Join now

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!

corner corner corner

Carbo/Gemzar Anyone ???

rac1942
  • By rac1942
  • Posted June 22, 2009 at 3:13 pm · 24 replies
  • In Recurrence
  • Shared with the public
0 Recommendations

I will begin taking Carbo/Gemzar for my 1st recurrence in a week or so and was wondering if anyone can give me info on these drugs and what side effects I should expect. I don't know whether to go get a wig or not. Some say "yes" and some "no". Are side effects worse than other drugs. I've had Carbo/taxol and Doxil. Are the side effects similar?? Am still in the state of shock as I am feeling great and didn't expect this news. Thanks for any info you can give me!

Explore topics in this discussion:

Exercise Cancer Taxol Surgery Hysterectomy Avastin Ulcerative colitis Blisters Ovarian cancer Chemotherapy Constipation Carboplatin

24 replies

lissa-G

Don't get a wig. I just finished 6 rounds of Carbo/Gemzar and I didn't lose my hair. It thinned a bit and the texture is a bit weird and hard to manage but it covers my head. My treatment was Carbo/Gemzar week one, Gemzar alone week two, and the third week "off". The first week I spent the first four days feeling pretty yucky. I had the treatment on Friday and would try to go to work on Tuesday. I slowly felt better throughout the week. The gemzar treatment wasn't as bad. I felt a littte light headed. The main problem with the gemzar was my red blood count kept going down and I had to get blood transfusions. I had four in all, I felt like a vampire! They brought my count up at least 2 points which made me feel a bunch better. The Carbo/Gemzar combination is supposed to be really good. I got a second opinion from a research specialist at Sloan in NYC (Dr. Sabatini). He's been researching ovarian cancer for 15 years. Unfortunately for me it controlled the cancer but it didn't get rid of it and now I'm taking an oral dose of Cytoxin and getting infused with Avastin every two weeks, hoping for the best!
Hang in there and I hope your hair hangs in there too!
Lissa

rac1942

Lissa,
Thanks so much for your reply. I am really scare when I hear blood transfusions. When were you dx with OV? Was the Carbo/Gemzar for your 1st recurrence or initial treatment?? I was dx with OV in March '06. Six rds of Carbo/Taxol did not help me but the Doxil did. Couldn't stay on Doxil as I had too many bad side effects (like blisters as big as an egg on my feet) and of course, neuropathy. Haven't heard of Cytoxin?? Is the Avastin working for you? RoseAnn

sbender3

i took carbo gemzar may of 2007 to july 2007, no help for me unfortunately. but, not one hair fell off my head.

DonnaW

I had my first recurrence in March, and am on my 5th treatment of Carbo/Gemzar for recurrence. I am finding it much easier than the Carbo/Xyotax that I was on the first time, maybe because there are no surgeries, etc.. Like Lissa, I still have my hair as well (I kept mine the first time too though) and have struggled with my red counts (only 1 transfusion so far, and I am hoping it is from someone who likes to exercise.)

I really just have one or two days after the week 1 treatment that I feel a little crummy and none week 2. I find it very manageable, and I haven't missed any work other than to go have the infusions. CA125 is going down and tumors are shrinking...

Best wishes! And, I hope this is the combo that finally works for you. Let me know if you have any questions.

msduckb

I am starting Gemzar with Cisplat next week. This is for a first reoccurence that did not respond to Doxil or Dasatinib (which was a trial drug) over the past 9 months. My understanding is that I will get an infusion on day 1 & day 8 then a few weeks off (depending on what it does to my neuropathy). Tomorrow I will have a ct guided drainage for about 2 1/2 liters of loculated ascites that is under my rib cage & has pushed my stomach to my left side. This is done periodically & I always feel much better. I am hoping if the Gemzar works then I won't have fluid issues. msduck

pjoseph

Hi. I had 4 rounds of carbo/taxol and then surgery - debulking & hysterectomy. They haven't decided yet if I am to go backon carbo/taxol or gemzar/cisplatin. I appreciate all your comments on gemzar. My hair/eyelashes/eyebrows haven't returned yet, so we will see what happens with them. I am anxious to get started with chemo again & zap what cancer cells remain. I am also anxious to return to work, but I am slowly recovering from the surgery.

rac1942

SBender3,
Loss of my hair was pretty tramatic for me so am hoping I do not lose it this time around. Of course, if I do, will go on from there. RA

rac1942

MSDuck3,
They plan to start me on Carbo/Gemzar and not Cisplat. Is that a new drug? I hope it works for you! Doxil worked for me but had too many side effects like egg sized water blisters on my feet....ouch! Good Luck to you, RA

rac1942

PJoseph,
I've noticed from reading many sites that Gemzar is given with Cisplat. I will be taking Gemzar with Carbo. Not sure what combination works the best but I know everyone is different. Pls keep me posted on how you are doing. RAC1942

lissa-G

Hey Rac1942!!

