1 (edited by cyjcho Wed, 12 Jan 2011 18:15:03)

Topic: Mom on Gemzar/Cisplatin Cycle 2

Hello all!
My mother who is 63 years old at a stature of 5 foot tall and 78 pounds decided to go forward with chemo procedure. A combination of Gemzar and Cisplatin - 2 weeks on & 1 week off. Our family was initially weary of chemo due to potential side effects and some dangers that could present during and after treatments especially following her major weight loss post-Whipple procedure that was done in early May of last year. However, mom decided that she wanted to give it a chance with God and her family by her side.
My mother started her first chemo on 12/20- Cisplatin 30mg/Gemzar 1250mg. Prior to her chemo meds, she was given Zofran (25mg), Dexamethazone(10mg) and Ativan(0.5mg) to prevent nausea in addition to tons of saline all via IV through a port that was surgically inserted. Following mom's first chemo, as you can imagine, our entire family was on a wait-and-watch mode all day and everyday. But so thankfully, no nausea and her appetite remained.
Then mom's 2nd chemo was a week after following the same regimen with WBC of 3.61 and CA19-9 at 480. My mom's oncologist thought the CA19-9 level was really elevated but decided to continue with the treatment since its still way too early to tell especially with our mom doing so well after 1st treatment. By the end of 1st cycle, our mom continued to have appetite and walked for at least 30 minutes to an hour daily.

1 of cycle 2 was on 1/10. Mom's WBC rose to 4.1 however her CA19-9 level was even more elevated at 592. Nonetheless, mom's condition overall has been pretty positive. She even weighed 1.5 lbs more since her first chemo 3 weeks ago. When we asked about mom's CA19-9 level to her oncologist, the doc said its still too early on in the treatment to switch over to other meds. So we decided to finish cycle 2 (2 of cycle 2 scheduled for 1/17) and then get a CT scan to see the activities of tumors. Mom's oncologist also commented that judging by my mom's overall condition, it seems that the treatment is working for her however, sometimes, when chemo is actually killing off the masses, it releases proteins that goes into the bloodstreams, causing an elevation in CA19-9 level. Hoping that is what is happening and not tumors growing.

Though our family has been in great spirits and very thankful for our mom's overall well being her CA19-9 level got us in a worrisome mode again.

Has anyone else experienced similar situation? and if anyone could share anything to do with CA19-9 level and actual tumors, your comments would be greatly appreciated!

Christie

Re: Mom on Gemzar/Cisplatin Cycle 2

Hi Christie, I will try to give you a little insight into tumor markers.  First of all, you must take the results with a grain of salt.  It is not a perfect science and I am not a fan of the tumor marker.  I had a 10 cm tumor, so clearly I  had cancer, but my tumor markers were never elevated, not even close.  They were always normal.  How could my tumor markers be normal when I had such a huge tumor?  Therefore, some doctors don't even use them, as they are not considered very reliable.  I would concentrate more on CT Scans and PET Scans to show if the treatment is working.  I was on the same regimen, and my cancer cells (at the cellular level on PET Scan) actually doubled while on this treatment.  I believe I was on it for 4 months until I finally convinced my doctors that it wasn't working.  With that said, this treatment has worked for a lot of people, so don't go by my results.  Everyone is an individual and responds differently.  I did handle the treatment well, however.  I had them lower my saline amount since my body didn't handle the large amount of fluids.  I also did not take any anti-nausea meds during my treatment, as they seemed to bother me more than taking nothing.  I never had nausea or vomiting.  Cisplatin is very hard on the kidneys, which is why they really push the fluids.  Drinking is very important while on this drug.  You can learn more about my story on this site if you have time.  It is listed in the intro section  under "My inspirational story".  I would love to learn more about your mother's case.  It is difficult to advise you further without knowing more of her history.  If I can help in any way, please call upon me.  I try to visit this site often, but if you would like to email me, I always check my emails.  My email is kcirucci@msn.com.  Please keep me posted, and best of luck to your mom.  You are in my prayers!!

3 (edited by marions Wed, 12 Jan 2011 23:16:16)

Re: Mom on Gemzar/Cisplatin Cycle 2

Christie....in addition to Kim's great explanation I would like to enclose a link regarding tumor markers:
http://www.cancer.net/patient/All+About … or+Markers
Best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

4 (edited by cyjcho Sun, 23 Jan 2011 22:23:06)

Re: Mom on Gemzar/Cisplatin Cycle 2

Thank you Kim for your insight and your kind consideration! I read your story and I was in awe! Thank you so much for sharing your story! It was truly inspirational! and Marion, thank you for the helpful link!

So here's an update. Mom finished her cycle 2 on 1/17, Monday. She was very tired and definitely her condition was different from previous treatments. Her CA19-9 level elevated as high as 834. Then following Wednesday, mom had a fever of 104.8 so we hauled her to the emergency room and she is still in the hospital.. its been 4 days, going on fifth. Found out she had an infection in her blood in addition to a blood clot in one of major vessels that passes through her liver from her heart, which in turn, she now has to get blood thinning shots called Lovenox every 12 hours. On top of that, mom's CT showed that there's still a progression in tumors and therefore we are back to square one. We were given options 1. switch chemo treatments to 5FU + oxailplatin 2. stop the treatment altogether. Though we are very discouraged, our mom has decided to go forward with a new regimen of treatments. We were told we have about 15% chance of chemo working on our mom, but we still have hope.

Mom's lower abdomen's been swelling up in the last 3-4 days, she's scheduled to get an ultrasound tomorrow morning to see how much fluid had built up. One of the attendee during weekend said that we would need to talk to our oncologist on Monday when she returns, but he believes the swelling is from her tumors.. while another attendee said that the swelling is from her blood clot. Excess fluids not being able to "flow through" due to clot is building up, causing the bloating of the abdomen. I will have to get this straightened out tomorrow morning once her oncologist returns, but has anyone experienced or experiencing the same symptom out there? If so, I would really appreciate any insight.

