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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 its_my_goliath
- Posted March 3, 2009 at 6:32 pm
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That is very true. I had Cisplatin twice now and the first time was so different than the first. Not timing wise but the pre-med stuff.
Thanks!
- By thewishmaker
- Posted March 2, 2009 at 2:39 pm
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I think it all depends on the oncologist....I did 3 days then off for 21. I also did Carbo with the Topo.
The premeds were benadryl, and steroids....decadron and emends for nausea.....(don't quote me on that though)
- By its_my_goliath
- Posted March 2, 2009 at 12:49 pm
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What are the cycles of Topo like? How long does it take to infuse? Premeds?
My doc said I would do 5 days straight then once monthly.
Although, she is now unsure if Topo will be the drug or something else... Scary.
- By Phyllismay
- Posted March 2, 2009 at 12:36 am
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Dear Terry,
It must be hard on you to see your mum going through this.
Just be persistent with the fluids if she doesn't feel like them. Any liquids will do but you must think of some strategy that will make your mum drink more. When I had ascites it was difficult to even find room for small sips of water but I persisted and kept up with the small sips or a straw and I drank whatever I fancied. Sometimes I just had water. Now I make myself fruit smoothies or buy flavoured or pro-biotic milk drinks. Or tastes can change so quickly. Put the glass in your mother's hand and try and encourage her to drink it all rather than put it down again. She is so lucky to have you keeping an eye out for her! Keep up the good work!
I work for my cancer network and we have most meetings in Tewkesbury. Whenever I can I light candles for my wonderful sisters in our beautiful mediaeval abbey . It unites the prayer across the world today with our sisters long gone, who also prayed for divine help with their feminine afflictions. There is always a candle glowing here for you all and the stones of the walls are sacred with out prayers over hundreds of years. god bless!
- By momanderson920
- Posted March 1, 2009 at 2:12 pm
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I totally remember how I felt when either the chemo had worn off or when my chemo ended. Being able to do everyday things was like Christmas with each new accomplishment. This disease really brings us back into focus on the really important things in life that so many take for granted. I am so happy that you are doing well. I lit a candle at church today for all my sisters in treatment, newly diagnosed, or in a recurrence. God hears our prayers.
- By Phyllismay
- Posted February 28, 2009 at 9:45 pm
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My third IV of topotecan on Monday and we will check my tumour marker two weeks after that. Astonishingly I feel much better. I have felt almost euphorically happy. This week I went into Shrewsbury and spent around two hours in town checking out the local shops and even bought myself a new outfit. I had to keep stopping for a rest but two months ago after the colostomy I thought that such a simple feat would be totally beyond me. I can't tell you how much I enjoyed doing such a mundane and normal thing. It was wonderful. Life is full of surprises and it doesn't get much better than a shopping trip for someone who thought that energy levels would never again allow such a simple pleasure. So nice to feel normal again.
- By thewishmaker
- Posted February 24, 2009 at 1:16 pm
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Fruit Smooooothies!! and milkshakes!! But no pineapple in it as for some reason pineapple burned my mouth.....
I hated sweets on Topo but loved salty......
Also, water is easier to get down for me it I use a straw after chemo when the "bad taste" effect hits.
Hope this helps.
- By specialT65
- Posted February 24, 2009 at 10:54 am
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Phyllismay,
I relate so well with you. My 71 year old mom was diagnosed with bowel obstruction and recurrence of stage IV OC and underwent surgery on 120809 exactly 10 months to the day from initial diagnosis. She now has a permanent colostomy because she has a frozen pelvis.
She was started on Topotecan and has had only 2 treatments. She had no appetite for several weeks after coming home from hospital. Then she was feeling better, then 3 weeks ago she stopped eating and drinking and last week was in renal failure. She has now been in hospital again for 7 days. Kidneys are returning to normal function but we have been told it is a long slow process because she has other problems she's fighting also.
I wondered if the Topotecan was causing the loss of appetite.
Can anyone suggest what we can do to encourage at least fluid intake during those days after chemo when she won't want to eat? I know this will be some time before she gets started back on the chemo but i want to be armed with anything that will help.
Thanks for any suggesions,
Terry
- 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
- 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 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 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 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 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 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 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 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 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 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 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.
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