I was diagnosed in November 2006. I went into remission after the 6 rounds of carbo/taxol. That was pretty rough. The hair loss thing was hard. However, I'm a high school teacher and my students got so used to me being bald that they said that they couldn't imagine me with hair. My first recurrance was in January of 2008. It sounds like a long time but it was only a 10 month remission. I started on doxil and had 8 treatments. I also had hand and foot reactions but my doctor reduced the dose and the problem went away. After 6 treatments my pet scan said I was "cancer free". My doctor wanted me to have 2 more for good measure I guess. The cancer came back 2 months later. Carbo/gemzar was next. Midway through my treatments my CA125 was way down (15) but when I finished the last treatment the count went up. 23....then 31...then 187. So now I'm on Avastin with Cytoxin. Cytoxin is an old cancer drug that has been around for a long time. I have been followed by my doctor at Sloan and he deals with only ovarian and uturin cancer. He said it's just a matter of trying to find the combo that works. It's tough, I can't lie but I also can't complain. Many people have it much worse than me.

As far as the blood transfusions are concerned don't worry. They really do make you feel better and at this point in time it is super safe. They type and cross type you about 17 times and they administer it with two nurses present so they don't make a mistake. The first one was pretty scary but I got to the point where I knew when I needed it and I went to the doctor and said "I think I'm down a couple of pints!"

What ever you do, don't lose your sense of humor or your sense of hope. My Sloan guy said "look we have new drugs just since you were first diagnosed. It this combo does'nt work we'll find something that does"

Take care,
Lissa

quacker

I've just started cycle #5 of Gemzar and carboplatin. I still have half my hair which is a lot better than total baldness with the first chemo of carbo and topotecan. The main problem is low red cells and platelets. Needed three blood transfusions in March, but since then have been taking an herbal blood tonic from Oregon and have not needed a single Procrit injection since February. I haven't been able to get my treatments more often than once every three weeks because of low platelets. Only side effect is constipation and about a half day of fatigue on the third day.

CATSMEOW

Hi, I had my first round of carbo/gemzar three weeks ago.And was to have gemzar only the next week and one week off.DUe to the low WBC(they didnt even order the nuelasta-which previous drs. did)my gemzar was cancelled.So I was to go in today for the second round of carbo/gemzar, but alas, it was cancelled due to low platelets, hemoglobin and WBC.So I need a transfusion and will go in next Wed for the carbo/gemzar.The only problem with that treatment was very tired the few days after.I spent that weekend on the couch and had a bit of bowel issues, being backed up.Then on Monday, I was fine.No hair loss.Just low blood counts.Thats always the history with chemo for me.Keep Positive

sbender3

rac-sorry you lost your hair-i lost mine in 206, every hair, eyebrow and lash. did not bother me. i loved wearing wigs, never a bad hair day thru chemo for next 2 years, may 2007 thru feb jan 2009, no hair loss, 3 diff regimens, but that darn taxol, i had to take it 7 weeks this year, and lost my hair again. but before it could fall out, i donated it to locks of love, and i am back in my wigs. i know it bothers some, but life is easier when you don;t have to mess with your hair. i am just unhappy that i lost my hair for nothing!!!! on carbo alone now, and hair is growing back. so god be with you, peace also. love sherry(p s my picture is a wig)

Elaine1

My story is similar to the above.

Was DX in 2005, Stage 3C Aggressive Adenocarcinoma, had low dose Taxol / Carbo, lost hair and eyebrows but tolerated treatment easily, Wore wigs which I also didn't mind, then went into Firstline remission for ALMOST 3 years!

I recurred in late 2008, and was first advised to go back on Taxol / Carbo, but I asked if there was another combo which would eliminate losing my hair again. Was advised to try Carbo / Gemzar, same protocol as described earlier by others,, and tolerated treatment easily again, no complications OTHER than losing a lot of hair through constant thinning. Had to go back on wigs again, also went into remission. Only side effect ocurred regularly, very tired after last few treaments, nothing major.

