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I would like to talk with anyone who has had this course of chemo. Topotecan/Carboplatin
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Topotecan
- By thewishmaker
- Posted August 26, 2008 at 5:23 pm · 28 replies
- In Side effects of treatment
- Shared with the public
Explore topics in this discussion:
Cancer Taxol Surgery Avastin Cervical cancer Ovarian cancer Anxiety Taxotere Chemotherapy Cytoxan Pain Carboplatin Benadryl
28 replies
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- Newest first
- By jolock2004
- Posted August 27, 2008 at 7:52 am
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Hello,
I just finished 6 cycles of Topotecan alone. It was fairly easy to tolerate. I'm not sure how it is with carbo added. My numbers fell immediately after the 1st cycle. I hope you have sucess with it. ....Joanne
- By sbender3
- Posted August 27, 2008 at 12:21 pm
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I HAD GEMZAR AND CARBO, 3 CYCLES OF 2 TREATMENTS LAST YEAR MAY THRU AUGUST, DIDN'T WORK, BUT NUMBERS STAYED STEADY. THEN HAD TOPETEKAN ALONE SEPTEMBER THRU NOVEMBER, KEPT NUMBERS AT 117, BUT DIDN'T WORK. THEY ARE TRYING ALL SORTS OF COMBINATIONS. I HAVE BEEN ON NABOLENE, AND I AM NOT SPELLING IT RIGHT I AM SURE, FOR THE PAST 7 MONTHS, FINISHING MY 8TH CYCLE TODAY. IT IS THE ONLY ONE THAT HAS WORKED FOR ME, AND MY CA125 IS DOWN TO 42.7. GOOD LUCK AND GOD BLESS.
- By Martha2
- Posted August 28, 2008 at 7:01 am
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I don't have much time to respond but i did Topo/Carbo last year and it was relatively easy compared to Taxol and Carbo. Always bounced back pretty quick and my hair only thinned. The effects though do seem to build up after a three or four and are a little be more so but i guess that's pretty typical. Gook luck. Martha.
- By Carmeta
- Posted November 20, 2008 at 11:04 am
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My first infusion of Topotecan will be on Monday, November 24. I would like to hear from other women who have experienced Topo either in conjunction with another drug or alone. I'll have mine with Avastin, which I tolerate well. But I'd like to know what to expect--the handout showing side effects looks scary--and I want to fly to Maryland to spend Thanksgiving with my children and grandchildren. For comparison purposes, I've had taxol, carboplatin, gemzar and cytoxan in the last two years, so I'm familiar with all sorts of side effects, from digestive troubles to neuropathy, to low energy, to myelosuppression, to hair loss (which was the least troubling for me).
- By thewishmaker
- Posted November 20, 2008 at 11:14 am
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I just finished 4 rounds of Topotecan.....from what you said about the side effects of the others not much is different with Topotecan other than a loss of appetite and that I did not lose my hair.....I shaved my head in preparation for losing all of it only to look like a GI Jane (Demi Moore movie) for the last 3 months. My hair has thinned out quite a bit but there was really no need to shave my head.
As for the loss of appetite......you just don't taste anything for a few days......and then all of a sudden its gone and you are STARVING!
Happy Thanksgiving!
Jenny
- By quiltmaker
- Posted November 20, 2008 at 2:55 pm
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Hello to all,
This is my first time on this site or any like it
I will be starting Topotecan 12/11. I was diaognosed January 15 2008, and had my last treatment on July 10, I had a PET scan in August and it showed no more cancer. On November 5 my dr did another surgery to try to fine my sorce of pain and fix up my wound that would not heal. He sent samples off to pathology during surgry and low and behold small microscopic cancer cells appeared in the scar tissue. I am so worried that this is going to be as bad as the first drugs. I just wish I knew what to expect.
Thanks for listening
Pam
- By ilisten
- Posted December 31, 2008 at 10:53 am
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Hello my chosen sisters,
I just wrote to SaraKathryn this morning and told her that I would start Topotecan on Monday and that I planned to do a search here for it and see what I could find out. I told her that I would read unless I found stuff that brought me down.
