Anyone Platinum resistant? What did they do for you?

BellaDonna1959

I had 3 rounds of carbo & taxil - no response - tumors have grown since Feb 2022 CT.  What did you get offered after you found out you were Platinum resistant?  I don't understand why they don't try other platinum combinations.  They tell me there is too much spread to do the debulking surgery and that I have months to live.  What other options might I suggest?  They are going to discuss and get back to me and I've requested a second opinion from Princess Margaret Hospital.

Anyone told 'terminal' and still here months or years later - what treatment worked for you?  I am high grade serous ovarian stage 3C spread to many sites within the abdominal cavity.

Fearless

@BellaDonna1959
I too am high grade serous 3C since 2017, although no spread to organs or outside my abdomin so far.  But I"m also on my third or fourth recurrence now and  as of the last one, deemed platinum resistant like you.  They've put me on course of Caelyx backed up with Avastin.  So far it seems to be working.  The tumor on my left is showing a bit of shrinkage adn the one on the left is stable since we started back in December. Regardless, I can feel and understand your anxiety and your desire to continue to fight is clear.  IF you need answers, need a referal, need anything to support continuing hope right now, this is the time to demand it.  Time for you to take the bull by the horns.  Waiting for a "we'll discuss and get back to you" isn't sufficient. It\s as easy as saying.....rather than wait for you to call, let;s set up a telephone conferecne for Friday at 2pm and I'll expect you to have the answer then.  Taht way the ball is in your court...you steer the ship.  And I pray the news you get, whatever way you get it, gives you some hope gal. 
  

BellaDonna1959

They had told me that they will be calling me Wed next week after reviewing all my charts and discussing my case with the tumor board and I've told them to get the whole file to PMH today.  They are setting up an appointment with a Credit Valley medical oncologist also.

Fearless

Good to hear you're being connected to a medical oncologist. I take it your treatment before was with a gynecological oncologist who's a surgical specialist.  I've been under the care of a medical oncologist for the last 4 years and credit much of my survival to her.

BellaDonna1959

That's good to hear!  I got my 2nd opinion confirmed for Monday next week!  This is great - he can tell me what he would do for me and about trials at PMH and then I can compare that with what the team at Credit Valley come up with for me.  I feel a bit more hopeful today.  

flory

Hi @BellaDonna1959 how did you find out you are platinum resistant? I have had one round of chemo and my CA125 has increased. I’m worried that I might not be responding to my chemo. 

melissa

Hi @flory was the rise in ca125 significant? Did your Dr seem concerned. I've heard ca125 can fluctuate sometimes. That being said the definition of platinum resistance is when a recurrence happens within 6 months after chemo ends, and platinum sensitive is when a recurrence happens greater than 6 months after chemo. And refractory to platinum usually means when progression happens during chemo. 
I wouldn't worry just yet. If I remember correctly you said you were receiving IP chemo, I would ask my MD if that alone may increase ca125 due to inflammation. Also, a personal question if you don't mind sharing the type of ovarian cancer you have may help. Lastly, I would ask ( demand) for a CT scan especially if you have symptoms no matter how mild. We have to constantly advocate for ourselves, iI was diagnosed in July and I make my surgeon give me requisitions to go for CT scans earlier than they recommend. I pay out of pocket and it's a small price to pay for a bit of peace of mind

flory

Hi @melissa I have stage 3c high grade serous. Surgery was on sept 6 and dr felt she was able to get all visible cancer. My CA 125 was 36 before surgery then 40 before first chemo now 42. I receive my second chemo on Wednesday. I was surprised to see it was rising and not lowered by my surgery and a round of chemo. I am praying that I respond to my frontline. Thank you for your reply 

melissa

@flory it's normal for the ca125 to rise after surgery due to inflammation during healing. I clarified this with my surgeon. Mine was 30somerhing before surgery, then rose to 101 a week after and has been declining to 9 most recent. I can imagine it's nerve-wracking try not to worry too much. Hopefully it's just due to your recent surgery.  Let us know!

flory

Thank you @melissa

Strongwoman

@flory Sounds like you have an answer to your question.  How is it sitting with you?
I think that CA125 will fluctuate during chemo as well.  With HGSC some ladies are diagnosed with numbers in the thousands. It seems alarming but is normal from what I have read and read on this forum from posts.  I feel you are doing amazing, have your 2nd chemo coming up and recovery from it. It is hard when it is new and navigating it all as well.  
  Let us know if you have any more questions or concerns.
Take care

flory

@Strongwoman of course I worry and hope I’ll see the number come down. I am negative for BRCA so I am praying that I respond to treatment. I think my anxiety gets the better of me most days. 