Am still wearing my wigs again, hair coming back slowly, and since I color my hair normally, will wait at least 6 months before coloring again...as I did before. Treatments do damage the hair, and it's best to wait until hair self-repairs.

Hoping others opting for Carbo / Gemzar have the same easy time with it that I actually enjoed!

Elaine

Elaine1

Elaine again !

Forgot to mention I'm a Senior, 70 plus... so "Oldies", in same category..."Take Heart!!" I literally breezed through ALL my treatments.

rac1942

sbender3,
Mighty cute wig! I would enjoy mine if I looked like that....! Have you had to have any infusions through your chemotherapy?? RA

kathy6

Mom had cisplatin and taxol for initial treatment- she lost her hair. After her first recurrence, she went onto to carbo and gemzar- she lost her hair again. It didn't seem as bad as the first round, but it was harder for her to manage at times. She thinned a lot so most of the times she got away with a scarf or a hat (it was late spring into summer last year). However, after treatment her hair took much longer to grow in. After the initial treatment her hair grew back rather quickly so we expected the same with this treatment, but not so much... Also she did suffer from the low blood counts (typical of gemzar) She had two full rounds and needed both a blood transfusion and a platelet transfusion- I know it sounds really scary (because it did to us as well) but it really wasn't too bad and she felt SO much better. One thing to think about when getting a blood transfusion or a platelet transfusion- there is a clinical trial going on- they are taking the blood of people who have a certain marker in their blood and giving it to people with (all types) of cancer. These people are not taking chemo. They feel that there is something in the peoples blood with these markers that keep them from getting cancer and that they feel it can help to cure (or put into remission) others with cancer.... SO, when Mom needed the transfusions that is the way we looked at it- the transfusion was needed and it will help her and perhaps she will get lucky and get blood from someone who happens to have those markers.. Just something to keep in mind. She continued the treatments after that with just the carbo, but I think that the two full treatments were enough and she went back into remission. Her counts remained low since she was still taking treatments. It takes the body a while to regain itself and if you are still taking treatments (even if you are not taking something that can deplete you the same way) the body cannot catch up. The transfusions carried her through the rest of the treatments, but she did finish with very low counts..

I hope this helps and wasn't too confusing!!! Best of luck to you..

Kathy

sbender3

hey ra-if you mean blood transfusions, no, i have been blessed. i see an alternate care doc, and take supplements to boost my immune system. my hemoglobin was 12.2 when i got round 5 of carbo, my white blood cell count was 3.7 or so. my cancer doc is amazed, and has gone from in the beginning telling me he does not like supplements, etc, to keep up what you are doing, and keeping track of every thing i take and every change i make to that protocol. they are studying me, i guess. anyway, the lord has blessed me. i may have to walk this walk, but GOD has been good to me. i love life, i think everyone does, but i want to make the most out of every moment, and GOD is letting me do that thruout all this. i used to keep track of how many chemos i have had, and how many times i have been drained. it has gotten too much to remember . if i go back and think, i can figure it out. i just tell every one, i have had over 70 chemos, and been drained over 25 times. that covers it. i wish you well. god bless you. love and blessings, sherry

rac1942

SBender3,
What exactly do you take to keep your immune system boosted up like you have? Where do you find an alternate care doc?? Wouldn't know how to go about looking for me....help! RAC

rac1942

Elaine1,
I gather from your posting you have not had any blood infusions, right? How wonderful! Can you share anything as to what you are doing so come through chemo so well?? Do you eat or drink something special etc.?? RAC

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

OCNA: @InStyleMagazine @JanetJackson InStyle magazine's December issue features the Ovarian Cancer National Alliance http://tinyurl.com/ykjhdx6

OCNA: Two Broken Broads fight ovarian cancer ... http://www.youtube.com/watch?v=HCxv9p1dvzs&feature=player_embedded

OCNA: @JanetJackson ABC Special with Janet Jackson tonight at 10:00pm EST http://www.ovariancancer.org/2009/11/18/abc-special-with-janet-jackson/

OCNA: You are invited to our Virtual Holiday Dinner Party! http://www.ovariancancer.org/party/

OCNA: We want to serve our community better. Please help us by taking a quick moment to fill out this survey. Thanks! http://tinyurl.com/yg634a4

Group leaders

You