And true to you, my sisters, I have found stuff that really makes me feel better and part of a group of women who support, love beyond measure and share with a goodness of heart that is awesome.
Of course, I read your anxiety and pain and uncertainty, and I know that all of that is normal with this diagnosis. But I also read courage and determination, and resolve and experience to share and hope. I read information that will help me get through, and help me not listen to my committee in my head when a few of them get negative. (Don't you just want to smack those few?)
I was diagnosed in 2006 with oc3a, had optimal debulking and started carbo/taxotere (after one awefully hard round of carbo/taxol), was in remission for 21 months, and was rediagnosed after slowly climbing CA125 and removal of scar tissue that held small cells of cancer. My CT was always clear.
Have been on 2 complete rounds of carbo/gemzar since early November, that have not worked. Tried for a trial of Avastin/taxotere but couldn't get in because of previous use of taxotere. SO I start on Topotecan Monday and apparently if it works I will stay on it indefinitely..... not sure how that works but am hopeful and willing to try it.
Especially now, thanks to you.
Blessings and warmest thoughts to each of you in 2009. Make it your very best year ever.
iListen
- By ilisten
- Posted December 31, 2008 at 10:54 am
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Hi Carmete,
How did you get Avastin?
Warmly,
iListen
- By Carmeta
- Posted December 31, 2008 at 11:37 am
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I have been fortunate that Medicare (I was 65 when diagnosed with Stage IIIc, suboptimal debulking) and my supplementary insurances have reimbursed for my Avastin. When I started Avastin with oral Cytoxin, we charged the Avastin on our credit card until the doctor was reimbursed, and then the doctor reimbursed us. The doctor got advanced authorization for the Avastin I'm currently receiving with Topotecan. The EOBs are confusing as to which source is actually paying, or whether it is a combination of both, but it may be that I lucked into the right supplementary insurance. I don't know what would have happened if I had not been old enough to be on Medicare.
- By ilisten
- Posted December 31, 2008 at 1:58 pm
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Thanks Carmeta,
I'm about 9 months from Medicare so no go for that one.
Thanks for the info though.
Best,
IListen
- By Gia
- Posted January 1, 2009 at 4:10 pm
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Carmeta---I am interested why the cytoxan was stopped and Topetecan was started. I am starting Avastin and oral cytoxan on Tues and concerned if oral drugs work very well. Best to all, Gia
- By danzer56
- Posted January 1, 2009 at 9:49 pm
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Hi, I don't visit this site very often but noticed your message. I am on Topotecan alone and having very few side effects. Although this is my 8th drug and we can't seem to find one that will slow down the process and kill some of the cancer cells. I've had carbo 2 years ago it was a very hard drug for me, very sick, lost weight, all my hair. I wish you all the best. I've been battling now 2 1/2 years with stage iv
Kathy
- By Carmeta
- Posted January 2, 2009 at 10:43 am
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Gia,
Stopping the oral cytoxin was a "judgment call" by my oncologist at MD Anderson. Last May he had put me on the cytoxin (with Avastin) to give my bone marrow a rest. The combination of oral cytoxin (actually it was the generic, which I wonder could be less effective than the real stuff) and Avastin stopped the progression of my tumors for a while, reduced my CA-125 and actually caused shrinkage of most of my tumors, but then my CA-125 was starting to trend back upward and the CT scan showed mixed results.
So he recommended I continue the Avastin (doubling the amount) and start the Topotecan every week for three weeks and then none the fourth week. The initial dosing schedule proved too harsh on my bone marrow, so I'm on an every-other-week schedule now. Time will tell if it is working at this dosage and on this schedule.
I wonder if at some point I can go back on the Cytoxin, as it was easy to take, had minimal side effects and at least, with the Avastin, worked to slow the progression of my tumors and keep them basically under control.
