February 16, 2012 at 8:03 pm #56310gavinModerator
I posted this to you yesterday when you asked how to post under the Introdictions part of the site –
Welcome to the site. That would be great if you could introduce yourself to us all as that way your posts won’t get lost in other threads. If you go to the “Introductions” board that is found under the Discussion Boards then you can introduce yourself there. Here is the link to the Introductions page –
http://www.cholangiocarcinoma.org/punbb … .php?id=18
Then just click on the “post new topic” icon on the top of the right hand side of the screen. After doing that it will bring up a new page, then just write a title to your new thread then post away! Hope that helps and lookin forward to reading your posts and hearing about your son
GavinFebruary 16, 2012 at 6:33 am #56309
Rachel go to our Home Page and scroll down to INTRODUCTIONS. Click on INtroductions. When the page flips to Introductions on the right side it will say “New Post” click on that and a space will appear to write your Intro. You can also copy it from the previous post and paste it to the new site.February 16, 2012 at 5:17 am #56308rhikeMember
I need help posting my son’s history on this website. I don’t know how to start on the introduction section so I was looking thru all the post on chemo. I have located a local doctor who could patch up some of my son’s liver but there is no guarentee that the cancer will stop. I was told by his oncologist that Gemzar and Cisplaitin may stop the progressing on the tumor. I was told by the gasto doctor that there is no way that a surgeon would even attempt to remove the tumor because his cancer is stage 4, has lots of cancer in his liver, pancreas problems. He is on drugs constandly for his pain and he just wants to die. My son did 3 sessions – 2 were with cisplatin but his kidneys had problems so the last session was only Gemzar. I don’t know where to turn. I have called his oncolgist and asked for a CT scan. She told me that my son would needf two more session before she would do a CT scan. I don’t believe that the chemo has helped him as he has been sick since he started the chemo. I intend to donate money to research of this disease to John Hopkins, and to this web site. I would like my post be provided to everyone, but just don’t how to do it.
RachelFebruary 15, 2012 at 5:06 am #56307pcl1029Member
I am a cancer patient for sometime now,did your son recently have a follow up CAT SCAN OR MRI done to see whether the6 treatments works or not.( normally with chemo treatment , the scans should be done every 3-4month to monitor the progress of the therapy.) is it possible you email me the “impression ” segment of the most recent scan report for me to take a look for what alternative your son can have.I am not a doctor, but I may be of help to your son in terms of information. Like other member of this board said, 45 is too young to give up.
2nd opinion from John Hopkins liver specialist is a good start to evaluate your son’s case. Remember,nothing is impossible,hoping for the best and prepare for the unknown is part of this journey for this cancer.
Did he on Gemzar only or with other chemo agents like cisplatin or oxaliplatin or caboplatin .?
God bless.February 15, 2012 at 4:41 am #56306
45 is too young to give up! I concur with Lainy to post in the introduction section, it will open up the floor to many more comments. Lainy also had some good questions regarding tumor size, metastasis, and location that would help others provide additional input for you. We wish you the best for your son and get that second opinion for sure.February 15, 2012 at 3:12 am #56305
Dear Rhike, welcome to our wonderful family and I am so very sorry to hear about your son. I would suggest that it is still not too late to get that second opinion. It can’t hurt a thing. I feel that part of the reason your son is down is because he has no game plan. A game plan always puts one in to a fighting mode. He also has age on his side. I am wondering how big the tumor is. Has it metastised? Where is it located? And where is he being treated. May I also suggest you post your introductions under INTRODUCTIONs as it might get lost on this other thread. Did the Doctor say why they can’t remove the tumor? You have come to the right place and I hope we can help, just need a little more information.February 15, 2012 at 2:43 am #56304rhikeMember
I am new to this website. My son who is 45 has been on Gemzar for six treatments and has been very ill. He has decided to quit Chemo. According to the doctors he has, there is nothing that can be done to remove the tumor. He has lost 50 lbs since November 18th, the day he was told that he was terminal. My question now is, why did his oncologist put him on Gemzar in the first place. We did not get a 2nd opinion at a major cancer center. My son has decided to go on hospice. I think he has no hope to live anymore with the nausea and vomiting that happem with the chemo or it could be the cancer. He is my only child and he wants me to let him go. I am still interested in clinical trials but at this point, I don’t think he is strong enough to go thru another experience. What would you do if you were in my shoes?
