Looking for people that have this and have had successful chemo, if so, what chemo? I had 3 cycles of taxol/carbo before my debulking which didnt do anything to shrink the tumours, however I had many and they were large. Ive had my surgery and have a 'flap' of OC left on my diaphragm. They said theres no point trying with taxol carbo again because it didnt work but I have heard people successfully having carboplatin only. Because theres 'not much' OC left, is it worth me having that regime again as theres less cancer to work against.If I suggested it to my onc would she refuse?
Im having a ct this week then seeing the onc who will prob put me on letrozole, this 'buys me time' until I poss go on a trial. I just feel as though they have tried the 'standard' regime and arent prepared to give me any more chemo yet until I get ill. Well, I wasnt ill when I had extensive tumours so I dont want to watch and wait for symptoms. I just feel like I have been 'shelved' and they are waiting for it to spread where its really bad. Its not a nice place for me to be right now, I have OC but Im not being treated.
Anyone else?
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sunny1
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My cancer is also papillary serous (but mine is high grade). I understand this is the most common type of oc. Trouble is, it does not mean we all respond to the same treatments. It seems to me the only way forward for treatment is to be able to analyze our cancers more deeply and personalize which chemos they respond to, and I think we are a long way from that. I get a bit fed up when I read that high grade serous is aggressive but on the plus side responds well to treatment, as mine does not. So I have the worst of both worlds. It does show however, these sub types cover a multitude of cancers, and we are nowhere near yet sub catagorizing them to determine effective treatments.
Thanks Lizzie for your reply. Thing is, I dont understand how mine is low grade as I had spread throughout the omentum/behind my spleen/ovaries etc and had a lot removed. If its low grade and 'slow growing' then how did it get so bad? I cant help thinking they have got it wrong somewhere.
What treatments have responded for you in any shape or form?
I also have have a low grade serous papillary cancer. I also had some high grade cells I had 5 cycles of carboplatin which stablised my cancer. I still have some residual disease also on my diaphragm, there is also thickening of the wall in the chest and some evidence of calcification in the lymph nodes (I was told this meant evidence of disease there). I am like you waiting for symptoms to reappear before they will give me more treatment because evidence shows that the cancer responds best to chemo this way. I also came across the John Hopkins site with women in a similar situation. Since I've been off chemo I've been feeling well with the odd panic symptoms for OC are so generalised but my CA 125 has been falling and I have my next check up on the 7 June. I have not been offered any trials I sometimes feel like the chemo I had was a wast of time and I put myself through it for nothing. I found the fatigue and sickness spoilt my quality of life for very little benefit so I am sceptical about any future treatments
Seems we are in a aimilar position scardycat. I have residual disease on the diaphragm and as far as I know thats all (ct scan thurs). The ct before my op only revealed what I already know so unless something terrible has been going on inside me since my op then I hope that it is 'only' there.
Thing is, they told me to wait for symptoms but Im not happy to do that, I had zero symptoms when my cancer was extensive, so what the hell do I look out for? Im prob being put on latrozole for maintainence and then scanned again in 3 months.
Did the 5 cycles of carboplatin make you ill then? I had 3 cycles before my op and was ok, the marsden have suggested that 'if' my cancer starts to gro, to poss go on weekly taxol.
Lizzie is right in saying theres a long way to go before we gt personaliised treatments and in the meantime we have to trust the onc's to do their best with what they have.
My Onc told me quite truthfully at my first visit just 3 years ago there was no treatment that he could give me that would kill off the cancer for ever, however there were lots of treatments and combinations thereof that he would try for as long as we (as a team) felt that I would benefit. If, like Sunny, I felt I had been sidelined for more treatment then a referral to another centre who would fight for me would be a priority. I find it totally reassuring to know my onc has more treatment still available and buying me time ... Sunny I know just how you feel about getting worse before they will treat you, one of my nightmares. Luckily my Onc. Has an all together more immediate response to treatment.
ScardyCats comments on the usefulness of chemo, although i understand how lots of chemo could leave wondering if it was worth it, for me the reaction has been the exact opposite. I've had 6 to 8 months chemo each of the last 3 years and despite some side effects my quality of life has generally been good. Each remission I've travelled extensively, and throughout, including time on chemo, I've thoroughly enjoyed my time knowing that it's limited. So for me all the treatment is worth it, side effects like fatigue and all, because without it I most certainly would be dead by now .... Blunt but very true. The very real possibility of more chemo in the next 2 or 3 months is something I welcome because it will buy me more time with the people I love.