Carmeta
- By Gia
- Posted January 2, 2009 at 12:29 pm
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Thanks for the information Carmeta. I hope I find success as you have with these drugs. Good luck to you with the Topoetcan and best wishes to all of us. Gia
- By Phyllismay
- Posted February 22, 2009 at 2:36 am
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I have just started topotecan, a last resort for me as I am now allergic to carboplatin the one drug that worked for me. Carboplatin kept me fairly well since diagnosis in 2002 but have now had four allergic responses in spite of desensitisation. I am hoping to keep my hair as I have now lost it three times trying other treatments which failed to work. At christmas I had a colon obstruction and was obliged to have an emergency colostomy to prevent imminent perforation. I am just about coping with the resulting stoma but starting chemotherapy has prevented it settling into any routine and I have had several embarrassing times when the stoma bags have failed while I have been shopping with friends or out at lunch. I'm off to see the stoma nurse tomorrow and am hoping for a magic solution!
I am still however hopeful that I will gain some more good quality time. My niece gets maried in May and spring is on the way so it would be nice to enjoy the summer. Results on topotecan seem variable in different trials and studies but my oncologist reports some good results, even on patients who have responded to little else.
When I was too ill for surgery in 2002 no-one guessed I would still be enjoying life in 2009.
Love, hope and prayers to all of you out there who are going through the same uncertainties and problems that I am having.
- By Cattamer
- Posted February 22, 2009 at 11:03 am
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My older Sis did topo for over 2 years with great results ( counts kept going backup but initially went from hundreds to teens in Ca count), then back just a couple of months ago it stopped getting results, they added avastin, still nothing on the Ca125, now she is just doing avastin( with nominal results). Worried yes I am as she has also done radiation, and USUALY avastin is contraindicated...for someone who has had radiation, and normally not done as a stand alone drug..rather it assists other drugs to perform better.
I should also add she is now a 6+ year survivor with 3C and full recurrence in less than 6 months.
Hang in there...topo is still rated at a 1 in 5 getting results, but I have only heard great things ( especially about being a monoclonal so no hair loss), that is always a good thing.
Hugs
Linda
- By thewishmaker
- Posted February 22, 2009 at 1:14 pm
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Phyllismay,
I think we can all relate to what you wrote when you said in 2002 when you were so ill, no one guessed you'd still be enjoying life in 2009! I was pretty much told the same thing.......poor prognosis......they were looking at test results......ha! But they don't know me!!
As for the Topotecan.....well, I thought it was "the wonder drug".........Topo as I called it became my friend! The side effects are nothing like Taxol and I never had a reaction to it like I have Taxol.....I hope my friend Topo will bring you some comfort in good results.
I read a wonderful book "How To Live Between Office Visits" by Bernie Sigel, M.D. I think it will inspire you and bring you some peace at this time in your journey!. If you can't find it, let me know and I will send you mine!
You can smell Spring in the air, huh? Meee toooo!
Jenny
- By Phyllismay
- Posted February 22, 2009 at 2:33 pm
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Dear Jenny and Linda, Many thanks for the good news on topotecan response, also on hair loss. Having just had my first haircut in eighteen months I really do not want to lose this hard earned hair again.
Being in the UK we do not have radiotherapy for ovca, nor do we have access to the wide variety of drugs available in the US. Avastin has not yet been licensed here for ovarian cancer and would then need to be approved by NICE in order to be funded for NHS patients. These formalities can take some years.
Your words of encouragement help me to face tomorrow's topotecan with something approaching enthusiasm. Bless you both.
Love and hugs
Phyllismay
- By its_my_goliath
- Posted February 22, 2009 at 2:54 pm
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I hope you all don't mind me in here. But I am going to be doing Topotecan for cervical cancer re-occurence.
I have done 6 weeks of radiation and 4 round of Cisplatin for the cervical tumor and pelvic lymph nodes, then it moved on to my abdominal lymph nodes. Just finishing up the radiation and Cisplatin. Then comes Topotecan.
I'm encouraged by your posts. I'm young with 2 small kids and totally scared they won't find anything to kill this cancer for good.
- By thewishmaker
- Posted February 23, 2009 at 9:59 am
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I suppose we can let you in our club since you are a part of "the plan" in general and what good would ovaries be without a cervix!!! LOL!!
I know how scared you must be... love your family and make every day special........fight the battle life has thrown your way with determination......and remember we are all just like credit cards......we are here on borrowed time and we all have an expiration date.......
There are a lot of drugs out there and the research that is being done now for gynecological cancers should give us all hope....... stay positive!!
Enjoy today!
Jenny
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