Nursnana

Hi Nancy,

It sounds like you're doing very well, and are on your way... I'm glad some of the things I wrote for you are helping. Sometimes I find that answers to my questions create more questions in my mind; that's good because I can only digest so much at one time.

The only reason the Dr. choose a Smart Port for me was because they last longer (years) and they can us that, instead of an IV for CT scans. I'm very happy that the insurance you have is so good. We certainly don't need the anxiety of Dr. bills on top of everything else we have to face.

You said that you suffer from arthritis and fibromyalgia, and that the Dr. said that your arthritis would get better with the chemo. IT'S TRUE! Isn't it great that something will be better. I have to admit that I didn't really notice that until I went off the chemo for 2 months. Then, all of a sudden, I was creaky and in pain again in my joints. Now that I'm back on chemo I don't notice any more joint problems!

I think it would be very good for you to talk to the nurse practitioner or the Dr. about whether or not they routinely give IV prednisone before chemo. When they did with me the first time it was way too much (same as when they give me too much extra with surgery); and I couldn't sleep or rest for a week . Now I just take 2 extra milligrams a day for 3 days after chemo and I'm fine. I guess that would be 7 mg. a day instead of 5 for you, but be sure to ask the Dr. or nurse. I think my body is just used to functioning with the small amount I take, and even a little more - not to mention even the minimum amount through the IV - and it is just too much to absorb correctly.

Exhaustion and fatigue (and chemo brain) seem to come on little by little with an accumulation of chemo treatments. The biggest problem I have had is extreme tiredness caused by anemia from low red blood counts. I think you'll know how you feel. If you feel like it, go ahead and exercise with your chair DVD or yoga. You might even feel like going out for a short walk, or walk around the house or yard (or out to dinner or a movie!) when the arthritis symptoms lessen or go away with the chemo. My Dr. said to get up out of my chair and move around or exercise for at least 10 minutes every 2 hours. I even feel better if I go for short walks, with my IV pole in tow, around the chemo room/office during chemo.

I know you're going to do well; ZI'll write more later. Joyce

Nursnana, You seem to be leaning toward getting the chemo your Dr. recommends for you. Making the decision to get chemo after a lumpectomy for breast cancer 7 years ago was the hardest decision I have ever had to make. However, after that experience, the decision to have (and now continue to have) chemo with a gemzar and cisplatin combination was easy...

First of all, I would recommend getting a port (I have what's called a "Smart Port") put in. It's another expensive procedure, but not near as expensive as the chemo treatments. I don't know what kind of insurance you have, but my catastrophic coverage of $5000 out of pocket was taken care of with the co-pays for less than 2 treatments of chemo...

I'm sure your Dr. will go over all of the pros and cons in your case. He (or she - my oncologist is a woman) will answer any questions you may have; but, in my case, the chemo nurses giving me the treatments each time are the "hands on" sources for information. Chemo nurses and facilities are a special breed of humanity. They are loving family who care for each individual patient in the way that is most comforting to that person. They see us at out best, worst, lowest, and highest points, and everything in between.

As far as side effects go I'm sure each case is different. In my case, I'm allergic to MANY medications. Over the years I have learned to question everything that goes into my body. I was told that the worst side effect of my "poison" was nausea. The Dr. said that they had been able to overcome that to a great extent by infusing aloxie and emend along with saline, prednisone, and benedryl before starting the infusion of the chemo drugs. I am on a maintenance dose of 3 mg. of prednisone a day for Crohn's disease, and when I'm getting chemo I take a 25 mg. tablet of benedryl before bed to help me sleep.

On my first chemo treatment day the chemo nurses started me on the saline bag first. Then they gave me a bag of prednisone and another of benedryl. (I think they do that with all of the chemo patients to help with the nausea and anxiety). Unfortunately, I had a bad (flushed, very dizzy, fainting) spell when the benedryl and prednisone infusions went in. It was probably just too much too fast for my system. I was able to take the gemzar and cisplatin, however; and now I just get the saline, emand and aloxie before my infusions of the chemo. My Dr. prescribed 5 mg. of prednisone for two or three days after an infusion (instead of my normal 3 mg.) to help with the exhaustion that the chemo brings with it.

Another thing your Dr. will probably tell you is that the side effects are cumulative; for the first month or so they won't be so bad. I agree with you that handling all of this is easier when you know what to expect. I was told to expect exhaustion, blood counts going down, sometimes to dangerous levels, (then they want to give you a shot of Neulasta - I had to fight not to have that & just waited until my counts went back up because I didn't need any more side effects), low red blood and platelet counts (the blood transfusions really worked when I needed them), "chemo brain" (just don't plan on doing your taxes, paying bills, cooking or going grocery shopping, or remembering what day it is... , and exhaustion.

