kris00j
Forum Replies Created
-
Posts
-
Lauren:
I live in Willow Grove, and also am primarily treated at MSKCC. I drive to Princeton for my “alternate” care because I have an infusion pump. I needed an onc’s office that was trained in filling it. You should check with your insurance to see who local is covered and make them work with Sloan. Sloan is pretty good at letting the “lesser” important stuff be done elsewhere.
I also suggest your mom get her CT scans, etc. in Basking Ridge. Much easier to get to than NYC and they ARE MSKCC.
Unfortunately, I can’t help you with an onc in the area. I hope you find one you like. That’s important. And like my Princeton onc says, he’s the “pinch hitter” for my primary onc at MSKCC.
My prayers go out to you and your mom.Donnysgirl:
As a cc patient, I can give you my side: if your company will allow you a more flexible schedule maybe you can take an occasional extra afternoon off or 1 day every couple of weeks. Some companies will even let you work extra hours to make up for the time. That would do both things: give you more time with him without smothering him.
I have to tell you that I find your post ironic because I’m trying to get back to a more normal life for a period of time so I can find a part time job!!! Every time I think I can start looking, something changes and I’m back to waiting for results from some test or other… I would LOVE to have more of a “normal” life!!
My prayers are with him that he continues to do well. My response to the family member is a resounding “raspberry”. He has responded well to chemo and there’s no reason to believe he won’t be around for a while. They are making medical advances all the time in the fight against cc. In the 16 months I have been fighting I have seen chemo trials change, radiation advances and the percentage of survival over 5 years has jumped quite significantly. I figure the longer I stick around the better my chances I get to stick around even longer.Yep, radiation is done. I’m going for a m/c ride tomorrow morning I think. It’s HOT and HUMID here today, with thunderstorms….
Lisa: You BET we got this!!! I’m praying no outside effects means lots of inside work getting done. I pray that we both get great news within the next couple of months!!
Hugs to all!I’ve learned if I want answers I need to ask and keep pushing. I am my own advocate. And I don’t like answers that don’t well me anything. I like things explained to me. And i will call the office again and again until I get a clear to me answer. And if they talk over my head, I ask them to rephrase it until I understand. My onc is famous for non-answers. I end up having to reach one of her staff to get clear answers because Dr. Kemeny is so hard to get hold of…
Today is the 5th and FINAL radiation treatment. I am so happy to be almost done. And except for some tiredness and blood counts a little low, I have no side effects. Skin looks good. They told me what to look for and to make sure I don’t expose it to sunlight without protection. I showed her my SCAR on my abdomen and said “Do you really think this will ever see the light of day again?” HAH! I don’t THINK so.
And Gavin: That’s a sight I want to see!! Or don’t I??? You in a cheerleading outfit!!
Thanks for all the support everyone!Treatment #4 done. Met with doc yesterday. Asked him if the very specific area where I was getting the intermittent pain was where the lymph nodes are and he said yes. So I asked if I could be feeling the rad working on it and he said yes. I figure I’m feeling them respond to radiation and when I get the scan in 7 weeks it will show SHRINKAGE!!! That’s my story and I’m sticking to it.
He said it takes several weeks for the swelling to go down until they can actually see how the treatment went. Right now everything is swollen and irritated.
Treatment (LAST ONE) is Friday.
Sept. 4 is my CT scan. Sept. 5 is meeting with Dr. Kemeny about results. Later that week/early next week is meeting with Dr. Meyer about results. And I KNOW that I will have to meet with Dr. Fong soon after, too, to discuss the next steps. I’m having very very few side effects from the radiation so I’m thinking it’s all being kept inside and gets to work better!
I call myself the cheerleader. I spend lots of time cheerleading for others: now it’s time to cheerlead for ME!Treatment #3 done. Machine kept breaking down. They were only about 15 minutes behind tho. Unfortunately, the machine went down twice while I was on the table. The first time I didn’t move. The second time I said I HAD to move or I was gonna start screaming. And I only had 2 more angles left. I asked if we could just ditch them after about 20 minutes and they said no. Oh, well, I tried. Got off the table and expected to meet with Dr. Meyer. Nope. Again cancelled. I will go into his office on Wed. if he doesn’t meet with me then. I’m getting tired of being pushed off. Today he was behind in clinical, so I figured his office might be full… so I didn’t push too hard. But I will! I have a loud mouth and I don’t mind using it when I feel I’m being taken advantage of.
Having some pain in the abdominal area. Hoping it means the lymph nodes are shrinking….Jyoti:
Good news seems to be the order of the day. I’m so glad your brother gets to go home for a while. As long as the pump is filled with the maintenance gel it lasts about 8 weeks which is good. No poking it every 2 weeks.
