphill in front of you.The doctor will be calling me this afternoon. I hope he has a good reason. I might start tomorrow: I might not. I LOVE these guessing games. I GUESS he will tell me today. UGH!! is not strong enough but I already swore once on here…
I start radiation at 2pm this afternoon. Stereotactic 3d imaging. Dr. Fong and Dr. Meyer (radiologist) talked last week after I got my tats, etc. I guess I find out today what they discussed. I still don’t know if I am getting radiation to both tumor and lymph node(s) or just lymph node(s). I guess it doesn’t really matter, either…. side effects will most likely be the same. Dr. Meyer said he had no concerns about the tumor. It’s the lymph nodes between all those organs that are much more dangerous… intestine, duodenum, pancreas, and the “good” bile ducts…. I sure hope they have a steady hand!!!
Needless to say, I’m quite nervous about today… I think it’s gonna be an extra Xanax day.Shoes and gloves will be their best friends. I put gloves on to get eggs out of the fridge and let them sit on the counter for about 20 minutes until I was able to pick them up without the gloves. Didn’t want raw eggs on my gloves! And I wore socks 24/7 except during showers until just about a month ago. Even now my feet are still cold sometimes.
Put the flip flops away. Sorry!It’s highly annoying, all right. I line dance twice a week, and when the feet are extra bothersome, it’s tough to do. I did have to stop for a little while. But the alternative is no treatment or treatment that didn’t work as well, so it’s worth it to me. I also had to give up riding my motorcycle because I couldn’t feel to shift the gears. Plus, I had a surgery last year to “prepare” me for the chemo, etc. They implanted a pump in my abdomen and cleaned out some of my affected lymph nodes. So I didn’t have the strength for a while. But the feet are a problem, but worth it if the oxy works as well on him as me.
KrisI was on gem/ox. Shrank my tumor from 8cmx5cm to 4cmx2.3cm or something like that (chemo brain can’t remember the exact amounts). I had 6 rounds before I couldn’t tolerate the oxy anymore. But it shrank my mets in my lymph nodes to normal size.
The main lasting side effect is neuropathy. It’s pretty common. No cold drinks, you can’t touch anything cold (even eggs from the fridge) and feet tingle, sting, and feel kind of like a major being asleep feeling. It’s annoying. My throat and hands cleared up quickly each time. But my feet still have neuropathy. It’s getting better. Been about 10 months since they stopped oxy. But the alternative was not to get it. And the oxy worked for me. I am getting the feeling back slowly. It was worth it to me looking back.
It did look kind of silly when I went to the grocery store, tho, with my gloves so I could get stuff out of the refrigerated section. And I wore gloves at home to get things out of the fridge and freezer.
The short term effects for me were nausea. I finally just started giving in to it and after 1/2 hour or so I was fine. If I fought it I fought it for 3 days. Low blood counts (worry about infections) and tiredness were other side effects. But really, that was about it.
My side effects from Xeloda were a lot stranger but short lived.
I don’t understand why the doc wants to take him off Gemzar, tho, as I understood that to be the one main chemo used to fight this cancer in combination with other drugs. He must have his reasons. Both gem and oxy do attack the blood counts, so maybe that’s why?
KrisTeresa: Glad you have a plan. It helps emotionally, as well as physically, to know you are doing something.
You will be amazed at the people that will step up to help you. I know I was. And so many people that I don’t know, or barely know, that have stepped up to help me in many ways. It’s very humbling.
Good luck to you and Dennis. I pray the Xeloda will kick his cancer’s butt!!!
Hugs,
KrisAmy:
Great news about your dad. I always ask for a printout of my CT scan results after I meet with my onc. I can’t get them until she talks to me first. But I read all the measurements and if I find something she didn’t cover that I don’t understand, her office gets a phone call so someone will explain it to me. I try not to bother them too much, but this is my life so I want to know.
I’m glad to hear the trials are working for your dad. Please thank him for me. These trials help all of us!!!
I didn’t realize it, but I guess I could consider myself part of a trial, too, as I was on oxaliplatin and it is still in Phase III if I read the posts correctly. So hopefully my journey with oxy will help someone else, too.