On the positive side, my oncologist said that any skin problems I had would clear up, and things like the arthritis, etc. would get better. Everything she told me about side effects was true; however, any and all of my complaints were dealt with immediately and effectively.

I won't say that this chemo was easy; it wasn't; and I couldn't have done it without my husband and daughter as caregivers... But the peace of mind that I was doing everything that I could to get better made it all worth it. Even knowing that I have stage IV gallbladder cancer that can't be treated with surgery hasn't deterred me from beginning another round of chemotherapy with gemzar and cisplatin because I know it worked perfectly to destroy and shrink most of the tumors I had before, and I'm sure it will continue to work for me now. This time around my Dr. has ordered 1 treatment every two weeks (instead of the 2 treatments a week apart and then 2 weeks off before the next cycle) in order to keep some of the worst side effects at bay. I'm sure your Drs. will individualize your treatments also.

I will be happy to tell you more about what I have experienced with these drugs and chemo if it will help you. I also can give you some practical help for your days at the infusion center. Feel free to ask, or comment, or just write down your feelings and fears, and I'll be happy to answer here or by email - whatever makes you comfortable...

Good luck and God Bless you, Joyce

Hi Nursana, Your news is WONDERFUL!!! Your news is a wonderful Christmas present for all of us...

My last visit with the surgeon, after a biopsy of a lymph node near the gallbladder, told me that I won't be having surgery (probably ever) because there is still active cancer in that lymph node, even though it's shrunk about half the size it was. Many of the other lesions in the gallbladder, liver, etc. have shrunk or disappeared, but because it's still active in the lymph node, surgery isn't an option.

I had to stop the chemo I was getting (that had successfully shrunk so much of the cancer) because, as my oncologist put it, "it was killing me"... My blood counts had plummeted several times, and I needed blood transfusions four times over the 4 months of chemo. However, short of "killing me" it did it's job to shrink or eliminate everything so much. The Dr. used the term "in remission" which I assume means it isn't growing right now.

The surgeon, oncologist, and tumor board gave me several options which basically boiled down to: 1.) Do nothing and live well for a year or so until it grows again. 2.) Treat it with whatever chemo works best while giving me a better quality of life until all of the active cancer has shrunk as much as it can; then monitor it every three months. 3.) Wait until I have some symptoms that tell the Drs. it's growing again, and then treat it with chemo or biologics. They told me that I would definitely live longer if I chose to do something rather than nothing.

It seems that my case is difficult for them because my case is unique in that we found out about it just by a fluke with a CT scan done because my breast cancer tumor markers were elevated. I've had no symptoms, no gall stones, no jaundice, no pain, etc. So, they have no studies to go by because they've never encountered anyone who has Stage IV gallbladder cancer with no symptoms, and who responds so well to the chemo they gave me.

I have chosen #2. I will have another CT scan on the 19th. of this month as the new baseline. I'll begin (on the 21st. of December) the same chemo I had before (Gemzar & Cisplatin) with infusions every two weeks instead of once a week for two weeks and then two weeks off. My body should be able to handle that easier and give it a longer time to recover between treatments. The oncologist said that they can't give me chemo forever, but that they'll give me as much as I can handle and shrink everything as much as possible. Then, just for good measure, they'll give me two more chemo treatments before they stop and just monitor my progress. She indicated that somewhere down the road after this chemo (I read years down the road) if it starts growing again there might be some other chemo, or a recently studied new biologic that is very good but not released yet, that might be good for me.

So, for now and for many years to come, I'm LIVING LIFE with cancer as a chronic disease just as I have been living life with Crohn's disease and arthritis... It will be a good holiday season, and "Spring Shall Come"!

I'm so thankful you're doing well, Nursana! Just think; no cancer in lymph nodes or liver... Hurray! I know it's a hard journey; I think you'll be OK with chemo or radiation when and if that comes. Please keep me posted on your progress. Were or are you a nurse? You sound like the kind of caring person who helps others.

welcome to the site, feel free to drop a question on the question board, there are a lot of great people here to help out. Lot's going through treatment, lot's of survivors to show you that you can beat what your facing!

Just a note of FYI for you, the way this site works, you will get lots' more response by posting the questions on the questions page, more people see it there.

If you have any questions about how the page works, or need help with anything, please ask. We are all here to help.

If you want to find other people with the same diagnoses as you, just go to the people tab, then use the search feature on the left of the page to narrow down what you want to find. You can then go to that person's page and talk to them directly if you need to.

Thanks for being here.

Greg P
3X Survivor
Team WhatNext
Community Mgr.

Welcome to Whatnext. Best wishes to you and your family. It seems like you have a good attitude and a good support team at home.

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