Strongwoman

@flory All of it is normal. It is new, scary not to mention what our bodies are going through. I am doing my best to remember but I don't think I asked a lot about my CA125 level during treatment. It meant more to me when I was done. With LGSC, we usually have the one chemo round then no more. (I am on an oral chemo for my recurrence). 
  I had genetic testing done and thus far there is nothing of note. Meaning they can't pinpoint anything specific yet. With research and advances in technology perhaps that may change in the future.
  We are all here for you and understand what that anxiety feels like. I still experience some from time to time.  
  You will get through this. I chunked my chemo down which helped. I had 6 rounds. Halfway was exciting and seemed long to get to. Thr second last one was surreal. I had an eventful first and last treatment so I will never forget it. In fact, I ran into a nurse that was there for my last one and she remembered. It was her longest day at work ever! I can laugh at it now but at the time I could not.
  Hang in there!

flory

Thank you @Strongwoman it helps so much to have a place to share and learn. I appreciate your replies very much!

Strongwoman

@flory Good morning, checking in to see how you are doing and how your treatments are going.  If you would like to share, I am interested in what you will post. 
Take care

flory

Hi @Strongwoman I will have my 3rd chemo next Wednesday. I am managing the side effects so far. I am hoping i respond well to chemo and will have some kind of remission. This disease causes me much anxiety and I am still learning how to cope with that. Thanks for asking 😊

Strongwoman

@flory Thank you for sharing. Happy to hear side effects are manageable.
  Do you mind sharing how you are dealing with the anxiety?  

melissa

Hi @flory

I am sorry you are suffering with anxiety. I myself am as well. I see that you will have round 3 chemo, I'm not sure where you are in your treatment if this is first line or not. For myself, I have round 6 of 6 Nov 15th and I feel the closer I get to completing my first line treatment, the more anxious I get. It's not the same each day but the past few weeks it's definitely hard

Whereas when I was first diagnosed in June , I had surgery, drs appointments was meeting with friends and family, anything to stay busy so my anxiety was low all things considered. But then as treatment progressed, and when my hair fell out and then voila!! I'm a patient with cancer ( I hate the term "cancer patient" and would love to have that changed in medical terminology one day).

Have you considered speaking with a professional about your anxieties? I knew from day one I would have to, but put it off and now here I am almost five months into my diagnosis and I think it's time.

Whatever you decide, I completely empathize with 
The anguish that this disease can cause. I have a rare type ( clear cell) that has a much lower response rate to chemo so the fear of it not working is almost too much to bear at times So I tell myself it has to work! Fingers crossed the chemo works for you as well and I hope you find some ways to de-stress
You are more than welcome to send me a message anytime.
Be well

flory

Thank you @Strongwoman. To deal with my anxiety I try to keep busy and stay off the internet. The more I read about ovarian cancer the more anxious I become. While I want to be informed I find the information to be too depressing.
Thank you  @melissa ! i am meeting with a psychiatrist early December so hopefully I will get some strategies and or meds. I also have a liver scan in December so that is stressing me out. All the ladies here are so brave and are going through so much. I hope I can be a strong as all of you!! 

melissa

@flory
The internet is horrifying! But I think that much of the information about ovarian CA is incorrect much of the time. You can look at 5 websites and survival rates will all be different. 

I think educating ourselves is of the utmost importance but we need to be mindful of how we go about it. And I think that 80% of the internet is unreliable. For myself when I research my subtype because it's rare most of the studies came out of Japan and the patients were from the 1980's to average 2015 so old!

In terms of medication when I was diagnosed I asked my GP for a small dose of ativan and am not ashamed to say I take it most days as while I don't forget I have cancer, it does help
I pray that your liver scan will be clear!

flory

@melissa good advice about the internet!! I was diagnosed in august and spent too much time reading very discouraging information. This is my front line treatment so everything is new and scary. I grieve for my old life before cancer. I miss it so much. I hope your treatment works for you and you have the best possible outcome. I pray that a new and effective treatment will be found in our lifetime. 

melissa

@flory
We are in the same boat. Newly diagnosed. Sometimes I can manage to stay off the internet for a week or two and I can honestly say that those are better weeks. We cannot allow statistics to bring us down. I feel that we are now entering a groundbreaking era for ovarian cancer research and development for new treatments and this will lead to improved survival statistics. Like you said, the tricky part is will this be in available to us. There are always studies going on and I think many targeted treatments are on the horizon

You took the words right out of my mouth, grieve for my old life. I was 40 when diagnosed and was about to start trying for a child. Trying for a child at 40 would've been extremely challenging but cancer stole that away from me and the life I could've had, having a child is what I grieve most and has burnt a hole in my heart

