Hello,
A short recap. I am Stage IIIC clear cell (diagnosed nov. 08) and after 8 treatments of Carbo / Taxol with the last 3-4 with a CA of about 20, stopped chemo in mid May 09, I recurred immediately after (Carbon refractory), and started Doxil high dose in early Sept. CA came down a bit after the 1st treatment but went up after the 2nd (today I had my third), so the doctor is considering Gemzar / Cisplatin with the addition of Avastin if we can get it.
So has any lady had Gemzar / Cisplatin or Gemzar / Cisplatin / Avastin (I will have all 3 together every 3 weeks)?
If so what was the result - did it work ? and
What were the side effects (platelets, red blood count, hair (head, eybrows, eylashes - did they fall /thin), fatigue, nausea (for how long)?
Any information would be much appreciated. I continue to work so I try to do my best to manage the symptoms like chemo on Friday to have the weekend etc.
Thank you
Best Regards
GEPI
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Gemzar / Cisplatin / Avastin
- By GEPI
- Posted November 2, 2009 at 11:51 am · 29 replies
- In Recurrence
- Shared with the public
Explore topics in this discussion:
Cancer Taxol Compazine Hysterectomy Acid reflux Ativan Avastin Fever Blisters Ovarian cancer Taxotere Pain Peripheral neuropathy Carboplatin Prilosec
29 replies
- Oldest first
- Newest first
- By blacksea_turtle
- Posted November 2, 2009 at 1:56 pm
- Report post
Dear Gepi, I am so sorry the Doxil is not working. I think Avastin will be good to add. Is it available where you live?
I have read that the Gemzar can be harsh on the blood counts, hopefully they will watch the dose.
I do get Avastin but it is every two weeks. So far no side effects, and I had 4 treatments.
Wishing you all the best and some luck too.
Take care, Elmira
- By GEPI
- Posted November 2, 2009 at 2:20 pm
- Report post
Hi,
I will need to apply for exemption to get Avastin as it is not pre-approved for ovarian. I am told I am likely to get approval. Otherwise I need to do it private.
Thanks for your wishes.
My wishes to keep going better.
GEPI
- By godshome
- Posted November 2, 2009 at 2:23 pm
- Report post
I am on the carbo/gemzar/avastin clinicial trial--And yes it does kick your butt--blood counts went so low I had to have blood transfusions & shots--But the good news is I had a CT done last monday and the results were very good--So instead of giving up on the chemo I go for my 4th tomorrow--Just grin and bear it--This to will pass--Good luck to you
- By jeaniet
- Posted November 2, 2009 at 3:28 pm
- Report post
GEPI----I started Carbo/Gemzar/Avastin on Sept 23 for my first recurrence. I was initially offered Cisplatin but refused it due to potential kidney damage, and knowing that I really really have a hard time getting enough liquids in as it is. So that it why I am Carbo, not Cisplatin.
I have had 2 complete rounds so far. The first round was Carbo/Avastin/Gemzar on day 1, and a repeat of Gemzar on day 8, and a failed Neulasta shot on day 9.... my husband accidently screwed up the Neulasta shot (I get it at home for insurance reasons) so I really didn't get it. I had a horrible reaction to ???? I have no idea which of the 3 drugs. Oncologists don't know either. I ended up with such severe pain in my back/flank/kidney area that I had a CT scan, and multiple doctor visits. My liver funtion tests were really elevated too. (still are elevated) My WBC went down to .5 and Platelets were at 16. I had infusions of RBC and platelets. I vomited even with meds, and had to use Compazine suppositories. It was all a nightmare. I was ready to stop all chemo.
Round 2 was delayed for 5 days due to the low blood/platelets. And due to how I reacted to round 1, the docs switched a little for round 2. They lowered the dose of Gemzar by 1/4, and also lowered the Carbo dose. I think I would have refused to continue if they hadn't lowered the doses. They also changed the order. Day 1 changed to Gemzar/Avastin and Day 8 changed to Gemzar/Carbo. I don't really remember the reason for the switch in days but I think it had to do with the blood stuff. I did get a successful Neulasta shot on day 9, which was last Tuesday. So I am now on my off week, with Round 3-day 1 scheduled for next Monday. The honest truth is that although I didn't have the severe pain that I had round 1, I am still pretty miserable. Just don't feel well. I sailed through Carbo/Taxol, but this is kicking my butt. My liver funtion tests are still elevated, and my liver hurts all the time. I have constant discomfort from acid reflux, although I did start Prilosec which I hope helps soon. I am so fatigued that doing much outside the house is impossible.
It seems that most other women on these drugs are NOT having the problems i had, so I bet you will be fine. Sorry to be such a downer about my experience but I wanted to be honest.
