Just got back from my first follow up after 4th line chemo to learn that my markers are rising again. It was a shock to say the least as I feel well. My oncologist has said that I will be starting Topotecan asap. This is the last drug they can try. If it works they can re challenge me with previous drugs but if it doesn't it's palliative care. He has said that if I get an obstruction they will have to stop chemo. This is very frightening as I've been in and out of hospital with bowel blockage. I am absolutely gutted. Only finished 4th line chemo first week of June. I am relatively calm, is it just denial that this could be happening again so soon. Please could anyone who has used Topotecan share their experiences and whether it worked and how long remission was.
Shabila xxx
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Shabila, so sorry to read your are heading to 4th line chemo ....I just started 3rd today, for OC which has manifested in bowel tumours: small & large, and radiotherapy ruled out. Will be on carboplatin/taxol & avastin , as this combination has worked by shrinking before. Obviously the bowel tumours did cause some obstruction with faecal impaction, but an GGE last Friday helped clear this and so on lots of laxatives now. What our poor bodies have to go through with the ''' disease.
So back to your post, while I don't know anything about Topotecan, each of us reacts differently to drugs, so what suits you and is best of you, may not be the best option for me and vice-versa.
Daisies, sorry to hear you are back on chemo too. I have always responded to chemo so am hoping I'm lucky this time too. I'm also on a cocktail of laxatives, can never be too far away from a toilet, lol. Good luck xxx
I am getting ready to start my 6th line with Topotecan so I have no advice for you regarding the drug. I did not get remission after my 4th line which was Avastin and Taxol. My 5th line was Doxil only. I am not completely through the course of the 5th line but with a continuing increase in the CA 125 and positive CT Scan I insisted on a change of drugs as I feel continuing with Doxil is futile. Tomorrow is the big conference to decide if it is truly Topotecan as was last recommended.
I have just completed 5 yrs of having OC. It is a very difficult struggle to not be consumed with remission times and amount of years we get. Every time it reoccurred I had no symptoms and was always shocked that it was back. I have taken some agents and had a longer remission in the past than some women on the site and then I was on Avastin with no results and others are doing splendidly. So, to reiterate what Daisies has said, "we each react differently".
Keep your head up and continue to fight the good fight. There is always something out there to try even if it was something you had before. I feel as long as I have a decent quality of life I will push on. I wish the same for you.
Hi I am on my 5th regime after only having 3 months remission again a shock I am now on ecx chemo half way through and it is hard, also doing the cool cap which is even harder than the chemo on the day , but like you all we seem to have to go through it.
The first 10 mins is really hard you have to zone out then keep it on for 2 hrs the tightness isnot too bad and haven't lost too much hair after 2 chemos but will stick it out
I am getting ready to start my 6th line with Topotecan so I have no advice for you regarding the drug. I did not get remission after my 4th line which was Avastin and Taxol. My 5th line was Doxil only. I am not completely through the course of the 5th line but with a continuing increase in the CA 125 and positive CT Scan I insisted on a change of drugs as I feel continuing with Doxil is futile. Tomorrow is the big conference to decide if it is truly Topotecan as was last recommended.
I have just completed 5 yrs of having OC. It is a very difficult struggle to not be consumed with remission times and amount of years we get. Every time it reoccurred I had no symptoms and was always shocked that it was back. I have taken some agents and had a longer remission in the past than some women on the site and then I was on Avastin with no results and others are doing splendidly. So, to reiterate what Daisies has said, "we each react differently".
Keep your head up and continue to fight the good fight. There is always something out there to try even if it was something you had before. I feel as long as I have a decent quality of life I will push on. I wish the same for you.
fondest regards,
carol-b
Be strong Shabila. You and I are part of the old crew! I am still here, just starting 12th line treatment. Last 2 being re challenges. A few hiccups along the way. Not always to stay smiley but if we don't then the cancer takes charge of our lives and I' m blowed if I'm going to let it do that yet. Haven't sorted out all my cupboards and drawers!!!!
Did I read correctly your on you 12th line or did you mean 12 sessions? I too am 5 years down the long road having my 5th of 3rd line calyx and carboplatin, been pretty rough and I will think carefully about more chemo. If only short remission 6 months of chemo. For only 4 months remission have too question if it's worth it. Still we soldier on.
Sue, If you are on your 12 th line of chemo you are now my new hero! May I inquire how many yrs you have been treating? Your story does give hope that there is always something out there.
Yes 12 it is!.carboplatin07, carbo taxol 08. Caelyx 09, oral treosulphan 010, letrozole 10, 18 weeks weekly taxol 11, carbo gem o12, 3 drug trials at the Marsden 013, carboplatin June 14, now just having the weekly taxol again!. I know it seems a lot. Couple of remissions, stabilisations and a few knock backs. But have had a really good and fairly active independent life. Not a case of being brave or a hero. Have had a couple of hiccups on the way What else can I do. Just want you all to know that there is treatment out there, you have to go along with what your body can take. We are all different, we do all respond differently. I am lucky too in having an amazing NHS medical team. and I still have a lifetime of cupboards and drawers to sort out!
Good luck to you all. All anyone can be sure of on life is the minute you are living in. Savour it.
Sue, didn't realuse you had been through so many treatments. Love, love, love your positive mental attitude. Like yourself , I am always hopeful that whatever they throw at me will work. The not knowing is the scary part. Thank you for your message. Sometimes we just need hope and you have definitely given me that. Best wishes xxx
Wow, just finished 4th line in 4 years, and like you have still to sort through cupboards etc, maybe I feel inside that if I do it, it is admitting defeat but at the same time, I know it needs doing!
I'm so sorry to hear yours news, made all the more frustrating because you feel well. I haven't had Topotecan but hope others can advise. Hearing positive outcomes does boost us. As we know, there are so many different reactions to the same drugs. I'm currently on 3rd line Caelyx and hoping it works for me. It's strange how we can find it possible to stay calm. I personally don't think it's about denial, just having to get on and deal with things as best we can, no matter how much we feel like ranting. Maybe buy some cheap plates though, and smash them against the nearest wall!
I'm sending you my very best wishes. Stay strong x
Hi Shabila, I start Topotecan in the next few weeks for 3rd line. I haven't heard many on here talking about it but perhaps we can share our experiences with everyone as they happen. Best of luck to you x Sue you are amazing!
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