kris00j
Forum Replies Created
-
Posts
-
I totally understand. I went to Genentech’s website to look up Xeloda’s side effects. Listed on another page under “other side effects” is dizziness and blurry vision (both less than 2%)! I can’t remember if o.h. was on that page or not. But before I could call my onc, Genentech themselves called me to check to see if I got my card, etc. The “nurse” on the phone ran off a list of side effects, and after about 20, guess what she got to? Dizziness. A couple of side effects later, she mentioned blurry vision. So when I called my onc’s office and talked to the nurse practitioner, I mentioned all this. She didn’t seem to want to believe me. I told her to look it up or call Genentech itself and ask.
I am still going for the MRI just in case.
But I have to thank you for posting because I feel soooooo much better now!!! Not nearly as “scanxious” as I was last night. New derivitive of the word “scanxiety”.
I hope you and all the other moderators’ ears were ringing today as I sang your praises on caringbridge!!!!
Thanks.
I will bring this up to them via phone today. I wonder why when I asked they didn’t seem to think it was Xeloda? And I specifically asked because this started a couple of days into my 2nd cycle. And I take 4300mg a day. 7 on/7 off.
And I already had a history of orthostatic hypotension.
It’s making it hard to want to ride the scooter, that’s for sure!!! I certainly don’t want to get dizzy when I’m on 4 wheels, let alone 2.They gave me a different card.
1. Nausea and vomiting
2. diarrhea
3. Mouth sores
4. loss of appetite
5. abdominal pain
6. fatigue
7. swelling in hands and feet
8. rare heart damage – they said to worry about pain in chest or arm or racing heart.
9. decrease in blood cells
10. abnormal liver functions
11. hand/foot syndromeNot a word about dizziness!!! Wonder why?
Jose:
Have you checked other hospitals you could get to? I travel 3-4 hours each way to see some of the best doctors in NY. I live near “good” hospitals but I wasn’t comfortable there.
If you have a top hospital you can get to, bring copies of all her tests and get another opinion. Quickly!
If they still say she has no hope but she can try a clinical trial, I say try it.
I am currently inoperable too. I had a small window where my surgeon wanted to resect me, and of course I got sick. So I missed it. WHEN I finally am operable (hopefully soon) I will be donating the tumor cells to research. If I didn’t have this hope of a resection soon, I would have checked into some more trials using the theraspheres and other non-radiation trials. The tumor is too close to my heart for radiation. But I am all for trials if nothing else is working. Why not?
Hope from trials: I have a good friend who is participating in a clinical trial for a very aggressive form of breast cancer. Hers was back within 3 months of her surgery and radiation. So she is participating in the trial. She figured she had nothing to lose. Traditional therapies didn’t work for her. And it’s working!! She had a perfect CT scan last week! The cells that concerned the oncologist are back to normal.And finally, as a current cc patient, age 48, I need to know what’s going on. I am my own advocate so I HAVE to know. I am also stage IV. I have a hopeful outlook but know how serious everything is. My family all knows what I want if I pass away. Most of my close friends do, too. Many of my friends have my parent’s number to call them if anything happens. Athough they live over 900 miles away, so they can’t be here quickly, they also need to know. I have no husband or children so my parents are my next of kin. And I want to know what the prognosis is so I can make plans. Before my surgery, I want to sort out many of my items and list them so my family knows who I want to leave what to. I have lots of semi-precious jewelry and would like all my female family members to get some. Things like that.
I hope you can find something to help your sister. They are coming out with so much lately, I believe we are all on our way to more hope.
Pam:
I’m so happy you heard back positively and before the weekend was even over. That shocks me!
I’m sure they’ll check to see who was on. And he might have to ask you and Lauren if she remembers any of the names. But remembering stitches should really narrow down the 1 nurse.
But she might have to try to remember names and what they look like. I hope she’s better than me there. I can’t remember the nurse’s names 2 minutes after they stick me! Or what they look like. I have way way too much to think about when going for a test like that one.
And I’m sure they will “talk” to the nurses when they figure out who it is. So I hope you get much better treatment in the future.
I know when I first started I didn’t want to “bother” anyone. Now I don’t care. It’s my pain, time, meds, or whatever and I want to be taken care of. Especially when I’m in a hospital room. I waited as long as I could last year when I had my surgery. Now I talk to the nurses, complain if I don’t like something and generally want them to remember I’m there instead of ignoring me!
