Gemcytobine Anyone?

• By Carmeta
• Posted February 16, 2008 at 8:00 am
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I think most gyn-onc are reluctant to overdo the carboplatin with more chemo after the initial treatment is over if there is no clinical evidence of disease at that point. Allergic reactions to carboplatin are common because, as I understand it, the platinum builds up in our bodies and at some point our systems decide to reject it. That's not a scientific explanation, but it more or less describes what I've been told.

The testing on my tumor cells indicted that Gemzar and Cisplatin would be the most effective, and my gyn-onc did not even give me that option, as he thought taxol-carboplatin would work and cause me fewer bad side effects. He stopped the treatment after six rounds, as the tests showed NED and my CA-125 was down to 18. I try hard not to look back and ask "what if" but I sometimes did about that decision, especially whether I should have had two more taxol/carbo treatments at that time. At the time of my recurrence, I was put on Gemzar and Carboplatin, and I had an allergic reaction to the Carbo with the second dose. The two drugs together wiped out my platelets down to 3,000 and knocked down my red blood cells as well. I have just finished a course of antibiotics for an infection (staph?) of unknown origin. I have had a platelets transfusion, to which I had an allergic reaction that made me feel like I was dying, and I have had a red blood cells (packed) transfusion. All this within the last few weeks.

So--if you decide to go ahead with the Gem/Carbo immediately after your current treatment, I'd recommend you fully understand the quality of life issues/risks with that regimen.

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• By lea1
• Posted February 17, 2008 at 7:49 pm
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In reference to gemzar, on my mother's 2nd recurrence (3rd debulking), the tumor slides showed that she should respond to Gemzar/Carbo, which she began in September. Her CA-125 dropped to 7 after 2 rounds of infusions and her December scan showed a reduction in size of the one remaining tumor. On the third infusion, she had a reaction to the carbo and began doing gemzar alone. As Carmeta said, the majority of people develop a reaction to carbo, typically after the 8th or 9th infusion. The gemzar alone did not seem to be working and by January, her CA-125 had gotten so high, they stopped chemo altogether and sent her for another scan. She now has a met to the liver in addition to an increase in size of the previous tumor. The gemzar consistently caused her to have a high fever (called a gemzar fever) and severe flu-like symptoms.

I have a question for Carmeta: I read in a previous post that you get treated at MD Anderson and I see that you live in FL. My mother also gets treatment at MD Anderson and lives in the Ft. Lauderdale area. Her doc at Anderson suggested she begin Avastin/Taxotere. We are in the process of trying as quickly as possible to get her insurance to pay for the Avastin. Do you have experience with this treatment protocol? And does anyone have experience with mets to the liver?

Thanks!

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• By Carmeta
• Posted February 17, 2008 at 9:08 pm
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Lea,
I get my treatments here in Florida, but go to MD Anderson for periodic testing, second opinion consultation, and access to clinical trials when that becomes appropriate.

It is good you mentioned that Gemzar alone may not work--I need to be prepared for that bad news. I'm also glad your mentioned the flu-like symptoms. I wake up every day not knowing how I'll feel, and I have so many queasy sensations, that it has created a lot of anxiety for me. I wonder if something else is going on that has nothing to do with the OC, but instead has to be with my cardio-vascular system.

When I was first diagnosed, in Sept 2006, I was in Minnesota, and my insurance company approved Avastin for me. It seems to vary with each insurance company and perhaps each individual case. Avastin caused high blood pressure, tachycardia, nose bleeds and some other symptoms I no longer remember. Unfortunately, it was not as effective as they had hoped it would be for me. I had Avastin with Taxol and Carboplatin, not taxotere.

This probably doesn't help answer your questions, but your information was helpful for me.

Your mother is lucky to have such a caring daughter! I hope you get some answers soon.

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• By DonnaW
• Posted February 18, 2008 at 5:01 pm
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Carmeta,

Thank you so much for your insight. This is exactly the type of information I was hoping to get, and helps me develop the list of questions I want to ask my gyn/onc as we decide next steps. He said we would have a discussion after my 6th treatment, and come to a decision jointly.

I hope that you are doing better now, and that your blood counts and staph infection are improving.