I see my primary Oncologist at UC Davis on thursday, and need a come to jesus talk about how this is going for me, and see if he has any better insight into my misery than my local Oncologist does.
Jeanie
- By jeaniet
- Posted November 2, 2009 at 3:36 pm
- Report post
Oh yeah.....getting the Avastin was not a problem.
Also, a friend who has clear cell just recurred and she is starting Avastin/Taxotere, having been told that Taxotere works well for clear cell. She also is Carbo resistant. Just FYI.
yes, I did lose most of my hair, although so far I have kept lashes, brows, and all other hair and they seem to be normal....not thin.
My Ca 125 is not a marker for me, so they use CA 27-29. It is still a little elevated, but I have had a port infection and a UTI. My doc at Davis said we will re-evaluate after the next round, and switch the Gemzar for Doxil if necessary. My guess is that he will order a PET. I had a second debulking on July 30, so have no real measurable disease except for a lymph node in my neck.
Jeanie
- By zircons
- Posted November 2, 2009 at 11:00 pm
- Report post
For my first recurrence I am participating in a phase 1 clinical study. I am using Vironistat which is in the study. It has three week cycles. The first week I have carbo, gemzar and a week of the Vironistat, the second week I have gemzar and a week of Vironistat. The third week I have nothing. I have been taking many drugs for the nausea -- Emend, Zofran, Compazine and Ativan. They seem to work, but I still don't really want to eat during the weeks on. I had to have a shot of Neulasta and 2 units of blood. I am now at the end of the cycles. Next Monday will be the end of chemo at this time. I have had to have CT scans of my abdomen and chest every six weeks. So far my CA125 is down to 18.7 and the pelvic nodes are shrinking. They were small to begin with. I had IIIC discovered originally May 2006. Was in remission for three years. I have not lost my hair with these drugs, although my hair has thinned, which the doctor said it would. Good luck and let us know what is happening with you.
- By GEPI
- Posted November 3, 2009 at 3:36 am
- Report post
Hi,
Jeaniet, Zircons,Godshome and Blacksea_turtle. Thank you for the replies.
It seems a difficult combination.
Godshome what clinical trial are you on?
Godshome and Zircons did you also loose hair etc as Jeaniet?
Best Regards
GEPI
- By bohan54
- Posted November 3, 2009 at 7:46 am
- Report post
First Gemzar Cisplatin was bad enough I wanted to quit. Hubby said try one more. Cisplatin was working if you call a reduction in CA 125 from near 5000 to 3500. Second round landed me in the hospital for 10 days of IV fluids. Not worth the reduced QOL for me. Tried 2 rounds of Gemzar alone, back up to 5000. Starting Doxil today, cross my fingers while I still can (no sores yet.) Sorry, sarcasm has increased with each chemo failure. DX in 6/2008 with no remission yet. Working with one kidney (ureter blocked) and 1 lung (pleural effusion caused it to be trapped in collapsed state.) I'm still here tho!
- By Edith
- Posted November 3, 2009 at 8:38 am
- Report post
On a more positive note, I just finished 6 cycles of cisplatin and gemzar ( carboplatin allergy) and I did not have any major problem with it. There were stomach aches and my small intestine was very bloated and noisy. No Nausea with 3 days of Zofran.
My blood counts went south after each cycle, but shot up again without any treatment. No liver problems, kidney function was slightly off. I was pumped full of hydration fluids before and after each treatment, which meant I spend 8 hours in the chair for the cisplatin day. My Ca125 remained in the 200-300 range. Same as the previous treatment with taxotere. Just got a Pet-CT scan last Friday. No results yet, but they send me through the scanner a second time "to confirm something". I was told I will get Avastin if I develop ascites.
So far the plan is to switch to Doxil starting in January, unless the Pet scan outcome demands a different action.
I had imagined misery galore before I started this treatment; it did come true, I sure glad about it.
Good luck to you, hope it works. Edith
- By Edith
- Posted November 3, 2009 at 8:48 am
- Report post
ps: my hair was gone with the taxotere, but grew back and stayed in with the cisplatin/gemzar treatment; although the growth rate is unbelievably slow.
- By Edith
- Posted November 3, 2009 at 8:50 am
- Report post
sorry, previous error. It did NOT come true!
- By mjos
- Posted November 3, 2009 at 9:09 am
- Report post
I just finished Carbo/Gemzar treatment #4, treating my first recurrence and had a reaction to the Carbo. Future treatments put me at risk for more severe reactions.
Will need steroids for 3 days prior to treatment to try to decrease the risk. Oncologist is also considering switching to Cisplatin instead of Carbo. Other option is to go with just Gemzar. Anyone else have similar experience?
