Am I befuddled by four years of chemo ? Or does the rule book keep changing , unbeknown to us ? ( NICE recommendations apart ) .
When I started this " journey " , I was told clearly , in the presence of witnesses , that platinum could be used after six months...over the first two years , this was off repeated , but then was subtly changed in conversation to , ' no, outside of a year '... Now , about to start fifth line , this time Caelyx : come March , I will have been away from platinum two years (Cisplatin )... And the assumption is that I am platinum resistant ...so after Caelyx , what ? I say assumption , because although I understand , in principle , that the cancer outwits the chemo ...and we are doing a dance to side step to outwit the buggers , how do " they " know , without a) a biopsy ,or b ) trying , that the cells are indeed , platinum resistant ?
Might there be a variety of cells dancing about ?
Has anyone gone back to platinum after a break from it of some years .
In my case , Recurring is a bit of a misnomer...partial response each time , knocking out smudges whilst other smudges appear ...remission doesn't apply either , because it is always there , just being held back , quite successfully . By this I mean , not in major organs , no bowel issues , general health OK given all that's been thrown at me ...dire joint problems / I creak !!!
So , any thoughts on the platinum issue ?
What don't I get get ?
Best wishes ,
Angela .
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angeladale
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It's all such a worry. I was told by an oncologist that if a patient hadn't had platinum-based chemotherapy for a while they could try carbo-platin and gemcitibane which can have the effect of reversing platinum resistance. My friend went for a second opinion and this was the suggested route.
I think I'd go back to the hospital and ask them to explain why they say you're platinum resistant because everyone needs to have reassurance that they are being given absolutely the best options possible. Have you ever thought of asking for a second opinion at another hospital?
You've done so well and it's good you feel well generally. I know just what you mean about creaking!
I hope you get a satisfactory answer to your questions.
Carbo/ Gemcitibane was my second line ...and of course , I cannot say why , but I am in my 2nd London hospital with the greatest team imaginable ...I cannot fault the care ...but they are under such pressure etc . I think I should wave my confusions at the Ovacome nurses ...our oncologists confer all over the world , on a regular basis , and I wonder if day to day practise is modified as an outcome ...not just NICE guidelines ...
Crisp and sunny in East London ...hope you have a good day x
Hi Angela Sounds as though you're in excellent hands in your hospital. I'm very pleased to be in a London hospital too. My 2nd line was carbo-gem. I'm a bit worried starting the third line as I had a big dose of carboplatin first time as my former hospital forgot to order the taxol and I just had single dose carbo. I've been wondering whether this will make me platinum resistant earlier than I would have done had I had the lower dose of carboplatin and taxol.
It's misty here in Cardiff and very very cold. I took the dog for an early morning cycle and by the end he had frost crystals lining the edges of his ears!
The Ovacome nurseline is great. It's worth discussing with them. xx Annie
Hi Angela...
I find the scenario you have outlined difficult to grasp too. I've been told I had a partial response but could have treatment with carboplatin again later. I'm not, so far as I know, platinum refractory now (i.e. there's likely to be no real response) but how do my doctors leave platinum open when I basically stopped responding after 3 treatments even though I had the 6? Maybe someone here will have the answer.
I suppose , that given we are all different , that we respond in different ways to drugs , that no one knows what we'll present with and when ; that " They " cannot tell us anything in absolute terms ...
but none of that makes it any easier for " us " , the people living with the worst of the un known .
When the information seems to change all the time and we don't know why , that's what I am finding so difficult . We have to assume that it's all for our best . The best of me knows how lucky we are , the worst of me sees plots everywhere !! ( that 's a tongue in cheek , throw away remark . )
I know what you mean. Even though you jest, there is a truth there for me because I don't know when a person is defined as refractory and surely resistant means just that, I.e. resisting but not necessarily succeeding. (From the disease's point of view.)
And at what percentage of resistance does it change its name to refractory? And if the body's reaction can change for the better over time, why not have another go as promised if that's what the patent wants? Only the patient should decide those Quality of Life issues if there is a judgment to be made. That's how I feel anyway.
We seem to live in muddied waters, don't we? I used to think I'd lost the plot. Now I know that the plot's lost itself!
Yes, you are absolutely right , the plot has lost itself ! At the moment , all I know is , that yet again I have new, small volume disease and that tomorrow , I start Caelyx .
With luck it will all go well in itself ...and I will try to keep finding the key to the mystery of platinum !!!
Hi Angela. I am slow to respond to medical postings - but, my understanding is that if our cancer recurs in less than 6 months after initial or further chemo treatments it is considered 'platinum resistant', and if there is a gap of 6 months or more between recurrences - it is considered 'platinum sensitive'.
Mind you, protocols on any drug use or infusion levels / dosages etc can change.
Do ask your oncologist / liaison nurse / registrar to clarify your own situation.
Hi. I too am confused about the whole "platinum resistant" thing. My mom's first treatment was taxol and carboplatin. Her CA 125 for down to "normal" with that but it moved down slowly, oftentimes just changing a bit or staying around the same three times in a row and then going down. Anyway she did get to 35, so they decided she must be in remission after 9 treatments. They then waited Two months and according to her CA125 and cat scan they decided the Cancer never really went away after all and she was platinum resistant since it came back so soon. This has always really troubled me because I feel that maybe a few more treatments of the platinum drug would have gotten her into remission. I read that an oncologist in Texas will do up to 10-12 treatments even though the usual is 6-8. We really had to fight to get them to let my mom have 9 treatments.
...her next medicine was tipatican I believe and it didn't work at all, but they made her keep doing treatments of that saying they wanted to make sure she got the "full benefit" - All I kept thinking was how do we know she got the "full benefit" of taxol and carboplatin before they just decided she was resistant and couldn't take it anymore??? They tried gemcitaben next and now are adding carboplatin with it. This is a relief to me. I feel very good about her being on carboplatin. I still am very confused and angry though because we were told that the reason she had to stop at nine treatments was because of her neuropathy but now at this last doctor visit we were told that topatican causes neuropathy. So now I'm still wondering whether they could have given her another treatment or two of carboplatin without the taxol.
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