suzannegm
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Hi Trevor – It does seem yours has been caught really early which is great! I also have read that resection is the only long term cure. Mine was not caught early and after having a failed resection and about 5 months of chemo the tumors were stable so I attempted resection again in February and it was a success. I’m having “clean up” chemo now to try to get any little cells floating around out there.
Have any of your doctors talked to you about a possible resection? What’s your age? We have quite the range on this site.
Hang in there!
Hi Katie –
Keep pushing to get that port! That was one of the first things my oncologist said to have done, after my surgery last year. It’s a breeze to get the chemo drugs with a port in place. The day after I had the port put in (on my right chest just above my right breast), I felt like my shoulder and arm had been hit with a mack truck but the pain only lasted about a week.
One thing you may want to consider is what possible treatment you may have in the future. Even if you have it put in now, and only have a few more scheduled treatments left, you may have more chemo later. A port is easy to maintain, I just go to the cancer center every 4 weeks to have it flushed if it’s not accessed at least every 4 weeks.
I’m starting “clean-up” chemo tomorrow, but it’s been since January that I last had any chemo. It will last for 12 weeks. I’m going to keep my port in as long as I can, for the future, just in case.
Regarding the itching, do they give you any IV benedryl when you get chemo? IV bendryl might help but I’ve heard it’s VERY hard on the veins. Maybe you can ask them about IV or over the counter benedryl. Just a thought.
I was a inch away from cutting all my hair off because it was getting so thin, but I waited and I’m glad I did. Unless you have big bald spots, maybe consider just wearing a cute hat, like Lainy suggested.
Hang in there girl!
Hi Kris – I’m SO SO happy for you! And don’t worry about what you wrote regarding not wanting to look like a cancer patient, I worry about the same thing! I know it will happen one day (a long time from now!), but I don’t want people to treat me any different, you know? Keeping weight on is a constant battle for most of us, so you didn’t express anything we all haven’t thought at one time or another.
Hi Suzette – I’m happy to share anything and everything I know and have had done if it is of use to someone. Here is my e-mail: suzannegm@windstream.net. I look forward to hearing from her.
Here is my timeline, all done at Emory:
-July 2008: diagnosed (from the time the tumors were seen on CT scan until biospy and diagnosis was 3 days including the weekend) – left lobe of liver completely consumed by tumors
-August 2008: had a colonoscopy, upper endoscopy to make sure there was nothing going on. then the failed resection attempt – tumors found on right side. they just closed me back up.
-September 2008: started chemo – gemzar & cisplatin
-November 2008: follow up scans showed no change in size of tumors, no smaller but no progression either
-December 2008 – conferred with Dr. Kim regarding radio/chemo embolization. He is interventional radiologist who actually ended up putting me together with Dr. Kooby
-January 2009 – had liver arteriogram (aka shunt study) done in advance of radio-embolization – it’s at this time that Dr. Kim tells me that he went before the Emory tumor board to find a surgeon willing to talk to me about resection. Dr. Kooby enters the picture. I owe a HUGE debt of gratitude to Dr. Kim for doing this.I then met with Dr. Kooby, who made no promises but thought there was a chance. I then had a PET scan, which along with the liver arteriogram, and CT scan gave Dr. Kooby a good idea that nothing else was hiding inside, but again they don’t know for sure until they get in. He did tell me that if they opened me up and found any cancer outside the liver that they would not resect. I knew going into this there was a chance of another failed resection but I had to try. My surgery was Feb 18, and I was in the hospital for 13 days. I saw Dr. Kooby on March 20 and he says I am recovering ahead of schedule. I had a left lobe resection, a right lobe wedge resection, gallbladder removed, and a small portion of my left diaphragm removed, all with clean margins.
Dr. Kooby is an amazing doctor, and person. He’s soft spoken but very sure of his skill and what he can do. I met Dr. Staley 2 or 3 times in the hospital when he made rounds. He is very boistrous (spelled wrong). Personally, I prefer Dr. Kooby’s style.