Thanks again,

Donna

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• By DonnaW
• Posted February 18, 2008 at 5:09 pm
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Lea,

Thank you for the information you provided. As I mentioned to Carmeta, this is exactly the info I was hoping to get. I really want to have good questions for my gyn-onc as we decide what to do next.

I hope all goes well with your mother's future treatments.

Donna

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• By lea1
• Posted February 18, 2008 at 6:23 pm
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My mom does basically the same as you, she gets treated in Florida, but goes to MD Anderson for her scans and consultations. I'm sorry the Avastin combo didn't work for you, I hope the Gemzar does. Everyone reacts differently, so maybe that will do the trick for you and the Avastin will be good for my mom.

Thank you for the information about Avastin's effects. My mom is always worried when starting something new because she's had terrible side effects in the past. It is so helpful to get people's personal experiences. As a med student, I know that the doctors' knowledge is so often limited in that sense, and patients know a lot more about the side effects. I'm amazed that many times my professors don't know as much as I do about certain things, having gone through all this with my mom. And other times, I learn things in class that explain problems my mom's docs haven't been able to. Basically, from what I know about chemo and cancer in general, you're going to get a lot of weird, bothersome, inexplicable side effects. Some are dangerous and some are benign, so it's good to always report them. My mom is an anxious person by nature and she's really had to do a lot of work not letting all of these strange feelings inside her make her crazy.

Good luck to you both, Carmeta and Donna. Let's all just keep hoping that they can come up with good treatments that really make a difference for people living with this horrible disease. I'm hopeful they're on the horizon, we just have to hang in there...

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• By Carmeta
• Posted February 19, 2008 at 10:12 am
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lea,
Thank you for your reply to my comment. When my daughter was in medical school, nearly ten years ago, ovarian cancer was not on her radar screen, and when I described my early symptoms to her two years ago, and wondered if it could be ovarian cancer, her medical education was of no help.

As a medical student, you can help in the awareness campaign, so that future gastroenterologists, gynecologists and urologists will be more aware of OC as a possible diagnosis and screen for OC as well as other possible diagnoses.
When I was first diagnosed, my internist (who was the only person to suggest a CA-125 test and scan), knowing that I am, like your mom, by nature an anxious person, prescribed some Xanax for me to take as needed. I didn't take any for the longest time, but recently I have had two scares where I took a Xanax, and it helped keep me calm. I also learned that regular exercise, such as a 20 minute walk, does wonders in relieving anxiety. It's amazing, but effective.

By the way, this past weekend I had a consistently high heart rate--pulse in the 90's--so I called my oncology nurse first thing Monday morning and she said it is not uncommon. She thought the Dekadron (from chemo last Wed.) may be accumulating and causing it. I'm not sure about that. Although my BP was not the slightest elevated, I was afraid to do anything that might increase my heart rate. She told me to get up and take a walk, which was just the advice I needed.

My best to your mom and you. We have learned that ignoring things happening to our bodies got us into trouble, so we are hyperalert to "all of these strange feelings inside" us, as you so aptly put it. This is a daily learning experience for all of us.

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• By lea1
• Posted February 19, 2008 at 8:54 pm
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Steroids can cause a lot of side effects, as I'm sure you know. They can cause either a racing heart or a slow heart rate, it just depends. Again, it could just be one of those inexplicable effects of chemo, cancer, premeds, whatever. A light walk was a good idea.

It is true that ovarian cancer has not been a focus for many physicians in the past. Luckily, I think health care professionals are being made more aware of it. We definitely spend a lot more time on breast, colon, and lung cancers, but we are taught to be on the lookout for ovarian. The symptoms are so vague and a lot of doctors have a tendency to dismiss the bloating, GI reflux, and general fatigue many people present with. We've been taught to do transvaginal ultrasounds and CA-125s on people we suspect, which could potentially at least diagnose the problem earlier. My mom presented with symptoms 8 months before she was diagnosed at stage III, and she made 3 separate visits to her gynecologist during that time. I don't think he even considered that it might be cancer possibly because she was relatively young. In my opinion, he should have known better being that he was the head of the gyn/oncology department at the University of Miami!! It makes me so angry, but I guess the best I can do is try to help others NOT have to go through this. My mom is my best friend and this is truly my worst nightmare, just like it is hers.