- By mjos
- Posted November 3, 2009 at 9:20 am
- Report post
I just finished Carbo/Gemzar treatment #4, treating my first recurrence and had a reaction to the Carbo. Future treatments put me at risk for more severe reactions.
Will need steroids for 3 days prior to treatment to try to decrease the risk. Oncologist is also considering switching to Cisplatin instead of Carbo. Other option is to go with just Gemzar. Anyone else have similar experience?
- By ccdatty2
- Posted November 3, 2009 at 10:15 am
- Report post
GEPI:
In replying to you yesterday, I forgot to tell you that I have not lost my hair on this therapy, just thinning at th top. I found that funny since when my hair returned from the 1st 2 therapies it took the longest for the top to grow. Ironically I have always had really thick hair that used to have to be thinned.
Anyway, every one is different as it appears in all these replies to the same therapy. Although it is a recurrence I feel blessed that my side effects have been less debilitating than others. Of couse, with all therapies, the joint and muscle pain is aggravating but manageable with Ibuprofin or other anti-inflammatory drugs. Also, while I was made aware that Avastin was not currently approved for use with Ovarian Cancer, my gyn/onc also told me that if it was disapproved for my treatment the pharmaceutical company would pay for it. I do not know if that was something they had entered into with the company, but my insurance actually paid for it. You might check on that if you are denied. I think the company may do it because then they are really getting more evidence for approval in use with OC.
Hope that best for you and if you have any other questoins, please let us know.
- By MaryW
- Posted November 3, 2009 at 11:55 am
- Report post
I had cisplatin/gemzar a couple years ago and it worked for about 7 months. I was fortunate, only slight nausea which was well controlled, thinned hair and the neulasta keep the white count up. So far I have not developed any kidney problems, but I really tried to drink lots of fluid. Some people have developed a hearing loss after the cisplatin, but I missed that one, too. Only problem was that I developed peripheral neuropathy about 6 weeks after I was done with the chemo, but it was tolerable and in about a year it disappeared. I am still on chemo continuously - ovca is truly a chronic disease for me. Have been here for 5.5 years since diagnosis and have done quite well. Am on taxotere/avastin now.
I wish you well in your journey! Mary
- By moey
- Posted November 3, 2009 at 3:47 pm
- Report post
Hi,I don't want to bother you with the whole story but yes I have just finished my 6th cistplatnum & Gemzar. I work full time , on my feet all day . I have chemo every other friday. I feel tired and a little nauseated, on Monday I usually go and get an extra Liter of IV fluid and I feel soooooo much better . The pelvic pain I had and the inability to eat solid food due to a partial bowel obst. are all gone . Ca125 has dropped although I do not trust that #,its better than going up. I was diagnosed 1-02-09. 3C . I think this is a good choice for me. Looking forward to a ct scan ,I think it must be good because all the pelvic pain is gone ,but we will see. My platelets have dropped a bit ,but not awful. No sign of kidney problems at all . WBC down I get nupagen (SP) USUALLY TUES -THURS before the fri I get Chemo. I think it has all been doable for me .I hope this is helpful.Good luck
- By dwm26
- Posted November 3, 2009 at 5:23 pm
- Report post
Hi
I had cisplatin I/P taxotere I/V for initial treatment I am also 3c clear cell I finished chemo sept 08 my ca125 is still 4.
Treatment was tough but I had each treatment on time.
Good luck with this next treatment
Debbie
- By tomd
- Posted November 3, 2009 at 6:21 pm
- Report post
Check around for Avastin Clinical Trials. If you get into a Trial, the Drug Mfg. usually pays for the drug.
tomd
- By Releit
- Posted November 3, 2009 at 9:37 pm
- Report post
I was originally diagnosed 12/07 at 3C and had a full hysterectomy followed by IP Cisplatin/Taxol 6 treatments. Clear for 8 months...then carbo/taxol/avastin every three weeks with neulasta day after follow-up for sessions 3-6. My CA 125 is 9-11, the lowest it has been. I have had only hair loss-no nausea...mild neuropathy in toes. Neulasta made have flu like symptoms for a few days. I feel the Avastin made a big difference in the CA-125 count...prior to this treatment my count was 15 at its lowest. Let's just hope that the remission is longer than 8 months....Good luck to you...High Spirits, High Inspiration, High Expectations....
- By lilwitchfromok
- Posted November 4, 2009 at 12:48 am
- Report post
hey im on gemzar and cisplatin and it is harsh on your potassium , magmesium and other vitamins including iron and your blood counts but it is good im going down on my counts and only had 4 rounds so far. good luck i go in for nuelastin tomorrow so ill get back at you about what happens to that. love jay
Add to the discussion