RachelFebruary 12, 2012 at 3:07 pm #56303kris00jParticipant
Derin: Have a great time!! Sounds like you’ve barely slowed down. I hope the chemo stays as a “small nuisance”. I don’t think I’ve done as much in the past year as you’ve done this past month. Just reading your posts make me tired!
Enjoy the dance with your daughter and keep posting. It’s making me feel like a lazy bum!!
KrisFebruary 12, 2012 at 4:30 am #56302
It was at 0.9 about 3-4 weeks ago, and said if it was lower than that they would have to do something about it but the number rose each successive week. I’ll see how the bloodwork does this Friday and ask a few more questions…
Very good day today, bunch of house cleaning with the whole family, gym for an hour with my son and he did his fencing while I hit the sauna/steam room after the workout. Cleaned up my father-in-law’s grill (burners were pretty gunked up, have new guts ordered to install on Monday if they arrive so we ‘prepped’ today) and then have relaxed the rest of the night. Mitzvah Day tomorrow instead of Hebrew school for my daughter, so the whole family will go to donate some time to a worthy cause (not sure what we do yet, we will find out when we get there!) and tomorrow night is Daddy Daughter dance at one of Sydney’s friend’s synagogue so we get to dress up and have some fun!February 11, 2012 at 11:11 pm #56301EliParticipant
Watch out for dropping neutrophil counts (ANC 1.6). Stay on top of your oncologist if ANC drops further. You run the risk of catching infections if neutrophils drop too low.
FYI, our oncologist prescribed Neupogen shots when my wife’s ANC dropped to 1.4. Neupogen worked very well. The last ANC reading was 5.8.February 11, 2012 at 12:53 pm #56300
You go, Derin!! You are the best! Wish I could loose some of your water for you…still weaning off my steroids. Had a Girl’s night Thursday in Scottsdale. Dinner, karaoke, and a live trio who sang for 2 hours and sang only Motown!!!! It was great. Of course most of you are probably too young to know Motown and I couldn’t dance on the floor due to my swollen ankles from the Pred but MAN did I chair dance! Couldn’t sit still to that music and I was exhausted! A night out does wonders and I just love reading your posts. it goes without saying…keep up the good work!!! Think your wife would mind if I sent you a huge hug? Here goes!February 11, 2012 at 4:49 am #56299
Well, here I am wired again. Gotta love the steroids… Here are the bloodwork numbers:
WBC 3.4 (4.2 last week)
Hgb 13.4 (13.5)
HCT 41.2 (41.7)
Plat 308 (257)
ANC 1.6 (2.2)
I thought chemo was supposed to lower the platelets?? No nausea (thanks Emend), and all week I didn’t have to take a Zofran at all! 5 hour day, 8 trips to the potty, and got home to do about 3 hours of work. Then cooked three very nice 16oz rib steaks on the grille with sweet potatoes and a 100% organic salad.
Gave the wife a girls night out with friends in the neighborhood (yes, that meant I did all of the dishes and cleaned up the whole kitchen, but hey, steroid wired, might as well!) and she still isn’t home yet so hope she is having a good time. Hope everyone has a great weekend!! Hey, just heard the garage door open, gotta run!!February 10, 2012 at 4:04 am #56298pamelaParticipant
Hope everything goes well for you tomorrow, Derin. Take care.
-PamFebruary 9, 2012 at 3:07 pm #56297
Dose 2 of Gem/Cis tomorrow. Another 5 hour session with 10 trips to the bathroom, joy joy!! I have a prescription for Zofran and haven’t had to use any at this point. The Emend seems to do the trick for the first 3 days and afterwards I haven’t been feeling anything out of the ordinary. I was a bit tired on Tuesday night (maybe from the gym on Mon/Tue evenings) so I went to sleep at 9:30 and didn’t wake up until 8am, what a great night sleep! Hoping I won’t be as wired tomorrow night after the treatment, those steroids jack you up something fierce!! Hope all is well with everyone else…February 6, 2012 at 12:25 am #56296kris00jParticipant
It’s funny that so many of us have sleeping problems. I’ve never been able to sleep a whole night but chemo really knocked me off kilter. I always thought it was the steroids that made me sleep less. Of course, with no chemo since November I have to figure out something else.
Now I think it’s just the brain that won’t shut up. I fall asleep and then around 2 or 3 I wake up thinking, “what if I ask my dr. this? or that?” or “what if this happens?” and then I can’t sleep. It’s a good thing I got laid off and don’t work!
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