I hope the Gemzar and Erbitux cocktail works for him. I didn’t have that.
The problem is that no 2 sets of cells in our own bodies react the same to treatment, so finding the right chemo cocktail is very difficult. AND because cc is so rare, many of the chemo drugs have not been approved for fighting cc. Hopefully soon someone will have a breakthrough and figure out which are the most successful…
I hope your brother enjoys his time at home before coming back to NYC. I know it will never be far out of his mind, but tell him to enjoy the chance and LIVE with it!! Do everything he can and make lots of memories for the lonely days to come when he has to go back to NYC.You, too, Lisa!! We’re gonna be done about the same time. And it WILL work for both of us!! I figure the pain means it’s working….
7 weeks from now I get a CT scan and find out WHEN my resection is. Not IF, but WHEN!!! Let’s get this cheerleading section going.
And you are going to get fabulous news, too. You’re one step up on me: you already know it this worked for you and it’s gonna work again.
Huggs,Oh, Susie: What a bad decision. I saw The Bucket List when it came out and was so excited it was on right after my surgery. I watched about 30 minutes of it and was crying like a baby asking my then boyfriend who’s stupid idea it was to see a movie about cancer?? Of course he said it was mine…..
I stay far away from them now. I heard it was a funny take, but cancer movies hit too close to home!
Huggs,Marion: It isn’t throat discomfort. It’s that feeling you want to be sick in the back of your throat, but not enough to actually vomit.
I would definitely tell them if I thought it was something wrong. I brought my anti nausea meds with me tonight but didn’t take them.
I’ve been having an occasional sharp pain where I know the tumor is, so today I envisioned the troll munching away so fast he couldn’t keep up. I figured if I was having pain, that means scar tissue, right???? So he was busy eating this afternoon. And he was shoveling the tumor down his throat!!! Now I gotta get hom to work on the lymph nodes.2 or 5 treatments down. A little back of the mind/throat nausea going on, but it’s not too bad. I will be bringing my anti-nausea meds tonight just in case. And sitting by the outside door…
Did almost nothing yesterday after hearing about Kim. It really sent me into a spiral. So I gotta get up and dust myself off.
I do have to say they have the most uncomfortable molds made. I though it was made for my back, but there’s something sticking into one area of my back. It’s quite painful after about 45 minutes. And the head rest isn’t too comfortable, either. Both days I left with a raging headache from something poking the back of my head.
But it beats the alternative, right??
I just ask God every night to have this work….Jyoti:
As a cancer patient, he should be able to stay at the Hope Lodge free. But only with 1 caregiver. He should ask SK about that. They have a patient advocate (not the right words) person that should be able to coordinate that. At least that will help with expenses?
I am so sorry to hear all the problems he is having, and pray the growth on his scalp turns out to be nothing.
And I can understand his depression. I finally asked for Xanax because a couple of months ago I just couldn’t take it anymore. I was so tired of crying. But I also decided I want to LIVE with cancer, so as long as I can stay or act healthy enough, I am LIVING. I recently started playing free poker. It gets me out of the house and I actually forget the cancer word for a couple of hours.
I hope nothing but the best on Monday. I will be praying for good news.Jypan:
I’m sorry your brother’s pump is still leaking. Mine does too. We tried a lesser dose of the FUDR and I was able to handle it. It worked quite well on the tumor. Unfortunately, when they decided to up the dosage, my liver didn’t like it. I only received chemo thru the pump a few times. Not sure if it was worth having this thing in me, but between the oxaliplatin and the FUDR they did a great job shrinking the tumor.
I LOVE LOVE Dr. Fong. You have to get used to Dr. Kemeny. She’s definitely not a warm fuzzy person.
I had 3 embolizations to try to stop the leaks from my pump to the tumor, and the 3rd one was mostly successful. I know they try a few times to plug the leaks. She should confer with Dr. Fong about where the leak goes and then talk to you and your brother about the possibilities.
What chemo was your brother on?Thanks everyone. I was scheduled for 3pm. At a little before 2 they called and said to come at 4pm. Of course, I had already taken my Xanax… Got there at 4pm. At 5pm they finally took me back. I informed them my Xanax was now 3 hours into my system and I sure hoped it was still gonna work… After an hour I was done. Testing, scanning, testing, checking and then finally radiation.
I feel pretty good except that I was getting a headache from the folded up sheet under my head… an hour of not moving. Hard to do for a fidgit like me.
Thanks for everyone’s support. It was a tough couple of days. I’m emotionally exhausted. Thankfully I feel fine.