Since your sister is in Macon, and Emory (Winship Cancer Institute) is so close, I would encourage her to talk to Dr. Kooby. Also, I see Dr. John Kauh, my oncologist. I get my chemo close to home but it is dictated by Dr. Kauh.
Based on what I’ve seen on this website, and other people’s experiences and treatments, I’ve found that Emory offers the same treatments and care that the Mayo clinic, MD Anderson and Johns Hopkins offers. I feel VERY comfortable that I am getting comparable treatment at Emory/Winship, without having to leave home.
I hope this helps, and if you have any questions, no matter what they are, please ask. Hang in there with your sister, this is a long road, and you will both need each other. Tell Kim to e-mail me whenever she’s ready.
Hi Foodie – Suzanne here. I’m sorry to hear about your sister, our situations seem to be very similar, I’m 43. My surgery was done at Emory, the surgeon is Dr. David Kooby. He’s a surgical oncologist. It’s been a long road to where I am now. I was diagnosed in July 2008, then went through a failed resection attempt and then about 5 months of chemo before I was referred to Dr. Kooby. I was getting ready to have radio-embolization when the interventional radiologist went before the tumor board at Emory to see if there was a doctor willing to try resection, even though I had tumors on both sides of my liver. My left lobe was entirely consumed by tumors, and I had 2 smaller tumors on my right side. This is where Dr. Kooby enters the picture. He agreed to try to resect based on my overall good health (other than cancer!), and that the tumors had remained stable (no progression) since my diagnosis. However he was very clear there was only a 50/50 chance he would be able to resect once they opened me up, also with no way to know if the cancer will come back and/or how quickly. I was left with about 25% of my liver. My recovery is going very well. I hope this helps. Please keep me posted on how your sister is doing.
foodie wrote:Hi Terri,I am so very happy to hear about your sister and the outcome of her surgery, it is really providing me with some hope too. My sister was diagnosed with intrahepatic cholangio about 4 weeks ago, we knew about two weeks before that she had cancer in her liver but they were not sure where the primary was at that point. We went to mayo 2 weeks ago in hopes that surgery would be a real possibilty. Unfortunately in the 3 1/2 weeks from the first scan the cancer had spread about 20% more. The majority of the right is covered and there is a definate spot on the left . They wanted her to do 2 rounds of chemo and then see if it shrank at all. they wanted at least 30% left . She left feeling devistated as you can imagine. she is only 41. I know in my heart that surgery is the way to go, we just need to convince someone. She has been basically asymptomatic ( with the exception of high calcium) she is young, beautiful, strong and a great m om to two awesome kids that need her.
I was hoping you could share with me your sisters doctor in atlanta, and also if the surgery was done at emory???
thank you so much and god bless you and your sister.
Congrats on the good numbers! I’m making notes about all the different chemo combos, wondering what I will go on next, post resection chemo.
jrsatlanta, I’m in the Atlanta area too. I had a resection done Feb 18 at Emory. Where are you being treated?
Kris – what do you mean you missed the window? I hope your liver levels are coming back up.
devoncat wrote:I know that I missed the “window” for chemo after 3 months. I was told I needed to wait 4 to 6 weeks after my last surgery before I could start chemo this time. So from my experience, somewhere between 1 and 3 months you need to start.Best of luck. I am happy you are recovering so well. I love good news.
Kris
Thanks to all for the info. I was told today that I need to have a new baseline scan done before I start chemo.
I guess tomorrow I will call the oncologist this week and make the appts. I was really hoping I wouldn’t have to start chemo until after my vacations in June and July. Oh well, what do you do (stop whining and get to it I guess).
Hi Ron – when I was going through chemo my red blood cells got low so I was given an injection of Procrit (Epoetin Alfa). The Procrit boosted me up enough so that I could continue with chemo, no delays. Don’t know if Procrit is in Scotland but maybe there is an equivalent injection you could get. Definitely worth asking your doc about.