What a truly horrible disease we've got ladies and were all dealing with it differently ..... But fab support on this site and I truly love all the sisters who share their lives to help the rest of us. XXXXXXX. Meryl
Chemotherapy targets fast growing cells and its a toxin with low grade/slow growing cancers its not as effective because the growth is too slow so the chemo ends up attacking the good cells. I'm not being pessimistic I'm just being pragmatic
I am in a very similar situation. I have high grade serous papillary oc, however past experience has shown that my cancer is very slow growing - I had two five-year long remissions. I queried this with the onc and he said that under the microscope it behaved like high grade, and they did not understand exactly why it did not behave like that in my body.
I have several tumors in my pelvis, which we know are growing, (largest 3x4cm) but the oncs do not feel I should have treatment at the moment. I still find this very hard to cope with as it does feel, like you say, that we have been shelved and they are not bothered about us. I guess I am hoping deep down, that if I were to have the treatment now, whilst I still have low level disease, it might just kill it all off. Where as waiting for it to get worse is a scary thought as I don't want to get ill. And, what if I don't notice that it has got a lot worse, as I never knew I had this in the first place.
The way my doctors have explained it me is
1. We cannot cure your cancer, but we can slow it down.
2. There are plenty of chemos that will work, but as i have no symptoms, chemo will just make me feel worse that I do now.
3. Eventually you become resistant to some chemos or just don't respond to some at all, so they want to use these drugs sparingly, so that they are available to us when we really need them.
4. If I really cannot cope (mentally) with having no treatment, they will give me chemo.
5. They are keeping a very close eye on me (3 monthly scans)
I know this is a scary time and I am still scared myself, but on a positive note, the last time I had chemo was 2 years ago and I am still fit and active (zumba each week and recently joined a walking club where we go on 12 mile walks at the weekend) So, I am actually quite grateful that I am not having chemo, as I would probably not be well enough to do those things that I enjoy.
It could be that your cancer is also slow growing, despite being high grade and that you may not need treatment for a good few years. I have had a terrible past few years because I basically put my life on hold thinking I could not do anything because I might need chemo at any moment.
I know I have rambled on and it is cathartic for me to get these things out, but I also hope this may make you feel a bit better about your situation.
And its so, so difficult not to do that. But you must start to do some of the things that you want to do. I have put off doing so much and now I feel like I have wasted time by not having done them sooner.
Also, regarding you post above about chemo being a waste of time. I can remember being very disappointed that my treatment in 2010 did not appear to work as it barely shrank my tumors. However, the team assured me that it was actually a good result as it was stablizing the disease. I didn't believe them of course and expected to drop dead any minute but as you can see that did not happen. (27 months since last chemo and counting!!!)
Think how many Great Manchester runs and whatever else you could do in 27 months!
Thanks for replying V, Im in a wonky place at mo, seeing onc tomorrow to find out results of scan and whether Im going to be put on letrozole (this is what the Marsden recommend), I just feel like a watch and wait scenario is doing me head in-I look at my kids every day and it breaks my heart as I dont know how long I have with them. my youngest is 3 and she doesnt deserve to not have her Mummy, eldest is 11 and hes just such a man about it all bless him.
Im always worse emotionally before seeing the consultants, they never instill any faith in me, I always come away feeling shaken and weak. The 'say it as it is' way of talking just blows me down, when in reality I am a very strong, positive person.
There is an organization in California (USA) called the Clearity Foundation, which creates tumor blueprints of ovarian cancer tumors that can help you and your doctors make more informed decisions about ovarian cancer treatment. If your insurance doesn't cover the costs, they can help out with the costs. Their website is clearityfoundation.org. Hope that helps!
If you would like to discuss this further do please give us a ring at Ovacome. I am one of the support line nurses and would be happy to talk things through The number is 08453710554 Mon- Fri10-5
Hi Kate,thanks for your reply,I hope ( or we hope ) that what your oc said about letrozole is right it will stop the tumours from growin for a long time i've had 4 different chemos since oct 98 the longest remission i had was 1year and that was with the ist chemo the last chemo i finished in march and by april my ca125 is up to 780 usually it is 3000 ++ my last scan was the same as it was when i got scaned 4th week into my taxol the more it didnt shrink my tumours,and it hasnt spread it is stable, so i hope letrozole will keep it stable for a long time. J x
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