I don’t want to be a pain in the keester, so I try not to be too bad, but I don’t let things slide anymore. I let them know what’s wrong!Ash,
I’m sorry to welcome you to this site, also, but you have found people with a wealth of information and experience. All of us on this site are dealing with cc in one form or another: either as the patient, caregiver/family member, surgeon, etc.
I was on Gemzar/Oxaliplatin. Oxaliplatin is another of the platin drugs, with similar side effects. I am now on Gemzar/Xeloda. Gemzar seems to be a constant with cc. I tolerate it quite well. My side effects after about 12 rounds of Gemzar continue to be low blood counts and tiredness for 1 day. That’s about it. From what I’ve read, the platin drugs are harder on the body. My side effects from oxaliplatin were nausea and neuropathy. I discovered it was easier to just let myself get sick 6 to 8 hours after chemotherapy. After about 45 minutes, I was never nauseous until the next round.
As far as mental preparation: just know we call this a roller coaster ride for a reason: there are lots of ups and downs. It’s very tough to deal with.
I hope your mother tolerates the chemo well. And I really hope she keeps a positive attitude. That really helps.Hey Lainy: There’s not THAT many people that would recognize THAT part of my person half shaved!!! heehee
And Marion, yep, modesty goes out the window. After everyone and their brother and sister drew with magic markers all over my abdomen every day after my surgery: they were marking places to watch for infection, where the pump was, etc., I lost my modesty. Since I didn’t have anything on but the gown and they kept pulling it up. They DID try to cover me, but didn’t always cover me first. I was drugged iand in pain and I REALLY DIDN’T CARE!!! But I’m 48 so yes, it’s a little different. I think even 10 years ago I would have been mortified the first time.
Pam:
I’m so glad I made you laugh. We don’t have eough to laugh about these days.Oh, and I forgot: the first try for the embolization I was still in the hospital. They lost me and my parents were going nuts. They didn’t bother to tell any of us I had to be immobile for 4 hours and they stuck me in a back recovery room. My nurse went off duty and no one came to see how I was. It was horrible. I finally broke down and pressed the call button so I could get a pain pill after a while. It took about 5 minutes for someone to get to me. I’m not sure they knew where I was!!
So now every time they take me back somewhere I specifically ask when my parents can expect to come back (or whoever I’m with), how long everything will take, etc….
It was a mess!
And I tell them paper tape only! I do that everywhere: I’m just used to that. Even when I have a blood test I say I want paper tape.Pam: I read your response after I sent the first note. I am so glad I’ve been so out of it I don’t even remember them shaving me! Here’s a chuckle for you about my experiences: I had no idea I was going to get shaved. When I woke up the dr. told me I was shaved. But when I went to get changed I discovered they only did half! That happened 2 times. I told them to just shave the whole thing the 3rd time but they didn’t. One of the few things I’ve gotten a chuckle about. My ex boyfriend and I got a huge chuckle out of it.
KrisPam and Lauren:
Sorry Lauren had such a bad “pre-procedure” experience. Sounds like some didn’t care and some didn’t read…
I had 3 embolizations thru my groin and the last one they used the “good” closure. The first two I laid on the stretchers for 4 hours before I was allowed to move. And I HATE bedpans!
I’ve been praying her testing went well. I hope she feels better soon.
KrisMarion:
I wasn’t sure I wanted the liver to be necrotic for long tho. I’m trusting my doc but sometimes they don’t tell me everything. And I don’t always understand but don’t think of questions until another day…Oh, well. Adding to this one.
Does anyone know how long I can leave the liver after the embolization? I’m a little worried about necrosis. I had the embolization March 5 and haven’t had a CT scan since March 26 where they saw some possible necrosis.
Started 4 cycles of Xeloda and I don’t think we are even going to look at surgery before June 12ish.Grover:
So sorry to hear about the runaway rollercoaster. I sure hope things are back on track to stay. I think of you often and pray for your health every night.Cindy: Those platin drugs do that. I had to give up ice cream last summer and fall when I was on oxaliplatin. It stunk. I know I shouldn’t eat it, bacause of the sugars etc. but I don’t care. Ice cream and chocolate are what make life worth living! (and my new scooter!! heehee)
I hope you are doing well.