Strongwoman

@flory Your welcome.  Anxiety gets the best of us.  Grieving that you mention can be attributed to anticipatory grief. If you type it in the search bar, you should find posts on it.  We all grieve at some time or a point in time along our journey. Looking at what could have been or what has been taken from us can send one in a downward spiral.   Many of us are not the person we used to be.  How could we be?  It is the situation we go through, the effect it has on us and what we do with it that which can determine outcome.  I will never be what I was pre-diagnosis.  It took some time and tears/fears to look at it in a different light. I am who I am currently. Inside (minus some emotional scars) I am the same person.  My family/friends see me as brave and as my son puts it a "champion". I see myself as a slightly different person physically and mentally I have changed.  I find solace and happiness in little things like the warmth of the sun, laughter and kindness.  I see the ones that rallied around me and supported me through this.  The ones that left and don't communicate, to me are a thing of the past. Look forward the best you can. Take a day at a time. Stay off Dr. Google. Find support/information through this forum and above all, ask for what you need.
  I think it is wonderful, that you have recognized needing help and have an appt coming up.  Please don't read into what I wrote as:  "she sees everything rosy".  Well I didn't. I sought help and have grown a lot since joining my Palliative group. I do things that make me feel good inside and I am kind to myself.  It is not an easy road for us and takes time to get there.  I have confidence you will.
  Front line treatment is new and an unknown for many and as we go along in the cycle there are more changes in oneself. We wonder if it will work, what if isn't doesn't. What will happen next. How will I feel. What will I be able to do or not do? Time, patience and support.  
  We are all here for you.  If you are not sleeping, tell your team. There is medication for it.  I did it and I don't look back or try to not take it.  Although I never used to use meds, I do now and have come to terms with "it's what I need right now".
 I am confident your appt will help.  Now you have to find a way to occupy your time and laugh....even if it now and then.

flory

@melissa my heart hurts reading your post. I was a fertility patient for 8 years. I took fertility drugs underwent 5 cycles of in vitro to have my 2 daughters. I am certain that my fertility treatments contributed to my current diagnosis. I know the pain of wanting a baby and it is gut wrenching!! I am so sorry cancer took that from you. You are so young to be going thru this!! 

Very wise and insightful words @Strongwoman! Thank you for taking the time to write this. I find if I stay really busy and focused on my to do list I have less time to spiral. We just sold our Florida house last week as our dream of being snowbirds is no longer feasible. My next project is to declutter our current home and downsize in the spring. There is a lot to do before we list our home. This keeps me busy and that helps my state of mind. While I am hoping for the best I find comfort in preparing for the worst. Strange as that may sound it gives me peace to do everything I can now to make life for my husband and daughters easier later. 

Strongwoman

 @Flory You got it!  That is exactly it!.  I had my business to close and all that entails. Then moved on to making sure wills were up to date, life insurance, so on. Then i started decluttering as much as I could and selling bigger pieces. Other stuff I donated. Then made the boys go through their stuff.
I have cleaned and organized shelves, rooms, closets and drawers.  I do my Legacy work, attend Hospice every Wed and arrange lunch or afternoon  visits with friends/families.  Always making sure my crew come home to dinner of some sort.  Then it's rinse, repeat. All if it occupies my time and I wonder most days, where the day went.  Esp with appt sprinkled here and there throughout it.   
  What you are doing is exactly what I am doing.  I have even gone to funeral home, obtained a booklet and have most of it planned out for them.  They will be going through enough that I, too, am trying to make it easier on them.
  Look at us and others......continuing to "fix" things for them all.  Nature, I guess and nurturing for us.

flory

@Strongwoman the love for our children forces us to put their wellbeing first. Nothing else matters.

Strongwoman

@flory No truer words have been spoken

BellaDonna1959

I just wanted to add an update to this thread - I've outlived their 'months to live' by many months now. I'm on weekly Taxol and Avastin is added every 2 weeks.  My tumors shrunk a bit and seem stable for now.  They warn me the progression could start again at any time.  I'm on borrowed time but making the most of it.  Who knows what might come along for me in the future?  I never give up hope and I never give up fighting and researching my cancer type.  Hope is possible and keeps me going.  

flory

@BellaDonna1959 very inspiring and encouraging!!! Wishing you all the best!

Strongwoman

@BellaDonna1959 That is wonderful news!  Have you been feeling better overall than you had been?
Hope is possible and is a true statement.  

I will leave with a quote from "When Bad Things Happen to Good People" by Harold S. Kushner

"We may not ever understand why we suffer or be able to control the forces that cause our suffering but we can have a lot to say about what the suffering does to us, and what sort of people we become because of it.  Pain makes some people bitter and envious.  It makes others sensitive and compassionate.  It is the result, not the cause, of the pain that makes some experiences of pain meaningful and others empty and destructive."  

GloHo

@flory
You're a trooper. Sounds like you are faring well in respect to side effects. You are definitely doing everything right. I have found that I often avoid my home office because that is where I have to put my stuff in order. I have been going at it...but rather slowly...and with a lot of procrastination. I am hoping with the onset of winter that I will pick up the pace and get things done. That way it will not always be on my mind...it is a nuisance distraction.