Ron Smith wrote:Hi KrisSorry to hear you are having problems getting your chemo. What exactly do you mean by liver levels? Is it the liver function? My problem is my blood platelet level. I should be getting gemcitabine each week for 3 weeks followed by 1 week off, but they will only give me the chemo if my platelet level is 100 or over. After my rest week it is usually about 150 (which is on the low side of normal). By week 2 it is just over 100, but by week 3 it will be down to 70 or less, so no chemo. So my regime has become 2 weeks on followed by by 2 weeks off. Is it working? I will get an idea next week when I get my latest ct scan result.
I hope you get your problem sorted out quickly since I know from my own experience how depressing it is to build up for your chemo only to miss out. It’s very tiring.
All the best
Ron
Hi Rose May,
I was just resected in February, and prior to surgery I met with the surgeon (surgical oncologist) about a week or so prior to surgery, and then had pre-op registration about 4 days prior to surgery. It seems very strange that you don’t have a pre-op appt this close to you surgery date.
Also, I knew the surgery date and time 2-3 weeks prior to surgery. Which doctor scheduled the surgery? That is the doc I would go back to. Do you know who is doing the surgery? These are things the scheduling doc should have told you.
I don’t know what hospital you’re dealing with, but this seems very unusual. Don’t be afraid to call and make some noise. I know things are overwhelming at this point so close to such a huge surgery, but take control of the situation by making some phone calls to your doctor that scheduled the surgery or to the hospital, or the surgeon’s office. I always feel more in control when I’ve made myself make the calls, instead of fretting over whatever it is I’m worried about (which I’m really good at!).
Good luck to you on Wednesday! I am 1 month past my surgery and the surgeon says I am recovering ahead of schedule. I know you will too. We are very close in age (I’m 43), so I know you will handle the surgery and the recovery just great!
Hi Tom,
I too have lumps on my head and have had several removed in the past. I was told they were clogged oil glands. I currently have 4 or 5, but I’ve never mentioned them to any of the doctors treating me for this horrible cancer. I guess I should mention it.
When did you first notice the lumps? And do they start small, then get bigger over time?
Well, It’s me, live and in person! I finally made it down to the computer today. I was released from the hospital on March 3. 2 weeks in the hospital was MORE than enough!
I can’t thank everyone enough for the positive posts sent my way after my sister let everyone know the surgery was successful. I don’t know what I would do without her, or without this website.
I’m still having some eating issues. Getting enough protein is a hard one for me. Does anyone have any suggestions? I do have to eat every couple of hours, and I need solid food but I’m having a tough time finding foods that will go down without effort. It feels like I have a small air bubble at the base of my throat. I don’t know if this has something to do with the tube they had to put down my throat into my stomach while I was in the hospital. It doesn’t burn like acid reflux but it is definitely something. I don’t see my doc until March 27, which is when I will get the staples removed.
I’m hoping to not lose too much more weight. I can’t really afford it right now.
My entire family is SO happy the surgery was a success. Now I just have to recover and get on with my life!
Hi Irene,
I guess I am going to be really outspoken. But in no way is this any type of judgement on your decisions.
Our symptoms are very much alike. My CA19-9 level is 128, normal liver function bloodwork, and I too have been through a failed resection but I did choose to get chemo. It was nowhere near as bad as I imagined it to be, but everyone’s tolerance is different. With chemo, even with my fatigue, we were able to get into a more “normal” routine. It is possible to have a happy life even while going through chemo or other types of treatments. Just not the same happy and routine we knew before.
Irene, I have had to separate what I wish would be with what actually is. I wish my body could stay exactly as it is, virtually no symptoms, cancer not progressing. But I know it won’t. I feel that if I do nothing, it will without a doubt spread to other parts of my body. I have to do everything I can to extend my life.
I have chosen to be very aggressive in my treatment with the hope and faith that I will be here longer than if I’m not as aggressive, also with the hope and faith that the physically hard parts will all be worth it. So far I believe the path I’m on has been worth the hard parts. Emotionally it would be hard either way. I have been given the opportunity for another attempt at resection and I am going for it. Part of what brought me to this decision is, my fear of this cancer is greater than my fear of having surgery again. Also, like Kris, I do not want to have regrets for the things I didn’t do.
I wish for you peace of mind with whatever decision you make. That is a huge part of the emotional battles we all are waging with this cancer.