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• By chef47
• Posted February 20, 2008 at 7:37 am
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Lea,

My mother in law has just been diagnosed with mets to liver. She is starting on doxil in 2 weeks. This is her third go of chem in the last 7 years. After her initial diagnosis and debulking part of her treatment was Gemcytobine. She had very good results. I am also wanting more info about the liver mets. Doc says he was surprised by this. Thanks and God Bless!

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• By leshapiro
• Posted February 20, 2008 at 8:20 am
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Some of the comments posted in response to your request mentioned Avastin so I thought I would weigh in. I was dx Feb '07 with stage IIIB and first round chemo was the combination of carbo and taxol in a clinical trial with the carbo delivered IP instead of IV. Had six treatments and everything looked good. Unfortunately, I relapsed in Jan '07 and went on a clinical trial for Evastuarin (a targeted drug similar to Avastin). Didn't work for me either. I decided I was through with clinical trials since I had also been on one for a vaccine to prevent a recurrence immediately following my first round of chem. Obviuosly, I "flunked" out of that one due to my recurrence.

At that point, I went for etoposide which is administered as a pill. I was only on it for about a month before ascites started to build in my abdomen which caused hospitalization when they had to remove the fluid. I was never as sick as I was then. While I was hospitalized (Fox Chase Cancer Center in Philadelphia), my doctor recommended a combination of Avastin infused every other week and a pill once a day which is Cytoxin (now available in generic). I have been on this regimen since June and thank God, it seems to be working with very little side effects. My blood pressure is elevated (which it never was) but under control with simple blood pressure meds. Other than digestive issues which I've had since my first treatment, I feel very well. The doctor actually used the word remission in October after my last CT scan combined with the low CA-125 numbers. It's a word I thought I would never hear again. I don't know how long it will last or how long my insurance will continue to pay for the Avastin but for now, I just take each day as all of you do as well. We have no other choice.

I just wanted to comment in case anyone else is offered Avastin, wondering if it works for anyone and worried about the side effects. God bless all of us. That's really where our fate lies.
Linda

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• By lea1
• Posted February 20, 2008 at 3:36 pm
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Linda,

Thank you so much for the information on Avastin. I am so glad it's working for you! There are so many drugs out there, it's kind of a crap shoot to find the combination that works for each person. It is also very encouraging that even when things aren't looking so good, they can take a turn for the better.

Can I ask you where your recurrence occurred? Did you have metastases or was it a local recurrence?

Keep fighting!

Lea

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• By leshapiro
• Posted February 20, 2008 at 3:44 pm
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Lea,

Thank you for the good wishes.

It was a local recurrence. First, they found a small tumor on the base of the vagina and then after a routine CT scan while I was on Evastaurin, they found an additional tiny one on the liver. After being on Avastin and Cytoxin for a couple of months, the first scan showed a reduction in the size of both tumors. In October, they could not find any evidence of either.

My concern now is how long they will let me stay on the regimen for two reasons, one, how long will insurance continue to pay and will they be afraid for me to continue because no one knows the long term effects of this drug on the body. It's too new and used for different things in different ways. I'm afraid I'll have a recurrence even though I'm on the drugs. I definitely am concerned as to what will happen if I go off. Of course, I know that no matter what, I'll deal with it. There is no other choice.

Good luck to you as well.

Linda

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• By lea1
• Posted February 20, 2008 at 3:45 pm
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chef,

I know going through 3 chemos in 7 years is not something any of us would wish on anyone, but to be honest, I am encouraged that your mother-in-law is still fighting this. Chemo now allows people to live much longer lives, and I'm hoping it prolongs my mom's. My mom did 2 cylces of Doxil after 4 cycles of carbo/taxol after her original diagnosis and debulking. She tolerated it pretty well and had an 8 month remission after that. It did cause a rash all over her body that lasted a few months, even after chemo was stopped.

If you find any more info on the liver mets, please keep me posted and I'll do the same. Thank you and good luck to your mother-in-law and your family.

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• By rac1942
• Posted June 23, 2009 at 6:11 pm
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Donna W,
Sounds like you have tolerated the Carbo/Gemzar well. Am praying I will do the same. The blood tranfusions really scare me. Sounds like heavy duty stuff. Please give me any info or advice you have for Carbo/Gemzar treatments. Thxs! RA

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