Hugs,
KrisPam and Lauren:
I’ve been on both. Wen I was on oxaliplatin I only had the tumor and an enlarged lymph node that they weren’t too concerned about. The oxy kicked the $%^^ out of the tumor and the lymph node shrunk down to normal size. It does cause neuropathy, tho, and I am finally feeling my feet to almost the balls of my feet. My heels have feeling back in them. It’s like they are asleep and tingly. Hard to feel stuff. So you have to watch for cuts, etc. But it beats the alternative. It also made me nauseous for a day or 2. And I had to wear gloves to go in the fridge.
Sorry, Lauren, but you’re going to have to learn to drink room temperature drinks a few days after treatment!!
And the Xeloda caused hand/foot syndrome. That is kinda painful, red and the hands and feet can peel. I used Eucerin with Urea constantly. Slathered it on and mostly kept it under control. The tumor didn’t like the Xeloda either.
I think what they are doing is a very aggressive treatment option.
I’ve been praying that you got good news, and am sorry that it was not…. I pray that the tumors get clobbered by the oxy and the xeloda. They attack different cell structured tumors so I’m thinking it’s a smart move.
Oh, and if your insurance has a high copay for Xeloda, call Genentech. They will help you with the copays.
Love and hugs,
KrisI know how frustrating that can me! I just hope that the scan comes back with nothing serious… I’m chanting the word “lesion” over and over……
Hugs,Actually the pump is not new. Fox Chase quit using pumps a few years ago.
I went in this morning expecting a CT scan, MRI, mapping, tattoing, and a simulation. Dr. Meyer said about 3+-4 hours….
I was in for my CT scan by 9, NO MRI (he didn’t need it), mapping, tattoing and simulation. I was out of there by 10. Something that actually worked!! WOO-HOO!!! And the tattoos are smaller than my freckles. Just little tiny dots. Felt like tiny pinpricks.
They told me my breathing was really shallow. I said that was because I was on drugs for the MRI. And I always breathe shallowly when I lay on my back… I think that’s why they didn’t need the MRI. Because the nodes didn’t move much since my abdomen doesn’t move much when I’m relaxed….
Just gotta remember to take Xanax before every treatment!!
And Lainy: I had a good day yesterday. Went out with a friend to one of her friend’s houses. It was a fun veggie picnic. I had my first veggie burger. Not impressed. But I don’t like hamburgers either, so… Hung out by the pool and chatted.
I hope you got some rain!Dr. K invented (or more specifically, improved it) and she doesn’t give up control over it. She will allow ONCs and their nurses to be trained in how to administer saline and steroids, but will not allow anyone else to use chemo or glycerol in it. That’s her dept.’s job. Saline means 2 week regimens. Glycerol is long’term so I wouldn’t have to go for about 6 or so weeks. I want to get up there starting all this radiation so I can quit worrying about the pump… but it’s hard to make a quick appt. with her.
I’ve been to Princeton the last couple of times, and will go again in a week. But I have to keep going every 2 weeks when I go there. And with no treatment, I think it’s a waste….I’m still mad at Dr. K. She never called the radiologist even after calling me to say how “concerned” she was about the time frame. He had to call her today… I want to fire her, but I’ve got her stupid pump in me!!
The appt. was about 2.25 hours. Nothing really got done except he told me what WILL happen. Thurs. I go for a CT scan, MRI and tatting and mapping. They will do a simulation of the radiation. Then 5 visits. Probably starting the 16th. Every other day… then 6 weeks later Dr. K wants a CT scan and to see me.
I called her office when I got home and calmed down enough to not yell at Megan. She answers the phones and sends Dr. K. emails. I told Megan to please put in the email that “I was CONCERNED and upset that Dr. K had not called Dr. Meyer to discuss my case, since she was so CONCERNED 1.5 weeks ago”.
I also called Dr. Fong’s office and asked that he get in touch with Dr. Meyer (the radiologist) to make sure everyone agrees on the best scenario for me. Dr. K wants him to attack the tumor too, but I thought Dr. F said that was too dangerous… Dr. M said it isn’t. I just want to get started so I can finish!!!
It’s so aggravating….. If I didn’t have her stupid pump in me, I would fire Dr. K!!! I know, stress isn’t good for me…
I also talked to Dr. M about my diet. He said cutting out the processed sugars was a good thing as long as I don’t start losing too much weight. I said I’ve gained 5 lbs.!!! Go figure: I’m the only person I know who starts eating fruit- and vegetarian and GAINS weight!!!!!