Re: Mom on Gemzar/Cisplatin Cycle 2

Christie...The great roller coaster ride of this cancer, this is what we call it.  Blood clots can form in gastric cancers.  They are called Trousseau sign of malignancies.  Here is a link:

http://en.wikipedia.org/wiki/Trousseau_ … ite_note-2

and here are some  members postings referring to blod clots

cholangiocarcinoma.org/punbb/viewtopic.php?pid=5953

www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=7063

http://www.cholangiocarcinoma.org/punbb … hp?id=1345

We have also seen fluid buildup caused by the tumor. (Ascities)

Here are some postings:
www.cholangiocarcinoma.org/punbb/viewtopic.php?id=600

www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=15808

If you are up to it you may use the google function (top bar) by entering either: blood clots ascities and numerous threads will appear.
But, mostly I am wishing for the blood infection to be controlled real soon.  This is also something we have seen frequently.
My fingers are crossed for a quick recovery and an informative conversation with your Mom's oncologist.
Hang in there.  And, please stay in touch.
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Mom on Gemzar/Cisplatin Cycle 2

My husband had the fluid build up.  He had it drained about four times.  The first time they took off 10 liters he lost 24 lbs., while he was in the hospital they took off 16 liters and he lost 40 lbs.  Then they put in a stent so when he went home, I could drain it.  Wayne had been on coumadine 7.5 mg. for 10 years after his open heart surgery.  They switched him to Lovenox while taking chemo.  His first tumor marker was 5,000.  After a few treatments it did go down to 900.  Then he started to throw up blood.  That was the beginning of the end, on Feb. 17th 2010 at 4:27, God took him away from me.  In two days it will be a year.

I LOVE WAYNE,  Terry

Love to my Wayne for 36 years
I'm not a widow, I am a wife
We are only apart for heaven's sake
You are waiting for me at heaven's gate

Re: Mom on Gemzar/Cisplatin Cycle 2

Terry.
sorry to hear about Wayne. I hope you're doing better for he is watching over you.

Re: Mom on Gemzar/Cisplatin Cycle 2

It's been while since I last posted something on this site but a lot has been going on. Since mom's last cycle of Gem/Cis on January 17th she's been going in and out of the hospital. Emergency to ICU to home and then all over again for the last couple of months or so. Three weeks ago, mom's oncologist told us that she would like for my mom to start taking Xeloda+oxailplatin while the window of opportunity is still open as soon as her infections in the liver calms down. Mom was discharged three weeks ago from the hospital with take-home antibiotics. Then just last week, we had to bring in our mom back to the hospital due to low blood pressure combined with high temp of 102+. Found out she has C-Diff (common bacterial in bowel) so she's been on Flagyl for the past week now. Then this week, we were told that any chemo would put my mom at much more risks so basically told her we should look into in-home hospice care. We were told last week that my mom has less than six months to go with or without chemo but today, we were told she has maybe a week left. I don't believe everything the doctors say but its left a big hole in our family's hearts. We don't want to lose hope but I can't help but to be discouraged. So now we're looking into hospice care in Houston. I was wondering if anyone's had any recommendations. The hospital's social worker is looking up options for us but looks like there aren't too many to chose from. I was also wondering if anyone's had or going through hospice care for themselves or for their family who can pass on some knowledge. We've had a couple consults but I am hoping for personal testimonials. I don't feel like this is the end... Maybe I'm in a denial but any thoughts on alternative meds, hospice care, doctors/hospitals would be great.
Btw- I just bought some Essiac from Vitamin Shoppe and some Korean Ginseng extract in hopes that it will elevate my mom's appetite. I will keep you posted.

Christie

Re: Mom on Gemzar/Cisplatin Cycle 2

Dear Christie, I am so very sorry about your Mom's downturn. Have you sought out another opinion? Being upset is one thing but if you feel in your gut that the doctor is right, then it is time to have your ONC call in Hospice. Hospice means comfort and care, it does not mean the end. The Doctor calls them and they come to the house rather quickly, give Mom an evaluation and then get to work. They will make her very comfortable and see to it that she has everything she wants. IF you think you are at that point they will take a heavy load off of you so that you can use the time then being with Mom. Have you thought about taking Mom to MD Anderson? They are one of the best for CC and are right in Houston. Also you might want to  give them a call and see if they or your doctor can give you some Hospice recommendations. Best wishes to your family and especially to your Mom.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Mom on Gemzar/Cisplatin Cycle 2

Hi Lainy. I appreciate your advice. We actually did look into MD Anderson but they asked for a HUGE sum of money for down pay since my mom doesn't have health insurance or medicare. So she is currently at the Methodist referred by a former pathologist from MDA. As for hospice, we have decided on Houston Hospice and now just waiting for the discharge from the doc. In the meantime, mom's swelling in her abdomen and legs have gone down a bit. I think Lasix is working its magic in addition to no more fluids for the past 3 days or so. I've been reading about swellings for those who are about to pass in the near future and it really scared me. So my brother and I have been religiously massaging my mom's legs, feet and back for the last several days.. and when we see the swellings subside a bit, I can let out a brief sigh of relief. I know its temporary but it really helps to go on everyday. Its good to hope right? Hope you have a great weekend, Lainy and everyone else on this awesome site!

Re: Mom on Gemzar/Cisplatin Cycle 2

I am so glad you seem to have things under control. Comfort is now the key word and you are doing a great job with your mom. Hospice comes right away once the doctor asks them. You will be very happy they came as they will help with everyone's comfort. Now you can spend this time making it family time. Wishing you all the best and please let us know how things go.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.