Platinum resistant anyone??: After my 3rd and 6th... - My Ovacome

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Platinum resistant anyone??

Nancybib profile image
17 Replies

After my 3rd and 6th scans I was declared NED. After a few short months two small markers in my left pelvis. I did incredible on the taxol and Cisplatin. Cleaned me up good. Therefore not sure if these new cells are resistant to the taxol or Cisplatin. Changing up and starting a new chemo. CANCER is a chronic disease and will be treated as such. Anyone experience a quick recurrence after doing great on front line??? Thanks Nancy

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Nancybib profile image
Nancybib
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17 Replies
Daniellafriman profile image
Daniellafriman

Do you have low grade oc ? My dr told me that low grade is usually platinum resistant .

Hope all the good for you :)

Nancybib profile image
Nancybib in reply toDaniellafriman

I am actually Fallopian tube serous carcinoma which is really ovarian cancer. Stage IIIC I have learned much since this diagnosis. First and foremost, gynecologists need to be more vigilant at yearly exams; recto/vaginal exams are the most accurate way to "feel" a pelvic growth. Measures need to be taken by these doctors holding them accountable for lack of care.

85live4ev profile image
85live4ev in reply toNancybib

Hi Nancybib, yes you are so right but I feel every one involved in woman's health should be more vigilant, I am sure if they were then there wouldn't be so many ladies on here. Take care Cindyxx

Hi Nancybib and welcome to the site. I am sorry you have to have more treatment, Did they give you a plan yet and do you know what drug you will be on. It is dissapointing but hopefully this time around you will get some long time remission. Everyone is different and what works for someone else may not work for you and vica versa. I am in the same boat, mine is chronic but I have had a break this past year so I feel so lucky.

Nancybib profile image
Nancybib in reply to

I will begin Doxil this month and adding Avastin next month. Glad to hear you had a break this year. Never do we ever think we'd be in this boat; healthy, active, 51 and bam!!! Any input is greatly appreciated. I handled taxol and Cisplatin very well but a few short months later and here we go again. THANKS FOR YOUR HELP!!!

Leeds2015 profile image
Leeds2015

Hi Nancy. Welcome to the platinum resistant gang. I managed to go 7 months once realised was growing again before I needed treatment again, monitored it and felt good so I waited until I became more symptomatic,I am now on cisplatin and etopiside. Will be interesting o see what regime they offer you next, keep us posted and good luck, if I can offer any help let me know. Xxx

January-2016-UK profile image
January-2016-UK

Hello Nancy, I'm the same. There was no visible sign of disease after my operation and NED when the chemo finished. However, within three months, I've now recurred in my para aortic nodes. Have you a treatment plan yet? All the best! Helen

Nancybib profile image
Nancybib in reply toJanuary-2016-UK

My new plan is Doxil the first month followed by Avastin with doxil the second month. First line for me was taxol and Cisplatin and was NED since the third cycle but three months after first line BAM little bastard is back. So I lost my mind at first being I did so well but I'm realizing many women are in my boat and have recurred early resting this as a chronic disease. Thank you all for helping me understand this disease.

January-2016-UK profile image
January-2016-UK in reply toNancybib

I am waiting to be accepted onto a trial which may include Doxil (it's called Caelyx in the U.K.) either on its own or together with Avelumab. It's true what you say, feeling so elated about such a great response but unfortunately not sustained. I think I may have read somewhere that because we did have a response, we might be offered one of the platinum drugs again if needed.

Juliette35 profile image
Juliette35

Hi Nancy I am on weekly taxol, and so far my markers are going down. last time I saw my oncologist it was 31 had gone down from 80. After I finish this I hope I get a break from chemo, I started last year on carbo/taxol. finished before Christmas then put on avastin but unfortunately didn't work for me . was then on calyx but that didn't work so now on just taxol.I have been told by my macmilan nurse to treat it as a chronic disease. My oncologist said it will grow back and they won't be able to operate. I did have a full debulking op last year, but because the cancer is in my lining so can't operate. You are doing very well and sending you big hugs. Lots of love Julie xx

LesleyGreengran profile image
LesleyGreengran

Hi. I'm platinum resistant, on caelyx now. i'll find out on Wednesday whether it's working

Nancybib profile image
Nancybib in reply toLesleyGreengran

Sending good vibes your way. Please let me know how your appointment goes on wed.

tntknc profile image
tntknc

Yes I just have!

I was shocked to hear that the cells had mutated and now are platinum resistant. I was suppose to start my new chemo today of Doxil and Avastin but my insurance for the first time got in the way. I'm not happy about that at all and now I will be getting started next week.

Nancybib profile image
Nancybib in reply totntknc

Wow!!! I was shocked too. I told my therapist that is completely knocked me off my feet. I've been slowly rising and will be starting my new regiment on Monday. Are you in the states or the UK? I'm in the states; JERSEY GIRL!!!! Stay in touch and let us all know how you are doing. BIG HUGS!!!

tntknc profile image
tntknc in reply toNancybib

Hi Nancy, I live in Georgia! I'm a southern girl but my family and I did live in New Jersey for a little bit, down in Lakewood.

Big hugs to you also! I hope you do really well! Talk again soon!

Tracy

Nancybib profile image
Nancybib in reply totntknc

My husband works in Lakewood and we live in Jackson. We are so close to Six Flags we hear the swiooshing of the roller coasters. Big hugs to you. XO Nancy

tntknc profile image
tntknc in reply toNancybib

Wow! What a small world! Have a good day! Sending hugs back at ya! :-)

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